Bilateral Mx, no further treatment? Concerned!!
Hi -
I am reposting this in the DCIS forum...
I had a bilateral mastectomy without reconstruction on 1/7, after being diagnosed with dcis, grade 3, multifocal, comedo type, necrosis...in my left breast My cancer was estrogen (75%) and progesterone (40%) positive. I am 41 years old. The pathology results from the mx indiated that all of the cancer from my left breast appears to have been removed (about 2 cm), with no indication of invasion or lymph node involvement (had SLB - negative). My right breast was cancer-free, but had numerous fibrocystic changes.
I have been a high-risk patient for 10 years, and have had checkups with my breast surgeon every 6 months for about 6 years, along with 2 MRI's and several ultrasounds and yearly mammograms. This cancer was caught during my yearly mammogram. My mom was tested for BRCA, and found to be negative. She had breast cancer at age 40 (40 year survivor), her sister was diagnosed at about age 51, and died at age 60. Two of their first cousins had breast cancer in their 40's. There are also other cancers in my mom and dad's family. Maternally, my mom's brother died of lung cancer, and her father died of prostrate cancer. Another living brother has had several cases of skin cancer. On my dad's side, my grandmother died of cancer (I was told nerve cancer - this was in mid 70's). One of his sisters had lung cancer, and another had 2 different types of cancer.
My surgeon referred me to an oncologist, assuming he would prescribe tamoxifen for 5 years. I met with the oncologist (who was highly recommended by several friends, and supposedly is top notch with breast cancer).Anyway, I did not need radiation or chemo, since it was not invasive, but he recommended NOT taking tamoxifen. He felt that the side effects were more of a risk than the fact that all of my breast tissue is removed, and the chance of the cancer not returning is 98%. He did recommend that I go back to where my mom was genetically tested, and to be tested myself (as the gene could have been passed from my father, and other genetic markers have been identified since my mom was tested about 3 years ago.) Also concerned if there is a possibility of concerns for ovaries?
What are your thoughts? I am going through both guilt that I am somehow getting the easy way out when I know so many people who have suffered through radiation and/or chemo. Also, uneasy that I'm not getting that extra boost to make sure I don't have cancer! Everyone I know was given tamoxifen. I almost feel like I need something to make sure that it is all gone. I even asked him if a light round of chemo would do any good (the answer was no).
I am planning on having a bilateral DIEP done the first of April. My oncologist applauded me for acting so quickly and proactively in having the bilateral mastectomy, and not having anything done immediately for reconstruction. He said that by doing this, and avoiding the expanders, etc. gave the surgeon the best field to make sure everything was removed.
I know this is long, but I am concerned about the ER+ and PR+ status. I am premenopausal. Should I talk with someone else about having my ovaries removed? Focus on a estrogen lowering diet? I just keep worrying that I will have cancer somewhere else that will not be caught and treated so quickly. Has anyone else had just the bilateral mastectomy, with no additional treatment? Thanks!
Comments
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Hello Cimiche,
We have similar situations, so I will let you know what my experience has been and proposed follow up is going to be. I am 40 yrs old and was diagnosed in November, DCIS grade 3, comedo type with necrosis. Highly er+/pr+. I am having my bmx next week. I have seen a couple of different BS. The first said with bmx she would still recommend tamoxifen. I really liked her, but she does not work with my PS, so I had to switch. The second doc, and he is from a major cancer center, does not recommend tamox for dcis/bmx patients. He feels that the risks of side effects are high in comparison to the benefit and therefore not worth the risk. There is a 2% chance of recurrance with bmx, tamox will decrease that by up to 50%, so only a small help after bmx. I am a little uneasy about having no follow up meds either, but I am going to trust my onc. Find a doc that you can trust and then follow your instincts. If you want tamox, push for it.
I asked about ovaries also, as my ER (80%) and PR (90%) are high. My gyn told me that unless my BRCA tests came back positive, he would not take ovaries. Your ovaries help with many things, even after menopause and removing them can cause major problems. I believe he said heart and ostioporosis. But, if I was identified as carrying a BC gene, he would recommend removing them.
