u/ImColdandImTired

T2N2b. HPV P16+. PET and CT pre-surgery show no spread to other side. Radical tonsillectomy and modified neck dissection, followed by immune therapy and metronomic chemotherapy.

Small reactive “spot” near site of original tumor (surgeon says it’s in lymph tissue behind the parotid gland) one year later. Still no evidence of spread on either PET or CT.

Two oncologists each with close to 40 years of experience say “radiate the metabolically active spot only.”

IMRT radiation therapist says no, will only treat if we also do the entire side of the neck where the lymph nodes were removed.

Proton Therapist refuses to test unless we do full length of the neck on both sides. Says ultimately, he’s responsible. Despite me noting I would be more than happy to give a sworn statement that I refused bilateral treatment against his advice.

The reason we went with immune therapy instead of adjuvant post surgical radiation in the first place is to avoid damage to the carotid arteries because of my already extremely high personal risk of a stroke (about 29%). Radiation would double that risk to about 58%.

The risk of cancer spreading to the opposite side if not treated is only 17%.

IMRT doc is more reasonable, but the exit dose makes the risks or all the other side effects higher than doing both sides with protons.

Gathering information on this whole process. Patient handout keeps referencing changing into a hospital gown for simulation and for daily treatment. Are you really required to be naked, wearing a hospital gown, for treatment? I can understand how a bra with underwire or hooks and eyes might interfere with the beam during treatment for breast cancer, for instance. Or metal snaps and zippers on a pair of jeans might be a problem with pelvic area treatment. But how could it possibly matter if you’re wearing a bra and your own clothes, as long as the neck is completely clear, for a beam directed at your head or neck?

Google says it somehow interferes with the CT scan they do every treatment period to make sure you’re positioned correctly. But it’s not been an issue with any of the PET or CT scans I’ve had up to this point, so that seems a little far-fetched.

It’s been a lot the past couple of months.

Lost one of my best friends to a long battle with cancer a couple months ago. Was asked to help with parts of her memorial service. Had that a month ago.

We’re in the busiest couple of months of the year as far as work goes. My husband’s work has become incredibly stressful in the past few weeks.

Been watching an area of increased uptake on my PET scans for the past several months. Got confirmation two weeks ago that the post-surgical immunotherapy protocol we chose just isn’t killing it fast enough. So I see proton therapy next week for consultation and simulation planning, and will be spending my summer away from home and family for treatment.

Two of my other best friends are going through major struggles with jobs/job security, their health, their partners’ health, and one their parents’ health.

This week, we’ve been working with the family of the bestie we lost, because it’s her birthday, a milestone birthday for her child, and the first Mother’s Day for them without her.

But the straw that put me over the edge? Finding a jury duty summons in today’s mail that will fall right in the middle of the time frame I’ll be having radiation.

Edit: I know it’s just a matter of getting a medical excuse from my oncologists, but it’s just one more thing.