After having tah and chemo and finishing 11 months ago I am diagnosed with sarcoidosis. This explains a lot of issues that showed up on lung Ct scan and all the joint pain I have been having. Sigh......
Anyone else out there with this too?
Hugs to all, Carol
Hi Carol
What is it? I have lung nodes and joint pain but thought this was down to my RA....could it be something else?? x
It is an inflammatory process. Lung granulomas, asthma,eye problems, kidney stones and other problems.
Hi Carol. I was diagnosed with pulmonary sarcoidosis in April. It has been quite the ride and if you can be bothered reading I've outlined it here.
After I was diagnosed with Clear cell OC in November 2016 I had a routine CT which showed some inflamed nodes and modules in my lungs. I'd had a chronic cough the year before but was told my chest X-ray was normal (I've since found out it wasn't). My gynae onc surgeon told me the CT findings were "nothing to worry about" but after I raised the issue with my oncologist he referred me to a pulmonologist. PET-CT and needle biopsy followed. No sarcoidosis diagnosed, watch and wait.
Fast forward to 3/4 of the way through my chemo in March and I ended up with a port infection. Despite its removal and IVABs I kept getting fevers and superficial blood clots every time I had an IV line. Another PET-CT showed more inflamed nodes etc. Had thoracic surgery to take lung samples and lymph nodes. Sarcoidosis confirmed. I was quite unwell and in hospital for 5 weeks and Chemo was not re-started (still had 1 1/2 cycles to go). Commenced on methotrexate. Suffered with (and still have) neuropathic and muscle pain from the thoracic surgery and ongoing joint pain, cough, shortness of breath. CT last month showed no improvement. Increased methotrexate and increased prednisone.
Had intra-peritoneal port removed last month and bang! Infection. Currently back in hospital for third time in a month with ongoing fevers and Port infection won't clear up. It seems whenever I get unwell the the sarcoidosis "kicks off" some sort of hyperactive immune response. Or the sarcoidosis causes me to become unwell? Nobody is quite sure, doctors think there's a link but "they can't join the dots" is what one of them told me. I'm under the care of: a pulmonologist, Infectious Diseases, my gynae onc (as latest infection is a surgical wound infection) and my oncologist is kept in the loop even though I was NED at my first 3 month check up.
To be honest, the debulking and chemo was a breeze compared to all these other complications. I'd never heard of sarcoidosis before this and wish I'd never heard of it at all since! It's quite commonly found incidentally in cancer patients as we have so many scans.
What is your treatment plan? How are you feeling? I hope your ride is smoother than mine.... I'd love to be celebrating my NED but can't quite get past these complications. Good luck and thanks for reading.
Kirsty
Hi Kirsty- thank you so much for your reply. you certainly have gone through a lot !
I am at the very early stages of diagnosis and so far have not had a treatment plan moving forward. My primary care doc is so on the ball. She is the one that figured it all out! It totally explained everything I have had in the past. She looked at my recent CT scan for follow up for ovarian cancer and saw the lung granulomas. They were not there a year ago. I have ongoing hypercalciurea and kidney stones explained by the sarc. I hope to see her next week to see where I go next. She may send me to a infectious doc or pulmonologist. I am already under the care of a nephrologist for kidney problems. Also persistent eye problems also common with the sarc.
I have not had the infections. You are right about the OV surgery being a breeze compared to the sarc. Did your docs say if the chemo made it reveal itself?
If you want to IM me please feel free to. i am in the states.
Hugs, Carol
I also have sarcoidosis. I was diagnosed a few weeks before I was diagnosed with OC in Nov.2015 Noticed enlarged lymph nodes from a CT scan. They went in and removed one of them and did a biopsy and confirmed sarcoidosis. I have been NED since March 2016. I have been having problems with muscle aches in my legs and joint pain also. I am currently going to physical therapy to try to improve my walking. I was told my sarcoidosis was inactive in my lungs. Maybe it is causing some of these other problems. I have since quit my job because I was not able to do it physically. It's very frustrating.
Hi bsooner- I am sorry you also have this condition. Congrats on your NED. i hope it continues for ever. I also have a lot of muscle aches and pains and very bad joint pain. I have a kidney condition where I pee out too much calcium. this results in osteoporisis. You may want to check this out with your doc.
My sarc is active in my lungs. I have shortness of breath and asthma. I have granulomas in my lungs which is active in most sarc patients. What treatments are you receiving? I wonder if there is a connection between OC and sarcoidosis?
Please stay in touch!
Hugs, Carol
Problems with Portacath
Another failed chemo regime!
Update - another twist in the tale
Onco focus test
