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Dermatofibrosarcoma Protuberans

Dermatofibrosarcoma Protuberans

Posted by fedeyks on Feb 27, 2012 1:49 am

Does anyone have any information on Dermtofibrosarcoma Protuberans? It's a soft tissue sarcoma ... very rare .... any information would be helpful. I was diagnosed on January 13th after being concerned about the mark on my back for 20+ years .... thanks in advance.

RE: Dermatofibrosarcoma Protuberans

Posted by WestCoast on Feb 27, 2012 9:16 pm

Hi,
I'd be happy to talk with you. I also had a 'mark' for more than 15 years. I was diagnosed last June 2011.
Cheers,
A
Westcoast.... After two cancers I am still....Happy, healthy and choosing JOY!

RE: Dermatofibrosarcoma Protuberans

Posted by fedeyks on Feb 28, 2012 1:40 am

Sorry to hear that. Any information you can provide would be great. I have contacted the Mayo Clinic in Rochester, Minnesota today and am being asked for a referral there. My tumor is 2.5cm x 2cm in size and located on my mid-back about 1/8" from my spine. It is very flat and the skin is indented. I do not have raised moles. It's purplish red. I have been told to have MOHS surgery but because of the tumor size and the unknown beneath I need a plastic surgeon and skin graft to fill in the hole that will be left. We are looking for that surgeon. Thoughts?

RE: Dermatofibrosarcoma Protuberans

Posted by Julie_admin on Feb 28, 2012 8:13 am

Sorry to jump into your conversation, but since you mentioned MOHS, I thought I would point you to this website which has a "surgeon finder". I hope you continue to have good conversation.

Julie, CancerConnection.ca Team moderator

RE: Dermatofibrosarcoma Protuberans

Posted by WestCoast on Feb 28, 2012 10:43 am

Hi,
Can you please connect us? I have given them my phone number for you. I am available
until 9 pm. If I am not able to talk please leave a message and I will
return the call.
Thanks
A


Westcoast.... After two cancers I am still....Happy, healthy and choosing JOY!

RE: Dermatofibrosarcoma Protuberans

Posted by WestCoast on Feb 28, 2012 10:45 am

Hi,
There are fabulous Mohs surgeons available in Canada. They would have to
decide but from the location of the tumor on your body I would guess you would have a good chance of getting it treated in Canada. Where are you located?
Blessings,
A


Westcoast.... After two cancers I am still....Happy, healthy and choosing JOY!

RE: Dermatofibrosarcoma Protuberans

Posted by WestCoast on Feb 28, 2012 11:11 am


PS The other thing I was told and read in the research is that you have a bit of time to plan your approach to dealing with DFSP tumors if it is just in one location. It is important to have a carefully thoughtout plan for AFTER surgery care because that is the most dangerous time.
Blessings,
A
Westcoast.... After two cancers I am still....Happy, healthy and choosing JOY!

RE: Dermatofibrosarcoma Protuberans

Posted by fedeyks on Feb 28, 2012 12:42 pm

Thanks Julie ... The surgeons are limited in Canada. I have a surgeon for the tumor removal and he's on the list but it's the repair surgery that they can't find a plastic surgeon to do (skin graft and close).

RE: Dermatofibrosarcoma Protuberans

Posted by fedeyks on Feb 28, 2012 12:49 pm

Thanks L. I received your number and will call you later today. My story is a bit complicated as I may have time but I don't because I am on leave from work and would like it done before I go back. I went through breast cancer treatments in 06/07 and the Tamoxifen caused me havoc but I committed to completely the five years, April 16th is my end of that. I would like to have this all done none so that I can be done with cancer. This DFSP diagnosis was quite a shock in January. It has grown from a small dot when I was 15 years old to the size it is now so I feel the sooner I get it out the better. I have been using alternative treatment in the meantime because I have nothing to lose (Castor Oil, Cannabis Oil, Acupuncture TCM)

RE: Dermatofibrosarcoma Protuberans

Posted by WestCoast on Feb 28, 2012 6:27 pm

Hi,
You've sure been through a lot... such strength you must have. I look forward to talking with you. I can only share my experience knowing that every case is different. Once you decide what to do in terms of surgery (Mohs is definitely the way to go!) then you will end up with your treatment plan. I can understand that time is of the essence.

My doctors made a plan so there would be limited cell growth after surgery... in my case that involved 5FU for five weeks (like a baby chemo), octreotide for 6 months (slows growth factor), and Gleevec for one year (works in the cells to change the messaging).

I also had a variety of complementary treatments including Vit C IV's, gene therapy, laetrile, Caraseng, and others to support my good health and recovery. My surgery (28 stitches) took a few weeks before stitches could be all removed partly because I was on treatments to slow cell growth....

I am now at the 5 month point and I have pretty good mobility (thanks to a fabulous sports medicine doctor who is also a homeopathic doctor). I am confident I will have perfect mobility soon. The main thing that slows me down these days is the brain fog and nausea associated with Gleevec.

The other thing that takes time is eating a very low sugar, low iron, and mostly vegetarian diet since sugar and iron feed cancer cell development. On the bright side I have lost more than 25 pounds and I am looking great if I say so myself:) I am doing yoga, pilates, lots of walking as well as the exercises my sports medicine doctor gives me. It all takes time.

I look forward to talking soon.

A

PS I was also going to go to the Mayo Clinic also because my surgery couldn't be done in a clinic...... but didn't.... I found the comprehensive treatment I wanted elsewhere
Westcoast.... After two cancers I am still....Happy, healthy and choosing JOY!