As caregiver, I have been to this rodeo 13 years(?) 2006-2007 when my then hubby had radiation, chemo, 53 hyperbaric treatments. He got a clean bill of being cancer free 2008 from the Stage 3 tumor of the right side of the tongue. After 5 years, 8 months of marriage , 2010 we divorced. Due to the astronomical medical bills, and his almost homelessness living situation in 2014, I had him move from Jersey to Virginia to live with my adult son and myself.
In October 2018, the new oral cancer was found only this time, the left side of the tongue. October 19,partial glossectomy and removal of some lymph nodes. This newest sarcoma is acting out with a vengeance. April 8, next week, its back to Jersey to see his original surgeon. Options are limited now since receiving radiation again is not an option. He is almost 61 years old now, I am 64. The stressors are much worse so I am back on the forum trying to stay positive and be a good caregiver once again. Emotions are running high. As far as treatment...who knows. The pain meds help, however, they are cause for concern also. Re: addiction.
It helps to write all of this down. This afternoon, I reviewed the psychological steps...denial...anger...etc. (on both our parts).
I still remain HOPEFUL.

I’m sorry for your troubles Hopeful55!

I’m not as familiar with sarcoma as I am with my own type of Squamous Cell Carcinoma of the head and neck.

Have you looked into immunotherapy? I don’t know what type of sarcoma’s their used on, but understand it was first used on some type of sarcoma early on.

Can they do re-surgery without too much debility?

I’ve had radiation 5x to the same area with three different types of radiation: IMRT, IORT and Proton Radiation.

There are different types of radiation. Proton Radiation, which I had, is fantastic. There are two locations in NJ. There is also implant radiation (brachytherapy), which name escapes me. Some type use radiation seeds and other rods.

There is High Dose Intraopertive Radiation which I had, HD-IORT, that is used by a few radiation oncologists and surgeons.

There is another type radiation used for small depth cancer, which name escapes me. Was used in Buffalo, NY at Roswell Park. It’ll come to me later on, and will add it.

I hope this helps

Thank you. Next Monday April 8, 2019, we will travel from Virginia to NJ to see the doctor who treated Richard with his first bout with oral cancer in 2006-2007.

If you’re going to be close by nyc there are a number of top doctors to see at top hospitals. That’s where I go. They also have Hope Lodge to stay at in nyc for those living out of the area to far to commute, and can stay there for FREE, if available. It’s comprable to a top hotels! They have 69 guest rooms on west 32nd between 6th and 7th. I stayed there for two months of treatments, some others 5 months or longer.

Top hospitals in nyc, mainly manhattan, and I was treated at three of them:

NYU
Memorial Sloan Kettering
NY Presyberyerian
My Sinai
Lenox Hill Hisoital
Beth Israel Union Square (now part of my Sinai)
NY Eye and Ear

Good luck with the dr visit.

Monday is the big travel day to NJ to see the doctor who cared for Richard in 2006-2007. Driving from the Eastern Shore Virginia where we now live, up to NJ via the Cape May-Lewes Ferry in Delaware. It's an overnight mini vacation--jaunt.. LOL. The doctor we're seeing is a talented and caring man. We need his opinion as to what the situation really is.

Prayers the trip has good outcome. No matter what, take time to enjoy each other before beginning the next journey.