Vulvar Cancer Survivor

pjeanscene
pjeanscene Member Posts: 6
edited March 2014 in Gynecological Cancers (other than ovarian and uterine) #1
I just had my 2nd radical vulvectomy on May 28, 2009. My first was on October 9, 2003. I had just passed my 5 year mark when I was diagnosed with a recurrance. How frustrating was that! I lost all my labia and clitoris with the first surgery so there wasn't a lot there for this one. They reconstructed the vulvar area using a gracillis muscle flap from inside my thighs. I was in the hospital for 2 weeks and had the most amazing care! I am in Ohio. My first cancer surgery was at the Mayo Clinic in Minnesota. My surgery was on a Thursday and they released my at noon on Sunday. Way too soon!! I ended up with a horrible infection because they "forgot" to send me home with preventive antibiotics!!

I am facing radiation this time. I'm worried about that. 5 days a week for 5 weeks! I should find out on Friday this week when that will start. They want to make sure I am healed enough.

This cancer is fairly rare for women of my age (47). Unfortunately, it is starting to become more common. A number of women my age and younger on my online support group have dealt with it.

Pam

Comments

  • beckyracn
    beckyracn Member Posts: 322
    #2
    Pam,
    I'm so sorry to hear of
    Pam,
    I'm so sorry to hear of your recurrence:( You hit the five year mark...that's when the little bit of hope for no recurrence becomes a reality...and then BAM! I would have used something a little more aggressive than 'frustrating' to describe my feelings! You've been through so much already!!
    I've had the radiation, stage IV cervical, and although it feels like nothing...it accumulates. Everyone has different experiences.Hopefully yours will be smooth sailing. My prayer are with you. Know that you are not alone.
  • funbeadgirl
    funbeadgirl Member Posts: 181 Member
    #3
    radiation for vulvar cancer
    Hi there and sorry to hear about your recurrence of VC. I finished radiation for vulvar cancer just this past April, I too had 5 1/2 weeks of radiation, 5 days a week. It does not hurt in of itself, and yes, it is accumluative. I made it 4 1/2 weeks before I had burns, but I an olive skinned. My advice to you would be to use the gel, cream, whatever they give you, and to use it every day, as often as you can, it will condition the skin. It will not keep you from getting the burns, but healing will be much easier. Another tip: clothing, especially undergarments will be a challenge for you. I found that soft cotton knit pants, in 2 sizes larger than you would normally wear worked for me, and I just went without underwear for a time. That was a little hard to get used to, but it really is the only way to go. I also tried men's cotton boxers, but found them a bit bulky.I have read that air circulation on affected areas is important for the healing process. Also, you may want to get some cotton nightgowns, that way there will be no binding around your legs, etc.I lived in nightgowns when I was at home. You are younger than I, I am 56, but had not started menopause yet. Did they tell you that the radiation will basically put you into menopause? The treatments will affect your ovaries, so you will no longer have a period but you will get hot flashes, I was the past the average age of starting menopause, so I knew it would come sooner or later.Did anyone talk to you about other side affects relating to the radiation? For example intestinal, vaginally, etc.I would be glad to talk to you about that if you like, you could e mail me privately at jewelsbysuz@hotmail.com
    I have read some awful stories of what women have gone through with this cancer and treatments, but believe me there are those out there that have been successful in dealing with this. My VC was an adenocarcinoma, very rare for my age, and I was never able to find another person who had the same type of VC, so I understand the feeling of being alone with this terrible disease, that no one talks about, or even knows about.
    I wish you the very best as you go through your treatments, I will be thinking of you. Make a countdown calendar for yourself, and mark off each day, it is a HUGE accomplishment!
    I just had my PET/CT scan last week and saw radiation oncologist yesterday for my follow up. He said the scan looked good, except for a nodule on my thyroid, which he believes is nothing to worry about, but I will see a ENT to have it checked out. I also had my first 3 month follow up with GYN oncologist and everything was good, I hope to stay that way.
    Hang in there with the treatments, they will go fast and when you are past it you will realize how strong you are to be able to get through that...you can do anything!
    Best wishes, Sue
  • fightforit
    fightforit Member Posts: 11
    #4
    vulvar cancer
    I came to this site in 2006 with vulvar cancer. My gyn told me I was to young and it was rare. Everyone I talked to had no idea or desire to include another cancer. I could not find any support or out cry for research. Another cancer they do not want to talk about
  • pjeanscene
    pjeanscene Member Posts: 6
    #5
    fightforit said:

    vulvar cancer
    I came to this site in 2006 with vulvar cancer. My gyn told me I was to young and it was rare. Everyone I talked to had no idea or desire to include another cancer. I could not find any support or out cry for research. Another cancer they do not want to talk about

    VC is rare
    Yes, I was told it was rare and especially for my age group. (I was 42 when I was first diagnosed in 2003) My cancer is a squamous cell which is basically a skin cancer. Is this the type you have? Did they tell you it was HPV related? I had never even heard of HPV until after my diagnosis and only recently (2 years ago) was told that it was HPV related. Now we hear about HPV all the time!

    Feel free to check out WomenConqueringCancer.org That is the online support group that I joined almost 6 years. A great group of women with a wealth of information. I think I would have gone insane had I not had their support and knowledge at my fingertips!

    Where are you now with your treatment, remission, etc?

