I want double mastectomy, but the doctor refuses!

Hi Alitxu, did the doctor explain why he recommends against double mastectomy? Also, if you filled in your health profile including treatments you had it might be easier to understand your situation.

Find a new doctor. I am very glad I got a BMX because my breasts were ticking time bombs and while I found the one early, I may not be so lucky in the future. My breasts were very dense and full of cysts so my cancer got missed at least for a couple of years. You have every right, if you live in the US, to get what you want if it's a BMX... with socialized medicine in other countries, docs have more say, but not here.

Hi Alicia,

most doctors don't consider LCIS cancer. They say it's just a marker for increased risk, even though the latest research shows that it could be a precursor. Sometimes BS would even refuse to do an excisional biopsy (happened to me). If you visit LCIS topics on this board, you'll find a lot of information.

Good luck,

Lisa

Alitxu, I have extensive LCIS in both breasts, with ILC in the left. The ILC was only found on excisional biopsy. Before the ILC was even found, my breast surgeon was talking about BMX due to extensiveness of the LCIS. So at least for me, LCIS alone was enough for her to recommend BMX. Now that invasive has been found, she really feels that's what needs to be done. My second opinion doc was more willing to monitor me, but also felt that I was a very high risk and very likely to have a recurrence.

FIND A NEW SURGEON

Hi Alitxu:

I am sorry you are dealing with a second diagnosis.

Formally speaking, with a prior diagnosis of pure DCIS treated by lumpectomy alone (without radiation), a person newly diagnosed with DCIS or invasive breast cancer in the same breast would have the option of lumpectomy plus radiation or mastectomy.

However, LCIS (noted in your second post) is an in situ disease as others have noted and is treated differently. While LCIS appears to warrant excision, in the absence of a finding of DCIS or invasive cancer in the surgical pathology, the patient would have the option of considering risk reduction and surveillance (periodic imaging).

I am a little confused about your prior diagnosis. You indicated above that fifteen years ago you had DCIS, which is by definition a non-invasive cancer and could have been treated with lumpectomy alone (and would never be treated with chemotherapy either then or now). But in your first post, you mentioned having received CMF chemotherapy for a 3 cm tumor, which would necessarily mean a prior diagnosis of invasive breast cancer:

https://community.breastcancer.org/forum/5/topics/848245?page=1#post_4809179

If you had a lumpectomy for a 3 cm invasive tumor that warranted CMF chemotherapy, you would most likely have also received a course of radiation therapy as well, and that could limit your options in the event of a second, same breast diagnosis of DCIS or invasive disease.

It would be helpful if you could fill out your profile information with previous diagnoses and treatments, and what you know so far about your recent diagnosis.

BarredOwl

My Dr told me she was going to remove one breast, but after my brca results came back positive she said I will have a double mast

LCIS is just a marker that you may be at increased risk for developing cancer. Since you already had cancer it is likely you may very well have had it all along as it tends to be bilateral and multifocal. If you have had or have an excisional biopy and nothing else is found then it would seem to me that you are in no different status than you were before it was found

Hi Alicia,

I live in Canada where we also have socialized medicine. My mother had breast cancer twice. I have very dense and cystic breasts and the cancer I have an exceptionally aggressive. I told my surgeon that I wanted to have a double preventative mastectomy. She told me that the studies show that there is no scientific evidence that it will improve my overall survival. She said that what is most likely to kill me is a metastasis from the breast cancer I currently have, not the breast cancer I may develop in the future (although she did so using much more delicate language!). When I told her that I wanted to go ahead despite her warning, she quickly agreed and didn't push back at all. My sense was that she was obliged to warn me of the risk that mastectomy may not improve overall survival. However, she readily acknowledged the quality of life issue and agreed to perform the surgery. Two other doctors I have spoken to said that a preventative, double mastectomy is a good idea for me.

