No Guarantees

Women considering a pre-emptive masectomy should read the documents posted by "The Iodine Project" doctors on the Internet. Save yourself some time, money and worry.

Thankfully I live in Scandinavia where such operations are virtually free, one gets money during sick leave, too and no one can take your job while you're ill and reconstructions are also very affordable: one pays only for the hospital days and the cost is about 30-35 dollars a day. Health care should not be a priviledge but one of the basic rights for everyone.

@ 38 I had a mod. rad in lt breast. I begged them to remove the other too .. but it wa '82 and the philosophy was" if it atint broke, don't fix it" I did the diep flap 5 yrs later w/ implant, but have been very dissatisfied w/ it ever since. I still have to use a swim form over it to fill out the cup. The only way to look "normal" again is to start over and remove the rt. one or reduce it to match the left. I would definitely have them both removed if I could go back in time. It is a matter of aesthetics, viable solutions, and of course reducing possible reoccurance, it would be the best all-around fix.

I had double negative breast cancer in my right breast. It went undiagnosed despite regular mammograms. I opted for a bi lateral mastectomy followed by implants. During radiation I developed an infection and lost the right implant. After my chemo and radiation were complete I followed up with a plastic surgeon who performed a diep flap breast reconstruction on both breasts. My implants were hard and uncomfortable. My new breasts while not perfect feel and look great. My husband will tell you that as the scars have faded that he sometimes has to remind himself that I had breast cancer 4 years ago. I am thrilled with the result. While I don't know if a bi lateral mastectomy will have any impact on prolonging my life, but it did have an impact on my piece of mind and positive attitude during treatment. I continue to see my oncologist regularly and try my best to live a healthy lifestyle. A bi lateral mastectomy is a personal choice that should be made with the educated input of your oncologist, surgeon, OB/GYN and significant other.

I was initially diagnosed with breast cancer in 1997 and at that time opted for lumpectomies. Due to family problems I was unable to do the follow up radiation etc but generally felt okay. In 2006, my significant other learned I had NOT had a Mammogram since that time and requested I undergo a fulll check up. Cancer was found again.. i A core biopsy was given of the left breast only (which is where the cancer was identified) but I was told my best chances for survival were for a bi lateral mastectomy. Pathology later showed that cancer cells had indded formed in the right breast. I did opt for reconstruction and no they do NOT feel at all like my breasts ... I hate them but I also know I could not live flat chested. There is a great deal of thought that should be put into before going through any procedure... my story may be similar to others and totally unlike others... Make the best choice for you... for yourself... and then move forward. blessed be. bpike/mesa az/

Oh, and the comment about reconstructed breasts not feeling or appearing natural-NOT TRUE!

Depends on the skill of the surgeon and the materials/techniques used!

I LOVE my "new cancer free" breasts!!

diagnosed at age 27-had bilateral and NO regreats! 5year SURVIVOR!

First-yes, insurance is REQUIRED to cover reconstruction

Second-the survival rate might not be affected, but has anyone considered that the RECURRENCE rate is different for those who rid themselves of the breast tissue susceptible to this disease. Yes, it can recurr other places, but the liklihood is much less!

I didn't want it once, and don't want it again!!

In addition, I'd like to share a story about a friend also diagnosed at 27. She was told to have a lumpectomy-even with multiple tumors in one breast. She wanted bilateral and saw 3 surgeons before one agreed to do the bilateral. Turns out there was malignancy present that hadn't been found even with many diagnostic procedures that had been done!!

Young Survival Coalition (www.youngsurvival.org) is a great place for young women facing this disease.

diagnosed at age 27-had bilateral and NO regreats! 5year SURVIVOR!

First-yes, insurance is REQUIRED to cover reconstruction

Second-the survival rate might not be affected, but has anyone considered that the RECURRENCE rate is different for those who rid themselves of the breast tissue susceptible to this disease. Yes, it can recurr other places, but the liklihood is much less!

I didn't want it once, and don't want it again!!

In addition, I'd like to share a story about a friend also diagnosed at 27. She was told to have a lumpectomy-even with multiple tumors in one breast. She wanted bilateral and saw 3 surgeons before one agreed to do the bilateral. Turns out there was malignancy present that hadn't been found even with many diagnostic procedures that had been done!!

Young Survival Coalition (www.youngsurvival.org) is a great place for young women facing this disease.

