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Looking for Others with Vulvar Cancer

jtsmom0514
Posts: 6
Joined: Oct 2011

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.

funbeadgirl
Posts: 181
Joined: Jan 2009

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
Posts: 6
Joined: Oct 2011

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
Posts: 30
Joined: Dec 2010

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
Posts: 6
Joined: Oct 2011

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.

Ruby3
Posts: 30
Joined: Dec 2010

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.

Wendy Segler
Posts: 46
Joined: Sep 2011

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
Posts: 6
Joined: Oct 2011

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

Ruby3
Posts: 30
Joined: Dec 2010

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.

ppaseka's picture
ppaseka
Posts: 69
Joined: Oct 2011

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
Posts: 181
Joined: Jan 2009

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!

Ruby3
Posts: 30
Joined: Dec 2010

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.

funbeadgirl
Posts: 181
Joined: Jan 2009

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.

juliamary
Posts: 11
Joined: Nov 2011

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's picture
ppaseka
Posts: 69
Joined: Oct 2011

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
Posts: 30
Joined: Dec 2010

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
Posts: 30
Joined: Dec 2010

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
Posts: 11
Joined: Nov 2011

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
Posts: 11
Joined: Nov 2011

Hi THERE, HOW IS YOUR WIFE?

ppaseka's picture
ppaseka
Posts: 69
Joined: Oct 2011

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's picture
ppaseka
Posts: 69
Joined: Oct 2011

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.

funbeadgirl
Posts: 181
Joined: Jan 2009

I have been wondering how your wife has been doing,and I am happy to hear that she was able to receive the IMRT radiation, not all facilities have that capability.Completing radiation is a milestone and she can feel like she has accomplished something by getting through it. I hope for the best with her chemotherapy treatments. This Thursday I will have my final chemo and I am so happy to put that behind me. It has been very hard, usually sick for about 4-5 days, but then feeling better after that and able to do most anything I want to, albeit at a slower pace!
You seem to be a very supportive and caring husband, Cheryl is blessed to have you, and I hope that you too are doing well. Caregivers experience the cancer journey different from the patient, I almost think in some ways it is harder.My husband and I have been dealing with my cancers for 3 years now, and it has taken a toll on him but we have great hope that this time I will finally get a clear scan and can be done with all of this.
My best wishes to you and your wife, continue in your obvious close relationship with each other and believe that soon all will be well.

funbeadgirl
Posts: 181
Joined: Jan 2009

I have been wondering how your wife has been doing,and I am happy to hear that she was able to receive the IMRT radiation, not all facilities have that capability.Completing radiation is a milestone and she can feel like she has accomplished something by getting through it. I hope for the best with her chemotherapy treatments. This Thursday I will have my final chemo and I am so happy to put that behind me. It has been very hard, usually sick for about 4-5 days, but then feeling better after that and able to do most anything I want to, albeit at a slower pace!
You seem to be a very supportive and caring husband, Cheryl is blessed to have you, and I hope that you too are doing well. Caregivers experience the cancer journey different from the patient, I almost think in some ways it is harder.My husband and I have been dealing with my cancers for 3 years now, and it has taken a toll on him but we have great hope that this time I will finally get a clear scan and can be done with all of this.
My best wishes to you and your wife, continue in your obvious close relationship with each other and believe that soon all will be well.

Sue12
Posts: 4
Joined: Oct 2011

Hi,
I too have Bartholin gland ca. It was in one lymph node. I had a radical vulvectomy Nov last yr and now receiving brachytherapy to an area where they did not get 'clear margins'. The wound has still not healed from the surgery. in fact there is an area of the wound that they want to biopsy because they are a little suspicious. I am trying to be brave but i am scared. It is such a sacrifice to have this surgery but if it has come back already i will not believe it. My body has not even recovered from the vulvectomy. Has anyone has recurrences of culcar cancer and been treated? I wish everyone all good health and fast recoveries. These are the biggest challenges in life. blessings, sue

funbeadgirl
Posts: 181
Joined: Jan 2009

Hi Sue,
Each one of us that has a form of vulvar cancer will experience it differently, from diagnosis, cell type, advancement of disease, treatments, etc.My VC was an adenocarcinoma, which means it originated in glandular tissue. I had a partial radical vulvectomy in Jan 2009 with 1 lymph node positive, so I had radiation for 28 treatments and recently it metastasized to my right femur bone. That tumor was removed and another round of radiation and just last Thursday I had my last chemo treatment. It has been a rough road, but I have taken it one doctor appointment, one procedure, and one treatment at a time. I expect that I will have a full recovery, mostly because that is what I want, but docs treated me very aggressively, so I have the best outcome.
You will heal from your surgery, it is better to know for sure, so be brave you CAN get through this. Your wound has probably not healed up completely because of the brachytherapy, once that is done your body can get into a continuous healing process. I say that because right after my surgery I had radiation, then when that was done, I started chemo 2 weeks later, my body keeps getting shot down every three weeks, so now that I am done, I know I will heal better and without interruption.
Yes, these are huge challenges to face, but remember that the greater the challenge...the greater the victory!My best to you.

