"Cancer Free" But Still in Treatment?

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honeybdgr
honeybdgr Member Posts: 3
edited July 2016 in Chemotherapy - Before, During, and After

After recovering from surgery, I met with my oncologist to discuss the pathology and she offhandedly threw in that I was now considered "cancer free" because there was no cancer that they could see in my body. However, due to pathology characteristics and Oncotype findings, she still wanted to pursue chemo. She explained that it was an insurance policy to kill any microscopic cells lingering. I agree with her and will be doing the chemo, however I wish that she had saved her "cancer free" declaration until after chemo. I feel like I'm being over zealous with my treatment because I am now "cancer free". Like I'm just "choosing" to put myself through chemo instead of it being a medically necessary treatment to get rid of the cancer.

After that appointment, I had additional questions about the chemo that I reached out to her and her nursing staff with and didn't hear back from them for a week. When I did, they offered for me to schedule another appointment (more time to wait for an answer) to discuss my concerns. I requested answers over email or phone (taking more time off from work after recovering from surgery is difficult), they agreed and said they would speak to the onc for answers. They got back to me another week later with another request to come in to schedule an appointment.

Needless to say by that time I had found another onc, being leery of working with someone who was that unavailable. What if something happened during treatment? I would be on my own to figure it out. I had been excited to work with her, she was with the best major cancer center on the west coast that was 5th in the nation for treating breast cancer. To me, I now felt like just another number in their system and had already experienced their surgery team collapsing my lung during surgery, and passing my symptoms off as anxiety, over medicating me with narcotics and discharging me from the hospital. Another ER doctor diagnosed a 60% collapsed lung a day later when I couldn't breathe and I had to have a chest tube for a few days and was hospitalized for a week. No one from that cancer center ever took any responsibility. I was a fit, active healthy young person with little risk for complications. Then this onc making the cancer free statement and going MIA when I was trying to get more information to make a treatment decision was the icing on the cake.

I'm now with a smaller health system but it is much more personalized and my onc gets back to me right away. Their "cure rates" might not be as high, but at least I feel like I'm being treated by professionals who hold a standard of care. It is also down the street from work, which make infusions / appointments so convenient. At this point, personalized care and convenience (to be sure I can still perform job duties) is pretty important.

Has anyone else felt like this about treatment after surgery and being "cancer free"? Has anyone else "fired" a provider because they were non responsive or downright negligent?

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  • LoveMyFamily
    LoveMyFamily Member Posts: 58
    edited July 2016

    I've met with my oncologist just once so far and he also said I'm considered cancer free since the margins of surgical excision were clear. I believe it's just the standard term they use, yet most of us go on to some kind of "insurance" treatment. That said, I'm glad you fired your oncology team, since they were not serving you well and you felt like a number. I would bet good communication with your care team goes a long way in increasing those survival rates. Best to you!

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  • Artista928
    Artista928 Member Posts: 2,753
    edited July 2016

    We don't know if we are ever cancer free, even if you go through everything. All it takes is one cell to have escaped and start it up. That's why I threw the book at it and hope that it has actually made me cancer free.

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  • Greyt2mphrn
    Greyt2mphrn Member Posts: 103
    edited July 2016

    I understand how you feel. I was referred to the leading teaching hospital and was referred to the best surgical oncologist. She treated me like a piece of cancerous tissue: she could not get done with me fast enough. She cut my cancer out and now has thrown me away. She won't answer calls or email- referring any questions to her nursing staff. My medical oncologist would not even look me in the eye all the way through chemo - which I had major problems with. He ended my chemo early, against my will and kicked me out of the center when I questioned him about his behavior towards me as a patient. I met with another doctor from the same system but she told me upfront that she did not want to be my doctor because of what my old oncologist had communicated to her. i am still without a medical oncologist months later and am headed into yet another issue: radiation therapy. I am considered "cancer free" but boy is the cost of that insurance high! I have neuropathy so bad I can barely walk. My fingers and feet go from pain so bad with cramping I want to die to hot flashes that make my hair so wet I look like I've been swimming. I have a problem with this cancer stuff- we can do everything right-throw everything there is at the cancer- chemo, surgery, radiation and years and years of hormonal therapy to kill off any assemblance of estrogen or its precursors. But just one cell that goes rogue can throw all that in the toilet and we can go from stage 0 to terminal in a heart beat and no one but no one can tell me why it happened or when or if or who it will happen to. It frightens me and makes me terribly sad.😢

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited July 2016

    Nobody should ever tell us we are "cancer free" because we are really only "no evidence of disease".

    And even when we throw the book at this disease, as my onc did, we need to realise that we have varying chances that it can return.

    It's really distressing when I hear of such poor treatment from so-called medical professionals.


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  • dtad
    dtad Member Posts: 2,323
    edited July 2016

    Grey....I'm so sorry you have been treated like that. This disease is tough enough when you have the right medical team. My advice is to keep looking until you find someone you are comfortable with. Good ones are out there. And yes this cancer thing is scary. IMO its a crap shoot who recurs and all the crazy stats really mean very little. Good luck and keep us posted.

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  • Totallytubular
    Totallytubular Member Posts: 62
    edited July 2016

    wow that is a horrible story.. I am so glad you've moved on. They call us cancer free but it's never really clear. Adjuvant therapy is for anything that might be there..there is no way to tell. I had the chemo as an

    Insurance policy too. Sucks. But got it done and moving on to hormonal therapy which is also very important.

    I felt like I over did it too. But it is a mysterious disease, you don't want to be on the other side of the statistics. That made me feel better. I'm at a major cancer center and also get missed calls. On the verge of

    Changing too to get personal attention. There is nothing better! Good luck with your recovery honey badger!

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