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Life altering effects of surviving vulvar cancer

ToniD
Posts: 3
Joined: Nov 2010

Hi,

I'm Toni and in Feb 2008, I was Dx'd with stage IV vulvar cancer with bilateral lymph node involvement. 10 days later, I had a radical vulvectomy and sentinal node resection. I had 7 hot nodes. Once that healed up, I had 6 weeks of radiation with prophylactic chemo.

I suppose what has brought me here is that I'm now having some real issues with self esteem and the fear of spending my life alone because I don't want to be some freak show for someone. Trust is absolutely imperative and I just don't know how I can find myself trusting enough to be with someone again.

How do you explain to a potential new relationship "Oh btw, I resemble a baby doll down there.... you know... flat then a hole. And don't pay any mind to the zipper scar that's right there where my *button* is supposed to be".

Is there anyone around here that's been through this? The man that I thought I could trust, isn't going to be there anymore and he swears that it's not an issue but I just can't see another man being able to deal with the issues that come with it.

Thanks
Toni

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Toni,

I've not had this cancer, mine is uterine. Have a good friend who had your same cancer, as diagnosed in 2005 and had the surgery...not sure if all the specifics are same for her. Apparently she had a "quack" doc who mutilated her in the area of surgery. She has been married 30+ years and to this day, her husband cannot stand to have intercourse or see her naked. Crazy! After 5 years of this she is used to it and learned to not partake of intercourse...can't imagine.

If she didn't have a bad doc and wasn't so mutilated (just hate to say it this way, but the truth), her sex life would be normal. Have heard of others in your situation and are today enjoying a normal life.

Don't give up, as we all aren't so visual to think this is only way of love.

Good luck,
Jan

ToniD
Posts: 3
Joined: Nov 2010

Hi Jan,

Thank you for your reply. I can not imagine being in your friend's shoes.

Thanks
Toni

funbeadgirl
Posts: 164
Joined: Jan 2009

Dear Toni,
I am so sorry for your diagnosis and what you have had to endure so far. I was dx with vulvar adenocarcinoma and had surgery Jan 09 followed by 5 1/2 weeks of radiation...so I really do know where you are coming from.You don't say how old you are, but I am guessing you are younger than I am, I am 57 and been married for 37 years. It has been a challenge for me to get back to an intimate relationship, not impossible, but non the less a real challenge. I saw a womens health specialist ( a doctor) that helps women who have gone through cancer treatment and she was able to help me with the sexual issues I had.
Perhaps your oncologist can recommend someone to you. The mistake I made (and still make) is that I expect everything to go back the way it was before...well, that will never happen, that is why I titled this a 'new' normal. I am different physically and somewhat emotionally, but I am still a strong woman that has a lot to offer, fortunately I have a super supportive husband, and we both are just grateful that I made it through cancer and do not put sexuality as our #1 priority. Each person is different in how they will handle a situation, no right or wrong, just different. I truly hope you can find someone down the road that will accept you for who you are as a person...any one that is 'put off' by what you have been through would not be worth it and you deserve better. Believe in yourself, you have much to offer, and be strong! My best to you.

ToniD
Posts: 3
Joined: Nov 2010

Yes I am younger. Vulvar cancer is rare to begin with and ever rarer at my age. I was 38 when I was Dx'd and I'm now 40. Mine was advanced enough that my gyne oncologist really believed that he wouldn't be able to save my life and when he walked out of surgery he said I had a slim chance. I'm 2.5 yrs out now and I'm due for a PET scan but so far have always been clear.

When this happened, I had been out of a 15yr marriage for a couple years. I had a very close friend who wanted to be in a relationship with me but because my life was in the balance, I kept him at bay. He waited for me and knew what he was getting himself into. He says that the difference never bothered him. We've now split up and I'm left with trying to figure out how in the world I'm going to have a normal life again.

You're right. Things will never be the way they were before. But, with the man I was with, he was more than willing to watch and see what worked and what didn't. We already had trust involved and I was able to discuss this and that with him.

Men are men... I'm not sure how to build a trust with someone to even allow things to get to that point.

