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Topic: hormone therapy needed if one have bilateral masectomy?

Forum: Hormonal Therapy - Before, During, and After —

This is a safe place to share your experiences of others considering or on hormonal treatment.

Posted on: Jul 8, 2009 12:28PM

mnguyen wrote:

I am wondering if I still need hormone therapy if I am to have bilateral masectomy.    I was told that hormone therapy is to prevent recurrence, but have not able to ask the oncologist this question yet.

Dx 6/2009, IDC, 1cm, Stage IB, Grade 1, ER+/PR+, HER2-
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Jul 8, 2009 12:32PM jpann39 wrote:

Yes I believe that since your er/pr+ you will take some form of anti-hormonal meds...it will depend on your menopausal state & bone health as to if you will use tamoxiphen or one of the AI's.

Best wishes

Jule

'Gain strength by the positive and don't be sapped by the negative" Dx 11/4/2006, IDC, 2cm, Stage II, Grade 1, 0/9 nodes, ER+/PR+, HER2-
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Jul 8, 2009 12:35PM arbojenn wrote:

Hormone therapy is recommended for er positive.  Even with a mastectomy, some breast and skin tissue remain.  There may be microscopic cells lurking there.  The hormone therapy prevents the estrogen receptors in the cell from working (tamoxifen) or inhibits the production of estrogen (aromatase inhibitors) so the cells do not get the estrogen they need to grow. The theory is that they will die off.  Are you going to have radiation treatments also?  The hormone therapy might mean you do not have to do that. 

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Jul 8, 2009 06:09PM HelenaJ wrote:

Even though you have had the bilat mastectomy you may still have cells lurking around your system - not just in the remaining breast tissue but throughout your body - I had a bilateral mastectomy, am premenopausal and no lymph node involvement, I also had an Oncotype score of 6 so I didn't do chemo.  Tamoxifen is the best chance for me to stop a recurrence anywhere else in my body. 

Such is life! Invasive Papillary Carcinoma, ITC's, Oncotype score 6 Dx 10/28/2008, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Jul 9, 2009 10:34AM Kleenex wrote:

arbojenn: There is no relationship between radiation - a local treatment to zap any possible remaining cells, paired with either a lumpectomy or mastectomy with close margins or axillary involvement - and hormonal treatment - a systemic treatment to block access of ER+ cancer cells to estrogen. Taking hormonals won't mean you don't have to do radiation if it's otherwise indicated. Some women can avoid radiation by having more surgery - a mastectomy vs a lumpectomy - but even then, in some cases, the tumor is located in such a way that margins are not going to be great and radiation may be warranted even with a mastectomy. And having radiation has no bearing on whether or not you should take Tamoxifen or an AI.

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Jul 9, 2009 01:06PM mnguyen wrote:

Thank you all for sharing your knowledge and experience.  I am considering bilateral mastectomy hoping to avoid radiation and hormone therapy altogether, based on the consultation with the breast surgeon words "Hormone therapy is to help stopping recurrence/spreading to the other breasts."  Now I am so confused and scared.  Who determines whether I will need radiation or not?  The surgeon or the radiologist?  I read other thread regarding hormone therapy side effects and also worry since I already have large polyp from yearly cervical exam.

Dx 6/2009, IDC, 1cm, Stage IB, Grade 1, ER+/PR+, HER2-
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Jul 9, 2009 01:55PM - edited Jul 9, 2009 02:02PM by susanb2

The oncologist is the one to decide if and what type of hormone therapy is indicated. Since you are ER+ it will likely be recommended. The hormone therapy is to decrease the percentage chance that the breast cancer will spread to another area of your body. The most common areas for breast to metastasis are the lung, liver, brain, bone. So even with a bilateral mastectomy it can reoccur in another area of your body. Your oncologist can put all your breast cancer info, type, grade, stage etc into a computer program and give you the percentage that different treatments will decrease your chance of a reoccurance.  Have a consult with the onc prior to surgery often they wait until after surgery to have the complete pathology report.  I insisted on seeing my onc first and she set my mind at ease about a lot of things and gave me all the options. I had a bilateral mastectomy and glad I did. I had cancer in the other breast that was to early to show on mammagram or MRI. I'm on Arimidex now with a few hot flashes and some difficulty sleeping, but it's not bad and I anticipate side effects may decrease as I am on the med longer.  Good Luck to you and it's good you are researching your options prior to surgery.

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Jul 13, 2009 08:13PM analu wrote:

I am having bilateral mastectomy in September, in my last visit I asked my surgen if I could stop taking Arimedex, since it was one of the reason I decided to have the bilateral mastectomy. He say any time. I had twice cancer in one breast and two years ago again in my left, I am cancer free since then but Arimedex is working on me, have pain in my joins, mood changes, depresion. It was my decision to have the bilateral mastectomy. But now, READING ABOVE, one of the reasons is not valid. I already stop Arimedex, should I start again, what should I DO.

thanks

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Jul 15, 2009 12:42PM susanb2 wrote:

analu,

I suggest that you talk to your onc about the Arimidex. In my experience, surgeons are not near as knowledgable about the meds and all aspects of BC as you might expect. They are trained to cut and not manage all the details. The onc should be able to give you all the risks, benefits, percentages of benefits, etc for your type of cancer.  If the Arimidex has too many side effects, you may be able to try one of the other AI.

