STEAM ROOM FOR ANGER

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  • nanette7fl
    nanette7fl Member Posts: 469
    edited April 2019

    I tend to break things down to simpler for my DH as he's just so overwhelmed with my having cancer. Then when he goes to appointments with me... like our 1st visit to RO and we discuss treatment you can see his anxiety building. He tells me sometimes less is more meaning he doesn't always 'want' to know. I saw this with his reactions to his mother's illness especially during her last 6 months... he couldn't comprehend it all and stuck his head in the sand. Now 9 months later he regrets that he wasn't more involved....

    Gracie I'm sorry your in pain and hope you feel better soon. As per the pain could you have slept on your shoulder in an odd position?? Please don't wait too long before you call your Dr.

  • Amica
    Amica Member Posts: 488
    edited April 2019

    I worked in a cancer hospital in the U.S.- we were open Christmas Day and every other holiday. That is at it should be --its hospital!

    Now I am STUCK in Canada. I had an important bone scan on April 18th, and the entire hospital system is "on Easter Holiday" until tomorrow the 23rd. That is an awfully long time to to wait for results, I am so anxious. Even if I get a hold of someone tomorrow it may take days to get cursory verbal results. To get written results take 30 to 60 days which is useless. I HATE THE CANADIAN HEALTHCARE SYSTEM. IT IS A BROKEN SYSTEM. I HAVE NEVER SEEN ENTIRE HOSPITALS CLOSE FOR HOLIDAYS.

  • april1964
    april1964 Member Posts: 223
    edited April 2019

    thank you wanderingneedle for your kind words... Nanette your hubby sounds like mine...


  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited April 2019

    amica odd that a whole hospital would close for Easter holiday. May you get good results. Stinks you have to wait!

  • runor
    runor Member Posts: 1,798
    edited April 2019

    Amica, hospitals don't close. But hospital departments do. Patients still get fed and tended, emergency room still make you wait 5 hours with your severed leg beside you in a garbage bag. But close? Not in the fullest sense of the word, but they don't book appointments for those days most times. Yes, the waiting is torture. My average wait time for anything cancer related, whether it be a test result or news of my next appointment was 3 weeks. Three weeks of hell!

    April - wow. Just wow. I have to be honest and say I wonder what kindness you think you're providing when you sugar coat or soft sell or down play or minimize your reality? Unless your husband is truly mentally challenged, stupid or suffering a neurological injury, we HARM OUR PARTNERS when we decide all on our own that they're too stupid to handle the truth. It's a vote of non-confidence. It's a sign of disrespect. It allows us to harbour resentment and let it out later, in ugly ways. It sows the seeds of discord. It comes back to haunt you.

    I say you have not let this go. You won't be able to. He brushed you off. He categorized your situation as 'not that bad'. He is either ignorant or in denial, either way, I say tune the man up. What he does with that truth is totally up to him. But then it's not your fault that you didn't lay all the cards on the table. It is, in my mind, extremely dishonest to not be plain and bloody clear with others who refuse to Get It! It might be something as simple as asking "Well, dear, just when will my cacner be, you know, real and deep? When it shows up in my brain or bones or lungs? Will it be deep then? Shall we reserve our concern and alarm for that and ignore the situation now? Please let me know how you want this to play out so that I may go along with your fiction." Ooooh - this makes me mad!

  • Lita57
    Lita57 Member Posts: 2,437
    edited April 2019

    Geez, April. I'm sorry. Skin Cancer is the NUMBER ONE CANCER, with a higher incidence than breast cancer, and it KILLS people by drilling down into the body and metastasizing. There are so many family members out there who either choose to "selectively forget" or just don't care about the truths of cancer.

    My Sis-In-Law once asked, "Aren't you done with chemo yet?" She KNOWS I am STAGE IV, and that means I will NEVER be done with cancer Tx until I actually go on hospice, or die from a heart attack or one of my brain tumors hemorrhages in my sleep.

    It's tough when it's your partner, tho.

