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New here with so many unanswered questions

bowdora
Posts: 3
Joined: Jan 2013

Hello-
I am new to this sort of thing. My husband woke up on June 4 and had to be rushed to the ER. He was given an ultrasound that showed a mass on his right kidney. After more testing, it was determined he would need to have the kidney removed. On the day of the surgery I recieved a phone call from the rehab center my father was at staying at, he was being rushed to the same hospital because of breathing difficulties. The surgery was expected to take 2 to 3 hours. It took 5, the tumor was very large and difficult, they knicked the vascular vein and had to call in another surgeon to repair it.
After getting my "superman" into recovery, I was able to go check on my dad. He was in isolation sue to an colon infection After talking to Dr. and family I was told to limit contact with Dad and concentrate on superman. He lost a lot blood and was very weak. I was able to get a cot put in his room to stay there. I spent 2 days going from room to room. I lost my dad on the 9 of June. The next 5 days are a fog to me. I was busy doing funeral arrangements and trying to keep peace between my sisters [long story] My father had been living with my husband and I for about 8 years because of his health. Needless to say during that time Tom was getting reports back, talking to Dr's. Although he is the smartest person I know, he doesnt handle health issuse good, didnt ask questions. We left hospital without any knowledge of RCC. I didnt know his stage or even if it was cancer.
we were told at the 2 week check up that it was indeed cancer and it was encased to kidney, See you in 6 months. No Onocologist was reccomended. In Dec we went back to surgeon and were told that upon further review it was determined that there were 3 spots in fatty tissue around kidney area. He would need to see an onocolgist. ct scan was scheduled. tom had a severve reaction to the dye and the scan couldnt be totaly completed. the onocolgist then ordered a pt scan and mri. Those results showed a small node in rught lung and the spots in fatty tissue were calcified. Go home and come back in June. I was told that he has stage 3 RCC. I still have so many questions. any answers or advice on what to ask or where to go? We have no insurance and can not get disability or medicade. we own a one man [ supermans} body shop, and our home. As tom puts it " 2 rich to be poor and 2 poor to be rich"

icemantoo's picture
icemantoo
Posts: 1837
Joined: Jan 2010

When I was first diagnosed (just before Memorial Day 2002) there was little promise for a long life where the RCC has spread. Take some time and read the stories of Fox, Tex amd others who despite difficullt diagnosies to start with are fighting back with new medicines and treatments and living as normal lives as possible.

Hopefully the Obamacare will turn into Universal Health Care. It does not effevt me as I am on Medicare, but I do care about others out there faced with lack of insurance or funds to get the best care possable.

Sorry to here that you had to deal with 2 crisies at once.

Hopefully the Oncologist will be able to find the right medications and treatment to get your Superman better.

Icemantoo

AprilandChuck's picture
AprilandChuck
Posts: 105
Joined: Feb 2013

Depending on your state... most of them.. will pick up Medical expenses through Medicaid after you meet a deductable depending on your income...my husbands deductable was around 13,000 dollars.. and hospitals will work with you on that...I am not going to ask personal information... but I can tell you I have run into other Cancer Patients with decent incomes and even some with insurance that Medicaid is helping Cancer treatment is expensive...So chin up.. check into your local and state resources... Help is out there you just need to look for it!!

bowdora
Posts: 3
Joined: Jan 2013

LKidd
Posts: 37
Joined: Feb 2013

Hi - I am sorry to hear about your Dad, and about not only your husband's situation but the difficulty in getting answers, help and financial assistance. I think the advice to read some of the stories here with regards to difficult diagnosis, there are stories of success and people here living with cancer quite well. As far as the care. I would be aggressive and get it handles as quickly as you can to limit the disease damage and possible spreading. Ask a lot of questions, even write them down ahead of time. Call them if they don't call you, and seek the care yourself rather than wait. If one doctor doesn't work get another.

I would definitely work with the hospitals or doctors, usually they are willing to work with you on payments or installments, or even discounting the cost, and you could add medicaid assitance into that. You also could look for insurance assistance on top of that, there are a few insurance companies out there that allow pre-existing conditions. Not many, but that could supplement some of the cost. You could use all 3 and get decent assistance. Good luck, continue to see answers and info here, the support is great.

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