Has anyone gotten a Second Opinion on Pathology Slides after surgery for DCIS?

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lauren08
lauren08 Member Posts: 29
edited March 2014 in Breast Cancer #1
Had my surgery for DCIS on 2/20,went back to work 10 days later.
Pathology report said I have multi focal spots,high grade & close margins. Surgeon told me we will discuss what is next & decide whether or not he must go back in.
I got the written copy of the report & tried to make sense of it but SO CONFUSED!!!

My appt is 8 days away on 3/17. A friend suggested to make a list of questions to ask Dr when I see him which I will do. I am thinking of also bringing up the subject of a Second Opinion on my pathology slides. I still have to call my insurance company to see if they would cover it.Would like to hear from anyone with a similar situation.Thanks.

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  • cruf
    cruf Member Posts: 908
    #2
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    DCIS
    Hi Lauren! I had pretty much the same pathology report as you except my margins weren't clear. I was given the choice to have radiation and hope they got all the cells or to have a mastectomy and immediate Tram Flap reconstruction and know they got everything. For me, the best thing was to just get rid of everything. I trusted my surgeon (he's world known)and never thought to question him. I never looked back and questioned why I did it that way. I'm happy with my results. I still worry that I may get BC again but in my other breast. I'm now 8 years out .Good luck in whatever you decide to do. Keep in touch. HUGS!! Cathy
  • mimivac
    mimivac Member Posts: 2,143 Member
    #3
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    Second opinion
    Lauren,

    I think it is always prudent to get a second opinion. Pathology slides can be read differently. When I got my second opinion I asked my oncologist for a recommendation. She was very helpful and supportive. Second (and third) opinions are the norm in these cases and will do a lot for your peace of mind.

    Mimi
  • seof
    seof Member Posts: 819 Member
    #4
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    I didn't
    I didn't get a second opinion on mine because I was pretty certain of what the results of all the tests would be before I got them, but MANY people do. I would definitely ask your Dr. about it. Any Dr. "worth his salt" should not be at all bothered by such a question, and should be able to refer you to someone. Getting a second opinion just means that you want to be a well-informed patient.

    Take care of yourself, seof
  • lauren08
    lauren08 Member Posts: 29
    #5
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    Thanks, Don't have an oncologist yet
    Thanks girls. I was wondering why I didn't get sent to an oncologist yet since my diagnosis 12/30 but my coworker who recommended my surgeon said she was not referred to an oncologist until after she was done with surgery. She is being treated for LCIS. Unlike me she has a family history of breast cancer so she is on Tamoxifen for 5yrs.

    It seems like alot of people had an oncologist from the beginning, don't know if its because mine is Non-Invasive DCIS & I just had my surgery 2wks ago.
    Another reason may be is because my Surgeon specializes in breast & is also a cancer & oncology surgeon. I guess this will come up at my appt next wk & if it doesn't it's definitely a question I will be asking him.
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    #6
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    lauren08 said:

    Thanks, Don't have an oncologist yet
    Thanks girls. I was wondering why I didn't get sent to an oncologist yet since my diagnosis 12/30 but my coworker who recommended my surgeon said she was not referred to an oncologist until after she was done with surgery. She is being treated for LCIS. Unlike me she has a family history of breast cancer so she is on Tamoxifen for 5yrs.

    It seems like alot of people had an oncologist from the beginning, don't know if its because mine is Non-Invasive DCIS & I just had my surgery 2wks ago.
    Another reason may be is because my Surgeon specializes in breast & is also a cancer & oncology surgeon. I guess this will come up at my appt next wk & if it doesn't it's definitely a question I will be asking him.

    me neither

    I had DCIS, surgery on 1/23/09. I did not have an oncologist until after the surgery but I was referred for radiation, to a radiation oncologist, and for tamoxifen, to an oncologist. My surgeon is a breast specialist. I was OK with this but had I wanted a second opinion, I would have gotten one without a qualm. And I suspect the surgeon would have had no problem with it.

