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Frustrated with stock answers from Oncs Frustrated with stock answers from Oncs

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  #1  
Unread 05-03-2009, 09:31 AM
Frustrated with stock answers from Oncs

Hi,

I am 49 and have a complex cyst on one of my ovaries, I've had breast cancer, and I have a familial breast cancer and ovarian cancer risk (not what is termed "hereditary" as defined by the presence of known gene mutations). So far, everyone I've seen recommends at least removing both ovaries, without any regard for how my surgical menopause will be handled since I'm not a candidate for hrt, and what other risks will be introduced if I go ahead and do this (see the Ovary Removal Or Not article on this site).

I'm am frustrated and shocked that this type of stock response is so alive and well today. Why not recommend a pet scan or an mri to further confirm or dissipate the need for removal of both ovaries? What about the use of other measures to counter effects of Tamoxifen? Again, to date, no credence has been given to any of these other options, and my experience has been that they do not look at the whole person and risks to each as an individual when making recommendations. I think this is awful. Maybe they think they are saving our lives, when actually, they really could be making it worse. I want to take back the control over my options, but it is so hard to get info I need. They just want to shove one answer down your throat: double oophorectomy.

What have others' experiences been?
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  #2  
Unread 05-03-2009, 03:04 PM
Re: Frustrated with stock answers from Oncs

Welcome kc~
You seem very level-headed about this. Your concern about the quality of life that you will have after surgery is good because you are thinking beyond that initial fear. I have not been in your shoes. I hope that you get responses from some of our sisters who have. Perhaps you could discuss the possibility of removing one ovary and both fallopian tubes since some of the more recent research suggests that the more aggressive, hereditary forms begin in the tubes. Just a thought. All the best to you!!!
  #3  
Unread 05-03-2009, 04:04 PM
Re: Frustrated with stock answers from Oncs

Hi kc2009!

In the weeks prior to my hysterectomy, I wrestled mightily whether to have my ovaries removed at the same time. I was aware that I had a cyst on one of them, but was told by my gyn that in his opinion it was likely benign because of its size. He told me that ovarian cancer can't be determined ahead of time; only based on clinical observations afterwards which I assume means a pathology report. At the time I had my surgery, no PET scan, CT scan, MRI or any other pre-op test could diagnose ovarian cancer. I asked my family physician the same thing and he agreed. (My surgery was six years ago so diagnosing ovarian cancer prior to "getting in there" may have advanced during that period.)

Anyway, I asked a lot of questions regarding a prophylactic oophorectomy. Even though ovarian cancer does not run in my family, many other types of cancers do. As a twist of fate would have it...I came down with colon cancer four years after having my ovaries removed. In hindsight, I guess I was concerned about the wrong organ(s).

I ultimately decided to have my healthy ovaries removed. Luckily, I can take HRT and it works well for me in preventing hot flashes and other surgical menopause symptoms. I don't know if my decision would have been the same if HRT was not an option for me.

  Quote:
Originally Posted by kc20009
They just want to shove one answer down your throat.
During my decision-making process, no one shoved anything down my throat. To the contrary -- when I asked my gyn his recommendation about an oophorectomy, he replied, "It's up to you." He wouldn't even hint one way or the other which at the time I would have appreciated. I said "yes" to the oophorectomy at me pre-op appointment with him. He asked me the question again when he met with me before I went into the OR. I was always the one in charge.

I think it's good you are asking a lot of questions of your medical providers. No matter what you decide to do, the fact that you did the best you could in the decision-making process should serve you well in terms of peace of mind.

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  #4  
Unread 05-03-2009, 07:11 PM
Re: Frustrated with stock answers from Oncs

Thanks for taking the time to respond. I'm really concerned about the mentality in the medical community where I live about this. If I get the same response from this next dr I'm seeing, I'm afraid to have them even do the surgery to take the one ovary out for fear that they will overreact and take everything out at once. I will seek another opinion in another place, like Fox Chase in Philadelphia.

I'm so glad you've had such a good response. Best wishes to you.

kc
  #5  
Unread 05-03-2009, 07:13 PM
Re: Frustrated with stock answers from Oncs

Thanks for your support!
  #6  
Unread 05-03-2009, 08:40 PM
Re: Frustrated with stock answers from Oncs

I hope you get a different reception from the next DR you consult regarding this issue.

I have gone through it "backwards" relative to your experience... I had a hyst with oophorectomy in 2002 and was diagnosed with breast cancers in 2004 and 2006. However, I started on HRT immediately after my ovaries were removed and have stayed on it since then.

