DFSP Friends.

caroleinnkeeper said:

More....

I am very fortunate to be just outside of Orlando and only 15 minutes from the fabulous Florida Hospital Cancer Center. The dermotologist who already removed the tumor and got clear bottom margins is excellent. The surgeon who will be taking more to get all round clear margins is also excellent and has seen about 20 cases of DSFP. My derm has only seen 8 in her long career. So, time will tell but as far as having amazing care, I have no doubt that this will be the case. Surgery is set for 4/22 and I am ready for it! I will only have to stay overnight if they do a skin graft. I already have an 8 stitch closure and that was kind of stretching it, so it really depends just how much more they take. I would certainly rather not have it, but we'll just have to see. I am self employeed, have a B&B for 20 years, so any time taken to close the business is not good, but will do what I need to do to heal. 

Thanks all for your expert feedback! 

Hi Carole good thing you found this thread - Nat and Jo are very good at helping in here, with answers and comfort. I hope every goes as planed on April 22.

I went to my GP today and he was very concerned about my swolen lymph node behind the ear. A week a go I had a swolen lymph node in my cheek. In january when i first had the fat tissue tumor that came back with DFSP removed from my hip i also had a fat tissue tumor removed from my neck and since the pathology from the surgery came back with have been removed in healthy skin I have had the recurring though that maybe the tests got swiched in the lab and really it was the one in the neck that had the DFSP and now that my throad has been acting wierd for a couple of weeks... My GP wants to talk to my oncologist and then get back to me tomorrow he wants to see it they can do an ultrasound of my neck if not i have to wait in line for an ardinary referrel and that might take several month.

I have this mean inner voice telling me " I knew it no one gets over cancer that easily "

I imagine now everything "odd" we all see will make us think that is something new. I guess we all have to take it one issue at a time and to try not to worry anymore than we feel we have to. Easier said then done I am sure! 

caroleinnkeeper said:

I imagine now everything

I imagine now everything "odd" we all see will make us think that is something new. I guess we all have to take it one issue at a time and to try not to worry anymore than we feel we have to. Easier said then done I am sure! 

My GP didn't get back to me today - hope he will tomorrow.

thanks for the hug and comfort - i'll try to see if I can get a biopsy of the lymphnode when the GP calls. The lymph node in the cheek was only swolen for a week so that is totally ordinary behavior - I hope. And yes you're propably right there is a good explanation for the lymph nodes swelling - I'm just overly sensitive and easily stressed right now. I have been trying to read up on how long time a lymph node are swolen when cancer is the course and I can't find anything so I guess it varies.

Lone111 said:

It is a matter of believing - right?

When you're told you are cured from cancer it is mainly a matter of believing right? because the doctors cannot tell if all cancer cell are gone - there can still be a few cells back to course another outbreak of this awfull disease - but you have to believe - I have to believe. I sure hope Jo is right that after the first year this cancer thing won't take up so much space in the thoughts anymore. And the facts about DFSP should make it earsier to believe that we are cured than many of the others awfull cancers.

And a lot of things should have been going wrong for me to have a cancer speading in my throat - firstly the test should have been switched - very unlikely - second - since DFSP rarely spreads to lymphnodes and not with this speed the cancer should have been misdiagnosed - also unlikely I think - third - you can reraly fell cancer spreading that is one of the things that makes it so scary. All in all it is propably a weird virus that'll pass in a couple of weeks.

My GP called and said the oncologist would think about what should happen and he might call me in otherwise I'll wait in line - and I think I'll be ok with that, since according to my above statement the chances of this being cancer related are very small.

I have booket some consultations with a hypnotherapist - first on April 29. and I really hope that help me think less of cancer - I hope it can make me believe :-)

BTW: Nat what about x-rays at the dentist? how do you do that?

The best to you all - has anyone heard from Helen?

the oncology called - they'll see me monday - I guess they don't think cancer that unlikely...I'm so scared again

I had my surgery Monday and things went well. I had already had my tumor removed along with a lot of tissue. She didn't have clear margins, so this was to go in and take more, until margins were clear. I have a 7" long cut, rather narrow now, to heal, but didn't need a skin graft. They didn't know going into it if I would need one or not, just depended on what they ended up having to do. So, I have blocked out this week to just rest and heal, and my next B&B guests are coming in Friday. My husband is being very helpful, but really just resting and icing is the only thing to do right now. Thanks for all your warm thoughts!

Doing better every day and this is the first morning I wasn't dying to take a pain pill. That is good because B&B guests checking in later, 4pm or after. I have my post-op appointment next week so we'll see what the doctor says. I think I am doing great. The 7" cut is in an difficult area though, high up on the outside of my thigh. I can lay down and stand fine, it is sitting that is tricky as it pulls the area. This too shall pass!

natmcg said:

Holiday time for me.
Hi ladies,
Sounds like every one is coming along nicely. Once your stitches are out carol you will probably feel more comfortable. Then the healing/itching starts.lol Jo and I both had our DFSP removed from under our left breast. So our problem was trying put to ware bras. Even now six months after surgery I find myself folding one of my husbands hankies(long ways) and placing it between my scar and the bra for a bit more comfort. Funny thing is, thats what I use to do for years to try and ease the iritation my bra caused on and around the tumor.

