Decisions, decisions...

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YoMo
YoMo Member Posts: 6
edited March 2014 in Breast Cancer #1
Recently I had a lumpectomy showing positive margines, but my 'nodes are clean. The team of doctors has left the decision to me as to whether to have another lumpectomy, and MAYBE get the rest of the cancer ("50/50 chance of getting it all"), followed by radiation, or to have a mastectomy. I am curious as to what other women in this situation chose for a course of treatment. After whatever kind of surgery I have, I will do some kind of estrogen suppressing therapy. The chemo option is still up in the air because the doctors still don't know how large the tumor is, since they took only some - I still have the rest. My decision has to be made in the next couple of weeks, but I would love to hear what others decided to do and why.

Comments

  • tlmac
    tlmac Member Posts: 272 Member
    #2
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    Hi YoMo, I'm confused. When diagnosed a year ago, it was an ultrasound that determined the size of my mass, not the surgery. I can't imagine why your medical team doesn't know the size of yours. Positive margins just means they didn't take enough healthy breast tissue surrounding the tumor. This is determined by pathology once the mass is removed. If margins are clear, they're confident they didn't leave behind any stray cancer cells. In any case, cleaning up the margins followed by radiation statistically has the same survival percentage as a mastectomy. Perhaps there are other medical considerations that prompted they to tell you there was only 50/50 chance of "getting it all." Make a point of asking them to clarify this or get a second opinion regarding cleaning up the margins vs mastectomy. The need for chemo is based on stage and grade of cancer. I was stage II (2.5cm) and grade III (agressive). I wanted to avoid radiation all together so I chose mastectomy. I also had 4 cycles of AC chemo that ended May 8, 2003. I'm extremely happy with my decision but the majority of my friends encouraged me to reconsider breast conserving lumpectomy. In the end, I had to do what felt right for me. Good luck with your decision.
  • cruf
    cruf Member Posts: 908
    #3
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    Hi! I also had a lumpectomy with positive margins. I was also given the option for the radiation and hope the cancer cells were destroyed or the mastectomy. I had no problem deciding to do the mastectomy and immediate tramflap reconstruction. To me, I wanted to be sure all the cells were gone. Of course, there's never a guarantee but I felt this was the safest thing for me. I am very happy with my decision and if I had to do it all over, I would do it the same way! I am almost 4 years post surgery and so far, so good. The decision is purely yours. Good luck. If you have anymore questions, feel free to e-mail me here. Take care. HUGS!! Cathy
  • billandpatty
    billandpatty Member Posts: 86
    #4
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    YoMo -- I had a lumpectomy with positive margins -- went back in to have more tissue removed and get better margins and lymph node dissection (30 of them, all negative). Had 4 treatments of A/C chemotherapy and 7 weeks of radiation, my tumor was estrogen negative so there aren't additional therapies for me. (My tumor was 2.0+ cm, stage II, and very aggressive) I completed the treatments 3 1/2 years ago and have had good check-ups since. It's a personal decision about what way to go on this. As you can see, everyone has their own preference. The first consideration is to get rid of the cancer and then try to prevent it from coming back. Getting a second opinion can help you with giving some insight as to why they decide on different types of treatment for different situations. You have to make your decision and go with it -- and not second-guess yourself for the rest of your life, that can drive you crazy! It's not easy to make these decisions, there are risks and side effects to all this treatment, but it gives us all a chance at life. Be good to yourself and take care.
  • inkblot
    inkblot Member Posts: 698 Member
    #5
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    Hi YoMo:

    Like tlmac, I'm also confused. Wondering why the surgeon only removed "some" of your tumor? Also, if your margins were "pathologically" determined not to be within ideal limits, then where's the remainder of your path report? It should be available to you and clearly indicate size, grade, hormone status, Her2/neu status, etc.. All such info is important to you in making any further treatment decisions.

    I'm not understanding what you mean when you say that when the surgeon goes in to clear your margins, he/she "may" get the remainder of the tumor as well?

    I'd advise your getting a 2nd opinion straight away and take your original mammo films, together with your path report, surgery report and any other info with you, for review/discussion.

