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Old 07-05-2002, 02:16 AM   #1
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ImateacherandMynameisLynn HB User
Lightbulb I declined chemo & had my ovaries out instead

This is an "I-declined-chemo-and-got-my-ovaries-out instead-and-lived-to-tell-about-it story:

Hi,
I have never met anyone who did what I did, and just want to share my story. Five years ago I was diagnosed with breast cancer at the age of 38 (invasive ductal carcinoma, stage II, plus DCIS, ER positive). I had no family history of breast cancer and had never smoked or done drugs. I'd been a dancer and runner and was otherwise very healthy.

I had a lumpectomy, but declined chemo, radiation, and axilary disection, got married, and got pregnant with twins (!) right away. I declined chemo that first time because I knew it would probably wipe out my fertility and I just HAD to try and have children. (By the way, right after I got pregnant I read about that Danish study where women who have children after breast cander diagnosis live longer than women who don't, so that made me feel good!) I declined the radiation after I did library research that indicated that it had no effect on survival, just reduced the chance of local recurrance.

The bummer was that I got a local recurrance seven months after the babies were born. (I had fraternal twin boys who weighed 6.11 lbs. and 7.3 lbs. Whoppers! The pregnancy was completely normal. They are wonderful, smart, fun kids.)

I had a lumpectomy and (separately) a sentinel node procedure with the famous Dr. Guilliani which revealed "micrometastis" to the sentinel node. So now I was stage III and needed to have a full mastectomy. I cried all the way home from the appointment where I found out that I had lymph node involvement.

I have a Ph.D. from UCLA, plus I'm a college professor, so I know my way around university libraries, so I embarked upon a second round of intense library research (the first round occured two years prior when I got my initial diagnosis). I found information at the UCLA Bio/Med Library about the removal of ovaries, or "oophorectomy," as an alternative treatment to chemo for estrogen positive pre-menopausal breast cancer patients and set my mind to do this and avoid poisoning myself. My gynocologist who'd delivered my twins said she wouldn't do it unless I had an oncologist who would endorse the scheme. She'd never heard of this. They do oophorectomies for breast cancer much more often in England and Scotland and Europe, but hardly ever in the US.

My husband and family dragged me to seven oncologist consultation appointments (UCLA Revlon Breast Clinic, USC, John Wayne Cancer Clinis, plus other big shot names.) I always took along my research articles and said I wanted to get my ovaries out and skip chemo. None of them had ever heard about this. One guy said, "Are you crazy, lady? Don't you want to live to see your children grow up?" They all talked down to me and said I had to have chemo and that they knew just the perfect cocktail/regimen to put me on. Finally, I found oncologist, Dr. John Link, who knew about the research statistics I had and agreed that it was a completely reasonable treatment choice for me. I ended up have 11 hours of surgury at USC. I had a simultaneous mastectomy, oophorectomy, and "tummytuck" Free TRAM reconstruction (where they make you a new boob out of your transplanted tummy fat).

It's now three years later. My kids will turn 4 in November and my bloodwork is normal and I have no signs of recurrance! So far, so good. With no ovaries, I am menopausal, of course. I have hot flashes, but they are not dibilitating. I have also gained weight, but I'm not sure if this is due to menopause or because I like ice cream. My husband and I do use Astroglide (a wonderful product) when we fool around, as I don't have normal vaginal lubrication. My worst symptom I'd say is pretty bad insomnia, although I'm not as bad as I used to be. When I had those ovaries, I could sleep 9 or 10 hours at a time, but now I can only hope for 5 1/2 or 6. Sometimes I have a hard time falling asleep and I can't stay asleep; I wake up a lot. To be totally honest, I would have to admit that I'm not as "up" and cheerful as I once was. My readings suggest that this (slight depression) can be related to menopause, too, but I don't know, maybe it's related to CANCER! My last symptom is memory loss. I can't remember a %$#@ing thing, like I used to, but my other friends with kids swear that pregnancy makes you lose your mind. Hmmm.

