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A few months after I had my right breast removed, and a month after completing chemotherapy, a large painful cyst made itself known in my left breast. As I laid on the table and watched the images on the ultrasound screen, I thought the same thing I thought when I had the first diagnosis: "I don't have time for this shite."
I asked my oncologist, my surgeon, and my reconstructionist the same question, "Why should I hang onto the left one?" After weighing all their answers and picturing myself having annual mammograms and jumping through diagnostic hoops every time another cyst appeared in the left breast, I bid it a fond farewell.
I have only one regret: that I didn't simply have them both off right off the bat. Why didn't I? Because nobody even raised the subject. As a result I had two additional surgeries with all the attendant hassles of drains, etc.
I will say the same thing I have told my sister, nieces, and friends: if you are contemplating a mastectomy, give serious consideration to a double. It has nothing to do with fear, and everything to do with practicality.
I am 43 yrs & have a diagnosis of invasive ductal carcinoma in my left breast. It is a HER-2 positive cancer, not hormonal. This is typically a more aggressive cancer and came on me quickly between yearly mamograms. My grandmother had a mastectomy w/no reccurrence, others in family have died of various types of cancers. Father's side of family all have died young of some type of cancer. I tested neg for BRCA1 & 2.
I am in the process of deciding between a mastectomy or a double. My gut tells me that the double is right for me. I have 3 cancer survivors that are family friends that had to have multiple surgeries because they didn't go with the double. Dr. is relunctant to do a dbl on me. My family supports whatever my decision. I am a bit of a hypochondriac I will admit. My anxiety (as has been with most in this situation) has been VERY difficult for me to manage. I am taking medication but find myself sleepless and with panic attacks. I just don't know if mentally keeping the other breast will ever emotionally feel right for me. If I will ever be able manage the anxiety that will go with Keeping my right breast. I am interested in hearing from both sides. So thank you to anyone who shares their experience. DLB
Hi there,
I totally understand your predicament. I was diagnosed at 44 with DCIS in my left breast, though mine was not invasive (yet), and I, too, had to make the decision of whether to have a single mastectomy or a double. My mother had had breast cancer (also in her early 40s, also caught early), and I was negative for the BRCA genes. From the moment of my diagnosis when it was clear that I had to have one mastectomy (two areas of DCIS made lumpectomy/radiation not an option) I felt certain that I would have the double -- to make reconstruction easier, and mostly for piece of mind.
You can debate the statistics all you want -- look around the site for some excellent fact-filled posts by P.J. Hamel on this exact topic -- but at the end of the day it is your decision and your decision only. After all the numbers, and the fractions of numbers, and all the probabilities and possibilities -- after trying to parse out family history information and genetic testing results and diagnosis information -- it all comes down to what you -- you -- feel is the best decision for you. There usually are no absolute answers -- doctors and researchers disagree on almost all of these questions -- so the only answer that is right is the one that is best for you. That makes you feel the safest and most comfortable.
I posted a piece here a few months ago about how no matter what decision we make when faced with breast cancer, we are seen as failures. If we opt for lumpectomies instead of mastectomies, we run the risk of being seen as shallow and unwilling to do "whatever it takes" to fight the disease. If we have mastectomies instead of lumpectomies, we run the risk of being seen as overzealous. But the big one is if we choose double mastectomies when we only really need a single - well, then, that's the craziest one of all. Except that it's not crazy. It's a legitimate option and you should feel free to choose it.
I chose it, and I never regretted it. I especially didn't regret it when I was lying in bed recuperating from my double/TRAM flap reconstruction and my breast surgeon called with the final pathology report: DCIS had been found in my right breast as well. The one I "didn't have to have removed." The one which had escaped detection in a mammogram and an MRI. Who knows when it would have been found.
If it makes you feel any better, I would definitely and absolutely have a double mastectomy. I think you are right to be leaning in that direction and I hope you will follow your gut and ignore the comments -- even though they might be well-meaning.
Please feel free to write back and thanks for writing.
Laura Zigman
I am 44 yrs w/ a 13 yrs daughter, I was diagnosed with Inflammatory Breast Cancer in my left breast in March 2007. I requested my surgeon do a dble masectomy in 8/07 when I was schedule for my masectomy. She refused, told be she would do it later on down the road if I still wanted to remove it. In February, 2008 during my follow up mammogram on the right side the circus started again, there is something there, we are not sure, we just want to be cautious. Extra veiws, ultrasound, breast MRI, and then its turns out to be nothing. I opted to have the right breast removed this past June followed by dble tram flap reconstruction. I do not regret my decision. I am a realist, I know that the cancer can return in some other part of my body. But I also know that I could not spend the rest of my life in a state of panic every time I had to go for mammograms on my remaining breast. I also know that after chemo, surgery and radition, I will do what ever it takes to minimize my chances of reoccurance. My mantra has been " I don't have time for this" through out my journey and will continue to be. Good luck to you and God bless
I am 44, single, never married and with one neice. I have a different situation in many ways. I probably---well it's pretty much a sure thing that I will never have a birth child of my own. Having that choice taken from you in a moments test results is one thing...versus a choice of adoption.
