Admittedly I haven't come across this before but if my research is correct what you're referring to is Dermatofibrosarcoma. Unfortunately I couldn't find anyone on the forum with this but you may be able to find out more about this diagnosis on the Sarcoma UK website.
Our cancer nurses are also available for a chat on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.
Hi - I recommend you join the DFSP group on Facebook. I have DFSP, there is limited information and much of it I find confusing. For example it is a benign tumour, but appears to be classified as a cancer..... I only found your post as I was searching for information in relation to sorting out travel insurance. I only joined the chat to respond to you! I've had a pretty rubbish experience from the NHS in terms of communication and information.
I had DFSP (dermatofibrosarcoma protruberans) on my hand in the 1990s. It was removed (with wide margins) under general anaesthetic. It didn't recur in place, but (rarely) it can spread to other parts of the body. It's now one of the possibilities that is being investigated as a result of my 7-month cough and a CT scan showing lots of enlarged lymph nodes around my lungs.
After the operation to remove my DFSP in the 1990s, I was never offered any follow-up. Nowadays there is a systematic follow-up program, which you should definitely take up.
Sorry to hear that it's such a stressful time but atleast you have your diagnosis now and things must be looking positive! I'm doing really well thank you, I had my op on the 10th December last year was in and out same day, felt pretty rubbish for around a week but that was all, my scar has healed amazingly and no signs of reaccurance!
I can't believe I've only just found this forum. I was diagnosed with DFPS in January 2019, and completed all of my treatments in October 2019. The rarity of the cancer was something I struggled with, and I wish I had someone to chat to about it! If you have any questions or want to chat please drop a line x
How did you get on roger? I've had a cough for a while now but with the whole coronavirus I don't really want to say anything as they would say get a test which I can't get! I had a chest x ray 5 weeks ago where they found a shadow but with nothing to compare they shut it down. I'm stressing out that they have missed something because it took them 3/4 years to diagnose the dfsp in the first place and as a 19 year old female at the time told me they didn't have the funding to remove something cosmetic!
Although I had a dfsp back in the 1990s, my recent tests showed no sign of recurrence or spread, or of any other cancer. My cough turned out to be due to sarcoidosis, which is not a good thing to have but is not malignant. They decided that mine is not serious enough to require treatment, for now anyway.
You wrote: "they would say get a test which I can't get", however most hospitals have re-started testing (with additional precautions) despite coronavirus. Certainly if there's any suspicion of cancer you will be offered a test.
I'm puzzled that in the past they diagnosed a dfsp but did not remove it. I think a dfsp is always removed as a precaution, even if it isn't growing. How long ago was your dfsp diagnosed? Was it diagnosed by a biopsy, or was it just "suspected" to be a dfsp and was going to be monitored for further changes? If it wasn't removed, I presume you still have it and that it hasn't grown further. You mentioned in another post that you had a biopsy last year. I presume this was a biopsy of your swollen lymph node. What did that show? If you weren't given a clear explanation, you can request a copy of the biopsy report. You don't need to ask the consultant for this, you just phone the consultant's office. They won't regard this as an unusual request, and are happy to send these to you in the post. In my experience, biopsy reports are very clearly written and show how thoroughly they have examined the tissue sample. In my case the biopsy report showed that they had looked for cancer, fungal infection, and several other things, and found only a type of unusual cell associated with sarcoidosis.
At the beginning, after my cough had gone on for a few months, I was given a chest xray, which showed just the faintest suggestion of a shadow, almost not enough to worry about. When my cough didn't clear up after a course of omeprazole medication, they took another xray which was unchanged, then they referred me for biopsy. A biopsy is the most definitive way to diagnose these things. If nothing shows up on a biopsy you can just relax and keep an eye out for changes but not worry.
Lots of different things can cause a long-term cough, and most of those causes are minor and easily treatable, so there's no need to be anxious while being diagnosed.
I hope you're coping OK with your symptoms, and that your children are doing well.
