No oncology follow up following double mastectomy?

cinnamonsmile
cinnamonsmile Member Posts: 1,187 Member
edited March 2014 in Breast Cancer #1
i was in the chat room and women were telling me that it sounds wrong that i will have no oncology follow up following for a double mastectomy. i had right breast dcis, stage o, grade o, but was widespread in the ducts along with two types of precancerous cells, the left side was dx with a suspicious lump with an mri that turned out to be absent of cacner but dx as PASH.i had clean margins. i dont need chemo nor radiation but the surgeon and onc. are at odds if i need tamoxifen which is a whole other issue i wont discuss ehre.although the ladies admitted they didnt know much about a low grade cancer, are they right in that i should be followed up by an oncologist? does anyone else think this is odd that i was dismissed bu oncology? i am 19 days post surgery and the only one really in charge of my case is my surgeon and she thought it was odd that the oncologist didnt want to see me too.thank you.

Comments

  • mgm42
    mgm42 Member Posts: 491 Member
    #2
    2nd opinion
    You may want to consider a second opinion. Talk to your surgeon and see if she can recommend another oncologist to you. If so, I'd go for the 2nd opinion just to give myself peace of mind. I'm so glad that you were diagnosed with low grade and that your surgery is over. I'm a bit of a skeptic so 2nd opinions always make sense to me. Hugs, Marilynn
  • weazer
    weazer Member Posts: 440
    #3
    Very Odd
    Wow, I would think you would have follow up!
    I would ask for a second opinion, and ask him why?
    Please keep in touch and I hope you will heal with no problems.
    Take care sis Karie
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #4
    weazer said:

    Very Odd
    Wow, I would think you would have follow up!
    I would ask for a second opinion, and ask him why?
    Please keep in touch and I hope you will heal with no problems.
    Take care sis Karie

    Hmmmmm
    Did you at least have an oncology consult? Have you checked the NCCN website or another for what is standard follow up protocol for someone with DCIS and mastectomy? As long as someone is following you and ordering the right tests, you might not need to see an oncologist.

    Question anything you have concerns about and if you're not comfortable with the answers, get a second opinion.

    Suzanne
  • parris
    parris Member Posts: 23
    #5
    2nd opinion
    I had stage 1 bc, no radiation or chemo needed and had a double mastectomy w/reconstruction 6/09. Took tamoxifen but stopped due to side effects. Some doctors see this as being fully cured, but we all know different. I do follow up with my oncologist and I'm having a MRI done as part of my follow up.

    Get a second opinion and be very aggressive with them when it comes to your health.

    God bless
  • Boppy_of_6
    Boppy_of_6 Member Posts: 1,138
    #6
    parris said:

    2nd opinion
    I had stage 1 bc, no radiation or chemo needed and had a double mastectomy w/reconstruction 6/09. Took tamoxifen but stopped due to side effects. Some doctors see this as being fully cured, but we all know different. I do follow up with my oncologist and I'm having a MRI done as part of my follow up.

    Get a second opinion and be very aggressive with them when it comes to your health.

    God bless

    Sounds strange
    I have a friend who will be having a masectomy in a couple of weeks. She has been told she will have no follow up with an Onc. I think it sounds strange that they would not follow up with this. She has IDC unsure of stage yet, has had a node biopsy done and it was clear. She will not have rads or chemo. She is under the impression that they will get all the breast tissue but from what I understand they do not get all of it, most but not all. I am worried becuase she thinks it can't come back. I would rather her get some type of follow up, but right now she does not want to talk about it. I think a 2nd opinion would be a good idea. God Bless
    (((Hugs))) Janice
  • smalldoggroomer
    smalldoggroomer Member Posts: 1,184
    #7
    I do find that very odd. I
    I do find that very odd. I would talk to the surgeon about seeing another oncologist. You do need a follow up. What is wrong with this Dr..
  • carkris
    carkris Member Posts: 4,553 Member
    #8
    smalldoggroomer said:

    I do find that very odd. I
    I do find that very odd. I would talk to the surgeon about seeing another oncologist. You do need a follow up. What is wrong with this Dr..

