vulvar cancer possibly spread to pelvic bone ..

Gwick
Gwick Member Posts: 6
in Gynecological Cancers (other than ovarian and uterine) #1

Hi, I'm new here and am a 4 year vulvar cancer survivor. I just had an unrelated CT scan done at the ER this past Tuesday and they found a lesion on my pelvic bone that is conducive with metistative (sp) . I am wondering if anyone else has had that experience and what tests and treatments they had and or went through. I am scared and terrified ... but also trying very hard to keep hold of my faith. Have a phenomonal support system, so I feel blessed in that area.  SAVE THE TEAL !!

Comments

  • Judemo
    Judemo Member Posts: 172 Member
    #2
    Hi Gwick

    Gwick,

    I'm sorry to hear about what your going through. I'm newly DXd VIN, VAIN & CIN all III grade and possibly more progressive but I won't know until after biopsies come back.  I do know that I have endometrial and cervical adenocarcinoma and am having a radical hysterectomy Sept 8.  I feel for ya and wonder what my future holds too.  Did you start out having VIN III before finding out you had vulvar cancer?   

    Thanks for posting. Did you go to the ER for pelvic pain and they just happened to do a CT scan?  What is "save the teal?" 

  • Gwick
    Gwick Member Posts: 6
    #3
    Judemo said:

    Hi Gwick

    Gwick,

    I'm sorry to hear about what your going through. I'm newly DXd VIN, VAIN & CIN all III grade and possibly more progressive but I won't know until after biopsies come back.  I do know that I have endometrial and cervical adenocarcinoma and am having a radical hysterectomy Sept 8.  I feel for ya and wonder what my future holds too.  Did you start out having VIN III before finding out you had vulvar cancer?   

    Thanks for posting. Did you go to the ER for pelvic pain and they just happened to do a CT scan?  What is "save the teal?" 

    sincere thanks and hello

    SAVE THE TEAL is the name of my Relay for Life team . I wasn't "told" a diagnosis other than vulvar cancer at the place where I went. I have melanoma there that is watched very carefully, not only by my doctors, but by myself. I went to the ER for dehydration and lack of urination since 11 a.m. the previous morning ,back pain and absolutely no drive for thirst. The drew blood, started an IV, and ordered an abd CT .. I was several hours later told that I had a very suspicious lesion on my right kidney that needed immediate attention and that they found a blastic lesion within my pelvic bone , to also get attention to within 1-2 days. I have called oncologists office , now waiting on them to do their part and make my appointment.

  • Judemo
    Judemo Member Posts: 172 Member
    #4
    Gwick said:

    sincere thanks and hello

    SAVE THE TEAL is the name of my Relay for Life team . I wasn't "told" a diagnosis other than vulvar cancer at the place where I went. I have melanoma there that is watched very carefully, not only by my doctors, but by myself. I went to the ER for dehydration and lack of urination since 11 a.m. the previous morning ,back pain and absolutely no drive for thirst. The drew blood, started an IV, and ordered an abd CT .. I was several hours later told that I had a very suspicious lesion on my right kidney that needed immediate attention and that they found a blastic lesion within my pelvic bone , to also get attention to within 1-2 days. I have called oncologists office , now waiting on them to do their part and make my appointment.

    Please hang in there !

    Gwick, that sounds like you are in some pain & very tired. Please get rest and when you feel up to it later, keep us posted on how your doing....

     

    jude

  • Gwick
    Gwick Member Posts: 6
    #5
    Judemo said:

    Please hang in there !

    Gwick, that sounds like you are in some pain & very tired. Please get rest and when you feel up to it later, keep us posted on how your doing....

     

    jude

    Jude,  Mostly pain is in

    Jude,  Mostly pain is in lower right abd quadrant tonight ... some back pain , but tolerable. Mostly just so very tired . Planning to obtain general practitioner on Monday to get an obvious referral to the oncologist office that is needed to obtain an appt. I am trying my best to be patient and practical, but with cancer and history, they are neither one my strong suits. Thank you for the note , it is greatly appreciated!