***I am glad you fought for what your gut told you was the right thing to do. I fought for my double mastectomy. I fought my doctor in a room with my sister, x-ray tec's, PA's, RN's. It was a debate and I was very decisive about what I wanted. My gut told me this from the minute I was told that my biopsy was positive for cancer.
The cancer was in my left breast 10 o'clock, very close to the chest wall, 2+ cm (stage 2-3), HER2+. I had chemo first. I really believed in my gut that the double mastectomy was the way to go for me. I was firm with this.
After the surgery, the pathology results showed that I had pre-cancer in the other quadrants of my left breast. I had nothing in my right breast. If I had NOT trusted "my gut" I would have had a lumpectomy as recommended by my doctors. Who knows if they would have gotten all the margins.
Regardless, I may--or may not have had to have that left breast removed---when---a ticking time-bomb in my mind. I don't think that my doctors were wrong in their recommendation. I have looked at the medical guidelines...they were in total alignment. At 43 the medical guidelines may lean heavier toward the side that a younger patient can't part with her breast (for her life).
I know this sounds harsh. It is only MY opinion and my decision was confusing. I made the best decision for myself! I have absolutely no regrets! I do not question this decision in any way. -------I pray for those who have to make these decisions. Do what is right for youl Listen to your heart, your gut.....don't discount your intuition!
Thank you Laura!
I am going into the hospital in December to have a double mastectomy and a tram flap reconstruction. I had cancer two years ago in my left breast, a lumpectomy and radiation. Even on Tamoxifen I am getting more and more "suspicious" lumps in both breasts. Too much time has already been spent worrying about these breasts - they are my enemies. I appreciate your candor in your article and feel a little braver having known you went through it too.
Trying to get some answers. This seems to be a good place. I have been reading some of the posts. I had ductal carcinoma in 2003. Having a lumpectomy and radiation. Was told the cancer would not be back. Well, come 2009 now HER 2 postive invacive. Now scheduled for a double mastectomy, they could only remove the right one with the cancer. I had a issue of bleeding and taking too long to remove the breast. Having 4 other surgeries on my left breast, I have now decided to remove the left breast. Healing and chemo went well. A year of herceptin treatment and a year to think about it. I am now hearing from my doctors "well, the chance of getting breast cancer in my left breast is 2 or 3 out of 100" and it would now be a personnel decision to remove the left breast. After having 4 surgeries already on the left breast and the 2 cancers that occuried in my right breast WHAT WOULD YOU DO? I don't understand the turn around on the doctors decision on the necessity to remove the left one. I need some medical reasoning for this change of mind. Is it really a personnel want and peace of mind or really going to help ward off cancer reoccuring in the left breast. Please Help !
Kate in Alabama
Kate, you don't say what the four surgeries on your left breast were for. Were they biopsies, cyst removal, lumpectomy...? Breast cancer from your right breast can't recur in your left; anything in your left breast would be a new cancer. Maybe that's what the doctors mean, that you have a 2%-3% chance of having breast cancer in that breast... but even that doesn't really make sense.
A mastectomy would cut your risk of breast cancer in the left breast by about 90%, since most of your breast tissue would be gone. However, it wouldn't reduce your risk of dying from breast cancer - which, after your Herceptin and all the rest of your treatment, is probably pretty low anyway... Sounds like you need another discussion with your main oncologist. Get him/her to give you specific figures for your chance of cancer in your left breast - either new, or recurrence from a previous cancer in your left breast. Then take that information, make your decision, and don't look back - no second guessing, OK? Good luck - PJH
The issues that were in my left breast was a lump (cyst) and the other 3 were my ducts were filling up with blood and causing terrible pain , which the breast seems to be always in.
I just don't know of what has changed from 2009 when it was the recommendation of all , surgeon and oncologist to remove both to cut the risks of reaccurance. Now it seems like its not so important and putting the chances at 2 or 3 in 100. I am going to be 60 in July and I don't want to be facing this again in another 5years as what happened with my first cancer in 2003 to 2009. I just need some clear medical information on what is recommended if I was to go in today for the same cancer.
