Looking for Others with Vulvar Cancer

jtsmom0514
jtsmom0514 Member Posts: 6
in Gynecological Cancers (other than ovarian and uterine) #1
March 1, 2011 I was diagnosed with Stage IIIC vulvar cancer. This was quite a shock to all, as this is not a common cancer for someone my age. March 15, with God guiding the hands of the surgeons, I had a partial vulvectomy to remove the tumor and bilateral pelvic lymph nodes. The final pathology did show 4 out of 12 nodes on the right were positive, so radiation & chemo were necessary. 30 radiation treatment and 7 chemo treatments. Over all, the chemo was easy, no side effects and no set backs with low blood counts. Radiation, was another story. In the beginning, it was not so bad, but by week 3 my skin was starting to show signs of the very common, but very painful radiation burns. Men's boxer shorts became the norm if I had to go out anywhere, and a baggy nightgown at home to let air get to the area to help it heal. During this time, I had problems with a seroma (fluid collection) in my right groin where the lymph nodes were removed. Several times, the seroma needed to be drained and even got infected. To this day, I still have occasion pain around that area, but that is common and will probably have some degree of discomfort there for the rest of my life as my body tries to figure out what to do with the fluid it collects in that area.

Today, I am six months out from the surgery and my PET scan last week remains CANCER FREE!!!

If there is anyone out there that I can help to get through this, or answer any questions, please feel free to contact me. I am very open to questions about my cancer and want to "pay it forward" for all the people that helped me. If there is one person I can reach and make a difference in their life, that is my goal.
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Comments

  • funbeadgirl
    funbeadgirl Member Posts: 181 Member
    #2
    vulvar cancer
    I too had vulvar cancer Stage 3 in 2009, was yours adenocarcinoma or squamous? I recently found out mine metastasized to bone and will be facing chemo..what drugs did they use for you? I am at end of radiation now, I also had it in 2009 when first diagnosed, so I understand what you are describing as side effects. How old are you?
  • jtsmom0514
    jtsmom0514 Member Posts: 6
    #3
    funbeadgirl said:

    vulvar cancer
    I too had vulvar cancer Stage 3 in 2009, was yours adenocarcinoma or squamous? I recently found out mine metastasized to bone and will be facing chemo..what drugs did they use for you? I am at end of radiation now, I also had it in 2009 when first diagnosed, so I understand what you are describing as side effects. How old are you?

    vulvar cancer
    Hi there. It was a squamous cell carcinoma. So sorry to hear that yours has metastasized. I will be praying for good results for you. The chemo drug they used for me was Cisplatin and then the typical anti-nausea meds that they have go along with it. I am 40 years old. Never thought they would tell me I had cancer, but it was always in the back of my mind. For almost a year before I was diagnosed, they were treating me for a yeast infection since those were the symptoms I was having, but the cultures kept coming back negative for yeast, but at the time I did not have any lesions. It wasn't until December 2010 that the lesions surfaced, but they thought it was lichen sclerosis and it wasn't until February 2011 that it was finally biopsied and truly diagnosed.
  • Ruby3
    Ruby3 Member Posts: 30
    #4
    jtsmom0514 said:

    vulvar cancer
    Hi there. It was a squamous cell carcinoma. So sorry to hear that yours has metastasized. I will be praying for good results for you. The chemo drug they used for me was Cisplatin and then the typical anti-nausea meds that they have go along with it. I am 40 years old. Never thought they would tell me I had cancer, but it was always in the back of my mind. For almost a year before I was diagnosed, they were treating me for a yeast infection since those were the symptoms I was having, but the cultures kept coming back negative for yeast, but at the time I did not have any lesions. It wasn't until December 2010 that the lesions surfaced, but they thought it was lichen sclerosis and it wasn't until February 2011 that it was finally biopsied and truly diagnosed.

    PET SCAN
    Hi there. I would like to know how they do a PET scan. I am in South Africa and they told me that they cannot scan or exray the area where the cancer was and of course blood tests do not show it either. When I asked how I will know if the cancer is gone and they said I wouldn't. I would just have to watch for any more growths. I am very positive but somehow I feel that they did not get all the cancer. I had 28 radiation treatments and know exactly what you are talking about re side effects. In fact I am still battling side effects. I got a haemmoroid which bleeds all the time and is really painful.

    I am so pleased to hear that you are cancer free. I wish that I could know where I stand with it because I think it is worse not knowing.

