Nancy,
To PEG or not to PEG. That seems to be the longstanding debate for at least the 9+ years I have been hanging around this neighborhood. You have concerns so I think you have answered for yourself. On to another topic.
Are you being treated at a NCCN member institution? That would be most likely Dana Farber or Sloan Kettering in NY since you are from MA. I don't know your resources or distance from a NCCN member but I would strongly encourage you to seek at least a second opinion from one. They set the treatment guidelines and they do the most research. Hearing you have two of your team diametrically opposed to a PEG is unsettling to me. If you hear two different opinions on this issue I would understand your confusion.
Cancer treatment, unfortunately, is not a one size fits all although it has yet to be determined what the true individual differences are in regard to how the treatment affects us in terms of killing the disease and/or longer term issues related to treatment. Take every opportunity along this journey to participate in data gathering for any research projects you can because that is a benefit for any that travel this road after you.
You have gotten some great information from great people that have traveled this bumpy road ahead of you. It is so tough to digest it all as you are preparing for the newness and difficulties ahead. I would tell you a couple of things I believe are key. As mentioned, if your mask feels loose, MAKE THEM REFIT A NEW ONE! This was my biggest mistake and my single most biggest regret that I cannot fix now. It should be standard practice but is not. I lost almost 50% of my weight and complained about my concerns the entire last half of treatment but went with what the experts said. Second, if the mask feels warm on your neck during treatment, have them cut away the portion on your neck. This is done by some but not a standard. Number three, DO NOT put any creams, lotions, gels or anything on your neck before each treatment no matter what they say. You can deal with issues like dryness with aloe, aquafor, lotion or whatever you like to moisturize later in the day but keep your skin clean and clear before treatment and even a while after. Nobody knows how radiation will react to foreign stuff. Protect your neck because it will be your best friend and worst enemy after treatment I personally believe forever!
Everyone is here to provide information and more important, support for you. Come here often to share your successes, your fears, your raw emotions or whatever you want. We are over 8,000 strong and here for you as you will be for others when you emerge on the other side of treatment. Water is your friend and a minimum rule of thumb is weight in pounds divided by two in ounces of water. Our body is 60%-80% water, depending on tissue or organs and water will be with you for life now as it should be. Just consider yourself to have a personal water meter now and this will make much more sense later. Don't worry about the million "what-ifs" because it isn't so until they prove it. Take time to MAKE THE MEMORIES as there will be fun days and those memories will help you through the roughest days after treatment.
Best wishes for the medical team you choose to find not only the best possible course of treatment for you but to educate you on longer term management of side effects!
Dream big and may all your dreams come true.
Ed