For the best, clearest, most up-to-date diagnosis and treatment information, see if you can get a second opinion at a Comprehensive Cancer Center. Most states have them; they're the top cancer hospitals in the country, as designated by the government. That would be what I'd do... PJH
I am 37yrs old & just had a bilateral masectomy on Oct 9th. I have an 8 yr old & 6 yr old son. There is absolutely no family history of breast, prostate or colon cancer. My brac1&2 test came back neg for mutation. Yet, I am stage 1.
Once I got diagnosed, I saw my breasts as damaged goods & no longer a part of me. It was time to cut my losses and move on with my life. It is not just a fear that it will come "back" in my left breast because you are right, it can't "come back" if it was never there to begin with. The reason for a bilateral masectomy is because there is a risk & with anything else in life you play the odds.
I don't feel it is helpful to women by saying that a bilateral masectomy is unnecessary. There is nothing wrong with removing one's breasts. I feel it is sad that there are too many people making women think that they are just about their breasts. Yes, I was a nice C cup before kids & after they were deflated but I loved them. They were my favorite body part. I looked good & I showed what I got.
But that changed when the cancer took over my right breast. Then why would I want to keep my left, because at this point in time there is nothing wrong? Well, "they" is actually an "it". And I would rather look in the mirror and see 2 of the same then 2 different things.
Women should be told about the facts & the risks involved without making them feel less of a woman. By saying that it is unnecessary is doing just that. It is an individual choice. It is not radical to have a bilateral masectomy. I see it a preventive medicine. I see it as moving on with life & not having to get an MRI & mammo every 6months for the next 2yrs or however long one's doctor wants one to go.
These people that have the opinion that a bilatereal masectomy is unnecessary, are they of the same opinion that a first mammogram is not necessary until 40? I feel women are being robbed of their lives because doctors are not giving the order at a very much younger age when there are more and more younger women being diagnosed with breast cancer.
So, please don't tell women that a bilateral is unnecesary & uncalled for. Just give the odds and tell women there is no right and no wrong. No one knows what will happen to the breast without it but the true question is, "would you want to go through this again"?
Luckily, this is a free society and we can all make our own decisions about our own bodies. No way would I take off a perfectly good breast, not showing any signs of cancer. And it's not because I have any feelings about being "less" of a woman. Removing a breast is aggressive surgery; it can leave you (as it's left me) with permanent nerve and shoulder damage. I thank God I chose to have only one, as the mastectomy side is still uncomfortable, 8 years later. And I just don't fear cancer that much, I really don't.
I was trying to present the facts - the fact is, a bilateral mastectomy doesn't lower your risk of dying of breast cancer. That's a fact, backed by data. It DOES lower your risk of breast cancer in the breast; not your risk of metastasis. I'd hoped I was presenting women with the facts, so tht they could make a decision based on them, not on pure fear.
As I said, to each his own - I'm very glad you did what was good for you, and hope every woman feels entitled to make that choice - what her heart tells her to do, not what society (or her family or spouse) expects of her.
Hope you do well with any continuing treatment. Thanks for weighing in here- PJH
I'm 31 and was diagnosed 6 months ago 12/09 (30yrs old) Stage 1, grade 2- IDC- BRAC 1&2 negative, no nodes involved, ER+, PR+, HER2 neg.
I found a lump only in my left breast- thought about all the options and opted for a bilateral mastectomy...why? The reason is quite simple- I joined a wonderful support group and maybe about half of the ladies chose a Double, while others (even far worst conditions than I) chose Lumpectomies; all those who chose a lumpectomy now have gone back at least once, if not more than twice because they felt something- now you know what that means...ANOTHER biopsy and another hellish anticipated week to find out if its cancer. In some cases woman who have chose lumpectomies are pin cushions because now everything found, cancerous or not will be inspected- waiting on a biopsy is pretty freakin' scarey. Also, if you have a lumpectomy, you must go through radiation- IF a reoccurance happens in that same breast- you're only option now is to remove it, since they cannot radiate the same breast twice. Also, you dont know how much of your tissue they need to remove until the doctor goes in, so more times than none, they are taking a fair amount tissue- possibly leading to disfiguration. Within our group, woman who opted to only removed 1 breast, are now having reoccurence in the other breast, which now means yet another surgery, more anasthesia and a lot of healing.
So, that is why I chose a double...I am fully aware that I may have a change of distant reoccurance, but I have the comfort of knowing that for now, I dont have to worry about any more biopsies and false alarms.
Quick story: a MAN I know found a lump, he had it removed, under went his radiation and then was diagnosed with skin cancer because of the radiation.