    Maureen
  • survivor51
    survivor51 Member Posts: 276
    #7
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    No Regrets
    I had a bilateral mastectomy because I knew I did not want to go through this again. I had a biopsy and given the choice of either a lumpectomy or mastectomy. I was not sure and they did an MRI on both breast. My right showed some activity but only the normal clumps of stuff in my left. I knew I would always wonder if it would hit the other foot so I decided to do both. With doing both, I did not have radiation because they took everything and nothing there to radiate. I did have 4 sessions of chemo. They were certain that my right side was fine but after talking to several people, I found that it is easier to have reconstruction matching with both done, with radiation, there is damage to the skin. Well, they were surprised when the path report came back, one side was Invasive Ductal Carcinoma A typical Hyperplasia and the other breast had ductal carcinoma insitu. I we ERpoisitve and PRpositive. I took a blend of taxotere and cytoxan mix for 4 sessions. They did take the muscle from my back and I can't be more pleased. They feel and look almost identical to my original set. My husband even states that if he didn't know better, he would not know I had the bilateral from the feel. The look is also great and just keep getting better. But you will hear pros and cons about all. Look at past message boards responses, those that had lumpectomies, those with mastectomies, with and with reconstruction...but the bottom line is you will need to decide 2nd, 3rd, or what opinion to make your own personal decission. The www.mayoclinic.com as well as this site is great resource. Take care, Angela
  • Marcia527
    Marcia527 Member Posts: 2,729
    #8
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    lauren08 said:

    Thanks, Don't have an oncologist yet
    Thanks girls. I was wondering why I didn't get sent to an oncologist yet since my diagnosis 12/30 but my coworker who recommended my surgeon said she was not referred to an oncologist until after she was done with surgery. She is being treated for LCIS. Unlike me she has a family history of breast cancer so she is on Tamoxifen for 5yrs.

    It seems like alot of people had an oncologist from the beginning, don't know if its because mine is Non-Invasive DCIS & I just had my surgery 2wks ago.
    Another reason may be is because my Surgeon specializes in breast & is also a cancer & oncology surgeon. I guess this will come up at my appt next wk & if it doesn't it's definitely a question I will be asking him.

    breast specialist
    My surgeon was a breast specialist also. He referred me to the oncologist before surgery only because I had to have 4 cycles of chemo before surgery. The surgeon is the one that mapped out my whole treatment. He was my second opinion. He had to redo the biopsies.

    I am adding that I did not have DCIS. My tumors were 6cm, 3cm, and another smaller one.
  • lauren08
    lauren08 Member Posts: 29
    #9
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    EveningStar2 said:

    me neither

    I had DCIS, surgery on 1/23/09. I did not have an oncologist until after the surgery but I was referred for radiation, to a radiation oncologist, and for tamoxifen, to an oncologist. My surgeon is a breast specialist. I was OK with this but had I wanted a second opinion, I would have gotten one without a qualm. And I suspect the surgeon would have had no problem with it.

    Maureen

    Thanks Maureen
    Are you undergoing your radiation now? If so how is it going? Did you have any side effects? Did you start the tamoxifen also?
    If I had to have Radiation, since I'm not married I will have to continue to work full time so I don't lose my health insurance. The thought of that scares me!
    I'm trying not to think about it til my appt but can't help to wonder what the surgeon is going to suggest since he said he can't be sure he got it all. I can't remember exactly how he worded it but it was something like "We'll decide whether to go back in"
    What's hard is my appt next wk is about a month since my surgery & I have a false sense of being done then next wk it will be all back on the front line again.
    As of right now I am ok with the scar it's not bad at all & I say I could live with this but then I think oh my God...it's NOT over, I may need another surgery or radiation & what will I be left with then?
  • survivor51
    survivor51 Member Posts: 276
    #10
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    lauren08 said:

    Thanks Maureen
    Are you undergoing your radiation now? If so how is it going? Did you have any side effects? Did you start the tamoxifen also?
    If I had to have Radiation, since I'm not married I will have to continue to work full time so I don't lose my health insurance. The thought of that scares me!
    I'm trying not to think about it til my appt but can't help to wonder what the surgeon is going to suggest since he said he can't be sure he got it all. I can't remember exactly how he worded it but it was something like "We'll decide whether to go back in"
    What's hard is my appt next wk is about a month since my surgery & I have a false sense of being done then next wk it will be all back on the front line again.
    As of right now I am ok with the scar it's not bad at all & I say I could live with this but then I think oh my God...it's NOT over, I may need another surgery or radiation & what will I be left with then?

    radiation
    A friend of mine did the radiation and worked right through it. She arranged to have the treatments at the end of the day and just made sure that when she was home, she rested. She said she got tired but other wise felt pretty good. If you have some coworkers or friends, I'm sure they are like "what can I do?" On the days of radiation, you might ask them to do a meal....keep it simple and not an army of food. Be sure to drink lots of water. She did not miss a day but radiation hits people different. I pray that yours will go well. Angela
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    #11
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    lauren08 said:

    Thanks Maureen
    Are you undergoing your radiation now? If so how is it going? Did you have any side effects? Did you start the tamoxifen also?
    If I had to have Radiation, since I'm not married I will have to continue to work full time so I don't lose my health insurance. The thought of that scares me!
    I'm trying not to think about it til my appt but can't help to wonder what the surgeon is going to suggest since he said he can't be sure he got it all. I can't remember exactly how he worded it but it was something like "We'll decide whether to go back in"
    What's hard is my appt next wk is about a month since my surgery & I have a false sense of being done then next wk it will be all back on the front line again.
    As of right now I am ok with the scar it's not bad at all & I say I could live with this but then I think oh my God...it's NOT over, I may need another surgery or radiation & what will I be left with then?

    treatment

    I'm having radiation right now. I think today was #10 out of 30-38. I'll find out the answer to that wednesday. I'm tired. Some days are fine others I'm really pooped. These is another thread on that. I will be on tamoxifen. I was given the choice of starting now or waiting until after radiation. I opted to wait until after rads so I would know what treatment was causing what side effects.

    All of this is hard on all of us and some of the worst part is not knowing. You have to take it day by day, step by step when all you want is to have this damn process over! However the universe doesn't work that way. Remember that your sisters in pink are here and we really do understand.

    Maureen
  • Jeanne D
    Jeanne D Member Posts: 1,867
    #12
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    EveningStar2 said:

    treatment

    I'm having radiation right now. I think today was #10 out of 30-38. I'll find out the answer to that wednesday. I'm tired. Some days are fine others I'm really pooped. These is another thread on that. I will be on tamoxifen. I was given the choice of starting now or waiting until after radiation. I opted to wait until after rads so I would know what treatment was causing what side effects.

    All of this is hard on all of us and some of the worst part is not knowing. You have to take it day by day, step by step when all you want is to have this damn process over! However the universe doesn't work that way. Remember that your sisters in pink are here and we really do understand.

    Maureen

    I was told to wait!
    Maureen,

    My oncologist explained to me that I should most certainly wait to take tamoxifen until after I was done with radiation because the tamoxifen might spread any stray cancer cells left when it goes after them and you do NOT want that. The radiation is concentrated on just the area they have you planned for and you don't want anything moving the cancer cells, if there are any, around. You might want to question your doctor inre to what you wrote about taking tamoxifen and radiation at the same time. My oncologist said tamoxifen is like pacman..it chases the cancer cells around and eats them.
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    #13
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    Jeanne D said:

    I was told to wait!
    Maureen,

    My oncologist explained to me that I should most certainly wait to take tamoxifen until after I was done with radiation because the tamoxifen might spread any stray cancer cells left when it goes after them and you do NOT want that. The radiation is concentrated on just the area they have you planned for and you don't want anything moving the cancer cells, if there are any, around. You might want to question your doctor inre to what you wrote about taking tamoxifen and radiation at the same time. My oncologist said tamoxifen is like pacman..it chases the cancer cells around and eats them.

    Huh
    Thats interesting because that is not the way tamoxifen works to my understanding. But I'm not taking it until after radiation is done--10 more treatments!

    Maureen
  • Jeanne D
    Jeanne D Member Posts: 1,867
    #14
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    EveningStar2 said:

    Huh
    Thats interesting because that is not the way tamoxifen works to my understanding. But I'm not taking it until after radiation is done--10 more treatments!

    Maureen

    Maureen...
    Where did you get your information on tamoxifen? It would be dangerous to take it while you are doing radiation. Ask any doctor and/or just read about it on the internet. I am glad you are waiting until you are done with radiation, as, I am too. Good luck!
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    #15
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    Jeanne D said:

    Maureen...
    Where did you get your information on tamoxifen? It would be dangerous to take it while you are doing radiation. Ask any doctor and/or just read about it on the internet. I am glad you are waiting until you are done with radiation, as, I am too. Good luck!

    my
    Medical oncologist is the one who gave me the choice. If you go to http://www.cancer.gov/cancertopics/factsheet/therapy/tamoxifen
    you will see that tamoxifen binds to the estrogen receptors. This should have no conflict with radiation.

    Maureen
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    #16
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    Hi Lauren
    If a doctor gets offended because you want a second opinion, I wouldn't want that doctor. It is your body, your life, do anything and everything to help yourself and to make you feel more at ease with your choices. take care

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