I am from Florida, U.S.A. I was diagnosed with Retroperitoneal Fibrosis

Posted , 7 users are following.

sadI am from Florida, U.S.A. I was diagnosed with Retroperitoneal Fibrosis in 2001. I'm sure I had it much longer, but no one thought to look for it. It was a completely unheard of disease for me, and they advised that I must have immediate surgery, or I would lose my left kidney. So, I went into surgery with a surgeon who had never done this before, and a urologist who had never seen this before, etc. The doctors said that this condition would disappear even though they had removed none of it. They removed only chunks for biopsy and moved the ureter out of the way of the mass. I believed them that it would go away and went to work as soon as the pain from surgery subsided. About 9 months later, super-sized pain came on and I was no longer able to work. I was on a duragesic patch, methadone, whatever it would take to kill the pain. Problem was, nothing could quench the ever present pain. I went through many stages with this disease, including finding an internet support group and finally educating myself on the disease itself. I found out it would not disappear as I was told and I needed to live with this forever. I went through all the psychological stages of adjusting to this news. I also found out that my kidney was not working. Stents were inserted, and I started on prednisone. I began at 60mg and tapered from there. I was on it for 3 to 4 months. I discovered that it shrunk the mass considerably and my stents could be removed. I began having regular CT scans and IVPs. I was living in Arkansas, U.S.A. at the time. I had no specialist who knew anything about this disease. Basically, I would find out what the best course of action there was and advise my doctor. It was a lot of responsibility for me, but I learned how to research and take this responsibility and go with it. It was empowerment to some degree. We moved to Florida and this remained the same for one year and by accident, I found out that my primary doctor thought I was just out to get our disability! I was crushed, and again, went looking for a doctor who knew something about this disease so I wouldn't be thought of as fraudulent. I went to Moffitt Cancer Center and found just such doctors. I am so greatful. I also have a new primary doctor here at the University Physicians Group who also understands I am not faking but in real pain and in need of monitoring. I did already find a pain doctor who also understood. Fortunately, I also had a judge who understood who pronounced me disabled so that I could get disability benefits. I would have to wait a whole year, however, for medical benefits, but could get monthly entitlements which for me, was only $580 per month but better than nothing! In Febr. I will be on our Medicare and hopefully, a supplement to help me with these medical bills. They have been tremendously high. I now have CT scans, Renal scans, tests on blood and urine. I am taking sustained action morphine as well as the hydrocodone, but am not acheiving perfect results yet, however, the pain specialist is working with me towards that end. I was sent to a physical therapist who helped me with the muscles for an easier urination, although she couldn't help with pain, said it was nerve pain. By the way, I had previous lung surgery to remove a mass also and it was just some fibrous material, and have something similar in a breast, also have another spot showing up on my other lung. I had more lesions or spots or another mass show up in my abdomen also, yet prednisone disappeared that as well. I don't know if there is such a thing as having this systemically, but it would seem so on my account. Thank you for this chance to share. Kathie :ill:

[i:6de7c63713]This message was automatically imported from the original Patient Experience[/i:6de7c63713]

0 likes, 11 replies

Report / Delete

11 Replies

  • Posted

    Hi Kathie & thank you so much for sharing your experience. My husband Sean is at the moment going through retrop. fibrosis which was diagnosed in his lower abdomen & there are not many case studies to be found in S.Africa. We have not found the doctors to be very sympathetic with regards to his illness, and both have had a really tough time, & really dont know who else we can turn to.I would be so grateful if you would kindly send me the email addresses of the various doctors that helped you the most, so that I may send to them the CT- Scan, & ask them their advice. Warm regards Sean & Gina South Africa.
    Report / Delete Reply
  • Posted

    Hi Kathie, I too have retroperitoneal fibrosis and I also go to Moffitt Cancer Center. They have helped me a lot. I have pain and discomfort all the time. Last year after taking tamoxifen and prednisonne for two years the mass had shrunk and they took me off the medication. Three months later after a ct scan, it was back. I ended up in the hospital with a severe kidney infection and blockage, so now I am back on the medicine and a stent in my right kidney. It's no fun. Some days are better than others, but it never goes away. Good luck to you.
    Report / Delete Reply
  • Posted

    Hi

    My husband has recetly been diagnosed with RPF after many months of scans, tests (being told it was cancer) to finally he has had to have his ureta bypassed and a portion of the mass removed, however this cant be completely removed as it surrounds his artery and is concrete in texture (surgeon said it was like chipping away at a paving stone).

