Introduction

[spencoid2]

I am writing for my sister who is reluctant to communicate with anything other than facebook. Hopefully she will see the value in this forum. I have been subscribed to the advanced prostate cancer forum and have found it very useful.

My sister was having all sorts of symptoms including postural orthostatic tachy cardia. she blamed everything on the covid vaccine and long covid. She thought she knew more than anyone about this so felt there was no reason to go to a doctor. She has avoided doctors her whole life. Never had a colonoscopy.

She was admitted to the hospital when she crashed her car far from home and broke into the basement of a house. She remembers nothing of this. The police were summoned and she was taken to the hospital. She was found to have extremely low hemoglobin so they looked for a cause and found a 4 cm colon cancer in a scan. I was able to convince here to have a transfusion and surgery.

I live on the West coast and she on the East so communication with her doctors has been nearly impossible. It has also been impossible to convince my sister that the vaccine did not give her turbo cancer. She is still a believer in just about any conspiracy theory.

There is mixed information as to whether all of the tumor was removed and if there is a likelihood of metastasis. Again I can not get information directly from the doctors and my sister can not be depended on to act proactively.

One oncologist recommended and prescribed oral chemo. My sister will not take it for fear of peripheral neuropathy. She is a musician and does not want to lose control of her hands.

She still has a colostomy after maybe 6 months and it is unclear when they will re-attach her colon. Also unclear if there is enough colon left to do this. One doctor (the surgeon) says yes and another says no. They have refused to do the surgery unless she takes chemo so she says she is taking it.

I would like to get a second opinion. Sister lives on Long Island NY so there are many centers of excellence if she is willing to travel. She has agreed to travel to the ends of Suffolk county and maybe a bit into Nassau.

I do not have medical power of attorney and getting it at a distance will be difficult.

Can anyone recommend a place to get a second opinion? Her surgery was at North Haven something or other in Bayshore maybe?

[StayingOptimistic]

MSK is in Commack, Long Island. She might want to try them. It’s a great place.

[spencoid2 in reply to StayingOptimistic]

Thanks I think comeback is close. It has been 50 years since I lived on LI but I remember the commack arena.

[spencoid2 in reply to spencoid2]

phone corrected Commack to comeback

[GCCA-Survivor Administrator]

Hi penecoid2,

You my friend are a good brother. I live in NC, but I got a 2nd opinion at Memorial Sloan Kettering Cancer Center in Manhattan in New York City. It's a cancer research center as well. A cancer research center is probably the best way to keep up with all the advancements happening in the cancer space. It would definitely be one stop shopping for a second or primary opinion.

mskcc.org/

I wish you all the best in helping your sister. I understand it's a scary time. In my fight, I would always say "you sometimes have to give ground to cancer, but always have a plan to take it back." Getting into a beneficial therapy may look like giving ground, but it's ground that needs to be covered and perhaps lead to a path of putting cancer behind her, and then focusing on gaining that ground back ... which would be her music👍❤️

All the best ... Tom