    I know my DH knows I'm very sick, he takes me to my dr apps after all, but I still don't truly know if he really "gets it." I still try to cook (altho I have to sit at the table to prep vegetables and cut other things up), fold the laundry, and wash a dish once in a while. So in some instances he must think everything is just fine and dandy....but it's not. I can't bend over or do yard work, and I can't climb steps anymore either.

    My DD just wants to bury her head in the sand. I'm trying to get her to do more of the cooking, reminding her that I won't be here much longer to show her all my mom's Italian recipes and techniques. DD needs to step up to the plate and start doing more things around here besides just a little cooking, clean up her act, and stop turning her bedroom into a hoarder's paradise (or nightmare - she must have gotten the hoarding gene from my DH's mother), but it falls on deaf ears.

    And then I get ANGRY.

    And I yell and SWEAR vociferously because all the steroids I take for the brain tumors have totally changed my personality.

    And I don't apologize anymore. Why should I? It's not going to change anything. Being nice hasn't changed anything. Swearing and being outspoken hasn't changed anything. It doesn't matter anymore.

    So I just go on my merry way, and - - my daughter HATES this expression - - que sera. sera.

    L



  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited April 2019

    I mentioned once to my husband that although I appreciated how helpful and supportive he'd been during my Year of Crap, he seemed less emotional about it than I expected. He said, "You weren't in the car the times I've had to pull over and let it all out." Turns out we'd been protecting each other's feelings a bit. And we decided that it was absolutely okay to do that.

  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited April 2019

    Good reminder to thank those who help and support and it is hard to remember to do that when you feel crummy.

  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited April 2019

    Reading some of these posts makes me re-think if my "rant" is worthy.  No one has to read this, but I need to write it down. 

    I go back to work May 6 and should be able to get back to a "new" normal life. I have been home since my Surgery the first week in Jan. 2019. 

    The first time I had cancer I went to a local hospital for treatment.  It was 2003. I had a good surgeon, great medical oncologist and horrid radiation oncologist. There was no such thing as a "breast care co-ordinator." I received a list of medical oncologists, and the hospital only had one radiation oncologist. My doctors didn't communicate. I was awake for a surgery I should have been out for, but they covered my head with a sheet and no one looked to see if I was still awake. Eventually, I guess they realized it as I did go to sleep, but not before being traumatized.  I was burned very badly by radiation.  All in all it was a horrific experience.

    I was diagnosed again, in Dec. 2018.  This time I vowed to go to a cancer hospital.  I live within an hour of a city that actually has 4 very well known and established breast cancer programs. The hospital I went to ONLY deals with cancer.  I thought it would be great, but what I learned was that it wasn't perfect either, for the following reasons.

    ***Note, I was in shock at having cancer again.  I thought I was cured! It had been 15 1/2 years!  I didn't really accept it until well after my surgery!

    1.  It's big and there is a revolving door of patients.  I quickly felt lost in the numbers.  

    2. The doctors don't seem to care what I think, they "tell" me what I need to do! I wanted a BMX with no reconstruction. At my first meeting with the BS he said no, they don't remove healthy breasts! He immediately called in the PS who told me what reconstruction was best for me.  It was a done deal, that is what they were doing. I left with a bunch of tests scheduled and a list of films/reports I needed to get from former doctors. 

    3. I found out my surgery was scheduled by accident!  I happened to go on to my patient portal to check a time for an appointment, I found out I was scheduled for pre-admittance testing the same day! Never got a phone call  or email/text to tell me that. I looked at appointments for Jan and saw my surgery listed!  When I saw the BS again, he said something like, "lets see if your surgery has been scheduled yet."  I didn't tell him I already knew, I was so shocked that he didn't seem to know!

    4. I had a mastectomy with DIEP reconstruction. It was about a 9 hour surgery after which I was placed in a room with a woman who had just been diagnosed with pneumococcal pneumonia! The nurse asked me if I had that vaccine! Ummm, what about my visitors, what if I hadn't had it?  No one seemed to care. 

