How do lifestyle factors and exposure to environmental substances affect our cancer risk?
by soangry on Sat Jun 09, 2012 03:03 AM
My brother was diagnosed last year with a GIST tumor deep in his stomach. He went through the surgery to remove it. No medications were given other than antibiotics and pain meds once he left the hospital. He had his 6 month PET scan and all was clear. Now the results of the second 6 month PET scan and he has metastatic liver cancer, soft cell sarcoma. Dr. said not operable due to number of lesions. He goes for biopsy in 1 week.
I have tried to explain seriousness to his wife and children (they are all grown). I have tried to push for them to contact a specialist in the field of GIST/Sarcoma. I have tried to let them understand time is of the essence.
I'm so angry that they just seem to be waiting for either everything to be OK or everything to end without doing anything in between. They get angry with me when I try to steer them on course to what needs to be done. Like I'm butting in or blaming them or something.
This is my BROTHER! He needs someone to help him find a doctor that will put him on the right medications NOW. He was never put on Gleevac and it appears that he should have been, that it may have stopped or slowed down the mets to the liver.
What am I supposed to do? Do I just take over and start making appointments and insurance questions and doctor visits with him? I am at my wits end and have no more patience for any of them because they are acting so stupidly. I have names and numbers for the specialists, I need the insurance info to see if they are covered to see them, it's like trying to pull teeth! What can I do to get them in gear to help?
Please let me know your thoughts and if you have dealt with this.
by PopPop on Mon Jun 11, 2012 11:46 PM
Wow, this is a rough one in a sense. You are in between a rock and a hard place. It is your brother and he is the one with the final say in all this. His opinion is the most important. You should talk directly with him and see if he wants to seek a second opinion, which many of us would do anyway.
You can then ask him if he wants you to handle some of the appointment scheduling as he might have allot on his mind. As you mentioned, you would need his insurance information, etc. If you try to go ahead and do this without his permission, he may not show up for the appointments. Try to be there at the appointments if he wishes you to be present and ask questions that he might over look.
I was lucky as my wife was very pro active and with me at all my appointments in seeking information about my Base of Tongue cancer.
My Best to You and Everyone Here
by Denny1971 on Tue Jun 12, 2012 07:16 PM
One of the biggest things to a cancer patient/survivor is their support system. It seems that you are the base of that system at this time. Sit down with your brother and give him the information you have discovered and let him weigh it out. As PopPop said, the final decision on any treatment is sloely up to your brother. The best thing for you to do is be there for HIM. Hopefully the rest of the family comes around. God bless.
by soangry on Wed Jun 13, 2012 03:32 AM
Thank you for the replies! My brother called on Sunday, not because his wife told him I had been calling for 3 days. At first he didn't want to talk about it at all but the more I kept it to facts and not so much directed at him he finally was able to talk about it. I spent 3 1/2 hours on the phone with him. I think we both felt better after we hung up. I'm going with him for the biopsy, he has agreed to seed the second opinion after we hear the treatment from his current doctor, he is worried. He said he has lesions on his pancreas, liver and spleen. I have a list of questions for his doctor, a typed sheet for him to sign and give them requesting 2 copies of all tests, labs, CT's, PETSCAN, pathology, surgery, discharge from the GIST and also the November scan and the most recent. I read we should have all this for the new doctor and also a copy for ourselves. His wife is still an idiot but I'll get around her however I have to.
by stbaz on Thu Nov 22, 2012 10:51 PM
Have you considered that your brother is terminal and that he and his wife are not idiots? Inoperable usually = terminal and maybe they don't want further "treatment." "Doing something" is not always the answer.
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Did you or your loved one seek a second opinion before starting cancer treatment?
No, but we got a second opinion after we started treatment
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