# "You Have Cancer"



## Timeshare Von (Apr 13, 2015)

To all of my timeshare and travel pals . . .

I know, tough words to read right out of the gate, aren't they?  I have a lot to say, and did not want them lost in paragraphs of updating what's been going on with me for the past couple of weeks.  Let me first reassure folks that I am comfortable and very optimistic with the prognosis.  In fact, when I read the diagnosis buried in pages of online medical info "Ovarian Cancer - 4/2/15" being listed in my medical history was not a surprise.  It wasn't until my post surgical follow-up last week that I really understood everything that I needed to know in order to share with others.

It is important to me that I again reassure folks that I believe everything is going to be just fine.  Yes, cancer is a scary word.  Heck, here in Milwaukee there is a media campaign on the radio, where they bleep out the "c-word" as if when they do not say it means it doesn't exist.  From the beginning of my medical issues (just a short five weeks ago), I am most grateful that my primary gyno doc and subsequently my gyno oncologist did not avoid using the word.  It was somehow reassuring to me, knowing what we were dealing with "might be" cancer and that they had a game plan to tackle whatever the outcome of my medical testing and surgery.

So a little bit about how it came to be that I am now a cancer survivor.  I want folks to know that this will be perhaps more information than many may want to read.  If that is the case, you may feel free to stop reading at any point.  I will encourage folks, men as well as women, to continue on, however, as I believe my story may help save the life of another.  Ovarian cancer is one of the "silent" killers, often diagnosed when it is really too late to have a positive outcome.  For me, I'm one of the lucky ones.  Stage Ia is about as good as you can hope for if you receive the "you have ovarian cancer" message.

I am a post menopausal 57 year old woman, having been late to the party at the age of 55.  After no periods for nearly 18 months, however, I started spotting in February of this year. Nothing to be concerned about; in fact, I was told by many, it was to be expected.  What changed was the nature of the bleeding that I was experiencing.  After a week of what I thought was abnormal, I made an appointment with my gynecologist.  I had been seeing this same doctor since our return to Milwaukee back in 2008, and he was acutely aware of some of my other medical issues surrounding my lady parts.

He was able to work me into his schedule on relatively short notice, for Monday, March 2nd.  During that exam, he observed a polyp on my cervix.  He removed it, and conducted a couple of other biopsies of that area, plus my PAP smear.  Within 48 hours, all came back as normal.  And while the polyp could have been the culprit for the bleeding, he wasn't 100% sure, so he ordered an ultrasound which was done on March 12th.

During that procedure, not only was my large fibroid filled uterus observed and measured, but something new was found.  A roughly 10 cm mass in my left ovary.  Fortunately, I had the original diagnostic ultrasounds from 2005 and 2006 for comparison.  Clearly this was something new.  Because of the potential for cancer, I received an immediate referral to the Froedtert Cancer Center with an appointment with the oncologist who would be overseeing my case and performing any surgeries necessary.  My first appointment with him was March 19th and at that time, we scheduled surgery for March 27th.

From the initial observation of this ovarian mass, until the morning of my scheduled surgery (March 27th), we remained optimistic given the uncertainty of all of the initial tests available to diagnose cancer.  My cancer blood panels were taken on March 19th, including the CA125 specifically for ovarian cancer.  All were well within the normal range.  And yet, my oncologist was still bothered by what he termed "an irregular surface of the mass" in my ovary.  He was still weighing all of the surgical options, still not sure exactly what we were dealing with.

In order to have more information, he ordered a CT Scan which was performed on March 23, just a few days prior to my scheduled surgery.  Based on those findings, it was decided I would have my ovaries and fallopian tubes removed, as well as a full hysterectomy to get rid of the endometriosis and fibroid issues I had been having for nearly 10 years.  What we weren't sure of, was whether or not the full cancer staging process would be necessary, subject to the actual visual and pathological inspection of the left ovary and mass.

The CT Scan results were summarized and reported the evening prior to my surgery; I read them for the first time on Friday morning before heading out to the hospital . . . "Large left adnexal complex cystic mass lesion with enhancing internal nodule, likely representing a primary ovarian malignancy."

Prior to the surgery, David and I had a good conversation of "what if's" with my doctor.  In the absence of conclusive evidence that what we were dealing with was NOT cancer, we would proceed with the staging process.  This is typically the next step necessary to determine at what stage the cancer is in if there is cancer.  Because the initial frozen biopsy of the ovarian mass was "undetermined" the staging process was performed.  During that procedure, they removed 36 lymph nodes from my abdomen area and the omentum.  They also took samples from throughout my pelvis and abdomen for additional testing.

In the recovery room, my doctor continued to show the appropriate balance of caution with optimism, reiterating we still just do not know for sure if this was cancer or not.  The pathology on all tissues would be conducted and results back in about a week.

The initial diagnosis of "Ovarian Cancer" was entered into my online medical chart on April 2nd.  What I didn't know was what stage cancer we're dealing with or the prognosis.  For that, I would have to wait for my follow-up appointment on April 9th.  Because we're dealing with a stage Ia and that my ovarian tumor was a grade 2, my oncologist does not feel that chemotherapy is necessary.  As it stands now, there is a 2% possibility of the cancer returning elsewhere in my abdomen.  With chemo, that could be reduced to about 1% . . . hardly enough of an improvement to go through the chemo process and all of the ugly side effects.So for now, I am a cancer survivor!  I will return to my oncologist for follow-up every three months for this first year.  Our fingers are crossed that my experience with cancer will be short lived . . . a mere weeks from the first discussion of possible cancer (March 16th) and the surgical removal (March 27th) to the subsequent prognosis and action plan (April 9th).

I share my story in hopes that others who may face cancer in the future, either personally or through a loved one, will maintain faith and keep your spirits high.  Cancer is no longer an immediate death sentence.  I encourage everyone to be body aware, and recognize when things are "just not quite right" and get into your doctor.  I cannot say enough for how my primary gynecologist handled my situation when I first had reason for concern.

Please feel free to share this with others who may benefit from hearing firsthand from a cancer survivor.


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## rapmarks (Apr 13, 2015)

my prayers are with you, I   survived two types both were  multifocal and invasive.  I am glad you can avoid the chemo.


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## rickandcindy23 (Apr 13, 2015)

Yvonne, I wish you well.  Sounds as if you are indeed a cancer survivor.  I am also glad you could avoid chemo.