    5.  My follow up visits have lacked purpose. I saw the BS once, told to see him again in 6 months.  I have large open wounds on my breast from having prior radiation. My PS has done nothing about it.  They don't seem to care.  I have gone though hundreds of sterile gauze non-adherent bandages and I will go through hundreds more until they heal......if they ever heal?  

    6. I have my final follow up with the PS before I go back to work next week.  I expect nothing. I wish I could have billed my insurance company for all the care I have been giving myself.  The PS will just look at the wounds (if I even see him, last time it was the PA), and he will say the same thing he has said for months, "there are granular cells there, it will take time for the skin cells to fill in."  I stayed home from work an additional 4 weeks because I work in a middle school where I can't avoid getting bumped or worse, by students. The students are allowed to carry back packs etc and I change rooms throughout the day so I have to move through the halls too. I don't know when the PS will want be back for another follow up visit, but it can't be before the end of June.  I have no sick days left.  I have a feeling he will say 6 months too!  

    7. I am so worried that with the warm humid weather approaching that I will end up with yeast infections in my wounds.  I guess I will have to have my primary care doctor deal with that if it happens because my PS doesn't seem to care.  About a week or so after surgery and I broke out with hives all over my body.  I called the cancer center's nurse triage who spoke with my "team" of doctors and they told me to see an allergist!  I saw my PC and he helped me.

    8.  They set me up with a MO who of course prescribed Letrozole.  The entire visit, after she told me my Oncotype score of 21 meant I didn't need chemo, was about the side effects.  I wasn't supposed to start the AI until March, so I had time, but in that time I had questions.  I contacted the nurse navigator with my questions and was told she passed them on to the MO.  I didn't hear from her so I did my own research and agonized about it for three weeks. I finally decided not to take the Letrozole.  I cancelled my lab appointment and MO appointment which was scheduled for 4 months after my initial visit. I received a phone call that very same day from the MO, just a few hours after cancelling.  I was so upset I didn't pick up the phone, but I returned the call the next day.  I left a message with the person who answered the phone, told her I decided not to take the medication, told her why, that I cancelled the appointments and that the MO could call me back but that I doubted I would change my mind.  That was over a month ago, never heard from the MO again and I don't expect to.

    9.  I feel so lost in the system.  I plan to go back to work, and try to forget all about breast cancer.  I feel the doctors only think of me when I am in front of them, and even then I am not a person, I am $$$.  So, I am going to try not to think of cancer except for the few minutes I am in front of them!  I honestly doubt I will keep follow up appointments for long.  I relied on my gynecologist for breast health before this, she was the one who listened to me about the pain I was feeling in my breast and ordered the diagnostic mammogram and ultrasound. She actually cares about all of her patients.  I feel confident continuing with her.  I will see her in the fall, by then I might have a different attitude, but right now I am hurt and angry. 

    I was the first to have breast cancer in my immediate family. Within the year I was diagnosed, my 82 year old mother was diagnose as was my sister. My sister had both breast cancer and lymphoma at the same time and fought for nine years before she passed away.  Yesterday my other sister had a biopsy and we are now waiting for results. I am getting ready to do my 30 min walk, so hopefully the sun and fresh air will cheer me up.  I hate feeling down, but I feel I have no connection with the doctors and that I am totally alone dealing with this. I still want to know how women get BMX without having cancer in both breasts or being positive for BRCA 1 or 2?  Right now I don't know which I hate worse, the cancer or my doctors?  I feel stuck now, so I just need to get the note to return to work, then I will be free to do what I want to.



  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited April 2019

    I deleted my post, which was a VERY long rant, because I just needed to write it. Short version, cancer sucks and cancer care can suck too! 

    I should be rejoicing because I am so lucky to be going back to work soon, but all I can focus on is my doctor visit next week and how I feel rejected by my doctors. (doubtful I will even see my doctor, most likely a PA). I know I will feel 100% better once I get back to my job and the "real" world.  I didn't feel anyone needed to read my venting. 

    This community really can be a life saver! I am very thankful to be part of it.  

