My surgical oncologist fired me. Now what?

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peppopat
peppopat Member Posts: 90
edited September 2017 in Surgery - Before, During, and After

I'M 65 YEARS OLD.

Yesterday, I went in to have lymph nodes removed---that was the doctor's plan but NOT exactly MY plan. Days earlier, after it was leaned that my DCIS was not just DCIS, but mixed with a grade 1 IDC, 4mm. I would require SLND and possibly more.

2 weeks later the plan was to look at the sentinel nodes and if there was any indication that they possessed disease more than 2mm, he would remove ALL of them. I said, "yes, OK." but I just agreed "to be nice" as patients so often do, unfortunately. That was on a Friday and come the following Monday, I had done my research, learned of alternative options. I made the decision to NOT agree to ALND should the results bear out a more aggressive approach.. I relayed my revised OK to the doctor's staff--LYMPH NODE BIOPSY ONLY.

I had a feeling that this would not go over well with this surgeon.( Just kinda know those things.)

Minutes before the SLND, I was told to find another doctor after this, regardless of need for additional surgery.. I just let him speak as I was taking it all in. Again, I just said, "OK, if that's how you feel." Hours later, after I had time to think about this, it only leaves my with the impression that some doctors simply cannot stand the idea of a well-informed patient changing the plan. I am around doctors all day long and have tremendous resources to options for treatment. Ordinarily, one would think that the logical plan moving forward would be to find another surgeon. Not so easy when there are subversive entries made by the surgwon that "this patient is noncompliant." Try getting another doctor in their network after that!!

http://www.patient-safety.com/blacklisting-patients.htm

In case you're wondering what I countered with as a course of treatment, I told him that if the any of the sentinel nodes were diseased more than 2mm, I would move forward with radiation, AS CLEARLY A MORE CONSERVATIVE APPROACH, in the guidelines.

Your thoughts, especially to those that have "been there" would be tremendously appreciated.

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Comments

  • Beatmon
    Beatmon Member Posts: 1,562
    edited September 2017

    Not that you want to keep him, but in the carevof the Kidney patient the Doc must also notify certify by certified mail and offer a list of other available doctors.

    Why would you want to have all of your lymph nodes removed, suffer all of that extra pain when the the Sentinel node can tell you what you need to know? ...and increase risk of lymphedema

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  • peppopat
    peppopat Member Posts: 90
    edited September 2017

    I won't have the results of my SLND biopsy for a few days. I am not in the position to move past additional surgery as my RECOMMENDED course of treatment, until AFTER I see the pathology report on the sentinel nodes. If it turns out, God forbid, that I meet the threshold for stage 2, I will be forced to confront quite a dilemma on my hands--the black ball list.

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  • Aquarian
    Aquarian Member Posts: 13
    edited September 2017

    wow, thats a bit rough. But you are better off without that kind of surgeon.

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  • Tara17
    Tara17 Member Posts: 386
    edited September 2017

    my understanding from my surgeon was as follows after much discussion , she offered me the following -

    - I could choose to do only sentin node biopsy and wait for those results to determine the stage

    She and I would decide the next step after those results

    In the event of positive nodes and lumpectomy alone , could proceed with radiation without axillary dissection

    In the event of positive nodes , if the choice was going to be of mastectomy , need to proceed with full axillary dissection - studies have shown full ALNDcan be skipped with lumpectomy and RT , but no study has been done with mastectomy to safely offer to omit ALND


    I found all this confusing !! So I opted to only do sentinel node biopsy as the first step and wait for those results


    The surgical decisions one must make are intense, confusing and emotional . It's best to find a surgeon who can work with you . I am sorry that you found a surgeon who deems you non compliant for wanting SLN alone - but it's better to navigate this than to take on unnecessary risk of lymphedema . It's definitely ok to be your own advocate!!

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  • JanetMara
    JanetMara Member Posts: 179
    edited September 2017

    Ms Peppopat,

    It is sad that surgeons really have not much time and patience to deal with patients who have questions. I am thinking right now that God is directing you to a more compassionate and better one who really deals with your situation and understand what youre going thru.

    I had stage 3a measuring 9.7 on L breast IDC,HER 2 +,GRADE 3,with 5 axillary lymph node involvement, I started taking supplement(a detoxifier and alkalinizer) 2 months before the 1st chemo and I felt better,I took 2 chemo treatments 1 in november and 1 in february but because of the severe side effects,I decided to stop chemo and continue my supplement along with my soursop leaves tea.,my surgeon kept telling me to continue chemo before she can perform L mastectomy but I didn't go for chemo anymore.

    Came May,she scheduled me for ultrasoundand they couldnt believe that the tumor has shrunk and they could not find the lymph node involvement,so she ordered MRI of both breasts with and without contrast and the results were no more lymph node involvement and just a 2.7 L breast mass,so she decided to schedule me for surgery (mastectomy with axillary Lymph node dissection) and I told her,the lymph node involvement is resolved but she insisted(I shouldnt have agreed with Lymph node dissection).Right now i am on my 3rd month post mastectomy and unable to raise my left arm fully and going for Physical Therapy due to neck pain,shooting pain on my left arm and lymphedema treatment.

    After surgery the surgeon advised me to go see my oncologist and schedule for radiation.Eventually,radiation causes cardiomyopathy and lung disease,I'd rather continue my supplement and my soursop leaves tea than suffer with consequences of chemo again and radiation with no quality of life.Thank god I am doing well and planning to go back to work. The herbals that help shrink cancer are:kale,ginger,turmeric and soursop leaves.

    God bless you and take care.


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  • peppopat
    peppopat Member Posts: 90
    edited September 2017

    Hi all

    sorry it took so long to respond to all the wonderful advice given in the last couple weeks. I finally got the results of my sentinal node biopsy after waiting almost 2 weeks for the results. The surgeon didn't even have the common decency to to tell his staff to call me with the results in a timely manner. I had to get them from another doctor Just as I had hoped, all three of the sentinel node's this time were negative. I will move forward with a new doctor and radiation when I return from Europe

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  • pupmom
    pupmom Member Posts: 5,068
    edited September 2017

    I was told I was Stage 1, no nodes thought to be involved, BEFORE surgery. After surgery I was bumped up to Stage 2 because of 2 nodes with micromets. Surgeon took out 21 nodes. All but the 2 sentinel nodes were clear of cancer. I'm glad she did, because I feel more secure that the cancer did not spread beyond those first 2 nodes. Still kicking almost 6 years later, and no lymphedema!

    Doctors have standards of care, and many will not adjust what they believe is best practice to accommodate patients' preferences. At that point just look for a doctor who is more in line with your beliefs. Doctors aren't God, and neither are patients.

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