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Phoebesnow
Posts: 453
Joined: Apr 2011

Hi,

I am from the anal cancer boards, stage II. Completed tx 12/8/10. It took me 9 months to recover from tx. I was doing ok for 5 months and then struck down in dec by Ataxia. Thru much research on my own I found it was a chemical induced ataxia due to minocycline I was taking for several years. I am making a slow recovery from that and maybe left with some permanent brain damage. I should know in about one year. I think this slowed my recovery substantially.

I have been taking small amounts of estrogen progesterone for about 10 years. I was diagnosed with cervical dysplasia at 24 grade 5. I never told my doctors for fear of being unable to obtain insurance. I have also had several skin cancers, starting in my 20's . One was invasive, do not remember the name. There is a connection to hpv with anal and cervical cancer. Although I have never tested positive, I think it is the culprit.

I am now 51. I have had fibroids show on pet scans, had vaginal ultrasound, everything seemed to be ok. This was my 3rd pet scan and now there is some uptake in the uterous, it lit up! The other times there was no light up. My rad/onc has always been concerned about this fibroid. I have an appointment scheduled with gyn next week, but had contacted her via e mail and she consulted with the gyn/onc and they do not want to schedule any additional tests and take the wait and see approach for a while.

The reason I'm giving you all this info is my symptoms from one disease could be overlapping.

Bt the way I have kaiser,

Symptoms are

Insomnia
Night sweats (soaking wet)
10 lb weight loss
Lower back pain
A pain that occasionally goes thru the middle lower part of my body that feels like a long knife is being stuck up into my genitals into my stomache. Rare
Leg cramps
White discharge on underwear (could be from radiation)

I have no bleeding.

It has one year between pet scans.

It was a different pet scan machine from the other two times.

I value all of your opinions.

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Hi Phoebe

Sorry to hear of all the difficulties you have been experiencing and you do have a rather complex history. PET scans only display increased uptake areas without any structural reference so low level CT scans are run with them to provide a structural overlay to orient where the uptake is, so perhaps the previous display of fibroids was on the CT since without uptake they would not show up on PET. The low level CT is not considered a diagnostic CT. When I have PET/CTs both the low level CT and diagnostic CTs with contrast media are done. I would be a little concerned that they are not pursuing any further tests with the increased uptake now showing on the PET, which is a change from prior scans. Do you have options for second opinions or a least discuss the timing of this 'watch and wait' approach?
Annie

Phoebesnow
Posts: 453
Joined: Apr 2011

Thanks for the info. I will be seeing my gyn next Friday. I certainly believe in second opinions at an outside provider. Is there any other tests that will show cancer in the uterous? If I know of tests that I want and it pertains to the situation, they will give it. The big thing is you have to have the knowledge in order to ask for the right tests.

Really trolling for any info/guidance before I meet with her. The anal cancer board provided me with a wealth of info before and after tx. Any comments are appreciated,

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I think the next logical step would be to biopsy the area that lit up and go from there. That's what my doc does.

Best wishes.

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

I second daisy's recommendation to request a biopsy of the fibroid particularly since your rad/onc has also been concerned about the fibroid.
Annie

Phoebesnow
Posts: 453
Joined: Apr 2011

Thank you. It was my feeling too, that something needs to be done now. Is this something that can be done at the time of the appointment?

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

I specifically called to schedule a biopsy with a gynecologist following an abnormal pap at annual check up. Some posters have noted their doctor opted to do it when they were in for consult. It may depend on how things are handled at your doctor's office. Also, some posters have commented that taking a mild pain reliever such as ibuprofen before appt was recommended as biopsy can be uncomfortable --it's been 4.5 years since mine and I can't recall how it went exactly.

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

I had uterine cancer, and I was finally diagnosed because I requested vaginal/abdominal ultrasound. They found a tumor. Then, I had a biopsy that confirmed it was cancer.
So, I also agree your next step should be a biopsy.

When I had the biopsy, first the onco tried to do it during a regular visit, just the same way the do a pap. It did not work.
The doctor then gave me an appointment and sent me home with some pills to take before the biopsy to dilate the vagina.
The only side effect from the pills was abdominal pain, but not severe.

Please keep us posted.

nempark
Posts: 596
Joined: Apr 2010

Definitely a biopsy. My doc kept telling me all the time that the fibroids were the culprit that was causing problems. Yep. MMMT cancer was the culprit after a biopsy.
Don't delay. All the best.

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