In August 2007, I was diagnosed with ductal carcinoma in suti of the right breast, stage 0. My surgeon suggested I have a masectomy instead of a lumpectomy, because the tumor was so big and my breasts so small, that a lumpectomy would leave me disfigured. I decided to have a bi-lateral masectomy with implant reconstruction at the same time. All I could think of was "get that tumor out of me" and I wanted to make sure it didn't return in the other healthy breast. Plus I wanted both my new breasts to look alike. When the pathology report came back after the surgery, saying that I had invasive ductal carcinoma stage two A, I was glad they took both breasts. They went back in a month later and took 27 lymph nodes from my right arm, which in turn caused me to have lynmpadema. Later that month the stiches opened in the left breast and the expander was removed, because it had become exposed. I went through all my chemo treatments with one implant and an open hole in my chest. After the chemo I thought for sure it had killed all cancer cells, but to my surprise it jumped to my ovaries and then had a complete hysterectomy. No guarantee... that if you remove your healthy breast, the cancer won't come back somewhere else. I've decided to have tram flap surgery when the hole in my chest closes. I feel the one implant I have, just doesn't feel natural to me. I'm 46 and I have so many battle scars from this cancer journey that I didn't have before.....but I'm still alive. Whether to have one, both or no breasts removed and whether to have reconstruction surgery or not is every individual woman's choice. After all, it's your life your fighting for and no one should stand in your way or comment on your decision.

I was diagnosed with a cancer of the breast at the age of 11. I had a large tumor and underwent a radical mastectomy at that time.

I am now 28 years old and have not undergone any reconstruction. Why??? Because the same barbaric reconstructive techniques that they used when I was 11 are being used now. You scar up the rest of your body to get normal breasts; either your back or abdomen to move tissue up to the breast area.
I have chosen not to get this done and have had a few boyfriends "not really care". Basically, I have a huge scar instead of a breast.
Why is reconstruction necessary? It is not. I chose prom dresses that came up higher and continue to wear clothing that does not show cleavage---I never had the "luxury" of wearing most of the clothes I would love to wear. But at the same time, this experience has taught me that those things don't matter.

What matters is that I am alive and that I can be accepted as a sort of "amputee.

This is all about the patient and what the patient needs to cope and recover. I had very lumpy breasts, my mother took me for my first mammogram when I was 16 because I had several lumps. My cancer formed a lump right on top of one of my old lumps. I had two in the other breast. I chose, and I believe it was my right to choose, to have a bi-lateral mastectomy. I am getting reconstruction, have finished chemo and will soon be starting radiation. I think that the patient has the right to choose just how agressively she wants to fight it so that she can feel some sense of self empowerment, less fear, and hope that she has done every thing that she can to have a high quality of life after it is all said and done. Age 48, stage IIIA, 4 positive nodes. I also work at a hospital, but the best information I got was from other breast cancer survivors. I am covered for reconstruction on my insurance. The family leave act ensured that I would not lose my job over this, although everyone here at work has been wonderful anyway. I have been very blessed.

This is a shoddily written article.

*There is not <i>one</i> breast cancer gene, as your statement "And for women who don't have <i>the</i> gene that predisposes them to breast cancer" implies. There are several genes. And they're finding more every day.

*One reason Christina Applegate chose double mastectomy is that she was positive for the BRCA1 gene; prophylactic bilateral mastectomy is currently RECOMMENDED for women with that gene. It wasn't an idle celebrity whim or because she was rich enough to afford the procedure and the time off; to even remotely imply so is an insult to a brave and wonderful woman.

*Both federal and state legislation (at least in my state, Illinois), require group health plans and health insurers to cover reconstruction. And my insurer, at least, paid for the mastectomy of what my surgeons thought was the unaffected breast with no problem. And I was able to take enough time off work to recover because of the federal Family and Medical leave act. I think this article does a disservice to women by not including or even mentioning these state and federal laws.

*The statistics you cite from the Annals of Surgical Oncology are 8 years old, a comparative eternity in the medical literature.

*I have to wonder if the increase in the rate of prophylactic mastectomies is not so much a matter of a woman's choice as you imply. I think the increase in the rate of funding of mastectomy care and reconstruction, the fact that it is now recommended that women with one of the BRCA mutations strongly consider prophylactic mastectomy, and the continuing improvements in breast reconstruction have a lot to do with the increase.

*Add me to the list of previous commenters who were less concerned with survival than with quality of life, when I got a bilateral mastectomy with immediate reconstruction at the age of 34. My doctors did everything they could to "save" the affected breast, but when they recommended mastectomy I decided to opt for the bilateral. And I'm glad I did; they found the same precancerous cells in the right breast. It was absolutely the right decision for me. It made it possible for my husband and me to go on and have our beautiful son (who will hopefully have a sibling soon), without worrying about recurrence or the need for constant monitoring.

