am I alone?

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am I alone?

by Hilarywf on Tue Mar 06, 2007 12:00 AM

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I just got results from my recent biopsy and I am back where I was this time last year before surgery - stage III. Is there anyone else in the world with VIN? Are you stage 3 or 4? I left work and am sitting here with a bloody Mary and lots of tears. Am I alone? I am 29. When  this was first discovered, my doc said this is only seen is 80 yr old women - someone else out there tell me it's not true.....I have another issue on tope of, but not related to, that.... I am really desperate right now if anyone is around.

 

Hilary

RE: am I alone?

by Amyb0123 on Wed Apr 11, 2007 12:00 AM

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Hi Hilary...you are not alone...I am 44 and recently diagnosed with VIN 3...maybe cancer 1. I had surgery last week and am waiting on my pathology results. Wasn't that bad at all ...although I had a partial vulvectomy. The worse thing is feeling so alone as nobody young seems to be getting this. I hope you are being treated. Email me any time. It would help to hear from others.

Amy

RE: am I alone?

by Dipie on Fri May 11, 2007 12:00 AM

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No, you are not alone. I am having a partial vulvectomy on the 23rd of this month. I need to also have laser therapy. The VIN III/cancer has spread to the hair follicle area so that is a bit of a concern. I am 54, which is a lot older than you, but I still feel your age! I am just a little worried about the surgery but I am certain I can handle what is coming my way. They are so advanced in their knowledge and approach now. It has a very high success rate too.

Please keep us posted about your progress ok?

RE: am I alone?

by Cathyl on Fri May 11, 2007 12:00 AM

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Hi Hilary,

I don't have VIN, but I'm a 2 time cancer survivor.

Please know that you are in my thoughts and prayers.

It's hard to hear bad news isn't it?  It took awhile for me to even say the words "I have cancer."  Really hard. 

Take care and know that those of us who have responded to your post are thinking of you and sending lot's of well wishes your way!

Cathy

RE: am I alone?

by Brensmom on Fri May 18, 2007 12:00 AM

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No you are not alone. I just found out I have severe dysplasia, Carcinoma in Situ VIN III. I am terrified and everything I have read so far sounds way scary. I already saw on GYN-ONC at Mass General (I live in Boston) and they made it soound like it was nothing, a piece of cake!!! But everything I read is contrary to this. I am 39 years old and not ready to face some of these things. I must for my 12 year old though.... Where do you live? Have you seen a specialist yet? Please DO NOT drink any alcohol or smoke as these will make your immune system weaker... Please keep in touch.

RE: Million questions

by Brensmom on Fri May 18, 2007 12:00 AM

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Amy I am being treated at Mass General in Boston, MA. Where did you get treatment? I am sort f surprised at the NP who saw me last week. She made it sound like all they would have to do is Topical Chemo and most likely this would go away. I have VIN III as well!!! I am just concerned she is not taking this as seriously. Can you please tell me what made you decide on partial vulvectomy? Does it hurt? Does it look bad? I am sorry I have million questions and I am terrified.

RE: am I alone?

by Astro101 on Fri May 18, 2007 12:00 AM

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Hi Hillary!

No, you are not alone.  I had laser cone surgery in 1987 for severe dysplasia of the cervix.  I vaguely remember words like HPV and cancer associated with this surgery, but I was young & stupid and never asked questions... had the surgery and bam... it was gone and forgotten.

In March of this year, I scheduled my annual pap & went to the doctor complaining that I had a period that had lasted nearly 35 days with mild to moderate abdominal pain.  My pap smear came back normal and my doctor told me I was starting menopause & not to worry.  I am 39 years old.  I accepted this, but while I was there, I also had this "small growth" on my labia majora that had been there for a couple of years and asked my doctor to remove it.  She actually told me that it was nothing to worry about and though she could remove it surgically... why bother?  No one but my significant other would see it anyway!  I get very intimidated by doctors, but I said "No, I want it removed!" so she scheduled an in-office appointment where she removed the lesion (4 cm.) and sent me on my way stating that it would take 2-3 weeks to heal.

Three days later, this same doctors office calls me in for an appointment & my doctor tells me it was cancer and that I would need to see an OBGYN.  The actual pathology report stated "Squamous cell carcinoma in situ" and extended to the lateral margins of the biopsy.  This means that she did not remove it all.  She also made a comment that did not seem odd to me until I had researched it a bit.  She said "I don't know how you got skin cancer there... it is not really a place that we have exposed to the sun!"  In hindsight, this comment alone may force me to find a new family doctor.  I guess I should be grateful that she, at least, sent the removed lesion out for biopsy!

The following week, I saw an OBGYN.  He also did an ultrasound right in his office and noted several cysts in/on both ovaries, the largest being 4.5 cm. in size on my right ovary.  He tells me this was the cause of my irrational period and abdominal pain.  He scheduled me for surgery to do a wide local excision on the lesion, as well as laparscopy to remove the cyst on my ovary & a D & C.  The ovarian cyst as well as the D & C are not related to the squamous cell carcinoma in situ... just other female problems.

The surgeries were performed on May 8, 2007.  He drained the cyst, performed the D & C, and did the excision.  He had a biopsy done during the surgery, only to find out he had to do a bigger excision to get a clear margin.  The pathology reports all came back clean & I was left with some disfigurement in my vulvar area, as the right side is stitched closed almost half way down and will stay that way.  It looks a little odd, but could have been much worse.  It was non-invasive VIN III, so that is the good news!

I met with the OBGYN for a follow up yesterday & he tells me all is well and all I need to do from here on out is have a pap every 6 months to ensure no future growths.  Funny, but my pap was just fine in March... this was only discovered because I was vain enough to want to have this small growth removed & my doctor thought it was silly, but did it anyway. 

