Many of today’s newspapers, including the New York Times and the San Jose Mercury Newscarried stories about a study published in the online issue of the Journal of Clinical Oncology that found that a small but growing number of women are choosing to have their healthy breast removed at the same time they have their cancerous breast removed—even though having this surgery will not improve their survival.

As I travel around the country, I have met women who have made the decision to have a double mastectomy as well as women with friends who have chosen this course of action. Some of the women I have met, like those quoted in these stories, say they knew a double mastectomy wouldn’t help them live longer, but that they did it anyway because they felt that, at some level, they would know they did everything possible.

I certainly understand and empathize with a woman’s decision to be aggressive in her treatment. But I fear that part of the reason for this increase in double mastectomies is because surgeons are not explaining to women that:

1.There is a 5-10% recurrence rate in the scar with a mastectomy, which is comparable to the 5-10% local recurrence rate with lumpectomy.

2. What you do locally does not impact survival.

3. That the risk of a woman getting cancer in the other breast is not that high and is often lower than the risk of recurrence of the cancer.

Another contributing factor: It’s easier to do surgery and reconstruction when a woman has a bilateral mastectomy, and the reimbursement rate is higher, too. So, I think our health care system is contributing to the problem.

I was reminded yet again of the role our health care system plays in women’s decision-making at last year’s San Antonio Breast Cancer Symposium when a research team reported that we do more mastectomies in the US than in Europe. This is not because women in the

US are more likely to need a mastectomy; it’s because of the fee-for-service health care system combined with the American “more must be better ” attitude—which plays out in many ways, including unneeded double mastectomies.

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44 Responses to Double Mastectomy Decisions

  1. joelmaners says:

    The reason for the plethora of mastectomies, I’m convinced, is the lack of skilled breast surgeons. You are much more likely to have a mastectomy of your surgeon is a general surgeon than a breast surgeon. Many times a general surgeon does the surgery that he is most comfortable with. It takes more skill to perform a lumpectomy with close margins than it is to do a total mastectomy. It is often the surgeon’s preference that drives these decisions.

    The problem is the lack of breast surgeons. To get to one, you have to travel to a larger metropolitan area. Many women either are unaware of the options (like we were) or they are unwilling or unable to travel the distance necessary to receive that type of care.

    Once a woman commits to a mastectomy and the thinking behind it, they simply say “why not” to having the other breast removed. Even with the guarantee of reimbursement, I can’t imagine that there are allot of breast reconstructions happening. I’d like to know the percentage of mastectomy patients who have reconstruction.

  2. Mary says:

    I strongly disagree that women are making decisions to have mastectomies because “surgeons are not explaining” the issues. That is a patronizing assumption. Women are fully capable of researching the issue on their own via the internet, the library or bookstore, and through second opinions. I gathered information from all three sources before choosing my treatment.

    So, why did I choose a bilateral mast? My original surgery was a lumpectomy which did not give clear margins. That left me with two choices: a second lumpectomy with poor cosmetic results or a mastectomy. I chose the mastectomy because I did not want to place an implant in a breast that would need regular mammograms. For the sake of symmetry, I decided to do a mastectomy on the healthy breast, again because I thought it unwise to do a breast lift with an implant on a breast that would need to be checked twice a year. I discussed this decision with my surgeon, my family doctor, and my oncologist, and we did not reach consensus on the decision!

    I am very happy with my results. I was diagnosed at a young age, and it was important to me to look good in swim suits and assorted outfits. In my opinion, the trauma of losing breasts is waaaaay overstated.

    A year after my double mast, I tested positive for a BRCA2 mutation. Now I feel an even greater sense of relief for getting the double mast.

    This is a very personal decision that women must make in the face of great anxiety and fear. Thank you, Dr. Love, for being such a great source of information.

  3. Mary says:

    Oh Joel,

    I don’t know percentages, but I had immediate reconstruction at the time of my mastectomies, and they turned out pretty darn cute!