Good Luck. Susan

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Jul 17, 2009 01:07PM - edited Jul 17, 2009 01:09PM by Mouser

Talk to your oncologist. Find out your personal risk of recurrence (these are odds, but it's better if they are based on your particular data). Find out how much hormonetherapy would decrease that risk. Then -- it is your decision.

Your diagnosis is similar to mine (not identical: my IDC was around 0.5 cm, there was a separate focus of DCIS, and i'm PR-)  But for what it's worth: my onc put my long-term risk (20 yr?) of recurrence, all kinds, at 17%, with 5 yrs of AI taking it down to 9%. He also made it very clear that the risk of recurrence within the breast, or of a new cancer in the other breast, is not the real worry -- those can be treated. The risk is that there are bc cells loose in your body that might decide to become metastases. An oncotype score will give you some idea how likely that is -- but it assumes you take tamoxifen, and is usually used to decide about chemo. And all the data are odds. There is no way of telling who will be OK and who won't. They keep trying to find markers, but haven't succeeded yet.

So in the end, it is your decision. Which is scary .... 

mouser - IDC 0.4 cm + DCIS 1 cm, 2007; Stage 1, grade 2, ER+PR-, Her-; lumpectomy, rads, letrozole. More calcs 2008; mastectomy. Quit letrozole 10/09.
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Jul 17, 2009 02:59PM Kleenex wrote:

That is the key right there: it's not about lumps in breasts. It's about spread to other areas of the body.

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Jul 19, 2009 09:48PM tabby wrote:

Sounds like you are confused and with good reason.  YOu feel like you are being radical enough removing both breasts, I'm assuming.  At least that's how I felt.  Now I STILL have decisions to make.  I do not have to have chemo as it only makes like a one percent difference.  I removed about 92 percent of my chance of recurrence is what my oncologist told me, but he still wanted to put me on the tamoxifin.  I told him I had read about that and would like to avoid it.  He said I could remove ovaries (or take the Lupron shots to stop it from working--kind of try it before you buy it thing).  Of course, ovaries aren't the only things that create hormones.  I am trying to find an option where it doesn't make me CRAZY.  The ob/gyn I saw about removing ovaries said that 8 out of 10 of her patients are on a strong antidepressant (GREAT), one had to be put back on some type of estrogen--just couldn't take the side effects, and one says chuck it, she'll just deal with the side effects.  I'm assuming the Lupron to be the same.  I am interested in the iv meds that lowers the chance of recurrence and also boosts your bones.  I can see why you are confused.  I've had my masectomies and I'm confused.  What do you do when there are no good options?  Is it worth it to do anything when there's just the 8 percent chance of recurrence?  How far is too far when you are weighing quality of life issues as well?  I don't know what I'll do and I have to see the oncologist this week--go figure!

Dx 3/4/2009, ILC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Jul 19, 2009 10:20PM hrf wrote:

mnguyen, I am working with a team of 3 doctors - a surgical oncologist, a medical oncologist and a radiation oncologist. It was the radiation oncologist who decided that I needed radiation even though I had BM and clean margins. I had 4 out of 6 lymph nodes involved and she said that the current practice is to do rads even with BM.
BRCA2+ first dx in Oct. 2004 2nd dx Feb. 2009 a new primary
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Jul 19, 2009 10:32PM SandyinSoCal wrote:

I had bilateral mastectomy with no nodes positive, so I had no chemo or rads.  I was started on Tamoxifen at three months post-op and have been on it for nearly two years except for stopping for a week when I had each of my reconstructive surgeries.  I had a full hysterectomy last November.  My breast surgeon says that studies in Europe show that women such as myself who quit Tamoxifen in my situation have the same outcome as those who continue on it.  My oncologist is adamant that I remain on it, stating that there is still enough estrogen in my body to feed cancer cells.   His plan was to switch me to Arimidex for three years last month, but I talked to him about my scoliosis and fear of bone loss to an already compromised spine, so he agreed to allow me to stay on Tamoxifen for now.  He said that the studies showing a small improvement in survival with switching the drugs after two years did not take into account that some women are poor metabolizers of Tamoxifen and the real outcome might actually be the same with both approaches.  I am metabolizing it very well so he feels comfortable allowing me to stay on it.

