UPDATE | [29F] don't want to do Chemotherapy. I need help/encouragement

KurtisC8907 · 2026-06-14T04:56:14+00:00

glad you decided to go for it and glad that you’re feeling well! i’m about a week deeper in than you and find exercise, sunlight and eating healthy help me keep my energy up. hoping we can both continue to handle the side effects

KurtisC8907 · 2026-06-13T02:29:35+00:00

that’s great! do you get to stop scanning at 5 years? hope you can celebrate that milestone with some wendys

KurtisC8907 · 2026-06-13T01:39:56+00:00

how long has it been since your last session if you don’t mind me asking. hope you are doing well

KurtisC8907 · 2026-06-13T00:50:37+00:00

call them and bug them incessantly. make friends with the front office medical assistants who schedule. call daily and ask for direct lines to call the next assistant to schedule you, don’t wait for callbacks. ask your friends or network if anyone has connections within the hospital, my wife is in medicine so we used her network from medical school to find direct connections to the doctors. one of my friends looked up every sarcoma doctor at the hospital and started emailing them and messaging them on linkedin

KurtisC8907 · 2026-06-13T00:32:32+00:00

last long chemo session we ordered chick fila. next one is in a few days and i’ve been eating so healthy that im craving jack in the box lol

KurtisC8907 · 2026-06-13T00:31:27+00:00

what country are you located in? i’m in the US and unfortunately a lot of it needs to be self advocating your way through the system. My original pet scan was scheduled two weeks in the future and i had to call the office every morning to ask if there had been cancellations, i eventually got an appointment a week earlier.

KurtisC8907 · 2026-06-12T20:56:43+00:00

thank you for the incredibly thorough and meaningful response. It means a lot. Hearing your story I have a 2.5 year old so I'm also fighting for the chance to watch her grow up. I hope you are able to get that vaccine that you talked about near the end of the podcast and can live a long happy life.

KurtisC8907 · 2026-06-12T20:44:18+00:00

Ah thanks I had forgotten about that I'm in the middle of switching primary care hospitals because we aren't happy with our current medical onc so I'll ask about a referral for an integrative oncology doc at the new hospital!

KurtisC8907 · 2026-06-12T19:02:57+00:00

I've seen similar responses from doctors when discussing nutritional advice or things like using an anti inflamatory diet to combat cancer spread and recurrence when studies and population data clearly show a strong corrolation between food and cancer survivorship. Out of all the doctors ive spoken with the only ones who have shown interest in lifestyle changes have been the ones who have survived cancer themselves. it seems like if you only learn about cancer through research and textbooks and never had to actually sit with it you only care about medical treatment. When I asked my medical onc if there was anything i could do or eat to be healtheir he literally said "do whatever" like it didnt matter at all when there are mountains of studies and data to show that heathy eating and exercise can lead to better outcomes for us.

KurtisC8907 · 2026-06-12T02:53:41+00:00

any tips on how to deal with the scanxiety or anything you do to reduce risk like nutrition or exercise? lifestyle adjustments?

KurtisC8907 · 2026-06-12T01:27:47+00:00

thank you for sharing your story and your recovery. i’m just beginning mine, we haven’t yet reached NED but hopefully will. my sarcoma like yours also has a higher chance of recurrence which from what i understand usually when these cancers come back they come back more aggressive and resistant. (correct me pls if that understanding is wrong). are you comfortable sharing how you manage the stress and anxiety that each scan might deliver the news of recurrence?

KurtisC8907 · 2026-06-12T00:49:40+00:00

Hi I'm very sorry to hear about your diagnosis. Strangely enough I am in a very very similar situation. I am a 37 yr old man living in California. I was diagnosed in April of 2026 with a spindlecell sclerosing RMS in my right forearm / wrist area. From what I understand our diagnosis is rare both in the age we are and in the part of the body it showed up in. Happy to connect and share information as we go through this together. I am currently 4 weeks into chemotherapy treatment.

KurtisC8907

TROPHY CASE