  • jaycee49
    jaycee49 Member Posts: 1,277
    edited April 2019

    Mavsmom, I read your whole earlier post. Very interesting and confusing. It is good to have it all written out to get it out of your system. I hope you saved it for yourself anyway. I usually write long posts in a word processor and paste them into the forum. It is also good for future reference. I save EVERYTHING. But as you noticed, doctors aren't interested. I sit with my phone in MO appts and say, "you want to see this?" No. I guess I have an unfair advantage being involved with the medical establishment for so long (30 years) due to my MS dx. I only see doctors who do what I want. Sometimes they have to be trained (if they are trainable, some are, some aren't) or I move on to another doctor. That's not always easy because there aren't an unlimited number of doctors where I live. I know it is also difficult to go through all the hassle of going from facility to facility to find the one that best suits you. And then after you go through all the hassle and sit through a long appointment (most of the time spent waiting), you just want to get out of there. I do it every time and as soon as I leave say to myself, "why didn't you say that or ask this?" I hope that at your appointment next week, you can be assertive and request (demand) what you want. I hate being pushed around by doctors. I try not to let that happen. How many medical practices have I been thrown our of? Amazingly, only one.

  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited April 2019

    Thank you Jaycee! I'm sorry I wrote so much.

    No point in asking for what I want because they can't give it to me. I want the open breast wounds, one is 3"X4", one 2"X1" and one 1/2" X1", to heal. I want to take a shower and dry my body off without patting wounds and covering with bandages.

    Someone posted a really good article on radiology burns and how they differ from thermal burns. It explains what happened to me in 2003. I still don't understand what happened to my skin cells where I was previously burned, during or after my DIEP reconstruction. My skin in those areas turned black, like a burnt piece of meat on a grill. My home care nurse called the doctor and asked for Santyl cream, which helped. I don't have the nurse come to my home anymore.

    If you think of a circle, everything inside the circle is granular in nature, no dermal or epidermal cells. I'm told those cells will grow from the circumference inward. Not sure that is happening. No creams can grow skin so all my plastic surgeon told me to do was to use soap and water and keep them covered.

    I feel guilty for wanting someone at the cancer hospital to at least seem to care about me, but I know that is too unrealistic. For insurance reasons, I can't shop around for new doctors, its too late. I should have done that in Dec but because I was in shock and with the holiday pressure, I didn't do that.

    Oh well, live and learn. I can't change how the doctors treat me, only how I react to them. I am reacting by staying away as much as possible. Next week may be my last appointment with the plastic surgeon, no one tells me anything until the day of my appointment. There is no long term plan. I read there are stages with DIEP reconstruction involving a second or third surgery, but when I asked they acted like I was “one and done" as far as surgery is concerned. I don't want anymore surgery. My body looks horrible. The fake breast is so much smaller than my real one.

    To answer your question, I did keep a copy of what I wrote. I'm glad I did because I don't want to forget all the reasons to not go there again if I get another recurrence some day.

    You mentioned you worked in medical industry for years, I worked in veterinary medicine for years, many years ago. It is safe to say that Veterinarians and Vet. Techs have more compassion and concern for their patients than anyone I came across at the cancer hospital. Maybe seeing people die has made them all strive to stay unattached

  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited April 2019

    New rant on incompetence. Had brain MRI because of issues last week Monday (maybe mets???) Primary doc rushed an appointment with neurology for me tomorrow morning. and pushed to get me in since they did not have an opening until JULY!!! Get a call this morning that they need more scans done and no idea who requested but I had to go in. Had to arrange to have someone take care of grandkid I was watching to get it done. Of course contrast and IV. They told me they'd know in 10 minutes if it was good or not. So sat and waited. Got ok and left. Almost home when get another call to go back again!!! 3 times to sit in that tube with that pounding on my head and needle in my arm. Still don't know if it worked. Bet they are not there tomorrow when I go to neurologist either and that appointment will be a waste of time too. Hey....apparently I have nothing to do but sit and spend money on appointments for no reason....right?????

    Isn't like they don't know how to do MRI either!! UGH.