    All the best to you and I am also praying for funbeadgirl.
  • jtsmom0514
    jtsmom0514 Member Posts: 6
    #5
    Ruby3 said:

    PET SCAN
    Hi there. I would like to know how they do a PET scan. I am in South Africa and they told me that they cannot scan or exray the area where the cancer was and of course blood tests do not show it either. When I asked how I will know if the cancer is gone and they said I wouldn't. I would just have to watch for any more growths. I am very positive but somehow I feel that they did not get all the cancer. I had 28 radiation treatments and know exactly what you are talking about re side effects. In fact I am still battling side effects. I got a haemmoroid which bleeds all the time and is really painful.

    I am so pleased to hear that you are cancer free. I wish that I could know where I stand with it because I think it is worse not knowing.

    All the best to you and I am also praying for funbeadgirl.

    Hi Ruby 3. I am in Northern Wisconsin, USA. The PET scan is similar to a CT scan, where you are slid into a machine that takes images of your body. My scan went from my chin to my knees and shows "hot spots" where there are potential changes. A PET scan detects changes in cellular function, these changes take place before physical changes occur, so can hopefully help your Doctor to make an early diagnosis. (that last sentence came right from the brochure I have for PET scans).

    Completely agree that the not knowing is worse. Every 3 months when I am waiting for my scan results, I get very nervous and anxious.

    All the best to you, and I hope you are able to get some answers.
  • Wendy Segler
    Wendy Segler Member Posts: 46
    #6
    jtsmom0514 said:

    vulvar cancer
    Hi there. It was a squamous cell carcinoma. So sorry to hear that yours has metastasized. I will be praying for good results for you. The chemo drug they used for me was Cisplatin and then the typical anti-nausea meds that they have go along with it. I am 40 years old. Never thought they would tell me I had cancer, but it was always in the back of my mind. For almost a year before I was diagnosed, they were treating me for a yeast infection since those were the symptoms I was having, but the cultures kept coming back negative for yeast, but at the time I did not have any lesions. It wasn't until December 2010 that the lesions surfaced, but they thought it was lichen sclerosis and it wasn't until February 2011 that it was finally biopsied and truly diagnosed.

    Vulvar cancer
    Hi, I left a message for you on one of the other boards. Email me at Wendysegler12@gmail.com, this is also open for any of you to email me. T o it's, I just read the part about being diagnosed with lichen slerosis, Your dealings were so much like mine. Kept saying yeast infections, then a female doc. Noticed white on the vulva, had diagnosis of lichen slerosis which went into squamous cell carcinoma, then Vulvar cancer. Recently, nine years later, biopsy says actinic keritosis, a pre-cancer. But, now I have been extremely itchy on the vulva as well as of the rectum,so am very apprehensive that it is the squamous cell returning. I sure hope I am wrong! I see my cancer doc. Tues. Oct.25, two more days, probably get a biopsy then and wait for results to know where I stand. Would very much appreciate all the prayers I can get. FINGERS CROSSED. Many blessings to you all PS I forgot to mention over nine years ago I had a radical vulvectomy and lymph nodes removed in both legs. Wendy Segler
  • jtsmom0514
    jtsmom0514 Member Posts: 6
    #7
    Wendy Segler said:

    Vulvar cancer
    Hi, I left a message for you on one of the other boards. Email me at Wendysegler12@gmail.com, this is also open for any of you to email me. T o it's, I just read the part about being diagnosed with lichen slerosis, Your dealings were so much like mine. Kept saying yeast infections, then a female doc. Noticed white on the vulva, had diagnosis of lichen slerosis which went into squamous cell carcinoma, then Vulvar cancer. Recently, nine years later, biopsy says actinic keritosis, a pre-cancer. But, now I have been extremely itchy on the vulva as well as of the rectum,so am very apprehensive that it is the squamous cell returning. I sure hope I am wrong! I see my cancer doc. Tues. Oct.25, two more days, probably get a biopsy then and wait for results to know where I stand. Would very much appreciate all the prayers I can get. FINGERS CROSSED. Many blessings to you all PS I forgot to mention over nine years ago I had a radical vulvectomy and lymph nodes removed in both legs. Wendy Segler

    Wendy-many many many prayers
    Wendy-many many many prayers will be coming your way for good news. There is power in prayer and I definitely felt that while I was recovering from surgery and then going through chemo and radiation. Please feel free to email me anytime. jtsmom@chibardun.net
    Please keep me posted after your appt on Tuesday.

