porocarcinoma survivor story... please

Bianca S.
Bianca S. Member Posts: 3
edited July 2023 in Skin Cancer #1
I was first diagnosed with Squamous cell, but when the labs came back it was worse, porocarcinoma which is apparently much nastier and easily spreads, I think. Did a CT which came back normal. (yeah!!) I have a great doctor with a postitive attitude, but they all talk about the best case scenario. I have a small wonderful support network already. On the other hand, I can only find the worse case scenarios in my on-line research. Surfing the net scared the hell out me. I stopped after about an hour, but would like to hear from someone dealing with this longer than I.

Comments

  • Bianca S.
    Bianca S. Member Posts: 3
    #2
    update
    So far, I am my own answer. Had MOHS surgury and a clean bill of health. Scar is still healing and no signs of spreading.
  • beacon
    beacon Member Posts: 77
    #3
    thats fantastic news!
    sorry
    thats fantastic news!
    sorry you have had no responses to date...
    i have never heard of porocarcinoma before.
  • Gxc137
    Gxc137 Member Posts: 1
    #4
    My boyfriend was just

    My boyfriend was just diagnosed with porocarcinoma a few days ago.  We still don't know yet if it had spread anywhere but hoping for the best.   Have you had any recurrence since 2010?  

  • GBrooks31
    GBrooks31 Member Posts: 1
    #5
    Gxc137 said:

    My boyfriend was just

    My boyfriend was just diagnosed with porocarcinoma a few days ago.  We still don't know yet if it had spread anywhere but hoping for the best.   Have you had any recurrence since 2010?  

    Surgery

    Early dectection is key.  I had surgery on March 18th.  I thought I was going in for a routine out patient removal of a cyst.  10 days later I find out that it was Porocarcinoma.  6 months later and many additional test everything is still looking up.  Tell him to keep positive and monitor everything closely and he will live a long and wonderful life.

  • deborah60
    deborah60 Member Posts: 1
    #6
    I also originally had a fluid

    I also originally had a fluid filled cyst removed from the back of my leg near my knee.  The results suprisingly came back as a porocarcinoma.  My surgeon recommended additional surgery to have a wider margin removed and then he refered me to a local onocolgist.  Due to it being a rare form of cancer I elected to go to the cancer center at Duke University Hospital instead.  The team of doctors there recommended a PET scan (which my insurance would not cover, I had 3 CT scans instead), a sentinal lymph node biopsy, and additional wide margin surgery.  That was all completed in April 2015.  The test came back with clear margins and the cancer had not spread to the lymph nodes or major organs.   I never had a moments trouble or pain after the surgeries.  That should be the end of the story but 4 months later I sometimes have a new burning sensation near the site that makes be worry.  Am I being paranoid?  Is there any way they can tell if the cancer has returned without additional surgery.  Are you still cancer free?

  • Bianca Sa
    Bianca Sa Member Posts: 2 Member
    #7
    Gxc137 said:

    My boyfriend was just

    My boyfriend was just diagnosed with porocarcinoma a few days ago.  We still don't know yet if it had spread anywhere but hoping for the best.   Have you had any recurrence since 2010?  

    10 year follow-up

    Hoping all was well.

     Went to dermatologist today, one minor cyst, excised with no worry.  Testing just to be sure.  Have been cancer free for 10 years.  Posted as Bianca S back then, but can’t retrieve my site ID/ changing emails etc.  this is a bearable cancer.  Stay vigilant.  That was the message I wanted out there.  At that time there wasn’t a single survivor story for this skin cancer (porocarcinom) anywhere i could find in the searchable online literature.  Just a great deal of extraordinary case studies. My surgeon said those are the stories that are published, the extraordinary.   Know it is something one can survive.  this is one time I did not strive to be extraordinary. 

  • leigh23
    leigh23 Member Posts: 4 Member
    #8
    https://csn.cancer.org/discussion/comment/1686287#Comment_1686287

    Bianca Sa: Thanks so much for the update it was encouraging to see. Not a lot of info out there on this rare cancer and I happen to be part of the 0.01% sadly. Your message gave me hope as I've just been diagnosed with eccrine carcinoma.. one spot on my foot had been there for about 8 months, I thought it was a keloid from a flea bite. Pretty scary stuff. I hope everyone is doing well still. Hard to tell since these posts are pretty old.

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