You do have a very valid point in that I deserve better. I beat a cancer that I was told I couldn't. My surgeon, at that point, had no survivors at my staging. I was the survivor speaker during treatment for our local Relay for Life event. I know I'm strong... but man alive how much do I have to survive lol

Thanks for your encouragement!!!
Toni

mh1229
Posts: 22
Joined: May 2010

I am a bit younger, 31. I was diagnosed with vulvar melanoma in January. The surgery is the same. I had a simple vulvectomy. I got to keep my clitoris but am basically to the bone on my right side with a massive scar across my perineum. Grosses me out to even talk about it. So, obviously I am not okay with the changes. I know how lucky I am when it comes to the extent of my surgery but most of the time luck isn't a word I would use.

I am married and he is very loving and understanding. I have an extremely difficult time letting things happen. I am in counseling now, which helps when I will let it. That is the only thing I could recommend. Find a good therapist and try and learn to be okay and confident in what we are left with. I think a good man will come along naturally after that.

Take Care!
Melanie

Ruby3
Posts: 30
Joined: Dec 2010

Hi Toni, I hope that you will update your post some time. I was in a similar situation to you. I had started a new relationship when my cancer was discovered. Luckily it was very new. He immediately started seeing someone else and I picked up on it and put an end to it. I have no intention of getting involved again. I just have to be strong on my own. That's why we have each other - all of us who have battled cancer. We'll get through it together.

shk
Posts: 2
Joined: Apr 2011

Hi Toni,
life is given by God and people respect love which is above all.I wish you good health. Are you still living with lymph nodes or ?. Why I am asking you that because my wife is suffering
with peritoneal cancer which has been re-curance of endometric cancer. the re-currance was found three months ofter extensive radiation.

Thanks
shk

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Hi Tony,

I have never had vulvar cancer but the thought of it resonates inside me for a very different reason.

I was sexually abused when I was a child. Since then, I have never felt safe at being in a sexual relationship. I imagine that someone who has had surgery which reduces their sexual self-confidence to a great extent would not feel very differently to what I have felt all my life - ashamed, embarrassed, but above all frightened. For me it has been more like terror. Because of it, I forwent every opportunity to be in a sexual relationship.

When I have examined what might have enabled me to actually overcome my fear, certain things come to mind. I wonder if those same things would be of help to you.

1. Meet a man with whom you bond at the level of friendship and shared values.
2. Say very early on that a sexual relationship is something that causes me to feel frightened and something I need to look at very closely, and to feel safe before we go there.
(If at this point, he leaves, then better that he does)
3. Probably with the help of a sensitive and informed sexual therapist, be sensitive in learning how each other's sensuality is awakened, startiing in the most casual kinds of contexts, in which NO expectation of proceeding further is expected.
4. Start to be intimate by gradually involving touch that is entirely safe, but sensual. He may need to finish his own need separately.
5. Gradually increase the sensuality of the touch - an easy thing to do when all it takes it intention for that. It need not involve the genitals, and it need not even involve undressing.
6. It is at this point that I could imagine that some degree of undress might commene. Still keep in mind what the therapist would say to help you move forward.
7. What I haven't said till now is that, very early in this process, he should be told *why* you need to move so slowly. If he doesn't have the sensitivity or the bonding or the *communication* with you to allow that, then again better off that he go.
8. It is *you*, not him, that must determine the level of safety that you feel as you progress very slowly to trust him.

I believe that *not* all men are incapable of communicating at a level that does bond them strongly with a woman whom they love. But it is a process that starts with finding someone who, when you first meet them, you think "Mmm.. Feel safe with him". It may not turn our that way. And you can expect that often it won't, but if ever it is to be true, it must start out that way.

The reason that I find such a process so easy to picture is because safety is also my first need in a sexual relationship. As it happens, I sabotaged every opportunity to develop such a relationship, placing fear ahead of trying to establish that level of communication. You are young. Don't do the same as me or you will be sure to stay alone.

Such prosesses that gain trust and safety *do* exist, and they are helped by wonderful, sensitive and intelligent therapists who, I'm sure, are familiar with a wide range of reasons why people avoid intimacy and sexual relationships.

One other thought does come to me. If the clitoris is removed along with other parts of the genitals, that doesn't mean that you cannot find stimulation in other ways. Again, seek a qualified therapist, and *don't* give up on living a full life. You don't have to.

AussieMaddie

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