Vaginal Cancer

I'm a stage 4A vaginal cancer survivor, I usually hang out on the gyno board. I can certainly understand your anxiety attacks, cancer is a hard thing to process. I know you're scared and you have every right to be, but just know that this too shall pass. I was dx almost 3 yrs ago, went through chemo & radiation, then I had a posterior pelvic exenteration. And I had 3 drain tubes after my surgery, They aren't that bad. After you see your oncologist you should know what stage you are. Please take time to just breathe and as my husband told me when I was dx, take it 1 day at a time and keep your sense of humor. You kinda have to have a sense of humor with vaginal cancer!! I still see my 3 surgeons & oncology radiologist, and each time I have to drop my drawers for an exam down there!! Thank goodness my oncologist doesn't have to do it too!!! Please keep me posted on how you're doing. It's hard to find alot of vaginal cancer survivors out there, since it is so rare. I'm here if you have any other questions or just need to vent!!!

Babe

mrsspence1963 said:

Hi Babe12

Thanks so much for replying.  It really meant a lot.  Pet scan shows that node activity, but all other areas are clear...thank you god....Now I am just trying to stay in a good state of mind for Tuesday.  They are keeping me in the hospital for a few days.  Someone told me those drains are horrible and the set up for the internal radiation is too.  Honestly, I would rather have them NOT tell me stuff like that...That makes my hamster run like crazy on his wheel...this will be my 12th or 13th surgery over the last 12 years so the surgery itself doesn't scare me but the unknown stuff is what gets me worked up and scared.  Boy, I will be glad to just get this over with....I'm having some god awful lower back pain across the pelvis...did you ever have that?  Do you mind if I ask how old you are?  I am 51.  Are things still okay/back to normal for intimacy once I am all healed?

Good to hear back from you! I'm glad the other areas were clear on your pet scan, that's a good thing to focus on. I had 3 drains after my surgery, 2 were removed when I left the hospital 12 days later, the other one I kept for another couple of weeks. It really wasn't that bad. I had the external radiation so I can't give you any insight on the internal. Yes, I did have the back & front pain, I was so bloated. Sitting was uncomfortable too. I am 55, was 52 when dx. Things are different for me, since I had such a radical surgery, they used my rt. adbominal muscle to replace the back vaginal wall they removed. Message me & I'll fill you in a little more.

Babe

Kelley_strong said:

Vaginal Cancer - Stage 4

Hello, 

My mother was diagnosed with vaginal cancer last year on September 20, 2019, 1 day after her 64th birthday.  After lots of radiation, mild chemo, and abrassive internal radiation, she got a clear PET scan in Spring of 2020.  During this entire time, we lost my father unexpectedly.  It's taken a tole on my mother but I think his medical issues and living our lives back and forth between hospital, home, and treatments, allowed her to fight strong.  However, she began feeling stomach pains in July and went to a GI doctor.  They did a CT Scan, found a mass-which brought us to the Radiologist again, and they did another PET Scan.  It seems that now the vaginal cancer has returned and has spread to her lungs.  That quickly, in a short amount of time. 

We got the diagnosis on Tuesday that it is Stage 4.  We're all in a bit of a shock and honestly, freaking out.  She has not yet begun chemo treatments, but I'm looking for anyone to speak to that is living with or has a family member living with Stage 4 cancer.  We just need to gain some insight and I figured what better place to look than here.  

I hope to hear from someone. 

Thank you, 

Kelley_strong

Hi there!

terribly sorry to hear about your mother. There isn't a lot of literature or even survivor stories on vaginal cancer as it so rare. i Am wondering how your mom is fairing with her treatments at this point. I was recmentally diagnosed with a vaginal mass, upon biopsy, results were squamous cell carcinoma. So, I'm awaiting a scan for staging. 

I was diagnosed with Stage 4 vaginal cancer (adenocarcinoma) Dec 2020. I had 4 months of chemo and then 9 weeks of radiation, external and internal. I will be starting immunotherapy in 2 weeks. I would just like to hear from other survivors of vaginal cancer and their experiences post treatment. I have to wait 3 months for a pet scan till the radiaton is out of my system. Any positive encouragement and outcomes would be appreciated. It is so hard to find someone to talk with about this as it is so rare. Thanks!!

Ms.PdandE said:

Vaginal Cancer
Hello
I had stage 3 Vaginal Cancer
I had Chemo on Wednesday for 2 months and Radiation daily for 2 months.

But I drank the recommended water and showed up for treatment and I am still here.
It is good you forget the bad stuff after time, I did this alone, okay. I
I hated the IV and weekly Labs. I finally go fatigued. Shew, chair, and TV.
I finally suffered from vaginal burns, yeah, radiation. Terrible.
Ladies, we are Women, we will come out on the other side stronger.
I had a hysterectomy many years earlier and was told I no longer needed a PAP Smear, we MUST fight harder than everyone to make sure we are healthy on all medical subjects.
Tell the women in your life regular Paps are necessary, and in my case, don't get brushed off by a lazy doctor saying vaginal symptoms are "OLD AGE."

I hope to be strong enough to encourage the woman around me - in family and in life. To not avoid the pains or  troubles they are having and to be checked. Be open to those we trust and share so we don't prolong symptoms or pain--& feel encouragement for seeking health care--no shame. 

Kelley_strong said:

Vaginal Cancer - Stage 4

Hello, 

My mother was diagnosed with vaginal cancer last year on September 20, 2019, 1 day after her 64th birthday.  After lots of radiation, mild chemo, and abrassive internal radiation, she got a clear PET scan in Spring of 2020.  During this entire time, we lost my father unexpectedly.  It's taken a tole on my mother but I think his medical issues and living our lives back and forth between hospital, home, and treatments, allowed her to fight strong.  However, she began feeling stomach pains in July and went to a GI doctor.  They did a CT Scan, found a mass-which brought us to the Radiologist again, and they did another PET Scan.  It seems that now the vaginal cancer has returned and has spread to her lungs.  That quickly, in a short amount of time. 

We got the diagnosis on Tuesday that it is Stage 4.  We're all in a bit of a shock and honestly, freaking out.  She has not yet begun chemo treatments, but I'm looking for anyone to speak to that is living with or has a family member living with Stage 4 cancer.  We just need to gain some insight and I figured what better place to look than here.  

I hope to hear from someone. 

Thank you, 

Kelley_strong

I appreciate you sharing--its a perspective that it is continuous in taking its toll on our bodies-I went to Seattle cancer care alliance in Seattle Washington. To help ease my mind in the hospital in recovery and in treatments I used  good smelling essential oils and I began drawing --- i tried to keep up  singing and listening to soothing or music that was fitting for whatever I was going through -. The help I can be is self discovery throughout the tough times in art and healing expression. My heart goes out to your mother. I know I need the reality check to keep up with my follow up appointments--I am only finally asking for counseling and psychological help... im sorry I can't help more --I'm still young at twenty nine.