Strongmom325
Posts: 3
Joined: Apr 2012

I am so relieved to find this message board...I too was diagnosed with stage III vulvar cancer in 2010. I was 30 years old & 8 months pregnant with my first child. I was obviously scared to death. Six weeks after having my daughter I had surgery to remove lesion and also lymph nodes in groin. One lymph node was positive and so 6 weeks later I started radiation for 6 weeks. It has been 2 years and now I recently have been experiencing itching & irritation of the vulva. I'm so scared that perhaps the cancer has returned?? How do I know if that is the case or if it is simply a yeast infection or something? I really don't think it is a yeast infection :(. Any advice would be welcome...I feel a bit alone in this and sort of like I'm crazy because it seems like nobody understands what I'm feeling and that maybe I am over reacting, but I just have this feeling that the cancer may not be gone. Thanks for any input or advice, your stories & words of wisdom are so helpful.

funbeadgirl
Posts: 181
Joined: Jan 2009

Dear Stongmmom,
The only way to know for sure what is going on is to go in to see the doctor. It could be an irritation from a laundry soap, too tight elastic around leg, etc. Your doc should at least be aware of what is happening. You are not over reacting either, once cancer is a part of your vocabulary, it is a concern for your future health. The sooner you have it checked out, the sooner your fears can be calmed and if it is a recurrence, well then the sooner you know that, the more proactive you can be. You are so young and have many years left to live, and you will live them with your child.
I too had stage 3 vulvar adenocarcinoma with 1 positive lymph node and had pelvic radiation, so I do know where you have been, and where you are now.

Strongmom325
Posts: 3
Joined: Apr 2012

Thanks so much for your response. I have an appt tomorrow so they can check it out.I'm hoping for peace of mind because I am currently worrying myself to death. I will be 2 yrs cancer free this august and I never want to go through that again. It's so helpful to know there are others out there who can relate to what I'm feeling. I will keep you posted!

Strongmom325
Posts: 3
Joined: Apr 2012

So I saw my oncologist today and she did a colopscopy and lots of white showed up. She did a punch biopsy but I probably won't hear anything until Monday :(. Here's to prayers & lots of positive thoughts!

ppaseka's picture
ppaseka
Posts: 69
Joined: Oct 2011

We will be praying for good results.

onetoughcookie
Posts: 1
Joined: Jun 2012

Hi! Is there anyone out there that has fibrosarcoma arising from dermatofibrosarcoma protuberans (DFSP-FS) of the vulva? I was recently diagnosed and will have a surgical consultation in a couple of weeks with a GYN Oncologist. I've had a small nodule since I was 18 years old near my labia and it had steadily increased in size over the years to about the size of a walnut when removed. Multiple doctors said it was nothing to worry about...just a cyst. It is a rare diagnosis, as are so many I'm reading about. I just would like to find someone that has been there or is going through similar circumstances. Give me a shout out about your story. I'll keep you all in my prayers!

Wendy Segler
Posts: 46
Joined: Sep 2011

Hi strong mom, I would like to hear how you are doing with whatever findings they found for you. I have white areas on my vulva and anal area. It was diagnosed as lichen sclerosis. Can you please email me at Wendysegler12@gmail.com. Look forward to hearing from you! Wendy

joyess1's picture
joyess1
Posts: 2
Joined: Jul 2005

Hi, don't know if I am posting correctly. I have a biopsy this Wed. July 11, 2012. I found a "lump" just to the right of my clitoris but the doctor says it is a lesion or "hole" w a white ring around it. I went to the doctor in December of 2011 for profuse labial bleeding and she commented then that there was this lesion that if it didn't go away I should see a gyn. The bleeding stopped and most of the itching and burning with oral antifungal meds but I also was battling for 3 months a UTI. 3 rounds of antibiotics and several doses of antifungal meds later my life was by then in upheaval. My mother was put on hospice, my husband and I decided to get back together and move together to the state in which my mom lives and my brain kept feeling broken. I forgt everything when it is newly happening but still remember the past okay. I have sudden attacks of rage that are so out of character for me. They are blinding and all out of proportion to any provocation. I was even hospitalized in a psych unit after one outburst in front of a therapist. I was told then about the UTI and they said that UTIs are the most common cause of dementia in older women. But I am only 56. Still I left the psych unit AMA because the psychiatrist was so ignorant that she couldn't even remember why I was in the hospital in the first place. With our move, we ended up in an illegal rental situation and after 2 weeks had to move to temporary apt. from where we hope we are moving to a permanent home in 9 days. We have stuff in 4 locations now (my sister's house, the temp. apt. and 2 stoarage lockers) to move to the one place! But we have no money to pay movers or for a truck and we are both disabled so we can't do it ourselves. Meanthwhile, by moving back together and letting Social Security know, I am losing all my income as he makes too much ($1300/mo.)! I have federal midical insurance (not Medicare) that isn't accepted by the doctor I first went to since moving. I had pretty much forgotten about the lesion until I found the "lump". The gyn said she is pretty sure it is vulvar cancer but wanted to wait 3 weeks for a biopsy. I found a different gyn who would take my new insurance and asked to have one right away.

