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Patient Input Requested – Increasing Mastectomy Rates
Patient Input Requested – Increasing Mastectomy Rates
By: DrAttai
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Dec 29, 2014

On Saturday January 17th, I will be giving a talk at the Southern California Chapter of the American College of Surgeons Annual Meeting – the title of the talk is: Increasing Mastectomy Rates – Science vs. Personal Choice.

There is a tremendous amount of literature documenting the increasing mastectomy rates – the focus of the talk will be patients who opt either for mastectomy when a lumpectomy is recommended, or elect to remove the unaffected breast (contralateral prophylactic mastectomy). This talk will focus on women without a BRCA or other genetic mutation.

As has been my practice for several years, I’d like to include the patient voice, so I’m asking for input from you. I would like to hear about your decision-making process, whether or not your surgeon tried to change your mind, how many opinions you obtained, and whether or not you regret your decision. I think that it is important to share the patient point of view with the scientific community.

No names or other identifying information will be used. If you are uncomfortable for any reason leaving your information here, you may email me at info@DrAttai.com – this email is monitored by me, not my office staff.

Thank you in advance!

 

Comments

Annette Wetzel

Date: 29 Dec, 2014

I was diagnosed with DCIS, stage 0, in my left breast, twenty-five years after my mother was diagnosed with breast cancer in both breasts, she had both breasts removed. I had read many articles about breast cancer over the years. I had about 3 weeks between my diagnosis and meeting with a surgeon and spent much of that time reading as much as I could about my options. Although survival rates were the same (lumpectomy vs mastectomy) I chose to to also have both breasts removed. The anxiety I had experienced each year when I had my annual mammogram was all consuming. The past 6 years I had had to return for more pictures and ultrasounds. I KNEW I would get breast cancer. I actually went to my surgeon and told him what I wanted to do and my reasoning. He did explain that the mastectomy would not improve my survival rate, but respected my decision. I have never regretted my decision! I did have reconstruction (implants, nipples formed, and tattoos) and am quite pleased with the results. Although I do know that I could have a reoccurance, I do not worry about facing breast cancer again.

Alison

Date: 29 Dec, 2014

My mom had breast cancer, and had the same diagnosis as me, however, neither of us had the BRCA gene. When my mom had her operation, she opted to only have one breast removed. In the last year or so, she started finding lumps, they are benign, but it's scary to relive it. Additionally, during reconstruction the doctor who did hers didn't do a great job matching her other breast. So when I was diagnosed, I decided to remove both. One for peace of mind and the other for vanity. My doctor never talked me out of it, I did not receive additional opinions, and I have no regrets.

Cyndi

Date: 29 Dec, 2014

I'm a 38 year old woman who just had a contralateral prophylactic nipple sparing mastectomy with reconstruction in May/Sept 2014. Throughout my treatment, my plan was to have neoadjuvant chemo followed by a lumpectomy, however as I neared the end of chemo I was not entirely comfortable with my decision to have a lumpectomy and so I began exploring other options. The turning point for me was really my pre-surgery imaging day about a month before the end of chemo. I spent more than half a day getting what seemed like dozens of mammogram and ultrasound images of my lumpy, dense breasts taken, read, and retaken. This was uncomfortable, stressful, and time consuming, and was not a process that I wanted to have to go through frequently/regularly for the rest of my life. A good cosmetic result was also high on my priority list -- I wanted my post-cancer breasts to look exactly like my pre-surgery breasts (scars notwithstanding). My affected breast was already a fair bit smaller than the other one, and it was likely a plastic surgeon would need to do a reduction on the other side to ensure things were balanced after a lumpectomy, which would leave both of my breasts smaller than I wanted them. I got opinions from two breast surgeons as well as two plastic surgeons (for reconstruction options depending on my surgery decision). All surgeons gave me as much information as possible and left the ultimate decision up to me, and did not try to sway me one way or another (and both breast surgeons did point out that the statistics do NOT show a higher rate of survivorship for women who have mastectomies). While I know that having my breasts removed does not in any way affect the possibility of a regional or distant recurrence, it makes me more comfortable to know that I no longer have dense, lumpy breast tissue to worry about. I definitely miss my old breasts, but have zero regrets about my surgery decision.