I'm going on a crusie for about 2wks then visiting some friends interstate. So may not be checking in or posting for a while. Ihave been in contact recently with a lady in Italy,her 7yr old son had DFSP and she is waiting to find out if he has had a reoccurance. I found her1st post when I was browsing through old threads on here named DFSP. I explained to her that this thread is where more recently diagnosed people are and she said she would like to join in. She has some serious conserns becasue the Drs.dont have experience with DFSP andif her sons results are positive for DFSP they have said they will need to remove a large part of his foot.
I did ask if she could find a STS specialist (Soft tissue sarcoma) in Italy or at least get a second opinion but as yet she hasnt emailed me back.I know you will all make her welcome if she does post here.

Stay safe
Natalie

PS lone I hope your other appointment went well and you are feeling more relaxed.:-)

Hello Ladies,

Back from a very relaxing week in the hot sun of Cuba.   Nothing to think about or do for a week.  It was lovely and the weather was perfect.  Just catching up on your chats this morning with my coffee (which I had to make myself .  Nice incision Carole, 7" and no graft.  Glad you didn't have to have that, makes recovering longer and more painful.  Glad all is going well.  Depending on how deep your doc went will determine your heal time.  They took my fascia so my doc says about a year for full heal.  As Nat says, after the stitches come out the incision will feel way better and time helps the skin stretch.  I was hunched over for about a week as it felt like my boob was stuck to my bellybutton, LOL.  I also put polysporin on it until the stitches came out, helped with it drying up and getting tighter.

Lone, I too am confused as to why your doc says this doesn't go to the lymph nodes. He is right that it spreads via the bloodvessels which is the most common way if it does but it can go via the LN.  I was also a bit confused, you had the DFSP in two sites??  Are your nodes still swollen.  If they continue to be I wouldn't wait until July, you may need a second opinion or go back and show your oncologist some articles on LN spread and insist on a biopsy.  You'd hate to think back and say "crap" I should have done something back then.  Multiple sites is also extremely rare. 

Jessie was telling me that her doc said "its not a real cancer".  What the hell does that mean?!.  Just goes to show you how rare this is and due to that the docs don't put it high on the priority list.  I know I keep saying this but find an STS (Soft Tissue Sarcoma) specialist.  They understand this type of cancer.  I think skin docs tend to treat it the same way as a carcinoma which is totally different.

Other than feeling totally relaxed from my holidays I have nothing to report.  Seeing the specialist in a week.  That will mark just over 5 months since my surgery. Like Nat I hate wearing a bra as the incision site is tender, can't wait till that goes away.

It's slowly warming up here in Ontario.  Going to start cleaning up the gardens today...I love that, very theraputic.

Cheers for now, Jo

PS Nat, if you havent' left yet have a BLAST on your holidays!!

Worried and confused

Hi everyone.  I wish I'd known about the Mayo Clinic and Dr. Attia before we started treatment.  I tried to research DFSP specialists but his name never came up at the time.

I'm the husband of a DFSP patient.  She's had it on her upper arm and shoulder for at least a decade, which I guess is why none of her doctors seemed very concerned by it.  It only started growing noticeably in the last couple of years, probably due to pregnancy.  Anyway, after finally getting a biopsy done I took her recently to a world-renowned cancer hospital and have had somehwat of a mixed experience.  The doctors we've seen don't sound especially knowledgeable about DFSP and we've been given some contradictory information.  The doctors seemed more concerned with cosmetics than getting rid of the actual cancer (as someone above put it, they seem not to consider it a 'real cancer') and so the surgery was, I felt very conservative.  This resulted (as I expected) in positive margins all the way around.  While they're willing to go back and do it differently this time (cutting away tissue and assessing margins in real time until negative margins are achieved), they seem to prefer simply treating it with radiation and observing it without any further surgery.  My wife also prefers this route because she's terrified of having to do a flap.  It is of course, her decision and not mine, but I think she's entitled to know the risks of this approach.  My feeling is that it's easier to prevent a recurrence now (through more definitive surgery plus radiation) then to have to deal with one later and also deal with the risk of metastasis, which becomes more likely the more you cut through the tumour.  Although radiation has had encouraging results, the data set is very small and so I'm just nervous about relying solely on radiation when we know the margins are entirely positive.

Has anyone gone through a similar situation (i.e. relying only on radiation to deal with positive margins)?  I feel like we're at a crossroads and I'm terrified of making the wrong decisison.