  4. Janice says:

    I have had breast cancer twice – 10 years ago and 7 years ago. I had a mastectomy both times. The first time I had reconstruction and chemo. The second time my cancer was much worse and I had more chemo and radiation + reconstruction. Given the choice, doing it once would have been a great improvement. I had very little family history, which I was not aware of the first time. I have also had genetic testing and do not have one of the breast cancer genes. My odds of having a second breast cancer were very low. I went for all my checkups, etc, but the second cancer was hidden in my rather dense remaining breast. The amount of treatment required and the mental stress were unbelievable the second time. I only wish I had used the option (not given to me) to have a double.
    Janice

  5. Deirdre says:

    Well personally I choose bi-lateral because of the conflicting information I received from “good breast surgeons” in my town – I made the decision for safety and symytry. But I would also say, after taking responsibility for my own actions – that it is a growing industry – where there is what I refer to as “breast mills” occurring everywhere. A breast surgeon colaberates with a plastic surgeon so it is easy to offer the choice of bi-lateral and reconstruction. And of course there is the insurance company’s input!!! This isn’t the safest choice as the outpatient surgical facilities they use do not fall under the same safety scrutiny as does a fully certified hospital.

    By the way, I agree that there aren’t enough reconstructions being done OR being offered and I also believe that that is encouraged by the comments of the “survior” approach. Lets get these girls to give up their breast and wear that as a badge of honor! “I’m not defined by my breasts” well of course you are not! You are not defined by your nose or your finger but you should have the same ability to replace them through reconstruction and the insurance would address your nose or your finger without as much fuss as they do when it comes to the breast!

    Most states now require that insurance company’s pay for reconstruction (after mastectomy) as well as pay for the other breast to be modified so that both breasts match. But then most people today have very little health insurance so it’s a can of worms even with the laws to support this position.

    My insurance company was not cooperative, so I took matters into my own hands and paid for my re-construction from my retirement funds and THEN went back to my insurance company and forced their hands to pay! This way they paid for much more than they would have if I had gone through their doc’s AND I got to pick my own doc after much research. It’s a fight so be ready if you do it this way – and have the name of your Senator or Congressional Rep. handy BEFORE you starting down this path.

    Safety and symytry were the final reasons I choose bi-lateral. When the profession understands cancer better maybe it will be wise to consider other alternatives..

    I too did the genetic testing with negative results so I felt secure for about one month and then the genetic counselors advice of having an MRI (because my father died of breast cancer)resulted in an early detection. The genetic testing was also something I had to take responsibility for first and then have my insurance company pay as they didn’t believe that it should be done (BRCA1/2) because it was a male direct family member who had the breast cancer. Well they changed their policy after I educated them with a very large bill and support from my Senator!

    You have to fight to get a good diagnosis and you have to fight to get good treatment and God only know why more of us don’t just die from the stress of all of the fighting!!!!

    All the best to everyone going through this horror!

  6. Blaize says:

    I was diagnosed with DCIS noninvasive breast cancer in Dec’06 and wanted a double mastectomy to avoid reoccurance. I had to have the one breast removed because the tumor was to large They only found this out after an MRI which I had to have because of dense breasts and non clear margins. I was talked out of a double mastectomy by my surgeon, who told me that in 6 months when I had reconstruction I could elect to have the other one removed at that time. I am glad I waited since at age 60 I decided why go throught the ordeal. I have since had my healthy breast lifted, and am in the last stage of an implant doing the tissue expander. If I was not sexually active and younger I would have done it. But ladies remember, you lose the sensation of feeling in the breasts and NIPPLES when you remove and have reconstruction on both breasts. Too wierd for me. I wanted to save what was left of my one healthy breast and nipple as well as continuing to enjoy sex with my partner.
    I am on Tamoxifin for 5 years with no real side effects and loss of weight instead of gain!!!!! Tissue expander comes out Nov 30th, it is a long procedure but I am happy with the results so far. I love my surgical team!!!
    Barbara Blaize
    Portland, Oregon

  7. Deirdre says:

    Just a quick comment, I have NOT lost the feeling in my breasts (after restoration) however, so far there is no feeling in my new nipples – So I think you are correct Blaize about that part. And because of the decision of a bi-lateral I don’t need to do the Tamoxifin or Tamoxifin like drugs – at least that is what medical science believes today.. we’ll see about tomorrow .. Mine was also DCIS Stage 0, very small tumor but Grade 2/3.

    Best
    Deirdre

  8. Tara says:

    Is there any information on the demographics of woman having double mastectomies? I feel very fortunate and I think part of it is demographics. I had a double mastectomy w/reconstruction 7 month ago. I am 42 with 2 small children, had LCIS and BRAC 1 positive and had aunt, mother and sister all having breast cancer. My oncologist and breast cancer surgeon (both females at large teaching hospital with cancer center) explained all my options regarding treatment and gave me the time and information needed to make my own decision. My plastic surgeon is male and was one of 4 recommended by my breast surgeon. He is thoughtful and an excellent communicator. My insurance company was great. But, I live in a place surrounded by universities and went to a top research center that is used to dealing with well educated (meaning we tend not to be intimated by a doctors, respectful yes) and informed patients. My sense is that my doctors, because all of are involved in research and treatment, are not just in “it” for the $$.

