BRCA/Tamoxifen/Uterine cancer

BayouBabe

I am going crazy researching this, so thought I would start a new thread here.  Anyone BRCA +, on Tamoxifen, and worried about the new research that shows we are at risk for more serious endometrial/uterine cancers?  Tamoxifen already increases this risk.  In the last few months I have met two women (not BRCA+) who have gone on to develop this cancer after earlier Tamoxifen usage. So maybe meeting them and hearing their stories is just freaking me out a little bit.  I refuse to have another surgery to remove my uterus.  I am sick of this.  Take this drug to fight your BC, but it may give you another cancer, and since you are BRCA + it will be more serious.  Ugh!  I am seriously considering stopping the Tamoxifen.  Aromasin next??? I have already had horrible luck with Femara and Arimidex.  Not sure what to do.  Advice, anyone?  

BayouBabe

bump.  Anyone?

Jelson

BayouBabe - I have hesitated to comment on your post because I am probably older, I am not BRCA 1 or 2 +, I have not had invasive BC nor many surgeries related to BC or at all. I don't have the feeling of losing pieces of me, bit by bit or always being under the knife or in treatment.  However, I have had endometrial cancer probably caused by tamoxifen.  It was my understanding, based on the research I did after diagnosis, that most cases of tamoxifen induced endometrial cancer were in post-menopausal women. I had not looked into the BRCA related endometrial cancers.  All I can say is this, you are focusing on the tamoxifen. Is there research indicating that simply being BRCA + is related to these more serious endometrial cancers? I would hate to think that you stopped tamoxifen and still came up with such a diagnosis. I, myself, was very shook up by the information I read about endometrial cancer and was profoundly grateful that mine was very early stage and not the aggressive type and that I only had 7 lymph nodes removed (the gyno/onco/surgeons seem to be behind the breast surgeons in trying to preserve lymph nodes) and that I avoided radiation, much less, chemo. Think about how difficult/impossible it is to avoid other organs when radiating the pelvic area.

http://www.foundationforwomenscancer.org/

farmerlucy

Here is an interesting chart from Myriad that shows various gene mutations and their associated increased risk. BB - Sorry I have no answers. Jelson -  I hate that you had the endometrial cancer, but glad you caught it early.

https://www.myriadpro.com/myrisk/why-myriad-myrisk...

inks

I'm BRCA1+ and planning my oophorectomy this fall. I was hoping to quit tamoxifen and go on aromatase inhibitors because of the risk of uterine cancer. It never crossed my mind that I could have bad SE from AIs. I hope Aromasin is more tolerable for you. Or could you still continue Tamoxifen but do check ups for uterine cancer frequently? This thing totally sucks that one thing tends to lead to another.

BayouBabe

Thanks everyone for responding.  I can't seem to post a link from my ipad, but the article/study I am referring to is on medscape and published in March of 2014.  Seems BRCA 1 women had a doubling of the risk in this study and they were the more aggressive type.  Research is still new, so no changes are YET being made in doctors recommendation about removing uterus, but no discussion has been made about the increased risk the Tamoxifen adds in ADDITION to this risk.  Jelson - I am postmenaupausal from the ooph. I had due to my BRCA.  Farmerlucy - great chart that I had not seen before, but not up to date with newest research unfortunately. Inks - my doctors will not do any extra surveillance unless I have bleeding.  What scares me is the more aggressive nature of the cancers that the BRCA women are getting, so not sure extra surveillance would even help.  In Michigan, the doctors seem to know very little about BRCA and simply treat me like everyone else.  I am doing my own research and frequently bring things to the attention of my doctors.  I asked my MO about this at last visit, and she told me to continue until next appointment and she would research in the meantime.  I still have two kids at home, so thinking of getting another cancer scares me.  It seems from the info that I have been able to dig up, that risk does not decrease with time after being off of the Tamoxifen, but that the increased risk is there for ANY prior Tamoxifen users/BRCA women.  So I hesitate to take it even another two months until my appointment in October.    I am so burned out from difficult choices.

Jelson

I was followed with tvus every 6 months or so for the first 3 years of taking tamoxifen - and thickened uterine lining was found and over the course of that time I had two d&cs, but then the gyno switched to the usual monitoring which is, as you say, check out any unusual bleeding which ultimately is what led to my diagnosis. what I found subsequently ( I think it was on the American Cancer Society site) was that a discharge is another symptom which often precedes bleeding.  I had a light brown discharge, just a little panty stain really, that always washed out- no discomfort or odor for several months before the bleeding.  I attributed it to the tamoxifen, but in retrospect I believe that it was the first early warning sign of endometrial cancer.  My surgery was a complete hysterectomy, I mean I still have my tonsils and 3 wisdom teeth - so I thought I might get all weepy about losing lady parts, but the surgery and recovery were quick, mainly because the surgery was laproscopic and I do not need any follow-up treatment and feel one less thing to worry about.