    If you dont have chemo, I
    If you dont have chemo, I suppose you wouldnt need an oncologist. The surgeon can follow you as far as exams go. and I am not sure you would get blood work so if not you dont have that to order and follow. congrats on your pathology!
  • fauxma
    fauxma Member Posts: 3,577 Member
    #9
    carkris said:

    If you dont have chemo, I
    If you dont have chemo, I suppose you wouldnt need an oncologist. The surgeon can follow you as far as exams go. and I am not sure you would get blood work so if not you dont have that to order and follow. congrats on your pathology!

    I didn't do chemo but I see
    I didn't do chemo but I see an oncologist because I am on arimidex. Not sure what/where my follow ups would be done if I wasn't. But some type of follow up is essential I would think for breast exams, mammograms etc. Just my thoughts. I would get a 2nd opinion and ask how will you be followed.
    Stef
  • skico
    skico Member Posts: 7
    #10
    Similar Situation
    I had DCIS about 10-11 years ago. I did have one consultation with an oncologist just to discuss the possibility of tamoxifen, but that was it. No other follow up with an oncologist was needed or recommended at the time. I did get regular checkups (every 6 months) with a breast surgeon, along with regular mammos and ultrasounds, but that was it. Although I developed IDC more recently in the other breast that had nothing to do with lack of followup with an oncologist. In fact, it's more likely that a new breast cancer is going to be picked up by the radiologist or surgeon - and with a double mastectomy, that's even less of an issue. If one is not receiving any chemo or other drugs, there really is no reason to be seen by an oncologist. I would think regular follow up by your surgeon and regular doctor would be sufficient.
  • cabbott
    cabbott Member Posts: 1,039 Member
    #11
    A few questions
    You may want to talk with a knowledgeable oncologist if you have questions about your cancer. Oncologists can do more than just prescribe chemo or tamoxifen. They can give you odds of how likely you are to have a reoccurance of the same or a different cancerand how to reduce those chances. They can give you an idea of whether a genetic test is likely to be of use or not. Maybe you don't have any questions, but if you do you may want to make an appointment, if possible with a breast oncologist associated with a really good university clinic.
  • CandaceMM
    CandaceMM Member Posts: 68
    #12
    Be proactive
    Hi, I just had a double mast. in July 2010, reconstruction in process. I had no node involvement, no radiation or chemo, yet I have an Onc that I will see every six mos. I am on Tamoxifen. I'm new to this but, after reading this discussion thread for the past month or so... the main thing I have learned is to be proactive when it comes to your healthcare. Second or third opinions are sometimes necessary, but you cannot mess around with this beast!

    My Oncologist is very involved in my labs, diet, scans, overall lifestyle... you name it, he's wanting to discuss it, ad nauseum. So, considering this, I really hope you choose to get a second opinion. Good luck and keep us posted!
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #13
    cabbott said:

    A few questions
    You may want to talk with a knowledgeable oncologist if you have questions about your cancer. Oncologists can do more than just prescribe chemo or tamoxifen. They can give you odds of how likely you are to have a reoccurance of the same or a different cancerand how to reduce those chances. They can give you an idea of whether a genetic test is likely to be of use or not. Maybe you don't have any questions, but if you do you may want to make an appointment, if possible with a breast oncologist associated with a really good university clinic.

    cabbot, the second
    cabbot, the second oncologist that i saw that has dismissed me is the head of the oncology dept at the UW-Madison Wausau campus! We dont have any oncologists that are specific to the breast.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #14
    2nd opinion for sure
    BUT I WOULD think any type of cancer no matter what the seriousness is you would see an oncologist...
  • jayeroche
    jayeroche Member Posts: 16
    #15
    disneyfan2008 said:

    2nd opinion for sure
    BUT I WOULD think any type of cancer no matter what the seriousness is you would see an oncologist...

    2nd Opinion
    I have had double mastectomies after a lumpectomy for an invasive tumor showed multiple DCIS. My surgeon said that even though they removed all the breast tissue, I would not need rads but I still had to see the Onc to determine if I would need chemo. Turned out I did and have recently started. When the Onc told me that there was an "activity" marker of the tumor that was too high for their liking they recommended chemo. I asked why the surgeon didn't give me this information, his reply was basically explaining the doctors look for certain things. Meaning surgeons look for margins and lymph nodes and Oncologists look at stages and activity.
    My situation is different because I had an invasive tumor that was almost stage 2 and high activity along with the multiple "pre cancerous" cells. I however did not have lymph involvment. Thank goodness.

    Anyway, a second opinion would be a good idea if for nothing more than peace of mind.

    Good luck...peace and prayers...

    Janis

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