       Gwick

  • Judemo
    Judemo Member Posts: 172 Member
    #6
    Gwick said:

    Jude,  Mostly pain is in

    Jude,  Mostly pain is in lower right abd quadrant tonight ... some back pain , but tolerable. Mostly just so very tired . Planning to obtain general practitioner on Monday to get an obvious referral to the oncologist office that is needed to obtain an appt. I am trying my best to be patient and practical, but with cancer and history, they are neither one my strong suits. Thank you for the note , it is greatly appreciated!

       Gwick

    How you feeling?

    Gwick,

    How are you feeling? Believe me, I completely understand not being able to maintain a sence of calm and patience when it comes to waiting to find out what's the cause of your symptoms and the "what-ifs?!" How are things?

  • Gwick
    Gwick Member Posts: 6
    #7
    Judemo said:

    How you feeling?

    Gwick,

    How are you feeling? Believe me, I completely understand not being able to maintain a sence of calm and patience when it comes to waiting to find out what's the cause of your symptoms and the "what-ifs?!" How are things?

    finally got an appt with general practitioner

    I am tired but I have a sense of accomplishment today with having an appt date of the 19th with a general practitionar so I can get my referral to the oncologist. It's going to be a long two weeks, but I don't have to leave the area and that's a giant plus right now. I am encouraged by the office's staff and their compassion and attention to my situation. My appointment will be moved up if their is an early cancellation or the dr feels that my case warrants an earlier appt. I still feel like a ticking time bomb of sorts but there is a plan in action and that helps my nerves a lot. Now to just keep calm and rest as much as possible for the next two weeks. uh huh .. yeah right.. lol ...

  • Judemo
    Judemo Member Posts: 172 Member
    #8
    Gwick said:

    finally got an appt with general practitioner

    I am tired but I have a sense of accomplishment today with having an appt date of the 19th with a general practitionar so I can get my referral to the oncologist. It's going to be a long two weeks, but I don't have to leave the area and that's a giant plus right now. I am encouraged by the office's staff and their compassion and attention to my situation. My appointment will be moved up if their is an early cancellation or the dr feels that my case warrants an earlier appt. I still feel like a ticking time bomb of sorts but there is a plan in action and that helps my nerves a lot. Now to just keep calm and rest as much as possible for the next two weeks. uh huh .. yeah right.. lol ...

    You got organized!

    Well Gwick, you have your schedule all planned out and that's the fist hurdle to overcome, now the second hurdle is waiting.....yuck, but let's wait together.  Then "we'll" get through the 3rd hurdle of going to DRs.....but, ONE STEP AT A TIME!  Let's just focus on tonight and doing deep breathing and relaxing imagery as you fall asleep....place yourself somewhere awesome (I'm thinking of a hammock under a Palm tree, hearing the waves crashing) then slow, deep breathing and let the oxygen reach your toes.  We'll get through this together!

    jude

  • Gwick
    Gwick Member Posts: 6
    #9
    Judemo said:

    You got organized!

    Well Gwick, you have your schedule all planned out and that's the fist hurdle to overcome, now the second hurdle is waiting.....yuck, but let's wait together.  Then "we'll" get through the 3rd hurdle of going to DRs.....but, ONE STEP AT A TIME!  Let's just focus on tonight and doing deep breathing and relaxing imagery as you fall asleep....place yourself somewhere awesome (I'm thinking of a hammock under a Palm tree, hearing the waves crashing) then slow, deep breathing and let the oxygen reach your toes.  We'll get through this together!

    jude

    virtual island oasis sounds divine ...

    This second hurdle may just be my undoing ... thank you for being here to wait with me !   the night was not very successful, i was up at least 6 times and just before his alarm went off , I was up on the couch listening to my ear phones thinking ... waiting and thinking go hand in hand and my OCD and ADHD just dont' handle either one well. Maybe a virtual island is just the oasis my brain needs to escape to and relax if that's possible. .. thought to highly ponder! Thank you for each of your notes, they are so comforting and helpful ... it's nice to have a friend here ..

     

                      Vicki

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