Regarding your family history. I just met with a genetics counselor regarding BRCA testing. They have identified a couple of family markers, but there are still unknown markers. Even if you test negative for BRCA 1/2, you may still have a hereditary link not yet identified. The counselor did tell me that melanoma, prostate, breast, ovarian, and colon appear to have a link in the hereditary cancers. Your mother's side really does look like it could carry a gene. I would definitely talk with a genetics counselor and consider being tested.
Good luck. I think DCIS is a hard diagnosis. So much is unknown and at times it seems I am overtreating it, and other times like I am not doing enough.
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If you turn out to be BRCA positive (the genetic test) you might think about removing your ovaries. Other than that, I can't think of any further treatment, other than a healthy diet & exercise, that would make sense.
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Thank you - good responses. I have my BRCA testing done on Feb 2. I have read and researched my pathology report. I find no where in it that it mentions HER-2 status. Everyone seems to know what their status is. Is it not typical to test for that?
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Both BS I talked to said that HER2 status is not relevant to DCIS diagnosis. I have seen others with DCIS diagnosis that know theirs, but neither of my docs checked mine.
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I was diagnosed with DCIS 11/6/09 (left breast ), had bilateral mastectomy 1/6/10. ER+ (90), PR+(60)....Four nodes removed on left side, all negative, one node removed on right side, negative.
I saw two oncologists prior to my BMX with the biopsy report from my lumpectomy (A.K.A. half-breast-ectomy) which showed the high-intermediate grade, multi-focal DCIS. Both oncologists gave the same recommendation....1) BMX or 2) UMX and tamoxifen.
I don't have much BC history in my family, as there are very few females to follow (no sisters, no girls cousins, g'mother killed at young age in auto accident, dad an only child, etc)...One oncologist did recommend genetic testing for me, for my children's sake.
I'm a little older than the rest of you, as I am 50, but I just turned 50 this summer, but I'm no where near menopausal.....
I am actually quite relieved to not have to take tamoxifen. I've read of so many side effects and the risks, and I just didn't want to go there....that's why I chose to go ahead and take both sides (in addition to the right side showing fibocystic changes, knowing the hormone factor, not wanting the extra worry with having young children, etc.)
So, anyway, to go back to my original point....both oncologists - and these two deal mostly with Breast cancer - said with bilateral mastectomy, I would need no further follow up. Nothing.
(Louisville, Kentucky doctors)
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If you have a positive ER/PR hormone receptor, then there isn't an HER2 status - that's what my BS told me....
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test
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neversurrender, my understanding is the same as what you said with regard to HER2 status and DCIS. There is no clear scientific understanding yet of how HER2 status impacts DCIS patients. Only a few small studies have been done; some show that HER2+ DCIS is more aggressive but others show exactly the opposite. What is known is that DCIS is HER2+ much more often that IDC, and again there is no understanding of why this is. Add to all this the fact that for those who have DCIS that is HER2+, there are no differences in treatment vs. those who are HER2-. Herceptin, which is the drug used for those with invasive cancer that is HER2+, is not approved for women with DCIS (although a clinical trial is underway). Because of this, many doctors don't test DCIS for HER2 status, or at least don't tell their patients the result.
robinlbe, HER2 status is separate from ER/PR status. Someone can be ER+/PR+ and still be HER2+.
cimiche, "no further treatment" is the normal standard of care after a bilateral mastectomy for DCIS. Some docs do recommend Tamoxifen but frankly I think that's irresponsible. Most studies have confirmed that the recurrence/new breast cancer risk after a bilateral for DCIS is only 1% - 2%. Tamoxifen can cut this risk by approx. 45%, which means that the benefit is at most <1%. The risk of serious side effects from Tamoxifen is greater than that and even without the serious side effects, approx. 60% of women who take Tamoxifen endure quality of life side effects. So for those who've had a bilateral for DCIS (or LCIS or ADH or as a preventative surgery), the risks from Tamoxifen are almost sure to outweigh the benefits. It's important to note that the situation is different for those who have invasive cancer who have a bilateral. In that case, Tamoxifen may be quite beneficial in reducing the risk of distant recurrence (i.e. mets).
