Why we never heard of this cancer

deblac
deblac Member Posts: 5
edited March 2014 in Gynecological Cancers (other than ovarian and uterine) #1
Hi,
I really am so irritated about this Vulvar Cancer that I and countless others never heard of until we get it. We hear about breast cancer and ovarian, uterine,cervical...why not Vulvar!!! I heard it was rare but how come there are so many of us!!!??? Why didn't we know it exsisted? My only thought is that women have been to embarrassed to talk about it with others. I guess if you had breast cancer it would be no big deal to discuss it since we hear about it all the time! But to tell someone I have cancer of the "hooch" must be a taboo topic. I for one am coming out of the closet and telling eveyone...uncomfortable as it may be. Perhaps if more do then these Doctors will do some further research and find ways of treating us instead of torchering us. I was shocked in my city Syracuse, N.Y. there are only 2 gyn/oncologists...what does that say??? Not good enough for me. We all need to put ourselves out there and tell people that this exsists and we need better treatments and cures too...just like the other cancers. I am really mad...no one ever told me you could get this...I just had a hyserectomy in Nov 05...I thought I was in the clear...no uterus, cervix or ovaries...don't have to worry about cancer!!! WRONG!!! Curious about anyones thoughts...sorry but I had to vent..when I read some of what others are going through..it pisses me off!!!

Comments

  • fightforit
    fightforit Member Posts: 11
    #2
    Feels good to vent doesn't it? I was the same way scared to death and sooo pissed off I couldn't see straight. I couldn't find any info anywhere. My gyn told me she had no clue, that in all her years of practice I was her first case so we were going to learn together. When I went to a Dr. Castaldo at the cancer institute here in Orlando Fl. I got some more info. He was a great guy. It is either caused by a virus or smoking. I said smoking? What do you mean? The carcinige (i know not spelled right) in cigs. gets passed into your urine. Well women wipe and it gets on the skin. He says that 95% with this cancer are smokers. The other part, virus, is usually a wart or somrthing of that nature. I was the smoker. I believe this needs to be out there also. Taught to the doc's and told to the women.
  • deblac
    deblac Member Posts: 5
    #3
    fightforit said:

    Feels good to vent doesn't it? I was the same way scared to death and sooo pissed off I couldn't see straight. I couldn't find any info anywhere. My gyn told me she had no clue, that in all her years of practice I was her first case so we were going to learn together. When I went to a Dr. Castaldo at the cancer institute here in Orlando Fl. I got some more info. He was a great guy. It is either caused by a virus or smoking. I said smoking? What do you mean? The carcinige (i know not spelled right) in cigs. gets passed into your urine. Well women wipe and it gets on the skin. He says that 95% with this cancer are smokers. The other part, virus, is usually a wart or somrthing of that nature. I was the smoker. I believe this needs to be out there also. Taught to the doc's and told to the women.

    Thank you again!!! I learned something new...I am a smoker and my doc told me that smoking is related to this too but didn't explain about the urine etc. I also have HPV so it could be both. Wow...I am planning on quitting...just have to get past this next week then on to Zyban..I love to smoke but I love my body and especially there more!! Thanks for that info. I sent you my e-mail address in my last note. By the way..my brother lives in Orlando.
  • njprncss4216
    njprncss4216 Member Posts: 11
    #4
    fightforit said:

    Feels good to vent doesn't it? I was the same way scared to death and sooo pissed off I couldn't see straight. I couldn't find any info anywhere. My gyn told me she had no clue, that in all her years of practice I was her first case so we were going to learn together. When I went to a Dr. Castaldo at the cancer institute here in Orlando Fl. I got some more info. He was a great guy. It is either caused by a virus or smoking. I said smoking? What do you mean? The carcinige (i know not spelled right) in cigs. gets passed into your urine. Well women wipe and it gets on the skin. He says that 95% with this cancer are smokers. The other part, virus, is usually a wart or somrthing of that nature. I was the smoker. I believe this needs to be out there also. Taught to the doc's and told to the women.

    My doc didn't explain what smoking had to do with vulvar cancer either. I don't smoke, but Jesus Christ! The carcinogens in the cigarette get passed on to our vulva through our urine when we wipe ourselves! HOLY CRAP! That information needs to be in a commercial that runs during the Superbowl, the World Series, the Stanley Cup, Saturday Morning Cartoons, The Today Show etc. Better yet every time they run a fast food commercial run one telling women smoking can lead to vulvar cancer and how to do a V.S.E.
  • beth21699
    beth21699 Member Posts: 1
    #5
    njprncss4216 said:

    My doc didn't explain what smoking had to do with vulvar cancer either. I don't smoke, but Jesus Christ! The carcinogens in the cigarette get passed on to our vulva through our urine when we wipe ourselves! HOLY CRAP! That information needs to be in a commercial that runs during the Superbowl, the World Series, the Stanley Cup, Saturday Morning Cartoons, The Today Show etc. Better yet every time they run a fast food commercial run one telling women smoking can lead to vulvar cancer and how to do a V.S.E.

