Squamous Cell Vulvar Cancer: Who out there has this cancer?

Posted by bobette1 @bobette1, Oct 10, 2022

Just diagnosed a week ago. Who is out there with this cancer? Looking for advise, tips and what to expect as I start my journey. TIA

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

@colleenyoung

I'm tagging fellow members like @bobette1 @ljchicago @sillywabbit @jeanadair123 @annie7837 @angie0374 @crissyd @westnp1 @stolisnc30 @cjp930 @misstrouble @catlove30 who had treatment for vulvar cancer including radiation to share their late side effects with you @andwho.

Andwho, I understand that you've developed hemorrhoids, possibly polyps and proctitis a year after radiation. You might also be interested in this related discussion:
- Anyone been diagnosed with Radiation Proctitis?
https://connect.mayoclinic.org/discussion/radiation-proctitis/
Have you talked to your doctor about these late side effects and possible treatment? There are treatment options.

Jump to this post

I have not had any of these symptoms. Everything else but not this.

REPLY
@andwho

I possibly developed - hemorrhoids or polyps after completing vulvar cancer radiation 1 year later after radiation. Does anyone else have the same issue?
Multiple late side affects!
Please share your experiences!

Jump to this post

I'm tagging fellow members like @bobette1 @ljchicago @sillywabbit @jeanadair123 @annie7837 @angie0374 @crissyd @westnp1 @stolisnc30 @cjp930 @misstrouble @catlove30 who had treatment for vulvar cancer including radiation to share their late side effects with you @andwho.

Andwho, I understand that you've developed hemorrhoids, possibly polyps and proctitis a year after radiation. You might also be interested in this related discussion:
- Anyone been diagnosed with Radiation Proctitis?
https://connect.mayoclinic.org/discussion/radiation-proctitis/
Have you talked to your doctor about these late side effects and possible treatment? There are treatment options.

REPLY

Can anyone that has had vulvar cancer (no surgery) only radiation & chemo share any late side effects please!!!

REPLY
@andwho

I meant “proctitis”!!!!!!!

Jump to this post

I possibly developed - hemorrhoids or polyps after completing vulvar cancer radiation 1 year later after radiation. Does anyone else have the same issue?
Multiple late side affects!
Please share your experiences!

REPLY

I meant “proctitis”!!!!!!!

REPLY

I am a vulvar cancer survivor for 1 year but always in fear. My question is does anyone suffer with late pelvic side effects? I was fine until I recently developed an external hemorrhoid or protitis. Had anyone else experienced this?
Thanks

REPLY

What treatment will you be receiving?

REPLY
@naturegirl5

@andwho Oh, good. I'm happy I responded with what I learned and it was helpful for you. I figured out the following for myself. If the thoughts pop up once in a while and stay mostly in the back of mind then that's good. When the thought is front and center and I can barely concentrate on anything else then that's when those thoughts affect my quality of life and in living each day as it comes. I learned that prior to a cancer surveillance appointment it's OK if my anxiety ramps up particularly if I'm going to have scan. That's normal. Once I find out that nothing is there - no evidence of disease - can I breathe a sigh of relief? Yes.

As my mind wanders to the worst possibility I gently escort it back to the present moment. If I have to do this over and over again then so be it. I keep doing it. This is what I do just before those cancer surveillance appointments.

Jump to this post

Your words are so encouraging!! Thank you, I will keep your advise close to heart! Hope all is well with you & stay strong 🙏

REPLY
@andwho

Yes! That is exactly what I mean. So glad you shared this. This is the new “normal “ for me. You live in fear of every twinge you feel. Right now I am having a dull ache either in my hip or sciatic not sure where!
But my pet mri showed nothing. But my mind wanders! Not a healthy way to live! Thank you for sharing & I am thankful to be able to share my feelings on this site🙏

Jump to this post

@andwho Oh, good. I'm happy I responded with what I learned and it was helpful for you. I figured out the following for myself. If the thoughts pop up once in a while and stay mostly in the back of mind then that's good. When the thought is front and center and I can barely concentrate on anything else then that's when those thoughts affect my quality of life and in living each day as it comes. I learned that prior to a cancer surveillance appointment it's OK if my anxiety ramps up particularly if I'm going to have scan. That's normal. Once I find out that nothing is there - no evidence of disease - can I breathe a sigh of relief? Yes.

As my mind wanders to the worst possibility I gently escort it back to the present moment. If I have to do this over and over again then so be it. I keep doing it. This is what I do just before those cancer surveillance appointments.

REPLY
@naturegirl5

@andwho When I was at Mayo Clinic getting radiation therapy I attended an education session at the Mayo Clinic Cancer Education Center. I learned that once you've been diagnosed with cancer and treated and even when there is no evidence of disease it is normal to have these little twinges that you might conclude - oh, is that cancer? We were shown a film at the Cancer Education Center that was an interview with cancer survivors. One of the cancer survivors said even when he feels a little pain in his toe his mind leaps to - "is this cancer? Is there cancer of the toe?" The information I learned has really stuck with me. The education session helped me to understand that my worries, when they come up, are normal. I don't dwell on the worry. I am able to let it go. My anxiety does ramp up before a cancer surveillance appointment and I've learned that this is normal too.

Is this what you mean about experiencing things you never felt before cancer?

Jump to this post

Yes! That is exactly what I mean. So glad you shared this. This is the new “normal “ for me. You live in fear of every twinge you feel. Right now I am having a dull ache either in my hip or sciatic not sure where!
But my pet mri showed nothing. But my mind wanders! Not a healthy way to live! Thank you for sharing & I am thankful to be able to share my feelings on this site🙏

REPLY
Please sign in or register to post a reply.