  9. Deirdre says:

    Tara, good question and I hope someone answers it because even though I did have a tough time of things it was a University with a strong cancer expertise that sent me in the direction of the genetic tests AND a breast MRI. It was the community doc’s that were difficult to deal with and seemed to be confused as to how to proceed.. I did take most of the University’s advice but the community doc’s seemed to be out in left field… and yes perhaps in it for the $$.

    Best

  10. ellenjay says:

    I had a bilateral mastectomy last spring after being diagnosed with breast cancer (ILC)in my left breast and testing positive for BRCA 2. I agonized over the decision of having my healthy breast removed, but in the end decided my risk for a new cancer was great enough to warrant it. I am very glad with that decision and have not once looked back with regret. After going through chemo and radiation treatments, I know I never want to have to deal with cancer again if I can at all prevent it.

    I feel very lucky that I had a doctor who took the time to look at my family history, who coached me to get genetic testing, and supported my decisions for treatment.

  11. Mary N says:

    I went for routine annual mammography and it was suspicious on my left breast. I never feared mammography. I had a paternal aunt who had breast cancer about 25 years ago, but none of the other 11 women in my extended family had breast cancer.

    Biopsy revealed Ductal Carcinoma In Situ (DCIS) in the upper outer quadrant. Since additional areas in other quadrants appeared to be DCIS, my breast surgical oncologist recommended a left mastectomy. The MRI of my right breast was suspicious but a biopsy was negative, and my surgeon recommended another biopsy unless I was going to opt for a double mastectomy. I found diagnosis harrowing. If I did not opt for a double mastectomy, I would have to return every 6 months for mammograms and most likely I would frequently find that I needed to return for testing of one kind or another: MRI, biopsies. This return for testing would take another 6 weeks to get all the results and Dr. visits taken care of. If I faced that scenario every 6 months, I would feel cancer free for about 8 months of every year. The rest of the year I would be dreading upcoming mammographies, biopsies, waiting for pathology results and Dr.’s phone calls. That is traumatic. With a recurrence, I’d experience the trauma of cancer treatment a second time. I preferred to avoid the following:
    – a surgical biopsy requiring a larger specimen of breast tissue removal, general anesthesia, and time to heal.
    – nonsymmetrical breasts that would with aging continue to become more asymmetrical (I’ve seen asymmetrical breasts that were a big psychological burden)
    – the possibility of a second course of breast cancer surgery and reconstruction
    – constant visits to doctors
    – the reminder of my cancer treatment when I looked at 2 very different breasts
    – asking my family and friends to go through this with me a second time

    I saw some pictures of beautiful reconstructions that my plastic surgeon had done; the “after” pictures looked much better than the “before” pictures. I preferred to think of getting a surgical “uplift” complete with nipple and areola reconstruction.

    Fortunately I chose a double mastectomy. I had great support from my family and friends. I’m well on my way toward reconstruction, and I’ll have implants placed in January on my birthday. I find my breasts pleasant to touch and it seems to me that they are as sexual as I want them to be. For me a large part of sexual excitement is in my head, and at times I sense different erogenous zones. Sometimes the nape of the neck is sensitive.

    The final pathology report indicated in my left breast DCIS in 3 quadrants, as well as Lobular Carcinoma In Situ (LCIS) in 2 quadrants. In my right breast it reported LCIS in 1 quadrant. I have 3 friends who went thru lumpectomies first in one breast and then with recurrences opted for bilateral mastectomies. They were very angry that they had to be treated twice for breast cancer. I’m glad I avoided that.

  12. Dr.Mills says:

    We’ve gotten a couple of emails from women with BRCA mutations about double mastectomies. So, to clarify: BRCA 1 and 2 gene carriers are a special population, and bilateral mastectomies and oophrectomies are advised for these women because they are at very high risk of developing breast cancer in both breasts. Dr. Love’s original piece was not addressing the decisions these women make. Rather, it was talking about women who are not BRCA carriers who are choosing to have their non-cancerous breast removed. Before I left my surgery practice to focus on breast cancer research, I also saw a growing number of women who were requesting bilateral mastectomies. I educated them about the risks and benefits and this was the choice they made–and it was their choice to make. Dr. Love and I have been discussing this and we think that there are a variety of reasons that well-informed women make this choice. And as the blog entries by women who have made this choice illustrate, this was not a choice that they made lightly. Even so, the fact that more and more women were making this decision was one of the reasons that I wanted to go into research with Dr. Love to find a way to end breast cancer. When I first became a surgeon in the late 1980s there was a movement to “save the breast” and to show that lumpectomy with radiation was as effective as a mastectomy Now, even though women are more informed, perhaps the pendulum has swung the other way. But I do hope in my lifetime we will have another answer!!

