• I am considering a lumpectomy but may consider a mastectomy as I want no radiation: anyone been there

    Asked by Doberwomyn on Monday, December 3, 2012

    I am considering a lumpectomy but may consider a mastectomy as I want no radiation: anyone been there

    25 Answers from the Community

    25 answers
    • mcgheere's Avatar
      mcgheere

      I had an appointment with radiology today, and was told that even if I have a mastectomy it will not guarantee that I will not need radiation after. It still depends on the "margins" that they end up with. Not sure that this helps.....

      almost 5 years ago
    • Nancebeth's Avatar
      Nancebeth

      I decided on a mastectomy (bilateral) because I didn't want to worry about it for the rest of my (hopefully long) life. I had Oncotype DX testing of my tumor and needed chemo but I did not need radiation.
      I write all about my decision making process on my blog
      nancebeth.blogspot.com

      almost 5 years ago
    • leepenn's Avatar
      leepenn

      i'm similar to nb - i also did bilateral because i didn't think i could handle the asymmetry of one breast. i had bumpy boobies to begin with (fibrocystic) and they were dense... my onc team was very supportive of my decision to go with the bilateral mastectomy. i did not have to do radiation - good margins and tumor size below the threshold size that calls for rads no matter what.

      honestly, i like being flat. i miss my nipples, but i like being flat.

      so, if you choose mastectomy, are you considering bilateral? are you considering reconstruction? i wish this were an easy decision to make, but it's not.

      for me, i had chemo and then surgery... so i had all chemo to think about what i wanted. i never waivered from the bilateral mastectomy.

      i hope that helps.

      almost 5 years ago
    • gwendolyn's Avatar
      gwendolyn

      What made up my mind was a conversation with the surgeon about how much tissue he'd be taking. The lumpectomy was going to involve substantial tissue removal anyway so I went with the mastectomy. The surgeon thought he could get clean margins either way and I knew I was having radiation either way. Not sure if this relates to your situation but no one else has mentioned the extent of the lumpectomy yet so I thought I would.

      almost 5 years ago
    • karen1956's Avatar
      karen1956

      I had bilat (one side prophy and it turned out to be pre-cancerous), chemo and rads (due to so much lymph node involvement). Because of so much cancer in the BC side, a lymphectomy was not an option for me.....

      almost 5 years ago
    • nancyjac's Avatar
      nancyjac

      I've been there for all of them. I've had a lumpectomy, a bilateral mastectomy with plastic surgery to cover the wound, and radiation, twice! Whatever you decide, don't tie it to radiation. Firstly, radiation by comparison to surgery and/or chemotherapy is pretty easy. Secondly, don't automatically assume that a mastectomy instead of a lumpectomy means you will or won't need radiation.

      almost 5 years ago
    • JennyMiller's Avatar
      JennyMiller

      I chose to have a bi-lateral mastectomy. I wanted to be aggressive against this evil enemy. Also I did not want to go through surgery a second time. Since then, I had heard of a lady who made a last minute decision to go with a bi-lateral -- and her pathology report revealed cancer in the other breast. Of course, this would not be a common thing but it sure did confirm my decision. No one wants chemo or radiation. However, I considered them to be strong weapons in my battle and I wanted to do everything in my power to beat this enemy! In fact, when I finished treatment, I felt like I was laying my weapons down and I was a little nervous. Staying positive and taking Arimidex are my weapons at present. Each person has to make the decision that is best for them and I wish you luck. Keep us updated.

      almost 5 years ago
    • PinkD's Avatar
      PinkD

      My understanding from the beginning was that I was only going to have a lumpectomy after chemo and then all of a sudden the doctor was talking about mastectomy, even though there was every indication that the chemo had done it's thing. That scared me worse than radiation! We talked it over and decided that the lumpectomy was all that was needed. I would have had radiation in either case. Anyway, the point I want to make is that radiation was the easiest part of treatment--by far. I had minimal side effects--just a small burn on my shoulder--and it was quick and easy to do while living a normal life, unlike chemo or even recovering from surgery.