Thanks for your time :)
Thanks for sharing here, Adi. I'd have the lumpectomy first, then mastectomy if I needed it - which is exactly what I did. Had a lumpectomy, they couldn't get clear margins, then had a mastectomy. But didn't do the double, and 9 years later, things seem to be going fine. Having a double definitely reduces your risk of recurrence; but it doesn't increase your survival rate, oddly enough. To each his own, eh? PJH
I remember the moment when I had to decide, and I did think, "why don't they just take both?"
I was 34, and just thought I would do whatever it takes to stay alive as long as possible. But the docs and surgeons told me that I wouldn't better my chances of long life. And if I did happen to have a recurrence, or cancer in my other breast, that treatments in the next 20 years will probably be better.
And I know that I shouldn't worry about recurrence or being sick for years, but I hate the idea of having a life filed with surgeries for the next 20 years. I thought for one, I felt fortunate (or unfortunate) to have the choice. Some women do not get to make that choice--mastectomy or lumpectomy. But then, if you don't have the choice, you don't have to wonder if you made the right one.
I had a lumpectomy and a second margin surgery. I look at my breasts now and wonder if it is a matter of time before it comes back. I take my tamoxifen every day. It has only been two months of a five year treatment. It is now like my "daily little cancer fighter". I hope I don't have to discover the new procedures in the next 20 years. I really hope that. But I read about women who had smaller tumors, and more aggressive chemo that I had, and still get cancer again--or ovarian or cervical---and I just think, "wow. I am now in this other enchilada". While my friends are turning 35 and worrying about the economy...I think about whether or not I made the right decision keeping my breasts...and if I didn't, I only have myself to blame.
I think for those women who made this really hard choice, the key is to never ever look back...I try to remember that I have a great prognosis, so I made the best decision for myself. There is just no knowing. And that's what we all really want.
If the cancer does come back, there is still no one to blame. Even if you had done the double mastectomy, there would have been a tiny bit of breast tissue that the surgeon couldn't get, that would have made it possible for a recurrence. As you say the key is never, ever second guess yourself. It takes a while to truly believe that you will stay well, but you will get there.
Who is PJ Hamel and what makes her an "expert"? Until she has walked in the shoes of a woman facing cancer, she knows nothing. I went through this type of thinking when I had an emergency c-section 20 years ago. My next ob.'s were women and they convinced me that " every woman could have a vaginal delivery". Know what happened? My second, full term baby girl died of meconium aspiration while they waited for the pitocin and other drugs to dilate me! When they finally did a section one day later, my baby's lungs were full of amniotic fluid and stool. The rest of my children were delivered by c-section, lived and are perfect. I am not less of a woman because I " couldn't push out a baby!" Now, I have had the lumpectomies to "save" my breast. I have been told to get a mammogram every six months---even though there is a disclaimer on the forms which states that "dense breast tissue can hide some cancers." I wanted to be rid of the breast tissue after ductal lavage showed papillary fronds in the fluid. Still I was told to " just have central ducal excision." So today, I am scheduled for another biopsy because "abnormal growths" and calcifications are present in both breasts which were there 6 months ago. The radiologist ( a woman) told me she never, ever sees these mammograms get better! We discussed subcutaneous mascetomies. Who are the damn breasts for anyway? I am an intelligent woman with a professional life and 5 healthy children! You talk about how the cancer could spread to other parts of the body; okay, so what. That happens when you leave the breast tissue and those ducts in the body. Take out the breast tissue and put in implants if you wants a breast look. Worries about anesthesia? Yeah, again, the same mentality that told woman to go for natural vaginal births because of the risks of anesthesia, blah blah blah. Anesthesia is safe if you are in the right place with the right doctors. We are talking about breasts, not limbs or organs. WOMEN, PLEASE DO WHAT YOU FEEL IS BEST FOR YOU! DO NOT LET ANYONE MAKE THAT CHOICE FOR YOU OR TRY TO INFLUENCE YOU. IT IS YOUR BODY!
Kathleen, we're singing the same song here - women need to make their own choices about their body. Whatever YOU decide is best for YOU is what should happen; only when you make a decision with which you're entirely comfortable are you able to live with it long-term. I'm not trying to influence anyone; just concerned that women might not have the whole picture about their surgery choices, and what each might mean to risk of recurrence and/or chances for survival.
FYI, I've been diagnosed with breast cancer, and have had three surgeries, radiation, chemo, pneumonia that nearly killed me, lymphedema, and long-term hormone therapy. Those are my creds- PJH
It's good to ask about the credentials of the people who write what you read on the Internet. Currently there are two patient experts writing for the HealthCentral Breast Cancer site PJ and me (Phyllis Johnson). If you read an old sharepost, you may see other columns written by other patient experts. What we have in common is having been diagnosed with breast cancer and being well-read lay people who do our best to keep up with breast cancer news. Besides being a breast cancer survivor, PJ is a professional writer, and before coming to HealthCentral, she wrote for other publications about her breast cancer experience. She is also part of a breast cancer survivor group.
