deciding if its necessary to remove overies after bilateral mastectomy and chemotherapy

I strongly feel that the only reason I am alive today is because of the 7 years of tamoxifen that I completed.  I was Stage 3  ER and PR + back in 1987 and my prognosis was grim.  I did chemo, radiation, mastectomy and tamoxifen.  Without the tamoxifen, back then, I had about a 20-25% chance of making it 5 years.  The only new kid on the block was tamoxifen.  It had mainly been used in postmenopausal women back then, but I went for it because my onc thought it would work.  I then had an unexpected remission of 18 years.  I am Stage 4 now (spread to bone, lung and liver).  Cancer is a sneaky, nasty bi*ch from hell.  I would not put myself at risk.

I know the therapies are difficult - I have had most of them.  I am not trying to scare you, but I would definitely do what my onc recommended.  If you have doubts, see another onc and get a second opinion.  But do not blow off the diagnosis.  Good luck!

Darcey said:

Hello and thank you!

I think the reason that the tamoxifen scared me was because of all the side effects people were telling me Id have early onset menopause, bone and muscle pain, sexual side effects, and possible ovarian cancer in the future. I was like, geez ill take my chances, because I know a girl who took it and still it spread to her liver and she lost her battle to it anyway. I also justified it because I lost my period during the chemo and didnt expect it to come back due to my age but low and behold, here it is again, but I feel SO normal with it back, my sex life is great again, I have no fatigue, i feel good for the first time in a year. So the thought of taking all that away to MAYBE save myself from a future reocurrence seems like a bad choice but I know its really not. I understand whats happening and I do think I should have them out I am just really MAD that i have to give up some of the best years of my life and suffer with the side effects of throwing a switch on my estrogen and my happy sex life with my husband of 21 years who is so wonderful . Its hard...thats all I mean....

Does your husband know about your choice not trying Tamoxifen ?is he comfortable with your decision? tamoxifen helps many not everyone has side effects and many live happy life . return of periods means that you still produce high level of estrogen. That is why your oncologist is very concern . did you have radiation? At least try and see 

hugs

Hi Darcey

My mum took Tamoxifen for five years (the norm until recently) and got two more breast cancers straight after.  But she was a heavy smoker, not a drinker.  I was a drinker, never a smoker.  I now don't drink (helps keep that weight off).  After bilateral and chemo only and a couple years of a tamoxifen I stopped taking it.  Uterus lining had thickened with a large polyps, probably due or made worse by it, also have jaw bone desease which chemo can bring on.  Honestly, you must make up your own mind.  I have absolutely no sex drive what so ever.  It doesn't bother us as my hubby had a heart attack the same time as my breast cancer came along, the meds he takes has made him the same as me in that department.  So we are ok with it whereas you are not, understandably.  If they suggested taking my ovaries out at my age I would do it but I am now through 'the change' and hot flashes are nearly gone.Tamoxifen by-the-way made life unbearable with hot flashes I had them literally all day and night.  The bed was drenched down to the mattress, I could not leave the house without a hand fan.  Could only wear cotton, linen and looked six month pregnant no matter what I did.  Much happier now.  Gone for quality of life instead of quantity.  Weigh things up and talk at length with your medical staff, and husband.  We are all very different.  Good luck to you.

CypressCynthia said:

I did not have that bad of a

I did not have that bad of a time with tamoxifen.  Honestly.  My biggest complaint was the loss of libido.  Other than that, I thought the rest was easy - especially compared to chemo.  We are all very different.  I have had some nasty adverse effects from other therapies, but I would still do them all again.  I am alive and functioning well and heading off to NH for a holiday in a couple of weeks.    As a 27 year old timer, I believe, if there is a reason for me being here, it is to encourage, not discourage others from staying the course. 

I do believe that I am a long term survivor because of my adherence to therapy.  Statistics are dismal with breast cancer survivors adhering to therapy (~50% complete full therapy).  It worries me silly to think of the risk that women expose themselves to without fully realizing....

Important facts re compliance from ACS:  http://www.talkaboutrx.org/documents/HCP_Fact_Sheet_Handout.pdf

From the British Journal of Cancer: "Women with low adherence are at greater risk of all-cause mortality, and fewer years of high adherence is also associated with increased breast cancer-specific mortality and recurrence. Non-persistence with adjuvant endocrine therapy occurs in nearly half of patients prescribed treatment over the recommended 5-year course. Patients should be encouraged to take their medication on a daily basis for the full 5-year period, to ensure their best chance of survival."  http://www.nature.com/bjc/journal/v108/n7/full/bjc2013116a.html

From the Am J Pharm Benefits: Suboptimal adherence to hormone therapy was associated with higher medical costs across a 4-year period. Early adherence-enhancing interventions have the potential to improve health and economic outcomes in women with breast cancer. : http://www.ajmc.com/publications/ajpb/2013/AJPB_MarApr2013/Hormone-Therapy-Adherence-and-Costs-in-Women-With-Breast-Cancer#sthash.MTIIVAX4.dpuf

 

Every so often the anti-estrogen therapy and Tamoxifen in particular topic is surfacing in our discussions. Benefits versus side effects, scientce behind preventve measures like Tamoxifen  and quility of life with and without cancer and the future. This topic always makes me sad, because we respect the choice everyone is making for thmselves and do not want to scarry, instead to educate each other. I have been on the both sides,  a poor metabolizer of Tamoxifen, reading a lot about this drug and feel comfortable on it, experiencing unbearable side effects from generic Arimedex, and having progression to my bones. you need to trust me - there is a very Little quility of life if your cancer has spread. Please do everything that in your power to prevent it, aboid and find a way to mitigate side effects (if you have not try, you do not know). Sometime recurrence  still can happen, even for those who has been following doctors orders. BTW I was 46 at the time of my initial diagnosis, my menopause was induced by agressive Chemo and I was told by my oncologist is that the goal is to keep me in menopause by all availble means. I also was told that the more time goes by " cancer free" the less likely it will return. That is why the fist years of high adherence to anti-estrogen therapy are the most critical. I am really wonder that Darcey you are skipping Tamoxifen right after finishing Chemo.

I wish everybody the best and hope nobody will ever face cacer again.

Hugs 

Darcey said:

Thank You Everyone

Thank you to everyone for your thoughts. I appreciate them very much. I have made a decision to have my overies taken out ASAP. Its such a sad situation all around but I think I am comfortable with this. 

 

I dealing with the same situation. I had a mastectomy, chemo, and radiation. My dr. Put me on anastrazole first and it kept my period away for almost a year. Then I was switched to tamoxifen which still didnt work. So I am back on anastrazole and a once a month Lupron shot to rid of any estrogen. I will be continuing this schedule for the rest of the years, then have to decide if I want my ovaries removed. Im 33 so this is so sad for me as I wanted one more baby. But I have to do whatever it takes to beat this so I can be here for the 2 girls I have. I think u are making the best choice for your health. Good luck.