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## Mosca (Apr 13, 2015)

Hang in there! Lots of us are survivors, and have survivors among family. Life is good.


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## brigechols (Apr 13, 2015)

Thanks for your post. Kudos to your ob/gyn for listening to you and putting together an effective care plan. You are a survivor and an overcomer. Check out Mandisa's 'Overcomer' music video on You Tube.


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## presley (Apr 13, 2015)

I'm so glad you caught it so early! Even though you are in the clear, you'll be in my thoughts and prayers.


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## LisaH (Apr 13, 2015)

Yvonne, thanks for sharing your personal experience. Your post may very well save someone's life. It certainly has reminded me that it's time to make an appointment with my doctor for an annual check-up. Good luck and hope you are cancer free!


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## jd2601 (Apr 13, 2015)

Best wishes.  I believe you are in a very good place with Froedtert and the Medical College of Wisconsin.


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## pedro47 (Apr 13, 2015)

brigechols said:


> Thanks for your post. Kudos to your ob/gyn for listening to you and putting together an effective care plan. You are a survivor and an overcomer. Check out Mandisa's 'Overcomer' music video on You Tube.



You are a survivor and I wish you well


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## vacationhopeful (Apr 13, 2015)

My female cancer issue is now closing in on 2 years since diagnosis
 and surgery. I went to my ob/gyn practice's PA who did an in office tissue sample - with no pain blocking. 2 days later, the lab report was cancer and a phone number to the cancer surgery center. Try getting an appointment QUICK ... the appointment gal was NOT having a good day, but I got the 10AM next morning appointment (seems I had really nice words to say to her and I promised NOT to tell HOW I got that appointment). Surgeon called me back and I told him, the ultrasounds he wanted me to get were done, were over the last 3 years with the last one 6 weeks early; the radiation center emailed them to him. I met him and we scheduled surgery for the next week. I was going to skip my DVC exchange to VWL but his schedule changed and I end up going to Disney with a sister ... so 2 weeks, testing to surgery and discharge from hospital with 27 staples. 

My siblings were great ... flying in from Texas and California (they had tickets to a high school graduation in MD ... they got to babysit me, too 100+ miles away). 

Could not drive for 30 days was the rough part. Ugly scar about 14 inches long. Fibroids prevented the robot & laser surgery ... but the news on that surgery style in the past 20+ months, I can live with the scar verses MORE worry.

Think positive thoughts and enjoy your new life .. it is more precious now.


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## Zac495 (Apr 13, 2015)

Yvonne,
I'm so glad you shared with us. We need to make people realize cancer is not a dirty word - nor is it the sign of death.

What wonderful news that you don't have to go through chemo. That's rough. Ovarian cancer is the silent killer - I know annual gyn check ups can help - because they go in and feel -but even that isn't enough. One day they will find some better test. Meanwhile - all women should go to the gyn every year. Nowadays those of us with only one partner don't need a pap annually -but that internal exam is our one way to possibly catch ovarian. SO GO!!!

Being a survivor changes you. You will forever know it can happen to you. SO GO LIVE YOUR LIFE. You're young!!! Have fun. Make memories. 

All my love to you, fellow Survivor.
Love,
Ellen


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## Blue Skies (Apr 13, 2015)

Thanks for sharing your story.  I wish you the best!


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## silentg (Apr 13, 2015)

Yvonne, Thank you for sharing your story. Now you can enjoy more timeshare vacations and I wish you many healthy years ahead!
TerryC


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## elaine (Apr 13, 2015)

thank you for sharing your story. And healthy healing to you! Elaine


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## Tia (Apr 13, 2015)

My prayers and best wishes for a good outcome


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## MULTIZ321 (Apr 13, 2015)

Yvonne, 

Your fortitude and resilience are obvious.

Keep strong on your journey to recovery and continue to share your travel photos with us.

My thoughts and prayers are with you.

Richard


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## Timeshare Von (Apr 13, 2015)

Thanks everyone!  I love my travel/timeshare family here on TUG and appreciate the warmth and friendship shared.

Words of encouragement are beneficial and a two-way street.  The messages from each of you reinforces my strength, as I hope mine will be helpful to others in some small way.

To others who have struggled through a diagnosis of cancer, I am especially appreciative of your strength and willingness to share with us here.  Ellen/Zac in particular, I remember your original messages a couple of years ago.  I remember thinking how strong you were in the real face of this nasty disease.  Thank you for giving me and others the motivation to share with others in hopes of finding some way to help folks manage through hearing those words "you have cancer."


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## Timeshare Von (Apr 13, 2015)

*P.S.  RE:  Travel*

This did present a little set back on my spring travel plans.  I had to cancel a trip "home" to NoVA later this month and a 10 day trip to Yellowstone next month.

For now, it's about healing and not overdoing it.  I still have a work trip (using a timeshare) to Vegas coming up in June and a nice two-week vacation to New England and Canada this fall.


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## DaveNV (Apr 13, 2015)

Von, you're a class act.  I wish you good health, strength, and great seat assignments. 

Dave


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## Sea Six (Apr 13, 2015)

My wife was diagnosed with cancer last year. So far, so good.  She is doing well, and hopes to be one of the "survivors" one day.  You have to make it 5 years from diagnosis to make that claim, but she has been told that should not be a problem.  Prayers for everyone going through this, and I appreciate your detailed post.


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## MuranoJo (Apr 14, 2015)

Thanks for posting your experience outlining your symptoms and how you were successfully treated--it could be very helpful to someone else down the road.
Also, my best wishes for a speedy recovery and many, many more travel adventures for you.


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## Karen G (Apr 14, 2015)

MuranoJo said:


> Thanks for posting your experience outlining your symptoms and how you were successfully treated--it could be very helpful to someone else down the road.
> Also, my best wishes for a speedy recovery and many, many more travel adventures for you.


I cannot say it any better, so I'll just say AMEN! Thanks for posting!


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## rapmarks (Apr 14, 2015)

The next step is to not let them blame cancer on anything else that happens to you.  My friend went thru lots of heavy chemo, ending last October    She started getting pains and muscle weakness in Feb.   they blamed the chemo, gradually couldn't move her arms, legs, etc.She was told she would never walk again.   Finally her oncologist up north made them do a spinal tap and she had Guillame Barre.   She is using a walker now, and should recover.  It was so easy to diagnose it as a result of cancer, instead of searching for the truth.


