Vulvar Cancer

Westnp1

I was diagnosed with stage 3 vulvar cancer a few years ago. Wanted to start a discussion with anyone about this, as we are a rare group and Id like to know your story.

JanuaryDaybreak

Welcome!

Some of us have threads about our experiences, and I'm sure any of us would be glad to talk about specific aspects of vulvar cancer.  If you could repeat your story here, it'll give us a starting point.  Especially, I'm interested to know how you're dealing with vulvar cancer now, and how long it took to diagnose.  Are you still in treatment, or is the cancer in remission?

JLDubbs

Writing for Mom - Stage 4

Hello!

My 77 y/o Mother was finally Dx in December 2015 (by a dermatolgist, her GYN didn't know what to do with her). She had a radical vulvectomy the following January and post-op complcations kept her in the hospital and in rehab for 6-7 months. We saught 2 lawyers, both didn't want to take her case. "She didn't die" and "It's complicated in NJ" was what we heard. Unfortunately the cancer spread to the nearest node, so we prepared her for surgery by building her up (through Complimentary & Integrative medicine). Node removal was on 12/20/2016 and radiation & chemo began late January 2017. She complained of hip/leg pain starting sometime in Febuary, and after getting whisked off to "Pain Management" and 2 ER visits, they finally did an MRI of her pelvis & spine which showed a small tumor in her hip socket. She completes her 2nd round of radiation this Wednesday. Her Oncologist, in my opinion has no idea what to do and is pretty laxed in her treatment, never mind not thinking OUTSIDE the box. Thank you for creating this thread on a seemingly ignored rare cancer. 

I created a Go Fund Me account last year to help with the costs of alternative treatments and I go into many more details about her journey there. Should you like to read more about it: <Content Removed by CSN>

(I am in no way trying to solicit donations, here. Telling the story over and over in verbal and written form has just gotten tiring). 

Any advice or survivors here? Thanks for listening. 

Warmly,

Jamie

JanuaryDaybreak

Jamie, I'd share your story

Jamie, I'd share your story with an oncology social worker so that she can advise you of financial options.  I'm so sorry that this happened to your mother.  At the very least, her quality of life suffered because of these complications.  Especially worrisome is that the doctors wouldn't listen when she kept complaining of pain.  

And by all means, look for a new oncologist, preferably a gynecologic oncologist.  Some oncologists aren't totally comfortable with gynecologic cancers, so they haven't spent as much time with patients like your mother.  Your local hospital should be able to recommend one.

All the best,

me

 

frightenedlady74

JanuaryDaybreak said:

Welcome!

Some of us have threads about our experiences, and I'm sure any of us would be glad to talk about specific aspects of vulvar cancer.  If you could repeat your story here, it'll give us a starting point.  Especially, I'm interested to know how you're dealing with vulvar cancer now, and how long it took to diagnose.  Are you still in treatment, or is the cancer in remission?

have had a partial vulvectomy

have had a partial vulvectomy on 9/11/17 which came back with cancer invading the margin-having a pet scan today and seeing a oncology radiologist on oct 5th-then they (the surgeon and the radiologist) will come up with a treatment plan.  I didn't have too bad a time with the surgery but I am pretty scared about radiation on that area-has anyone had this done-how painful is it.  I am 74 and they seem to think at this point this can be cured but at what cost is my question-I live alone so I really have no one to care for me on a full time basis-I have a daughter close by but she works full time.

chrissymae39

JanuaryDaybreak said:

Welcome!

Some of us have threads about our experiences, and I'm sure any of us would be glad to talk about specific aspects of vulvar cancer.  If you could repeat your story here, it'll give us a starting point.  Especially, I'm interested to know how you're dealing with vulvar cancer now, and how long it took to diagnose.  Are you still in treatment, or is the cancer in remission?