Lorena Mercado

Date: 29 Dec, 2014

I had a bilateral mastectomy but only my left breast was cancerous and I am BRCA negative. I had the best breast surgeon.

Arline

Date: 29 Dec, 2014

I was 36 years old in 1981 when I was diagnosed with breast cancer. It was a small tumor and infiltrating ductal carcinoma. I was small breasted. Lumpectomy surgery was very new. I was so afraid of getting it back and scared of radiation. Age played a big part also because I didn't want to be haunted by another lump over the next 2-30-40 years...I opted for a modified radical mastectomy on bc breast. 9 monthes later had reconstruction (silicone implant shoved in) and a subq. mastectomy on other breast and silicone implant. Over the years I have not regretted my decision even with an implant rupture and a couple of implant replacements. I have actually thought I should have had a simple mastectomy instead of subq. because I still have alittle breast tissue that occasionally bothers me and I run to check it out. Wanting as much risk reduction as possible has been my reason for the mastectomies....in view of my young age.

Elizabeth

Date: 29 Dec, 2014

Hi Dr. Attai, Thank you for soliciting our input! I was diagnosed with low grade stage 1 b invasive ductal carcinoma in May 2012. My surgeon recommended a lumpectomy, which he did. However, the margins were not clear as there was DCIS. He recommended a second lumpectomy, which he did. The margins were still not clear and three additional invasive tumors as well as more DCIS, were discovered. I started doing research on rates on contralateral cancer. Although I am not an oncologist, I am a psychologist and a former university researcher. I used to work in health psychology so I looked at what the big cancer centers like the Anderson Center were recommending. I looked at research on rates of contralateral cancer as well as risk factors included in the Gail Index. I was satisfied that my risk of cancer in my left breast was low and armed with my well annotated research reviews went into my appointment with my beloved breast surgeon. He recommended everything in line with what I had read. I had a right side mastectomy. A single 1 mm focus of DCIS was discovered by the pathologist. I still think that we made the best possible decisions based on the information available at the time. My surgeon explained everything well, was emotionally sensitive, and very knowledgeable. He has since retired from surgery and I hope I never need a surgeon again. He is truly the best physician I have ever had. I know that not everyone has this kind of experience and I wish that they could.

Laura

Date: 29 Dec, 2014

I was dx stage 3a invasive dc in right breast with known axillary lymph node involvement. Following neoadjuvant chemo I had bilateral mastectomy with immediate reconstruction. My mother (bc survivor with single mastectomy no recon) thought i should have both breasts removed. My brother (anesthesiologist) also advised this. Neither my mother nor I have brca gene. I guess I did the bilateral to reduce anxiety re: continued screening, of which my mother has a lot. In hindsight though, the surgery was diffcult, the reconstruction very unpleasant. The implant in the radiated side is still swollen and hard after two years, the implant on unaffected side is misshapen, and, well, in May I had a metastatic recurrence in liver, lungs, and lymph nodes so I did not exactly get any benefit from doing it.

Laura

Date: 29 Dec, 2014

In answer to your question, my surgeon left the choice about unaffected breast to me. She did not push either way. I was not a candidate for lumpectomy.

Amy Wedow

Date: 29 Dec, 2014

I was originally diagnosed with DCIS 6 years ago. I opted for lumpectomy and radiation. Margins were not clean after first lumpectomy so I had another. Radiation was hard. I had three young children and it was a rough go. Radiation damaged my ribs/muscles and caused lymphedema. Four years later, I was diagnosed with stage iv invasive breast cancer. It spread to my skin and breast bone. There were so many tumors, I had chemo first then double mastectomy without reconstruction. If I had it to do over again, I would do the double at first diagnosis. My sister-in-law was recently diagnosed stage II. She had a double with reconstruction and chemo. Her pathology report showed LCIS. If she had just done lumpectomy, the LCIS would have been left behind to grow as it pleased. From my experience, I would never recommend a lumpectomy.