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## IreneLF (Apr 14, 2015)

Thanks for sharing.  



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## Dori (Apr 14, 2015)

Thank you for sharing your "journey". I am so glad that things are going well. Cyber hugs are on the way!

Dori


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## Paumavista (Apr 14, 2015)

*I was diagnosed 7 months ago*

I was diagnosed with Anal Cancer during a routine first time colonoscopy (at 55) with NO prior signs or symptoms in August!!

I have been through chemo and intensive radiation.  I will be checked every 3 months to insure that the treatment worked.....it is still too early to tell conclusively.

But I am feeling good today.  I attended my daughters wedding in November (a cruise with 55 family members)!  In February we went back to doing foster care and I have 3 little ones running around the house this morning (1,2, & 3 yrs).  

I know we're all supposed to live/think like this but for me everyday is an absolute blessing; every day I am grateful;  I am so thankful to be physically able to enjoy each day right now & I will make the most of every day I have. 

Judy


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## falmouth3 (Apr 14, 2015)

Yvonne, Thanks for posting your informative health advisory.  I'm glad that your doctor was not complacent.  It sounds like you're well on your way to a full recovery.  Best wishes!

Sue


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## falmouth3 (Apr 14, 2015)

Paumavista said:


> I was diagnosed with Anal Cancer during a routine first time colonoscopy (at 55) with NO prior signs or symptoms in August!!
> 
> I have been through chemo and intensive radiation.  I will be checked every 3 months to insure that the treatment worked.....it is still too early to tell conclusively.
> 
> ...


Judy, thank you also for posting your health information.  It sounds like you've been through a rough time, but I hope that your routine colonoscopy saved your life.  Best wishes to you also for a full recovery.

Sue


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## normab (Apr 14, 2015)

*To Yvonne and all the other survivors*

It is wonderful to hear you are all doing well.  DH had treatments last year for bladder cancer and is clean right now, but it is likely it will come back at some point so he needs to be vigilant.    

It is an experience that does change your outlook.  Thank you all for sharing.

Also, just my added comment, to thank all the researchers that have made many cancers treatable.  It is amazing where we are today vs only 20 years ago.  So many folks are beating and/or living with cancer.


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## suzanne (Apr 14, 2015)

Thoughts and prayers are headed your way. Your not alone on TUG, many of us or our spouses, friends and family have been there. Please continue to keep us updated on your progress.

Suzanne


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## mpizza (Apr 14, 2015)

Best wishes for many years of continued good health!

Maria


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## pittle (Apr 14, 2015)

Thanks for sharing!  I know how hard it is because hubby had colon cancer 6-1/2 years ago and did not want to tell anyone because his mother had died of it and knew that our family would freak out.   His was stage 2 also and he is thriving now!  We are pleased to say that he is a cancer survivor too!


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## easyrider (Apr 14, 2015)

May God bless and protect us all.

Bill


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## Timeshare Von (Apr 14, 2015)

Paumavista said:


> I was diagnosed with Anal Cancer during a routine first time colonoscopy (at 55) with NO prior signs or symptoms in August!!
> 
> I have been through chemo and intensive radiation.  I will be checked every 3 months to insure that the treatment worked.....it is still too early to tell conclusively.
> 
> ...



Judy I'm so sorry to hear of your cancer diagnosis, but also equally happy to know you have a treatment plan and feeling good today!

Thanks for posting and sharing your experience.


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## Timeshare Von (Apr 14, 2015)

easyrider said:


> May God bless and protect us all.
> 
> Bill



Here Here!

My personal gratitude and thanks go out to everyone who has responded with such kind and giving comments.

It really is helpful to know of others going through the "you have cancer" diagnosis and doing well.  I know we can't all be as fortunate, and for those with loved ones battling cancer, you are in my prayers.


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## sgtdesi (Apr 14, 2015)

Thank you for sharing your story and I wish you a speedy recovery!


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## Passepartout (Apr 14, 2015)

I had some skin cancers excised last fall. Tomorrow I go in for a 'full body scan' 6 month checkup. I have a couple of spots to have the dermatologist look over. Pay back for those long summer days at the pool as a kid. Or frying under the Vietnam Sun. Who knows.

Jim


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## hefleycatz (Apr 15, 2015)

Thank you for sharing


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## cgeidl (Apr 15, 2015)

*We also are lucky*

In September my favorite wife had an ultrasound and the doctors discovered a 15 CM tumor . At  her 100 pounds I could not believe the size .The blood tests indicated a high probability of ovarian cancer and we were referred to a local highly rated cancer center. The oncologist did an exam and even with the high readings did not think cancer was likely. He did surgery a few days later and removed the mass. First tests indicated no cancer but later when we met with him we found some very small amount of non life threatening cancer was indicated in the tumor but not outside. She has only to have an exam every 6 months to make sure everything stays well. This cancer doctor has several stage four patients living over 10 years so even the most advanced stages have hope.
Just saw where injecting small amounts of polio was saving several cancer patients with advanced inoperable brain tumors. And the treatment was successful on other types of cancer
Glad to hear everything turned out well for you and you get back to your vacations.
I have had a couple serious heart surgeries in the past and always assumed and planned I would be gone long before my wife but life doesn't goes as planned always and the thought of my wife going first was absolutely devastating to me.


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## Timeshare Von (Jun 14, 2015)

cgeidl . . . sorry I missed your post when you first made it.

I'm so glad your wife is doing well.  You're right about the prognosis, even for those in advanced stages of OvCA.  I hope she continues on a healthy path of recovery.

For me, I was able to work a little from home in late April and returned to work in my office on a limited (about 5-6 hours/day) basis in May. I'm now back working my usual hours/schedule although I will admit I still have some tenderness around my surgery sites.

I have done the genetics counseling and am awaiting the results from the genetic testing. It should be any day now.  I'm praying for a negative on the BRCA1 and 2; not so much for me (it won't really matter) but for my two younger sisters.

My first return visit to my gyno oncologist is in July so until then, no news is good news!

Thanks again for the kind words and well wishes from all.


