I'm new here - Just diagnosed with VIN 3. Scared.

lorisluck
lorisluck Member Posts: 5
in Gynecological Cancers (other than ovarian and uterine) #1

Hi Everyone,

I'm 51 years old and a few weeks ago I started bleeding (post menopause).  My GP referred me to a gynocologist and he did a uterine biopsy.  While doing the biopsy the doctor saw discoloring on my vulva and told me he was not concerned about uterine cancer but was concerned about what he had found and that I needed another biopsy done.  I had the biopsy of my vulva done April 23 and was told results would be back no sooner than 7-10 business days so was shocked to receive a message from the dr. on April 29th saying biopsy results came back and are not good but are not the worst they could be and for me to call back.  I called back and spoke with the nurse who told me I'm being referred to an oncologist and when I asked her if it was cancer she said yes, the beginning of cancer. 

I am having a terrible time finding information about this.  I looked up support groups and there are many in the UK, so thankfully today I found this one!

My oncologist appt is on Monday May 5th.  I'm very scared and am not sure what to expect.  Now I'm thinking that if they do surgery they could possibly find more problems (yes I have been googling a lot!).  

What happens at the first oncologist appt? 

I feel like I am watching a movie of someone else's life, not mine.  Ever since I received the results I've felt so many different feelings and I have been doing the daily things that are expected of me but that's all, nothing more.  I just don't feel like it this week.....

I am also unemployed due to layoffs and am waiting here about a 6 month temporary position.  If I get the job I am not sure I can take it, it's a temp position and I can't just not be there if I need to have surgery.  Of course my health will come first, but need to survive somehow also.  I also raise my 8 year old grandson and it's just me and him.

Please help.  I have read some of the posts here and it sounds like things could possibly get even scarier.  

Thanks!

 

 

 

 

 

 

 

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,493 Member
    #2
    Lorisluch, so sorry you had

    Lorisluch, so sorry you had to find this page, but welcome.  I can't offer you any advice on your type of cancer but would like to make two recommendations.

    1. See if there is a gynecological oncologist you can see.  These doctors specialize in cancers of the below the belt cancers, more so than a gynecologist or oncologist.  I had no idea they even EXISTED until my gynecologist turned me over to one and it is what "we" need.  Hopefully you can see/talk with one of them.

    2. Take a breath.  It IS all overwhelming.  I think all of us can remember that initial thoughts we had.  Try to take it one day at a time and try not to get too far ahead of yourself.

    I would encourage you to do a search of the thread to see if others have already posted on your type of cancer and others can add their experiences.

    Hugs.

  • lorisluck
    lorisluck Member Posts: 5
    #3
    NoTimeForCancer said:

    Lorisluch, so sorry you had

    Lorisluch, so sorry you had to find this page, but welcome.  I can't offer you any advice on your type of cancer but would like to make two recommendations.

    1. See if there is a gynecological oncologist you can see.  These doctors specialize in cancers of the below the belt cancers, more so than a gynecologist or oncologist.  I had no idea they even EXISTED until my gynecologist turned me over to one and it is what "we" need.  Hopefully you can see/talk with one of them.

    2. Take a breath.  It IS all overwhelming.  I think all of us can remember that initial thoughts we had.  Try to take it one day at a time and try not to get too far ahead of yourself.

    I would encourage you to do a search of the thread to see if others have already posted on your type of cancer and others can add their experiences.

    Hugs.

    Thank you so much

    Thank you so much for your response No Time for Cancer.  

    The doctor I'm seeing on Monday is a gynecological oncologist.  Wow, that's only 2 days away....  

    I looked around for threads and am hoping to find one that's very recently active.  

    I appreciate your kind response and thank you for helping me not feel so alone.

    Tears in my eyes just thinking about Monday.  Thank goodness my little guy has a baseball game today, I love watching him play and it takes my mind off of things for a while.

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,493 Member
    #4
    lorisluck said:

    Thank you so much

    Thank you so much for your response No Time for Cancer.  

    The doctor I'm seeing on Monday is a gynecological oncologist.  Wow, that's only 2 days away....  

    I looked around for threads and am hoping to find one that's very recently active.  

    I appreciate your kind response and thank you for helping me not feel so alone.

    Tears in my eyes just thinking about Monday.  Thank goodness my little guy has a baseball game today, I love watching him play and it takes my mind off of things for a while.

     

    For me, I felt so much better

    For me, I felt so much better after meeting and talking with the gyn onc.  Someone who knew what they are dealing with here (when we have no idea) is comforting. 

    Not sure if there a lot of active threads on here with your cancer, and that is why I would recommend the search.  Some boards here are more active than others. 

