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Help for the uninsured, dealing with long term effects of treatment

Survivor86's picture
Survivor86
Posts: 18
Joined: Apr 2009

Anyone know of a long term follow up facility for the uninsured? I have been dealing with alot of health problems, I currently go to the local health department, and have been sent to several doctors that don't know about the long term effects, or how to treat me.

Thanks

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

I don't have any ideas for dealing with uninsured issues, but if you are at least getting seen by someone, most long term effect doctors follow guideline set up at:

http://www.cancersurvivorsproject.org/

There is more, and I will post some more later. Right now I'm on my way out the door, but I saw your post and wanted to let you know I'll try to help you out.

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

One more quick thing... it's not just about how to treat you. But it's important to be able to know what to look for, not just what symptoms you currently have. And then being able to determine if it's treatment related or naturally occurring. Any doc should be able to treat it from there.

Even those with insurance have health providers that don't beleive in late effects. It's only in the last year, that my GP of 20 years, finally has opened up to the concept because of my health issue last year, and what is currently being discovered.

More info coming...

Survivor86's picture
Survivor86
Posts: 18
Joined: Apr 2009

Hi Hodgkoid2003,

Thank you for the infomation, and its nice to talk to someone who went through the same thing as I did. What stage did you have? You have a beautiful family. I too am unable to have children, but have 2 step daughters, I don't get to see them much, my husband pased way 3 years ago, and now I live with my mother in Tennessee.

For me it just comes down to finding a doctor that will take the time to even research the late effects, The last doctor I seen flat out told me he didn't have time to, because he seen 20 patients a day, I have called 4 days in a roll to get my lab results and he won't even return my call. The oncologist that the Health Department refered me to, told me he didn't know that much about the late effects of the treatment I had as a child either(Chemo and radiation from my neck to my pelvis) even though I was the longest living survivor he had seen.

My mom has made me an appointment at Vanderbuilt Hospital May 8, they have a new survivorship program that just opened a month ago. There is a whole team of doctors that say they are looking foward to meeting me! It does come with a cost of $300.00, mom is also working on that to. I'm so excited to finally have doctors who understand and seem to care what I'm dealing with. They also said they are doing alot with stem cell, and would do everything to try an make my quality of life better.

I had my mammogram done at the local hospital, they found a spot on my left breast, the radiologist said it would be difficult to do a biopsy, because of my implants so they would check it in 6 months. I'm sure if I had insurance the biopsy would have been scheduled. They just don't get it here, I'm high risk for breast cancer! I also have nodules on my thyroid, and it feels like there is something stuck in my throat everytime I swallow. I recently obtained my records from UT, it was recommended that I have my thyroid checked every 6 months, this was 3 years ago, and no one told me.

It was people like us they used experimental drugs on not knowing the long term effects, both my parents had medical insurance at the time of my treatment, it was people like us that has made treatment better for those of today. My mother is going to get a foundation going for the long term survivors, she is suppose to meet with a group at Vanerbuilt Hospital.

Take Care,
Survivor86

chris87
Posts: 1
Joined: Sep 2009

Hi my name is Pam and I am the mother of Chris who was diagnosed with hodgkins lymphoma when he was 20. He has just turned 22 and has been in remission if you can call it that fora year he had his last radiation treatment on his 21st birthday! He had stage 3b so he had the chemo and radiation. My son had and still has no insurance we advocated for him as well as his drs. for medicaid or govt. assistance all to no avail. So the gov't is so screwed up we would let him die in a year than treat him. He has a great doctor he owes nothing all his pet scans and treatment have been paid thru charity programs. I made it my mission since he had to go thru this terrible disease at this age he was not going to be saddled down with debt. I know we live in NH they have a catastophic illness program that helps with prescribtions and pays for some drs. bill but you have to apply annually. With gov't cutbacks who know what they will do. My son for the last 7 months has had a hip problem that got continously worse and affected his walking. took him to the er since he has no primary dr. was told pulled groin muscle stay off it will get better. It didn't there was no xray done on him i brought him back last week to er demanded xray was taken but told him to take the steriods they prescribed and told him to go home and ride a bike he has a possible torn hip muscle. My son went thru cancer treatments like a trooper never got sick etc. but this pain was unbearable. Radiologist read his xray he had a fractured right hip and avascular necronosis which is no blood going to his hips so his bones are deterioration has to had a double hip replacement at the age of 22. He is a football player lives for the game and was told now never run again. This is due to the high steriods he had from chemo. All i can say is advocate for yourself demand tests i sometimes think because of no insurance they don't take the extra step. He saw his oncologist(a new one in Sept) I told him about his hip he wouldn't take a exray also stated pulled groin muscle. Now mind you he used to be 198lbs stocky and well built down to 163lbs. in four months because he was in pain 24/7 how do you not see drs. not checking for late side effects even if you have a clean pet. Bells should have rung in this drs. case because it happens to young survivors. You have to fight for yourself and your health. I think sometimes the cancer part of treatment is not as bad as the after effects. We need to advocate for health insurance for everyone with no prexisting conditions. You are a strong woman you will survive Hope you have luck!

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