As a writer, PJ knows how to research the topics she covers for HealthCentral. However, it is always a good idea to keep in mind that we are not doctors and that nothing we say should ever be taken as more authoritative than what your own doctor tells you.
You have a very good point that sometimes patients have a better grasp on what's best for their health than a doctor. HealthCentral is all about empowering patients to sort through their options. Most breast cancer patients have choices about what type of surgery they would like to have. Understanding the statistics about how groups of people do on lumpectomy, a single mastectomy, or a double can help a woman make the best decision for herself.
Thanks so much for clarifying our role as expert patients here for those who aren't familiar with the site, Phyllis. And readers, I'd like to reiterate what Phyllis has said: we're not doctors, simply well-read breast cancer survivors who know how to do research, and try our best to answer your questions. For answers to your most critical questions, always be sure to ask your doctor. PJH
I'm new to site. Current age 61. First BC diagnosis Oct 2003...right breast TN, stage 2, grade 3, no lymph nodes. Treatment recommended was lumpectomy, sentinel node , 6 treatments chemo, and 30 radiation. My second BC diagnosis Oct 2010 ( 6 mos after a clear mammogram - I felt lump same area of rt breast), core needle biopsy, TN, stage 2, grade 3. Surgeon recommended modified mastectomy rt breast....I chose also to have simple mastectomy left and NO reconstruction. 4 chemo treatments (taxotere, cytoxphan). Told my BC was not recurrence due to no. of yrs (7) ... that it was a new cancer.
Besides the emotional stress & fear having TNBC a second time brings...my age and not wanting to have multiple surgeries, prolonged pain to make boobs, etc. without any discussion w/me about a skin-preserving procedure, the surgeon made his choice "just in case I changed my mind" , to ignore my decision to be flat chested. This has been very difficult for me to accept...that I now have to deal with more decision what to do. I completed chemo in Feb '11... and besides the lingering nuisances from chemo, now 6 mos after mastectomy, I still have daily discomfort and aching due to seroma. Before I knew what this hard pressure in my chest was, I was actually fearful that surgeon had put expanders in without my knowledge. My right side seroma is worse and had needle aspiration. Dr said doesn't want to risk infection to do more right now...and in answer to my question for a revision surgery, told that risk of infection is increased with the seroma. Amazing to me that he continues to mention how satisfied I'd be with implants!!! My last visit 2 wks ago, I was told seroma could take up to a year to heal. Blessing no major experience with lymphdema in my arm. I opted to try breast prothesis recently since my chest is so lopsided with the swelling ....but the weight is uncomfortable for my 8-9 hr workday. I remind myself this is trivial in the big picture of what I'm fighting...but when your trust is broken it's confusing where to turn for assurance of the medical care. And, health insurance issues enter into this.
My husband is receiving treatment for multiple myeloma and is not being recommended for transplant due COPD and age. I just want to be at my best to continue to work (to have insurance) and be healthy in my role as caregiver...we have a lot ahead of us with his cancer. Nuff....thanks for listening to my vent!
Ellen, I'm so sorry you're having to go through all of this. Any surgeon that would ignore your stated wishes and do what HE wanted to do is irresponsible. While he may say it doesn't make sense to go back and finish the surgery the way you originally wanted it done, perhaps he's wrong. I'd highly suggest you get a second opinion, preferably from a surgeon at a Comprehensive Cancer Center, which are cancer hospitals designated by the government as best in class. You might learn of some options your current surgeon isn't capable of providing.
Beyond that - as you know from your previous cancer experience, time heals. Often it takes much more time than we like, but eventually, day by day, things do get better. I hope your seroma lessens soon, and that you can put this all behind you. I sympathize with your needing to work to keep your family insurance; so many of us are in that same boat, and it puts a lot of pressure on... Thanks for coming here to vent; and PLEASE come back whenever you feel the need. We're here to support you however we can. Take care- PJH
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I had breast cancer on one side. Had a mastectomy, and then removed the other side. (I come from a strong family history.)I felt that why should I wait for it to come back again, so I removed it. I also felt that it was less breast tissue, less chance of getting it again. (I did have a reoccurance on the other side, but IF I did have my breast I wouldn't have found it as I did.) I also had some doubt about it being caught with mammograms, ultrasounds, etc., so I felt it was better to remove it.