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## falmouth3 (Jun 14, 2015)

When I last posted, I knew that I had breast cancer, but although I'd had 3 biopsies, I still hadn't had my surgery.  They removed 3 areas.  One area that was cancer for sure, one that was 90-95% not cancer and another area that had "lit up" on MRI, but was too small to biopsy.  Turns out my one area that was cancer was small, they got it all, and the node was negative.  However, because it was triple positive, I'm being treated with Taxol and Herceptin, anti estrogen will start after my chemo is done.  First treatment wasn't good because I reacted to the Taxol.  Since then, they've adjusted the other drugs I get with it and chemo has gone well.  I'm feeling pretty good.  My hair started falling out a couple of days ago, but I've got my wig and scarves ready.  I'm ready to be a survivor too.  My onocologist thinks this treatment will completely wipe out the  cancer and the anti-estrogen will keep other cancers from forming as well.  

An online prognosis indicator also suggests that my lifespan will not be affected.

The thing that truly saved my life is that I've had benign findings for about 40 years. I've had it all, calcifications, cysts, fibroadenomas... In the last few years, I've had mammograms every 6 months.  They have been very diligent and have taken additional images if needed.  I've had friends who have told me that they haven't had a mammogram in years.  I've begged them to have it done.  Modern technology and medicine is fantastic, but we have to catch cancer early enough to stop it in its tracks.


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## taterhed (Jun 14, 2015)

You're not losing your hair.... You're starting a new 'doo' for the first day of the rest of your life.   There is nothing more lovely than a survivor's glowing face topped by a fancy scarf and a winning smile. 

Congrats. Thanks for sharing hope and joy with all of us. 


Sent from my iPad using Tapatalk


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## Timeshare Von (Jun 14, 2015)

falmouth3 said:


> When I last posted, I knew that I had breast cancer, but although I'd had 3 biopsies, I still hadn't had my surgery.  They removed 3 areas.  One area that was cancer for sure, one that was 90-95% not cancer and another area that had "lit up" on MRI, but was too small to biopsy.  Turns out my one area that was cancer was small, they got it all, and the node was negative.  However, because it was triple positive, I'm being treated with Taxol and Herceptin, anti estrogen will start after my chemo is done.  First treatment wasn't good because I reacted to the Taxol.  Since then, they've adjusted the other drugs I get with it and chemo has gone well.  I'm feeling pretty good.  My hair started falling out a couple of days ago, but I've got my wig and scarves ready.  I'm ready to be a survivor too.  My onocologist thinks this treatment will completely wipe out the  cancer and the anti-estrogen will keep other cancers from forming as well.
> 
> An online prognosis indicator also suggests that my lifespan will not be affected.
> 
> The thing that truly saved my life is that I've had benign findings for about 40 years. I've had it all, calcifications, cysts, fibroadenomas... In the last few years, I've had mammograms every 6 months.  They have been very diligent and have taken additional images if needed.  I've had friends who have told me that they haven't had a mammogram in years.  I've begged them to have it done.  Modern technology and medicine is fantastic, but we have to catch cancer early enough to stop it in its tracks.




This is really good news and you're right Sue, being vigilant and your own advocate is key to early detection and hopefully, a favorable prognosis.


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## falmouth3 (Jun 17, 2015)

taterhed said:


> You're not losing your hair.... You're starting a new 'doo' for the first day of the rest of your life.



Thank you.  You're right.  The new doo is my warrior look.


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## taterhed (Jun 17, 2015)

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## Beaglemom3 (Jun 17, 2015)

I wish you both healing and easy-day wishes.


At the Brigham Hospital/Dana Farber Cancer Institute here in Boston, there are almost daily advancements in treatment. They have a great commercial that I'd like to share with you both. 

http://www.dana-farber.org/About-Us...ate-of-the-art-treatment-for-your-cancer.aspx


So, stealing their line, I'd like to say..............you know that you have cancer, but what your cancer doesn't know is that you have us, your Tug friends, pulling & praying for you.

Thinking of you .


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## willowglener (Jun 17, 2015)

I am in a dragon boat team with many cancer survivors. They are the strongest and most positive individuals I've ever met.


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## Kay H (Jun 17, 2015)

Just found this thread. It is amazing how many people are survivors today compared to just a few short years ago.  I also think that those survivore sho share their story help others who perhaps are not there yet.

My family has a terrible cancer history, I have 1 sister and myself who have not had cancer out of the 6 of us and the other 4 have had 2 and 3 primaries each.

Needless to say I am very diligent on getting my mammograms and colonoscopies on schedule.

Thanks to all who shared their stories here .  I am sure you have helped several people by your openess.
.


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## Timeshare Von (Jun 17, 2015)

Kay H said:


> Just found this thread. It is amazing how many people are survivors today compared to just a few short years ago.  I also think that those survivore sho share their story help others who perhaps are not there yet.
> 
> My family has a terrible cancer history, I have 1 sister and myself who have not had cancer out of the 6 of us and the other 4 have had 2 and 3 primaries each.
> 
> ...



Glad you found us Kay!  I pray for you and your sister; that this horrible disease stirs clear of you.

The irony of my situation is that I always felt like I didn't have much to worry about regarding cancer.  My mom was the youngest of like 9 kids . . . and to my knowledge, there was no cancer with her siblings.  My dad was the youngest of four and no cancer with them either.  And none of my grandparents either.

I feel safe sharing today because I know others may not know anyone to talk to or to ask questions of.  I love TUG because when we're all brought together through timeshare ownership and vacationing; we have so much more in common.


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## Timeshare Von (Jun 17, 2015)

*My Ovarian Cancer Ribbon Bowling Pin*






I've seen them in the popular pink for breast cancer but never teal for OvCA.  I reached out to an airbrush artist who I knew through a mutual bowling industry acquaintance.  He did this as a custom piece for me.

I love it.  Right now it is in my home office . . . but eventually I will take it to work and put it on my desk there.


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## falmouth3 (Jun 18, 2015)

It's a lovely bowling pin, Yvonne.  I started bowling at age 37, when I started dating my husband.  It's a fun past time, but expensive in the Boston area.  I'm in one league a week and husband is in two.  Our partners might be surprised to see me in Sept, when I may have, if I'm lucky 1/4 to 1/2 inch of hair.


