On Radiation
The Decision
My treatment plan always anticipated radiation. The established threshold for radiation is “if there were four or more lymph nodes positive for cancer” on post-surgical pathology. A bright line. I knew from my initial ultrasound and biopsies that I had at least one positive lymph node and one enlarged node. When my surgical pathology came back, it contained a welcome surprise. Only one of the nine lymph nodes taken out in surgery was positive for cancer. It was tiny and it remained encapsulated (unruptured) and hence contained. This was very good news.
For a few weeks, it seemed that I might not need radiation. I welcomed the reprieve. Not only was I tired of treatment and its effects on my body but I worried about radiation toxicities: burns; tissue damage; damage to my lymphatic drainage system; and, more ominous and extremely rare, risks of heart and lung damage.
Turns out there is a debate in the medical literature regarding “the value of post-mastectomy radiation therapy (PMRT) for those with one to three positive nodes." A gray zone. This debate prompted a panel convened by various Oncology Societies to issue a “Focused Guideline Update” concerning PMRT in early November, 2016. [1] The commentary referenced studies that show that radiation is associated with impressive reductions of risk of recurrence for women with fewer than four positive nodes. It acknowledged that these studies pre-dated advances in systemic chemotherapy treatment (including Taxol) and the use of aromatase inhibitor therapy such as Letrozole, both part of my treatment plan. While generally supporting radiation for women with 1-3 positive nodes, it recognized that some women fell into a low risk group for whom the benefits of radiation did not outweigh the risks. Was I in that sub-set?
I made my case to my radio-oncologist. She recommended radiation based on persistence of the node, however small, and the original grade 3 tumour pathology. She agreed to take my case to the Radio-Oncology ‘Board’. It concluded I was a candidate for radiation. This view was confirmed on second opinion. I conceded the point, folded my tent and resolved to check-in with standard of care in 15-years’ time.
Radiation it would be, for 25 sessions, Monday to Friday, over five weeks. It took 3-4 weeks for me to be scanned and tattooed and for my individual dosage plan to be developed. I was surprised by this as I thought radiation would start pretty much right away after I’d agreed. A bit more hurry up and wait, but it did allow us to get away on a short vacation.
The Process
Everyone had told me that, after chemotherapy, radiation was a breeze. It took me a while to believe this but as the process unfolded, I came to agree. Two dimensions of the radiation treatment process carry pleasant ‘side effects’ arising from the daily nature of treatment.
First, I got to know ‘my’ radiation technicians. They were meticulous and they are also friendly and kind. It felt safe.
Secondly, was the company I kept. Where chemotherapy was a fairly individual and isolating experience, tethered for hours to an IV machine dripping chemicals into my body, radiation was quite social. My appointments were around the same time each day, and I was requested to arrive half an hour before the scheduled treatment time. I become part of a cohort and saw faces which became familiar over the weeks. There was time for snatches of conversation and encouraging smiles; for sharing of our medical stories.
There was a warm camaraderie somehow and the seeds of friendship. Incredibly enough after my efforts to avoid radiation, I ended up finding it a comforting and reassuring experience.
Delivery
Each radiation session was similar. I’d change into a gown and wait to be called to the room with the large radiation machine – not unlike an over-sized kitchen stand mixer but with attachments dedicated to delivery of radiation beams and snapping occasional x-rays. After I settled on the treatment bench, the technicians positioned me for the beams by lining up lights connecting eight tiny dots previously tattooed on my torso and armpit. They’d leave the room. The gantry arm of the radiation machine worked its way around me stopping to deliver radiation beams.
Lights on, done.
Back tomorrow.
X-rays once every five sessions to make sure the treatment is precisely on target. See the radio-oncologist once a week.
The Burn
Over the course of radiation, a ‘radiation field’ emerged running from my neck to my armpit and around my mastectomy scar. It was quite impressive – an advanced case of sunburn! It took about 18 sessions for the burns to become apparent. They were never painful. Advised that the burns would develop, I had made a plan for skincare, lining up ‘potions and lotions’. Calendula and aloe-vera gel (from the plant) were given to me by a friend in my ‘cancer circle’. The radio-oncologist recommended Glaxol Base and I added it to my shelf. Nothing was to be applied within four hours of treatment. For the first few weeks, I used only Glaxol Base at night with calendula on the radiation rash that I had developed.
As the crisping of my skin began (and continued after radiation was over), I continued to use the Glaxol Base in the morning, and the aloe vera overnight. The combination worked: no peeling or skin blistering. The burn rapidly faded.
Although allowed by the radio-oncologist, I gave up swimming again for the duration. I had developed an irritation from the chlorine in the (mostly saltwater) pool. An otherwise restoring swim of many laps had caused mild swelling. I didn’t feel it was worth the risk of over exerting my lymph system while it was being assaulted by radiation.
I was certainly fatigued again – but in a mellow sort of way. I was able to keep driving, without being a menace to others. I wasn't as mentally sharp but anticipated that this would improve as it had after chemotherapy. The cat and I took daily naps under the duvet which we both appreciated. In fact, she marched me to the bedroom more than once when it was time for our afternoon nap!
Lymph System Impacts
I have to admit that it took me a long time to understand how to take care of myself (and my lymph system) during radiation treatment. How much stretching in the area was okay? Should I continue with lymphatic drainage self-massage? I didn’t want to lose any ground from my physiotherapy after surgery but I didn’t want to do any harm. After a series of consultations including with a lymphatic drainage therapist, I finally connected the dots as follows.
Swelling after radiation has finished is fairly common. Normal. Intervention is needed only if there is significant arm swelling.
Radiation treatments create a ‘radiation field’ where the tissue has been damaged. During the six weeks following radiation, its important to be careful not to over-stretch muscles in the radiation field. Doing so risks inflammation and, in turn, greater volume of fluid. Not good.
Radiation has pretty much toasted remaining lymph nodes under my arm and I will need to create a new drainage ‘bypass’ system. But during the 6 week tissue-healing period, take a low-key approach. Focus on gentle stretching. Arm and shoulder rolls. Lymphatic drainage massage outside of the radiation field. Slow is good – think of a pump which depresses and then fills. After that period, get back to intensifying the creation of the bypass system.
Ever eager to jump right onto recovery and rehabilitation, this approach gave me permission to slow down and lighten up (again!) The (not so hidden) message of the year.
In Closing
I’m glad to have the numbers for a lower risk of recurrence on my side from taking radiation.
I’m relieved that the immediate effects were relatively easy to manage with potions and lotions and rest.
I’m on the way to healing up and the other side of treatment.
Long sleeves and sunscreen to follow.
Bring it on!
[1] “Postmastectomy Radiotherapy: An American Society of Clinical Oncology, American Society for Radiation Oncology, and Society of Surgical Oncology Focused Guideline Update” (2016) 34 Journal of Clinical Oncology; issued November 5, 2016.