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Cimiche -
It sounds like you had to focus on your "breast health" for a long time due to your risk factors - and because you were vigilant, your "cancer" was caught in the earliest possible stage and you chose to treat it aggressively - a bilateral mastectomy. You have been through alot and have had to make difficult decisions. A consequence of your bmx for dcis - with no micro-invasion and clean margins - is that tamoxifen is not necessary for you. I can understand how it feels like you are just walking away from this issue of cancer - if you don't continue to do something about it. You seem open to life style changes, perhaps you can find on the alternative/complementary forum here on bco recommended lifestyle changes/food choices/supplements etc that will help you lower your body's production of estrogen, lower your exposure to estrogen and estrogen producing substances - in food, cosmetics etc.. So there are actions you can take other than taking tamoxifen. Please stop being so hard on yourself.
Julie E
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I'm high ER+ and PR+ but wouldn't DREAM of taking Tamoxifen. My doctor asked me if I wanted to take it and I said no, that in my experience, drugs did nothing to correct my hormone imbalances, but diet and lifestyle did. He was fine with that. Diet/lifestyle modifications are SO much more powerful than a drug which causes unacceptable side effects as well as a higher risk for other kinds of cancer. I urge you to consider that your treatment plan and take it VERY seriously.
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Julia, I had a single mastectomy (by necessity, not choice) and opted to not take Tamoxifen to protect my remaining breast. That decision made sense for me, based on my risk factors, based on how I deal with risk and based on my assessment of what was important to me.
Having said that, the fact is that Tamoxifen is a very effective drug and for those who have a high risk of local or distant recurrence, or for those who have a high risk of getting a new primary BC, Tamoxifen can reduce this risk significantly. While there is a risk of serious side effects from Tamoxifen, this risk is small (<1% - 3% depending on the individual) compared to the benefit that many women get by taking this drug. My comments about Tamoxifen in my earlier post related specifically to situations where the benefit from Tamoxifen is very low - the benefit is less than 1% for those who have a bilateral for DCIS - in which case the risks do in fact outweigh the benefits. But for many women, the benefits of Tamoxifen far outweigh the risks. Tamoxifen has saved many lives.
When it comes to diet, there have been studies that have suggested that changes in diet can help reduce the risk of breast cancer, but from anything I've seen none of these results come anywhere near the benefit of Tamoxifen for those who are high risk. This isn't to say that diet changes aren't beneficial but it is misleading to say that "Diet/lifestyle modifications are SO much more powerful..." Your statement might be true for those who are low risk (where the benefit from Tamoxifen will be small) but it is certainly not true for those who are high risk. I appreciate that you may have only meant your comment in the context of cimiche's question (i.e. for someone who had a bilateral for DCIS) but women with all types of diagnoses read this forum and I worry that someone who is high risk and who really needs Tamoxifen might decide not to take it because of what you said, and that could be a very costly decision.
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My situation and dx. sounds identical to yours. and I am on here researching when I was not prescribed Tam. I feel "like" I should be doing something else.
am very confused. I thought it was all behind me and somehow I started researching again. ARG, I should stay off the internet.
I did have recon. done immediately following my double mast. I had DIEP/Tram.
What made you decide to wait for recon?
Barb
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I have a family history of breast cancer (mother age 58) and ovarian cancer (aunt age 37). I started having problems in spring 2005 with abnormal mammo requiring a biopsy of the left breast, ADH. Doctor suggested I take tamox but since I had just turned 45, I didn't want the menopause symptoms. He put me on the close watch, 6 month mammo (both breasts) and follow up with him. in Fall 2006, 2nd abnormal mammo requiring biopsy of the right breast, ADH again. Doctor said that I needed to take the tamox and consider preventative bilat. I had hot flashes/night sweats and mood swings with the tamox. Next mammo 6 months later for the third time was abnormal again on the right. This time DCIS. I opted for bilat, final path report showed additional ADH that didn't show up on mammo both breasts.
Was taken off the tamox since as Beesie stated, Most studies have confirmed that the recurrence/new breast cancer risk after a bilateral for DCIS is only 1% - 2%. Tamoxifen can cut this risk by approx. 45%, which means that the benefit is at most <1%. The risk of serious side effects from Tamoxifen is greater than that and even without the serious side effects, approx. 60% of women who take Tamoxifen endure quality of life side effects. and I was one with side effects I couldn't deal with.