    Dixie Mills, MD
    Research Director
    Dr. Susan Love Research Foundation

  13. Janice says:

    I want to say again that I do not have either of the breast cancer genes, but still had cancer at two separate times, two separate breasts. The cancers did not even resemble each other, so I had extensive testing the second time to make sure that the new cancer was not part of the first or part of a non-breast cancer. Recovery would have been so much better both breasts has been removed at the same time. I am an estrogen negative cancer survivor.

  14. ntan says:

    I chose a double masectomy for several reasons:

    1) I have no faith in screening techniques. I am 43 and have had regular mammograms, clinical exams, etc. And still, only 8 months after my last “normal” mammogram I have been diagnosed with invasive lobular carcinoma. After surgery last week, I was staged III – a 5.2 cm tumor with 2 positive nodes. Although the risk is low for a primary cancer in the other breast, I didn’t want to spend the rest of my life worrying every six months that the inadequate screening techniques failed again to catch a growing cancer.

  15. sleeze says:

    I must respond. I had bi-lateral
    mastectomies, of course I had
    bi-lateral cancers which is rare,
    I am so lucky. Anyway in 1997 I had
    a stage 1 cancer in the left breast,
    at that time I had the radiation and
    lumpectomy. In 1998 they found another
    stage 1 cancer in the other breast
    and my internist did not want me to
    have the bi-lateral mastectomies so fast,
    I still did not have to do that.
    In my case it was resonable because
    my cancers are believed to be genetic.
    But even putting that aside, I have
    second guessed alot of things in my life,
    but never this decision. Not a day
    goes by that I am so glad I made this decision. I know any doctor who reads
    this response will not want to hear my reasons, but I now do not have to count
    on a doctor to find my next cancer in
    time. I fought hard to find my two stage
    one cancers, I even paid for my ultrasounds
    because neither of my cancers showed
    on the mammograms. And in the 10 years since my cancers where found, woman
    are having a harder time getting to see
    the doctors they need and getting the
    medical care they need. I am so sorry,
    Dr. Love, I can not help it, I would
    do it over again if I only had cancer in one breast. I know longer have to depend
    on any doctor to find that next cancer
    in my very dense breast tissue.

  16. Deirdre says:

    Hi – Now after the final reconstruction I have to say well, I think I made a good decision about the bi-lateral.. did I make a good decision though about my plastic surgeon – NO!

    I did my homework, I got references and had four consults and selected who I believed to be one of the best PS in our community. I saw those beautiful pics of the “after work” too, how foolish I was! The PS didn’t do ANYTHING we had agreed on in the two consults I had with him. Now he appeared to be very interested BEFORE the surgery but when I was asleep (which by the way – long story – but he and the aneth. talked me into that too. I had the implant placed after the mastectomy and intended to have only a local that he said was fine at the consult!) But when I asked him why he changed the plans and added two new incisions he didn’t want to speak with me and when he finally did (because I reminded him of his obligation) he had no reason, let alone medical one, for changing the plan. There are many things that need correcting, revision, after I reminded him about the Board of Medical Examiners he agreed to fix them or at least operate on me again – but the more I thought of that the more I was afraid of what I would wake up looking like. I will not allow him to touch me again! And I think I will be approaching the Board because the man lied to me! So please be careful about those before and after pics – I am marred for life!

  17. ellenjay says:

    Oh Deidre,
    It is over a month since your last post, but I am just seeing it now and feel for you and your predicament. You do not have to feel “marred for life” from this horrible experience with your plastic surgeon. There are plastic surgeons out there who really are artists and experts in this field and who can “fix” botched reconstructions. Please visit the message board on the website wwww.facingourrisk.org. It is an organization devoted to women with hereditary cancer and there are many posts from women who have gotten great results. Some have had bad reconstructions redone, and are so pleased with their results. They are a very supportive group of women and you can post your questions and get great support for your predicament.
    My surgeons recommended delaying reconstruction until I was finished with all of my treatments, so I have not been down that road yet. I am just researching my best options and am looking into traveling to New Orleans (from Oregon) where the doctors specialize in reconstruction. They are experts in their field. I don’t blame you for not wanting your p.s. to touch you again, but I know with a little research you can find recommendations for one that can make you feel beautiful again.

