Radiation and Insurance (Medicaid) Nightmares: Breast Cancer Treatment in Your 20s
Hi everyone! I am 18 days into radiation treatment for metastatic breast cancer, and it has taken a turn for the worse. I have been debating whether I should share my story with you guys or not, because I don't want to scare anyone that will be getting radiation, but I decided that this site is made for us to be able to share information, and if we don't keep things real with each other, then who will? Plus, not everyone reacts the same to radiation.
Radiation Treatment for Stage 4 Breast Cancer in My 20s
When I first started my radiation treatments everything was fine. I go Monday through Friday for 15 minutes each day. Just last week I started feeling a burning sensation, and I noticed that my skin was changing big time. I know that it is normal to have a change of color and irritation, but it looked too weird.
During the next few days I looked at it again, and it was pretty gross. My skin and especially under my arm looks like salami, seriously SALAMI!!
It is reddish and purplish with dark almost black spots all over. I asked my doctor to take a look, and it turns out that I'm having a bad reaction to the radiation. There is this thing called bolis that they put on my chest when they apply the radiation, and it actually brings the radiation to the surface, so it is making my skin raw.
They have decided to use the bolis every other day to see what happens. They have also given me a prescription ointment that I am to apply 4 times a day to try to help my skin. I have 7 days left of radiation, and I'm scared that my skin won't hold up. It is also becoming pretty painful to wear my bra and my shirts, so I have been staying home a lot so that I can be comfortable.
My Insurance (Medicaid) Dropped Me "Like a Bad Habit" --In the Middle of Breast Cancer Treatment
Also since my salami-pepporoni-pizza-looking skin isn't enough, my insurance decided to drop me like a bad habit without even letting me know. I was on my way to radiation, and the front desk let me know I was no longer insured.
I had a wonderful panic and sob attack in front of like 15 people, and during the radiation treatment, because of the shocking news, everyone thought I was going to faint. I had black mascara running down my face since I had gotten all dolled up for a lunch I planned for after treatment... it was horrible.
"Now I'll Die for Sure Because I Can't Afford to Have Cancer"
Cancer treatments are so expensive, especially radiation, that a million things started going through my mind. I kept thinking oh my god what am I going to do, now I'll for sure die because I can't afford to have cancer. The receptionist calmed me down and assured me that, with insurance or not, I would still have my treatments and that no one would cut me off of getting medical help with money or not and that there are places I can call.
Just to give you guys some background on what's going on, when I got cancer I was 26 years old and didn't have insurance, so I was able to get Medicaid due to the seriousness of my illness and basically having low income. I thank God that things like Medicaid exist because I don't know what I would have done without it.
Someone told me that with a stage 4 (metastatic) cancer you are considered disabled because you cannot work. I have never been a person to take advantage of any situation, I have worked hard all my life, but I had come to a point where I couldn't even walk. I went to Social Security and declared my case to try to get assistance. They agreed to help me. They calculated all the money I have made throughout the years I have worked and from that they give me a percentage of money.
It turned out to be a very low amount, so low that thank God I have my family who is helping me out, because I would starve and they also switched my insurance to a better kind of Medicaid but through Social Security. I had the new insurance for about 2 months, and now I found out that they dropped me.
I called my old case worker from the original Medicaid program and asked why, and she said it was because Social Security was giving me some money. I told her that I would rather not get a single dime, but please give me back my insurance. She said to have some forms filled out by my doctor stating that I'm still receiving treatments for breast cancer and then she would reinstate my original Medicaid.
Hoping Things Work Out with Insurance So I Can Afford Tamoxifen
I can't tell you guys how much I cried over this ordeal that is still going on. My doctor faxed the info, and now I'm waiting to be put back on, hopefully. I had to buy medications the other day and it was $150, and next week I start my Tamoxifen (chemo in pill form) for 3 months and the pills are pretty expensive, so I hope I have my insurance back by then.
What It's Like with Breast Cancer Treatment When Doctors Don't Accept Medicaid
It really hurts me that people can be so uncaring about what we go through. Its hard enough to deal with cancer, then they take the only thing that is saving your life away with no hesitation or reason. It's bad enough that I don't have good insurance, because many doctors do not accept Medicaid, and it's hard to get them to approve things I need to have done, like MRIs and cat scans, we have to beg and convince them that it is a necessary procedure, and they just take it away from me.
Sometimes I feel like how much more can I take mentally...? I'm so drained. I feel so alone at times like no one understands me, and I was telling a friend of mine on this site about how I have been feeling lately, but then I log on to this site and read others stories and victories or struggles and I start to smile again, and I feel happy that I'm surrounded by people who understand me and want to help.
Why I Share My Breast Cancer Story
I tell you guys my intimate stories because you guys don't make me feel embarassed, I feel comfortable with you all. I just wanted to let you guys in on what has been going on with me lately, and hopefully things will get better with radiation and my insurance. I have my fingers crossed, and I pray to God for a great outcome, because if not, I guess I'm going to go to a corner somewhere with a paper cup to raise funds for my ridiculously high-priced cancer treatments... LOL.
I also wanted to know from those of you who have had radiation, has this ever happened to you and does it get better?? I hope so because I'm in pain. Love you guys.