    Hugs!! Pam
  • ppaseka
    ppaseka Member Posts: 70
    #8
    Bartholins
    My wife is having a partial vulvectomy on Tuesday. They will be removing the area around her right bartholin gland, lymph nodes in both groins, and in the illiac region of her pelvis due to stage 3 cancer of the Bartholins. She is scared to death that she will not be able to resume intercourse. She is 44 years old and sex is still very important to her. We have to do radiation. For 5 weeks five times a week. Any input that would be helpful.
  • funbeadgirl
    funbeadgirl Member Posts: 181 Member
    #9
    ppaseka said:

    Bartholins
    My wife is having a partial vulvectomy on Tuesday. They will be removing the area around her right bartholin gland, lymph nodes in both groins, and in the illiac region of her pelvis due to stage 3 cancer of the Bartholins. She is scared to death that she will not be able to resume intercourse. She is 44 years old and sex is still very important to her. We have to do radiation. For 5 weeks five times a week. Any input that would be helpful.

    what the future holds...
    I spoke to you on a previous thread re: vulvar cancer, I truly hope for all to go well with your wife's surgery this week. As far as intimate issues go, it is possible, but does require education and patience. I would recommend that your wife talk to her gyn/onco about these issues as well as the radiation onco, please do not be shy or embarrassed.There are women's health specialists that can help her with the emotional and mechanics of these issues. I would encourage you too, to be involved in learning about the issues that come upon a woman when she goes through this life altering process.Take your time to get through the surgical process,radiation treatments and healing and remember that intimacy can take many forms.My very best to you and your wife.Remember the first 3 letters of cancer are CAN...you CAN get through this!
  • juliamary
    juliamary Member Posts: 11
    #10
    ppaseka said:

    Bartholins
    My wife is having a partial vulvectomy on Tuesday. They will be removing the area around her right bartholin gland, lymph nodes in both groins, and in the illiac region of her pelvis due to stage 3 cancer of the Bartholins. She is scared to death that she will not be able to resume intercourse. She is 44 years old and sex is still very important to her. We have to do radiation. For 5 weeks five times a week. Any input that would be helpful.

    Bartholins
    Hi,
    Iam new to this site, but i have had exactly what your wife has got, i finished radiotherapy 5 months ago and have resumed a sex lfe with my husband it is still a little uncomfortable and after the radio she will not want to know, but it will get better, it is a very sensitive area and i am still very tender in the pelvic and groin area. who knows how long that will go on for.
  • ppaseka
    ppaseka Member Posts: 70
    #11
    juliamary said:

    Bartholins
    Hi,
    Iam new to this site, but i have had exactly what your wife has got, i finished radiotherapy 5 months ago and have resumed a sex lfe with my husband it is still a little uncomfortable and after the radio she will not want to know, but it will get better, it is a very sensitive area and i am still very tender in the pelvic and groin area. who knows how long that will go on for.

    Bartholins
    My wife is recovering after her surgery this morning. She is about 8hours post op now. They did not have to do a vulvectomy. The tumor in her Bartholin gland was deeper than anticipated and they were able to get it with an incision and still get clear margins. Also the lymph nodes in her groin and illiac region were removed with some confidence of clear margins also. We will know more tomorrow after pathology comes back for sure. She is resting comfortably right now.
  • Ruby3
    Ruby3 Member Posts: 30
    #12
    jtsmom0514 said:

    Hi Ruby 3. I am in Northern Wisconsin, USA. The PET scan is similar to a CT scan, where you are slid into a machine that takes images of your body. My scan went from my chin to my knees and shows "hot spots" where there are potential changes. A PET scan detects changes in cellular function, these changes take place before physical changes occur, so can hopefully help your Doctor to make an early diagnosis. (that last sentence came right from the brochure I have for PET scans).

    Completely agree that the not knowing is worse. Every 3 months when I am waiting for my scan results, I get very nervous and anxious.

    All the best to you, and I hope you are able to get some answers.

    Thanks
    Thank you for the explanation on PET scans. I have an appointment at the hospital early in January and I will ask the specialist about this. Thanks a mil.
  • Ruby3
    Ruby3 Member Posts: 30
    #13
    Wendy Segler said:

    Vulvar cancer
    Hi, I left a message for you on one of the other boards. Email me at Wendysegler12@gmail.com, this is also open for any of you to email me. T o it's, I just read the part about being diagnosed with lichen slerosis, Your dealings were so much like mine. Kept saying yeast infections, then a female doc. Noticed white on the vulva, had diagnosis of lichen slerosis which went into squamous cell carcinoma, then Vulvar cancer. Recently, nine years later, biopsy says actinic keritosis, a pre-cancer. But, now I have been extremely itchy on the vulva as well as of the rectum,so am very apprehensive that it is the squamous cell returning. I sure hope I am wrong! I see my cancer doc. Tues. Oct.25, two more days, probably get a biopsy then and wait for results to know where I stand. Would very much appreciate all the prayers I can get. FINGERS CROSSED. Many blessings to you all PS I forgot to mention over nine years ago I had a radical vulvectomy and lymph nodes removed in both legs. Wendy Segler