  • jaycee49
    jaycee49 Member Posts: 1,277
    edited April 2019

    Mavsmom, two things. First, when I went to a presentation by a BS that was given at my in town support group, he spent the whole meeting on breast reconstruction. I remember that several times, he talked about certain types of reconstruction not being possible on skin that had been radiated. He talked about exactly what you describe. I searched about it and it seems that any kind of flap surgery is ok where they use your own skin. The problem occurs when the radiated skin is used and it cannot handle the trauma of the surgery. Did they tell you about this?

    Second, I need to correct a misconception you got from my post. When I said I was involved with the medical establishment, I didn't mean I worked in it. I was diagnosed with MS when I was 41 and have had to deal with medical people because of that. MS is much easier to ignore than cancer so being in denial for years worked for a while. Later, when I had to deal with it, I learned how to work the system. That experience came in handy when I got the cancer diagnosis. I already knew about what could go wrong and usually did. (I did actually work in a hospital kitchen when I was in college but I don't think that counts as working in the medical field.)

    bcincolorado, what a mess. They called you back? Crazy. But, as I've mentioned before, these practices make the big bucks with procedures (and scans) so this is not that surprising. Every time I go to my neuro for my MS (not often), they want to do an MRI. The office visit you will have with the doctor will be expensive but not nearly as expensive as the MRI. Or all the MRI's.

  • Yndorian
    Yndorian Member Posts: 263
    edited April 2019

    I'm finishing with chemo next monday. Next step surgery. I should have an apointment with SO today to planning surgery. Went to the hospital. No docs working today because of a gremial trouble. They reprogramed my apointment. May 29! Wtf? More than a month later. I supose that a cellular regrowth is not a problem for them 😤

  • jaycee49
    jaycee49 Member Posts: 1,277
    edited April 2019

    Yndorian, that's ridiculous. Anyone you can call and bitch at? Worth a try. Plus it lets some tension off and could actually work. So you get your planning appointment a month later which pushes the surgery even later. Unacceptable. Can you call your MO and see if they can push things along? BTW, what is gremial trouble?

  • nanette7fl
    nanette7fl Member Posts: 469
    edited April 2019

    Yndorian, the surgery normally isn't until 4-6 weeks after your last chemo. There is a school of thought that one could wait up to 3 months before getting surgery because even though treatment is done chemo is still within the body.

    Sorry to hear you're being hassled 8(

  • kber
    kber Member Posts: 394
    edited April 2019

    So very happy I found this thread - it's really what I needed today.  I posted this elsewhere, but I think it's better here.

    I am so very tired of being tired.  

    I am almost done with chemo after 5 months.  My last chemo treatment, assuming
    my WBC rebounds from last week is in two days.  I feel like I should be in
    a more celebratory mood.  I keep getting messages
    from friends and family asking when we can lift a glass of champagne and kiss
    chemo goodbye.  (Yeah, no - the idea of alcohol right now is unappealing.)

    And yet, all I can think about is how freaking exhausted I
    am.  How this one last chemo treatment is
    only going to make me feel worse before I feel better.  How, after 5 months, my nausea is getting worse.  How my nails are about to fall off.  How I still don’t have eyebrows or eyelashes.  How long it’s going to take to even start to
    look and feel normal again.

    I want to feel grateful, or even just relieved.  Instead I can’t mentally get past the next week
    and the knowledge that I’m going to feel like crap for the next 7-9 days.  This whole time I’ve not once been tempted to
    quit early or ask for dose reduction.  I’ve
    gutted it out and allowed myself to feel a small amount of pride at how tough I
    was.  I agreed to adding Carboplatin to Taxol,
    knowing it was more toxic, but that it could increase my long-term survival
    chances.  

    But I swear that if I walked into my MO’s office and he told
    me that I could opt out of my last treatment, I’d be tempted to do it, even
    knowing that finishing my course of treatment increases my odds.  I won’t really and I won’t even ask about it,
    but I am soooo ready to be done with this shyte. 

