Details III, medical and radiation oncology 2003

Healing after the removal of the sentinel node and the tumor,  (2.6 cm, grade 1, stage 2, er/pr+, her2-) (no positive nodes) went along well, except for a stubborn area of encased fluid called a seroma. It was near the incisions, which were on the right side of that breast near the armpit. Surgeons, I believe, aim for this area, as a small fold in the skin there helps mask the scars. I had nursed two babies and had had experience with engorgement and with mastitis. The seroma felt like a golf ball sized area undergoing both issues. At my first follow up appointment with Dr M she assured me it was nothing major. “I can drain it if you want, but it will fill up again probably.” Hm. It was hot to the touch, swollen, and very uncomfortable. It leaked a pinkish fluid onto the bedding at night. I asked to have it drained, and she somewhat reluctantly agreed. I was pretty sure she had me tagged as a problem patient by now.

I returned to her office for a second draining two weeks later, and then, on my way to a family reunion night, had to get to the ER in Portland to have it done, yet again. I began to get genuine relief after that, with far less fluid accumulation. I wondered why Dr M was so off handed about the issue, so unwilling to be informative and responsive to it. At our last appointment she said something vague to me like, “Well, I never know what to tell patients, I don’t want to set up expectations for problems…” She made the standard referral to a medical oncologist and a radiation oncologist, and said goodbye. When I asked about prognosis, she almost laughed, implying that I had the most routine, almost banal case of early breast cancer, and that nothing more would likely come of it. I took that bit of opinion quite seriously, but I lost interest in using womens’ health specialists in the future, when I could access local, well regarded, mainstream providers.

My single meeting with the medical oncologist was brief. I don’t remember his name. His office was in the same complex as Dr M’s. I sat down and waited for what he had to say. He said that the standard of care for my type of cancer would be a five year course of Tamoxifen. I asked him to describe the benefits of taking it over the risks of not taking it. He gave me some statistics, something along the lines of using the drug would reduce my risk of a recurrence by 3-4%. I asked him what my recurrence risk was anyway. He thought that it was perhaps an 6-11% chance. OK, I thought. I have a low chance of recurrence. I can take a medication daily that will remind me of having had cancer ever time I took it, in order to what? Chisel away a percentage point from my already low percentage of risk? No, thanks. I said as much to him, as he was asking for the name of the pharmacy I used. I asked for a paper RX to keep with my records, which ended our already very brief and, in my opinion, unproductive discussion. I left his office knowing I would not be going back.

Radiation oncology was a horse of a different color. My first appointment with Dr S was at the radiation center in a small city 90 minutes from my home. He was a kind person with a sincere warmth that helped me immediately feel a degree of trust in him. He described the set up and the routine of radiation treatment. I could agree with the plan because I had a better idea of the role that radiation played. I booked an appointment for measurement (simulation) and tattooing, then a daily fifteen minute slot for the next six weeks. The treatment room was like something out of Star Wars, a large empty space with unidentifiable revolving equipment center stage. Five times a week I came into the offices, changed into a johnny, stretched out on a padded table, extended my right arm backwards onto a custom built bracket, while my exposed right chest area was aligned for the proton beams. The staff all left, and the room was darkened. Loud buzzing and odd light beams signaled that the radiation was being delivered. I felt very little sensation, other than exposed, and that feeling diminished over the weeks. I had been told that a heavy sunburn would likely appear on the radiated tissues, and it did. The reality of cancer and its dangerous treatments came rolling home again, as did my frustration with knowing I had a minimally aggressive tumor type at a very early stage. Was this overkill?

The final week of radiation, week seven, included longer doses and was given at a different facility which was an additional half hour’s drive from my home. I had tried to omit this step due to my increasing concerns about damaging tissues, but agreed to it in the end. Called the boost, it was to be a concentrated dose. All thoughts that I was going to escape with minimal burning flew out the window. The boost process increased my skin’s sensitivity and created second degree burns to the quadrant that was treated. That area took years to lose the orange-red coloration, after which it took on a colorless cast. There are, I have since found out, long term consequences of this kind of radiation. affecting the skin, muscle, underlying organs like lungs and heart, as well as bone. I don’t know how much of the metastatic activity in my bones, lungs and chest wall now may have had some kind of origins in this treatment from eleven years ago. Maybe none.

I was discharged from treatment for this initial breast cancer episode with as clean a bill of health that a cancer patient can get. I had what other patients sometimes describe as increased motivation for living, and I promptly began to do the things I most wanted to do. I did not identify in any way as a survivor of anything other than the treatment itself. I was irritated by the national attempts to rally patients in pink for fundraising.  I dismissed the whole episode, and with it, almost all concerns about cancer coming back.

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3 thoughts on “Details III, medical and radiation oncology 2003

  1. I too don’t “like” your post as a cheerful read but I like your post as an honest, educational and moving saga. Thanks Marcia

    1. That is almost funny, because my husband came in this afternoon and said he wanted to click “like”, but didn’t want to imply that the content was a good experience. I do understand, and thanks for the support.

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