But on the whole, I'm glad I avoided chemo. Statistically, I have achieved the same survival benefit as undergoing chemo. For me it was the right choice.

It amazes me that US doctors don't know much about oophorectomy as a hormone therapy for breast cancer. It seems that breast cancer patients should be given ALL their options before they my their choices.

But then again, an oncologist sees maybe $25,000.00 walking through the door when a breast cancer patient walks into his office, right? How much would an oncologist make if he or she refered the patient to a surgeon for an oophorectomy?

If your tumor markers are estrogen receptor positive and you're premenopausal and you haven't made your treatment decisions yet, you might want to go to a medical school library and do a Medline search or journal article search on "ovarian ablation and breast cancer" and "oophorectomy and breast cancer," before you let your oncologist sign you up for chemo. At least you'll be more fully informed about your options.

My husband wants me to write a book about my experience with the oncological community and fighting cancer on my own terms. Maybe I will if I can find the time! This is the first time I've written anything at all about this. Let me know if this helps anyone.

Best wishes to you all.

Lynn

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Old 07-12-2002, 04:31 PM   #2
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chelan HB User
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Good for you for standing up for what you wanted! You wouldn't have been happy if you would have settled for chemo or radition. You are very lucky to have such a supportive husband and family. Your treatment option may not be for everyone but I'm glad it's been successful for you.

My best wishes to you.

p.s. I think you should write the book because I think it will make you happy! Go for it!


 
Old 08-04-2002, 06:17 PM   #3
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I don't think I can go your route but I have some of the same issues. I am 31 years old, my cancer is invasive and estrogen positive. My doctors want me to have chemo and enter a trial for herceptin. Additionally they want me to take tamoxifen. This is very upsetting due to my age. My husband and I will have our 1 year anniversary in September and we were trying to get pregnant when I was diagnosed. Is waiting 6 years before I get pregnant my only option? I have research to do but could use anyone's opinion. Haven't talked to too many people with experience.
Any help would be great!
Lalla

 
Old 04-03-2008, 02:22 PM   #4
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Re: I declined chemo & had my ovaries out instead

Hi, I recently had a mastectomy after being diagnosed with breast cancer. I am stage 2, ER negative, PR negative and HER2 positive. I am extremely opposed to chemo, mostly because they seem to have tons of research on how many people die if they don't take it, but little on the long term effects if you do. I am only 42 and have talked to so many people who have side effects that have lasted many years and probably will last their entire lives. Of course there isn't an oncologist on the planet who will tell me chemo isn't necessary. Why they don't have a test for cancer is pretty amazing to me. They sure are able to find plenty of drugs and chemo to make the drug companies rich, but nothing to even tell you if their drugs are doing anything. I would love to know if there is any avoidance tactics a person who is HER2 positive can use, being negative to all the other receptors. Did you happen to run into any research in your pursuit for your chemo avoidance surgery?

Thanks

 
Old 04-05-2008, 07:43 AM   #5
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Graywren HB User
Re: I declined chemo & had my ovaries out instead

I think it's dangerous to encourage women with breast cancer to go against their oncologists' wishes. I followed my doctor's advice to the letter and I'm glad I did. These people spend their lives dealing with cancer and if you have a trustworthy doctor, I say follow his advice.

 
Old 04-06-2008, 12:48 AM   #6
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Mamasan2007 HB User
Re: I declined chemo & had my ovaries out instead

The original post was from 2002, I wonder how she is now...

 
Old 04-09-2008, 12:53 PM   #7
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Laura B HB User
Re: I declined chemo & had my ovaries out instead

You right, *******, that is 6 years ago. I'm going through chemo right now even though they said "they got it all." Oncologist said it is better to take some treatment, just in case, than trying to chase after cancer 2 - 3 years later. I have to take 8 treatments of chemo and then radiation. No fun, but without the treatments I would go through life wondering if the cancer shows up again?
Laura

 
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