What to expect

Jenny1629
Jenny1629 Member Posts: 19
in Gynecological Cancers (other than ovarian and uterine) #1

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

  • mmcia
    mmcia Member Posts: 11
    #2
    I'm surprised no one has

    I'm surprised no one has responded to you. I was diagnozed with a rare vulvar cancer, Bartholian Gland Squamous Cell Carcinoma a year ago. The doctors said they only see this about once a year and didn't know exactly how to treat it. The first step is to cut the tumour out and for me the secound step was to cut the lymph nodes out to see if they are involved, mine were. Then for me that meant four rounds of chemo and 31 sessions of radiation. I guess it depends what you set in your mind but it was all just a process to take care of a problem. Here's hoping you never have to be subjected to that much radiation, I had 3rd degree burns and bloody flesh fell off me and the chemo caused my mucous system to burn but I knew that it was just a means to an end. The first surgery was Sept 7 th and the last radiation was January 23 and I had 4 BAD days, really 1 minute, five times a day for 4 days. It's totally survivable, bless you and stay strong.

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,506 Member
    #3
    mmcia said:

    I'm surprised no one has

    I'm surprised no one has responded to you. I was diagnozed with a rare vulvar cancer, Bartholian Gland Squamous Cell Carcinoma a year ago. The doctors said they only see this about once a year and didn't know exactly how to treat it. The first step is to cut the tumour out and for me the secound step was to cut the lymph nodes out to see if they are involved, mine were. Then for me that meant four rounds of chemo and 31 sessions of radiation. I guess it depends what you set in your mind but it was all just a process to take care of a problem. Here's hoping you never have to be subjected to that much radiation, I had 3rd degree burns and bloody flesh fell off me and the chemo caused my mucous system to burn but I knew that it was just a means to an end. The first surgery was Sept 7 th and the last radiation was January 23 and I had 4 BAD days, really 1 minute, five times a day for 4 days. It's totally survivable, bless you and stay strong.

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

    I am sorry I didn't see this before you added your comment

    Thank you for replying, I hope she is still checking the board.  I am a uterine (UPSC) survivor, so I couldn't add much on what to expect.

    I will tell anyone dealing with any cancer is hard.  It is a something you have to take one day at a time.  There will be hard days, days you are exhausted SO JUST GIVE IN TO IT! 

    Different chemos have different side effects and radiation pretty much just sucks.

  • Jenny1629
    Jenny1629 Member Posts: 19
    #4
    mmcia said:

    I'm surprised no one has

    I'm surprised no one has responded to you. I was diagnozed with a rare vulvar cancer, Bartholian Gland Squamous Cell Carcinoma a year ago. The doctors said they only see this about once a year and didn't know exactly how to treat it. The first step is to cut the tumour out and for me the secound step was to cut the lymph nodes out to see if they are involved, mine were. Then for me that meant four rounds of chemo and 31 sessions of radiation. I guess it depends what you set in your mind but it was all just a process to take care of a problem. Here's hoping you never have to be subjected to that much radiation, I had 3rd degree burns and bloody flesh fell off me and the chemo caused my mucous system to burn but I knew that it was just a means to an end. The first surgery was Sept 7 th and the last radiation was January 23 and I had 4 BAD days, really 1 minute, five times a day for 4 days. It's totally survivable, bless you and stay strong.

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

    What to expect

    Thank you for sharing your experience! 

    So far I have received 3 rounds of chemo and 17 radiation treatments (I'm supposed to have 6 chemo and 39 radiation treatments).  The Dr. said that it looks like the tumors are shrinking so hopefully...

    Anyway, I did not respond well to the last chemo treatment.  I was confined to bed for 3 days and I'm not very hungry.  I hope that this goes away and I can tolerate the next chemo which is this week. 

    I appreciate the input and I hope that you are doing well!

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,506 Member
    #5
    Jenny1629 said:

    What to expect

    Thank you for sharing your experience! 

    So far I have received 3 rounds of chemo and 17 radiation treatments (I'm supposed to have 6 chemo and 39 radiation treatments).  The Dr. said that it looks like the tumors are shrinking so hopefully...

    Anyway, I did not respond well to the last chemo treatment.  I was confined to bed for 3 days and I'm not very hungry.  I hope that this goes away and I can tolerate the next chemo which is this week. 

    I appreciate the input and I hope that you are doing well!

     

    It is hard

    Jenny, no one here would lie to you - it really is hard. 

    I can't remember if I saw what type of chemo you were getting but with the Taxol/Carboplatin I had I was not hungry at all.  And not wanting to eat was NEVER a problem for me in the past.  I had to force myself to eat, especially protein, to try to help keep all my numbers up so the treatment could stay on track. 

    The radiation is going to make you extremely tired too, so give in to it and sleep.  It is hard, you think you are never going to make it, but you can do it.  I guarantee you will amaze yourself

  • Jenny1629
    Jenny1629 Member Posts: 19
    #6
    What to expect

    After 32 radiation treatments, 5 chemo treatments fortunately no surgeries except for the biopsies and removal of my port 2 weeks ago, I just received word today that my biopsies showed no evidence of malignancy!!!

    I still have to have a PET scan but I pray that it too will be clear!

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,506 Member
    #7
    Jenny1629 said:

    What to expect

    After 32 radiation treatments, 5 chemo treatments fortunately no surgeries except for the biopsies and removal of my port 2 weeks ago, I just received word today that my biopsies showed no evidence of malignancy!!!

    I still have to have a PET scan but I pray that it too will be clear!

     

    Great News!

    Great News!

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