Looking for Others with Vulvar Cancer
Comments
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Congratulations to Cherlyppaseka said: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.
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.0 -
Congratulations to Cherylppaseka said: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.
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.0 -
vulvar cancer possible recurrencefunbeadgirl said:Congratulations to Cheryl
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.
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, sue0 -
Challenge=Victory!Sue12 said:vulvar cancer possible recurrence
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
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.0 -
So glad to find thisfunbeadgirl said:Challenge=Victory!
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.
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. 0 -
The only wayStrongmom325 said:So glad to find this
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.
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.0 -
Appt. tomorrowfunbeadgirl said:The only way
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.
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!0 -
Saw dct todayStrongmom325 said:Appt. tomorrow
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!
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! 0 -
prayingStrongmom325 said:Saw dct today
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!
We will be praying for good results.0 -
DSFP-FS of vulvappaseka said:praying
We will be praying for good results.
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!0 -
CancerStrongmom325 said:Saw dct today
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!
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! Wendy0 -
New and unsureWendy Segler said:Cancer
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
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.0 -
Skin irritation
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!
Kathy0 -
I was so happy to read about
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, Jean0 -
Bartholin Glandjeankchome said:I was so happy to read about
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
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.0 -
vulvar cancer- next surgery
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,
Vicki0 -
Bartholins Glandbeachlady54 said:vulvar cancer- next surgery
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
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.0 -
Bartholinppaseka 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.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?
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Hello, I know it has been ajeankchome said:I was so happy to read about
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, JeanHello, I know it has been a while since this was posted. I have a hard mass in my bartholin gland and was wondering what your symptoms were prior to diagnosis. I hope all is well for you now!
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