Carol’s Letters – Letter 1

The following is a letter written by a woman I know, updating her family and friends about what she’s going through with breast cancer.  Carol’s letters are written with a blend honesty, courage and humour as she navigates the sometimes bewildering and always surreal landscape of cancer treatment. I thought they should be shared.  She agreed to let me post them.  Here is one of the first, originally written in January 2009:

January 21, 2009

Subject: Update

 

Hi everyone,
It’s hard to know exactly where to start…One of the many things that I am learning is that each of my caregivers looks at my breast cancer in a slightly different way. The surgeon was primarily focused on locating and removing the tumor, infected lymph nodes and sufficient surrounding tissue to ensure that my margins were clear. His post-op report to me was that all of the nodes in my arm pit were removed and 5 of 15 nodes were infected, the 4.5 cm tumor and surrounding infected tissue were removed and the margins were clear. In addition to this, there was no metastases to other organs. All of this brought me to the diagnosis of stage 3A cancer.

The oncologist also has staged me as a 3A but they look at it a bit differently. What is the composition of the tumor/cancer, how aggressive was it and where could microscopic cells have spread to and what do I have to do to find those marauding cells and kill them so that we never have to deal with a recurrence?

We (Linda and I) met with the oncologist today at Princess Margaret (PMH). His interpretation was as follows:

-the tumor was large (4.5 cm)
-5/15 lymph nodes were infected (the cancer has learned to move)
-the tumor was very aggressive: Grade 3 (as he referred to the stages 1 thru 3: the good, the bad and the ugly…I had the ugly)

The “Grade 3” is important to him because it indicates the aggressiveness of the tumor, its ability to travel and, therefore, how aggressive he needs to be with treatment. Having said that, the cancer cells are Her2 positive and estrogen/hormone receptive, which is good news for treatment as they have drugs that can specifically target and bond to the receptors and prevent cancer growth.

What does this mean for my treatment? At PMH it would mean a standard protocol of 3 courses of FEC (the Google junkies may know what that means, this is a combination of 3 different chemo agents), followed by another three courses with Taxotere and Herceptin (approx 4 ½ months in total for chemo), followed by a year of Herceptin and 5 years of Tamoxifen. The radiation follows the chemo.

Where he threw us for a loop was in recommending that I go to St. Mike’s for treatment where they offer a different protocol – TCH. He feels this is my best treatment option, is the best treatment available and is currently the proven standard in Alberta and the US. This is available at St. Mike’s because they are combining this protocol with a trial with a drug called Avastin. But either way with this trial I get the TCH protocol which, in his opinion, is better than the FEC protocol currently available at PMH. The benefits of this are that I would receive the Taxotere and Herceptin at the very beginning – the “T” and the “H” of TCH (targeting the very essence of my type of cancer right away) and avoid some of the other more negative side effects of the FEC treatment protocol. Other than this difference the duration of this treatment is the same. After about 4 ½ months of treatment I would return to PMH for the radiation.

He was really quite firm that this was the bet route to go. PMH will also soon offer this treatment but they don’t have it yet (complicated to explain but I will if you want me to).

Long story short…I am going to see the oncologist at St. Mike’s, hopefully in the next few days, to discuss participating in their program. If for some reason I decided not to go that route, the doc a t PMH said I could go back to PMH and begin chemo there with no time lost. He did however say that he’d likely want to see a brain scan…to figure out if I was crazy for not going to St. Mikes…

That’s it for now. I’ll talk to each of you over the days to come but wanted to give you this basic info as quickly as I could.

Thanks for your support,
xo cw

 

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