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## shagnut (Jun 18, 2015)

I am so glad we have so many survivors here.  I was diagnosed with CLL (Chronic Lymphacitic Leukemia )  My brother passed away from same diagnosis.  After a while I quit "forgetting" I had it , esp with the new medicine they put me on. Only side effect was tiredness.  Well, my Dr. quit (loved him) and was reassigned to a young Asian Genius Dr.  Wanted to know if I had ever been on chemo , besides the pill.  Told him no, other Dr didn't think it was warrented.  Don't really want it.  Compromise, blood test every month for 3 mos with a meeting soon.  Hope I don't need it.  If I do I know I can count on my tugger friends to be there for me.  Shaggy


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## falmouth3 (Jun 18, 2015)

Shaggy, does that have a genetic component to it?  This sounds like a good time to get another opinion.  My chemo seems to be going well, as far as side effects, but every treatment and every patient is different.  They have new techniques to minimize side effects so it might not be too bad.

Ask what additional benefit chemo might bring to you.  

My husband has a chronic low white cell count that is normal for him.  He's had it over 20 years and is very healthy.  His doctor wanted to do a bone marrow aspiration on him.  I had my husband ask how the results of the bone marrow might affect treatment.  The answer was that it wouldn't affect the treatment which is to do nothing.  So why go through a procedure that he didn't need.  We need to be proactive and question things that don't seem right or to get 2nd or 3rd opinion.  This looks like the sort of diagnosis/treatment that should get those extra eyes on it.

Best of luck and hugs!

Sue


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## shagnut (Jun 19, 2015)

Sue, I read that there is predisposition of CLL  to Jewish men who's family came from ? eastern/western  Europe. wherever Russia is )   My grandparents came from Russia. My Mom & Dad both died of COPD. Both grandparents died of leukemia, also my brother. My Moms sister & her husband of lung cancer (smoked) My brothers wasn't caught in time but they found mine in a routine blood work.  I went for 3 or 4 years with no treatment. Then last Sept started Imbruvica , a new drug that has had great results.  Will wait & see.  shaggy


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## pammex (Jun 20, 2015)

Sea Six said:


> My wife was diagnosed with cancer last year. So far, so good.  She is doing well, and hopes to be one of the "survivors" one day.  You have to make it 5 years from diagnosis to make that claim, but she has been told that should not be a problem.  Prayers for everyone going through this, and I appreciate your detailed post.



Not true as above, your wife became a survivor when she did not drop dead when told she had cancer.  

Thank you all for sharing and speaking up, as a survivor and breast cancer awareness advocate the more we speak the more cancer becomes just a disease and not something to hide.  We survive better when we can talk about it and not feel like we have cooties LOL.  

I am a 6 year breast cancer survivor, I have been thru the wringer and have residual side effects left from cancer. It has been hard but I am here to tell my story, so I survive.  I survived to travel as I lost a whole year of travels and I am traveling like crazy once again.  I might add, airplane travel has now caused me to be in a wheelchair for it and wear a compression sleeve but I still travel and car travel is a breeze with breaks. 

Welcome to the world of survivorship...and thank you for sharing.  Best wishes for long, happy lives.


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## taterhed (Jun 20, 2015)

I'm not particularly religious, but.....Amen Sister!. That about sums it up.


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## AnnaS (Jun 21, 2015)

Thank you for sharing.  Best wishes and continued good health for many, many years.


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## AnnaS (Jun 21, 2015)

Paumavista said:


> I was diagnosed with Anal Cancer during a routine first time colonoscopy (at 55) with NO prior signs or symptoms in August!!
> 
> I have been through chemo and intensive radiation.  I will be checked every 3 months to insure that the treatment worked.....it is still too early to tell conclusively.
> 
> ...




Judy - best wishes also and continued good healthy for many, many years.


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## PStreet1 (Jun 21, 2015)

I, too, was recently diagosed (endometrial) at Mayo Clinic in Phoenix, and had surgery to remove it.  The case was presented to Mayo's Tumor Board to decide what treatment should be done after that.  They wound up recomending more surgery to check lymph glands and following that with "at least" radiation and possibly chemo.  I felt that Mayo was a pretty highly recomended place to be going for treatment and didn't question it all that much immediately.

Both my children and my surgeon urged me to get a second opinion from M.D. Anderson in Houston because for years they have been the #1 cancer hospital in the U.S.  I decided to do that.  Their recomendation was completely different, and my case was presented to their board also.  They recomended no further treatment, but careful monitoring (every 3 mts. for the first year; every 4 mts. for the 2nd year, and every 6 mts. the 3rd year--and of course, immediate attention if I see any symptoms).

I'm repeating this information to say that a 2nd opinion is worth considering.  I was already at a top hospital and the 2nd opinion from another top hospital was definitely different.  It's your life you are dealing with; make sure you have the best information you can get before making a decision.

Another fact many people don't know is that top hospitals, like M.D. Anderson and Mayo, work with local doctors all over the U.S. to implement treatment; returning to Houston or Rochester or etc. is not necessarily required for the treatment and followup they recommend.

I would also like to pass on a financial tip:  if the insurance company pays you any money directly by check, call the hospital/doctor's accounting office and PAY BY LINE ITEM shown on the paperwork you get with the check.  I had a bill that dragged out for two years before it was finally resolved.  I had simply turned the checks over to the hospital to apply to the bill.  The amounts were applied, but not to the line items, and what started as a simple mistake in billing ballooned into a 2 year problem that was virtually impossible to get straightened out.  They told me then, "After this, NEVER PAY IN A LUMP SUM; take the time to talk to the accountant and do it by line item.  That way, if there is any mistake, the accountant can find the problem."


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## WinniWoman (Jun 21, 2015)

I agree with Pat on all points. Always get a second opinion on anything! And pay very close attention to the bills Period!


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## falmouth3 (Oct 23, 2015)

It's been a long 8 months since my fateful mammogram, but
1.  Surgery - DONE
2.  Chemo - DONE
3.  Radiation - DONE today.

I have one ongoing treatment every 3 weeks until August, but I'm free of most of the intensive treatments.  I'm feeling good and ready to be normal again and not a patient.

Sue


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## taterhed (Oct 23, 2015)

Welcome to the first day of the rest of your life and congratulations


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## klpca (Oct 23, 2015)

falmouth3 said:


> It's been a long 8 months since my fateful mammogram, but
> 1.  Surgery - DONE
> 2.  Chemo - DONE
> 3.  Radiation - DONE today.
> ...


Many congratulations!


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## WinniWoman (Oct 23, 2015)

Excellent! Many best wishes!


