Hi - I'm a newbie. My sister recently was diagnosed with cancer in her parotid gland (salivary). She has no money and no insurance which makes this all even worse. She did find a doctor who would do the surgery. I went with her to the post op and he said it was a high grade tumor - I think Adenoid carcinoma (not sure of the spelling). He said he found the cancer in one lymph node and recommended she start radiation in a few weeks. He didn't talk staging and I didn't know enough to ask. The only side effects he mentioned when she asked was dry mouth and he said fatigue wouldn't be a problem. She is self-supporting - does heavy lifting in a gardening center. From what I'm reading, she's going to be unable to work. Is this correct? Isn't fatigue a huge issue? And should she wait a few weeks to start radiation? I just didn't feel like he felt anything was urgent at all. Also, she's extremely thin and I'm worried she'll lose even more weight after this. She's continuing to smoke because he said this wasn't caused by that. I told her she HAS to quit to help her immune system fight this. Any info would be appreciated!

I am sorry to hear about your sister. There are many programs out there that can assist her one being the American Cancer Sociey and the United Way. Most health care facilities now go by the Government salary base and many get free treatment and many pay less based on their income.

As for smoking he is worng that it will not hurt her. She needs to stop as soon as possible and it will not be easy. I stopped three months before my diagnosis and was told by my Oncologist it was the best thing I could have ever done for myself as continuing to smoke after treatments would almost give me a 99% guarantee that the cancer would return within one year.

Everyone I am finding out has different side effects and at different strengths. My doc said I would get tired in 3-4 weeks. I got tired in 3 days. I would get on the horn call the ACS and let them help your sister. They know all the programs etc. that she may be able to apply for.


Gary should be in here soon and he can give you tons of advice on this. Hang in there. We are here for you.

May God give you strength,
Barbara~

Hey, Robin, I'm in Colorado too. I don't know where your sister is being treated at, but I do know when I started with the cancer center I received treatment at, the doctor mentioned that they often take on cases where people have no insurance.

It doesn't make sense to me that the doctors haven't convinced her to give up smoking. I don't even know how anyone can get through radiation or chemo and continue to smoke. From personal experience, I was so ill from the treatments that it was the furthest thing from my mind.

As for heavy lifting. In my own case, since they put the PEG tube in six months ago, I can't lift much at all.

Depending on what your sister is going to need for treatment, she might experience fatigue, weight loss and all the other things many of us have gone through. Everybody tolerates these individually. I was amazed when my radiation doctor told me about a patient of his that never had a lack of appetite and was still eating hamburgers all the way through it. Totally blew me away when I was at the point that I couldn't seem to keep anything down.

Jen

Thanks so much for your answers and encouragement. She doesn't qualify for Medicaid in Colorado because she doesn't have kids (go figure). I'm having her apply for SSI tomorrow. The ACS was wonderful at providing info on the cancer but had no suggestions for financial aid. What cancer center has a program for those with no money?? I was going to call the Rocky Mountain Cancer Center tomorrow. We're in Colo. Springs. Memorial did the surgery and hasn't started billing her yet. Don't know what will happen when they do - she is relying on my mom's help just to pay rent right now but is going back to work tomorrow. ANY ideas about financial help or care is so, so appreciated! You are all amazing!

Robin, I'm in Longmont (close to Boulder)and although I got diagnosed here locally by an ENT at the clinic, they immediately referred me to University of Colorado, Anshcutz Cancer Pavillion in Aurora. This is quite some distance away and usually when we have appointments I spend several hours in the car.

I do remember at the beginning of this awful saga, sitting in the radiation oncologist's examining room and remarking to my husband,"Well, thank goodness we have good insurance" One of the most terrifying aspects of this disease is the BILLS. Even with decent insurance (we had just recently changed to a better plan because of dermatoligist needed for my daughter)I was still very frightened of the cost aspects. Then again, being somewhat of a bleeding heart, I suddenly realized what journalists were talking about when it comes to lack of accessibility to health care in this country.

To make a long story short, my radiation oncologist (who had spent alot of time with me convincing me that they had some top notch cancer specialists that come from reknown institutions like MD Anderson, Mayo, etc) tapped me on the knee and told me "Look, we treat people here without insurance all the time" (that made me feel a little bit better, just knowing that other people weren't locked out of the system)

The bills, unfortunately do start coming. In my case, they started pouring in about several months after I started treatment. Great big piles of them.

As far as financial help goes, since I haven't been in this predicament, I have overheard the scheduler at my ENT's office telling another patient to contact "social services" Wherever you go for treatment, I would contact social services at the medical center. They might be the best place to hook up to financial help.

Jen

Jen: Thanks so much. I keep worrying that at some point they're just going to tell her "no - you're out of luck if you can't pay." She has no house, no car, and is barely subsitting as it is without medical bills. I've been encouraged so far by the fact no one has demanded she pay before being treated.

Good News: Just wanted to share with you all that I spoke to the social worker at the hospital where my sister had her surgery. She was absolutely wonderful. She said that my sister had misunderstood and the indigent care program of Colorado was indeed covering her surgery and would also cover her radiation. In addition, Memorial Hospital of Colo. Sprgs. has a fund that was set up by donors to help with living expenses for people in my sisters position. I'm going to have her go ahead and schedule her first appointment for radiation. I've seen things about seeing a dentist before hand. Does anyone know if this applies to radiation on the salivary glands as well? Is this something they'll talk to her about at her first appointment? And could anyone give me info on what to expect at the first few treatments? Sorry for all the questions but this is all so new!

I am so glad that the social worker cleared things up for you. I tend to listen alot to things going around me and I felt so bad for the young guy at the ENT's office that did not have insurance.

Nobody on my medical team urged me to see a dentist beforehand. However, thanks to several people on this forum, OCF, I took it upon myself to have my teeth all checked out and cleared before I started radiation. I ended up having to see a dentist I had never seen before because I wanted to get it done QUICKLY and get it out of the way.

As for the radiation on the salivary glands. My mouth got really dry. I experienced what alot of people here experienced... nasty mucous attacks, and I'm still having dry mouth problems. Happy to report though that I was able to eat a Sonic cheeseburger yesterday and things are improving.

The first couple weeks of radiation you wonder what the big deal is. It catches up to a person by the end and extends for awhile afterwards. Everybody's mileage may vary.

Good luck to your sister. I would suggest that she find a dentist right away and get her teeth all checked out. Glad to hear the social worker visit worked out so well for you.

Jen

Jen:

Thanks for the information. How long after the radiation ended for you were you able to start eating again normally?

I'm so glad things are getting better for you!

Robin

My radiation ended mid March and I had additional surgery with a neck dissection in mid April. For the past three weeks or so I have echewed the tube feeding and have been determined to eat as normal as possible. However, "normal" to me would mean how I use to eat before all this stuff happened. I sometimes have issues with bread and potatoes. Saliva has it's good days and bad days.

Quite a few of my BC (before cancer) calories probably came from soda as it use to be my drink of choice throughout the day. Now, I can barely handle a sip.

Otherwise, anything I can attempt to eat, I most definitely try, but it's only been four months after treatment ended and I had to really PUSH myself. Everybody is different.

Jen