I am so sorry you are in this situation BayouBabe.

BayouBabe

Thank you Jelson.  I would be lost without my sisters here on BCO.  I am glad the hysterectomy went well for you.  

So many people tell me to just take the meds, but my quality of life was so greatly impacted on the AI s.  And with the Tamoxifen, when the benefits are about equal to the risks, I find it hard to justify it is worth the risk.  I feel like I am about to have a nervous breakdown the last few weeks as I agonize over these decisions.  I am not looking forward to the lecture I know my MO will give me.  Like I haven't agonized enough over this, or thought through everything.  I reread the list of symptoms from the AI s, and I just don't think I can go there again.  I cry just thinking of the side effects I suffered through.  I want to enjoy my life, not endure it.  

Jelson

BayouBabe- I feel your pain, sometimes when faced with a decision - seldom as big as what you are faced with now, I go round and round, can't sleep and literally make myself sick. Sometimes it helps me to lay out my choices. Actually a chart is better, x axis - the choices, y axis - all of the possible outcomes - positive and negative. it doesn't give you the answer, just a new way of thinking about and looking at the problem.

you are BRCA1 and ER+? and have had bad side-effects with AIs, you are therefore taking Tamoxifen now.

it is now speculated that BRCA1 increases the risk of uterine cancer.

Tamoxifen increases the risk of uterine cancer. 

How do you avoid uterine cancer and breast cancer?

Stop taking Tamoxifen ( thereby decreasing your risk of uterine cancer but increasing your risk of breast cancer. You still have whatever risk of uterine cancer there is from BRCA

Stop taking Tamoxifen and try a different AI, try the same AIs again - If you can tolerate the side effects, You will reduce your risk of breast cancer but still have the whatever risk of uterine cancer there is from BRCA

Hysterectomy - another damned surgery!!!   remove risk of uterine cancer, Take tamoxifen or AI to reduce risk of breast cancer.  

Hysterectomy - another damned surgery!! remove risk of uterine cancer but don't take Tamoxifen or AI to reduce risk of breast cancer. 

cyber-hugs

BayouBabe

Jelson - thanks for writing it out for me.  Helps to see it in print.  Those are the same frustrating choices that have been going around my head.  I have narrowed it down a bit.  My choices now are: 

1) Femara for a second time for as long as I can manage.  OR ...

2) Try Aromasin for the first time and hope for the best.  

Tamoxifen and Arimidex are off the list - scratched off with the largest black marker my brain could locate!  No more surgeries either!  After this last choice I can quit if need be and know I truly gave it my all.  No regrets and looking back allowed.  Just wish for once there was an easy choice that stood out as the best and obvious choice.  I have also decided to remain off of the Tamoxifen until my next MO appointment at the beginning of October.  Each day I feel a little bit better and more like the old me - I feel I have earned this break and then some!Hopefully, with this narrowing down of choices, I can begin to relax and trust in my gut.  My family is behind me with whatever I choose.  Love them for that - I am so lucky to have them.

Jelson

glad you are implementing a plan, hope you continue to feel better and better everyday!

JRM

Hello, I know this post is old and I am not sure if anyone is still monitoring it. I am new to this website. Recently Dx BRCA2 +. I've had an oophorectomy and lumpectomy in 2014. I now have to make the decision, prophylaxis mastectomy or do I take preventive cancer meds. My doctor has suggested Raloxifene over Tamoxifen. Was this an option at this time and if so did your doctor offer you the choice?

farmerlucy

I was offered Raloxifene as a preventive med before my diagnosis.

BayouBabe

JRM - I, unfortunately, did not get the chance to take anything preventively. Found out I was BRCA+ after my cancer diagnosis. Since you have had an ooph, could youalso try one of the AIs?

CarrieBelongs

I just found out I have BRCA2 mutation. I did two horrible years on Tamoxifen. It wasn't until I was on Tamoxifen that I researched it and learned the risks. My cancer went crazy, multiplying every month on Tamoxifen. My doctor refused to help me off of it. He wanted me to stay on it to see what happens even though my cancer was getting out of control. In hindsight, I greatly regret any time I spent on Tamoxifen, especially now that I know I have the BRCA2 mutation. I would not have even started it had I known what I know now both about the drug risks and about my BRCA2 mutation. Wouldn't a genetic counselor know? I don't really trust the average oncologist to help with this decision....obviously, from my experience with that first oncologist.