STOPING TAMOXIFEN / Vaginal bleeding

Gdubs23

I'm not sure what I should do, and can some input if anyone had been in this situation.

I was diagnosed with DCIS 0 and had a bilateral mastectomy in November 2018 and have been cancer free since. My oncologist then put me on Tamoxifen for 5-10 years. I've been in it for 1.5 years now. My insurance was no longer accepted by this oncologist and I have been switched to a new one. The day I met her she was confused as to why i was on this medication. She said because I had a double mastectomy there was no reason because the chances of recurrence is minimal and recommended that I Stop taking it.
But she left the decision up to me.

I had my old oncologist tell me I need to be on the medication and now my new one is telling me that its not needed. Whats the standard thing with those who have had double mastectomy? I have two friends around my age who both had double mastectomies and were put on tamoxifen. ( 1 had DCIS 0, and the other had DCIS 2)
but I never heard it was not needed.

After that visit, I started to have irregular vaginal bleeding. (1.5 years after tamoxifen started) I would have my period, and bleed again within that same month soaking though tampons every 2 hours. It usually started again during sex.
Because of this,My PCP and my Oncologist both recommended me to stop taking tamoxifen right away (2 days ago) and wait to see what the gynecologist specialist says (appt june 1st) due to concern of endometrial cancer.

My main question is.

Whats the standard thing with those who have had double mastectomy?
If everything turns out normal with my gynecologist, do I continue taking the medication or not?
its confusing when you had one tell you to take it, and another tell you not to. Who do I listen to? Who is right here?
I need a 3rd opinion.

gb2115

I wonder if it's because you had DCIS? If it were IDC you would definitely need the meds even with a double mastectomy. I don't know though.

bluesky01

Hello

I am taking Tamoxifen since Feb 2017. It is almost 2 and a half years. I had a hard time to get used to this med. After 6 months it was getting better. Then I had some bleeding spotting after about 1 year after taking Tamoxifen. I was negative for Uterus cancer. Last month, I was bleeding like a normal period. I am 57 close to 58. (Menapos 3 years ago)

I took Endovaginal ultrasound, and found the endometrial stripe thickenss is 7 mm. Normal should be 4 mm.

I had a Hysteroscopy and D/C 2 weeks ago, today this afternoon I will go to see my gyn doc for post check up. I believe that he would suggest hysterectomy including ovary removal. When I start med (Tamx) I was horrified to know that with all the sideeffects. One of the scary thing was it will cause another cancer like Endometrial cancer. All the doctor said the risk is very low though. Well, I have to deal with this now...

I wish I had Mastactomy and no Rad no med. I was DCIS stage 0 but had to 2 time lumpectomy due to positive margin and med.

I don't understand why double mastactomy with DCIS have to go Tamoxifen. What is the benefit? If anyone know, please post.

Gdubs23

Im sorry youre having to go through that. I did okay at the beginning. Vaginal dryness was the biggest side effect, and that was horrible. It felt like tiny paper cuts throughout it all

I went to the ER because of how much I was bleeding when it wasnt my period. They did a internal ultra sound but said the lining thickness was normal. but i still need to see the specialist. Thats why im frustrated and dont know. Do i stick with a medication that can cause another cancer? Or do i stop the medication that can cause a recurrence? The recurrence scares me. Im almost done with my reconstruction, so I fear if something were to happen, it would be harder to find.

Thats what my 2nd oncologist didnt understand either. She said DCIS patients shouldnt have to be on the medication if theyve had double mastectomies because there are no real benefits sinve youve removed all the tissue. I think my 1st oncologist put me on it in case there were left over cells/tissue since they cant be certain to get it all.

I hope everything goes well for you today.

BCat40

After a DMX, the point of being on Tamoxifen would be for undetected escaped cancer cells circulating around your body--to prevent them from taking hold somewhere are coming back as stage IV cancer. if you had DCIS, which is non-invasive, the risk of escaped cells is extremely low (only if there were a DCIS microinvasion undetected by the pathology lab).

MsPrecious

Gdubs23,

Sorry you had to go through this. You were placed on Tamoxifen because the tumor was ER+ and PR+. It has nothing to do with having mastectomy or not. Having mastectomy or lumpectomy does not guarantee 100% protection from recurrence. Tamoxifen is to block estrogen receptors in the breast but it also activate estrogen receptors in the uterus and that is why postmenopausal women tend to bleed because it's like waking up the uterine estrogen that had gone to sleep when menopause took place. For premenopausal, there is still estrogen and bleeding comes even though may not be regular during tamoxifen, so the slight additional bleeding in premenopausals taking the drug may go unnoticed.

I hope this answers your question. Hope you feel better soon. If you are in doubt, please seek a 2nd and 3rd opinion.

Gdubs23

Sooooo, I now have the reasoning WHY i was placed on it, thanks to you lovely ladies, But now im being told I dont need it.

Do I side with my first doctor and continue it, or go with my new doctor and get off it? Thats where I'm at a loss