Got Invasive lobular carcinoma and my insurance dropped me!

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Moonray
Moonray Member Posts: 1
edited June 2014 in Just Diagnosed

Hello to all my fellow sisters...unfortunately, on 02/12/14 I found out I had ILC by reading the results in my car (I found the lump). The doctor was supposed to tell me and she never did...I was alone but not really scared...yet.  I have been on what I call the Booby Roller Coaster Saga since then.  Just a brief background: In 1982, I was in a car accident (rear-ended) and ended up in bed paralyzed to the waist for part of the time, unable to walk very well, amnesia, convulsions, etc for almost two years but managed to get back up 60 pounds later and severely depressed but managed to continue living. Since 1984 I was diagnosed with fibromyalgia, which further affected my emotional and physical conditions.  I avoided disability until 2010 when I broke my shoulder in March (fell off a horse...my last ride ever) and in July fell downhill at home and broke my ankle so badly I had to have it reconstructed with rods and many screws.  In 2011, I had to have all the hardware removed because my body was pushing parts of it out and it was very painful for a year. I have not been able to walk on the beach or dance since then but hope to be able to do a little of it some day. I found out I have osteoporosis, pretty far advanced especially in my vertebral column and hips.  I can't take anything for it because it burns me and hurts horribly but I am looking for options now. I do take 5000 u/day of vitamin D3, which is now at  a healthy range.

And now back to my ILC diagnosis...due to this positive diagnosis, I had many tests done and was started on Aromasin at my request over all the other aromatase inhibitors because the others had horrible effects on bone loss and myalgias or muscle pain (already live with that).  I became disabled and had to leave a very well paying job in a biotech pharmaceutical company to receive social security payments.  Two years later, starting on 01/01/14, Medicare kicked in so it helped me a lot. Nevertheless, one of my doctors (physiatrist) and the psychiatrist assigned to me by social security to validate my conditions, were criminally charged for fraud to social security disability.  The investigation is ongoing but it seems they are guilty until proven innocent!  As a consequence, my health insurance cancelled my contract RETROACTIVELY to 01/01/14 on 03/03/14 (without notification-found out when I went to pay the deductible at my MD!!!)  because Medicare had dropped me on Part A and you need both A and B to be insured. Here I am now, with cancer and no insurance!!! To top things off, I received a letter from social security last night saying that since part of my disability claim was supported by evidence provided by my physiatrist, it was considered FRAUDULENT! I meditated, breathed, tried to relax and to understand why they were being so unfair with the patients (I heard others were affected as well but with my cancer, it made matters worse). Now, technically speaking, I would have to pay all my meds and all the expensive diagnostic tests, including 2 MRI's, 2 Mammograms/Sonomammograms, biopsies, pathology, Onchotype etc. from out of my pocket! To top things off, my social security income was stopped on 02/01/14 and if the social security decides that I am a fraudulent case (puleeese!), which is already implied in their letter, I would have to repay about $30,000 for the time I received SS payments.  So now, I only have my work disability insurance that deducts the social security payments I no longer have and who kept me with no income for a year until I got my SS so they could pay me less...I would lose this insurance as well if it is determined that I did not "deserve" to be disabled...It keeps adding up...I need a PET-CT ($4000) to determine if there is metastasis and to obtain information used for my therapy/surgery decisions, which my doctors are all anxious to receive.  I will have it done out of my pocket as well unless I can get some government catastrophic insurance to cover it but time is of essence and it will take a lot of documentation and time that can't be wasted any longer. My Dad was hospitalized four days ago with bronchitis and suffered a small stroke while taking his wife, who has lung cancer, to the hospital...I have not been able to tell my Dad or his wife who live in Virginia that I have cancer because they will not be able to handle it and I have no one to help me there...My brother is in NJ but has not spoken to me for about a year for reasons unknown to me so I cannot ask him for any help with my Dad.  This is super stressful and almost sounds like a bad soap opera except it is real and has hit me very hard.  I am a very spiritual person and faith does move mountains but boy, what a Booby Roller Coaster Saga it's been...!I apologize for the venting to you all but I needed to get this off my chest...insomnia has kicked in from the Aromasin and my current situation. I have had a couple of good cries but it doesn't seem to stop...I hope it does soon because it is unbearable...

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  • Jennie93
    Jennie93 Member Posts: 1,018
    edited March 2014

    Oh my.  What a mess!  Prayers going out to you.  I'm wondering, do you know a lawyer by any chance?  Maybe someone in your church?  It sounds terribly wrong, what they are doing to you.

  • juneping
    juneping Member Posts: 1,594
    edited March 2014

    i am so sorry....i think jennie's suggestion is very valid, try find a lawyer. and can you back track and find your other doctors to support your medical claims??

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