  18. Deirdre says:

    It is a few weeks since we all posted and I want to be clear about one thing. It is BECAUSE of lack of trust and faith in medical science that I (and others) make such drastic decisions! 30 years after my close family member was diagnosed and .. still.. really no answers. I applaud this organization for taking matters into their own hands, but it is not lack of education on the part of the patient that is making us go so extreme.. it is seeing all the confussion in the doc’s we work with! No one really know yet and I hope that changes soon as I have daughters and I want them never to have to make such a choice.. but still I made it to LIVE in a medical environment of very little answers..

    Thanks!
    PS Thanks ellenjay for your kind post – I will eventually get over this reconstruction.. I am just not there yet.. I know that there are other PS out there who are “artists” I stayed in town because my primary care doc was concerned that if things went wrong he would be around and close to help me.. I respect him so I did what he asked.. I have an appointment with another ps next month (March 08) so I am coming around.. thanks for your concern!!!

  19. MIMS SHEPAS says:

    ALL THIS IS INTERESTING AND EDUCATIONAL, I AM FACING REOCURRANCE OF CANCER FROM FIVE YEARS AGO , JUST HAVING TWO BIOPOSYS DONE NEXT WEEK, BUT IF IT IS RETURN OF CANCE I KNOW I WILL HAVE TO MAKE THE BIG DECISION OF WHAT TO DO, MY LUMPECTOMY LEFT A TERRIBLE WHAT THEY CALL DEEP DIMPLE IN THE BREAST ,HAD TWO STAPH INFECTIONS, DURING THAT TIME, SO YES THIS TIME IF IT IS A RETURN OF CANCER I WILL HAVE TO HAVE THE BREAST ROMOVED, THE OTHER BREAST SEEMS TO BE FINE, HOW DO I MAKE THE DECISION, WHERE DO I START, ESPECIALLY WITH A HMO???HOW CAN I GET THEM TO LET ME SEE A HIGH END MEDICIAL FACILITY IN HELPING ME MAKE THE RIGHT DECISION, I AM SURE I’M THINKING OF ALL THIS AS THE CART BEFORE THE HORSE, BUT I’M NOT YET SEEING THE GLASS AS HALF FULL, I KNOW I STILL HAVE TO WAIT FOR THE PATH RESULTS TO COME IN, BUT FEEL I NEED TO DO SOME INVESTAGATIONS. , ANY COMMENTS WILL BE HELPFUL..THANKS MIMS

  20. pberon says:

    MIMS,

    I think a good place to start is to gather copies of all your medical records and keep them at home.

    Then let’s make sure you are seeing the proper surgeon. I’m a big believer in a second opinion and I urge you to get one from a dedicated breast surgeon and preferably a surgical oncologist.

    Then take all your records to him/her and use knowledge to help make the best decision for you.

    pberon
    http://breastcancertx.blogspot.com/

  21. MIMS SHEPAS says:

    Thank you for the response to my first post, now I have had the bioposys and both are cancer, one is calcifications, and the other was a mass, both new and not connected to my first one, but in the same breast. The oncologist and primary doctor both said mascetomy, I knew that if it came back that would happen its been 7 years.I had chemo, radiation , lost my hair the whole 9 years, I am now 70, this time I want re construction was never offered it before.
    I belong to a HMO and am having a hard time . I will be seeing the surgeon this Tuesday, and havaing a Pet Scan on Thurs…I also want a second openion, as the surgeon is a general surgeon not a breast surgeon. I think I can get my primary to send me to a breast/surgeon and plastic surgeon in another city.
    my oncologist said i’m expecting high end health care with a HMO and if want that I should one move to another city,and 2 get a ppo, told him next year I do plan to get a ppo, but not move, but am willing to drive to a better health center.
    right now i’m in tears, scard, upset, all that goes with this reocurance of cancer of the breast. Help…just bought the updated book The Breast Book, it helped me before , but now its makeing my cry. have a lot of respect for Susan Love M.D would like to hear her comments on this. sincerely Mims Shepas..