    I had surgery Jan 06, local wide exision-horseshoe down to the bottom of the perinium, and ablation to the upper labia. I guess I haven't figured out this site, as I emailed several people and didn't hear back, so I must have messed up. I'm so relieved to find others in my situation, not that I wish it on anyone, but I'm sure you know what I mean. I just found this message area tonight. From the extensive research I've done, I've only heard this comes from HPV at my young (36) age, young to me, and that smoking is a factor b/c it weakens the immune system in fighting the virus. Anyhow, glad to find this area, hope I can find my way back. I see someone else here in FL...I'm just NE of you on the coast. My sibs all live in your area. Good luck to all. I hope to learn more here and have some hands to hold through it :)
  • getsailing
    getsailing Member Posts: 6
    #6
    beth21699 said:

    I had surgery Jan 06, local wide exision-horseshoe down to the bottom of the perinium, and ablation to the upper labia. I guess I haven't figured out this site, as I emailed several people and didn't hear back, so I must have messed up. I'm so relieved to find others in my situation, not that I wish it on anyone, but I'm sure you know what I mean. I just found this message area tonight. From the extensive research I've done, I've only heard this comes from HPV at my young (36) age, young to me, and that smoking is a factor b/c it weakens the immune system in fighting the virus. Anyhow, glad to find this area, hope I can find my way back. I see someone else here in FL...I'm just NE of you on the coast. My sibs all live in your area. Good luck to all. I hope to learn more here and have some hands to hold through it :)

    I live in FL also with stage III pre-cancer of the vagina. Its hell when someone asks you what type of cancer you have. Has Laser Vap. then biopsy came back positive, going back in next week, scarred
  • nsquirrely
    nsquirrely Member Posts: 50
    #7
    vulvar cancer
    I was dx with vulvar squamous skin cell carcinoma stage three in March of 2007. When i first came into the chat room in May of 07 it was a difficult thing to answer what cancer do you have. I quess being in a chat room where noone really knew you and the need for emotional support helped me to be able to discuss it openly. I found only one other person that had the same and never had a lot of contact with her. It was hard not having someone there that understood what this cancer involves. I looked for groups locally and there just weren't any to be found. Most of the groups are for breast and prostrate cancers. I suppose that is due to the fact that they are more widespread and talked about then vulvar cancer.
    Deblac, I do live in your area between Syracuse and Rochester NY. I found the same thing as you that it isn't well known and there were only three gyn onco in Rochester which is where I went for treatmnet as my gyn works in that area. If it hadn't been fo my gyn I don't know what I would have done as the gyn onco was not what I needed in a doctor. His bed side manner was horrible and amswering question or explaining things didn't seem to be his strong point. Thankfully my gyn stepped in to help me make the decisions and give me the information I needed to make them. She also reassured me that this gyn onco was one of the best and that as far as the surgery went I couldn't get any better. He did the surgery and I saw him one time after then had to move on to different doctors cause I just couldn't deal with him. I see a regular onco and my gyn for follow-up.
    Hugs and prayers
    Shirley
  • leeaquinn68
    leeaquinn68 Member Posts: 2
    #8
    nsquirrely said:

    vulvar cancer
    I was dx with vulvar squamous skin cell carcinoma stage three in March of 2007. When i first came into the chat room in May of 07 it was a difficult thing to answer what cancer do you have. I quess being in a chat room where noone really knew you and the need for emotional support helped me to be able to discuss it openly. I found only one other person that had the same and never had a lot of contact with her. It was hard not having someone there that understood what this cancer involves. I looked for groups locally and there just weren't any to be found. Most of the groups are for breast and prostrate cancers. I suppose that is due to the fact that they are more widespread and talked about then vulvar cancer.
    Deblac, I do live in your area between Syracuse and Rochester NY. I found the same thing as you that it isn't well known and there were only three gyn onco in Rochester which is where I went for treatmnet as my gyn works in that area. If it hadn't been fo my gyn I don't know what I would have done as the gyn onco was not what I needed in a doctor. His bed side manner was horrible and amswering question or explaining things didn't seem to be his strong point. Thankfully my gyn stepped in to help me make the decisions and give me the information I needed to make them. She also reassured me that this gyn onco was one of the best and that as far as the surgery went I couldn't get any better. He did the surgery and I saw him one time after then had to move on to different doctors cause I just couldn't deal with him. I see a regular onco and my gyn for follow-up.
    Hugs and prayers
    Shirley

    WOW. Everything said is so
    WOW. Everything said is so dead on. I hate telling people about the cancer because they all ask where. Work was the worse. Im glad that part is over. I have to go back though(Dec 26)and I know they will have more qestions that I really dont want to answer.
    As for my Dr..He was great.Va must be a good state for that type of Doc...haha. The only problem...Im not comfortable enough to ask him when I can have relations with my hubby. But thats because hes a HE and not a she.
    IF anyone wants to talk feel free to email me. I dont have many answers but knowing there are others out there like me made me feel better...and I know you understand that statement.