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## silentg (Oct 23, 2015)

Thanks to all of you for sharing your stories. I had skin cancer on my ear a few years ago. Did not realize how serious it was, until I had the procedure to remove the cancer. They were able to get it all and graft skin from behind my ear to repair the part of the ear that was removed. I have regular exams for skin cancer and also regular visits to my PCP. I have a blessed life.
Silentg


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## Blondie (Oct 23, 2015)

So happy to hear all of these stories of survival. My beautiful, amazing 34 year old daughter Amy was diagnosed with stage 3 clear-cell ovarian cancer and we lost her a short nine months later. She had amazing care at Brigham and Women's/Dana Farber and if they could not save her, nobody could. She has been gone over 4 years, and in the meantime I was able to donate a kidney to my best friend to save her life. That surgery was a year ago April, on my birthday, and she is doing great. I could not save my daughter, but I could 
save my best friend. I still feel lucky and blessed even thought I miss my beautiful girl every day. Best to all who are still fighting this horrible disease. Blondie


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## rapmarks (Oct 23, 2015)

may I ask you to pray for my friend with fourth stage cancer who went through a ten hour surgery Monday which the doctor thought was very successful and still has not awakened.


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## taterhed (Oct 23, 2015)

rapmarks said:


> may I ask you to pray for my friend with fourth stage cancer who went through a ten hour surgery Monday which the doctor thought was very successful and still has not awakened.



Warm thoughts and well-wishes.


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## falmouth3 (Oct 23, 2015)

Rapmarks and Blondie, 
So sorry to hear about your loved ones struggles. It's probably because my husband and I are so much more aware, but it seems that so many people are being diagnosed with different types of cancer.


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## Timeshare Von (Oct 23, 2015)

falmouth3 said:


> It's been a long 8 months since my fateful mammogram, but
> 1.  Surgery - DONE
> 2.  Chemo - DONE
> 3.  Radiation - DONE today.
> ...



Congrats Sue.  One day at a time as they say.  I hope your treatments have been successful!


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## Timeshare Von (Oct 23, 2015)

Blondie said:


> So happy to hear all of these stories of survival. My beautiful, amazing 34 year old daughter Amy was diagnosed with stage 3 clear-cell ovarian cancer and we lost her a short nine months later. She had amazing care at Brigham and Women's/Dana Farber and if they could not save her, nobody could. She has been gone over 4 years, and in the meantime I was able to donate a kidney to my best friend to save her life. That surgery was a year ago April, on my birthday, and she is doing great. I could not save my daughter, but I could
> save my best friend. I still feel lucky and blessed even thought I miss my beautiful girl every day. Best to all who are still fighting this horrible disease. Blondie



Blondie . . . my heart aches for every life that is cut short by cancer . . . but especially for those taken at such a young age.  OvCA is such a bitch too, seems to have no rhyme or reason.

What a wonderful thing you did for your friend.  My you both live long and healthy lives.


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## Timeshare Von (Oct 23, 2015)

rapmarks said:


> may I ask you to pray for my friend with fourth stage cancer who went through a ten hour surgery Monday which the doctor thought was very successful and still has not awakened.



Absolutely . . . prayers to your dear friend!


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## Timeshare Von (Oct 23, 2015)

falmouth3 said:


> Rapmarks and Blondie,
> So sorry to hear about your loved ones struggles. It's probably because my husband and I are so much more aware, but it seems that so many people are being diagnosed with different types of cancer.



I know, it is amazing, isn't it?

My BIL is my age and was diagnosed with kidney cancer about 18 months ago.  They removed one kidney and took a malignant mass out of the others.  He's NED ("no evidence of disease") post surgery without chemo or radiation.

When that news came, I was shocked and saddened that he was seemingly "so young" . . . only to have my own cancer show up about a year later.

I work in a small office.  One of the ladies (younger than me) is a breast cancer survivor (x2) and this past summer the one man in our office was diagnosed with prostate cancer (he's also my age - 57). He just completed his "laser knife" radiation treatments and now must wait 6 months to see if that took care of it.

I pray for everyone who has to deal with cancer, as a patient, survivor or loved one/caretaker.

Hugs to you all,
Von


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## rapmarks (Oct 26, 2015)

rapmarks said:


> may I ask you to pray for my friend with fourth stage cancer who went through a ten hour surgery Monday which the doctor thought was very successful and still has not awakened.



thank you all who prayed, he woke up this morning after one week.  His words were "I beat it"


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## taterhed (Oct 26, 2015)

that brought tears to my eyes


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## JudyS (Oct 26, 2015)

Hope all the survivors here are doing well!  I discussed on another thread that I have hereditary breast/ovarian cancer syndrome. (I have a bad mutation in my BRCA1 gene.) I was found to have Ductal Carcinoma in Situ (aka "Stage 0" breast cancer) in one breast, and had both breasts removed last November. I hope to have my uterus and ovaries out soon, although that has been on hold due to other health problems.




rapmarks said:


> thank you all who prayed, he woke up this morning after one week.  His words were "I beat it"


Pat, glad your friend is doing better!




Blondie said:


> ...My beautiful, amazing 34 year old daughter Amy was diagnosed with stage 3 clear-cell ovarian cancer and we lost her a short nine months later....


I am so sorry to hear of the loss of your daughter. Ovarian cancer is often due to hereditary cancer syndromes, especially when it occurs in young women. I strongly urge you to seek genetic counseling if you have not already done so. 




Kay H said:


> ....
> My family has a terrible cancer history, I have 1 sister and myself who have not had cancer out of the 6 of us and the other 4 have had 2 and 3 primaries each.
> 
> Needless to say I am very diligent on getting my mammograms and colonoscopies on schedule..


Kay, there is almost certainly an inherited cancer syndrome in your family. Even having *one *family member with two primary cancers (that were diagnosed before age 65 or so) is enough to warrant genetic testing. Have you and your family had genetic testing?

Colon cancer is the most common form of hereditary cancer. Colonoscopies are good tests--they reduce the chance of colon cancer death by about 50%. But, for anyone who has a genetic mutation that causes colon cancer, a 50% reduction in risk isn't enough. So, even with regular colonoscopies, it is important for you to get genetic testing. 

