Hi folks,
Not sure how many people with the same diagnosis I might connect with here - apparently we're quite rare - but I thought I'd say hi anyway.
A year after first seeing my GP about a growing lump in my back, I'm a now couple of months after my DFSP diagnosis and a first excision, when the consultant didn't know what it was.
After getting my diagnosis from a general surgery consultant and the local hospital, I was quite reassured reading about it online. DFSP has a really high survival rate and low chance of metastasis. But the consultant who first removed the tumour had awful bedside manner. She explained some factors made her question the diagnosis and ended my final appointment with, "I'm so sorry, you're so young."
She referred me to the Royal Marsden and after a 2 month wait I got an appointment with the consultant. Who had an equally poor bedside manner, but was actually reassuringly dismissive of my concerns, in a weird way. He recommended another excision under general anaesthetic with bigger margins but still fairly superficial. He said, "I think you're worrying about it too much"! Frustratingly, he also said the method of initial excision at my local hospital means my wound after surgery is more likely to open up and my chance of recurrence is higher.
I had those couple of months of doubt where it was possibly something worse. But luckily feel relatively reassured now that it will hopefully be just a nuisance going forward.
I appreciate this is just my experience. It won't reflect those of other people in this group of even with DFSP.
Anyone else out there with DFSP?
Hi AlexDFSP
Searching for DFSP on the forum there have been a few people on here over the years but not many as you can see here
My wife has Leiomyosarcoma so understand the wonders of a rare cancer diagnosis and sometimes finding good information can be more difficult though sarcoma uk has something here.
I am sorry to hear about your experience with the doctors, sometimes because they deal with cancer every day they can become a little bit detached from the massive impact it has on their patients lives - well until cancer decides to visit someone they love anyway. Often the savior in that process is the specialist nurses.
It is likely you will be having checkups for some time yet but hopefully that will be all you notice. That is all my wife has now as her cancer has been stable for over 10 years even if for her there is not a cure at the moment.
<<hugs>>
Steve
Hi Suz1991,
Really nice to hear about your story. How have you found your whole journey?
I had my second surgery in March and found the care within hospital really good. They discharged me on the day and the worst part of my recovery was short-lived. Unfortunately my wound opened up a week after the operation, like it did the first time round, and I've had a couple of mild infections. So I've had to have the dressing changed a few times a week since mid March, which has been annoying. I think I'm almost healed, hopefully in time for beach swimming this summer 
After reviewing the removed tissue the surgeon said I was with a "99.9% probability cured" which was reassuring. I've got a follow up in September to check if it has recurred.
How are you feeling about a second surgery?
Hi Suz1991 (6f22eaff5ad54ba8a4f9a96e63fe9899), Sorry it's taken this long to respond.
I'm now just over two years from my final surgery at the Marsden.
I didn’t need a skin graft. I am just left with a fairly gnarly scar in my back over 5cm long and 2cm wide (I joke it was a shark bite 
).
I'm slightly bitter the surgeon in my local hospital didn't do a better job on the initial excision. This would have left a smaller final scar. But I'm grateful they saw me after long delays and I appreciate the diagnosis coud have been a lot worse.
I've had outpatient checkups with a doctor at the Marsden every 6 months since. They are very brief, about 2 minutes! They just feel the scar for any noticeable bumps, ask if I've noticed anything and answer any questions I have.
At my next checkup they said they might change the frequency to yearly. I don't know how long they recommend coming for checkups - something to ask in my next appointment.
In the meantime I'm trying to feel the scar for any bumps myself to check for recurrence. I feel optimistic it's gone.
How has your second surgery and recovery gone?
