Connect
← Return to After radiation for HPV neck cancer: Hang in there, it gets better
Discussion
After radiation for HPV neck cancer: Hang in there, it gets better
Head & Neck Cancer | Last Active: 1 day ago | Replies (24)Comment receiving replies
@colleenyoung I wish my team, anyone that is, would have Clearly and Completely explained the truth about how much damage radiation can cause to head and neck because if I had known then what I would be going through now I would have made some different decisions. I likely would’ve had more dental work taken care of even go through getting teeth pulled out and implants put in. Now I am extremely limited in my choices and risk of infection is extremely high. I might’ve given more consideration to not having the radical neck disectomy because of the damage it did the numbness from cutting nerves that likely will Never heal. My surgeon told me there was a chance that nerves could get cut but that he’s going to do his best to be careful… making it sound as though he would be able to perform the surgery without the resulting damage. I am grateful to be alive and up until about a week ago I thought I was still cancer free. My surgeon sent me for CT with contrast one week ago for a hard lump where my jaw meets my neck. The scan was severely degraded due to prior dental work and I’m still waiting on a response And praying it’s not cancer related. I’m about 2.5 years out from the end of radiation and still haven’t been able to gain weight back even with the high calorie boost mixed with vitD milk twice daily and regular meals. My appetite is still very low and I’m still tired too much of the time. I’m wondering why. I thought chemo caused more problems than radiation and was glad I was told that I didn’t need chemotherapy and that radiation would take care of my needs. I just wish More Emphasis was actually placed on defining what radiation and chemotherapy could do versus radiation or chemotherapy alone. I don’t mean to sound ungrateful because I’m definitely grateful to be alive. I just wish that the medical professionals would have been completely direct, transparent, and even blunt about everything. Especially when I told everyone to not hold back and to just be completely honest and direct.
This all feels like too much especially when now I’m really kind of fearing the worst again.
Replies to "@colleenyoung I wish my team, anyone that is, would have Clearly and Completely explained the truth..."
@jeffvalvassori I agree with you on medical team providing more information. We learn to ask more questions as we go along, but if you made it clear that you wanted details of side effects of treatment, then they missed the mark with you. Some patients would prefer not to have this information so it can be hard for the medical team to know. I wish I had known more about late effects of radiation. Just so we can recognize and address the changes.
I sincerely hope that your new mass turns out to be scar tissue and not cancer. But there are new treatments coming along regularly so we must keep fighting. A newer immunotherapy has squelched my last metastasis and after 2 years on and 3 years off it, I have remained clear. And as for the nerve damage, be patient because nerve tissue is very slow to heal. I had right sided facial paralysis 14 years ago when I woke up from surgery but improvement continued for many years. Research Lion's Mane mushrooms for support in nerve healing. Keep us informed about your results.
Connect
@jeffvalvassori, you raise a valid point that I think weighs heavily on providers about being realistic and giving space for hope. What is the amount of information to give? To what degree does the patients want all the details? And how much do they want to know about what *might* happen?
It sounds like you were upfront in making clear that you wanted to know everything. Having a full picture of the worst case scenarios, at least in hindsight, would've helped you be better prepared. I encourage you to give your team this feedback so they can do better for the next person who asks for the same detail. Patients have a lot to teach back to doctors. It's a 2-way street and the good ones want to learn from the patient experience.
I can only imagine how scary it is to go through testing again fearing that the cancer may be back. As you know, not all lumps are cancer and it is a good thing that your team is following up. Have you had the results back from testing? What's next?