Mammograms have become quite controversial, and the best available evidence is that they don't reduce the risk of death at all. I know the big cancer charities (American Cancer Society & Susan G. Koman) have promoted mammograms for decades and still do. But the evidence is accumulating that mammograms find mostly slow-growing breast cancers that would never have become life-threatening, while missing most of the fast-growing, aggressive cancers. (Mammograms generally only find tumors that are one billion cells or larger. Aggressive breast cancers grow rapidly from a size too small to be seen via mammogram, to a size big enough to be felt by hand. So, the chance of an annual mammogram finding them isn't good.) If a woman has a genetic defect that substantially raises her chance of breast cancer, then mammograms definitely aren't enough.

The good news is that even if a parent has a hereditary cancer syndrome, each child has only a 50% chance of inheriting the syndrome. It is quite possible that one of your parents had a hereditary cancer syndrome, and that four of the six children in your family inherited it, but not you. 




I have learned a lot about hereditary cancer in the two years since I was diagnosed with a BRCA1 defect. It is believed that hereditary cancers make up only about 5% - 10% of all cancers. However, hereditary cancers tend to occur at much, much younger ages than regular ("sporadic") cancers. The result is that hereditary cancer causes many of the tragic cases where a young adult or middle-aged person dies from cancer. Yet, doctors and the public have been slow to do anything about hereditary cancers. Current evidence says that over 50% of breast cancer in women under age 50 is caused by a BRCA defect or by one of the other well-studied hereditary cancer genes. There are almost certainly other cancer genes that haven't been discovered yet. So, it's possible that a large majority of breast cancers in women under 50 are caused by hereditary defects, as well as many of the breast cancers diagnosed in women aged 50-69. But, the emphasis is still on mammograms instead. I find this incredibly frustrating and discouraging. 

In my case, there was no family history of cancer. However, I am from an ethnic group (Ashkenazi Jewish -- that is, Eastern European Jewish) that has an extremely high incidence of hereditary breast/ovarian cancer syndrome. About 1-in-40 Ashkenazi Jews have a BRCA defect. 

For reasons unrelated to cancer, I happened to get direct-to-consumer genetic testing from a Google-related company called 23andme (www.23andme.com). I was shocked when the results said I have a BRCA1 defect. The results were later confirmed by Myriad Genetics, the main company that tests for BRCA defects. I may have inherited the gene from my father. Men rarely get breast cancer and can't get ovarian cancer, so if your father has a BRCA defect, there may be no sign of it. 

I don't know how many people here are of Ashkenazi Jewish decent. But for anyone who is, I strongly urge you to get tested for BRCA defects through 23andme, even if you have no family history of cancer. (About 1/3rd of Ashkenazi Jews with hereditary breast/ovarian cancer have no family history of cancer.) The test cost only $99, it has a 1-in-40 chance of finding a BRCA defect, and if it does find a BRCA defect, it has a strong possibility of saving your life. (As a comparison, a single mammogram has about a 1-in-500 chance of finding cancer.) 

23andme will test anyone, of course, not just Jews. But, BRCA defects can occur in many different ways, and the company is still working on detecting the defects common in other groups. So, if you aren't Jewish, 23andme might still find that you have a BRCA defect, but it can't rule out BRCA defects in most people. (23andme tests for many other genetic defects as well, but most of them don't have important health implications. It also tests for ancestry and can connect you will relatives you didn't know you had -- which can be a good thing or a bad thing.)


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## Kay H (Oct 27, 2015)

Judy, thank you so much for taking the time for your informative message to me.  I was in the tamoxafin double blind study years ago as a tribute to my sister who died at age 38 from breast cancer.  She died in 1971, when chemo was in infant stage and still experimental.  I had the option of having the gene testing st no cost to me for being in the study.  I chose not to have it done even though I was much younger then.  The reason for refusing was that I figured just because you have the gene mutation does not mean you WILL get breast or ovarian cancer and just because you don't have the mutation does not eliminate you from getting either one.

My mother's and my sisters' breast and colon cancers were all post menopausal, which ups the chances.I am very diligent at getting my scans done and I am very aware of my chances. One sister had the genetic testing and none of us could believe that she tested negative for mutation.

Just as an aside, my dh's sister is scheduled for a lumpectomy tomorrow following a positive needle biopsy.  I am surrounded.


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## JudyS (Oct 28, 2015)

Kay, I'm glad you liked my message! I was actually worried that I might get an angry response (not necessarily from you, just from Tuggers in general) because of my comments about mammography. 

I hope your Dh's sister will be OK. A lot of breast cancers are actually not aggressive. (Unfortunately, ones that occur in younger women *do* tend to be aggressive.)

It's great that you were in a study to see if tamoxifen can prevent breast cancer! Did you ever find out whether you received tamoxifen, or just received a placebo? 

Your sister who had genetic testing -- I assume she was one of the four siblings who had cancer? It's quite possible that she had a mutation, but the mutation was unknown to science at the time she was tested. Many cancer-causing mutations have been discovered just in the past few years, so if she was tested more than a couple of years ago, it would be worthwhile for her or others in the family to be re-tested. 

In my case, I never really decided to be tested for cancer mutations. I signed up for testing through 23andme because I was hoping to get insight into some mysterious health problems I was having. (The genetic testing didn't give me any answers on that, but I eventually found out the mysterious illness was hepatitis, with resulting liver cirrhosis.) 

At the time I was tested, the FDA only allowed 23andme to tell people their "raw" DNA results (basically, a long string of the letters C, A, T, and G.) If a person wanted to know what that string of letters actually *meant*, they had to find a way to analyze it themselves. I used a program called Promethease, which is designed for use by genetics researchers, not patients. 

Promethease analyses a person's DNA and outputs a list of all genes known to affect health, in order of importance. When I ran Promethease, the very first thing it told me was that I had a defect in my BRCA1 gene, and that I was at extremely elevated risk for breast and ovarian cancer. (The second thing it told me was that I was female, but I already knew that.) 

I looked into the particular genetic defect I have, and learned I had about an 80% chance of getting breast cancer and a 40% chance of getting ovarian cancer. As I said, there is a lot of controversy about mammograms, and I'm firmly in the camp that believes they don't work. About ovarian cancer, there isn't even any controversy -- the screening tests we have don't usually find ovarian cancer until it's stage 3, at which point it is usually unstoppable.  

So, I didn't even consider relying on screening tests. Even before cancer was found in my right breast, I knew I wanted both breasts removed. I'm hoping to have my ovaries out soon, too. (Also my uterus, because cancer is starting there as well.)