Best of luck with your decision,

Stephanie

alicia,

The risk of infection with a mastectomy is why my team decided to do a lumpectomy first, them chemo, them mastectomy followed by radiation. Reconstruction will come one year following radiation. I have read lots of cases on these boards of women developing infection post mastectomy. My doctors said that they didn't want anything to delay the chemo. I asked my surgeon to be very aggressive during the lumpectomy because I knew I was going to have a mastectomy later on and didn't care what I looked like. She took out a 6 by 6 cm chunk and got clear margins. My boobs are now very lopsided but I couldn't care less!

My sense is that in the socialized medicine environment, doctors are encouraged to look at things on a "population level", I.e., would this treatment be useful for an entire population? Does the benefit warrant the cost over an entire population? (it becomes a numbers game--even though there might be overall benefit to you personally, if the statistics don't bear this out on a population level, you don't get the treatment/screening). Can the system bear the cost if everyone did the treatment? You really do have to advocate for yourself to be seen as an individual and get your doctor on your side.

In the US, you are always a candidate for BMX if that is what you want for peace of mind and/or symmetry. But know that standard-of-care here in the U.S. for an ipsilateral (same breast) recurrence in a breast that has ever been irradiated is single mastectomy, since a breast cannot safely be irradiated twice (and doctors here generally don't do lumpectomy without radiation if the tumor was invasive, or DCIS with an intermediate-to-high OncotypeDX-for-DCIS score. Not sure about LCIS, since many doctors don’t even consider it cancer and just prefer to do close surveillance).

ScotBird,

Actually that is not the case. from this very website in 2016: The Survival rate is equal, but local reoccurance rates are slightly higher with lumpectomy than Mastectomy.

• There is a somewhat higher risk of developing a local recurrence of the cancer after lumpectomy than after mastectomy. However, local recurrence can be treatesuccessfully with mastectomy.

I was diagnosed with BC in my right breast, had a lumpectomy and four lymph nodes removed The lumpectomy had clear margins and the lymph nodes were clear.

I'm in Canada and my bilateral was done with no question. Besides ultra sounds I had extensive mammograms after bc diagnosis with biopsies... 30 needles on the right side.... 18 on the left.

After the pathology report came back from the bilateral mastectomy and to my surgeon's surprise there was a small mass in the center of my left breast that was missed by all the diagnostic procedures.

It is not a bad idea to do both breasts at once. For your own peace of mind, which is why I did it in the first place,. Try to find a surgeon who agrees with you. If you are the kind of person, like I am, who would think of the other breast as a ticking time bomb the stress alone is going to make you sick. Because I had the bilateral I am not in line for any diagnostic procedures in the future. The avoidance of the hideous experience of the biopsies is reward enough.

There was an initial suggestion that i should go with just a lumpectomy which would have meant radiation and chemo and I asked about a mastectomy on bc side and was told that would avoid the radiation and chemo but I would still be coming in quite regularly to check on the other side. Now all I'm dealing with is reconstruction.

Chemo does NOT have anything to do with the type of surgery you have. It is a separate issue.

Beesie is one of the resident experts on the boards. I am copying a very well thought out post she did on this topic. I hope it will be helpful for you as you make these tough decisions.

"Some time ago I put together a list of considerations for someone who was making the surgical choice between a lumpectomy, mastectomy and bilateral mastectomy. I've posted this many times now and have continued to refine it and add to it, thanks to great input from many others. Some women have gone through the list and decided to have a lumpectomy, others have chosen a single mastectomy and others have opted for a bilateral mastectomy. So the purpose is simply to help women figure out what's right for them - both in the short term but more importantly, over the long term.

Before getting to that list, here is some research that compares long-term recurrence and survival results. I'm including this because sometimes women choose to have a MX because they believe that it's a more aggressive approach. If that's a big part of someone's rationale for having an MX or BMX, it's important to look at the research to see if it's really true. What the research has consistently shown is that long-term survival is the same regardless of the type of surgery one has. This is largely because it's not the breast cancer in the breast that affects survival, but it's the breast cancer that's left the breast that is the concern. The risk is that some BC might have moved beyond the breast prior to surgery. So the type of surgery one has, whether it's a lumpectomy or a MX or a BMX, doesn't affect survival rates. Here are a few studies that compare the different surgical approaches:

