Yes, Leroy can be more of a brat
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Kristin,
Do the metal tags prevent you having MRIs…they always ask about metal in the body before they do one.Kris
Thanks Kristin. You are right in that it is probably done often and the surgeons may very well aware of this. I am so glad though, that you have brought this up.
Best wishes,
MarionI just dug out my surgical record to look at it, but it doesn’t mention anything about the metal tags. My oncologist at the time told me about it, but he’s moved to Texas. It sounded like they did it because the tumors weren’t very big, and they wanted to be sure to be able to find them again later.
I wish I could be more helpful… But at least it’s worth asking about. I hardly think I got very innovative treatment at that hospital (University of Kentucky) so it’s probably not some brilliant new technique.
Kristin…I wonder why this is not being done more often? It just seems to make sense to have a physical locator at the tumor. Do you have the medical records describing this particular procedure? If so, would you mind sending a note to me describing just that? I would love to mention this to a select group of physicians.
Thanks so much,
MarionWhen I had my second surgery (the one that failed) the surgeon attached some kind of metal tags to each tumor so that they could locate them more easily later. Those always show up on my scans. Is there some way they could do that, maybe laparoscopically?
You can’t imagine how many people all around the world are wishing you well!
Warm hugs,
The other Kris(tin)Kris…what is happening in your case is a good example as to why there is no early detection for this cancer, I think.
On the other hand though, there is the hope that Leroy and Junior have disappeared for good. I know that is wishful thinking combined with not much logical rationale but, I am referring to some of the lectures where physicians and researchers had been puzzled as to why some lesions have disappeared; those very same lesions which clearly showed up on previous scans.
More likely though is that the current methods of detection simply have not been perfected It confirms the comments made by several surgeons in that the true extent of the disease can only be determined by the naked eye.Thinking good thought for you,
Hugs
MarionKris,
I can’t give you any advice, but I do remember that although my husband’s tumor was very large it didn’t show up any where or on anything except when they did a needle biopsy and then the PET Scan. Not sure why that was. His had not spread anywhere and was only in the liver. I’m hoping you will get some help & some answers soon. This all has to be so frustrating for you. Try not to let it get to you. I’m sure they will sort it all out.
Darla
Sorry, when I read it I remembered. OK so now this is really the dumbest I have asked. I assume to go in and remove Leroy is out of the question? I realize they don’t see it but it did show on the PET. If this is so frustrating for me I can’t imagine how frustrated you are!
LAiny,
The reason they know I have a tumor is that they physically saw it when they opened me up in January to reroute my digestive track. It has never shown up on CT, ultrasound or MRIs, but it does show up on PET which I had about a month ago and it showed slight growth on Leroy (uptake from 5.7 to 6) and a bigger jump in Junior (from 4 to 7). They hadnt really grown much in size, just in activity. As to second opinion, I have my normal oncologist in Kalmar, the cc specialiest in Vaxja, a GI specialist oncologist in Linkoping, surgeons in Linkoping and Stockholm all looking at my case. It isnt that enough people arent trying and putting their heads together, it is truly that Leroy is a freak of nature. I have never heard of anothers tumor hiding. I know that when people get staged for sugery, they often find tumors not located on the scan, but one the size of a grapefruit? Makes no sense.Kris
I am not sure. The ultrasound was done with contrast, nothing was said about it being 3-D. The ct scan was done in conjuction with the PET Scan. I will ask my doctor about it. Thanks for the heads up.
Kris
Kris…this is crazy. How can they not show anything??? If they do not show up how do they see they are even there to begin with. I don’t remember if you have had a PET lately. Beside the kitty, smarty.
The only suggestion I can make is as we say, another opinion? This has to be reeking havoc with you, it would me. Gosh, I feel so bad. I hope someone can come up with ideas. Love, love you, hang in.The ultrasound did not go as planned. They still could find no trace of Leroy or Junior. They could not take biopsies and the could not outline the tumor. So no radiation, RFA or other treatments for me right now. I am not sure if they are going to start me on Erbitux since we cant check for the mutation. I will have a discussion with my oncologists sidekick on Monday. I have already asked through the secretary if a new MRI would be beneficial. We will be asking if there are newer scans machines than the ones we used and we will be asking if I can have RFA through a traditional surgical procedure…open me up and zap me.
If anyone else can think of suggestions or questions for my doctor, please chime in. I am feeling like all doors are shutting and leaving me no options.
Kris
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