Radiation Oncology Appointment

My appointment this afternoon went really well and was really informative, so this is going to be a pretty long post.
My appointment today was at the Helen P Denit cancer center at Montgomery General Hospital, which is run (the cancer center, not the whole hospital) by the University of Maryland cancer center. We got there a little early to fill out the rest of the paperwork they needed and were immediately greeted by their really nice office staff who not only had an awesomely stocked candy bowl, but they also had an entire little booklet prepared for me with information about the whole radiation process from consult, through treatment and follow-up. I'd already done a ton of research before getting there, but it was nice to have that book for Josh to flip through so he could get an idea of what we'd be discussing.
The nurse, Chris, took us back to a patient consult room which also functions as their teleconference room. It was nice to be sitting around a round table to chat instead of being in an exam room. Chris had me give her my whole history back to when I first found the lump on my neck back in August. She left to update the doctor and Josh and I got to wait for them.
A little bit later, Chris came back with Dr. Kim/Grace, the resident. Grace asked a bunch more questions and talked with us a bit. It was pretty obvious that she's still in training mode and I really wanted to ask her when she first came in if she wanted me to grade her and let her know how she was doing. For the record, we both thought she did an awesome job, both with the medical questions and with her bedside (conference-table-side) manner. Once she was done, she and Chris left again, but came back a couple minutes later with Dr. Ampey.
Since Chris and Grace had exhausted all the questions, Dr. Ampey pretty much just focused on telling up what he thought the plan should be and answering our questions.
To start, Dr. Ampey took a lot of time going over his reading of my PET/CT scans and explaining stuff about my disease a lot better than Dr. Sharma ever has. I now have a lot more detailed information. According to Dr. Ampey, he would classify me as Stage IIB, not stage IIIB. I think the main reason for this difference of opinion is that technically, since I had no disease below my diaphragm, I count as stage II. However, the disease above my diaphragm was very widespread and involved almost all the nodal regions. Stages I and II are usually considered "early" whereas stages III and IV are considered advanced. Since I had so much disease in my chest, calling it "early" isn't really accurate.
Anyway, in addition to being stage IIB, my disease was also categorized as unfavorable. This, again, relates to it being advanced and involving a bunch of nodal regions. Dr. Ampey said the chest mass never measured larger than 8cm, so my disease wasn't considered bulky (bulky = 10cm or greater). In any case, the unfavorable classification is what earns me pleasure of radiation treatment. Dr. Ampey also agreed with my decision to do 6 cycles of chemo rather than 8. Basically, the standard of care for someone like me is 4 cycles of chemo, a PET scan, 2 more cycles if the PET scan was clean, then radiation and that's exactly what I've done.

The plan for radiation is dose of 30Gy. A grey (Gy) is the unit of radiation doses (read more about the basics of radiation here). I'll get the dose over the course of 15 days, at 2Gy per day (this is called fractionation: giving small doses over the course of a few weeks to add up to the total dose). At this cancer center, they give what is called involved field radiation therapy. Basically, what this means is that they'll target the radiation to just the areas where the cancer was and avoid all the healthy tissue. When they treat me, I'll be laying on my back with my head tilted back and my hands on my hips so my upper arms are moved away from my chest. The areas they'll be aiming at include the back of my neck (up to the base of my skull pretty much), the sides of my neck, the area around my clavicles, my arm pits, and the area above/behind my heart where the largest mass was.
We went through a whole list of both short term and long term side effects and how we'll deal with all of them. While I'm getting treated, there are a few things to watch out for, but hopefully, side effects will be minimal. The big one is fatigue. I don't think radiation fatigue is quite like chemo fatigue, but I'm good at sleeping, so I've got that one covered. There's a possibility I might get some skin redness, sorta like a sunburn on my chest. The side effects I'm most worried about are esophagitis and pharyngitis, basically, irritation in my throat or esophagus. For people that get these, it seems pretty unpleasant and can make eating and drinking pretty painful. If it becomes an issue, Dr. Ampey said he'd give me a Fentanyl patch to deal with the pain. I'm hoping it doesn't become an issue. I'll also probably lose some of the hair at the back of my head/neck. I'm amused by this possibility just because it'll look really funny. I'm also hoping the radiation blasts out my armpit hair so I don't have to shave it ever again. Besides that, they warned me to stay away from spicy or acidy food during treatment and to stick with room temp drinks.
Dr. Ampey warned me about one middle-term side effect called Lhermittes syndrome or transient demyelination of the spinal cord (they were all excited to have a patient with a strong anatomy/physiology background and I was excited they used all the big technical terms with us!). I won't explain demyelination, but basically, this syndrome just means that I might bend over in 3-6months and have a weird electric shock feeling in my neck and back. It's not permanent, just unexpected I guess, so Dr. Ampey just wanted to warn me in case it happens.
We spent most of our time talking about long term issues, mostly secondary cancers and cardiac issues. The radiation is going to be hitting 4 pretty important organs and we discussed all of them (heart, lungs, thyroid and breasts). After radiation, I'll be in a higher risk category for issues with all of them. For my thyroid, lungs and heart, this shouldn't be too big of a deal. I'll have a very slightly increased risk of thyroid cancer, but I'll have a much higher risk for losing thyroid function. This is something I'll have to be screened for, but I already always get a thyroid panel done yearly, so no change there. They'll be blocking my vocal cord area and that'll partially block my thyroid as well, so I'll be hoping for the best.
As for my lungs, my risk of lung cancer will probably increase 2-3x above the relative risk had I never had radiation. Basically, so long as I don't start smoking, I should be ok.
The main area of concern for my heart would be my coronary arteries. Luckily, the masses in my chest are located above my heart, so the part of my heart where the coronary arteries are won't be getting any radiation. My aortic arch will get radiation, but that's not as much of a concern as the coronary arteries, so I should be good.
The biggest issue of concern will be my breasts. Because of my age, the radiation will increase my risk of breast cancer 6-8x that of a normal, non-irradiated 26 year old. If I were under 20, my risk would be even higher. When Dr. Ampey and Grace set up my treatment plan, they're going to try to keep as much breast tissue out of the field as possible. Unfortunately, the most high risk breast area is the area by the armpits (that's where 60+% of breast cancers are) and we can't really avoid that area. I'll get lots of mammograms for the rest of my life and I'll just hope for the best. Maybe they'll have a cure for breast cancer before it would even become an issue for me in 20+ years. (on a breast-related side note, there's also a chance the radiation might kill some of my mammary glands which might raise issues when I have kids. Dr. Ampey again said he'd make sure to target as little breast tissue as possible to minimize this risk since breastfeeding is something I feel pretty strongly about).

Once we got done with all our questions and answers, I got a pretty quick physical exam (=all my lymph node regions got poked). It's been determined that my port will be in the way of the radiation, so that has to come out before I start. I'm going back in about 3 weeks for my planning appointment where they'll scan me again and basically "draw" the areas they want to irradiate. After that, it'll be about a week before I start treatment. Like I said before, I'll have 15 treatments, so that'll be 3 weeks of M-F treatment. Each treatment takes about 15 min start to finish. I'll end here for now. I'm sure I'll have more radiation related items to talk about later on, but it's getting late and that 2 hour doctor appointment really wore me out. Everyone at the office was really great though and both Grace and Dr Ampey were really awesome at taking the time to really explain what was going on. There was lots of laughing and joking around and I told Josh as we left that I never knew a radiation oncology appointment could be so much fun!!

(as always, if you have any questions, post them in the comments and I'll try my best to get answers. Unless you're my mom or dad, in which case, you can just call me!)