• 45 should I have 1 mastectomy or 2??

    Asked by littlelady on Wednesday, April 24, 2013

    45 should I have 1 mastectomy or 2??

    I know that's not the correct term but I'm so frustrated!! I was diagnosed March 28. Tested negative for BRACA 1 & 2. Had MRI that show spot on other breast. Had biopsy on that one and I called the doctor today and she said it was negative . She scheduled surgery w plastic surgeon may 10 to do mastectomy (expanders) on the one with cancer, we can always do the other one later? I don't want to do this one time much less ? Wtf? I'm not sure if I'm just bing Crazy? I feel crazy? Nothing really makes sense to me. Some of it makes sense take care of the cancer then do it later no complications or unnecessary problems or infections? I don't know! that's why I'm here asking for help(which sucks but thanks)!?

    26 Answers from the Community

    26 answers
    • littlelady's Avatar

      Oh yeah I forgot to add that my mother died from breast cancer. I don't know what kind but she died 3 months after diagnosis.

      over 5 years ago
    • Nancebeth's Avatar

      You are the only one who can make this decision. I decided on bilateral mastectomy even before I had the BRCA analysis done. I wanted to do the most aggressive treatment possible. Do as much research as you can and make an informed decision, but make sure it is the right decision for you. It is YOUR cancer and you need to make a decision that YOU feel comfortable with.

      You may want to read blogs by other breast cancer survivors to hear their stories and find out how they came to their decisions.

      over 5 years ago
    • littlelady's Avatar

      The surgeon said for me to think about it but she would still try to talk me out of it? It makes more since to get it gone and move on. Thanks nancebeth! You have been an inspiration to me I look forward to your blog everyday, thanks!

      over 5 years ago
    • bbay65's Avatar

      You are not crazy. Crazy would be to silently accept everything without questioning. A little research is a good idea, but don't let the facts and opinions make your head spin. Writing things out may help clarify options. You've been through a lot in a short time, it will work out. Good luck, my thoughts are w/ you.

      over 5 years ago
    • karen1956's Avatar

      i had a bilat (with TE, then silicone implants)...the two surgeons I interviewed both suggested a bilat....I was good with it as that was one of the questions I had for the surgeons....for me a bilat was the right decision.....
      Listen to you heart....you can always do the single bilat now and at a later time, do a prophy....
      You are not crazy....just trying to sort it all out....

      over 5 years ago
    • SandiD's Avatar

      First, I am so sorry you have to go through this and my heartfelt sympathy on the loss of your mother. I think that loss will sure affect your choice, as it should. You are still so young! For me, I chose a lumpectomy followed by chemo & radiation because it felt less invasive. This was my second cancer. My mom died young of something else and I have no medical history on that side. A double mastectomy is no absolute guarantee of not getting cancer again, but it may up your odds of a long life. What a sucky decision we have to make. One thing I do know, is that YOU have to live with your choice, no one else. Make an educated decision based on the physical as well a emotional aspects of this disease. You will be checked on for the rest of your life, but if one choice helps to relieve your anxiety or worry about recurrence, make THAT choice. Then don't look back, keep taking those baby steps forward. I wish you the very best. Whatever you choose, you will be ok!

      over 5 years ago
    • JennyMiller's Avatar

      I chose to be aggressive against this evil and elusive enemy -- I had the bilateral mastectomy, chemo, radiation and I am now on Arimidex for 5 years. I did not want to go through surgery a second time and I wanted the peace of mind of knowing that I had done all that I could possibly do. I had also heard of another lady who decided on the bilateral and the pathology report indicated problems in her other breast -- so that encouraged my decision. However, everyone is different and you have to make the decision that is best for you -- after all, you are the one that has to live with that decision. I wish you the very best. Please keep us updated.

      over 5 years ago
    • Benge's Avatar

      I'm so sorry you have to go through this also!! Just like you, I lost my mom as well of breast cancer and my brac test came back negative. I am 50 and I was given the same option. After a lot of praying, I finally had peace with my decision of bi lateral mastectomy and reconstruction. I didn't want to go through this twice. Reconstruction was, for me personally, important, because I still have a husband and we still have hopefully a lot of years together. He would have not minded either way though. After the surgery they did find a little more cancer and the healthy breast had some matter that might have turned into cancer one day. I had dense breast tissue, which is hard to see cancer in.
      It's a hard decision!! I said a prayer for you and hope you will find peace with your decision as well!