Susan Krauss

Date: 29 Dec, 2014

I opted for bi-lateral mastectomy before learning my breast cancer was triple negative. Two years after surgery, I learned I am BRCA negative. My decision for mastectomy was an emotional one, based on my fears and the desire to be as aggressive as possible. The weeks immediately following the discovery of a tumor, even a small one, are a blur of appointments, information overload, fear and uncertainty, yet from the start, I knew I wanted both breasts removed. My doctors, my breast surgeon and plastic surgeon, informed me the chance of recurrence isn't improved with mastectomy over lumpectomy, and were careful to insist the choice was mine and mine alone. In retrospect, I believe I was most influenced by my parents' unfortunate cancer experiences. Both had lung cancer, inoperable, and their treatments of radiation and chemo proved ineffective against their metastatic cancer. In my mind, removing my breast tumor and all surrounding breast tissue was the most aggressive step I could take; at age 60, I didn't regard my breasts as vital...not like an arm or leg...so take them, please! Upon learning my cancer was triple negative, my decision to have a bi-lateral mastectomy seemed absolutely the correct one. Three years after diagnosis and treatment (surgery, chemo, reconstruction), I have had no second thoughts about my decision. My doctors have been excellent throughout the process, and I am grateful for a breast cancer center just minutes from my home. I experienced no complications during treatment and reconstruction and count myself very lucky.

Jill

Date: 29 Dec, 2014

My BRCA gene was inconclusive but my mother had breast cancer at age 45. In 2013, I had a lumpectomy for pre cancer. One year later I had IDC in same breast. My Oncology surgeon recommended a lumpectomy and told me survival rates were the same with that and mastectomy but that it was my choice. I chose a bilateral mastectomy with reconstruction for two reasons. I didn't feel I could deal with the anxiety every 6 months waiting for test results and I did not want radiation. I had a cousin who had radiation that weakened his heart muscle leading to his death. Since my cancer was on my left side and I'm a senior citizen I didn't want to take a chance with my old heart. I have no regrets and know I made the best decision for me. It's hard to explain to anyone who hasn't been there the horrible anxiety you feel when you're told you have cancer and you're faced with life changing decisions.

Carolyn

Date: 29 Dec, 2014

I was diagnosed with metastatic breast cancer via a biopsy of an enlarged lymph node under my right arm. It was lobular breast cancer. I had over 20 years of mammograms, ultrasounds, and cyst aspirations, but never a lump. Following the breast MRI done in my pre-treatment work-up, a lump developed in my right breast. I was told the lobular breast cancer is all but impossible to diagnose by mammogram. I was expecting a lumpectomy. During chemotherapy, the breast mass appeared to be shrinking. I was one of the patients who had many difficulties during chemo, in fact, they cancelled my last treatment due to the effects from Taxol and Taxotere. My surgery needed to be postponed a month to allow me to recover to be ready for surgery. I decided against the lumpectomy and chose mastectomy on both breasts. It was vanity in a way but I really did not want to risk cancer in the other breast. Following the surgery, my diagnosis changed from stage IIB to IIIC. In addition, LCIS was found in the left breast. I have not chosen to have any reconstruction. I have Lymphedema in my right arm and my chest and torso. I haven't regretted my decision regarding the surgery.

Marcia Todd

Date: 29 Dec, 2014

June 2009 I had a lumpectomy for IDC. A month later, further lumpectomy for clear margins and axillary dissection. Stage 2B, BRCA negative. I was never given a choice for surgery. Statistics were stated and I should have been good after chemo and radiation. Feb 2013, I had a squamous cell carcinoma in the scar tissue of that breast. Very rare, but caused by radiation. Immediate unilateral mastectomy. No time to think about bilateral. When deciding on DIEP reconstruction, I decided to have a unilateral prophylactic mastectomy. Very wise decision since there were atypical cells in that breast. Breast surgeon did not want to remove healthy tissue, but agreed to do it since I had made up my mind. So thankful I followed through with what I thought was the right thing for me!