Hi January,  I went to my

Hi January,  I went to my yearly physical at the end of June 2017.  My doctor noticed something that didn't look right so she referred me to see a gynocologist. The Gynocologist did a biopsy at the end of July 2017 positive for vulva cancer.  I had surgery on Septemner 7th 2017.  I had my two week check-up after surgery (radical vulvectomy with lymp node removal on September 20th) to see how things are healing and discuss results of lymph node biopsies. Things are healing well but results and recommendation of further treatment were unexpected and a little unsettling. Doctor said she got clear margins around tumor, lymph nodes from right side were all clear, she removed 11 lymph nodes from the left side and one was positive for cancer BUT she doesn't feel radiation is going to be needed at this time. This was confusing to me because I thought if cancer was found in nodes then next step is radiation.....but she said because she got a large sample and it was contained within only one node she felt radiation wasn't needed. Anyone else have this experience? What do you all think about this?

 

chrissymae39

frightenedlady74 said:

have had a partial vulvectomy

have had a partial vulvectomy on 9/11/17 which came back with cancer invading the margin-having a pet scan today and seeing a oncology radiologist on oct 5th-then they (the surgeon and the radiologist) will come up with a treatment plan.  I didn't have too bad a time with the surgery but I am pretty scared about radiation on that area-has anyone had this done-how painful is it.  I am 74 and they seem to think at this point this can be cured but at what cost is my question-I live alone so I really have no one to care for me on a full time basis-I have a daughter close by but she works full time.

deciding

Hi Frightenedlady,  My doctor has stated that she is not recommending radiation at this time. I am trying to decide if I am o.k. with that recommendation.  Here is my story:   I went to my yearly physical at the end of June 2017.  My doctor noticed something that didn't look right so she referred me to see a gynocologist. The Gynocologist did a biopsy at the end of July 2017 positive for vulva cancer.  I had surgery on Septemner 7th 2017.  I had my two week check-up after surgery (radical vulvectomy with lymp node removal on September 20th) to see how things are healing and discuss results of lymph node biopsies. Things are healing well but results and recommendation of further treatment were unexpected and a little unsettling. Doctor said she got clear margins around tumor, lymph nodes from right side were all clear, she removed 11 lymph nodes from the left side and one was positive for cancer BUT she doesn't feel radiation is going to be needed at this time. This was confusing to me because I thought if cancer was found in nodes then next step is radiation.....but she said because she got a large sample and it was contained within only one node (of those that were removed my issue is are there others still in there?)  she felt radiation wasn't needed. instead we will watch wait and monitor things closely.

 

Rubyslippers11

Vulva Cancer

i was diagnosed with Vulva cancer and had 31 radiation treatments..I am dealing with radiation burn..wondering if anyone else has this problem..

Laura2051

Rubyslippers11 said:

Vulva Cancer

i was diagnosed with Vulva cancer and had 31 radiation treatments..I am dealing with radiation burn..wondering if anyone else has this problem..

Have had radiation burns and recovered

Rubyslippers, I had vulvar cancer last year and had 32 radiations. I was badly burned, despite using aloe vera. My skin was rotting and peeling off but I healed. October 20th 2016 was my last radiation. Aloe did help some I even drank it in my water (whole leaf). It is remarkable what we can survive! There is life after chemo and radiation but it is different. Occasionally I still sleep with an ice pack between my legs, more due to itching than pain although I was swollen a little this past summer and the ice packs helped. They help with itching too I guess that comes from the skin being different. Can't scratch or area becomes swollen and painful. But, I am alive and still a conqueror of cancer! Just like you are a conqueror of cancer my friend! More than survivors, conquerors!

andwho

https://csn.cancer.org/discussion/comment/1607248#Comment_1607248

I finished radiation & chemo 4 months ago for vulvar cancer. Still having issues with irritation & itchiness. Will I ever be the same or is this the new me? Any advise will help.

Rainny

Vulva Cancer

So glad to find this support group to share with ! I am 57 years old and have Vulvar cancer, diagnosed in February 2023. I have had 35 radiation treatments and 8 rounds of chemo. Thought all was going well after going through all of that, and I was healing fairly well. After having a MRI Scan at the 3 month mark, they found something else, so they sent me for a CT scan and then a PT Scan only to find two more tumors, in the perineum area. Very close to where the first tumor was.The cancer came back very rapidly . So now I am scheduled for Pelvic Exenteration surgery on Jan 15th 2024 and i am very nervous. Has anyone else been through this surgery and could share their experience on the surgery and living life afterwards . Thanks