    Leeaquinn68@aol.com

    P.S. My dr said they same thing about smoking. Need to try and quit,Havent managed that yet
  • nsquirrely
    nsquirrely Member Posts: 50
    #9
    leeaquinn68 said:

    WOW. Everything said is so
    WOW. Everything said is so dead on. I hate telling people about the cancer because they all ask where. Work was the worse. Im glad that part is over. I have to go back though(Dec 26)and I know they will have more qestions that I really dont want to answer.
    As for my Dr..He was great.Va must be a good state for that type of Doc...haha. The only problem...Im not comfortable enough to ask him when I can have relations with my hubby. But thats because hes a HE and not a she.
    IF anyone wants to talk feel free to email me. I dont have many answers but knowing there are others out there like me made me feel better...and I know you understand that statement.

    Leeaquinn68@aol.com

    P.S. My dr said they same thing about smoking. Need to try and quit,Havent managed that yet

    rarely talked about cancer
    Hi Lee
    I'm gald to finally make contact with someone who has vulvar cancer. I have seen others who have posted here but never had any contact with them to talk about it.
    It would be nice to be able to talk to someone who understands how it feels to go through this.
    I'm sorry it took me a few days to get back here and post an answer to you. I am looking forward to talking to you.
    Hugs and prayers,
    Shirley
  • zjrosenthal
    zjrosenthal Member Posts: 43
    #10
    leeaquinn68 said:

    WOW. Everything said is so
    WOW. Everything said is so dead on. I hate telling people about the cancer because they all ask where. Work was the worse. Im glad that part is over. I have to go back though(Dec 26)and I know they will have more qestions that I really dont want to answer.
    As for my Dr..He was great.Va must be a good state for that type of Doc...haha. The only problem...Im not comfortable enough to ask him when I can have relations with my hubby. But thats because hes a HE and not a she.
    IF anyone wants to talk feel free to email me. I dont have many answers but knowing there are others out there like me made me feel better...and I know you understand that statement.

    Leeaquinn68@aol.com

    P.S. My dr said they same thing about smoking. Need to try and quit,Havent managed that yet

    Intimate issue
    I didn't have vulvar cancer but rather, anal cancer. I had 28 radiation treatments and 2 concurrent courses of chemo during the first and last weeks of radio. I went to Memorial Sloan Kettering cancer center in NYC where they are very knowlegable. Anal is also a squamous cell cancer usually caused by HPV. I finished treatment the middle of September tnis year. I had an exam from the surgeon the middle of December and thank God he found only scar tissue so I am hoping to avoid radical surgery and a colostomy. As far as resuming relations with hubby, doc said that I could as soon as I felt comfortable doing so. I have also been using a vaginal dialator since 6 weeks post treatment to keep the area from shrinking and to break up any adhesions (scar tissue) from the radiation. I also was told to use a moisturiser like replens or liquibeads 3 times a week. I am now 12 weeks post treatment and have tried relations but get very irritated and have burning with urination afterward for about a day. I hope some of this info is helpful even though the cancer is not exactly the same.
  • OMG
    OMG Member Posts: 3
    #11
    also in syr - need dr. advice
    deblac,
    i was recently diagnosed with severe vin III and need to have surgery. the first dr. recommended by my physician was in the rochester area and can't get me in for months. i would prefer syracuse since it is closer. i would love advice on a dr if you have any good or bad experiences to share. at this point i am frantic enough to go with whomever can get me in soonest....
  • ladydi65
    ladydi65 Member Posts: 1
    #12
    Help vulva cancer

    New here please help. 

  • buggutz
    buggutz Member Posts: 1
    #13
    Vulvar Cancer

    New here too. Laser next week as is non-invasive at this time.

  • babe12
    babe12 Member Posts: 103
    edited September 2016 #14
    I had vaginal cancer, that's

    I had vaginal cancer, that's a tough one to tell people. I think saying cancer of the hooch maybe an easier thing to say. It does shock some people, but most all I've told are respectful. It took a long time for people to get used to saying breast cancer so we'll get there one day. I had a long hard road with treatments & surgery, but I'm still here. That in itself makes it so much easier to say.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #15
    babe - so nice to hear from

    babe - so nice to hear from you! The ladies need to know they are not alone.  I was at a race this weekend for the hospital that treated my uterine cancer with my "love you lady parts" sign - I got laughs, saw smiles, and felt the uncomfortableness of the looks.  

    You ladies are in my hearts!

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