      almost 5 years ago
    • Mel's Avatar
      Mel

      I also had a lumptectomy and ended up doing a bilateral mastectomy. Was hoping I could end up not doing chemo or radiation. No such luck I ended up doing the chemo. due to being BRCA1 postitive and Triple Negative, I felt since they got the cancer and I did chemo. that there was no specific spot and was just for preventative measures I chose not to do radiation.

      almost 5 years ago
    • lynn1950's Avatar
      lynn1950

      I never asked if having a bilateral mastectomy would change my treatment plan. I was encouraged to have a lumpectomy, but like Jenny, I wanted to be proactive. I am glad I had a bilateral mastectomy. I have not had reconstruction (yet), and I never have to wear a prosthetic or deal with any unevenness. I am all for bilateral symmetry.

      In the end I had surgery, then chemo, then radiation. From the perspective of before the surgery, it all looked looming and scary and awful. But looking back, I have no regrets. You just have to live with what the moment brings.

      almost 5 years ago
    • busymom0413's Avatar
      busymom0413

      I chose to have a bilateral for several reasons. I had immediate tissue expanders. I had a younger sister and cousin that had breast cancer years ago. I wanted them both to look alike. My sister and cousin regretted not doing bilateral. I did not want radiation either. I knew there was a chance after mastectomy and knew I would possibly have chemo. I had already had surgery for the biopsy and taken the lump but no clear margins. I did not need radiation and my OncoDX score was low so no chemo. I was negative for BRCA. I have had no regrets. I take Arimidex. Best of luck to you on your decision. I hope to have nipples in a few months.

      almost 5 years ago
    • Kelli's Avatar
      Kelli

      I chose bilateral mastecomy over 2 lumpectomies, I had cancer in both breasts. I did not want to sit and wait and worry the rest of my life to see if the cancer had come back. My margins were big, 6 inches. But i did not have to have any further treatment. It all depends on your personal choice. My Mom and Aunt both had breast cancer and I had always said that if I get it, I want mastecomy. That was my personal choice. To me my breasts were just flesh. Some people have strong feelings about their breasts, I know my Mom and Aunt both chose lumpectomies. Talk it out with your family or a counselor.

      almost 5 years ago
    • nurse1980's Avatar
      nurse1980

      I had a lumpectomy and after healing,I had 33 radiation treatments.I was told that chemo wasn't an option when all of the factors and criteria were weighed.My tumor was very small(3 mm) but it was triple negative.If the tumor pathology had not revealed triple negative,my radiation was going to be of lesser amounts and shorter duration.Drat the cursed triple negative! I was node negative with clean margins and brca was negative.Now I worry like everyone else if this aggressive triple negative will reappear.We live our lives and make the best decisions we can as our own advocates.

      almost 5 years ago
    • DorothyV's Avatar
      DorothyV

      I had a mastectomy and still had chemo and radiation. Check with your doctors to see what they recommend , and why. God bless:)

      almost 5 years ago
    • RachaelC@StF's Avatar
      RachaelC@StF Community Outreach Coordinator 317-528-7794

      Hi Doberwomyn, I can't specifically speak from experience like all these other lovely ladies did, but I did find an article on breastcancer.org that you might find helpful. You've probably already thought of these questions, but it might help to see them written out. The website is:
      http://www.breastcancer.org/treatment/surgery/mast_vs_lump?gclid=CNSEw9mFgbQCFelDMgod4RsAhQ
      Good luck with your decision and keep us posted!

      almost 5 years ago
    • Heather's Avatar
      Heather

      I started with the lumpectomy but the surgeon didn't get it all (which I was afraid of) and when I went in for the double mastectomy it had spread....don't want to scare you but do what ever you can to get that cancer out of your body!!!!! I finished chemo and will start radiation soon... Hang in there. Just do what is best for you and what will get that cancer out!!! Good luck!

