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Topic: 9 cm DCIS - Mastectomy / Second Opinion?? / Tamoxifen

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Apr 10, 2020 03:46PM

KARW41 wrote:

The surgeon left a voice mail that I have more DCIS (9 cm) based on the lumpectomy and it sounds as if she did not think she got it all. She said in the voice mail that she recommends mastectomy and Tamoxifen. I have to move and to start a job in two weeks, and there is just me out here. I don't have the ability to take off 6 weeks. My mother (79) had breast cancer three times, all at advanced stages, and just today went to the ER for pancreatic cancer after falling down in her home across the country from me, with my sister (single mother) trying her best to help her with my Dad who is 81. My mother took Tamoxifen and it caused her bad side effects and she STILL got cancer two more times. I'm not inclined to take it. Would I get a second opinion on the mastectomy, or what would I do? I personally would be inclined to do it, but I literally am not able to do it and not be homeless at the moment. I don't have six weeks to take off. They did not find invasive cancer. I don't think I can accumulate 6 weeks of sick leave for maybe a year of work.

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Apr 10, 2020 04:05PM Ingerp wrote:

I think all I can suggest is maybe explain your reasons for not wanting the mastectomy and see if you can get a re-excision. *Lots* of women with DCIS need a second surgery to clean up margins. I did in 2016. As you know, it's an easy surgery with a very quick recovery. Re: the Tamoxifen--it can be an important part of helping to prevent a recurrence. There's lots of support on this site. You should not assume you'll have bad SEs and definitely give it a shot if you're highly ER+.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/18/2018 Taxol (paclitaxel) Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Apr 10, 2020 04:13PM KARW41 wrote:

Thank you very much. That helps a lot to know. I appreciate very much that you shared this, that re-excision might be something out there I could ask about. I will research Tamoxifen then. My mother took it and it somehow messed up her uterus, caused heavy bleeding, and she had a very painful and debilitating surgery from it. It seems to me, personally, the risk of Tamoxifen is not worth the benefit, but I could be wrong. My own mother (before she went to the ER today) had advised not making a medical decision based on what happened to her, alone. I think it does not necessarily improve "survival??" Thank you very much for answering today. It helps. It is ER/PR positive.

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Apr 10, 2020 04:49PM Beesie wrote:

Here's a different perspective, based on my experience.

I originally had an excisional biopsy (after a stereotactic biopsy finding of ADH) which removed two large areas of high grade DCIS along with a microinvasion of IDC. There were no clear margins anywhere around either area of DCIS. My preference was to have a re-excision rather than a MX but an MRI done after the excisional biopsy showed that my breast was full of DCIS. So it was clear to me that a re-excision would be unsuccessful and I reluctantly agreed to the MX. I had a UMX with expander-to-implant reconstruction. In the end I had over 7cm of DCIS spread over those two areas in my breast.

I didn't drive for a couple of weeks after my surgery but I was outside walking to the grocery store less than 48 hours after surgery. I might have been extremely lucky, but I think for most women a MX does not mean that they are laid up for 6 weeks but rather that they have to be careful with their arm movement (no heavy lifting, no pulling or pushing or stretching too much) for 6 weeks. I remember reading that when skin is cut, it takes 6 weeks to regain 90% of the strength/resilience of the skin. So the reason for the six week rule is to ensure that the external and internal stitches and incisions aren't damaged. But I think most of us who've had a MX find that there is a lot we can do within a couple of weeks.

If your final diagnosis is DCIS (or DCIS-Mi, like mine), you will not need Tamoxifen after a MX, unless your surgical margins are too close. This recommendation comes from the MO, not the surgeon. With such a low recurrence risk after a MX (1%-2%, unless margins are close) the benefit from Tamoxifen is small. The only reason to take it is to address the breast cancer risk of the other breast. Having been diagnosed one time, you are now higher risk to be diagnosed again. But this is a lifetime risk and like anyone who is high risk, you can opt to take hormone therapy or you can choose not to. And you can make this decision at any time - there is no urgency. My MO actually recommended against Tamox. after my UMX.

Have you had an MRI? If not, I would recommend it. It will help you and the surgeon know how widespread the DCIS appears to be, and whether a re-excision might be successful or is likely doomed to fail

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Apr 10, 2020 05:07PM KARW41 wrote:

Thank you so much, Beesie. I am going to study what you have said here. I had an MRI and what is really weird is, it showed absolutely nothing suspicious. I had to pay for this MRI myself because the VA was taking months to diagnose me through community referrals. Your words really help me today. I have to move for work (finally got health insurance again), but I will get set up with a breast surgeon once there, and will see what to do then. I don't know if it is too long to wait if it takes me a year to accumulate leave in the new job, or not. If it were up to me, I would get a bilateral MX (learning the abbreviations here) because of watching my mother suffer so much from age 52 to now at age 79. Your words are truly helpful today. Thank you.

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Apr 10, 2020 05:11PM KARW41 wrote:

Oh, and also, I had done a genealogy test and then paid a little more to plug my DNA into another company's search data base. It says Tamoxifen is less efficacious in people with my genes:






Evidence level: Level 2B

AC The AC genotype in women with breast cancer who are treated with tamoxifen (with or without

anastrozole, cyclophosphamide, docetaxel, doxorubicin, epirubicin, exemestane, fluorouracil,

letrozole, paclitaxel, radiotherapy) may have DECREASED treatment EFFICACY in PREMENOPAUSAL women and INCREASED treatment EFFICACY in POST-MENOPAUSAL women as

compared to patients with the AA genotypes.

Other genetic and clinical factors may also influence

response to tamoxifen and other treatment regimens in pre- and post-menopausal women with

breast cancer.

Genes analyzed: CYP19A1 Area: Breast Neoplasms, Menopause

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Apr 11, 2020 10:39AM KARW41 wrote:

To finish this out, the surgeon insisted on recommending a mastectomy but she said I don’t have to do it immediately. I will do that hopefully not too far off, and will get a bilateral one due to the suffering my mother went through. Starting new job, moving 6 hours south in two weeks, and will accumulate leave and sick time to get it done. Trying for UCLA, Revlon Breast Center, as long as I can remain in the same job and stay out here. I’m all by myself out here, but I don’t mind it so long as I am able to care for myself and my pets okay. I’m consulting an oncologist on what my genealogy DNA augmented test said about Tamoxifen metabolism and efficacy, note above. So just to say thank you and close this out. Oh- and she did not recommend re-excision since I think DCIS was so big and extensive and my mother having breast cancer three times and now she’s got terminal pancreatic cancer. She said insurance should cover bilateral mastectomy for me.

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