    Email
    Hi Wendy. I emailed you shortly after I received your mail but I don't think you received it. I will try again. I do hope that your biopsies went well. Let us know. I'm keeping everyone in my prayers.
  • Ruby3
    Ruby3 Member Posts: 30
    #14
    funbeadgirl said:

    what the future holds...
    I spoke to you on a previous thread re: vulvar cancer, I truly hope for all to go well with your wife's surgery this week. As far as intimate issues go, it is possible, but does require education and patience. I would recommend that your wife talk to her gyn/onco about these issues as well as the radiation onco, please do not be shy or embarrassed.There are women's health specialists that can help her with the emotional and mechanics of these issues. I would encourage you too, to be involved in learning about the issues that come upon a woman when she goes through this life altering process.Take your time to get through the surgical process,radiation treatments and healing and remember that intimacy can take many forms.My very best to you and your wife.Remember the first 3 letters of cancer are CAN...you CAN get through this!

    FANTASTIC
    You are fantastic. You always give such good advice to everybody and you are going through such difficult times yourself. Thank you for your caring and encouragement. Hope you have people giving you lots of encouragement too! All the best.
  • Ruby3
    Ruby3 Member Posts: 30
    #15
    ppaseka said:

    Bartholins
    My wife is recovering after her surgery this morning. She is about 8hours post op now. They did not have to do a vulvectomy. The tumor in her Bartholin gland was deeper than anticipated and they were able to get it with an incision and still get clear margins. Also the lymph nodes in her groin and illiac region were removed with some confidence of clear margins also. We will know more tomorrow after pathology comes back for sure. She is resting comfortably right now.

    Bartholin Gland Cancer
    I too was diagnosed with Bartholin Gland Cancer last December. I had the bartholin gland right hand side removed last December and in Feb the lymph nodes on the right hand side. In May they decided to go back to the bartholin gland area as there were still cancer cells. They were going to do a vulvectomy right hand side but decided not to do so. Radiation for 28 days was very difficult with lots of side effects. I hope that you wife is doing well.
  • Ruby3
    Ruby3 Member Posts: 30
    #16
    ppaseka said:

    Bartholins
    My wife is recovering after her surgery this morning. She is about 8hours post op now. They did not have to do a vulvectomy. The tumor in her Bartholin gland was deeper than anticipated and they were able to get it with an incision and still get clear margins. Also the lymph nodes in her groin and illiac region were removed with some confidence of clear margins also. We will know more tomorrow after pathology comes back for sure. She is resting comfortably right now.

    Bartholin Gland Cancer
    I too was diagnosed with Bartholin Gland Cancer last December. I had the bartholin gland right hand side removed last December and in Feb the lymph nodes on the right hand side. In May they decided to go back to the bartholin gland area as there were still cancer cells. They were going to do a vulvectomy right hand side but decided not to do so. Radiation for 28 days was very difficult with lots of side effects. I hope that your wife is doing well.
  • juliamary
    juliamary Member Posts: 11
    #17
    Ruby3 said:

    Bartholin Gland Cancer
    I too was diagnosed with Bartholin Gland Cancer last December. I had the bartholin gland right hand side removed last December and in Feb the lymph nodes on the right hand side. In May they decided to go back to the bartholin gland area as there were still cancer cells. They were going to do a vulvectomy right hand side but decided not to do so. Radiation for 28 days was very difficult with lots of side effects. I hope that your wife is doing well.

    Bartholin Gland Cancer
    Hi Ruby3
    I to had bartholin gland cancer, also diagonsed in december. it had spread to lympth nodes both sides, so like you had radiotherapy for 30 weeks and chemo, the radio was awefull, what side effects are you haveing? i am still having side effects now, pains in muscles and very tender in the pelvis and groin area and still feeling very tired, i can be o.k for a while, then hit a slump, like at the moment, sooo tired.
    Do let me know how you are getting on,
    Julia xx
  • juliamary
    juliamary Member Posts: 11
    #18
    ppaseka said:

    Bartholins
    My wife is recovering after her surgery this morning. She is about 8hours post op now. They did not have to do a vulvectomy. The tumor in her Bartholin gland was deeper than anticipated and they were able to get it with an incision and still get clear margins. Also the lymph nodes in her groin and illiac region were removed with some confidence of clear margins also. We will know more tomorrow after pathology comes back for sure. She is resting comfortably right now.

