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November 5, 2012 at 1:11 am #20748
I have been keeping some news to myself these past 10 days. A week ago Friday I left Canada in the middle of the night to arrive for scheduled CTs & MRIs of my body. It has been 17 months since I was diagnosed with nodular mel, breslow 3.9, mitosis 15, completely ulcerated, clark’s IV. Very aggressively growing…
In Canada you don’t get any scan unless you palpate a macro met… a little late… so I decided to pay $2K and do the scans in the USA.
The clinic was very thorough. Part way home, they called me to turn around. They found a tumor in my pelvis. I went back the next morning for an ultrasound. It confirmed there is a 4.3 x 4.7 x 4 mm mass in my pelvis. They are perplexed if it is malignant melanoma or not. The scans also revealed a brain angioma (unrelated) & a tumor in my distal femur (unrelated to melanoma, although one worries about mis-diagnosis).
My Onc. in Canada won’t go with the US scans so I had more scans done in Canada 4 days later. Same story. I was blessed as the Head of Radiology sat in on my scans and asked to meet with me later to discuss what he thought.
In Canada they probably won’t do a PET scan. He suggested it for my stage and characteristics of my melanoma.
My question, is… where can I go in Buffalo NY for a PET? How much is it? Who is reputable? Do I need an Rx from my Onc. My Onc. is head of the Onc. Dept. He will defend the Canadian system to his (or my??) death. I doubt he will give me an Rx for a PET scan.
The head Radiologist said that PETs are good at pinpointing micromets. I am willing to live with a few false positives. I am told I am high risk for mets. I need to feel like I am doing something, going forward. I don’t think the MRI’s/CT’s are going to pick up what the PET scans can. In this case, the CT picked up a large tumor. If this turns out to be a metastisis, scans were a little late! If it turns out to be benign, I want to catch any MICRO met that may arise.
Any one have Buffalo PET scan info? Where I went they only do MRIs and CTs and Ultrasounds.November 5, 2012 at 1:48 am #57385AnonymousGuest
So sorry for the disturbing, un-nerving and mixed results. Hang in there.
Concerning the pelvic mass, a 4.3 x 4.7 x4 mm mass is actually very, very small and below what a PET scan will reliably detect. PET (usually combined with a CT scan) measures the biological activity of tissue using radioactive glucose and the scan resolution is around 5-6 mm. Now if you meant CM insead of MM, that’s different and well to be concerned. If that’s the case most doctors would want to do a biopsy to confirm melanoma.
Assumming it is melanoma, start exploring and positioning yourself for possible options, like a PD-1 trial, now (!) as it’s always best to be as aggressive and out in front of it as possible. If it’s not melanoma, there may well be some studies available (IPI for instance) for those, like you, who are considered high risk for recurrence.
JeffNovember 5, 2012 at 12:04 pm #57386Catherine PooleKeymaster
CT scans are quite accurate and recommended over PETS by some specialists. I think you have been adequately scanned but now need a plan of treatment. Have you looked at our Global Resource List for what centers are noted in Canada? I would definitely look into clinical trials, the PD1 as Jeff suggested. Also, go to our clinical trials resources to see what may be available. But calling the institutions is often better. Let us know how you make out.November 5, 2012 at 5:58 pm #57387
Thx Catherine and Jeff,
oops I should have written 4 cm, not mm. It is 4.7 cm x 4.3 cm x 4.0 cm.
I WISH it was millimeters. It is a fairly big tumor. Easily discernable on all the scans.
I was fortunate (?) enough to be able to watch the screen and have it shown to me and to watch all the manipulations they did. They were having a hard time deciding what it was attached to. One set of scans placed it on the uterus. One set had it not attached to the uterus, just in the pelvis. I have no symptoms really. Some mild discomfort, but not cyclical, and not anything overt.
Its a scarey process when you have a high risk for recurrence.
Thx for the suggestions. In Cda they take a very un-aggressive approach to recurrences. I have a friend who started with a similar scenario to mine (nodular, ankle, 42 yrs @ diagnosis) and she will probably not make it past Christmas. It spread to her abdomen, liver, bones etc. I feel like there is so much more we could be doing to be one step ahead, but it is difficult as this beast can turn up anywhere.
Thx for letting me share my fears.November 5, 2012 at 9:50 pm #57388Catherine PooleKeymaster
I would contact Princess Margaret Hospital in Toronto, they have clinical trials and should be more aggressive? The Mage A3 is also in many trials. Let us know what you find out.November 6, 2012 at 1:59 am #57389Chuck BParticipant Abby,
To answer your original post, WNY Pet/Ct is located in downtown Buffalo. The phone number is 716-923-2780. That is where my scans have been done.
Chuck bNovember 6, 2012 at 3:53 am #57390
Thx Catherine and Chuck.
I will definitely contact PMH in Toronto if I don’t like the way this goes tomorrow.
Does anyone know if you need a Dr’s prescription for a PET scan?
Chuck, thank you so much for the clinic & phone number. Do you know how much they charge?
I am sick tonight with worry. Lost 5 lbs in the last week the hard way.
I go to the Oncologist tomorrow to see what he thinks about an action plan. I pray they biopsy this. No matter what it turns out to be, it is getting large, that can’t be good internally.
This is so scarey. Thankfully I have an awesome bunch of women I play squash with and they wouldn’t let me pass tonight. That occupied me for a while. Back to worrying…
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