      over 5 years ago
    • SusanK's Avatar

      I opted for bi-lateral with tissue expanders, even though my tumor was fairly small. It turned out my cancer was triple negative and aggressive, so I have no regrets about my decision. I did it primarily for peace of mind because my parents both died of inoperable lung cancer; I thought if I had a surgical option, plus chemo, that would be the most aggressive way to deal with my cancer. I have a friend who is going through the very thing you are. Her doctor pushed her toward a single mastectomy, followed by chemo and radiation. Now she has to go thru the second mastectomy and has regrets that she didn't do more research prior to the first surgery. If she had, she would have opted to have both breasts removed. From her experience alone, I suggest you talk to a second surgeon for another opinion and by all means, do what you feel is best for you. I know this is a crazy time with all the appointments and the information coming at you--but YOU are not crazy. Take a breath, get that second opinion for your peace of mind, and then you can move forward.

      over 5 years ago
    • Msreje's Avatar

      Dear Littlelady, I know how you feel, it is such a hard and difficult moment. I went thru the same thing and I chose a single mastectomy. I gave it a lot of thought, did a lot of research and consulted 5- yes 5!!!- surgeons and 4 plastic surgeons. The issue to keep in mind is that your mom had cancer. My doctor says that cancer does not spread from one breast to the other. Did the doctor do a PETSCAN? This scan allows us to see if there are any signs of cancer elsewhere in the body. I chose to have the breast reconstructed at the time of the mastectomy. They took fat from my belly. I felt that I could not go thru another procedure. I am not a fan of the OR and if you get me once that is it for me. I am sure that you will make a wise choice for yourself. My prayers are with you. All the best and always reach out to this wonderful community at WhatNext, we are here for you.

      over 5 years ago
    • strongdeb's Avatar

      I had a unilateral Masectomy for Rt invacive ductal cancer HER2 Neg stage IIB Progesterone receptor positive. 12/10/10. with 3 out of 21 lymphnodes positive. Not that I understand what any of that means. Had reconstructive surgery with tissue expander at the same time and then changed the expander out for a implant 5/19/2011. I had chemo 1/24/2011 to 5/2/2011 and radiation 9/5/11 to 8/16/11. I am scheduled for a DEIP Flap reconstruction on July 5 2013. A little scared. sometimes I wish I would have had a bilateral masectomy as I too do not want to have to worry about getting it on the other side.

      over 5 years ago
    • DianaL's Avatar

      Littlelady, I do know what you are feeling! I went through a Lumpectomy on May 14, 2012 and was told everything was fine from the surgical path; however, the final path came back entirely different! I had two sentinel nodes with microscopic cancer cells and there was another cancer sitting behind the first. The surgeon told me a mastectomy was my only choice and just wanted to do the side with cancer. I then went to see my medical oncologist, who took a lot time explaining the path report and telling me that mastectomy is really not a bad thing. My path came as a surprise to all my doctors! His question to me and my husband was did we want to go through this again? What was our peace of mind worth? We walked out with a decision to have the bilateral mastectomy and that was one of the best decisions we ever made. I did not have immediate reconstruction because I still had to go through chemo. I started reconstruction on February 15, 2013 and will have my final implants put in on July 18th (skin needs to stretch more). I never have to have another mammo and no worry about cancer in my other breast.
      It is an individual choice and I pray for you because I really do know how you are feeling--like the rugged has been ripped out from under you! Good luck with you decision and lots of hugs coming your way.

      over 5 years ago
    • littlelady's Avatar

      Thank you all so much! My gut says to do both and get it over with. I don't want to do this again! I'm waiting for Dr to call me back now. I don't want to regret not standing up for myself.

