A Dermatofibrosarcoma Protuberans (DFSP) interview .

Tausha's interview


How did all start?

Started with a noticeable small bump in my groin- in the crease of the left leg and groin. Small, but I brought up it to my doctor who said it was a cyst and it’ll go away. A year later I notice it again, and tell an OBGYN at my annual visit, and she also says it’s a common bartholins cyst. 7 years go by, it never really goes away but doesn’t bother me. Eventually it started itching or burning on occasion and I brought it up to a 3rd doc- another OBGYN, who says it’s scar tissue. I ask her to remove the lump since it’s uncomfortable and my underwear often rubbed right on it- she agreed and took it out while performing a total hysterectomy (due to a year long battle of unexplained bleeding and irregular periods). It came back as DFSP.

Do you already have a diagnosis? How long did it take you to get it?

I didn’t have any diagnosis- surgery was performed and it was removed June 28, 2019 and I got my diagnosis July 3, 2019.

For what medical specialties have you been treated? What has been the most useful specialty for your?

I was originally operated on and diagnosed by a OBGYN doc, who didn’t know it was cancerous. I was then referred to a gynecology oncologist who in retrospect was not a great fit. She insisted it would be easy, quick surgery, and opted for wide excision. No imaging done or anything- and pathology came back with all positive margins still, so she referred me to a surgical oncologist, so now I am doing more research on my own to find a doctor who knows best what to do for my cancer.

What has been the most useful thing for you so far?

The internet- researching on my own and realizing I need a whole team of doctors, not just one and that there are multiple approaches.

What have been your biggest difficulties?

Finding any kind of oncologist, dermatologist or any specialist who knows and has dealt with dfsp.

How has your social and family environment reacted? Have your social or family relationships changed?

They’ve been wonderfully supportive, some more distant since they don’t know how to help or what to say, but most are supportive and helping me keep a positive outlook.

What things have you stopped doing?

I watch my diet- I am not able to currently exercise due to recent surgery and stitches and all that, but otherwise unaffected.

What do you think about the future?

I’m hopeful I’ll find the right doc and get the all-clear call that I’m cancer free, but sure I’ll be having to have checks every year to watch for recurrences.

So far, which years have been the best years in your life? What have you done during them?

I’m not sure. I’ve spent the last 14 years raising my kids, and before that was all school. I’m thinking the best years are still ahead of me.

What would you like to do if you didn’t have your condition?

Take my health seriously and not for granted, and definitely take up yoga or something with full mobility

If you had to describe your life in a sentence, what would it be?

Blessed, but full of struggles one after the other the past few years.

Finally, what advice would you give to a person in a similar situation?

Ask a lot of questions. Be confident in your doctor and be sure they know their stuff and what their game plan is, and if it involves anything like surgery, chemo, etc- get a second or third opinion and get doctors working together to come up for what is best for your unique situation.


Nov 6, 2019

By: Tausha

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