invasive vulvar extramammary pagets disease

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invasive vulvar extramammary pagets disease

by denisevw on Tue May 22, 2012 02:38 AM

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Hi

Im from New Zealand and have never been on any sort of forum before.  I am 44yrs old with 6 daughters 25, 21, 20, 13 year old triplets are 2 grand children and a very patient husband.  

I have just been diagnosed with a very rare cancer, invasive vulvar extramammary pagets disease. My only symptom was an eczeme type rash on my vulvar for about 4 weeks before my husband said you should get it checked out.  My GP said not to worry and put me on a non-urgent waiting list to see a gynecologist.  My sister happens to work at the hospital and she rushed my appointment through. A biopsy was done and the results came back stating that there are cancer cells and they had grown deeper than the 1mm safety margin.  After abit of research I checked my groin nodes and I could feel my lymph nodes on both sides so I knew that it may have spread there already.  I had a MRI and it showed a possible pelvic lymphadenopathy. 

So on the 8th of May I had a Radical Vulvectomy With Bilateral Inguinal Lymph Node Dissection on both sides. I still cant sit and have already been back in hospital with an infection. I get my results this thursday and am praying that they will be ok.

Has anyone out there been through this sort of cancer??  I am told it is so rare that there is not alot of research done.

I have great support from family and friends but just need to talk to someone who has or is going through the same thing.

Thanks for listening

Denise

RE: invasive vulvar extramammary pagets disease

by shellyrico on Tue Jun 12, 2012 07:26 PM

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hello, my daughter Sarah who is only 18 went through this surgery and also had chemo and radiation. she has a reaccurence and now they want to do a radical surgery. were all very frightend and unsure about what to do. maybe you can talk with her. thanks.   a very concerned mother. Shelly

RE: invasive vulvar extramammary pagets disease

by denisevw on Wed Oct 24, 2012 06:35 AM

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Hi Shelly

How is Sarah going and how was her surgery?? Does she have the same cancer as I have, invasive extramammary pagets or a different type?   I have just had my third surgery and get my results on the 1st Nov.  Im hoping it has not spread too far.  Everytime I have surgery they cut more away and it is getting really uncomfortable.  If Sarah needs to talk please get her to email me I would be happy to answer any questions she may have.  Thanks Denise

RE: invasive vulvar extramammary pagets disease

by m.dianne on Sat Oct 27, 2012 08:08 PM

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On May 22, 2012 2:38 AM denisevw wrote:

Hi

Im from New Zealand and have never been on any sort of forum before.  I am 44yrs old with 6 daughters 25, 21, 20, 13 year old triplets are 2 grand children and a very patient husband.  

I have just been diagnosed with a very rare cancer, invasive vulvar extramammary pagets disease. My only symptom was an eczeme type rash on my vulvar for about 4 weeks before my husband said you should get it checked out.  My GP said not to worry and put me on a non-urgent waiting list to see a gynecologist.  My sister happens to work at the hospital and she rushed my appointment through. A biopsy was done and the results came back stating that there are cancer cells and they had grown deeper than the 1mm safety margin.  After abit of research I checked my groin nodes and I could feel my lymph nodes on both sides so I knew that it may have spread there already.  I had a MRI and it showed a possible pelvic lymphadenopathy. 

So on the 8th of May I had a Radical Vulvectomy With Bilateral Inguinal Lymph Node Dissection on both sides. I still cant sit and have already been back in hospital with an infection. I get my results this thursday and am praying that they will be ok.

Has anyone out there been through this sort of cancer??  I am told it is so rare that there is not alot of research done.

I have great support from family and friends but just need to talk to someone who has or is going through the same thing.

Thanks for listening

Denise

Hello Denise,

My mother (90 yrs old) has the same form of cancer you discribed. Pagets disease of the vulva. She was first diagnosed about 20 yrs ago.  They removed one side of the vulva and shortly after removed the other side. That stopped the spreading for about 15 yrs, then she had another surgery to remove more affected area. It continued to spread and they wanted to do more surgery. We took her to Cedar Sinia to see a specialist. Because of her age my mother decided not to have more surgery do to the difficult recovery.

We recently discoverd an alternative treatment that seems to be helping with her symptoms.  It's called "ozone thearapy".  She is getting ozone gas treatment as well using ozone infused iontment. All ingredients are natural (oxygen and olive oil). It probably has never been used for pagets before. The following is the web site for the doctor we are using for the treatments "www.lymeinducedautism.com".

I haven't been to this web site myself, just found out about it as I was composing this e-mail to you.

Regards.

Dianne

RE: invasive vulvar extramammary pagets disease

by m.dianne on Sat Oct 27, 2012 08:21 PM

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On May 22, 2012 2:38 AM denisevw wrote:

Hi

Im from New Zealand and have never been on any sort of forum before.  I am 44yrs old with 6 daughters 25, 21, 20, 13 year old triplets are 2 grand children and a very patient husband.  

I have just been diagnosed with a very rare cancer, invasive vulvar extramammary pagets disease. My only symptom was an eczeme type rash on my vulvar for about 4 weeks before my husband said you should get it checked out.  My GP said not to worry and put me on a non-urgent waiting list to see a gynecologist.  My sister happens to work at the hospital and she rushed my appointment through. A biopsy was done and the results came back stating that there are cancer cells and they had grown deeper than the 1mm safety margin.  After abit of research I checked my groin nodes and I could feel my lymph nodes on both sides so I knew that it may have spread there already.  I had a MRI and it showed a possible pelvic lymphadenopathy. 

