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What to expect

I've just been diagnosed (last week) with Stage III Vulvar Cancer.  My Doctor doesn't want to do surgery yet but as of 5 days ago I now have a port, a lymph node removed and met with the Radiation team.  Tomorrow I meet with the Radiation team to get me set up with my 5 weeks of treatment as well as the nurse who will be giving me my chemo once a week. 

I'm trying to keep a brave face, but I am terrified.  Everything is overwhelming!

Comments

  • debrajo
    debrajo Member Posts: 1,095
    Hi Jenny

     I am not from this board, but saw you post and could feel your fear so wanted to say, slow down and breath!  Since this is a rarer cancer this board is sometimes a little slow.  They will be here to answer your questions soon.  There are ladies here with vast knowledge.  While you wait, stay off the internet and go back to the main page   and type in your type of cancer in the search bar and it will pull up all the threads on vuluar cancer.  Study those, make a list of questions and someone will be here soon.  Good luck, Best Debrjo 

  • Jenny1629
    Jenny1629 Member Posts: 19
    debrajo said:

    Hi Jenny

     I am not from this board, but saw you post and could feel your fear so wanted to say, slow down and breath!  Since this is a rarer cancer this board is sometimes a little slow.  They will be here to answer your questions soon.  There are ladies here with vast knowledge.  While you wait, stay off the internet and go back to the main page   and type in your type of cancer in the search bar and it will pull up all the threads on vuluar cancer.  Study those, make a list of questions and someone will be here soon.  Good luck, Best Debrjo 

    What to expect

    Thank you and I will take your advice!

     

     

  • Jenny1629
    Jenny1629 Member Posts: 19
    debrajo said:

    Hi Jenny

     I am not from this board, but saw you post and could feel your fear so wanted to say, slow down and breath!  Since this is a rarer cancer this board is sometimes a little slow.  They will be here to answer your questions soon.  There are ladies here with vast knowledge.  While you wait, stay off the internet and go back to the main page   and type in your type of cancer in the search bar and it will pull up all the threads on vuluar cancer.  Study those, make a list of questions and someone will be here soon.  Good luck, Best Debrjo 

    What to expect

    Thank you and I will take your advice!

     

     

  • ppaseka
    ppaseka Member Posts: 70
    vulvar cancer

    Feel free to email my wife Cheryl at [email protected] 

    She will gladly answer any questions.

  • mmcia
    mmcia Member Posts: 11
    Jenny1629 said:

    What to expect

    Thank you and I will take your advice!

     

     

    Bartholian Gland cancer similar to vulvar cancer

    One year ago I had my secound surgery, this time to remove my lymph nodes. I then had two rounds of Fluorouracil and two of Mitomycim and at the same time 31 sessions of radiation. The radiation was like a bad sunburn till the fourth week then the 2nd and 3rd degree burns set in, the doctors gave me morphine. I lost nearly all my white blood cells (neutropenia) and was in hospital for 3 days. Really through the whole thing I was able to keep to my daily schedule (I'm retired) and I only had 4 unpleasant days. So I had a rare cancer that the doctors originally told me they weren't sure how to treat but in the end, I really had 1 bad minute (going to the bathroom), 5 times a day for 4 days. 20 horrible minutes, that's it. I have some left over issues. My bowels are 'delicate', I can't eat spicy food without spending more time in the bathroom that I want to. I have scar tissue but I joke that Hollywood stars pay big bucks for 'vaginal rejuvenation' and I got it for free.Throughout the whole thing my doctors kept telling me that I didn't look like a cancer patient, it is because I had faith that I would be fine in the end. Take care of yourself. Bless you.

     

  • Jenny1629
    Jenny1629 Member Posts: 19
    mmcia said:

    Bartholian Gland cancer similar to vulvar cancer

    One year ago I had my secound surgery, this time to remove my lymph nodes. I then had two rounds of Fluorouracil and two of Mitomycim and at the same time 31 sessions of radiation. The radiation was like a bad sunburn till the fourth week then the 2nd and 3rd degree burns set in, the doctors gave me morphine. I lost nearly all my white blood cells (neutropenia) and was in hospital for 3 days. Really through the whole thing I was able to keep to my daily schedule (I'm retired) and I only had 4 unpleasant days. So I had a rare cancer that the doctors originally told me they weren't sure how to treat but in the end, I really had 1 bad minute (going to the bathroom), 5 times a day for 4 days. 20 horrible minutes, that's it. I have some left over issues. My bowels are 'delicate', I can't eat spicy food without spending more time in the bathroom that I want to. I have scar tissue but I joke that Hollywood stars pay big bucks for 'vaginal rejuvenation' and I got it for free.Throughout the whole thing my doctors kept telling me that I didn't look like a cancer patient, it is because I had faith that I would be fine in the end. Take care of yourself. Bless you.

     

    What to expect

    Thank you for sharing that with me! 

    My treatments have been postponed until next week and I was told that I will have 30 radiation treatments and chemo once a week.  I'm still in shock about this experience but look forward to getting eveything completed.

    I'm 53 years old so hopefully I can withstand the side effects and continue to work.  The nurses have assured me that this cancer is manageable and I should be okay once the treatments are completed.

    Thank you again!