I am wonderfully made to do ExtraOrdinary things! (www.girleo.com) Dx 5/22/2007, IDC, <1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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Jul 21, 2009 12:32PM mnguyen wrote:

Thank you all for sharing your knowledge and experience.  I spoke with the medical oncologist and she said she will be recommending me to take Tamoxifen irregard to whether I choose lumpectomy on right breast, mastectomy on right breast or bi-lateral mastectomy.  The reason has to to with the cancer being IDC.  I find this is quite radical since my tumor is stage 1, grade 1.  I am going to seek for second opinion since I read the John Hopkins web site and found all kind of side effects with tamoxifen.  I would like to add the reason for my concern with taking tamoxifen is that I currently have cervical polyp and fibroid in the uterus which will be worsen with tamoxifen.

Dx 6/2009, IDC, 1cm, Stage IB, Grade 1, ER+/PR+, HER2-
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Jul 21, 2009 07:15PM dash wrote:

Bilateral gal here--on tamoxifen. Yes, even if you have a bilateral, there's still risk. They scrape as much tissue as possible but can not remove every bit and also if there's a rogue cancer cell floating around your body, you certainly don't want estrogen binding to it, encouraging it to grow.

Lots of people talk to animals...Not very many listen, though...That's the problem. ~The Tao of Pooh
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Sep 16, 2012 06:18PM 11lynn wrote:

well what did you decide? It would be nice to know with hindsite now.  I am 1 year with bilateral breast cancer stage 1b.  Almost 1 year offmy replacement hormones and on estrogen blocker. Not awful side effects, so can fake it pretty well still, - but you know?

Dx 5/20/2011, ILC, 1cm, Stage IB, Grade 1, ER+/PR+, HER2-
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Sep 16, 2012 06:22PM 11lynn wrote:

Did your side effects increase or decrease with longer time on arimidex?  I have been on a year now and can still fake it pretty well at work, but am concerned about long and short term.  How much difference does it really make for the sacrifice in my quality of life?  It would help alot to know your experience.

Dx 5/20/2011, ILC, 1cm, Stage IB, Grade 1, ER+/PR+, HER2-
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Sep 16, 2012 11:10PM Blessings2011 wrote:

I was offered a lumpectomy with radiation, or a unilateral mastectomy. For many reasons, I decided to have a bilateral mastectomy with immediate reconstruction.

I knew that I was having the maximum surgery for the minimum sized cancer. And I also knew that this was no guarantee about chemo or radiation.

If there was any cancer found in the lymph nodes, then I would need chemo.

If any of the margins of the tumors were near the chest wall, then I would need radiation.

Only the final pathology report would be able to give the results needed to make those determinations.

Fortunately, the nodes were clear, as well as the margins. I did not need chemo or radiation.

However, my estrogen receptor status was 100% ER+, so yes - I am now on five years of Anastrozole (generic Arimidex).

If any cancer cells were NOT removed during my surgery, then the drug (aromatase inhibitor, or AI) will prevent the formation of estrogen in my body that would cause the cancer cells to grow.

I am taking this drug even though after BMX, my risk of recurrence was 1% to 2%. I lost a considerable amount of weight and started exercising, so that dropped my risk of recurrence to 0.77%.  Taking the Anastrozole will further reduce my risk by 50%, dropping it down to 0.38%. My MO would be happier if she could make it ZERO percent, but she says this is close.

Dx 9/15/2011, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 12/4/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/21/2012 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant Hormonal Therapy 9/4/2012 Arimidex (anastrozole) Hormonal Therapy 10/21/2013 Femara (letrozole) Dx 7/15/2021, IDC: Papillary, Left, <1cm, Stage IA, ER+/PR+, HER2-
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Dec 3, 2012 09:14AM - edited Dec 3, 2012 09:19AM by ritza

Have had partial masectomy/with radiation 6/2011, reduction following year on opposite breast,found more cancer,masectomy recomended. I was told no need for Tamoxafin after a bilateral masectomy???

Dx 6/6/2011, DCIS, 1cm, Stage I, Grade 1, 0/0 nodes, ER+/PR+, HER2+ Dx 5/29/2012, DCIS, 1cm, Stage I, Grade 1, ER+/PR+, HER2+
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Dec 3, 2012 09:58PM ruthbru wrote:

hormonal treatment has nothing to do with the type of surgery you've had. It is a systematic treatment, shutting down the estrogen that feeds estrogen driven cancer cells.

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Dec 3, 2012 10:41PM Lorikay wrote:

I was on estrogen patches for 15 years prior to bc. I had early menopause, then a full hysterectomy. I was told I needed the hurt after surgery for 5 years. The first two meds I didn't tolerate at all. Then they wanted to try Tamoxifen. The words of weight gain as being one of the major side effects made my decision. NO HRT for me. It is likely I got cancer from the estrogen, because my body didn't make enough. So it made no sense to take the meds. I gained about 25 lbs thru this whole ordeal. I decided I don't want to die due to being overweight. Its all in Gods hands. I am at peace with decision.

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