Radiation and Insurance (Medicaid) Nightmares: Breast Cancer Treatment in Your 20s

My God, what a story.  I can't believe you've had to deal with that horrible insurance issue on top of everything else you've had to cope with.  This country's healthcare situation is shameful and your experience is a perfect example of why things must change.

 

It's is an incredibly lame thing to say but I hope they reinstate your insurance.  I also hope that you get through the rest of your radiation without too much more misery. 

 

I'm so sorry you've had to go through these latest difficulties but I'm glad you shared this part of your story.  The good, the bad, and the ugly. That's what this site is all about.

 

--Laura 

reply

Natalia,

I am so sorry sweetheart that you are having that reaction to the radiation. I do however have some suggestions for you on meds. There is a program for prescription assistance that Montel Williams is a sponser of. The phone # is 1-888-477-2669 & the web site is www.PPARx.org if you have access to a computer. I also know that the drug reps bring by samples so ask your doctor for some. Get on this right away ot sounds like you will definetly qualify. You can also write the Department of Insurance in your state about the insurance company who has dropped you if you don't get a reasonable answer for what they did & why they did it. I know you are fighting for your life but you have to continue to fight to live.

 

Come on girlfriend I know you can do it!

Love & Prayers

Vickie

reply

Natalia..That sucks!!!  I am so angry for you and I don't know what to say...I don't understand why wonderful people like you have to deal with this kind of ----.  I am here for you no matter what....If you want to talk I am here so just contact me through this and I will give you my digits!!!  Much Love Sharon
reply

But, Natalia, you're a poster child for what's wrong with this country's medical system. A very few people have SO much, and many of us have just barely enough, and then some have nothing at all. Not right.

I didn't have any skin issues with radiation, so can't help  you there. I do know that Komen for the Cure has funds that they portion out to hopsitals offering breast cancer treatment, to be given to women like you who really need help. Maybe ask the social workers at your hospital if there are Komen funds available?

I'm sending good karma and prayers your way, Natalia. Stay connected here - we're all joining hands to pull you through this, and to help you get up when you fall. God bless you- PJH

reply

Hi Natalia

My name is Michelle. I live in Australia. You know, I have seen on Oprah that movie guy Michael Moore that made that movie "Sicko" which is about the American Health system. I am 35 yrs old and got diagnosed last year 3 months before getting married. Anyway my story is no better or worse than anyone elses here but I cant believe the way your health system is. I know there is probably a lot of things said about the Australian health system, but I can thankfully say that if you need to have life saving treatment here you will get it, with or withour private health insurance. Actually I was having this conversation yesterday with a friend of mine from chemo. She has private health insurance. I also have health insurance, however I joined last year two weeks before I found out I had cancer and they said that even though I didnt know I had it when I joined it was still there and I would have to wait the 12 month waiting period to start using it. I was cranky about this but now I realise I dont have a right to be. We were comparing our experiences as a private patient and a public patient. The main differences were that for example when we had our ports put it, she was in a private hospital and she was put to sleep. I was in a public hospital and I had it done under local anaesthetic. I guess the main differences are that she may have been more comfortable in her experience. And it has cost her almost $2000 for her treatment so far. I have not paid anything except one bill for my chemo so far that was $125. I have now started on tamoxifen as of yesterday which will cost me $30 every two months. Basically my point is though that who cares if I wasn't as comfortable as her and we didnt get sandwhiches offered to us after the operation. Those things are not important. What is important is that everybody deserves the opportunity to get better from any medical condition with the best medical treatment available. I dont know much about politics but I cannot understand how goverments will not do something to help the very people that get them elected in the first place. I am amazed that in this day and age they can let something like this happen. I am also having herceptin at the moment and that has only just been put on the PBS list here (Pharmaceutical Benefits Scheme) which means medicare can cover it. But I know of one lady here that had to pay over $3000 every 3 weeks for her treatment before it was on the list. I asked my husband what we would do if it wasnt on the list yet and he said we would have to sell the house. But what about the people who dont have a house to sell? I guess you could go on for hours but at the end of the day all any of us want is the best chance to get better. I hope you are able to get this sorted out and I am sorry that you have to worry about this when you need your strength for more important things at the moment. I enjoy reading your comments and I pray that things wilol work out for you.

God bless to eveyone.

reply

Natalia,

 

The last part of radiation was really hard on my skin too, and it was painful.  The radiation nurse worked with me to find good dressings to cover up the prescription cream I applied.  Unfortunately, it will probably get worse before it gets better, but it sounds like they are watching your skin carefully.  My doc said my skin was holding up well, which I found hard to believe, because it looked like a bad blistering sunburn.  But radiation really makes a difference in survival rates, so it's worth it to hang in there.  The most discouraging thing about radiation was that I continued to feel worse for about two weeks after the treatments were over.  The doc told me that would happen, but it was still hard to accept.  I had my last radiation treatment Jan. 15, 1999.  It was the end of eight months of chemo, surgery, more chemo, and radiation, so I was ready for it to be OVER.  