I feel very unsettled about the entire experience.  I have read alot of horror stories from women who had the surgery... got told to go home and quit worrying about it... only to be back a year or so later for a radical vulvectomy for the same thing.  I asked my new OBGYN "If it was right there, how do we know it is not in other places as well?"  I also have some similar looking lesions between my vagina and anus.  His answer was "Well, we could go biopsying all over the place & cut & cut & cut... but unless you are having any problems... why bother?"   

Today... I am "all better" but very unsettled!  If you want to talk about anything, please feel free to contact me.  I am a good listener.  :)

 

 

 

 

RE: am I alone?

by Dipie on Sun May 20, 2007 12:00 AM

Quote | Reply

 

On 5/18/2007 Astro101 wrote:

Hi Hillary!

No, you are not alone.  I had laser cone surgery in 1987 for severe dysplasia of the cervix.  I vaguely remember words like HPV and cancer associated with this surgery, but I was young & stupid and never asked questions... had the surgery and bam... it was gone and forgotten.

In March of this year, I scheduled my annual pap & went to the doctor complaining that I had a period that had lasted nearly 35 days with mild to moderate abdominal pain.  My pap smear came back normal and my doctor told me I was starting menopause & not to worry.  I am 39 years old.  I accepted this, but while I was there, I also had this "small growth" on my labia majora that had been there for a couple of years and asked my doctor to remove it.  She actually told me that it was nothing to worry about and though she could remove it surgically... why bother?  No one but my significant other would see it anyway!  I get very intimidated by doctors, but I said "No, I want it removed!" so she scheduled an in-office appointment where she removed the lesion (4 cm.) and sent me on my way stating that it would take 2-3 weeks to heal.

Three days later, this same doctors office calls me in for an appointment & my doctor tells me it was cancer and that I would need to see an OBGYN.  The actual pathology report stated "Squamous cell carcinoma in situ" and extended to the lateral margins of the biopsy.  This means that she did not remove it all.  She also made a comment that did not seem odd to me until I had researched it a bit.  She said "I don't know how you got skin cancer there... it is not really a place that we have exposed to the sun!"  In hindsight, this comment alone may force me to find a new family doctor.  I guess I should be grateful that she, at least, sent the removed lesion out for biopsy!

The following week, I saw an OBGYN.  He also did an ultrasound right in his office and noted several cysts in/on both ovaries, the largest being 4.5 cm. in size on my right ovary.  He tells me this was the cause of my irrational period and abdominal pain.  He scheduled me for surgery to do a wide local excision on the lesion, as well as laparscopy to remove the cyst on my ovary & a D & C.  The ovarian cyst as well as the D & C are not related to the squamous cell carcinoma in situ... just other female problems.

The surgeries were performed on May 8, 2007.  He drained the cyst, performed the D & C, and did the excision.  He had a biopsy done during the surgery, only to find out he had to do a bigger excision to get a clear margin.  The pathology reports all came back clean & I was left with some disfigurement in my vulvar area, as the right side is stitched closed almost half way down and will stay that way.  It looks a little odd, but could have been much worse.  It was non-invasive VIN III, so that is the good news!

I met with the OBGYN for a follow up yesterday & he tells me all is well and all I need to do from here on out is have a pap every 6 months to ensure no future growths.  Funny, but my pap was just fine in March... this was only discovered because I was vain enough to want to have this small growth removed & my doctor thought it was silly, but did it anyway. 

I feel very unsettled about the entire experience.  I have read alot of horror stories from women who had the surgery... got told to go home and quit worrying about it... only to be back a year or so later for a radical vulvectomy for the same thing.  I asked my new OBGYN "If it was right there, how do we know it is not in other places as well?"  I also have some similar looking lesions between my vagina and anus.  His answer was "Well, we could go biopsying all over the place & cut & cut & cut... but unless you are having any problems... why bother?"   

Today... I am "all better" but very unsettled!  If you want to talk about anything, please feel free to contact me.  I am a good listener.  :)

 

Please return to your OBGYN. The new lesion could very well be VIN! Do not let that doctor make it seem like it's all in your head. It isn't. Better safe than sorry. Please let us know what you decide.

RE: am I alone?

by Astro101 on Mon May 21, 2007 12:00 AM

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Thank you for your kind thoughts & wishes.  Unfortunately, I am currently waiting to see if I qualify for state health insurance.  Since I am uninsured, doctors are very uninterested in seeing or talking with me about anything.  I am supposed to get an answer on eligibility in the next 2-3 weeks & then will pursue it further.  For the time being, I am just a number. 

RE: am I alone?

by cleoreinca on Wed Jun 18, 2008 12:00 AM

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What a nightmare!  I had my surgery on june 6th.  I am still in so much pain and all the stiches popped and its just a wide gaping wound.  The dr. acted like no big deal take some aspirin.  I feel like taking a nail gun to his manhood and nailing it to the wall and tell him, hey no problem, take a aspirin you winner.  Sorry, lol, I'm obviously being sarcastic but I am in so much pain.  How long does it take to get over this crap?  I paid $455.00 for concert tickets (pearl Jam) and held out hope till the last minute (it was on the 16th).  I finally gave them to my neice.  She called me from her cell phone and I got to here a few songs, lol.  Wasn't that sweet. 

What did you guyz take for pain?  How long before the pain goes away.  I am disabled with MS and don't work (thank God) but how does anyone do this that has to go to work or do anything for that matter?  I have an apt. to see the doctor tomorrow. 

The other issue is the attach on what I felt was a large part of my identity, my sexuality.  I don't even want to think about having sex right now.  I have had 3 children and chronic pain but this is brutal.  Hats off to all those that I hear about that sail through this and the thought of ever doing it again........no thanks

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