Lumpectomy May Have Better Survival Than Mastectomy

Twenty-Year Follow-up of a Randomized Trial Comparing Total Mastectomy, Lumpectomy, and Lumpectomy plus Irradiation for the Treatment of Invasive Breast Cancer

Twenty-Year Follow-up of a Randomized Study Comparing Breast-Conserving Surgery with Radical Mastectomy for Early Breast Cancer

Now, on to my list of the considerations:

• Do you want to avoid radiation? If your cancer isn't near the chest wall and if your nodes are clear, then it may be possible to avoid radiation if you have a mastectomy. This is a big selling point for many women who choose to have mastectomies. However you should be aware that there is no guarantee that radiation may not be necessary even if you have a mastectomy, if some cancer cells are found near the chest wall, or if the area of invasive cancer is very large and/or if it turns out that you are node positive (particularly several nodes).
• Do you want to avoid hormone therapy (Tamoxifen or an AI) or Herceptin or chemo? It is very important to understand that if it's believed necessary or beneficial for you to have chemo or take hormone therapy, it won't make any difference if you have a lumpectomy or a mastectomy or a bilateral mastectomy. (Note that the exception is women with DCIS or possibly very early Stage I invasive cancer, who may be able to avoid Tamoxifen by having a mastectomy or a BMX.)
• Does the length of the surgery and the length of the recovery period matter to you? For most women, a lumpectomy is a relatively easy surgery and recovery. After a lumpectomy, radiation usually is given for 6 weeks. A mastectomy is a longer, more complex surgery and the recovery period is longer.
• How will you deal with the side effects from Rads? For most patients the side effects of rads are not as difficult as they expected, but most women do experience some side effects. You should be prepared for some temporary discomfort, fatigue and skin irritation, particularly towards the end of your rads cycle. Most side effects go away a few weeks after treatment ends but if you have other health problems, particularly heart or lung problems, you may be at risk for more serious side effects. This can be an important consideration and should be discussed with your doctor.
• Do you plan to have reconstruction if you have a MX or BMX? If so, be aware that reconstruction, even "immediate" reconstruction, is usually a long process - many months - and most often requires more than one surgery. Some women have little discomfort during the reconstruction process but other women find the process to be very difficult - there is no way to know until you are going through it.
• If you have a MX or BMX, how will you deal with possible complications with reconstruction? Some lucky women breeze through reconstruction but unfortunately, many have complications. These may be short-term and/or fixable or they may be long-term and difficult to fix. Common problems include ripples and indentations and unevenness. You may have lingering side effects (muscle pain, spasms, itching, etc.) on one side or both (if you have a BMX). If you don't end up with symmetry (symmetry is not a sure thing by any means, even if you have a bilateral mastectomy with reconstruction done on both sides at the same time), will you regret the decision to remove your breasts or your healthy breast? Are you prepared for the possibility of revision surgery?
• How you do feel about your body image and how will this be affected by a mastectomy or BMX? A reconstructed breast is not the same as a real breast. Some women love their reconstructed breasts while some women hate them. Most probably fall in-between. Reconstructed breasts usually looks fine in clothing but may not appear natural when naked. They may not feel natural or move naturally, particularly if you have implant reconstruction. If you do choose to have a MX or BMX, one option that will help you get a more natural appearance is a nipple sparing mastectomy (NSM). Not all breast surgeons are trained to do NSMs so your surgeon might not present this option to you. Ask your surgeon about it if you are interested and if he/she doesn't do nipple sparing mastectomies, it may be worth the effort to find a surgeon who does do NSMs in order to see if this option is available for you (your area of cancer can't be right up near the nipple).
• If you have a MX or BMX, how do you feel about losing the natural feeling in your breast(s) and your nipple(s)? Are your nipples important to you sexually? A MX or BMX will change your body for the rest of your life and you have to be prepared for that. Keep in mind as well that even if you have a nipple sparing mastectomy, except in rare cases (and except with a new untested reconstruction procedure) the most feeling that can be retained in your nipples is about 20% - the nerves that affect 80% of nipple sensation are by necessity cut during the surgery and cannot be reconnected. Any breast/nipple feeling you regain will be surface feeling only (or phantom sensations, which are actually quite common and feel very real); there will be no feeling inside your breast, instead your breast will feel numb. For some, loss of breast/nipple sensation is a small price to pay; for others, it has a huge impact on their lives.
