Hello Lenny @lennyc Welcome to our Connect group. There are many discussions within this group which deal with side effects and what the treatments entail. It becomes clear that we all have different issues with treatment and recovery. Fact is you can expect just about anything. The good news is the survival rate and healthy outcomes have increased dramatically in the last twenty years.
Many of us have had doctors who try to put on a happy face and positive outlook, primarily because it is in the job description. More than once I have asked the question “And how was it for you?” They of course cannot answer this.
You have choice in doctors and treatments (if you are in America) but your choice of of being treated or not is probably not a choice you want to make. That said you have to prepare for a battle not of your choosing and you have to win this battle.
I and others are here to listen, to talk with, to hold your hand. You are in my thoughts.

Hi Lenny. I’m sorry to hear about your diagnosis. I just completed radiation treatment for vocal cord cancer in September. I will tell you that the doctors were upfront about what the side effects would be and they pretty much followed what they predicted. Over the last month and a half I have healed quite a bit. For what it is worth, I would trust the doctors, follow their orders, and work hard at getting well.

I had SCC at the base of my tongue, and I'm a few lymph nodes 3 years ago. I was treated with chemo and proton radiation.

I, too, had some hearing loss and was infused with Carboplatin and Taxol, since Cisplatin could cause deafness. In my case, the chemo was not purely to kill the cancer, but to make the radiation more effective. My understanding is that proton radiation causes a vast amount less damage than photon, so ask about that.

Now to side effects during treatment and after. During treatment, my neck was very "sun burnt" from the radiation but that went away. Starting the fourth week, I couldn't swallow food, so I relied on smoothies to provide the necessary calories and proteins. I also had lymphedema which I used a pneumatic device to treat.

Post-treatment, I suffer from tightness in my neck, loss of some saliva and loss of taste. The tightness is manageable with some stretching. The saliva is not what it used to be, but is not an issue day-to-day issue. For me, the worst side affects has been my taste, it simply never came back which I understand to be very very rare.

Lenny, I wish you the best. Let me know if you want to talk.

Steve

Hi Lenny, I realize more than a month has passed since your comment and you have undoubtedly made your initial decision about undergoing treatment. I was diagnosed May 2023 with HPV related squamous cell cancer in my right tonsil and lymph node. It grew quite rapidly over the next month. I began proton radiation and chemotherapy in early July at Mayo Phoenix. Treatment was completed in 7 weeks. I would highly recommend you consider this. I was initially diagnosed in my hometown and like you, the doctors made it sound relatively easy. That was not the case at Mayo, my wife and I were fully informed as to the potential side effects but also given many strategies to avoid them. We followed all of the recommendations and thankfully I have not suffered major problems. So it is possible to undergo the recommended treatment without very serious complications. I admit that my case was very fortunate regarded as unusual by the care teams but again it is possible. It was not in any sense easy and I have been on an emotional and psychological roller coaster for the last 7 months but I’m alive! Best of luck to you.