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Just finished treatment for vulvar cancer

Just finished treatment for vulvar cancer

Posted by Reed on Jun 16, 2018 6:18 pm

the last few months have been a kind of blur as I discovered cancer, had surgery, followed by chemoradiation and now I am in recovery. I can only hope the treatment worked. The months have brought a new perspective on priorities as recovery for me has been slow and I feel weak much of the time. I feel every moment of my 60 years but I try and remain positive for both my husband and son. I didn’t get a stage for my vulvar cancer but know it is squamous cell carcinoma and had spread to the sentinel lymph node. Does anyone know if the stage changes as more information is uncovered?  I guess I’ll find out at my 6 week follow up appointment. Until then I am looking to connect with people who have lived through the experience. I like hearing stories. 

Re: Just finished treatment for vulvar cancer

Posted by LPPK on Jun 16, 2018 7:27 pm

Hello Reed‍ I have just seen a webcast on Staging & Grading:Understanding the Numbers. It is very informative. Look under Webcasts on the top bar, and you will have to sign in. 

Re: Just finished treatment for vulvar cancer

Posted by Catherinelynn on Jun 17, 2018 7:46 am

In 2012 I was diagnosed with stage 3 squamous cell carcinoma vulvar cancer.it had spread to the ovaries and lympnodes in the groin area. I did 43 rounds of radiation and 10 rounds of chemo . I was sick could not eat .I lost 80 pounds .my bottom was blistered and burned from the radiation..when I finished they did a biopsy and said I was cancer free . My pet scan showed it had spread to the cervix .womb and vagina . I had more radiation and then surgery . I'm in remission ..I had a huge tumor that grew from the size of a eraser head to a baseball in 2 months .it would fill with blood . I was told to prepare for the worst . But radiation took immediately. I'm thankful . 

Reed‍ 

Re: Just finished treatment for vulvar cancer

Posted by Elsie13 on Jun 18, 2018 4:28 pm

  Hello Catherinelynn‍ .  Glad you have found cancerconnection.  You've had a lot of treaments! You mentioned the blistering and burning and now I'm wondering if you had other side effects? Not sure, but these other discussions might be of interest: 
https://cancerconnection.ca/discussions/viewcategory/72

https://cancerconnection.ca/discussions/viewcategory/76
https://cancerconnection.ca/discussions/viewcategory/62
 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: Just finished treatment for vulvar cancer

Posted by Catherinelynn on Jun 19, 2018 7:47 am

My bottom was burned . It turned almost black . The blisters inside and out .the radiation machine was set at 360' the max . But I was in stage 3 cancer ans my tumor was the size of a base ball

Re: Just finished treatment for vulvar cancer

Posted by Lacey_adminCCS on Jun 19, 2018 11:13 am

Reed‍ and Catherinelynn‍ 

I wanted to introduce you both to some other ladies who have experienced vulvar cancer Plannergirl66‍, Newbiejulie‍, Elsa‍, alameda‍, antsy‍ 

It would be great if everyone could share some info to get to know eachother:
When were you diagnosed?
What treatment did you have?
How are you doing now?

Lacey

Re: Just finished treatment for vulvar cancer

Posted by antsy on Jun 19, 2018 6:51 pm

I have had a needle biopsy and it showed invasive squamous cell carcinoma.  Then May 1st I had a excision of the area.  I am on the margin for taking groin lymph nodes.  I still have not heard from the Cancer Clinic but my gyny said he was pretty sure that they would just monitor me every six months.  I finally feel like I have healed but not completely. I still wear a night gown whenever I am home; otherwise I wear a skirt or dress. No idea how this all works.  Twelve years ago I had colon cancer and it was a bit more straight forward.  I had a resection them chemo.  I find this more complicated and embarrassing as well. 

Re: Just finished treatment for vulvar cancer

Posted by Catherinelynn on Jul 12, 2018 6:29 am

I would see another doctor .this cancer spreads fast. It's nothing to play with ..with in a matter of 2 months mine spread to the lymph nodes and ovaries and while I was doing radiation it was spreading .I'm thankful to b alive .but was told by 2 oncologist it will come back with vengence .and attack the lungs ,liver, or kudneys that I will never b cancer free it's just sleeping

Re: Just finished treatment for vulvar cancer

Posted by ArtemaiL on Jul 12, 2018 10:21 am

Catherinelynn‍, I feel for you. Mine is aggressive also and is sleeping, too.

Re: Just finished treatment for vulvar cancer

Posted by Jennyk on Dec 13, 2018 10:52 pm

Hello. My name is Jen. I was diagnosed with vulvar cancer in July 2018 at 34 years old. I had a hysterectomy (left ovaries but took everything else) in May and they took a biopsy then of a spot that looked unusual. It turned out to be vulvar cancer. I had a vulvectomy July3rd. I haven't had to do any kind of treatments thankfully. The recovery was rough because part of it couldn't be stitched closed because of size and location. We are just waiting and watching now to make sure it's all gone. I had a mass show up in my lower abdomin last month and had it removed. I ended up being a drain for 2 weeks because I developed an abscess in my abdomin. We found another mass Friday on my lower left pelvic area. Waiting on oncologist to decide over treatment now. So happy to have found this page and seen I'm not the only one with this type of cancer!

Re: Just finished treatment for vulvar cancer

Posted by Redrocket on Oct 2, 2019 7:56 pm

Hi Jenny k

When u were diagnosed did they not do a pet scan to look for other cancers ? It just treat one at a time ? I'm worried because all they did for me was a ct no contrast and the vulvar surgery. I just assumed they would have wanted to check all the female zone out to rule out ovaries cervix etc......
Curious 

Redrocket