Friday, June 20, 2014

Mark’s Cancer: The Next Step

A few weeks have passed since Mark had his last operation to remove a lymph node, in order to define whether his breast cancer has spread. Since he was diagnosed with invasive papillary carcinoma, a very rare, but encapsulated cancer, everyone assumed the lymph node would be clear. When we received the pathology report, however, 80 scattered cancer cells were found. Nothing to worry about, so the specialists said, because those cells don’t mean much (“We count this result as 0” – Hmm, we thought zero actually meant zero…) and they might have ended up in the lymph node system after the first biopsy “poking” in Tahiti. We also found out that Mark, as assumed, has the BRCA1 mutation, which is now generally believed as the cause for his breast cancer.

Other than that, Mark is healing well from surgery and we have come to the point, where we now have all the information we need about his situation. What we don’t have is results, statistics or accurate prognoses about his disease, because he falls in a category all by himself. Mark is a male of 43 years old, with the BRCA1 gene and a very uncommon type of breast cancer. Usually, when a man is diagnosed with breast cancer, they automatically do a mastectomy, since, usually, not enough breast tissue is in place to remove the tumor with clear margins. In Mark’s case, his surgeon from Newburyport did a great job and succeeded to remove the tumor with clear margins, meaning all the cancer would theoretically be removed just by this “lumpectomy”. Hence, the preferred follow up treatment would be radiation and hormone treatment.

Fast forward to a couple of days ago, when Mark’s case was brought to the “tumor board” in Dana Farber, one of the top cancer institutes in the US. Mark and I were meeting with our radiation oncologist (and head of the radiation department) to set up the radiation plan and to see what the board had decided. Big – and unpleasant – was our surprise, when we heard that many people of that meeting felt that a mastectomy would be the best plan of action. What??? I thought we had passed that point already? Where the heck did this come from all of a sudden? Here we believed we had a plan and we could move on, starting with the treatment. Instead, we were offered an alternative again and, worst of all, after some more thinking and talking, this alternative (which was actually an old alternative that had always been on the table) started to make sense!

So, there we went again, thinking, talking, reading and researching (mostly in vane) our two options: mastectomy (= another operation, a few weeks recovery, a permanent scar and missing nipple, but that’s it) OR radiation (for four weeks) in combination with hormone treatment (for five years) with possible side effects. Both options had the same outcome and chance of recovery, but which one would be better to prevent any recurrence, which is now all that matters? It boiled down to a personal preference, and… Mark was “lucky” he had a choice!

It is June 20th today and Mark has been in the States for over a month and a half, about the same time we have known about his dreadful cancer verdict. As of this day, we finally have a plan and a schedule and that is good news. Yesterday, radiation technicians “mapped” his body for the weeks of therapy to follow, and on June 26th (after a “dry” run the day before) his 19 radiation treatments will start. Five days a week, he will have to lay in a machine and get zapped (the actual radioactive beam will only hit him one minute or so). Once all this is finished and we have met again with our wonderful, skillful and highly experienced medical team of Dr. Jeselsohn, Dr. Carter and Dr. Harris (all three are also professors at Harvard University), Mark will most likely have to take the hormone drug Tamoxifen for five years. This, with a personal choice of natural remedies and a healthy lifestyle should minimize bad cancer cells to linger around, multiply or recur. We sure hope so!

The CAT-scan machine for Mark's "mapping"
Mark's view from the CAT-scan machine. Looks familiar? :-)

The radiation technicians left some magic marker spots behind. Five tiny, but permanent tattoos will help line up the machine during treatment.


Unknown said...

When I was first diagnosed, my doctor's nurse told me that I would have to take responsibility for my own healthcare. The physicians did not agree on treatment. It ultimately meant that I had to make up my own mind and therefore face those consequences.

It is a difficult thing for you that I understand from personal experience.

For a year I avoided radical surgery but eventually gave in to family and physician pressure. Was it the right decision? Honestly, I don't know.

Ambiguity is part of this journey. Not fun!

Liesbet said...

Douglas, I am sorry to hear that you were a cancer patient, and I hope you can call yourself a cancer survivor now! :-) Some choices are hard as they are, but when it involves your body and your health - and you don't have enough information, confidence or support to make a decision - life is very tough! I hope you are happy and healthy now, and that such ambiguity is currently absent in your life.