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All TopicsForum: High Risk for Breast Cancer → Topic: Tamoxifen Vs Mastectomy

Topic: Tamoxifen Vs Mastectomy

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Feb 7, 2012 01:43PM

winter2011 wrote:


My name is Holly, I am 38 years old and was diagnosed with Atypical Ductal Hyperplasia on January 4, 2012. I just had an excisional biopsy and everything in this duct has been removed. My mother was diagnosed with Breast Cancer at 27 and passed away at 28...both of these factors making my risk of breast cancer higher. I am now trying to decide which prevention strategy I should go with....Tamoxifen or Mastectomy. Are there any individuals on this site that have been on Tamoxifen or had a mastectomy and can tell me how they felt/feel, please. I just need to gather some more information before I decide. Thank you.

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Feb 7, 2012 02:43PM shirleysangels22 wrote:

Hi Holly,

I was told I have cancer in the left breast June 24TH 2011. I had to wait a month before I could have surgery. With the help of my husband and daughter we decided to have them both removed without reconstrution. If I were to have just the tumor removed or a mastectomy of the left breast I would have to have radiation treatments. My husband didn't want me to be in anymore pain than I had to be. One surgery was enough. Besides it takes about a full year for a new set of boobs. I have heard some really bad storys about reconstructions that went bad including infections and do overs. No Thank You. I just put my fake boobs in and away we go. I just have to take Tamoxifen for 5 years. No problem. Don't get me wrong. It does take time to recover from a double mastectomy. I would say about 7 to 8 weeks. There is a tightness around the chest that feels like a rope being pulled tight. Best of luck to you.

Yor Sister in Pink, Shirley

Dx 6/24/2011, IDC, 2cm, Stage II, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Feb 7, 2012 02:51PM winter2011 wrote:


How does the Tamoxifen make you feel? I am just confused as I am not sure what path I should take. I have time to decide because I just had my excisional biopsy...but I am just at a loss...I really want to do everything in my power to prevent anything further from happening. Can you give me any insight???

 Holly :) 

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Feb 7, 2012 03:20PM CorinneM1 wrote:

Holly, I had a very different diagnosis, but I had a mastectomy and I am currently on Tamoxifen for the next 5+ years (they are stating somekind of hormone therapy for 10 years). I am 40.

Everyone's recovery is different.  I was back to work within 2 weeks, and was fine physically and mentally.  I haven't had any issues or horror stories with Tamoxifen either.

Is this what your breast surgeron is stating--either/or mastectomy or tamoxifen as a preventative? You are young. Do you have kids or do you plan on having any children?  Pregnancy and tamoxifen is a no-no.

CorinneM1 ILC Grade 1 Stage 1 ER/PR+ HER neg. BMX, no chemo, no rads, tamoxifen for 5+ years
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Feb 7, 2012 03:27PM gardengumby wrote:

Be aware of the fact that some people simply cannot take tamoxifen (I am one).  My mother tolerated it very easily, not so for me.  That said, if there was anything I could have done to not have a mastectomy, I would have - in a heartbeat.

BRCA1 & 2 negative - 3 family members. Oncotype 14. DCIS 7.5 cm, intermediate Dx 10/28/2010, IDC, 1cm, Stage IIA, Grade 2, 2/19 nodes, ER+/PR+, HER2- Surgery 12/20/2010 Mastectomy: Left; Lymph node removal: Underarm/Axillary, Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 2/15/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 11/1/2011 Femara (letrozole) Dx 10/28/2012, DCIS, 6cm+, Grade 2, ER+/PR+
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Feb 7, 2012 03:38PM peggy_j wrote:

Have you been tested for the BRCA gene? That might influence your decision.

More than other BC TX, it seems like reactions to tamoxifen vary considerably by patient. Some have a lot of problems, some none or minor SEs My docs said that some women have SEs for a 3-4 months and then they settle down. (that was the case for me). As my BS said, you can always try tamox to see how it is for you. (not a lot of do-overs with surgery). BTW, in the Hormone forum there are a lot of threads on tamox.  A couple members have pointed out that patients who aren't having SEs are less likely to post comments (or have a reason to visit) so keep that in mind (and there's at least one thread asking for feedback from people who had no SEs on tamoxifen). Good luck!

Dx 2/2011, IDC, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Feb 7, 2012 04:09PM LisaAlissa wrote:

A couple of thoughts.

Facing Our Risk of Cancer Empowered is a web site for women dealing with risks of hereditary cancer risks.  Since you're considering preventative strategies, you will probably find that website (and the forum there) useful as you consider your options.

Genetic counseling.  As peggy_j suggested, you should probably see a genetic counselor and consider being tested for the BRCA gene (as well as anything else the counselor suggests), and discuss how various strategies (Tamoxifen, PBMX, etc.) will address your risk profile.  Depending on the analysis of your family history and gene testing, you may also be at risk for other related hereditary cancers.  And you may want to address those risks as well.

