Posted by Lorsteel on Mar 27, 2015 3:00 pm
Since this is only a female cancer, I hope to hear from a woman out there who has, or has survived vulvar cancer. How and where it was treated and what the outcome was, as well as any other helpful advice that you may want to convey to me. It would be much appreciated.
Posted by joey on Mar 27, 2015 3:14 pm
Posted by Lorsteel on Mar 27, 2015 3:46 pm
Posted by Heathercook on Nov 19, 2015 8:49 am
Posted by Henpen on Mar 4, 2016 8:17 am
Posted by Barb19 on Jul 16, 2016 8:38 pm
Posted by StuffNonsense on Jul 17, 2016 10:48 am
I know how horrible it is to wait - your mind can seize on the worst case scenario, especially at night (for me). What's been working for me is asking all my friends to phone/ visit to keep me company: I created a private Facebook page where I can let them know what is going on, and made a calendar so that the visits were spread out and I could rest. I find being with people who care about me makes the biggest difference. I also see a counsellor regularly, and connected with a sex educator to talk through my fears about vulval surgery. I was connected to a vulvar cancer survivor by the Canadian Cancer Society, and we talk on the phone regularly. She's been an absolute godsend!
How are you feeling after local excision? I'd be very happy to talk more if you'd find it helpful. Wishing you speedy healing and a good appointment with your oncologist :-)
Posted by Barb19 on Jul 17, 2016 6:14 pm
But, until I meet with the GO, I haven't shared this beyond my husband and a couple of really good friends. I haven't shared this with our adult children, as all I have to tell them right now is "I have cancer" without any context of seriousness. That will come soon, I expect.
How is your surgical site healing and is there other treatments they are pursuing? And when did you tell your friends and family?
Posted by StuffNonsense on Jul 18, 2016 2:45 pm
I had a radical (deep and wide) excision 6 weeks ago, had a post-op infection for several weeks, but that has cleared up now, and I feel like myself again. Still not sitting directly on the incision, but it is almost completely healed and I'm in no pain. In my case, they removed my sentinel lymph nodes and found a microscopic tumour, so I will be having a PET scan and further treatment - I see the oncologist tomorrow to discuss the provincial team's recommendations.
What I found helpful about talking to a fellow survivor was the practical tips - she told me to buy a comfortable long dress to wear after surgery so I wouldn't have to worry about underwear - stuff that the doctors don't always think to mention.
It's great to hear that you're almost healed at 4 weeks, and if you'd like to chat some more (either before or after the oncologist visit), I'm happy to connect - this really is a rare cancer, and (for me) talking to others reduces the unknown.
Posted by Pokie on Nov 30, 2016 11:24 am
I have been diagnosed with vaginal cancer, which is also rare. I have not been able to find anyone who has this diagnosis to speak to. Or find much information on it, which makes me feel like I am swimming in the ocean with no land in sight. I will be seeing a plastic surgeon to discuss vaginal reconstruction, which is another unnerving procedure to consider. Surgery will be on Dec 19th. Unfortunately right now I have heard the peer support is being revamped. I had a great peer support person when my anal cancer was diagnosed, she was a blessing.
wishing you all the best in your recoveries.
Posted by StuffNonsense on Dec 1, 2016 12:28 pm
I don't know whether you've checked the following websites, but am passing them along. I'm in a support group for women who have completed treatment for gynecologic cancer, and was given this info at the group:
You might be looking for more of the personal "been there - this is how it was for me" info that you'd get from peer support. I do hope that you can connect with someone on this site who has the same diagnosis as you. In the meantime, I'm happy to keep talking if you'd like a listening ear - my experience is different, but there might be some helpful overlap.
All the best to you too
Posted by gracemd on Dec 1, 2016 1:01 pm
It's too bad that these feminine cancers has to affect us women at one time or the other, but take courage, since we all need that to handle challenging situations in life.
Cancer of the vagina is a squamous cell cancer that could be either squamous cell carcinoma or adenocarcinoma.
Both are curable depending on the stage at which one was diagnosed.
Another good thing is they may not be very aggressive like some breast cancers.
Survival rates depends on type of cancer, general health of person affected and response to treatment.
Keep your chin up, boost your immunity with nutritious food and excercises and you will do well.
Like StuffNonsense wrote, you can get more information from cancer.org and also from your oncologists who is the specialist in this field. All the best.
Posted by Pokie on Dec 2, 2016 10:17 am
Will be having surgery on the 19th of Dec.
Onward and upward,..
I have felt comfortable sharing the diagnosis (after I have the plan in place) with others mainly to remind them NOT to ignore their bodies when things are not quite right. Feel it is important for me personally to reach out in that way.
Posted by Newbiejulie on Feb 3, 2018 7:57 pm
Posted by Elsie13 on Feb 4, 2018 5:08 pm
Posted by Plannergirl66 on Apr 27, 2018 6:23 pm
Posted by Elsa on Apr 28, 2018 12:06 pm
Posted by Elsie13 on Apr 28, 2018 3:22 pm
Posted by alameda on Apr 29, 2018 9:58 am
Hi: I am new to this site. Just found it last night. I have had VINIII over the past 20 years. Have had a small surgery but multiple laser treatments. My gyn said the next time she would prefer to perform surgery rather than laser. It seems that all of a sudden, I have a thickened wart like left labia and a sore on my right labia. I also have what looks like genital warts. I have my appt. on Thursday, May 3 where she will certainly take a biopsy. I just wanted to check base to see if there are still other women using this site. I have constant headaches now which I assume are from stress. At any rate, I'll email more about my appt. May 3rd
Posted by Elsie13 on Apr 29, 2018 7:04 pm
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Posted by Elsie13 on May 10, 2018 3:48 pm
Posted by Lacey_adminCCS on May 10, 2018 3:56 pm
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