Well tomorrow I see my oncologist and I have a lot to say. I want a clear answer or theory on how my mri showed spinal bone Mets decreasing and new? Found at same time. I have my own theory and honestly, do not want to do pet scans anymore. I do not think they are all that reliable. I don’t even know if there is an answer to it. The pet showed sacral and mri did not find it. Pet scan didn’t show any in lumbar but mri did. I want to understand this. The radiation oncologist’s answer was this is complicated. Yes no shit. That really helped?! It is one thing to accept living in unknowns as we all do but to me as a nurse, this is ridiculous and makes no sense. It makes me feel frustrated and angry. I don’t know what to think about it all. Please send happy thoughts, prayers, well wishes in the hope I get a sane answer.
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Frances💕
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Francesca10
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I join the confusion bandwagon... My bones met did not show on CT or bones scans so I now have 3 monthly PETs ... I was told PET was the best way to assess early cancer activity but sounds like a bit of a bold and quite possibly incorrect statement in light of everything being shared in this tread...When you think you finally understand tools and techniques to fight the beast turns out you are back to square one! What an emotionally draining roller coaster!
I am so sorry for you. Seems our only solace is to be able to manage our own expectations on results day and when we get a bunch of conflicting results that is close to impossible.I hope your medical team will be able to give you some answers. Wishing you strength.
I have bone mets everywhere and only ever have ct scans
Many of mine are sclerotic and sclerosis can mean healing also
When I asked my oncologist how she could tell the difference between a new sclerotic lesion and a healing met..she waffled on about it being difficult to differentiate between them...makes me wonder about the usefulness of these scans sometimes..think they’re better for soft tissue lesions
Francesca the PET measures glucose uptake. As cancer progresses it uses glutamine more. Your oncologist probably doesn't even know this. I suggest you read How To Starve Cancer by Jane McLelland.
Wishing you clarity today! I feel the same way you do! I, too, have my scan next month. I am perfectly fine until I have to see an oncologist or a radiology technician! Xoxo
The whole situation is frustrating, living with pet scans, oncologist appointments, treatments, side effects, etc. I think most of us were doing all the right things, watching our weigh, exercising, eating healthy, then the diagnosis. No wonder we are in shock and mad as hell. Praying for you and good luck.
I’m confused about scans. My mets were found by mri scan looking for arthritis. The oncologist ordered a bone scan and ct scan and told me that they only found the mets on those because they had the mri to use as a guide. I was told that they had probably been there for some time - so I wonder if they were missed on a bone scan done a year earlier. When I ask where the mets are i’m told they are widespread, just widespread. Following my last scan I asked if there were areas of healing as well as activity, oncologist told me they appeared the same. Like you I am feeling frustrated!
I have bone mets. I've always had bone and CT scans for them. 3 different ones, 3 different states. It's always been very understandable. However, in my first year, I always wondered why I didn't get PET scans. The oncs all told me that for bone Mets these are better.
God bless you, Francesca! Prayers for some answers that provide you a measure of relief from all the uncertainty. We live in a crazy mix of hope and despair and all of us share that anger at times too! I wish you a beautiful weekend! XXOO Linda 🙏🏻❤️
Ok, let me start with you are right to be pissed off. Second, Georgetown Lombardi does not use PET scans for MBC diagnosis because of seeing too many women misdiagnosed. AND, for me, why would I want the massive dosages of radiation that a PET scan gives us when I can have a CAT/CT instead with a lot less radiation and get more reliable evidence. The explanation I have been given is that BC does not divide as quickly as some other cancers therefore the PET is also not as reliable. Give me hell.
I do also include a full bone scan but the two together still do NOT compare to the volume of radiation one gets from one PET. Maybe they do them because they get so much more money from the scan, not sure.
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The best and worst of my MBC journey: all in three months!
Feeling low. Wind out of my sails
Lobular carcinoma on scans
