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.

Looking for some advice.
I was diagnosed with vulvar cancer 2 yrs ago. 32 rounds of radiation (no surgery) 3 rounds of chemo. As of now no sign of cancer. Still dealing with irritation in that area that comes & first. Any cream suggestions? Also suffering with loss of bladder & bowel control.
Otherwise glad to be alive!
Any feedback would help!

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No. It does not bang like an MRI! I have now had four at Mayo in Rochester! You stay in your clothes and you can have whatever type of music playing for you. You are in and out of a tube for about twenty minutes. The only bad part is that they will put you in a dark room for an hour before and infuse you with the radiation dye that will go through your system and identify any cancer. It is the latest and greatest at identifying any cancer anywhere in the body.

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@scm

The pet scan will show if you have cancer anywhere. It is easy! Do not worry! Best way to find any cancer!

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Is it with X-rays? Or sound like an MRI?

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I wish you all the luck in the world, my grandmother had squamous cell in her ears neck and throat and that was devastating to watch, do you know what stage you're in yet? I pray that you have a good oncologist. Stay positive and strong willed miracles happen every day

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@nomikins

Could you give a little more details about the Pet MRI? Neither of us have heard of this. Wondering if this is an acceptable way to track improvement after Aldara treatment.
Thanks!

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The pet scan will show if you have cancer anywhere. It is easy! Do not worry! Best way to find any cancer!

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I was diagnosed with vulvar melanoma and had a radical vulvectomy in January of this year. I go back to Mayo every 90 days to have a pet scan and physical exam. The surgeon believes that she got it all since she got clear margins and no lymph nodes had been impacted. Every day is a blessing! If it returns, I will have a combo immunotherapy. I had Dr. Bakkum in Rochester and she has been great throughout this journey. I did get Mersa from the drains and went back to Rochester for five days. I would be happy to answer any questions as this is a rare and frightening cancer.

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@bobette1

I had radiation, chemo and surgery for my vulvar cancer. I didn't develop those symptoms however I still have issues. My chemo/radiation ended March 2023. I was still having lots of discomfort. I do find it I take miralax every couple of days that does help. Also if you are offered pelvic physical therapy please do it. I know it is weird but I was having bladder leakage and once I learned how to strengthen my pelvic floor that helped. Please keep us posted on your journey.

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Thank you for responding.
One thing for sure is the skin on the vulvar has never been the same. It is very sensitive & delicate. I just think I have to accept the changes in my body. Please share anything. Thanks for listening.

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@andwho

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

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I had radiation, chemo and surgery for my vulvar cancer. I didn't develop those symptoms however I still have issues. My chemo/radiation ended March 2023. I was still having lots of discomfort. I do find it I take miralax every couple of days that does help. Also if you are offered pelvic physical therapy please do it. I know it is weird but I was having bladder leakage and once I learned how to strengthen my pelvic floor that helped. Please keep us posted on your journey.

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@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.

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I haven't had any side effects from radiation ::knock on wood:: I am sorry
she is experiencing issues.

From
misstrouble

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@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.

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I did, in fact, have vulva cancer. However, I never had any radiation or
treatments of any kind. My doctor was able to remove it all. This was over
five years ago and I have had no problems since then.

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