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## Timeshare Von (Oct 28, 2015)

rapmarks said:


> thank you all who prayed, he woke up this morning after one week.  His words were "i beat it"



woo hoooooo!


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## Timeshare Von (Oct 28, 2015)

Judy S . . . thanks for the update and further info on your situation.  I read it with great interest since it is OvCA that I had and am current NED with.

I did have the genetic testing and was thankfully negative for the BRCA1 & 2, but did have a mutation of "undetermined significance" that is apparently turning up more and more for women with OvCA.

It is my hope that the data being collected through testing will help to pinpoint further genetic evidence for the causes of some of the gyno cancers that are still an enigma.

Again, thanks for sharing!


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## falmouth3 (Oct 28, 2015)

JudyS said:


> there is a lot of controversy about mammograms, and I'm firmly in the camp that believes they don't work.



I disagree on that point.  Mine was an aggressive cancer and it was found when it was small by mammography.  I'm thrilled that it was found early so that I could get it removed and have treatment before it spread.


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## JudyS (Oct 28, 2015)

Timeshare Von said:


> ...
> It is my hope that the data being collected through testing will help to pinpoint further genetic evidence for the causes of some of the gyno cancers that are still an enigma.


Ditto to that!



Timeshare Von said:


> ...it is OvCA that I had and am current NED with....


Yvonne, NED stands for No Evidence of Disease? Great to hear that!


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## JudyS (Oct 28, 2015)

falmouth3 said:


> I disagree on that point.  Mine was an aggressive cancer and it was found when it was small by mammography.  I'm thrilled that it was found early so that I could get it removed and have treatment before it spread.


Falmouth3, I'm glad your cancer was found early!

There is no question, a mammogram will sometimes find an aggressive breast cancer a few months before it would have become a visible or palpable lump. 

The problem is, mammograms also lead to:
1) Radiation exposure with every mammogram.
2) Probably about a million biopsies a year (in the US alone) that wind up finding nothing. (A breast biopsy is a low-risk procedure, but when you do a million of them, there will be some serious cases of infection.) 
3) Hundreds of thousands of women each year having surgery, radiation therapy, and/or chemotherapy for breast cancers that are non-aggressive and would never have gotten big enough to need treatment. (About three-fourths of all breast cancers are non-aggressive and would never have spread enough to cause the woman any problems. I know this is hard to believe. But my source for this is Robert Weinberg's textbook, _The Biology of Cancer_, and Dr. Weinberg is probably the most renowned cancer researcher in the world.) 

When women from the general population (that is, with no particular signs or symptoms already of breast cancer) are randomly assigned to either receive regular mammograms or not receive them, the women who receive mammograms do not live any longer, on average, than the women who don't. In fact, the best-done studies have shown that women who receive regular mammograms are very, very slightly *more* likely to die than women who don't receive mammograms. This seems to be because the radiation from mammograms damages the arteries in the heart, leading to a slightly increased risk of heart attacks. (It takes a long time to do these studies, and in that time, ways of doing mammograms have been found that require less radiation. So, it's possible that the risks of mammograms are no longer greater than the benefits.) 

For women at high risk (for example, women with certain types of breast abnormalities, women with a known mutation that raises their risk of breast cancer, and women whose family history suggests hereditary cancer), the benefits of doing mammograms probably outweigh the risks. But for women at high risk, just doing an annual mammogram isn't enough. Mammograms miss too many aggressive cancers. At the very least, women at high risk should have an annual MRI as well.

But I was presented with the option of an annual MRI and mammogram instead of a double mastectomy, and I said no. I believe we will never beat cancer by *treating* it. We will beat cancer by *preventing* it. 

That's why I think we should stop this huge "Breast Cancer Awareness" campaign designed to detect breast cancer after it has already occurred, and shift resources into preventing breast cancer in the first place. And, that's why I had both of my breasts removed. (Although if I had learned about my BRCA mutation at an earlier age, I would have had other options to prevent breast cancer, such as having my ovaries out and/or taking tamoxifen.)


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## DavidnRobin (Oct 28, 2015)

JudyS - for BC, especially certain types caught early - there are are drugs that qualify as curable... (defined as 5 year disease free). This is also true for a few other cancers...

however, I agree - prevention is best approach, but correlations between environment/life-style are challenging. A positive BRCA mutation dramatically increases risk, but not 100%.  Too bad smokers's addiction (nicotine) prevent many from doing anything about their addiction (not habit...) when the correlation is quite high (higher than BRCA positive for BC), and then find out too late where standard of care gives only a 50% increase in survival rate (~6 month OS to ~9 months...).


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## Blondie (Oct 28, 2015)

Judy S-  My girl did have genetic testing at Dana Farber- they found no genetic link. She lived in NYC near ground zero, and I always wondered about all those toxins. I do believe that ovarian was one of the cancers recently listed as being related to the 9-11 carcinogens.  I still will always wonder.
Blondie


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## Timeshare Von (Oct 28, 2015)

JudyS said:


> Ditto to that!
> 
> Yvonne, NED stands for No Evidence of Disease? Great to hear that!



Yes correct - no evidence of disease.  Sorry to use the jargon/acronym.

I have my next f/up with blood work next week so my fingers are crossed.

Thanks much!


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## JudyS (Oct 30, 2015)

Blondie said:


> Judy S-  My girl did have genetic testing at Dana Farber- they found no genetic link. She lived in NYC near ground zero, and I always wondered about all those toxins. I do believe that ovarian was one of the cancers recently listed as being related to the 9-11 carcinogens.  I still will always wonder.
> Blondie


It's so unfortunate that we don't have a better understanding of, and better treatments for, for ovarian cancer. My condolences.


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## JudyS (Oct 30, 2015)

DavidnRobin said:


> JudyS - for BC, especially certain types caught early - there are are drugs that qualify as curable... (defined as 5 year disease free). This is also true for a few other cancers.......


I should clarify, I definitely think many cancers can be cured. (And, as you are probably well aware, researchers are discovering that a lot of cancers -- the "indolent" ones -- are just not that dangerous to begin with. Hard for some to believe, but true.)

But as for getting rid of cancer entirely (or almost entirely), that will require advances in knowledge about why cells become abnormal, and how to stop them before they become fully malignant. 

Most reductions in particular diseases have come from prevention rather than treatment. This has happened with viruses such as smallpox, bacterial diseases such as tuberculosis, and is now happening with heart  attacks.


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