    You can only make an informed decision, re any future surgery and/or adjuvant treatment, after
    you know exactly what you're dealing with and what your options may be. Keep in mind that a 2nd surgery to clear the margins is common with lumpectomies.

    You deserve the time to discuss all this thoroughly with your doctor before making any decisions. Your personal preference matters greatly re mastectomy or not, but your path details are essential, as is understanding what's going on that your tumor wasn't all removed at the first surgery and why it may not all be removed at a 2nd surgery.

    Wishing you all the best and please let us know what you decide.

    Love,light and laughter,
    Ink
  • YoMo
    YoMo Member Posts: 6
    #6
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    tlmac said:

    Hi YoMo, I'm confused. When diagnosed a year ago, it was an ultrasound that determined the size of my mass, not the surgery. I can't imagine why your medical team doesn't know the size of yours. Positive margins just means they didn't take enough healthy breast tissue surrounding the tumor. This is determined by pathology once the mass is removed. If margins are clear, they're confident they didn't leave behind any stray cancer cells. In any case, cleaning up the margins followed by radiation statistically has the same survival percentage as a mastectomy. Perhaps there are other medical considerations that prompted they to tell you there was only 50/50 chance of "getting it all." Make a point of asking them to clarify this or get a second opinion regarding cleaning up the margins vs mastectomy. The need for chemo is based on stage and grade of cancer. I was stage II (2.5cm) and grade III (agressive). I wanted to avoid radiation all together so I chose mastectomy. I also had 4 cycles of AC chemo that ended May 8, 2003. I'm extremely happy with my decision but the majority of my friends encouraged me to reconsider breast conserving lumpectomy. In the end, I had to do what felt right for me. Good luck with your decision.

    Thank you. My ultrasound & mamograms showed a small mass (2.3 cm), but not much else is showing up unless it's found in samples of me in the lab. This cancer, unlike myself, is leggy. First report says that it's in the ducts, some lobular cancer and small granules in the surrounding fatty tissue. Getting a second opinion on options this week. Had a chance to speak to a local woman who went through something similar. She had 3 lumpectomies and 3 times she was told she had dirty margines, and finally opted for TRAM-flap. I don't think I want to be kicked in the gut with that news twice more, so I'm leaning toward mastectomy with some type of reconstruction. It's kind of funny - friends and family seem split 50/50 on the conservation issue, but they don't have to live with the results. I have every intention of LIVING with the results. You're right - you have to do what feels right for you. I appreciate your input!
  • YoMo
    YoMo Member Posts: 6
    #7
    Options
    cruf said:

    Hi! I also had a lumpectomy with positive margins. I was also given the option for the radiation and hope the cancer cells were destroyed or the mastectomy. I had no problem deciding to do the mastectomy and immediate tramflap reconstruction. To me, I wanted to be sure all the cells were gone. Of course, there's never a guarantee but I felt this was the safest thing for me. I am very happy with my decision and if I had to do it all over, I would do it the same way! I am almost 4 years post surgery and so far, so good. The decision is purely yours. Good luck. If you have anymore questions, feel free to e-mail me here. Take care. HUGS!! Cathy

    Thank you - I'm still on the fence, but leaning in that direction.
  • YoMo
    YoMo Member Posts: 6
    #8
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    billandpatty said:

    YoMo -- I had a lumpectomy with positive margins -- went back in to have more tissue removed and get better margins and lymph node dissection (30 of them, all negative). Had 4 treatments of A/C chemotherapy and 7 weeks of radiation, my tumor was estrogen negative so there aren't additional therapies for me. (My tumor was 2.0+ cm, stage II, and very aggressive) I completed the treatments 3 1/2 years ago and have had good check-ups since. It's a personal decision about what way to go on this. As you can see, everyone has their own preference. The first consideration is to get rid of the cancer and then try to prevent it from coming back. Getting a second opinion can help you with giving some insight as to why they decide on different types of treatment for different situations. You have to make your decision and go with it -- and not second-guess yourself for the rest of your life, that can drive you crazy! It's not easy to make these decisions, there are risks and side effects to all this treatment, but it gives us all a chance at life. Be good to yourself and take care.