    Bartholins
    Hi THERE, HOW IS YOUR WIFE?
  • funbeadgirl
    funbeadgirl Member Posts: 181 Member
    #19
    Ruby3 said:

    FANTASTIC
    You are fantastic. You always give such good advice to everybody and you are going through such difficult times yourself. Thank you for your caring and encouragement. Hope you have people giving you lots of encouragement too! All the best.

    Doing well, thanks
    Thank you Ruby3 for your kind words, I do have a great support system. As I read through the posts regarding vulvar cancer, my heart breaks and I get mad all at the same time! I get mad because while VC is a rare cancer,so many more women are becoming affected by this disease. There is not enough education out there for women. Doctors need more education too. My heart breaks when I hear that a women feels 'dirty' because she has vulvar cancer and is embarrassed to tell anyone that is her diagnosis. As far as I am concerned it doesn't matter how or why you get cancer, what matters is how to cope once you hear the words 'you have cancer.' Cancer is non discriminatory, people who do all the 'right things' still get cancer, and some people who do the 'wrong' things never get cancer..really??? Does it matter? There is no 'right' or 'wrong'. Cancer is a problem in the DNA.Honestly I could get on a soap box about this at the town square!Where is the compassion?
    I am doing well right now, I had first chemo on Nov. 10th, had a bad reaction to the Taxol and a worse reaction to the Neulasta, hopefully we can prevent that next time. I was very sick for about 4 days and then started feeling better. Today I went back to work for 3 hours, walked for 30 minutes, had my son and his family over for dinner and did all the dishes myself ( no dishwasher).
    I live my life with much faith and hope and I give thanksgiving every day for the life I have. My goal through all I have endured over past 3 years is to be able to extend a hand of compassion and understanding to other women. If I could do that for even just one other person, what I have gone through will be worth it.
    Vulvar cancer, VIN, etc., all the gyn related issues have a greater impact than just the physical part, it does something to you mentally and emotionally. Everyone will react differently, but there are so many issues that can occur because of VC. There are bits and pieces of information out there, but you have to really dig to find it. There also must be more information for support in the families, especially husbands, to help them to deal with the issues too.
    I believe the first thing we all have to do is overcome the fear of saying the word 'vulva'.Did you know that it is important to do a monthly self exam on the vulva? Tell every woman you know, and tell her to tell other women.
  • ppaseka
    ppaseka Member Posts: 70
    #20
    juliamary said:

    Bartholins
    Hi THERE, HOW IS YOUR WIFE?

    Bartholins
    She is now 2 1/2 weeks post surgery. The lymph nodes in both groins and in the illiac region were as involved as PET scan showed. The were able to remove the tumor in her Bartholins without doing the partial vulvectomy. The tumor was deeper than expected so they were to remove it with clear margins and not removing the surface skin. Still has one drain tube. Her bottom is healing well. The gapping wound along side of her vagina is closing well. We were in the hospital for three full days after surgery. We meet with the radiologist on Dec. 2 to discuss radiation and chemotherapy. Taking it one day at a time and she has a very positive outlook.
  • ppaseka
    ppaseka Member Posts: 70
    #21
    ppaseka said:

    Bartholins
    She is now 2 1/2 weeks post surgery. The lymph nodes in both groins and in the illiac region were as involved as PET scan showed. The were able to remove the tumor in her Bartholins without doing the partial vulvectomy. The tumor was deeper than expected so they were to remove it with clear margins and not removing the surface skin. Still has one drain tube. Her bottom is healing well. The gapping wound along side of her vagina is closing well. We were in the hospital for three full days after surgery. We meet with the radiologist on Dec. 2 to discuss radiation and chemotherapy. Taking it one day at a time and she has a very positive outlook.

    Bartholins Gland
    Just an update. My wife Cheryl finished 28 radiation and six chemo treatments on Feb.6 and we started chemo again on Feb. 24. The worst part about the radiation was the diarrhea. No matter what she did, it just wouldn't clear up. It did end within 4 days of radiation ending. The rad onc was amazed at how she handled radiation. They used IMRT 6x radiation. The rad onc said that this is cutting edge and is why she has done so well. The chemo was handled well the first time and hopefully she will handle It well this time.

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