    You aren't alone, and while we may not all have your type, we understand and the uterine and ovarian boards are some pretty cool, women, warriors.

  • lorisluck
    lorisluck Member Posts: 5
    #5
    NoTimeForCancer said:

    For me, I felt so much better

    For me, I felt so much better after meeting and talking with the gyn onc.  Someone who knew what they are dealing with here (when we have no idea) is comforting. 

    Not sure if there a lot of active threads on here with your cancer, and that is why I would recommend the search.  Some boards here are more active than others. 

    You aren't alone, and while we may not all have your type, we understand and the uterine and ovarian boards are some pretty cool, women, warriors.

    I am hoping I will feel better...

    I am hoping I will feel better after my gyno oncologist appt on Monday.  I am afraid to go...afraid that it could be worse than originally thought. (Yes, I was reading lots of horror stories about this!).  Of course I will go so I can get better, I just feel like I am in shock. I am trying to go easy on myself this week while trying to process this lovely "surprise".  

    Thank you for referring me to the ovarian and uterine boards, I will check them out! I did find one discussion that was last visted a couple of weeks ago and posted there.  Hoping for a reply.  

    I already feel like I'm not alone because of your responses, thank you so much for that!

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #6
    lorisluck said:

    I am hoping I will feel better...

    I am hoping I will feel better after my gyno oncologist appt on Monday.  I am afraid to go...afraid that it could be worse than originally thought. (Yes, I was reading lots of horror stories about this!).  Of course I will go so I can get better, I just feel like I am in shock. I am trying to go easy on myself this week while trying to process this lovely "surprise".  

    Thank you for referring me to the ovarian and uterine boards, I will check them out! I did find one discussion that was last visted a couple of weeks ago and posted there.  Hoping for a reply.  

    I already feel like I'm not alone because of your responses, thank you so much for that!

    Hi

    Hope your appt went well and you are starting to have a better picture of what you are facing.

     

    connie, from the uterine board

  • Jenn Jenn
    Jenn Jenn Member Posts: 5
    #7
    VIN lll

    Hi New to this board and was just diagnosed with stage 3,Still waiting for my initial appointment with the Cancer Center and oncologist,Gyno.I have seen our local Gyno who diagnosed my condition and refered me to a  CC , If anyone can enlighten me on what to expect or has gone through this .I was told id have to have surgery but not what kind yet but upon reasearching VIN lll it dont look promising as far as the type of sugery and im scare Ive read many Sites on this VINlll and they all seem to contradict them selves so im no futher ahead knowing then i was a week ago .

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

    VIN lll

    Hi New to this board and was just diagnosed with stage 3,Still waiting for my initial appointment with the Cancer Center and oncologist,Gyno.I have seen our local Gyno who diagnosed my condition and refered me to a  CC , If anyone can enlighten me on what to expect or has gone through this .I was told id have to have surgery but not what kind yet but upon reasearching VIN lll it dont look promising as far as the type of sugery and im scare Ive read many Sites on this VINlll and they all seem to contradict them selves so im no futher ahead knowing then i was a week ago .

    VIN 3

    Hi Lorisluck and Jenn Jenn,

    Sorry to hear what you guys are going through. I was initially DXd with uterine/cervical cancer (adenocarcinoma) & they think its endometrial ca that spread to the cervix, they won't really know till after my hysterectomy. Then I looked at my health record portal and saw this DX (which my Gyn/onc never spoke to me about): CIN, VAIN & VIN all grade 3. Well, I was shocked especially after I spent hours researching it and the horrid treatments for it! I couldn't get my DR to call me to talk to me about this and the nurse told me I had to wait till my next appt! But she told me that they wanted to deal with the cancer first and then treat the VIN/VAIN.  I was devastated thinking I had these issues on top of the uterine/cervical cancer! So, I go to my appt and they tell me that they don't know if I have VAIN/VIN But that I have CIN III (which I'm assuming turned into adenocarcinoma) & that they don't know how that DX got on my health portal!! My head was spinning because I had spent weeks believing I had it!  I was confused because i knew I didn't have a vaginal/vulva biopsy but thought maybe they did at my Conization. They did say that they would need to biopsy those areas only if I was showing symptoms.  What kind of symptoms were you guys having? 

    I have a post on CIN III, VAIN III &. VIN III on this discussion board if you want to read it. I'm assuming I will eventually get it.  I do know that smoking will exacerbate it.  I used to be a social smoker but had I known that the combination of HPV and smoking can lead to CIN, VAIN, VIN, I never would have.  I had never even heard about it until more recently!   I recommend going to Macmillan cancer support and you will find lots of people going through it and there is a lot of support there.  It's Macmillan.org I think. Keep us posted on how your doing.  We are here to support each other. 

     

     

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