Just diagnosed with DFSP FS

becnorman

Hi all,

I’m hoping that other people with DFSP still check in to this site as I’d love to make some connections.

a bit about me - I’m a 46 year old woman living in Adelaide, Australia and four weeks ago I was diagnosed with DFSP. Mine is the fibrosarcoma type which I think means a tumour of higher malignancy.

like many of you, I was misdiagnosed for several years, having first noticed a lump on my abdomen approximately two years ago. At least three different GP’s reassured me it was a cyst, and nothing to worry about. When It started getting bigger and causing slight tenderness, I insisted on it being removed. This occurred under a local anaesthetic, five weeks ago. Following biopsy, I was told by the plastic surgeon that the tumour was in fact malignant. I underwent a wide local excision two weeks ago but already know I will go back under the knife in a few weeks to remove more tissue as my margins are too small.

I’m definitely still trying to accept my diagnosis and am reeling from the shock of being told I have cancer. I’ve read all of your posts and am pleased that there seems to be a very good recovery rate for most people. I’m worried that my diagnosis of the FS type puts me at greater risk for recurrence and metastasis and I’m hoping to hear from others who’ve survived this tumour.

Thank you

rebecca

Steve4444

Hello Rebecca,

Going on 3 years post DFSP-FS on side of abdomen. I'm doing very well and wish you the same. I also had a wide excision done after my local dermatologist removed the tumor without proper care and precautions. The revision was accomplished at Mayo Clinic, US where I received a 6 week regimen of radiation treatment prior to surgery. The flap surgery (I think they should call it a flip surgery as I am wondering how they accomplished turning me over when I was under anethesia) removed my satorius muscle and replaced it with my lattisimus dorsi . I was lucky to not require a skin graft as my skin was stretched from my back to cover and close by plastic surgeon, a couple of days after the initial surgery. So after being reconfigured, so to speak, the scar have healed well and most importantly no reoccurence locally or metastasis. I get checked every 6 months and hope in October to move to a yearly checkup. I supplement that with quarterly skin checks (2 times a year would probably be ok) with local Dermatologist.

I am 69, but try to be active, as I was a runner, and still am, and this thing just came out of the blue. I am able to resume all my activities . I have no pain. When I first wake up I feel a little stiffness , but that subsides with movement. I would say the best thing you did was the followup surgery to get clear margins. I think this FS is more serious than DFSP without, but still a good prognosis with clear margins. I have some nodules on my lungs ( which is where it typically spreads , not lymph nodes), so they do an MRI/CT scan to monitor. A lot of people have nodules, but to play it safe, they are monitoring and see no change , so probably unrelated. I have altered my diet, to decrease sugar intake , and although never a big drinker , I drink rarely now ( a beer once or twice a month). The doctors have given me no dietary restrictions, these changes are mine. I feel they can't hurt and are good for my general health also. I also take supplements primarily for 3 reasons, to decrease inflammation, improve immunity and for the anti cancer effect of some supplements , (shown to be beneficial on mice, not humans). Again, not doctor recommended , but my doctors are aware , and checked for interactions/side effects, things like tumeric, green tea (EGCG ),certain vitamins, Berberine, Resvertrol, etc.

My best advice, is set a plan that you are comfortable with, get monitored as recommended, and get on with your life. The odds are way in your favor !

Steve