      almost 5 years ago
    • SandiD's Avatar
      SandiD

      I am sorry you must make such a difficult decision. For me, breast cancer was my 2nd cancer. I chose a Lumpectomy because it seemed less invasive. A Mastectomy can have a recurrence too! Because of previous cancer & a high Onco Dx Score, I had 12 rounds of chemo & 33 radiation treatments for Stage I cancer. The surgery healed very quickly & I am now 3 years out from diagnoses & show No Evidence of Disease. Ask you surgeon & oncologist what they would do or suggest their wives do. I wish you the best on this journey. Remember there are a lot of us survivors out here!

      almost 5 years ago
    • Diana60's Avatar
      Diana60

      I opted for internal radiation right after the lumpectomy. I didn't want to go through the 5 to 7 weeks of radiation because I am a red head and have very sensitive skin. surgery was only 3 weeks ago so I am praying for long term good. My DCIS was only 1.2cm in size and Dr. Edney thought this was the best option since it was so small.

      almost 5 years ago
    • Diana60's Avatar
      Diana60

      I opted for internal radiation right after the lumpectomy. I didn't want to go through the 5 to 7 weeks of radiation because I am a red head and have very sensitive skin. surgery was only 3 weeks ago so I am praying for long term good. My DCIS was only 1.2cm in size and Dr. Edney thought this was the best option since it was so small.

      almost 5 years ago
    • liebemutter's Avatar
      liebemutter

      Yes Doberwomyn, I am 67 and have gone thru lumpectomy in May 2012 and then Mastectomy in Sept. 2012, thereafter chief surgeon who operated on me told me I am "cancer-free". I have had no pain, fever, neuropathy all the while, Only the toes have all been messed up, I have had no vomiting and have gained 17 since end of chemo. I did not have radiation because when I visited the radiation doctor, he said that I did not need it. So I would still like to know the difference between "cancer-free" and "cancer in remission"! Anyone would like to do me the favor? Best wishes, Liebemutter

      almost 5 years ago
    • Ydnar2xer's Avatar
      Ydnar2xer

      Don't understand your extreme reluctance to rads. I had lumpectomy and 37x rads the first time I had breast cancer in 2003. Everything went fine; no burning. I had had breast reduction previously and wanted breast preservation if at all possible. This time, being diagnosed in August, I knew mastectomy was only choice--for my "bad side"--but I chose bilateral to be done with it! Good luck with your decision; it was my experience that radiation wasn't that big of a deal, honestly.

      almost 5 years ago
    • JenniferC's Avatar
      JenniferC

      I had two lumpectomy's within one month this past winter; if I had realized initially how much tissue they would be removing when all was said and done, I would have gone with a mastectomy to start with. I ended up having a double mastectomy, (w/ reconstruction), anyway because I wanted to hopefully not have any radiation, (which I don't have to--yay!), and I wanted to reduce my chances of the cancer coming back in either breast---just didn't want to worry about it for the rest of my life. I'm sure I will still worry some, but I am hoping that with time that will subside. Not sure this helps, when you are "in the thick of it" it can be hard to make these decisions...

      almost 5 years ago
    • Sherber's Avatar
      Sherber

      I was very confusted about this too. I also didn't want rad. but like others said if margins are ify, might have to have it. Talk to a radiation therapist and plastic surgeon. They are really helpful in clearing information to help you make a decision.