    Thank you. Been continuing to gather information - spoke to a local woman with similar issues, and am waiting for results of a second opinion. Still on the fence but leaning towards mastectomy & reconstruction. Could sway the other way when all the data is in. I fully intend to make myself crazy for the rest of my life with things that are more fun than second guessing this decision! We should all be good to ourselves.
  • YoMo
    YoMo Member Posts: 6
    #9
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    inkblot said:

    Hi YoMo:

    Like tlmac, I'm also confused. Wondering why the surgeon only removed "some" of your tumor? Also, if your margins were "pathologically" determined not to be within ideal limits, then where's the remainder of your path report? It should be available to you and clearly indicate size, grade, hormone status, Her2/neu status, etc.. All such info is important to you in making any further treatment decisions.

    I'm not understanding what you mean when you say that when the surgeon goes in to clear your margins, he/she "may" get the remainder of the tumor as well?

    I'd advise your getting a 2nd opinion straight away and take your original mammo films, together with your path report, surgery report and any other info with you, for review/discussion.

    You can only make an informed decision, re any future surgery and/or adjuvant treatment, after
    you know exactly what you're dealing with and what your options may be. Keep in mind that a 2nd surgery to clear the margins is common with lumpectomies.

    You deserve the time to discuss all this thoroughly with your doctor before making any decisions. Your personal preference matters greatly re mastectomy or not, but your path details are essential, as is understanding what's going on that your tumor wasn't all removed at the first surgery and why it may not all be removed at a 2nd surgery.

    Wishing you all the best and please let us know what you decide.

    Love,light and laughter,
    Ink

    Thank you - getting a second opinion this week. The mass that showed up on the mamogram and ultrasound is gone, but what's left doesn't show up on film - too small, but apparently numerous. Ducts, lobes and surrounding fatty tissue all showed small, granular cancer formations, and it's estrogen positive. Have been doing more research, and I'm getting closer to a decision.
  • radioav8r
    radioav8r Member Posts: 5
    #10
    Options
    The best advice I can give is to take the most agressive form of treatment possible so it reduces the chance of ever dealing with this again. A breast is not an indicator of your womanhood, and can be replaced. Get that cancer out of you. I took the agressive approach and do not have regrets, even though I am an unmarried 35 year old gal. A friend of mine tried to save the breast and took a year of heavy chemo and radiation when a mastectomy and much lower rads would have made life much easier for her. She wishes she would have made the latter treatment option. Its a tough decision, and my prayers are with you. Stay strong!!!!
  • YoMo
    YoMo Member Posts: 6
    #11
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    radioav8r said:

    The best advice I can give is to take the most agressive form of treatment possible so it reduces the chance of ever dealing with this again. A breast is not an indicator of your womanhood, and can be replaced. Get that cancer out of you. I took the agressive approach and do not have regrets, even though I am an unmarried 35 year old gal. A friend of mine tried to save the breast and took a year of heavy chemo and radiation when a mastectomy and much lower rads would have made life much easier for her. She wishes she would have made the latter treatment option. Its a tough decision, and my prayers are with you. Stay strong!!!!

    Thanks - there are so many options to choose from. Still on the fence, but listing toward an agressive approach. My mother didn't have all these options when she went through this 23 years ago, and watching her recovery was not pretty. She has a prosthesis now - reconstruction options were considerably less then than they are now - and her hair came back better than before she lost it. Thick and silky. At first there is so much information thrown at you, your head is spinning. The information is still coming in thick and fast, but it makes more sense now. I hope you're staying well.
  • shemiya
    shemiya Member Posts: 17
    #12
    Options
    Hi'
    I went through the same thing in july of 2003. I was told I had a very small cancer and could have a lumpecomy and radiation. I had the first lumpectomy and several small spots were in the margins. I had a second lumpectomy and the report came back loaded with pre-cancer cells . My surgeon then recommended mastectomy. I had that done in August and had 6 chemo treatments. I finished Dec.23. I had no nodes, skin or blood vessels involved. The chemo was extra insurance because my cancer was er and pr neg.and overexpression of her2. All we can do is put our trust in the Lord and pray that he will take care of us.
    Betty

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