Jenny Brock

Date: 29 Dec, 2014

I was diagnosed at age 56 with stage 2a grade 2 IDC. Originally I was going to have a lumpectomy but the MRI I had after the biopsy showed a second tumor. My surgeon then recommended a mastectomy. When I met with my plastic surgeon about reconstruction options, he told me that the unaffected breast would have to be lifted and augmented and still might not match. Also, I had very dense breast tissue and many calcifications. I opted to have both breasts removed for a more desirable reconstruction outcome and for peace of mind. Expander/implant/nipple reconstruction went well and I'm very sure that I did the right thing for me. My doctors were very supportive in letting me make my decision. A low Oncotype DX score meant no chemo. Now I'm taking Anastrozole for 10 years.

Mandy Nix

Date: 29 Dec, 2014

I was diagnosed in August 2009, early stage invasive. My surgeon suggested lumpectomy which we did. I did not have clear margins and a second excision was suggested. My tumor was deep on a small breast. My feeling was that I was being sliced away a little at a time. I opted for skin and nipple sparring mastectomy, bilateral with immediate reconstruction. My surgeon had let me know from the beginning that he was conservative in his recommendations. My choices were based on the fact that I was the ninth breast cancer diagnosis in my Mother's line. Including my Mother and my Sister. Two of our family had tested not BRACA positive. Since then I as well have tested not positive for the currently known BRACA mutations. My Oncologist feels we will eventually find additional mutations. Some of my decision was cosmetic. Some was the need to be as proactive as I possibly could to lessen the fear of reoccurrence, the terror of yearly mamograms and to have the extensive surgery while I was as young and healthy as I would ever be. I was 53 at the time of my surgery. I have never regretted the masectomy or the prophylactic masectomy. I am forever grateful that my "Conservative Surgeon" listened to my needs. I am aware that I may have recurrence but I remain literally, comfortable in my own skin.

Susan

Date: 29 Dec, 2014

I am 68 now an I was diagnosed with stage 2 breast cancer July 2012. It started out as doing a lumpectomy until the MRI came back showing 3 tumors. So I had a mastectomy. I did want both taken off at that time but my surgeon talked me out of it. I felt lopsided after that. I was a double D bra size. I ride horses and trotting and loping was very hard. I could not get a bra with a prosthesis to work. I then had a mammogram the following year and it showed my breast to be cystic. So I then opted to have the other one removed. I am so happy I did that. I have not had reconstruction just wear prophesies in a size C cup. If I could go back I would have had both done at the same time. Yes I did check out reconstruction and felt it wasn't for me. I am happy with no breasts.

Elizabeth J.

Date: 29 Dec, 2014

Dr. Attai, Thank you for seeking patient input. I had a mastectomy, but there were no other options or choices for me because I had inflammatory breast cancer. I chose to keep the healthy breast. Because I still had to have radiation, I was not allowed reconstruction. Shortly after finishing treatment (chemo, surgery, radiation), I had a recurrence, but I did go into remission for a while and got DIEP flap reconstruction. Because of a recurrence again and the meds I'm on now, I would be very surprised if I were ever to be allowed surgeries to finish that up and make them match better and get a nipple, but I am thankful to no longer be flat. All my treatment has been through Arizona Cancer Center and the University Medical Center (Arizona). My doctors have all been honest, knowledgeable, and compassionate.

Christine Garrott

Date: 29 Dec, 2014

I was first diagnosed with breast cancer in February of 2013, after finding the lesion myself (I had had a negative mammogram the previous July). Sadly, it turned out to be a Stage 3c Invasive Lobular cancer, with all 19 nodes involved. Although I had no health insurance at the time, I decided to have the other breast removed as well, as ILC has a fairly high rate of recurrence in the opposite breast, and the disease was fairly far advanced at the time of diagnosis. I opted not to have reconstruction, both to save money and to shorten my recovery time from surgery. I've been very satisfied with my prosthetics - I don't wear them every day, but when I do, they work just fine. I completed my entire treatment cycle in November of 2013. Despite aggressive treatment, we discovered metastatic disease to the bone this past March. I am currently stable on a combination of Femara, Faslodex, and Xgeva, and have a very good quality of life at the moment. I am blessed with an excellent care team, and continued to be followed carefully by my surgeon, my medical oncologist, and my radiation oncologist. Despite having developed MBC, I feel they are giving me exemplary care. Thank you for soliciting this information from us - I hope my story will prove to be a benefit to other warriors on the journey.