  • Trishyla
    Trishyla Member Posts: 1,005
    edited April 2019

    Kber. Chemo freakin' blows, doesn't it? No way to get through it except to get through it. Even if you have to crawl over the finish line, you still will have done it.

    You are tough. You can do it. You will do it.

    Sending huge hugs. You're almost there.

    Trish

    P.S.: Celebrate when you're ready. Not before. Everyone else can wait. This is your victory.

  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited April 2019

    Thanks Jaycee, I understand.  I am sooo sorry you have to deal with MS.  About 35 years ago my doctors thought I had MS.  I had a "drop foot" and problems urinating. It turned out it was from a herniated disc from a car accident.  I could never prove it was from the accident, but I am sure it was.  Anyway, I still remember calling the MS society and a really nice woman spoke with me and then mailed me all kinds of information.  I don't think we even owned a computer at that time. I remember enough to want to give you a huge hug! You have got to be a very strong woman because you have all these issues yet find the time to help the rest of us! Thank you!  

    I wish I had heard that doctor speak.  All that my PS told to me was that the radiated skin might be problematic, but he made it sound as if I shouldn't worry about it that he would handle it!  I feel stupid now because I didn't press him on that issue. 

    Today my MO called me.  I was shocked. She wanted to talk with me about my fears and decision to not take the Letrozole. (Long story, I won't bother with here.) Anyway, I am going to start the Letrozole tomorrow. It is just one more thing I don't want to do, but know I should.  You all know what I mean.

    Kber, I didn't have chemo this time, but I did the first time I had breast cancer.  It took me a good year to get my energy back and I am not sure it all came back, but I did fine for years......until the recurrence.  Thankfully my oncotype DX score was 21 and for my age showed chemo wouldn't help this time around. I'm glad because that really would have put me over the edge.

    I think low energy can really start the "negative" ball rolling. By that I mean, I do fine when I feel more like normal, but feeling so tired can suck the life out of a person!  It is easy in that state to want to give up, to not care about anything, the cancer, job, work at home, etc.  I don't think there is a word in the English language to describe it, but those of us who have been there understand.  That is the time we really need these board, this community, to vent to.  Hang in there Kber, it will get better! When I said it took me a year, I did start feeling better about a month after my last chemo, but it was only a little and gradually with each month, more energy came back. After a while I just realized one day that I felt normal again, so I don't actually remember the exact amount of time it took. Your energy will come back too!  (((hug)))



  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited April 2019

    Ok, went to neurologist appointment who tells us that they are concerned it is brain mets. Guess what? NO MRI report!!!! He had staff call and nag. they have not finished the report yet!!!! Which is what I specifically asked them about yesterday!!! Stressed I had a 10 AM appointment today. So now we wait until he can get report and read it. Then he'll tell us if ok or if a wait and see. Have a follow up in June already. No wonder I can't sleep or think or speak all my words out loud. They are in my head and won't come all out of my mouth. So just wait...………cancer stinks...……………..

  • Yndorian
    Yndorian Member Posts: 263
    edited April 2019

    Janet - sorry about my english. A gremio is a laboral union. The hospital staff didn't work today to claim for better payments. I'm in Argentina so you can imagine how difficult is public medical care here.

    I will talk with my MO next monday. Maybe she can do something. Thanks

  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited April 2019

    yindorian that is really bad that a heal agency is allowed to just close down. I can understand they want better pay but to not treat patients in a timely manner is not ok.

  • mara51506
    mara51506 Member Posts: 5,088
    edited April 2019

    kber. I hear you on chemo sucking. I did not enjoy it at all. It sucks.

    Now I am stage 4 but getting targeted therapy BUT I do deal with fatigue after so many years on active treatment. The only thing that helps me is walking and small hand weights. I do short walk in morning and after meals think about 15 to 20 mins. Gives me more energy.

    Hopefully you will feel better as the chemo leaves your system and you find things that build your energy. As for the hair, wigs are great. My hair did not come back after brain rads and I live in them. Mine look like hair and they make me feel pretty.