      almost 5 years ago
    • Nomadicme's Avatar
      Nomadicme

      Many many many studies show that overall survival is the same whether you have a lumpectomy or a mastectomy. I HAD to have a mastectomy and was very disappointed to hear that, as I had read breast conservation surgery was the way things were (I had bad tissue spread out all over, and it was more than 70% of my breast). I wish I had your choice.
      The other thing to consider is that, as nice as reconstructions are, they will never be like the real thing. Even if you get a huge lump taken out of your breast, having an implant will fix that very nicely. Breast reconstruction messes with your latissimus dorsi, so you'll either have scars in your back or indentations (I had the scarless, but I have indentations). I also have bulges nder my armpits from where the piece of lat muscle was brought around. Plus the process is not fun. You're looking at the very leat two big surgeries. There are drains that you have on for weeks, worrying about tissue going necrotic (which can happen for a variety of reasons, including your mastectomy surgeon being too aggressive). if you have necrotic tisue (I barely dodged tht bullet), thn the cosmetic outcome of your reconstruction is seriously compromsed. Then you have to deal with the weekly expansions, and the expander implant is hard and uncomfortable. Bottom line, if you don't have to have a mastectomy, don't do it.
      On the other hand, if you test positive for BRCA1, and/or have triple negative tumor then you may want to reconsider the lumpectomy.
      Even though I was told my other breast had no issues, I moved head with a double mastectomy. The reason for my choice was that I didn't want to go through the entire reconstruction thing twice (they were talking diep reconstruction for the one breast, which can only be done once). Totally unexpectedly, it turned out my right breast had multiple foci of incipient DCIS, but who knows if after the chemo and treatments I've been through that would have been an issue? At the time of surgery they only suspected DCIS based on my biopsy, but it turned out to be invasive, with the largest tumor 1.2cm and triple positive. Now I've sne read that Her2 positive cancers are more likely to result in tumors in the other breast. But it's not these local tumors that kill us, is the chance of a few rogue cells making it out of the breast tissue and establishing a colony (mets).
      Realize that you don't have perfect information, but that lumpectomy is as successful as mastectomy, and that in terms of quality of life and cosmetic outcome, you're better off not dealing with a Mx. You're not any braver and/or fighting any harder if you cut off your breasts. Follow medical advice, it's based on (unfortunately) the experience with millions of bc patients.

      almost 5 years ago
    • Nomadicme's Avatar
      Nomadicme

      Many many many studies show that overall survival is the same whether you have a lumpectomy or a mastectomy. I HAD to have a mastectomy and was very disappointed to hear that, as I had read breast conservation surgery was the way things were (I had bad tissue spread out all over, and it was more than 70% of my breast). I wish I had your choice.
      The other thing to consider is that, as nice as reconstructions are, they will never be like the real thing. Even if you get a huge lump taken out of your breast, having an implant will fix that very nicely. Breast reconstruction messes with your latissimus dorsi, so you'll either have scars in your back or indentations (I had the scarless, but I have indentations). I also have bulges nder my armpits from where the piece of lat muscle was brought around. Plus the process is not fun. You're looking at the very leat two big surgeries. There are drains that you have on for weeks, worrying about tissue going necrotic (which can happen for a variety of reasons, including your mastectomy surgeon being too aggressive). if you have necrotic tisue (I barely dodged tht bullet), thn the cosmetic outcome of your reconstruction is seriously compromsed. Then you have to deal with the weekly expansions, and the expander implant is hard and uncomfortable. Bottom line, if you don't have to have a mastectomy, don't do it.
      On the other hand, if you test positive for BRCA1, and/or have triple negative tumor then you may want to reconsider the lumpectomy.
      Even though I was told my other breast had no issues, I moved head with a double mastectomy. The reason for my choice was that I didn't want to go through the entire reconstruction thing twice (they were talking diep reconstruction for the one breast, which can only be done once). Totally unexpectedly, it turned out my right breast had multiple foci of incipient DCIS, but who knows if after the chemo and treatments I've been through that would have been an issue? At the time of surgery they only suspected DCIS based on my biopsy, but it turned out to be invasive, with the largest tumor 1.2cm and triple positive. Now I've sne read that Her2 positive cancers are more likely to result in tumors in the other breast. But it's not these local tumors that kill us, is the chance of a few rogue cells making it out of the breast tissue and establishing a colony (mets).
      Realize that you don't have perfect information, but that lumpectomy is as successful as mastectomy, and that in terms of quality of life and cosmetic outcome, you're better off not dealing with a Mx. You're not any braver and/or fighting any harder if you cut off your breasts. Follow medical advice, it's based on (unfortunately) the experience with millions of bc patients.

      almost 5 years ago

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