*From what I've heard about recent advances in molecular imaging and the treatment of cancer, the hope (and my hope) is that in 20 years or less, prophylactic mastectomy will be viewed as an almost barbaric, medieval overkill of a treatment. But right now, I know it was the best decision I could have made to preserve the life I wanted, and I don't regret my decision for a second and never will.

I had a bilateral mastactomy 2 years ago this month and have never looked back. Cancer in the left breast and lymph nodes. The right was removed, my choice. I'm 56. No resconstruction for me. I'm still having pain from the surgery and no one knows why. But I'd do it all over again, the same as I did. I met a young married girl (maybe 35 yrs. old) at radiation. She was planning reconstructive surgery. She didn't want it, bt her HUSBAND was MAKING HER! What a self serving jerk is he? I'm happily divorced (20 years now). So my decisions are my own. At a time like that, I was so glad to only have myself to worry about!

This December I'll celebrate 2 years surviving from breast cancer in my left breast. At 55, I opted for a bi-lateral mastectomy, removing my healthy right breast also. For me the decision was a 'no-brainer.' I've known too many women who had either a lumpectomy or a full mastectomy in the cancerous breast only to revisit the ordeal within a few years with re-occuring cancer in the the same or other breast. While I thought about re-constructive surgery, it was such a relief to be rid of the weight and the associated back and shoulder pain of enormous breasts. The was question that my insurance would not cover a later re-construction. Its been nearly two years and I still haven't had the resconstruction.

Initially, I was so aware of the physical difference and certain that everyone one looked at me and knew right away that I had no breasts. I was embarassed and actually felt ashamed. A good friend remined me that I had absolutely no reason to be ashamed, rather I should be proud that I caught the cancer early and was been brave enough to be pro-active in the fight. The best advice for me at the time were her words.

Now, I'm certain I won't go through with the reconstruction surgery. Clearly I don't want to endure yet another surgery. But more than that, I understand reconstruction is for the 'comfort' of others, rather than my own comfort. I'm a proud survivor and now at ease with letting others know too. Then there is the added bonus of not owning a bra, not having back aches or those nasty grooves in my shoulders from straps bearing a heavy load. After all, I'm still me and have my whole live to live

I had a prophelactic bilateral mastectomy 11 years ago. I had had atypical hyperplasia in my right breast and continued to be followed for suspicious looking areas on mammos and ultrasound. Finally, a radiologist took me aside and told me that, even though my doctors had told me they needed to be agressive about biopsying suspicious areas after the atypical cells, they weren't doing it because they were so frequent that I would end up with too much scar tissue from biopsies. He told me quite honestly that the result would be, if I would develop cancer, it would be in advanced stages by the time it was treated, because of the impracticality of doing multiple biopsies. He recommended a prophelactic mastectomy (not talked about much at that time) and I ended up consulting with 7 more surgeons, oncologists and radiologists after this -- all agreed with the radiologists assessment but were afraid to be honest with me because of fear of saying the wrong thing and suits. Finally, I hired a GP friend of mine who phoned each of them and they ALL agreed I was putting my life in jeopardy without the surgery. I had two very young children, ta supportive husband, and two friends who just had breast cancer. This made the decision somewhat easier -- as did the advantage of having time to go through therapy beforehand.

Right decision: Some people thought this was extreme. But, when the biopsy of all the removed breast tissue came back, it turned out to be a Godsend. I had cancer in the tissue of my LEFT breast, not the right one where all my problems APPEARED to be. And, this didn't show up on mammos or ultrasound. I was so, so lucky. Today, after two years of breast cancer, my mother is lying in Hospice dying of breast cancer at age 81 -- never thinking she would have a problem! What is going on here? Why are we putting so many hormones into our food and our environment? Some days I think I know more people who have been touched by breast cancer than those who have not.

Reconstruction: I ended up having a tramflap reconstruction using my rectus muscle. The breasts look fantastic but my stomach bulges since they left no muscle (only mesh) for support. I hate the bulge, but I believe there are other places from which muscle is taken today as well as the stomach if you are doing a bilateral reconstruction. When I woke up I had breasts (minus nipples, and it wasn't nearly as traumatic as having a sudden mastectomy as my mother did. And, I avoided the chemo. All breast cancer survivors I've talked to say, "The mastectomy is nothing -- it's the chemo that is horrible."

INSURANCE: My insurance paid for EVERYTHING. The author of this piece is quite wrong about insurance not paying for reconstruction, and I believe a correction should be published so women are aware that they do have this option.