I am a 12 year survivor of renal cell carcinoma (stage 2, had right kidney removed) and a 26 yr survivor of benign myomas in my uterus, stage 4 pre-cancer of my cervix and polycystic ovaries requiring a total hysterectomy.

jeankchome
Posts: 3
Joined: Oct 2012

I know it was awhile ago when your wife had vulvectory but I am curious as to how she is doing.  I am 43 and had a partial radical vulvectomy to remove bartholin gland and 2 lymph nodes.  I had Chemotherapy Cisplatin and 28 Radiation treatments.  How has life been since finishing her treatment, any major side effects?

katgirl67
Posts: 1
Joined: Jul 2012

Hi there; I'm new to this site so I'm still learning how to manouever around it...my mom had a vulvectomy last September and she did quite well after the surgery and 8 weeks of radiation. She then had a lymph node removed this past March and the healing process has been slow (she is diabetic) but steady. She had a CAT scan about 2 months ago and there is no eveidence of reoccurance. However, for about the last 5-6 weeks the discomfort she has been experiencing down there is so bad she is not able to sit long enough to eat her meals even. She does dialysis twice a week and it really takes the good right out of her after sitting for 3 1/2 hours there. She has had two visits with a GYN and both have told her it is just because of the process of being cut, then burned and of course the slower healing process because of the diabetes.She is using xylocaine gel, premarin cream and lidocain spray that gives her some relief for a short period of time. A few days ago they put her on dilaudid to manage the pain. It kills me to see her in such a way and I was wondering if anyone else has experienced this and what, if anything else can be done. Thanks for listening!

Kathy

jeankchome
Posts: 3
Joined: Oct 2012

I was so happy to read about these stories since it is such a rare cancer. I was just diagnosed with Squamous Cell Carcinoma of the Bartholin Gland and Lymph nodes. I do not know what stage I am at until I see the specialist in 2 weeks. I am scared because I think I am about a stage III and survival rate is not very good. I am an emotional wreck right now, I only found out yesterday. My biggest problem right now is I keep getting sick with other things such as colds, flu, bronchitis, etc., because my body can't fight the cancer and everything else. Any advice on how to deal with or help prevent getting sick all the time. Thank you, Jean

ppaseka's picture
ppaseka
Posts: 69
Joined: Oct 2011

My wife has the same. Of the 28 nodes removed, 13 were cancerous. Don't look at statistics. They really don't mean much but they scare the bejesus out of you. My wife was dx on Oct. 12, 2011. We are six months post treatment with NED at first scan in June.

beachlady54
Posts: 1
Joined: Nov 2012

Hello,
I had a vulvectomy on Oct. 11, 2012...they removed most of my left labias and some on the right. And they removed the clitoris...It has been a month and I am still trying to heal..I am going in for bilateral node dissection on Nov. 8th. They are also doing a cystoscopy and proctoscopy to check the rectum and bladder. I am getting very nervous and scared about this next surgery...I am hoping beyond hope that none of the nodes are positive but there is that chance. My oncologist is doing the surgery laparoscopically...Was yours done that way? He is a very good surgeon. I was very pleased knowing this because the incisions are smaller and healing time is faster...I could be out the next day or within 3 days, depending on the output of the lymphatic fluid. I have heard all kinds of horror stories about the lymphedema and the side affects from the radiation...should I look into Protocel 50? I hate the idea of getting burns in that area...yuck! Well, anyway I really need support with dealing with this next surgery, and the type of recovery you go thru...did you get the node test results soon after? My son is even leaving his job in Germany to come back to the states to be closer to me...
thanks,
Vicki

ppaseka's picture
ppaseka
Posts: 69
Joined: Oct 2011

They removed my wife's nodes at the sane time as her vulvectomy. They made "hockey stick" incisions on each side from her groin to the tip of each hip bone. She came out of surgery with about 22" of incisions. Chemo wasn't too bad, but radiation was bad. She has had cellulitous now four times since surgery from the lymphedema in her legs and pelvis.

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