    Surgery was done by a top urologist who was reccomended as being one who knows about this disease.

    I have never seen my husband so ill, he lost 4 stone (56lbs) in under 5 months and was on morphine patches combined with other pain relief.

    Now we seem to have been left hanging, as they dont know what they can do. they dont think steriods will be of any use because of how hard the growth is and just seem to push around from one appointment to another.

    I know this is a rare condition, but someone out there must know something.

    Please please if anyone can give us some advice or encouragement we really do need it.

    Life for my husband is unbearable most of the time, and he still tries to do the normal everyday things, this is not always possible and he gets very low.

    xx

    Report / Delete Reply
    • Posted

      Please contact Paul Schell at Johns Hopkins University Med. Has over 300 patients in his study. My Husband Bill was Dx 20 years ago. Treated with steroids and Cellcept. Pain and drug free for over 7 years. Google him. Good luck. Kim
      Report / Delete Reply
  • Posted

    Hi my name is Chris.

    I live in Australia.

    I'm aware you posted this some time ago.

    I have recently been diagnosed with RRF.

    Initially I was diagnosed with cancer.

    Had surgery to remove my ureta kidney and lymph node. One week later I was advised it wasn't cancer of the ureta but RRF.

    I have been put on prednisolone and methotrexate.

    I was hoping that you could tell me what medication you are on and if you are in remission.

    I don't want to take chemical drugs as it only kills my immune system etc etc.

    I'm so worried about the long term affect of taking these drugs.

    I'm in constant pain - sciatica nerve - day and night.

    This is not how I choose to live the rest of my life if I can help it.

    So many lifetime goals yet to achieve.

    Can anyone help me please?

    Report / Delete Reply
    • Posted

      Hi Chris,

      It's not forever mate. You need to get this under control.

      RPF is usually secondary to IGg4 Auto-immune disease. There's a combination of drugs that seem to work on a lot of cases(as few as they are). If you haven't yet been referred to an immunologist, get your GP to do so. My immunologist is Dr Karen Morwood and she is very thorough. She works out of Sunshine Coast University Hospital in Qld.

      Good luck mate

      Rob

      Report / Delete Reply
  • Posted

    Contact Dr Paul Schell at Johns Hopkins Hosp. In Baltimore, MD. My Husband Bill wad Diagnosed about 10 years ago. Had stint in ureter, biopsy via robotics Surg. Put on steroids and Cellcept for about 2 years. Now many years symptom free. Gets blood quarterly and MRI with contrast yearly. Hope this helps you. His practice is moving to Washington University Hosp this summer. So contact him soon. He has a study going on and over 300 patients with Retro-peritonitis Fibrosis. We found him by Searching the disease on google. Bill got a clean bill if health Monday. Good luck! Kim
    Report / Delete Reply
    • Posted

      Hi I contacted and got all record to dr Scheel for 2nd opinion. I thought he was opening clinic in Missouri once he is retired. I was hoping I would be able to wait to see him until then
      Report / Delete Reply
  • Posted

    They certainly have come a way since then. Since discovering that RPF is secondary to IGg4 Auto-immune disorder.

    I hope you are in the care of an immunologist. These guys usually know what they are doing.

    Good luck.

    Report / Delete Reply
  • Posted

    Our medical records sound identical. How are u now? I was just diagnosed 2016.
    Report / Delete Reply
  • Posted

    Hello i was reading your post and my husband in same situation for 2 years now im glad i have found other people who know about this ilness life has changed so much its pain pain pain everyday i cant believe not many doc know about this ilness we are in emergancey nearly every week just dont know what to do
    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up