Christine Garrott

Date: 29 Dec, 2014

I should add that, while my surgeon provided me with all the options available, it was a relatively easy decision to make to have the opposite breast removed, especially since ILC is so insidious in its growth patterns. I did not feel the need to have additional opinions, above and beyond my oncologist having my case reviewed at Tumor Board (that's been done twice now). I have absolutely no regrets as to my treatment decisions to date.

Stacey

Date: 29 Dec, 2014

Hi Dr. Attai, Like some of the previous posters, my decision had a lot to do with family history. My mother was first diagnosed in 1983 at age 49, her sister in 1989. My aunt's diagnosis came very late and she passed away within a year. After a single mastectomy and chemotherapy, my mother was fine for 12 years. I'm unsure whether she had a recurrence or a new primary in the remaining breast, but ultimately, cancer was found in the liver and lungs. She died in 2000. Breast Cancer was all around me since I was 19 years old and never got too far from my mind. In my 40's I started getting mamograms and then ultrasounds every year. Convinced my family history would send me down the same path as my mother and aunt. I was diagnosed in May, 2009. Five days before my 45th birthday with Stage One Invasive Ductal Carcinoma in my right breast. It was very small and an MRI showed no evidence of any other cancer in either breast. At first, I wasn't sure what I would do. I had a lot of friends and family saying be as aggressive as possible-- bilateral mastectomy. The first surgeon I met recommended lumpectomy, even after discussing my family history. I didn't get the sense she was really in favor of mastectomy, much less, prophylatic for the left side. The second surgeon seemed more understanding of the option and recommended genetic testing to guide in the decision. I thought if I was BRCA positive, this would be a clear decision for me, but to my great surprise, I was BRCA negative. With that information, I had some serious thinking to do. After a couple of weeks, understanding research, and odds of survival, even with a bilateral mastectomy, I opted to go with it. I knew then and I still know, it's not a guarantee of anything. As a matter of fact, I still believe a recurrence is likely, regardless of numbers. But, in the end, I just wanted to sleep better at night and for me, that came with removing both breasts. I had worried about breast cancer for more than 25 years, I couldn't go another day without thinking I did everything I possibly could to keep it at bay. Reconstruction surgery was not easy. Living with implants is not easy, but I don't regret my decison at all. Not once, not for an instant. Thank you for asking for the patient's perspective. Stacey

Cynthia Gaines

Date: 29 Dec, 2014

After diagnosis of stage 1 IDC and lots and lots of research, I chose BMX in May 2013. No BRCA. No regrets.

Judy

Date: 29 Dec, 2014

Hello, I was diagnosed with stage 1a lobular bc in 2006 at the age of 43. I had a lumpectomy in my right breast. The surgeon had a hard time getting clean margins and the pathology report showed cells that weren't cancerous, but were not completely normal either. Lymph nodes were all clear. My surgeon gave me many options. They said bilateral mastectomies were an option, but thought my odds of recurrence were the same with or without the mastectomies. I have no history of bc in my family and did not have the BRCA genes. I was tested for the P-53 gene as I did have chondrosarcoma in my fibula 10 years prior. After much soul searching, I decided to have a single mastectomy on the right side about 2 months after the lumpectomy. I was pretty confident I could live with false positive tests and follow up mris for the left breast. I do have dense breast tissue. Turns out, more cancer was found with the right mastectomy. I was not worried about my left breast. I had very small breasts, so I did have reconstruction done on my right breast and implants put in the left to create a symmetrical look. I had 4 rounds of A/C and went on tamoxifen for 5 years. I did not have radiation. At my five year check up we discovered that the cancer had metastasized to my bones. I still do not regret having the single mastectomy. For me, I've learned it's important to gather as much information as I can from my medical team and to listen to my body and trust myself to make the best decision for me.