      over 5 years ago
    • Risa's Avatar

      Dear Little Lady,
      I had a bilateral mastectomy and was very happy with the decision. I have very aggressive breast cancer in one breast.All of my doctor's convinced me of having a bilateral. I spoke to a lot of my friends who are BC survivors and they gave me the same advice. I have to admit that much of the advice was on behalf of having better symmetry. My friends with the Lumpectomies felt that they were quite disfigured afterwards especially with those who had not had good enough margins and had to have more surgery. I was thinking of opting out of reconstruction and my husband agreed with me but then my doctor's convinced me that it would be better psychologically for me.
      I was extremely lucky as my plastic surgeon was able to do implants immediately. I woke up with almost the same size breasts as before and remarkably they had reconstructed them to be a bit droopy as they had been because of my age. HA! They were perfect, very natural etc They had used the "gummy bear" type..They were able to do this because I had enough skin. My procedure was also done after my chemo. They did not save the nipples as my cancer is too aggressive. That was my biggest concern was losing my nipples. HA! But I definitely had to be as aggressive as possible with this battle! I have no cancer history in my family. You need to make your own decision but I would definitely suggest the bilateral to ease your mind and to be as aggressive as possible with this "wicked" disease. Your decision is undoubtedly more difficult than mine as you are so young! I have friends your age that had a bilateral not saving the nipples and they are OK with it and love not having to wear bras and not having to worry about "what if it comes back to the opposite breast." Good luck with your decision.

      over 5 years ago
    • Snooks' Avatar
      Snooks (Best Answer!)

      This is such a personal decision and each of us is different, but from my experience I would suggest you have both mastectomies at the same time I had one breast removed and felt like a freak from day one. I think part of my problem was that when I was diagnosed there were so many decisions to make, that I didn't give much thought to the second breast (there was no sign of cancer in the second breast). So, I had my surgery and I immediately regretted not having the second breast removed. Yes, it may take longer to heal from having both breasts removed at the same time, but it will be so much easier than having to go through it a second time. Good Luck and God Bless

      over 5 years ago
    • hikerchick's Avatar

      I had a large active spot on the other breast just like you. First biopsy showed nothing, but they called it discordant which means they didn't extract the tissue they intended to. I may be mistaken, but I think DCIS cancer is branch-like, encased in your milk ducts, not a definable solid mass. You might want to ask your doctor if there's a chance the biopsy collected tissue next to the tissue that could be cancer, and might not have gotten a sample of the activity that showed up on the MRI. That's what happened to me. I chose the double mastectomy and have been glad ever since. I didn't want it to show up in yet another place later.
      For me, I would definitely want both done at the same time. Lots of reasons for that.
      It's great you're asking questions and looking into what's best for YOU.

      over 5 years ago
    • virginiab's Avatar

      Little Lady--
      It's not clear from your posts if youi have seen any doctors besides the one surgeon who did the biopsy. You may want to meet with a medical oncologist before scheduling any surgery. You may want to actually meet and consult with one or more plastic surgeons instead of meeting him or her in pre-op. This is important but it is only moderately urgent. You do not have to either decide or act right away. Take your time. Explore your options. Make sure you understand the entire treatment plan before you start following it.
      We all know that none of the options are terribly appealing, but you can take the time to understand them before you decide. My thoughts are with you!

      over 5 years ago
    • AlizaMLS's Avatar

      Dear littlelady,

      Hi. I'm Aliza, a Breast Cancer patient and the site's unofficial resident Medical Librarian. I offer advice (usually non med [Librarians tend to shy away from Medical questions - our Code of Ethics plus answering them tends to be a bit on the illegal side since it's practicing medicine sans license], but I offer referrals to docs, hospitals, institutions, agencies, websites, books, media, etc. and research when requested or required. I'm also permitted to speak from my own experience and those of my friends and relatives who've had Cancer (there are too many of us).

      Wondering if your doc actually said "we can do the other one later"? or whether that's your own anxiety (no offense intended). That seems like an awfully unprofessional thing for a physician to say. (I used to be married to one, and an office manager for a few, so I have an idea about that, however, anything's possible under the sun!) I'm a mastectomy patient myself.

      You're not crazy. What happened to you is. You just got one of the biggest jolts that life can throw at you out of the blue. Many women have bilateral mastectomies to avoid further worry down the line, but there can always be complications - post-op infections (I had two [not to scare you]) and recurrences. Breast cancer tends to recur in other places generally than the breast such as the liver, bones, lungs, brain, and skin. You just cannot spend (well you can but it's not healthy emotionally) time worrying about a recurrence.

