is anyone DCIS ER- PR+ and taking tamoxifen?

maisy

Hi,

I was diagnosed with DCIS  grade 3 and had a total masectomy on my left breast in July.  Luckily I do not need chemo or radiation but the oncologists have recommended taking tamoxifen for preventative measures.  Most of what I read says it's for people who are ER+ and when I asked about that (I am only PR+ and slightly HER2 positive), I was told that it doesn't mean the next cancer won't be hormonal.  But with all of the side effects (especially increased risk of uterine cancer, blood clots, glaucoma....), I am tormented about whether I should go ahead and take it or not and am not sure the benefits outweigh the risks.  I've read so many different things I'm so confused and stressed and scared.  Can anyone share how you decided (what was the deciding factor) and for those who are on tamoxifen, can you share how it's going and how long you've been taking it.

cdahlstrom

I am also curious about those taking Tamoxifen as I was just given my prescription yesterday.  I'm really wondering if the risk of blood clots is worth taking this drug.

Janet456

I didn't have a choice to make as they don't test er/pr on pure DCIS in the UK.  Hence no tamoxifen for me.

Good luck with your decision making x 

Alicethecat

Hi Maisy

Like you, I'm ER- and PR positive and had grade 3 DCIS. These stats also replicated themselves with IDC - please see my signature.

Was not sure I wanted any hormone treatment but my oncologist said it was rare for all of a tumour to be completely hormone negative so I guess I will go with the flow. If it stops it coming back, so be it!

I was worried about the risk of clots and endometrial cancer with Tamoxifen, so my oncologist is going to put me on Arimidex from the start, particularly as I am post-menopausal.

No doubt I will worry about bone ache from Arimidex too but this strikes me as less scary. Who knows?

Good luck with your research and questions for your once.

Alice

mnkid

I'm supposed to see the Medical Oncologist tomorrow about starting a Tamoxifen-type drug.  I cannot take Tamoxifen because I'm on medication that would cancel out its efficacy.  I think it would be something like Evista. 

I just completed radiation, YAY! I really want to be done with this stuff.  Plus I don't care for this particular oncologist.  He told me I never had cancer.  So why do I need medication to keep something I never had from coming back?  I'm very tempted to cancel the appointment. 

I also worry about the side-effects.  Strokes run in my family, I'm already overweight and depressed and a friend of mine had horrible bone aches on the stuff.  I think I want to be done, done, done.

akinto

I just started on tamoxifen today.

My surgeon doesn't send DCIS excisions for hormonal receptor status tests, as he thinks that the risks of DCIS recurrence are too low to warrant the tamoxifen risks. I think this is standard treatment in Ontario.

 I had a hissy fit, got tested, and discovered I was ER+/PR+. I had grade 3, comedonecrosis, lots of garbage in my breasts. I am way overweight and had a mild menopause, both of which likely mean I am an estrogen factory.

 I chose to start on Tamoxifen.

 If I get any bad side effects, I will stop taking it.

 I figure it's not a permanent commitment: it's a trial.

Hils

Hi Maisy not sure if this helps at all, but I had two lumps of 6cm DCIS grade 2 with comedo necrosis (first lump found in a partial mx) second lump found in my UMX a few months later. Also had a tiny lump of IDC grade 1, all in the same breast. Had no chemo or rad therapy. Was ER+ and PR+ 90+% and was not offered any form of hormonal therapy. I am pre menopausal. Hoping that this is the right decision

I think at times it is not a precise science and we can all be offered different things by different clinicians.

Leama

Oh dear - I'm in the same boat. I found out this week I do not need radiation and I don't need chemo either.  I knew that from a few weeks ago when the MO mentioned I should consider Tamoxifen.  I'm going to need to speak with her again, but I'm not leaning towards it at all.  I'm 36 and had a unilateral mascetomy.  Sigh. I was barely a Stage 1.  BCRA test was negagtive.   I guess we'll see.  Good luck Maisy! 

maisy

Thanks to everyone who commented and shared. It took me about a month before I finally decided. In the end it all comes down with what you can live with and make peace with it. I am only 41 and not looking forward to the sneak peek at menopause nor any of the other possible & more scary effects of Tamoxifen. But I decided to try it - reducing my risk of another cancer in my other breast seemed worth it even if it's for 10 to 15 years ( I really hope to never have to go through this again!) And if the side effects are too bad then I'll stop it.

Good luck on the Arimidex, Alice!

Good luck with the Evista, mnkid!

Thanks for sharing your experience janet456, Hils and Akinto. It's amazing how different procedure/protocols are in different provinces & countries! Good luck with the tamoxifen Akinto! Would be great to know how you're doing on it. So far I've got hot flashes, nausea, and am really tired.

Leama - yes, definitely talk to your oncologist and get all the answers you need, then decide. Good luck!