Goldilocks and the three treatment choices

"I was in my early forties
With a lot of life before me
And a moment came that stopped me on a dime
I spent most of the next days
Looking at the x-rays
Talkin' 'bout the options
And talkin' 'bout sweet time"

My recovery from surgery is winding down and I am nearing my next step in the treatment of my recurrence or new primary. Either way, I have more cancer which puts me in the position of making more decisions about treatment.

I think anyone who has dealt with a rare version of cancer has had the same problem when it comes to treatment decisions. There are no great choices in the first place and with the added knowledge that available treatments are not designed for you and few studies suggest the right course, it can be unnerving at the least.

There is a chance my recent mastectomy cured me. A chance that all of the cancer was removed and is gone forever. However, there is a chance some cancer remains. The chance some cancer remains is not so small it can be ignored. It’s probably not as great as a 50% chance but it is more than a small chance.

My oncologist tells me that this is my window of opportunity for killing the cancer for good. He recommends more chemo. However, he has no idea if this new chemo regime will be effective against any remaining cancer cells. So I'm left with the following facts.

1.     There is no way to know if any cancer remains

2.     There is no way to know which treatment I should take

3.     There is no way to know if the treatment worked or if it was necessary at all

For the past few months I have been in contact with another woman who amazingly is in the exact same position as I. Despite the fact we live half a world away and we both share this very rare form of breast cancer we were able to connect through Facebook. Of course there are some differences in our cases.  Her new lump appeared in the same location as her original cancer, while mine was in a new spot. She found her new tumor while in radiation and I found mine ten weeks later. There are similarities as well. She also had a lumpectomy and dose dense A\CT for her initial diagnosis and a mastectomy for her second tumor.

Her doctors are advising her to forgo any addition treatment. No chemo. I’m frightened for her. I’m frightened for me too but that is why I will do another chemo regimem. I would never be able to forgive myself if something more happened and I knew I had a chance (however small) to beat the cancer but didn’t take it when I could.  We’ve both agreed that we will not be comfortable for some time regardless of our choice. She is comfortable with hers and I am comfortable with mine.

This brings me to the third “bear” in this Goldilocks story.

Today I was reading the facebook page from another woman with metaplastic cancer. She lives in Australia. Like the other two of us, she was diagnosed last year with MpBC and underwent chemo as her primary treatment. But unlike the other two of us, she has gone to great lengths to ensure her treatment was the absolute best possible plan for her individual case.  She had an Australian biotech firm test her tumor and recommend a treatment option.

So I was not surprised to learn today that she has now taken an additional step. She has borrowed a large sum of money from family and friends and gone to a clinic in Germany to undergo “infusions” intended to improve her immune system and train her body to fight off cancer. She has no reason to believe she still has cancer. She has not found a new lump. She has not had a bone or CT scan that indicates anything is amiss but she has decided to do everything in her power NOW to ensure her cancer never returns.  When I read her FBpage I thought she was a little crazy… until I read these words:

“The only time I will feel shame or remorse is when I am told there's nothing more we can do and I know that I could have done more.”

So there you have it. The three choices of cancer treatments. You can do a lot, more than most of us would spend in time and money. You can do a little, something to hang your hat on and say, “I tried to win.” Or you can do nothing, a practical approach based on the belief that you are cured already and doing more would be torturing yourself to no end.

For me the second round of treatment will have to be ‘just right.” I cannot live comfortably knowing I did not make any effort at all when I had the opportunity and I can’t be obsessed with my condition to the exclusion of what I consider my own common sense. I hope the bed that I have made will allow me to rest comfortably for a very long time but I pray that these two women have also found a comfortable place to rest their heads as well.  

I asked him
"When it sank in
That this might really be the real end
How's it hit you
When you get that kind of news?
Man, what'd you do?"

Live Like You Were Dying