• If you have a MX or BMX, how will you deal emotionally with the loss of your breast(s)? Some women are glad that their breast(s) is gone because it was the source of the cancer, but others become angry that cancer forced them to lose their breast(s). How do you think you will feel? Don't just consider how you feel now, as you are facing the breast cancer diagnosis, but try to think about how you will feel in a year and in a few years, once this diagnosis, and the fear, is well behind you.
• If you have a lumpectomy, how will you deal emotionally with your 6 month or annual mammos and/or MRIs? For the first year or two after diagnosis, most women get very stressed when they have to go for their screenings. The good news is that usually this fear fades over time. However some women choose to have a BMX in order to avoid the anxiety of these checks.
• Will removal of your breast(s) help you move on from having had cancer or will it hamper your ability to move on? Will you feel that the cancer is gone because your breast(s) is gone? Or will the loss of your breast(s) be a constant reminder that you had breast cancer?
• Appearance issues aside, before making this decision you should find out what your doctors estimate your recurrence risk will be if you have a lumpectomy and radiation. Is this risk level one that you can live with or one that scares you? Will you live in constant fear or will you be comfortable that you've reduced your risk sufficiently and not worry except when you have your 6 month or annual screenings? If you'll always worry, then having a mastectomy might be a better option; many women get peace of mind by having a mastectomy. But keep in mind that over time the fear will fade, and that a MX or BMX does not mean that you no longer need checks - although the risk is low, you can still be diagnosed with BC or a recurrence even after a MX or BMX. Be aware too that while a mastectomy may significantly reduce your local (in the breast area) recurrence risk, it has no impact whatsoever on your risk of distant recurrence (i.e. mets).
• Do you know your risk to get BC in your other (the non-cancer) breast? Is this a risk level that scares you? Or is this a risk level that you can live with? Keep in mind that breast cancer very rarely recurs in the contralateral breast so your current diagnosis doesn't impact your other breast. However, anyone who's been diagnosed with BC one time is at higher risk to be diagnosed again with a new primary breast cancer (i.e. a cancer unrelated to the original diagnosis) and this may be compounded if you have other risk factors. Find out your risk level from your oncologist. When you talk to your oncologist, determine if BRCA genetic testing might be appropriate for you based on your family history of cancer and/or your age and/or your ethnicity (those of Ashkenazi Jewish descent are at higher risk). Those who are BRCA positive are very high risk to get BC and for many women, a positive BRCA test result is a compelling reason to have a bilateral mastectomy. On the other hand, for many women a negative BRCA test result helps with the decision to have a lumpectomy or single mastectomy rather than a bilateral. Talk to your oncologist. Don't assume that you know what your risk is; you may be surprised to find that it's much higher than you think, or much lower than you think (my risk was much less than I would ever have thought).
• How will you feel if you have a lumpectomy or UMX and at some point in the future (maybe in 2 years or maybe in 30 years) you get BC again, either a recurrence in the same breast or a new BC in either breast?Will you regret your decision and wish that you'd had a bilateral mastectomy? Or will you be grateful for the extra time that you had with your breasts, knowing that you made the best decision at the time with the information that you had?
• How will you feel if you have a bilateral mastectomy and no cancer or high risk conditions are found in the other breast? Will you question (either immediately or years in the future) why you made the decision to have the bilateral? Or will you be satisfied that you made the best decision with the information you had?

.I hope that this helps. And remember.... this is your decision. How someone else feels about it and the experience that someone else had might be very different than how you will feel about it and the experience that you will have. So try to figure out what's best for you, or at least, the option that you think you can live with most easily, given all the risks associated with all of the options. Good luck with your decision!"