I know 5 ladies who have been diagnosed with breast cancer on one side... 3 of them had a reoccurence in the other breast years later and none of them had the genetic marker. Don't tell me that it's not beneficial to have both removed. My mother had a double mastectomy this year when two kinds of cancers were found in her left breast. Thank God her doctors told her to have both removed because one of the types of c she had tends to mirror itself in the other breast... all cancers are not the same... let's just get that straight. She had reconstruction done during the same surgery as her mastectomy and her breasts look better than ever.

Also, insurance is REQUIRED to pay for reconstruction of breasts due to mastectomy... where did the author get her information???? My mother paid her little deductible and that was it! I wonder if these doctors would think differently if it was their daughter who had breast cancer.?

I am currently recovering from reconstruction surgery using my own tissue from my abdomen rather than an implant. My Stage IIIC breast cancer was diagnosed a year ago and underwent chemo, radical mastectomy, all lymph nodes removed from both my arm and neck followed by radiation.

My oncologist at the MD Anderson Cancer Center has also been treating my sister for the last 4 1/2 years for the same disease but genetic testing indicated that we were not carrying the breast cancer gene. What we learned from this fine doctor who is a leader in his field is that only those patients who have the genetic marker should have both breasts removed. Based on the very low risk of contracting cancer in the other breast, we decided to have a single mastectomy. We learned that not only having a bilateral mastectomy and reconstruction involves increased surgical risk, but having reconstruction using our own tissue involves multiple surgeries since only one breast can be done at a time and tissue has to taken from both the abdomen and then from our upper buttocks which can take a year to complete.

Since we both have estrogen positive breast cancer, our marching orders are to take our hormone suppressing meds every day and to prevent any and all weight gain as the years go by since estrogen is stored in fat tissue. We are thrilled with our reconstruction results which were discussed on day one of our treatment. Since we were treated at a center dedicated to breast cancer treatment, the option for breast reconstruction is discussed with each and every patient. It is so shameful that each and every breast cancer patient is not provided with the same quality of care that we received.

I am currently recovering from reconstruction surgery using my own tissue from my abdomen rather than an implant. My Stage IIIC breast cancer was diagnosed a year ago and underwent chemo, radical mastectomy, all lymph nodes removed from both my arm and neck followed by radiation.

My oncologist at the MD Anderson Cancer Center has also been treating my sister for the last 4 1/2 years for the same disease but genetic testing indicated that we were not carrying the breast cancer gene. What we learned from this fine doctor who is a leader in his field is that only those patients who have the genetic marker should have both breasts removed. Based on the very low risk of contracting cancer in the other breast, we decided to have a single mastectomy. We learned that not only having a bilateral mastectomy and reconstruction involves increased surgical risk, but having reconstruction using our own tissue involves multiple surgeries since only one breast can be done at a time and tissue has to taken from both the abdomen and then from our upper buttocks which can take a year to complete.

Since we both have estrogen positive breast cancer, our marching orders are to take our hormone suppressing meds every day and to prevent any and all weight gain as the years go by since estrogen is stored in fat tissue. We are thrilled with our reconstruction results which were discussed on day one of our treatment. Since we were treated at a center dedicated to breast cancer treatment, the option for breast reconstruction is discussed with each and every patient. It is so shameful that each and every breast cancer patient is not provided with the same quality of care that we received.

I am currently recovering from reconstruction surgery using my own tissue from my abdomen rather than an implant. My Stage IIIC breast cancer was diagnosed a year ago and underwent chemo, radical mastectomy, all lymph nodes removed from both my arm and neck followed by radiation.

My oncologist at the MD Anderson Cancer Center has also been treating my sister for the last 4 1/2 years for the same disease but genetic testing indicated that we were not carrying the breast cancer gene. What we learned from this fine doctor who is a leader in his field is that only those patients who have the genetic marker should have both breasts removed. Based on the very low risk of contracting cancer in the other breast, we decided to have a single mastectomy. We learned that not only having a bilateral mastectomy and reconstruction involves increased surgical risk, but having reconstruction using our own tissue involves multiple surgeries since only one breast can be done at a time and tissue has to taken from both the abdomen and then from our upper buttocks which can take a year to complete.

Since we both have estrogen positive breast cancer, our marching orders are to take our hormone suppressing meds every day and to prevent any and all weight gain as the years go by since estrogen is stored in fat tissue. We are thrilled with our reconstruction results which were discussed on day one of our treatment. Since we were treated at a center dedicated to breast cancer treatment, the option for breast reconstruction is discussed with each and every patient. It is so shameful that each and every breast cancer patient is not provided with the same quality of care that we received.