    BTW, I have decided no more chemo for me. Living on my own makes it impractical. If my tx fails, I will look into comfort measures. I certainly would never have a systemic chemo again myself.


  • jaycee49
    jaycee49 Member Posts: 1,277
    edited April 2019

    I just spent the last hour trying to chat with Medicare online. BIG MISTAKE. Yesterday, I got a bill from my hospital for a service date five years ago due to what is called a Medicare "take back." You guessed it. Medicare can review a claim any time and decide they made a mistake and TAKE BACK money they paid. FIVE YEARS. I explained all this in a chat window and my responses, not right away but later, stopped being sent. I lost the first guy to this glitch and then after explaining it all again, the second person said I wasn't logged in so she couldn't access my claims. My login had TIMED OUT, of course. The third person just told me to call because she doesn't have access to records THAT OLD. Are you kidding me? Has anyone experienced a Medicare take back? Can I look forward to more of them as I sit here in oblivion thinking my bills have been paid when they have not? Or Medicare can call a DO OVER for any of them?

  • marijen
    marijen Member Posts: 3,731
    edited April 2019

    Wow Jaycee! Did they give a reason for the take back? I contacted Medicare regarding my bills showing my whole new health care number. Theanswer they gave was there’s no law against it. So they spent a fortune to give us new numbers because of a bill in congress to protect our privacy and then there it is in big black and bold. Crazy. Thanks for the heads up, I won’t be calling them again.

    Can you appeal the charge?

  • jaycee49
    jaycee49 Member Posts: 1,277
    edited April 2019

    The hospital said they are still reviewing it. So why send the bill? Because a lot of elderly people, when they get a bill, just pay it. There seem to be these Recovery Audit Contractors (RAC) who work for Medicare (private companies) and it's almost like a contest to see which company can recover the most money. Billions. Then the hospitals have their own contractors to try and outsmart the Medicare contractors. Who wins? Not the patient. This has already ruined my day, probably my week. I still have to call 800-Medicare and see if I can find out anything. Maybe later. I need to decompress first. This is all a stage IV cancer patient needs...more stress. Thank you very much, Medicare.

  • Jo-Jo2018
    Jo-Jo2018 Member Posts: 124
    edited April 2019

    I've been reading posts here since I was diagnosed on my 41st birthday. Almost a year ago.

    I thought I was ok.... not. The aftermath of cancer is the worst for me.

    I hate my mutilated body. I hate my stupid pube looking head hair. I hate Tamoxifen. I hate cancer and I REALLY hate it when people tell me you are so blessed to be alive. I'm not blessed and I don't feel alive I feel dead inside.

    Rant over.....

  • marijen
    marijen Member Posts: 3,731
    edited April 2019

    That kind of thing would ruin my day too! Is it a very big bill? Hopefully it’s just a coding error that can be corrected. Yikes! Our treatments run into the hundreds of thousands. I’ll bet the bill going out was just automatic but there should be a flag that it’s in review. Enough to give you a heart attack.


  • jaycee49
    jaycee49 Member Posts: 1,277
    edited April 2019

    This is the original message I sent to the online chat guy, Myles. I lost Myles when my send button quit working. He kept saying, "are you still there?" Extremely frustrating.

    "I just received a bill from my hospital where I have received cancer treatment for the last five years. The bill is for service on Oct. 10, 2014. I called them to inquire about a bill from five years ago. They said it was a Medicare take back, where Medicare had paid for a service and now is taking back part or all of that payment. Can Medicare go back over all of my cancer treatment and take back any payment that has already been made? Should I look forward to more of these take backs? I suffer many indignities in my cancer treatment but this punch in the gut is over the top. I was, for all these years, assuming my bills have been paid. Now I find out maybe not. This is not a stress a stage IV cancer patient needs. Do I just sit here and wait for more bills to arrive?"

    I put quotes around the words "take back" in the message and got an error message that gave a long list of characters that are not allowed on the chat. Double quotes was one. I took them out. I was amazed that I had avoided all the others.

    I actually said to the person at the hospital, "can you go back 70 years and take back the charges for my birth?"

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