      One of the things that I'd advise you more than what type of mastectomy to have is to contact CancerCare. The Social Workers there are phenomenal! There is no substitute for talking in person with someone professional whose area of expertise is Cancer patients only!! They deal with our highly specialized needs and those of our caregivers as well. Speaking with them will lift a lot of burdens from your shoulders and let you think things out and make decisions more clearly.

      This is a wonderful site and the people here are very supportive and that's not to be underestimated in any way!! But this is a huge decision and deserves some professional, objective assistance in order for you to feel you've made the "right decision". More so than reading whether one of us had a unilateral mastectomy or another had a bilateral.

      I hope you'll consider what I've suggested to you. I thought about getting in touch with CancerCare post-surgery and they've been great! I'd forgotten how helpful they were for me when my Dad died 3 years ago from CLL (chronic lymphocytic leukemia) and I was one of his caregivers.

      Wishing you all the best no matter which decision you make. I'm sure things will turn out well for you!

      If there's anything else I can do for you, please don't hesitate to contact me here of offsite at my email address.
      Warm Wishes,

      over 5 years ago
    • suebo's Avatar

      Have you googled and read up on Mastectomy vs lumpectomy? I don't know all the medical info about your case but the statistics are very close for "cure" rate for both -- maybe you could just do a lumpectomy and that be the end of it!!

      over 5 years ago
    • PrettyToes' Avatar

      When I was diagnosed with BC, I went to a really great surgeon. She did not suggest a bilateral since MRI of other breast was normal. At that time, I was not emotionally ready to have a bilateral (if not necessary), and honestly did not consider it. After all the chemo, and radiation, I realized I did not want to do that again if it recurred in the other breast. (I chose not to do reconstruction.) Meantime, my husband was worrying about recurrence in the remaining breast. When I told him, I wanted to go back for mastectomy of remaining breast, he supported me, as did surgeon and oncologist. Now, looking back, I wish I had done bilateral initially. 2 weeks after finishing radiation, went back for other mastectomy. Sad to lose that breast, but relieved not to worry about recurrence there. Tough choices! Good luck!!

      over 5 years ago
    • Ajfunstuff's Avatar

      I wish I could upload my story, "Boob in a Box" but, in a nutshell, the left DCIS prompted the mastectomy with tissue expander inserted, wearing the prosthesis for a few months, and then the right was just supposed to be a reduction when the reconstruction time came along to get the expander replaced with the silicone implant. I asked from the beginning...is the right one okay? I even went for a second opinion and got the thumb's up. They did one more 3-D mammogram called a digital tomosynthesis for the right breast and they weren't sure about one area. They did a biopsy and the pathology report was fine (they poked in the wrong place) so that yielded a dischordant result. They did a lumpectomy on an unknown area during the reduction/reconstruction and were surprised that I had a second primary breast cancer in the contralateral breast. Very unusual. At that point, I had to go through radiation and because of that, I will always regret that I didn't do a bilateral mastectomy. You have to make the choice that seems right for you and I made a choice based on faulty information. No thumb's up for single mastectormy if I could have a "do over."

      over 5 years ago
    • Nonnie917's Avatar

      If I were in your shoes, and I was, I would go for a double mastectomy. Why take chances of the cancer coming back and possibly being invasive to where you need chemo and radio? That is just my opinion.

      over 5 years ago
    • AlizaMLS's Avatar

      Hi littlelady,

      I'm Aliza, a BC patient, like yourself and the site's unofficial resident Medical Librarian. We (Med Librarians) try to avoid answering med questions because that's considered practicing medicine sans license-it's considered a bit illegal...;)), but I'm permitted to speak from my own experience as a Breast Cancer patient and those of the Cancer patients in my friends and family (we number way too man!!)

      First, in no way, shape, or form, are you crazy! Cancer is crazy!! It shouldn't be in your body! It's an invader. It's now your job to treat yourself as you would your best friend (to get you to detach a little from the situation) and think how you would advise your best friend to proceed.