Amy Byer Shainman

Date: 29 Dec, 2014

Dr. Attai, Please feel free to share any/all parts of my BRCA story. In addition to my decision making process listed on my blogpost here: http://thebrcaresponder.blogspot.com/2014/12/to-remain-breathing.html ... I met with 3 breast surgeons and 3 plastic surgeons prior to making my final decision on my doctors. My final decision was to actually "go with" the first breast surgeon and plastic surgeon. My decision on doctors had to do with MANY factors but mostly: expertise (experience with nipple sparing, skin sparing mastectomy and reconstruction, plus the fact that the BS & PS had a lot of EXPERIENCE working TOGETHER!) combined with bedside manner and LISTENING to me. LISTENING TO ME was huge. (The 2nd breast surgeon I met with actually picked up his cell phone in my appt. and made me feel like I was just a number to him--there was no connection). Both doctors were knowledgeable about BRCA mutations/gene mutations and risk management. The fact that the doctors I chose were very close in proximity to my home was a major bonus, but not the "end all" in my decision making process. More of my story at: http://amybrcastory.eventbrite.com If you have any more questions please let me know. XO Amy

Eileen Gonzalez

Date: 29 Dec, 2014

I was DX 10/12 with HER2NEU+ ER+ PR+, opted for bi lateral nipple sparing surgery. That one surgery ended up being 5 more. I don't regret the decision, I'm healthy and cancer free. I know that I could still have a re occurrence, but I made the decision after much consideration.

Amy Byer Shainman

Date: 29 Dec, 2014

Dr. Attai: Rereading this I see it is for WITHOUT BRCA mutations. My mistake. Not enough coffee today. LOL Amy

DrAttai

Date: 29 Dec, 2014

No problem, Amy! The reason the talk is focusing on non-BRCA positive patients is because in many cases, bilateral mastectomy is the recommended treatment. Thank you for sharing your experience.

jkd

Date: 29 Dec, 2014

I was 38 when dx w/DCIS. It was a very traumatic time, as my husband was away on a yearlong tour of duty when I was dx and couldn't be home with me until after I received the dx. Although I should have gotten more than one opinion, I went with the first to have my right breast removed. This was a complete and total mistake and I now deeply regret it. I was pushed into it by a surgeon who seemed to have no clue the damage it would do to my body. She offered a lumpectomy, but made it seem like the other was the only choice. My husband, not thinking how it would affect me down the road, wanted me to go with the latter. In hindsight, I would have been fine with a lumpectomy. Instead I ended up looking and feeling mutilated. The doctor overdiagnosed me and didn't realize until the surgery that

PAM178

Date: 29 Dec, 2014

Fear and vanity. Simple as that.

Allison

Date: 29 Dec, 2014

In 2005 at age 45 I was diagnosed stage iv DCIS. At diagnosis I had 14 bone tumors and was given approx 3 months. Therefore I was not given a choice of either mastectomy or lumpectomy. After outiving my prognosis in 2012 I elected to have brachythearpy and it was recommended at that time to do either surgery. I decided lump. Because I had seen too many women with lyphodema. I am glad I made that decision. I would have made it sooner given the choice. I believe it is really a physcological decision to just get the cancer out! But a valuable one just the same. Kind Regards Allison Sanders

Marcia Todd

Date: 29 Dec, 2014

Allison, You can get Lymphedema when you have a lumpectomy. It all depends on removing lymph nodes. So avoid blood pressures, blood draws and IVs in that arm. Congrats on your survivorship. You are amazing!!

Lisa Ellis

Date: 29 Dec, 2014

I had multi-centric cancer in my right breast so a mastectomy was my only surgical option. I opted to have a bilateral mastectomy because I didn't want to have reconstructive surgery and I wanted to be symmetrical. I had very large breasts and just couldn't imagine being extremely lopsided.

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