 

Stay in close touch with the radiation nurse, and use those creams faithfully.  I hope all the insurance details work out.  I had a change in my insurance Jan. 1, 1999 and the new insurer didn't have my radiation oncologist and the hospital on their list, so they wanted me to change midtreatment!  We worked it out, but no one needs the added stress of dealing with those folks when they are fighting to stay alive.

 

Phyllis Johnson 

reply

Yes the insurance situation is not good, but keep at them no they don't care but I care all this money that people give to aids and research for cance should be given to those who are trying to live but instead women are fighting two battle one with the cancer and two with trying to get help God Bless America! where else in the the world that you would have a hard time but in your own country.  we can provide money for wars but, not care for our people. I care for all those who are not being treated fairly or afraid.  My hope is you continue to be a good trooper and may you be blesse with gift to give back this love and kindness you have in your heart because you are an angel and angels are beautiful and kind hearted for me don't give up.
reply

Natalia,

I am so glad you decided to let everyone know the not so pretty side of cancer.  We all just smile when someone asks "how are you today" - when you really want to scream "I just had a mastectomy, I can't feel my arm, I've started chemo and my hair is falling out."  But we are all too polite to do that!  I watched my mom go through radiation and it was not pretty.  Her skin was sooo burned just after a few treatments.  It's something I am not looking forward to.  But you are almost there - you can see the end in sight.  Stay focused and you can get through it.  

 

I can not believe they cut your insurance.  Please talk with the social worker at your hospital - they have to have a way to help you.  They can't turn you away.  Check out my private sharepost to you.     

 

We'll get you through this because we need your help. Those of just beginning need your expertise!  I get my scans this week and my oncologist is going to wait to let me start my chemo after my son's spring break - at least I'll get a good week with him.  

 

Stay positive and keep us informed!

LOL

Tammy 

reply

I had surgery on both breasts in May.  After healing for 1 1/2 months and having fluid drawn out via needle twice, I was ready for treatments. 

Radiation was given to me on both breasts, every day M-F, for 8 weeks.  I was 47 years old.  I burned badly enough that I had to use prescription ointments and special moisturizing pads day and night.  When the skin peeled, it was in huge pieces, dark and discolored as you mentioned.  I never expected it to be as extreme, but I received great care from my Radiation Oncologist and his staff as I experienced more and more pain.  The skin pain subsided with time and lots of Aquaphor (over the counter ointment) but I lost all color to the skin of my breasts.

 

As for pain in the rest of the breasts, After 2 weeks the nipple area began stinging.  At 4 weeks it burned constantly and after 6 weeks I felt like there was a horrible balloon bursting from inside of my breast through my nipple.  I was miserable by the time I finished the final treatment.  I developed both fluid build-up and inflamation which needed to subside before I could begin Tamoxifen.  It took 1 1/2 months.  I've been taking Tamoxifen now since September.  Tamoxifen gave me symptoms of Menopause (Hot flashes, weight gain) but I have tolerated it otherwise.  I take 2 aspirin daily to counter clotting possibilities.  The hot flashes were almost constant for about 2 months before subsiding.  I am now 30 lbs heavier and trying to lose, but my metabolism has changed a little so it is tougher.  I still have pain in both breasts.  It is a constant sting and sometimes burning pain from my incision site to my nipple area.  The doctor said that some people keep this burning pain forever- or for many years.

I am describing these symptoms for anyone else who wonder if they are alone.  Not many of us know what is a "normal reaction" during radiation.  I feel fortunate that my cancer was found by Mammogram (it was not one that could have been felt) and that it was small.  Surgery and Radiation were not pleasant, but I'm relieved I had the chance for both.

Best of luck, Natalia!

reply

Hi Natalia,

I read an article in the Wall St Journal about 3 months ago where they discussed that out of 50 states there are only 3 that do not have this mandate for breast cancer patients. Most of the states on the East coast are mandated including NC which is where I live.

You might want to do a search in the WSJ archives or through your state Medicaid website. Maybe---let's hope it's a fluke this all happened.

At least you were able to get through your radiation treatment. I think my head would have exploded and then the white coats!

Debbie Buckner

reply

i also had the same problem with my breast going through radiation. They had to stop the treatment twice. I HAVE 5 TREATMENTS LEFT. My breast went from red to purple to black. The burning and pain are still there.  Thank God my husband has great insurance. I know what your going through with the pain and burning. They told me some women are more sensitive than others. I have met some wonderful medical staff through all of this . Without them I dont know what it would have been like. This has been really emotional and physical time in my life. God has been there with me every step of the way.

reply