tamoxifen even though BMX?

VT_whitley · August 2015

In April I had a double mastectomy for bilateral DCIS, grade 3 with comedo necrosis in one breast. I had one close surgical margin (thankfully on the anterior, or whatever is opposite the chest wall), and that made my breast surgeon and Ob/Gyn nervous. At one point we considered radiation, but chose not to after consults with oncologists at Duke and with Dr. Lagios. All of these outside doctors also agreed I did not need tamoxifen. But it's clear that my doctors here (namely my breast surgeon and my gyn) are nervous about me. They won't say it, but I get the feeling that they think that if anyone who had BMX for DCIS is going to recur, it's going to be me. I'm 40 and am BRCA negative but have some family history. That combined with the high grade and close margin worries them way more than it worried the experts I consulted with. In fact, when I had my exchange surgery in July, the breast surgeon went back in and scrapped the side where the close margin was. All tissue was clean. But anyway, I still feel like they want me to take tamoxifen. And I have almost decided I will. My mother recurred 10 years after what was most likely a stage 1 cancer (for which she received nothing but mastectomy--no adjuvant therapy at all--in 1974). So it's hard to get that out of the back of my mind--the fact that since my DCIS was er+, I have this chance to really reduce recurrence chance, but at the cost of side effects that can lower my quality of life. It is SUCH a gray area to be in.

Anyone out there who had BMX for DCIS opt for tamoxifen as well?

thanks,

KP

CAMommy · August 2015

if I had a bmx, I would not take tamoxifen. You risk of recurrence is so small that the side effects of tamoxifen are greater than your risk reduction from it.

Stacy7 · August 2015

how was your moms recurrence? Local, treatable? It would be interesting to know since she didnt take tamo

VT_whitley · August 2015

My mom's recurrence was in distant--in her bones 10 years after the initial Dx. Of course this new study out has me leaning even harder toward tamoxifen. I'm 40 (so youngish) and my DCIS was grade 3. It was ER+.

Thanks for responses,

KP

alizbeth · August 2015

Hi, KP,

My history is very similar to yours. I was diagnosed in 2014 at the age of 42 and had a BMX in June 2014. I had multi-focal DCIS, Grade 3 with comedo necrosis. Prior to my mastectomy, they had identified only one area with DCIS, but final pathology showed two additional areas, including an area with close to positive margins in an area near the chest wall.

My oncologist decided to present my case to the tumor board at the NCI hospital where I was being treated. I believe my oncologist thought radiation may be recommended. However, my breast surgeon and reconstructive surgeon both argued it was not necessary because they were very thorough. In any event, I believe the compromise reached by the tumor board was to take tamoxifen on account of the close to positive margin.

Fast forward to last month....I had an appointment with a new oncologist b/c my former one transferred to a different clinic. The new oncologist remembered discussions of my case at the tumor board. She flat out told me my risks were so low that as far as she was concerned, I could stop taking tamoxifen.

I actually have very few side effects on tamoxifen. I have night sweats and hot flashes, but only at night. They can be bad sometimes. But, I have also had periods of many months where I don't have them at all. So, you could try it and see what the side effects are like. Because I wasn't having bad side effects, I am still taking the tamoxifen, though I may decide to stop taking it if the hot flashes worsen.

All the best,

Amy

VT_whitley · August 2015

Thanks for the response, Amy. Yes, we have similar situations. I am calling the MO today to schedule an appointment to talk it over one more time and most likely get the prescription for tamoxifen. I talked to the BS again yesterday and she reiterated her opinion that it was a good idea. I am happy for you that your SEs haven't been so bad. Will cross my fingers for the same, knowing that if they are unbearable, I can choose to discontinue.

Good luck to you,

Kelly

Ringelle · August 2015

Just came from my post op appointment for my bmx. Margins were negative and nodes were clear. Nothing more than pure DCIS was found. Surgeon took case to the Tumor Board. Radiation has not been recommended but they did recommend that I follow up with my MO for her opinion on taking Tamoxifen. He did mention that he will be following up on that discussion with the "team" because this recommendation is different than what they've been telling him for the past 5 years. He seems to think the thinking about tamoxifen after bmx has changed. I see the MO on Thursday and I'm interested to hear her take on this.

VT_whitley · August 2015

Hi, Ringelle,

I hope you'll come back and report what you find out. I am talking to my MO Friday and will post his response. Congrats on clean margins and nodes. I see that your DCIS was also HER2+. Did they automatically check for that? I don't know the HER2 status of my DCIS; my BS said they don't normally test that since they will not give herceptin to DCIS patients.

