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Thread: Papillary sqaumous cell carcinoma of the vagina

  1. #1
    Newbie New User
    Join Date
    May 2016

    Papillary sqaumous cell carcinoma of the vagina

    Hi ya'll!

    I'm here to learn all I can about this new diagnosis that is mine. It is a rare form of cancer from what I have read, about 2000 cases per year in the US. I found it in Feb. when I was self-treating what I thought at the time was a yeast infection - discharge and an odd odor. But I had trouble using the applicator to insert the suppositories and when I dropped the applicator one nite I used my hand to finish the job. That's when I felt tissue hanging out the vaginal cavity that definitely wasn't supposed to be there! When I looked at my hand, there was blood running down my fingers.

    After visits with and exams by my GP and a local OB/GYN I was referred to our state's research and teaching hospital, UAMS, where I had biopsies that came back as Stage III precancer. The GYN who had examined me didn't trust those results so he had more samples taken...and he was correct. Those samples came back as vaginal cancer. They referred me to the Gynecology Oncology Clinic at the Rockefeller Cancer Institute and the oncologist determined it was Stage 1. I am scheduled for surgery on June 3 to remove the mass if possible as well as the lymph glands on the left and right to see if it has spread. There is some question about the removal due to the urethra - if he can't get it out without damaging the urethra, he will leave it. He told me that my prognosis is good - that this type cancer is the easiest to treat with the highest success rate. If the mass can be removed and he gets clean margins, I may not need radiation and/or chemo. We won't know til surgery is done and the path report is back on the lymph glands.

    So that is where I am today!

    Thanks for any input you can offer!

  2. #2
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Leslie, welcome though I am very sorry you have reason to be here. Obviously, I have not had direct experience with what you are dealing with but wanted to say welcome since your post has been here for a few hours without a response.

    There are a couple of women on these boards who are dealing with similar issues, though brought on by a different type of cancer. Hopefully they will stop by to introduce themselves in the coming days.

    Take encouragement from what your doctor is saying about the ability to fight the disease, that is important. Good luck with everything, and do keep us posted. We will do our best to support you as you make this journey.

    Good health,

    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 67
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.

  3. #3
    Super Moderator Top User
    Join Date
    Dec 2011
    Hi Leslie, welcome. "Stage 1" is always nice to hear... well, that is, if you're going to hear anything. Let's hope it turns out to be easily treatable or to not need treatment at all.

  4. #4
    Senior User
    Join Date
    Aug 2015
    Hi Leslie, just wanted to extend my support. Good for you and your doc for being proactive on this. The waiting period can be challenging. Are you handling it ok? I had a different gyn. Cancer (stage 2), completed treatment about 6 months ago, and am cancer free today. You can do this. Hope you'll keep us updated.

  5. #5
    Moderator Top User jorola's Avatar
    Join Date
    May 2014
    Hi Leslie,

    Welcome to the group no one wants to be a part of. Sounds like you have a smart doc to catch a rare diagnosis and a great news it has been caught early. I can also tell you have a great attitude - that is also good. I see a cancer free and happy future in store for you.

    Good luck with the surgery on June 3. Keep up posted on how you are doing!

    Although lung cancer is where my experience is I understand the poking and prodding you are going through - currently getting that myself. Ugh right?!?

    Take care,

    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!


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