    Pam
  • pjeanscene
    pjeanscene Member Posts: 6
    #6
    beckyracn said:

    Pam,
    I'm so sorry to hear of
    Pam,
    I'm so sorry to hear of your recurrence:( You hit the five year mark...that's when the little bit of hope for no recurrence becomes a reality...and then BAM! I would have used something a little more aggressive than 'frustrating' to describe my feelings! You've been through so much already!!
    I've had the radiation, stage IV cervical, and although it feels like nothing...it accumulates. Everyone has different experiences.Hopefully yours will be smooth sailing. My prayer are with you. Know that you are not alone.

    Thanks
    Thanks, Becky!

    Yeah, I definately could have used some stronger words but didn't want to get booted!! LOL!

    Where are you now with your diagnosis? Did the treatments work and put you in remission?

    Pam
  • pjeanscene
    pjeanscene Member Posts: 6
    #7
    funbeadgirl said:

    radiation for vulvar cancer
    Hi there and sorry to hear about your recurrence of VC. I finished radiation for vulvar cancer just this past April, I too had 5 1/2 weeks of radiation, 5 days a week. It does not hurt in of itself, and yes, it is accumluative. I made it 4 1/2 weeks before I had burns, but I an olive skinned. My advice to you would be to use the gel, cream, whatever they give you, and to use it every day, as often as you can, it will condition the skin. It will not keep you from getting the burns, but healing will be much easier. Another tip: clothing, especially undergarments will be a challenge for you. I found that soft cotton knit pants, in 2 sizes larger than you would normally wear worked for me, and I just went without underwear for a time. That was a little hard to get used to, but it really is the only way to go. I also tried men's cotton boxers, but found them a bit bulky.I have read that air circulation on affected areas is important for the healing process. Also, you may want to get some cotton nightgowns, that way there will be no binding around your legs, etc.I lived in nightgowns when I was at home. You are younger than I, I am 56, but had not started menopause yet. Did they tell you that the radiation will basically put you into menopause? The treatments will affect your ovaries, so you will no longer have a period but you will get hot flashes, I was the past the average age of starting menopause, so I knew it would come sooner or later.Did anyone talk to you about other side affects relating to the radiation? For example intestinal, vaginally, etc.I would be glad to talk to you about that if you like, you could e mail me privately at jewelsbysuz@hotmail.com
    I have read some awful stories of what women have gone through with this cancer and treatments, but believe me there are those out there that have been successful in dealing with this. My VC was an adenocarcinoma, very rare for my age, and I was never able to find another person who had the same type of VC, so I understand the feeling of being alone with this terrible disease, that no one talks about, or even knows about.
    I wish you the very best as you go through your treatments, I will be thinking of you. Make a countdown calendar for yourself, and mark off each day, it is a HUGE accomplishment!
    I just had my PET/CT scan last week and saw radiation oncologist yesterday for my follow up. He said the scan looked good, except for a nodule on my thyroid, which he believes is nothing to worry about, but I will see a ENT to have it checked out. I also had my first 3 month follow up with GYN oncologist and everything was good, I hope to stay that way.
    Hang in there with the treatments, they will go fast and when you are past it you will realize how strong you are to be able to get through that...you can do anything!
    Best wishes, Sue

    Hi
    Sue,

    Glad to hear that your check ups have come out positive. That is great news!

    I had a complete hysterectomy with this last surgery. So, radiation or not, I'm in menopause!

    Thanks for the tips to get through radiation. I am currently STILL living in nightgowns from my surgery. My reconstruction incisions are easily irritated when I wear panties. The skin is very tight and itchy. I wonder if I should put vitamin E to help soften the skin so it won't feel so tight.

    Where do you live? I live in Ohio about 30 miles north of Dayton and have a wonderful gyn/onc! He's cute too!

    Pam
  • funbeadgirl
    funbeadgirl Member Posts: 181 Member
    #8
    itchy skin, etc.
    Hi Pam,
    I am so glad to hear you have a great doctor...I do too, my gyn oncologist is very on top of the game, he is a teacher of oncology and does many clinical trials so I have benefited greatly from that, and my radiation oncologist is also very good, I feel very comfortable with them both.So weird that all my doctors are younger than me:~ That is a good thing, especially with type of cancer, it could be embarassing, well , I guess it is embarassing, but only because no one knows about it. I plan on educating anyone that will listen to me!
    By the way I found some really great panties...made by Jockey, they are made from bamboo cotton,are breathable and they have just a tiny bit of stretch in them, and the opening at the leg is not tight.I would highly recommend them.
    The incision area will take a long time to heal, and I was told to lightly massage area to break up the scar tissue, I still have a small area I am working on. Ask your doctor what to use, I used the gel I was given for the radiation burns, since it was safe to use in that area. Now I use something called Liquid Silk, I order from drugstore.com, it is a lubricant, but safe also for that area. I have had some atrophy of the vagina, so now I am having to use a vaginal estrogen gel to restore PH balance, etc.I have a great women's health doctor for that, she specializes in treating sexual dysfunction in women that have gone through cancer treatment and women in menopause, which I am both now!
    I live 30 miles north of Milwaukee, Wisconsin... my doctors are in Milwaukee area,as is the hospital where I had my surgery. I am so grateful to have had the care I had, it really made it so much easier. My heart goes out to those that don't have the same opportunity, I just pray for all the ladies that will go through this.
    Take care, let me know how you do with your treatments, and honestly if you ever just want to talk, e mail me. Best wishes to you.
    Sue

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