I was just in Cheasapeake this past weekend for a soccer tournament. I'm from Blacksburg.

Best of luck,

Kelly

Ringelle · August 2015

VT_whitley - my original biopsy came back basically undecided. My first LX pathology had it listed as positive but said it should be reviewed again if clinically suggested. There hasn't been much talk about it.

Why is it comforting in a weird way to know when people in the same "boat" are in the same area. Next time you're here - shoot me a message

I will definitely report back on what the MO says.

Ringelle · August 2015

The MO quickly dismissed Tamoxifen and any discussion about taking it. She had no idea why my BS and the tumor board would suggest me following up with her about it. I really don't want to take Tamoxifen but now I'm confused as to why the tumor board would suggest me talking to an oncologist and how she so quickly dismissed it. I sent an email to my BS making an inquiry if I should seek another opinion or perhaps he could follow up with his associates to get some more information behind their recommendation. I've learned one thing about DCIS - nothing is straight forward or easy!

BS responded to my email and said he 100% agreed with the MO and has never recommended Tamoxifen to a bmx patient. Apparently at tumor board another surgeon suggested that I still had a "chance" of recurrence albeit low and a medical oncologist stated that it at least deserved a discussion between me and a medical oncologist.

BS says I am done with DCIS and to follow up with him in 6 months. Hallelujah!

ksusan · August 2015

I had a BMX, and it seems to be standard to recommend tamoxifen if a node is positive.

sunshinegal · August 2015

Hi VT_Whitley,

I had a uni mx in 2010, and had a prophy mx last week on the other side. (I did not take tamox back then because we wanted to have kids.) I just spoke with my breast surgeon today at my post-op appointment about tamox after BMX.

He said it would provide virtually no benefit to me. Recurrence risk after BMX is 1-2%, and that includes both local and distant recurrence. He basically said the risk of distance recurrence was so low for me that the negative side effects of tamox would outweigh the tiny benefit I would get from it.

VT_whitley · August 2015

I just met with my MO today and while he would have never recommended tamoxifen himself, he is willing to prescribe it and let me try. I am SO confused. My Ob-Gyn, the BS, and a gyn onc (whom I met with about OV cancer prevention) all thought it would be good for me to take tamoxifen. The Duke MO from whom I got a second opinion, my own MO, and Dr. Lagois all thought I should not take it. I am totally caught in the middle. Everything is complicated by the recent Narod study, which was confusing and disconcerting. UGH.

Thanks for the response,

KP

Ringelle · August 2015

vt- those telling you to take it - what is their reasoning? Do I understand you had a bmx? Did you have negative or close margins? My bs is adamant about not recommending Tamoxifen after a bilateral with negative margins. My opinion is to figure out who's opinion you trust the most! Sometimes lots of opinions muddy the waters.

VT_whitley · August 2015

Ringelle--it was my BS who first brought it up right after BMX because I had one close margin. So I consulted with oncologist at Duke and she said no further treatment. And then, during exchange surgery, the BS went back in and re-excised the area of the skin flap near that close margin, and the tissue from that came back clear. But still, she (the BS) and my Gyn seem to think I will get some benefit from tamoxifen. I think it's because I am young-ish (40) and had high grade. And my mother, who was Dx'ed at age 32, had a recurrence 10 years later and died at age 46. I don't know their reasoning entirely. I'm giving myself a week to make a decision. Like you say, everything with DCIS is grey.

Ringelle · August 2015

That's a tough call. How are you leaning. As I was reading here were my reaction: close margin - yep I'd want to take it! Re-excision came back clear: nope - I wouldn't take it! Mom had recurrence 10 years later and passed: yep - I'd want to take it! Was your mom diagnosed with Dcis? Did she have a bmx? Did she do adju therapy? Out of all your doctors who do you trust the most? You could always start to take it and see how you tolerate it. You can always stop. How are you dealing with your fears of recurrence. That is my biggest obstacle as now that bs and mo have released me I am fearful that it's just me watching me. Trying to build my faith here. I've been more emotional since bmx than the 4 months befor

VT_whitley · August 2015

I was 1 when my mom was Dx'd. But from what I have gathered, she must have had a stage 1 cancer. It was a palpable lump--she found it. It was 1974 so she went to sleep for a biopsy and woke up with a uni Mx at age 32. There was no adjuvant therapy at all. No rads, chemo, or tamox. I believe I am going to try it and quit if it's diminishing my quality of life. I don't have to be on it, but if I can tolerate it, then it will ease my recurrence fears. I will let you know how it goes.

tamoxifen even though BMX?

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