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lociee's picture
lociee
Posts: 103
Joined: Apr 2009

Hi "thank you" - I saw in a post that your mother's virginal cuff lit up on a PET scan. The same thing has happened to me. My doctor has said that it's too early to know if it's anything significant. I thought that lighting up was a sign of cancer? What did your mom's doctor say about it??
Thanks, Mia

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My gyn-onc made a comment, that, should my vaginal cuff light up on the PET-scan I have scheduled for Monday, he will more likely attribute that to inflammation from my brachy than to a recurrance at that spot,... and it's been 5 months since my last vaginal brachy.

(just chiming in here, since I thought this might be reassuring.)

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

Hi Linda, I didn't have brachytherapy. Instead 25 external and 7 targeted blasts to a tumor along my colon. I was told that radiation would shrink the tumor. The tumor is the same size, but appears inactive. The last radiation was the end of May. I had a lot of pain during the radiation that they said was my tumor - now I have the same pain, but worse, and they say it's radiation damage. I'm confused! Anyway, the vaginal cuff (I didn't even know what that was until a week ago) lit up in a recent PET CT. It could be inflammation, as everything seems very inflamed. Ouch!

Thanks for your feedback. Do you have pain in the genital area? I remember when you went through radiation, as we were on a similar schedule, and did not have pain. Have you had any pain since?

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I have been lucky enough not to have any real pain during my treatment or since. The only pain in my cancer journey thus far was after my surgery when I thought that this is what hell must be like. (I am allergic to most pain killers and get projectile vomiting so I couldn't take anything.)

thank you
Posts: 77
Joined: Jun 2009

Hi!
Lighting up in PET scan can be either inflammation or cancer. They measure how much it lights up (the units are called SUV, and depending on the number they can predict - nothing is better than biopsy - whether this is inflammation or cancer). My mom had initially a finding in MRI, then we had the option of waiting and repeating 2-3 months later, or do a PET scan and then surgery. We opted for the second. The surgeon said this was an obvious inflammation, he did not even take biopsy of the area. This happened on June 2009. Follow up physical exam has been normal, and PAP smear still shows some inflammation. I also know that IF there is recurrence in vaginal caff, without previous radiation treatment, the prognosis is excellent, with surgery and local radiation - it is worse if you have recurrence after brachytherapy.
Hope this information helps - keep in mind I am not an oncologist, everything I am saying is based on my own research. Best, Chrysoula

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

Hi - thanks for your response - it was helpful. I have one more question. Did she have pain - any overall genital pain before finding out about the inflammation? In other words, did she feel something was inflamed and had a PET to find out?
Mia

thank you
Posts: 77
Joined: Jun 2009

I don't remember her complaining of genital pain, she might had but probably did not feel comfortable to tell me. But - as a physician I know that inflammation or post radiation damage can cause a lot of pain. Usually cancer does not cause pain unless the tumor is really large and is causing pressure to internal organs. The PET scan was done to find out if the lesion that was found in a regular MRI was active or not. We were scared, even her oncologist thought that her cancer was back, that's why she had a second surgery. I would suggest, if you are overwhelmed to discuss with your doctor your options, either to wait and repeat the imaging, or having a second look surgery - which many doctors would avoid if there is no significant suspision. Chrysoula

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

Thanks. I think I'll just wait - keep popping percocet - and see what happens.

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