  22. MIMS SHEPAS says:

    HI AGAIN, WELL DIDN’T HEAR FROM ANYONE BUT TODAY HAD A PET SCAN, WILL GET RESULTS NEXT WEEK, ALSO SAW THE SURGEON ,HE SAID THE CANCER IS INVASIE AND SPREADING AS WE SPEAK AND I DON’T HAVE THE TIME TO GET A SECOND OPENION, SO WILL GO WITH HIM, A DOUBLE BI LATERAL WITH RECONSTRUCTION WILL SEE THE PLASTIC SURGEON SURGEON TOMORROW, AND THEY THEY WILL HAVE TO COORDINATE TO GET THE SURGERY DATE AS TO BOTH BE THEIR I GUESS. NOT SURE EVEN WHAT THE PS WILL SAY. AGAIN THE HMO STINKS WILL GET A PPO NEXT TIME. CAN’T STOP CRYING AS I KNOW WILL HAVE TO HAVE CHEMO AGAIN BUT NOT RAIDIATION , BUT THE FACT OF LOOSING MY HAIR AGAIN IS DEVISTATIONG TO ME AT 70 YEARS OLD.

  23. MIMS SHEPAS says:

    going to try one more time, not getting any response to my comments here, today I saw the Plastic Surgeon, he seemed nice, he told me of my options for PS, but…..when I told him that the surgeon said it was imperitive to get this done stat or urgent in the next week or so, he said “it won’t happen” my surgery is approved , but he still has to put in for approval the appt I had today he said was just a concult…after he gets the approval for his part which would be putting in the strechers, after the mastcetony , he and the primary surgeon will have to coordinate for the surgery date.
    I said that would be fine if its done in the next two weeks, as my surgeon said this is so invasive it is growing as we speak, i’m scard, he then said the surgeon was over reacting, and it would be ok to wait for 3 -6 more weeks and I would be ok…now I am very confused and worried. so after talking to my family they are saying I should just get the double bi lateral done and get the cance out, then wait until this heals and get the chemo and then get the recontstruction done. ..I’m tending to agree, the other thing is the PS has never worked with my surgeon, and he also said he was not fond of the local hospital I have to go to, which again gives me doubt as to my care there. I can’t go to a high emd hospital as of my HMO….
    can some one please give me some advise here asap. ?? thanks for you time, and advise in advance, Mims or send to my e mail at :shepas@verizon.net
    I’m thinking if I do it this way, maybe my primary who is the cheif of staff of this hospital will at least try to get me in with the PS that the surgeon likes to work with even if he has to fight the group he is in that makes the final decision..or that I will write to them or get a advocate but don’t know how to do that as yet, maybe will call the 2 4 hour hot line of the AMC??

  24. lucy says:

    Hi, Happy B-day to me, on monday I will be having a double mastectomy. I was diagnosed with ductal carcinoma not sure if any nodes involved. I have it in one breast and have chosen to to have the other one removed, no reconstruction , I am so small and I am ok with this, just afraid of the pain and if I have to have any chemo, trying to stay completely positive, but am having my moments. Best to all of you that have shared your experiences, you really have helped me.

  25. eseidler says:

    I was diagnosed with extensive DCIS in my left breast six years ago. It was pretty extensive in the ducts so would have needed a mastectomy regardless, but I went to the breast surgeon (one of the best in California) and requested a bilateral mastectomy. I knew that for my own piece of mind, it was the best option for me.

    I’m not ignorant to the issues around breast conservation. While in college I did extensive research into the history of the radical mastectomy, evolution of the two-stage biopsy procedure, etc.

    I knew that I would always worry about the other shoe dropping as to my “healthy” right breast. It turns out I had some micro-invasion in my left breast and atypical cells in my right…..had immediate reconstruction with implants and am very happy with the results. I actually may have foregone reconstruction entirely had it not been for the fact I have a young daughter and thought it important that she see her mom as healthy and whole…..

    I have had no regrets about my decision to have a mastectomy. I think that unless you’ve been there, you can’t judge why a woman chooses that path. Good surgeons will respect and support their patients and their wishes…..

