Today was another day filled with learning new things. Joe & I met with the radiologist oncologist to discuss the ins and outs of radiation. The appointment was lengthy, which we appreciated. The doctor took her time discussing everything related to radiation, helping to answer our questions and we were even able to look into the radiation treatment room. I’m feeling a bit like information-overload from this week but I’m grateful to be at the step where I can learn the details of what’s next. A few things we learned today:
- Usually when I meet a new doctor, I am asked to share my journey to diagnosis (how the lump was found, what happened when/next, when I was diagnosed, chemo dates, etc). I have all of this pretty much memorized at this point but today the doctor came in and (from memory) told me the story. It was an exact recap of my experience last summer, all the way up to finishing chemo and my future surgery date. She even asked about my son. It was an interesting change of pace to me, having my story shared with me versus me being the person sharing it.
- I have a follow up visit 6 weeks after surgery. This will be used to chat with the doctor again, have scans done to determine where the radiation beams need to be placed and to have me fitted for my…pillow? I’m not sure what the medical term was but basically I will need to lay still while my head and arms (above my head) lay on a “pillow” that is then vacuum sealed around me. It is used so that I stay in place while I receive the radiation treatment. I could see all of these molds hanging on a rack in the back of the room. Interesting to think that my name will be hanging amongst them in a few weeks.
- We discussed the side effects of radiation, both immediate and future.
- Immediate side effects include rash and skin irritation, similar to a sunburn but from photons instead of UVs; a sore throat because the lymph nodes in my clavicle will be treated, which is next to my throat; and fatigue, though it shouldn’t be as severe as it was during the 6 chemo treatments.
- Short term side effects include a raised breast (this has a decent chance of occurring at 30%). There is also the chance of scar tissue becoming worse over time, resulting in the need for an additional surgery to potential remove the damaged tissue. This would be after reconstruction.
- Long term side effects include a risk of heart attack, since I will treated on my left (I think the percentage was 1 – 3% chance); future localized cancer in the area treated (this percentage was minimal, around .5% but would occur in 10+ years, if at all).
- Lymphedema is a side effect of removing my lymph nodes and the chance increases with radiation. Basically, if I injure or cut my left arm/hand, lymphedema may occur. This is basically swelling in the affected area but the risk of lymphedema will never go away. Your lymphatic system is used to move fluid around your body, such as fluid to help heal a wound. The analogy shared today, is that when your lymph nodes are removed, it’s like removing a part of the highway. The fluid needs to find a way out and so it starts using different routes, which may not work as well. When radiation is mixed in, that highway – that already has pieces missing – is completely congested, making it even more difficult to move the fluid out. Manual massage is used to help remove the fluid, if swelling occurs.
- At the planning session 6 weeks after surgery, I will be tattooed three times. These tattoos are basically tiny dots, one on each side of my body and one in the middle of my chest, which will be used as a starting point for each radiation session to guide the beams (and me) to the right position.
- I have a list of lotions to use that will help with the skin irritation, all of which are bought over-the-counter. As the irritation worsens, the doctor will provide additional moisturizers.
- Radiation will be Monday through Friday for 6 weeks. The radiation itself will only be a few minutes long. The prep and post radiation activities take longer than the actual radiation, making my total appointment each day anywhere from 15 – 30 minutes long. I will see the radiologist oncologist once a week as well, which will probably be an additional 15 – 30 minutes that day.
- During the treatment, I will need to lay completely still. In addition to the standard use of the beams, my treatment will include deep inspiration breath-hold, where I will need to hold my breath for 25 seconds at a time with 20 seconds in between. This will be done a few times as well and will help ensures that my heart is protected from the beams. Guess I better practice my breathing techniques!
- Oh, and I won’t be radioactive, baby!!
That’s all I can think of for now. I’m off to enjoy a glass of red to celebrate this week being over. Hope you all have a happy, safe and fun weekend!!