Tamoxifen.  There are some people who have serious side effects from Tamoxifen, others who don't.  After you've gained an understanding of how your various risks can be addressed, if Tamoxifen if something that sounds appropriate to you and your medical team, then why not try it?  While some women have significant side effects, others don't.  You may be one of the women without significant side effects.   

Prophylactic Bilateral Mastectomy ("PBMX").  Search for one of Beesie's posts (on the DCIS board) for factors to consider as you decide whether or not a PBMX is for you.  It's not an easy decision, and as you say, you'll want to gather as much information as possible before rushing into anything.  Then it will be a decision that only you can make.  Note that for insurance to cover it, they are likely to want to make sure that you've covered all of your bases (genetic testing/risk asseesments, etc.)

This isn't the only surgery that is indicated for some women facing hereditary cancer risks.  As you gather information, you'll also hear suggestions that for some women, ovaries should also be removed.  You need to have your specific risks assessed. 

Good luck!


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Feb 7, 2012 04:12PM Mallory107 wrote:

Something to consider is that Tamox only works for so long-I think that 15 years is the max. So at some point you will be back at the same place on worrying about preventing BC.  I am 45 and had a UMX and I have to say that it was much easier than I thought it would be.  Not one thing about it has matched up to my fears going in.  Not even what my partially reconstructed breast looks like.  One thing to realize is that each of us is different and just because some people have issues with a treatment does not mean you will.  However, that being said I should take my own advice!  I have been completely scared off of taking tamox from reading the side effects and horror stories.  So much so that I am most likely going to do a PMX on the other side so as not to have to worry about it.   

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Feb 7, 2012 04:21PM msphil wrote:

hello I had a L mastectomy and chemo and rads and 5 yrs on Tamoxifen, I had(idc,stage 2, 3 nodes invovled, reconstruction body rejected it and implant removed, I had a choice of lumpectomy or total radical mastectomy I opted for mast, for it gave ME better long term survival, and I am now an 18 yr Survivor(Praise the Lord.  God Bless sweetie, you and all of us are in my prayers daily.  msphil Hugs!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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Feb 7, 2012 04:38PM awb wrote:

Holly----I am high risk due to LCIS and family history of bc (mom had ILC).  I took tamoxifen for the full 5 years with minimal SEs, mainly hot flashes.  I would recommend trying it and see how you tolerate it. Just be sure to get a yearly transvaginal US to monitor both the uterine lining and the ovaries. and I would definitely encourage you to be genectically tested, since your mom was so young when diagnosed. The results could definitely help you with future decisions on treatment options.


"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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Feb 7, 2012 04:39PM winter2011 wrote:

I did get tested for the gene mutations and that came back negative, which is good; however, the Counselor suggested that since mom was so young there could be other mutations that are not testable.

Thank you to everyone for your help. It is so nice for all of you to take the time to help me understand everything and to realize that others are going through the same thoughts and processes as I am.


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Feb 7, 2012 06:00PM peggy_j wrote:

winter2011 wrote:

I did get tested for the gene mutations and that came back negative, which is good; however, the Counselor suggested that since mom was so young there could be other mutations that are not testable.

Good point. Dang. I'm sorry you're going through this. I don't have any answers, unfortunately. I was Dx'd at 46 and thought I was much too young to be dealing with BC (as if there were a perfect age...) so I can't even imagine how you feel, being even younger and with your mother's history. But...I found a lot of great support here and at the in-person cancer support centers. (our local breast cancer center has counselors, support groups and trained researchers who can do research for you). So...hopefully some of these resources can help. Good luck on your journey.

Dx 2/2011, IDC, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Feb 7, 2012 06:08PM farmerlucy wrote:

Hi Holly - Sorry you have to go through this. My mother had BC at 27 and died at 29. I did the high risk screenings for twenty years. Last fall  I had an excisional biopsy due to nipple discharge and they found ALH and ADH. I am 51 now, so much older than you. The genetic counselor recommended tamoxifen (actually reloxifen sp?) or PBM. I am having a PBM this month. I am negative for the BRCA mutation. On the other hand a close friend of mine has a BRCA positive family member, my friend has not been tested but is choosing high risk screening. All high risk screenings are not the same. Be sure you are with a top notch full service center. I don't know the side effects of tamoxifen, but I knew it wasn't for me. I think the thought of many more biopsies, mammo call backs and added stress was too much for me. I don't want to "catch" it early. I want to prevent it. If I have to lose my breasts for that it is worth it to me.

Surgery 2/20/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/10/2012 Lymph node removal: Sentinel Surgery 7/21/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/9/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/13/2015 Prophylactic ovary removal Hormonal Therapy 4/22/2015 Femara (letrozole)