      I'll tell you my story as an illustration with the understanding that in no way am I trying to influence you that this is the correct path for you to follow. I was diagnosed in August of 2012 by mammography as a Stage I (I was 53 then-I'm 54 now). I'm negative for BRACA. I'm HER-, ER+/PR+. I had a mastectomy of my left breast in December-my decision. I was told by my breast surgeon that I could have had a lumpectomy. For me that might have caused some probs because I'm also a Lupus patient (SLE)-mild, but since lumpectomies are followed in nearly all cases (and at my treating hospital definitely) by radiation 5x/wk for 6 wks, I decided that might not be great for me. The radiation oncologist and my rheumatologist spoke and agreed that I was a good risk for someone with SLE, but I didn't want to take chances. After the mastectomy, my surgeon sent a tissue sample of the tumor off for Oncotype genetic testing. I scored an 8, which is very low (I have a 1 in 8 chance of a recurrence over the next 10 years, which is the same chance of anyone else in the general population of getting breast cancer) and meant that I wouldn't benefit from chemotherapy [I was very lucky to have missed that {I'm the only BC patient I know or have heard of who did or has}]), so the only thing I'm doing vis-a-vis preventing a recurrence is taking Tamoxifen to block Estrogen( this isn't a picnic either, but that's a different email and story). Oh, obviously, I didn't have a bilateral, but I felt comfortable in not doing so. Why? It's tough to put my finger on. I have dense breast tissue. But there were no signs of anything in my other breast and I know I'm being monitored very closely at my treating hospital and if there was a recurrence, it wouldn't be in my other breast (it would be more likely in my brain or my lung). A lump in my other breast would signal either a fibroid cyst (I have fibrocystic breasts) or a completely new cancer (not fun to contemplate, but you have to play the cards you're dealt).

      Doctors (and I know because I used to be married to one) are very relaxed about doing procedures (it's not a lack of compassion; they have to be-they do them all the time, and they have to be somewhat clinically detached or they'd go to pieces). It's easy for your doctor to say she/he can operate on the other breast at a later time. The question is: how will you feel about living with that on a day to day?

      I have a suggestion for you (librarians make lots of suggestions and referrals [that's why I came on the site in my professional capacity as well as being a patient]). I think you should call CancerCare and speak to one of their Social Workers. They're specially trained to deal with the highly specific needs of Cancer patients (and their caregivers as well) and they're great!. It's not like "regular therapy". No one's going to "blame your mother."...;) But they will help ease some of the burdens you're carrying and get you to think about things a bit differently than you are now. You won't feel as panicky after speaking with them.

      I think it's great to read survivors stories and it can be comforting, but when the sun goes down, you're still left to consider what you can cope with, so I hope you'll give those folks at CancerCare a call to let them help you make the best decision for you.

      Wishing you well,

      about 5 years ago
    • Snooks' Avatar

      If I had to do it all over again, I'd have a double mastectomy without question. After my first, I had to be hospitalized three times while goiing through chemo. I felt like a freak every time someone looked at my chest and only saw one breast. After my chemo treatments, I opted t have the second breast removed. I never regretted having it done and I sleep better at night. Good Luck and God Bless

      about 5 years ago
    • seaniebopp's Avatar

      I'm currently in the same situation. I am also 45. I was diagnosed with dcis. my doctor suggested lumpectomy but I am afraid of recurrence. I am trying to base my decision on genetic testing and information about the type of tumor. most important, I have 3 children to live for and if I must lose my breast to live for them so be it. If cancer is coming for me I want to get it first! Stay strong LittleLady! God bless you!

      about 5 years ago
    • baridirects' Avatar

      When I was diagnosed with ILC in my left breast in late February, I sat down with my surgeon and had a long, frank talk about my options. I had found my lesion on self-exam after having had a normal mammogram the previous July, and by the time I had found it, I was already at Stage 3, so I knew I would never again trust a mammogram to detect breast disease. As ILC has a greater tendency to recur in the other breast, and both my surgeon and my oncologist felt that I could significantly reduce my risk for doing so, I chose to have my right breast removed as well. Since I have no health insurance, I made the decision not to have reconstruction done. Fortunately, my surgeon was able to save enough skin on both sides that I can choose to have it done later on if I ever want to. I have to say, though, that I'm very pleased with my prostheses so far - I wear 'em if I feel like it, or simply go without. When I do wear them, from the outside, you would never know I had anything other than natural breasts, even in my swimsuit. I healed pretty quickly from the surgery, and have had no complications.

      I had decided from the get-go that I was going to be as aggressive as possible, and I'm definitely at peace with my decision.

      about 5 years ago

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