So on the 8th of May I had a Radical Vulvectomy With Bilateral Inguinal Lymph Node Dissection on both sides. I still cant sit and have already been back in hospital with an infection. I get my results this thursday and am praying that they will be ok.

Has anyone out there been through this sort of cancer??  I am told it is so rare that there is not alot of research done.

I have great support from family and friends but just need to talk to someone who has or is going through the same thing.

Thanks for listening

Denise

Hi Denise, I just looked at that web site I gave you and I don't think it is about ozone therapy. 

Dianne

RE: invasive vulvar extramammary pagets disease

by VickiC on Sun Oct 28, 2012 11:10 PM

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Hi Denise,

I have been diagnosed with stage II vulvar squamous cell carcinoma...I had a vulvectomy on Oct. 11th in which most of the left side was taken, some of the right and my clitoris....I am still healing!  I will have to have a bilateral node dissection on Nov. 8th....Could you tell me how the node dissection surgery went for you...did they make 3 big incisions?  Did they go in an just look, feel, and take the nodes they wanted for biopsy or did they take all of them?  I am hoping the cancer did not spread to the nodes...but I had this cancer for a while so there is a greater chance of spread....I can't tell you how scared I am...I am 57 years old and really don't know how I got this....please update us on your prognosis and if the cancer spread to the nodes....could you tell me how your recovery was in the hospital and at home?  How long was your hospital stay?  I would love any info you can give me....good luck, I hope you get good news!

VickiC

RE: invasive vulvar extramammary pagets disease

by m.dianne on Fri Nov 09, 2012 01:25 AM

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Hi Denise I hope your Nov. 1st results were good. I replied to you on Oct. 27 telling you about my mother with the same condition you have. She has now had 3 treatments with ozone gas and is showing signs of improvement. If you have interest in this you can email me at 

Message edited by CancerCompass staff. For personal protection,email address removed. Consider private reply. Please review CancerCompass Member Guidelines athttp://www.cancercompass.com/common/guidelines.html 

Dianne

RE: invasive vulvar extramammary pagets disease

by denisevw on Thu Feb 07, 2013 03:57 AM

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Hi VickiC

Sorry I havn't replied until now.  I have only just read your questions as I never received the email.   I am hoping that your operation went ok.  By now you will already know what it is like and I can only hope you are dealing with it all ok.  I am going back in for yet another 2 biopsies within the next week.  I have already had a total of 4 operations and Im picking that I will have to have number 5 if the biospies come back positive.  But so far I have been lucky and it hasnt gone passed the point of no return.   Im guessing the hospital care where you are is alot different too the care we get here in NZ.  They dont keep us in hospital for very long, so I was home within 5 days, drains already removed and I was not in good form.  Within days i was back in with an infection.  They said they removed a total of 22 nodes from both sides, but lucky for me none of them had cancer, I have no idea how many we have in the groin area but here they seem to take them out, then test, where as they should have tested before taking them out.  Like you I was really scared and still am.  All that keeps me going is the thought of my 6 kids and 2 grand children.  Im only 45 and have alot more living to do yet.  The power of positive thinking is a great tool.  Im not saying that it is easy, because its not by any means, but you get passed the thought that the cancer is going to take you any day, and start thinking that each day is a bonus.  I havnt had any other tests to see if the cancer is anywhere else in my body all I know is that i am extremely tired all the time.  NZ doesnt seem to know alot about this type of cancer and we dont have the funding for them to find out.  I also have no idea how I got it, but cancers do run in our family, especially rare ones.  My nerves in both legs still hurt and am still on pain killers.  Lympodema is now in both legs and the nights seem to be worse, especially if I have been on them alot during the day.  Please contact me and let me know how you are getting on and if the nodes were positive or not.  I hope you have good news and I wish you all the best.. good luck

Denise 

RE: invasive vulvar extramammary pagets disease

by shellyrico on Sat Feb 16, 2013 06:19 AM

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Dear Denise,  This is Sarahs mother. im so sorry to inform you that Sarah passed away on Sept 3rd 2012. it happened so fast. im not even sure if it was the cancer that killed her. she had this radition callled brachytherapy done to a tumer that was inbetween her retum and bladder and it did help shrink it. but then the cancer came back on the other side and she was going to have a radical surgery. (Kaiser) took 6 week to schedule the surgery & we had to go into the ER a few days before because sarah was loosing so much weight and having trouble going to the bathroom. we were there for 6 days  and all they did was overload her with fluids and send her home on hospice. we took her to summuit hospital and they did one x-ray and found that she had a perforated bowel. the doctors thought she would die that day. she lived for 6 weeks after and they tried to save her but her poor little body couldnt recover and she died in my arms. it doesnt make since and never will but she was young and i think it spreads faster in the young because of a faster metabolism. just be carful with radiation and dont believe evrything they tell you. listen to your heart and body when making decitions about treatment. we tried lots of natural remedies but it just kept spreading.i still wake up everyday and wonder why shes not here. she was the most amazing person i've ever known. I hope all is well with you and thanks for responding to me & sorry it took me so long to respond.  Sarahs Mother  Shelly Rico. 

RE: invasive vulvar extramammary pagets disease

by denisevw on Sun Feb 17, 2013 04:00 AM

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Dear Shelly

I am so so sorry for your loss.  It just doesnt seem fair why someone so young is taken away.  I have this  picture in my mind of you holding her and my heart goes out to you and your family.  I can promise you that I will be listening to my heart and body and doing what I think is right for me.  Denise

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