  26. MIMS SHEPAS says:

    well I”m 7 weeks out of the mastcetomy, and have been full of fluid for 6 of the weeks, going in to see the surgeon every week to be asperated. He said it will not harm me to start the chemo, but the chemo nurse said no way, she won’t start until all the fluid is gone, she said aske them to get more aggressive. so I did, they said maybe they will put the drains back in for a week or so, and see what happens. fine with me, but that was over a week ago, so tomorrow go again to the surgeon and will put him on the spot. other than that I feel mutalated, hate looking at the scars, they are uneven, been binding and wearing a sports bra, to no avail, still fluid. my whole chest is numb, this is the pits, and now the chemo , been there done that before and loosing my hair is not a happy thought. just can’t get to happy as yet. .will now have to wait until chemo is over to have reconstruction done, so will talk to my primary in a few months about referals. the fist PS I saw I don’t want to return to. . sincerely Mims

  27. Carole says:

    I have been fighting hydradentitis with my breast for 20 plus years. Having several surgeries,lots of pain and being on antibiotics of and on the whole time. Last year I had a partial masectomy on my left breast. Even after that I’ve been back in the hospital getting IV antibiotics. Nothing seems to work. My doctor has now gotten it approved with my insurance to have a complete bilateral masectomy. I don’t have breast cancer I just keep getting infections in my breast. I am suppose to go to a infectious disease specialist on Monday the 30th, but this appointment is mostly only being done to reassure me that nothing else can be done and that the masectomy is my only choice, or continue to live with the problem. I’m tired of having to go to the doctor all the time because of this and tired of being in the hospital for IV antibiotics. I’m also scared about the masectomy, I have very large breast, always have and I just keep thinking about how I’m gonna look with out them. I already have one scar on my chest from having open heart surgery at the age of 37, I 44 now. I’m so confused but at the same time I want this all to stop.

  28. Debra says:

    I was just wondering if or why the areola part of the breast would be removed. Also, if the cancer is confined in the milk ducts; then why can’t a person get their milk flowing and drain out the cancer as well, lol!

  29. Leila says:

    My breast issue shows invasive ductal carinoma with tubular features as well as background grade 2/3 ductal caricinoma. I am single mum with a 14 year son. Thinking of doing a skin sparring mastectomy. Your thoughts on this journey are appreciated.

  30. carolyne says:

    I am with you up there Diedre…went through the same thing. Am fine now but man…chemo is a nightmare. I have opted not to have reconstruction. Too much for me. it has been now lose to 6 years that I am breast cancer free and about 3 years since I had cervical cancer. A day at a time…god bless all the ladies.

  31. carolyne says:

    Thank you too mary for your post….all of these posts are really helpful. it is tough having breast cancer and going through all it entails…i was DCIS both times, one more aggressive a form than the other but whatever…I just don”t want to ever have to got through any of that again ever. It was a nightmare but…at least now i can be of service to someone new to all of this and hel her along the road so that she won’t be as incredibly frightened as i was. With all of the money and all of the research i am amzazed we have not found a cure though i am happy we have come a long way since my grandmother’s day.

  32. Kennith Ma says:

    This is actually my very 1st time here, and I must say this is a truly fantastic website. I have uncovered a lot of fascinating stuff within your blog especially in its discussion. From all the fantastic comments on your blog posts, it seems like this is a very popular web site. Maintain the brilliant work.

  33. Enda Balda says:

    Did you go over or under the muscle? And what cc’s? Thanx so much – I am having my surgery May 27th and am still trying to decide the finer points.

  34. You you could change the webpage subject Dr. Susan Love Blog » Double Mastectomy Decisions to something more generic for your subject you write. I liked the the writing yet.

  35. Mabelle Buis says:

    Sweet post. I really enjoy reading this blog. Keep up the good work.

  36. Val says:

    I was diagnosed with Invasive Ductal Carcinoma with a 2.0cm lump. I was not asked which route I wanted to go on the lumpectomy. I really didn’t know I had an option. The lumpectomy margins were not clear, so they took a larger margin and it still wasn’t clear. The surgeon conferred with the oncologist and they decided I didn’t need a mastectomy. I have my last (6th) round of chemo on 1/18 and then start radiation after that. I am thinking of getting a second opinion and requesting a double mastectomy with reconstruction. My insurance is $610/mo and without employment I will probably not be able to maintain it. Plus I have a long divot in my breast. Also, I never want to go through this again. What do you think?

  37. Eden says:

    Wow. Just found this blog. Val – I had a lumpectomy before I had time to research and discuss intelligently options with the surgeon. That was 20Oct10. Now, at the final Chemo infusion, I want a double mastectomy. I cannot envision a life of perpetual fear when month after month I’d be confronted with mammograms, MRIs, or most savage of all, biopsies. It’s a business – and I think long-term mastectomies mean less money for the industry.

