Cancer Management

I took my neighbor with me today to see the results of last week's CT scan. The spot in my right lung is still there and maybe, but very slightly maybe, a little larger than it was in my end of July scan but smaller, definitely smaller, than it was in my spring scan.

My advocate neighbor asked why they didn't want to take a sampling of cells and the doctor said that because it was too small to see on an x-ray, it would be difficult to get cells from the spot and very uncomfortable and expensive to get information that we already know (that it's breast cancer).

Then she asked him why he didn't send me along to one of the two or three places in Japan where they could treat me with protons to zap the stuff in my lung for good. He replied that my case would not pass the eligibility requirements as breast cancer in a lung is not so life threatening as lung cancer in a lung.

Then she asked if I should go back on chemo right away to deal with it. He reiterated the need to balance cancer management through vigilance and hormone treatment with blasting cancer with possibly debilitating treatments and that I should expect to be watching and treating for the rest of my life and that my current condition was not especially drastic or immediately life threatening.

We asked for records for me to take with me for a second opinion and he was very encouraging about any actions I might take to be reassured or to help me make decisions on how to manage my cancer. I'll go back next week to pick up the records and he'll send my request form from his hospital administration to the hospital of my choice (the National Cancer Center) to get the ball rolling. My neighbor will also call the National Cancer Center and try to get me seen by her specialist, the head of respiratory and breast oncology (I think it's actually two departments that he heads) when he returns from a symposium in the States.

In the meantime, I continue with the daily toremifene tablets and feel fine enough. I guess living with cancer is better than not living with cancer but still feel that living without cancer would be best...


Tamah said...

Dear Kathy,

All of this information/news is extremely encouraging. I am so glad you are following through with the second opinion, and with your advocate friend - she clearly knows the right questions to ask. Yes, we must be aggressive in seeking opinions/advice/alternative approaches for our health care. My husband and I are doing this for his health condition, and amazing connections have been made. There will be no complete cure, but we are LIVING LIFE and LIFE is to be LIVED. All the while doing maintenance work on the health. My husband's doctor no longer knows what to expect from us when we walk in, and he has learned to listen to our ideas - so we balance our wishes/needs/information with his expertise, and we have found that he is more forthcoming with ideas and suggestions for us. We are ACTIVE PARTICIPANTS in my husband's care of his health.

Gosh, sounds like a sermon here. Not meant to be. Just advocating more and more of all you are doing. Good work.

Love, Tamah

dotmoll said...

My Dad used to say that if he couldn't have good health, he was all in favor of a better standard of bad health...and with a neighbor to play good cop/bad cop with you, that sounds more achievable.

Thank goodness your doctor was supportive of your plans to get a second opinion - hope the NCC consultation goes just as smoothly.
All the best, "flyingkiwi"