After my first bc diagnosis, I consulted a highly regarded oncologist at a nearby teaching hospital. Her immediate response was that I must get off HRT and on Tamoxifen. I asked her why, and she had no answer other than that that was what she has everyone do. I asked her, if I still had working ovaries, would she be insisting that I have them removed? She said "of course not". To me, that made no sense - to insist I stop HRT, which is the same hormones in lower quantities than what my ovaries made, but to say that if I still had my ovaries she'd not recommend removing them? That, coupled with the general lack of compassion I experienced there, led me to decide that she would not remain as my oncologist.

My current oncologist is fine with my decision to use HRT. She doesn't prescribe it because she doesn't feel she knows enough about it to do so, but she doesn't insist that I not stay on it.

I've heard more women say their DRs insist on ovary removal if they still have their uterus, so that they can go on Arimidex instead of Tamoxifen (Tamoxifen greatly increases the odds of getting uterine cancer); I have not heard so many post-hysterectomy women diagnosed with breast cancer being told that they must have their ovaries removed. After all, Tamoxifen works fine in women with ovaries (or on HRT), and without the risk of uterine cancer to worry about there doesn't seem any real reason to have the BSO.

Take your time, do your research and don't let anyone push you into something you don't feel ready for or comfortable with. Once your ovaries are removed, they can't be put back; HRT is not an exact substitute no matter how well you do on it, plus it can be expensive - ovarian hormones are free!

Good luck with whatever you decide to do.


-Linda
  #7  
Unread 05-04-2009, 07:07 PM
Re: Frustrated with stock answers from Oncs

Thanks Linda. I agree that taking tamoxifen while having your ovaries out doesn't make any sense. Tamoxifen is for pre-menopausal women now. And my BC onc told me I would not have to take an aromatase inhibitor if I got my ovaries out.

This gynoc I'm going to tomorrow has written over 200 papers and has 26 years experience. I'm hoping that he will be able to answer my questions.

kc
  #8  
Unread 05-05-2009, 01:02 PM
Re: Frustrated with stock answers from Oncs

I understand your frustration completely as I have experienced it myself.

I had stage 1 breast cancer 5 years ago and stock answer was Tamoxifen. No one - not one Dr. worried about Uterine cancer and all risks were minimalized.

Stock answer was we'll see and treat if this becomes a problem in a far way future.

Now I am post a D & C last week with abnormal uterine growth (thankfully paths are B9 but a total Hyst is still the diagnosis anyway.)

I have posted a query about Tamoxfen/progestin mix as I am finding in preliminary research that that may have prevented the uterine thickening my gyn/onc is now recommending a total Hyst for because she is trying to prevent a future cancer because Tamoxifen causes cancer.

The problem with many Doc's is they have a very narrow scope of interest. I really do believe they get to a point where patients become like just one more assembly line job. They have a stock answer for each depending on their specialty - surgeons cut stuff out - toal HYST - end of uterus - end of problem - oncologists prescribe Tamoxifen -estrogen blocker for estrogen receptive cancer - end of problem .....without really looking at the total picture or what these side effects might do to us.

This is the quick fix for now - we'll deal with the "fall out later". This is why I have come not to toally trust doc's mine are all top rated and still they go with the "gold standard" for their specialty and do not consider total care - quality of life or alternatives to lessen the effect of large scale health initiatives.

Had I known what I know now I would have spoken to an endocrinologist to get a more full picture of what total unopposed estrogen dominance could do to my uterus. I would have spoken to someone who had a more whole body approach to cancer care. I am lucky the Paths were benign but I will not do total Hyst with out researchingthis further and you shouldn't take a stock answer without investigating further yourself.

After all it is all about us this time.
  #9  
Unread 05-05-2009, 05:31 PM
Re: Frustrated with stock answers from Oncs

Thanks MK2. Hmmm...I hadn't thought of an endocronologist. One thing I do find hard to believe is that the great increase in the size of my ovaries and the cysts is NOT related to the Tamoxifen. I've never had this problem until a year AFTER I started it!!! To me, it seems like there is a likely correlation. There is nothing else different about me, other than being 19 months older than when I got my last ultrasound. I was peri-menopausal then and I still am.

Good luck on your research and in your journey!
  #10  
Unread 05-06-2009, 08:03 AM
Re: Frustrated with stock answers from Oncs

From numerous people I've spoken to the Tamoxifen it has weird effect on people. Some people show anomoly right away, some not at all.

In any event, it is not harmless and even though we play a risk vs. reward game with it - it still can be buffered by looking at the total hormonal picture. Doc's only see part of the story unless they are hormonal specialists.

I am coming to believe that even though this is not an "endocrine problem" per se a specialist in hormonal imbalance will know more than many of your garden variety oncs about the complexity of keeping this all together in a way that won't make us seriously injure on part of the body while trying to save another.
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