  38. lisamarie says:

    I would like to say that this web site is very interesting. I am an operating room nurse who was diagnosed with invasive ductal and lobular ca on 1/28/11.
    I am recently seperated from 2yr old daughter’s farther who was abusive.
    My experience has been life altering to say the least.
    mammogram did not pick up my tumor which was less than 1 cm. My docs as a routine practice do an mri. The mri bx of my other “healthy” breast detected a 12 cm dcis tumor.
    Before the mri bx I had already started to consider a bilateral mastectomy. with the results I definately decided for the bilateral mastectomy.
    I went from about 800cc breasts to 275cc breasts with immediate reconstruction. My ps would not even consider immediate reconstruction so I found one that would.
    I am five weeks out from the surgery and all is well so far. My lymph nodes were clear and I meet with an oncologist tommorow.
    One of my arms was severly injured due to positioning during the surgery. I have found that I have had to advocate very heavily for myself in this entire process and quite frankly I find it horrifying that Mammogram did not detect a tumor in my breast that was almost 6 inches long.
    I am so glad that I decided to have a bilateral mastectomy.
    I just pray that I can say the same thing in a year.

  39. lisamarie says:

    one last thing I would like to point out is that the size of the implants I got are no larger than the initial expanders that are placed.
    I believe that by adding a second surgery and a month or two of office visits to the ps to have your expanders filled adds to the amount of money the industry is making.
    my original ps would not consider immediate reconstruction even with the smallest available implant which is actually smaller than the expanders.
    I believe that immediate reconstruction maybe a better result in terms of getting your life back more quickly and feeling less traumatized after having your breast removed.

  40. Jean says:

    I have read with great appreciation all the comments on this site
    May 2011 6.2 cm lump r/b – lumpectomy reccommended – good margins taken – wonderful surgeon – now want to have double masectomy as r/b has 12 cysts – feel like I have a grenade in each pocket waiting to go off – I do not ever want to go through this chemo again – shocking
    have had 2 stays in hospital – chemo complications – just want to know that I have taken what steps I feel are correct – I am waiting for Genbetic testing results – long family history – looking more like braca 1/2 not good – as well as that sugeon at gyne hospital said to have ovaries out as a precautionary measure – he said all looks great – 3 days later – we would like you to come to our office – I was given total hysterectomy – appendix – omentum – everything cancer stage 3B – I was total shocked – my sister is in her late stages of ovarian cancer found at stage 4 – I had 5 yests all negative – to be told days after – positive -what a nightmare!
    Chemo will finish Jan 2012 and then Radium will commence – I would rarther have d/m as the Radium will affect ribs and leave scaring on portion of the lung –
    dont want to sound like an extremist – just want to have even a small bit of peace of mind and not have to face chemo again and be bald – have found this so humiliating and I am sick of these poisions they put into my body each week
    I live in Queensland Australia – I should mention that I am a public patient and the hospital are second to none and I am not complaining about the treatment or information – however – I founf it all overwhelming and was not comprehending the info – I have a better hold on it now thanks to you forum
    Cheers Jean

  41. Val says:

    I posted earlier on January 10th, 2011 when I was thinking about requesting a double mastectomy. It was an agonizing decision, but ultimately I did have a bilateral mastectomy and I am so glad that I did. One of my friends had only one removed and the cancer returned years later in the other one. I finally realized that his was a war over my life and I was going to fight to win, cutthroat, just like the cancer does. That’s when I knew that the double mastectomy was the correct thing to do. Minimize the chances of recurrence to the smallest fraction of a percentage possible. I don’t want to EVER to chemo again. I had the expanders placed and filled, and then replaced with the implants. I was not at all happy with the first result. I was so depressed. They were bumpy, small, and I still had a big divot where the lumpectomy was. I finally found a wonderful surgeon (Dr. Wandra Miles in Seattle) who redid the entire process for me with more correctly sized implants and added fat here and there for shape (paid by insurance). I have been very pleased with her and her work. She is also a survivor. I gained a lot of weight during chemo and it is hard to lose while taking anastrozole (Arimidex). As soon as I lose the weight I am going to have another reconstructive surgery to maybe increase the size a little and also to get rid of that divot. Then I think I will be done, with the exception of adding nipples and then tattoos. I finished chemo over two years ago. The one thing I want to say to all cancer warriors is this: Fight to win, fight cutthroat, advocate for YOURSELF and do what you need to do to be assured that you will beat it and it will NEVER come back. This IS a war for your very life. Fight to WIN. While you are fighting remember it is not “your” cancer, it is “the” cancer. Also, once you are healed, the cancer is not in “remission,” it is GONE. By the way, there is also a war going on for your soul. Not to preach, but you win that war knowing Jesus. :) Life can and will get better. Every day you are one day closer to realizing that!

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