Sheila
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I too have had bilateral mastectomy for DCIS with no further treatment. Tamoxifen would have been recommended if I decided to keep my one remaining healthy breast. I also have a strong family history, but the gene test came back negative. My doctor also said the same thing about not removing the ovaries unless it came back positive. They checked my HER status on my DCIS which came back positive. However, my surgeon explained that a lot of DCIS patients are positive and treatment is the same either way. This was along with an ER and PR positive diagnosis. Most times HER status is done only for research on DCIS patients and sometimes not done at all. Good luck.
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My doctor didn't not order the HER2 test because my DCIS was not invasive. I wish I knew just for my own sake, but guess it doesn't matter in the long run.
Like you, CarolMarie, if I had stayed with a unilateral mastectomy, I would have been given Tamoxifen, but since I opted for the bilateral, I have no further treatment.
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Cimiche, You have great feedback here and I agree with all.
My story is MX at age 32 (1990) IDC 2B, estrogen-, so no tamoxifen, yes for chemo. Gyn talked about ovary removal a few years ago, before I would consider that I was tested and am neg for BRCA. My brother dx prostate cancer last year, my sister dx with IDC in Nov.
I was diagnosed Septmember with DCIS in remaining breast, estrogen + , was told by BS that I would not need any chemo, rads or tamoxifen with MX. I was surprised after 20 years of vigilance and worry not to have follow up treatment with this new cancer. I called my oncologist who is very cautious and he said the same thing as BS. I have complete trust in both doctors. So it was easy decision for me to choose MX (sort of;). Only wish, tho it never crossed my mind at the time, that I had a bmx 20 years ago.
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I had very similar pathology DCIS gr 3 with necrosis, had BMX , and found ADH in prophylactic side I also do not need to take tamoxifen where I chose bilateral . No radiation or chemo. So I am very happy I chose bilateral. Where I was under 40 at diagnosis insurance covered genetic testing. BRAC 1 and 2 neg. Reason for testing was to see if ovaries should be removed. I am to be followed yearly to check for any enlarged lymph nodes and check skin around reconstruction since they cannot absolutely be certain of getting every cell of breast tissue- but odds are extremely low for recurrance/new BC in light of BMX. Best wishes! Good luck with DIEP. Goose
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Hello - Wow, thanks for all of the replies!
Barb44 - I decided to wait on reconstruction because I wanted to make sure the cancer thing was all resolved before moving on. PS said that if radiation were necessary, then I would have to wait 6 months, and the radiation could cause problems with the DIEP if done at time of BMx. At this point, it works out better for my work schedule, too. That surgery is scheduled for April 8th.
Also - I had genetic testing done, and negative for BRCA 1 and 2, which means I keep the ovaries! I also wanted to have that determined before the reconstruction.
I finally called my BS and the nurse with questions about HER-2. They did put in a request to have it tested, moreso to 'shut me up' than anything else I think! I haven't gotten those results back, yet, but at least I think having a piece of mind that all testing that is possible was done. I just have this foreboding feeling that I still have some breast tissue and skin that was missed, etc. I'm usually not a worry-wart at all. What bugs me the most is that it bugs me!
Hopefully all is well with everyone else.
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I was diagnosed with IDC and DCIS..IDC was grade 1, DCIS was grade 3.....IDC was ER/PR + HER2NEU negative........I had bilat mast with TRAM recons, no chemo, no rads.......No nodes were involved......I had SNB and AND.......No cancer in any of the 6 nodes removed.......I was on Tamoxifen for about 9 months......Had to have ooph and hyst because of cysts and thickening of uterus lining......GynOnc said probably from Tamoxifen as it does this to soem women but we could not rule out ovarian or uterins cancer either......Thank God it turned out no cancer!......I still wound up losing my ovaries, uterus and cervix.....It was a hard decision but I am glad I did all I did....I feel confident that I hve beat this disease and do not regret taking Tamoxifen.....I went on Femara after surgery but could not tolerate the side effects so switched to Arimidex which is so mush easier on my joints.......Good luck to ou all.......
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