Post-DCIS but now hysterectomy??

lsugirl

Post-DCIS but now hysterectomy??

lsugirl

Hi everyone - it's been a long time since I've been on here - guess it brings back my early memories of the emotions you go through but fortunately I'm doing great - finished with EVERYTHING!!  YEAH!!  Of course I always worry if there is a chance it will come back even though it was NOT invasive - I read several posts on here about small recurrences so I'm very vigilant with my doctor appointments - seems I'm seeing someone every 3 months so all covered. 

Here's my next dilemma - to go back on the pill or have full hysterectomy (including ovary removal)?  I have had endometroesis my entire life (I'm 41 and was dx at 14 and on pill for 22 years before getting married and no success with IVF) and I'm tired of my heavy periods and the pain that I have now with them.  Because my DCIS was 96% estrogen positive my gyno is not sure about either options b/c they would involve some type of estrogen treatment. 

If my DCIS was NOT invasive couldn't I take BCP again until I get to menapause and then go on low dosage hormone replacement?  Has anyone else had this situation?  I would love to have everything removed but the oncologist told me that he would like me to keep my ovaries until I'm 45 for the bone and heart benefits of estrogen.  Well, as long as I produce estrogen, regardless if I have a uterus, my endo will still grow if we don't remove it all - so I'm lost as to what to do. 

As always - your input/experience and/or recommendations are most appreciated!  Thank you and God bless you BC Sisters!!

Kim

Deirdre1

Hi Kim.. I can only answer from my own slightly different experience on this on.. Recently, because I am starting to have some menop. symptoms I asked my PCP if I could go on a natural estrogen cream in hopes to keep the symptoms at bay - now I am 3 years out from my DCIS dx and so pretty safe (according to stats).  My PCP spoke with my oncologist and they decided that it was not a good solution for me.. so with a very small risk of recurrence they (medical society) still feel like the least amount of estrogen (even natural) should be avoided (I was ER+).   I would think that birth control pills won't be recommended, but I wouldn't go forward with the hysterectomy as my solution either!  After the experiences I've had within medicine there is a tendency to say "take it out" long before there is a need.  Perhaps if you found an alternative doc you might get some support for a different approach?  Anyway, good luck and let us know what your doc's decide (as well as your own decision)  Best!  Deirdre

Leah_S

It might be a good idea to speak to a gyn about this, since they'll be more aware of options for endometriosis. Then, take that info for another consult with onc. This way you have various views to help make your decision.

Best of luck.

Leah

lsugirl

Thanks ladies for your responses - I appreciate it.  Leah - I did meet with my gyno last week for my annual check up and this is why I'm trying to get some "personal experience" info/advice from you ladies as I like to know as much as I can before any decisions are made.  My gyno, is a reproductive endocrinologist so I've been seeing him for years and have had 2 failed IVF treatments and IUI's as well.  As devestating as it was that I did not get pregnant in Oct. 2008, if I had then my doctor said my cancer would have spread like wildfire and it would have been years before we would have found it due to the estrogen levels and not getting mammos while you're preggers and nursing so God had a plan and I have to believe in that. 

I tested my FSH levels the other day and they are high for fertility treatments so here I am on my next steps/options.  I don't want to have periods anymore b/c they are painful, heavy and if I'm not going to get pregnant than what's the point right?  So to elevate the cramps/pain, etc. I'm open to whatever I can do but not cause any worries of the cancer coming back.  If the oncologist told me he had no issue with me getting pregnant NATURALLY with all of the estrogen involved there, why can't I take the pill or other estrogen type meds?  Is it b/c they would not be a natural source like my own body??  See my confusion/dilemma? 

Anyway-  I have a check-up with my breast surgeon in a few weeks so I'll be talking with her as she gives great advice and is brutally honest.  In the meantime I hope to hear from others on this as to what they have experienced or decisions they made.  Thank you!

CrunchyPoodleMama

Hi... first of all, let me say I am SO sorry to hear about the suffering you've been going through with endo and the heartbreak of infertility (unfortunately, I know all about that first-hand).

From everything I have researched over the last year, I've come to the conclusion that women (especially women with any kind of breast cancer in their history) should NEVER take birth control pills or any other hormonal birth control, nor should we ever take chemical hormone replacement. To answer your question, yes, there is a BIG BIG BIG difference between the estrogen and progesterone produced naturally by your body and synthetic ones. My infertility specialist AND breast cancer doctor both agree that I should not do IVF because of the flood of synthetic hormones you get during an IVF cycle. (Although, I'm sure just two IVF cycles probably wasn't what triggered your DCIS... but I'm glad you didn't do more than two. Actually, being on BCP's for so many years may well have led to DCIS... but, it's done now and all you can do is make the best decisions going forward.)

I know you're in a tough spot about this since you can't go on living with the endo... are those the absolute ONLY two options? Have you tried endometrial ablation yet? If not, I would do that before doing something either highly cancer-causing like going back on the pill or something irreversible like a hysterectomy... but that's just me. 

speech529

Hello lsugirl

I am sorry you are in this situation.  Mine is very similar.  I was dx with DCIS--ER+/PR+ and about the same time(coincidentally) my gynecologist recommended a hysterectomy with BSO due to uterine prolapse.  She recommended ovaries removed b/c of family hx of ovarian cancer & breast cancer...then with my dx that came about 2 weeks later...it was a no brainer for me.

I am 51 and was already in that perimenopause with hot flashes and no periods for about 6 months.  For me the decision was easy due to family hx.  

I had the hysterectomy w/removal of ovaries & tubes on June 2 with lumpectomy.  I ended up with a right MX & immediate reconstruction on June 28. 

I am very glad I had the hysterectomy/BSO.  I did not realize how much trouble my uterus was causing me until it was gone.  I don't regret it.  In regards to the ovaries, I don't regret taking them out either--my dear mom died of ovarian cancer.

In March, I went off hormone therapy when I was dx with DCIS and started really bad hot flashes--anywhere from 10-20 a day.  They tapered off for a bit.  I have not seen a difference in my hot flashes after the hysterectomy as compared to when I went off hormone therapy.  They are beginning to diminish (about 12 a day at the most). I do know what triggers them:  wine, high sugar foods, heat, and stress.  Now that I am cleared for exercise, I am hoping that it will help a bit more, too.

I had a bone density test done last week and all is good.  Will keep an eye on that.  

I don't know if this helps, but that's my story.

lsugirl

Hi ladies - thanks for your replies - I appreciate it and will have even more to help me when I talk to my breast surgeon in a few weeks.  Julia - I'll look into the ablation as my cousin had it done but I'm just worried about the stupid estrogen being produced by my ovaries.  IF I have endo outside of my uterus, anywhere in my body - as long as I produce estrogen, the endometrosis will grow - sometimes causing webs and things get attached so again, alot to discuss my breast "GODDESS".  I have a wonderful female breast surgeon who was an angel in my whirlwind of diagnosis last year so I call her a goddess!! 

Thanks so much and I will keep you all posted!! 

Kim