Hello,
Answers for Questions 1, 2 and 3 are inter-related.
Please be reassured again and again that the symptoms that you say are not related to cancer. its not an intermittent pain in cancer. When you have an identifiable cause (neupogen), there is no way i can relate it to cancer or decadron.
Decdron relieves pain in some cases but not in the way you cllaim. It happens in large cancer deposits wherein the pain is mainly due to edema and space occupying lesions. Not the way you relate.
Please understand that the cause of your pain is not cancer. and it is really impossible to discuss this issue over email consults as this involves more of personal interaction explaining you the pathways and mechanisms. Its not possible over email.
In you case, I am very confident that the pain is because of neupogen as it happens in all patients receiving this drug. Its the same way your oncologist thinks too.
I hope this helped, would be glad to discuss further.
Kind regards
Patient replied :
Just when I got such a comforting answer from you, I got this from the doctorspring doctor that does radiology. I think it says that all my scans can be false negatives which is horrible. Can you help me make sense out of it? It seems to say that the Gold Standard is the bone scan, but that in my case, I can't trust the bone scan. Here it is:
Hello. Thank you for posting your query at DoctorSpring.com
Thanks for your detailed mail, which gives me a fair idea about your condition.
To answer your specific queries
1) Bone scan :-
Your doubt about small mets being missed in a case like yours with dense bones is VERY
JUSTIFIED , as early lymphatic permation of metastasis is likely to be missed on bone scans
2) MRI :-
MRI alone or with contrast ishas got poor sensitivity & specificity in terms of picking up
occult bone mets , bone scan is FAR more reliable for that especially in your case with dense
bones ( ? flurosis ) its even more difficult .
3) PET/ CT :-
Osteoblastic carcinomas are well picked up by PET CT only if they are contour deforming Bone
scan is STILL the GOLD STANDARD for occult mets baring lymphatic permation.
By & large in about 95 % of the cases NO ENHANCEMENT on PET scans is reasonably specific &
sensitive marker for Lobular Ca.
Is there anything you can do to make me feel better about this. I feel like I have three false negatives. And no hope.
Hello. Thank you for writing to us again.
Please do not confuse your case with too many opinions. Your case is a clear case of good prognosis. I am not denying the generalized opinion of the radiologist who has opined about the scans. But considering your good prognosis and clinical condition, I can be doubly sure of the interpretation of your scans.
Please be assured if the reports and 2 oncologists' opinion.
Feel free to discuss further,
Regards.
Patient replied :
But, the radiologist says that the bone scan is not trustworthy. How can I have a good prognosis if the bone scan is a FALSE negative??? That is what he is saying. And then he says that the best modality for me, is the bone scan. So, that means that the best modality is a FALSE NEGATIVE. The whole thing looks totally hopeless.
My worst nightmare is that the three scans would all be false negatives. And he is telling me that is LIKELY.
Is there any way you can help me to trust the bone scan again--even though I have dense bones (which slows turnover) and lobular cancer (which divides slowly)?? If you could, it would make a huge difference.
Please help me, I am really scared and upset by the radiologist's answer right now.
One scan being negative is a possibility, but 3 scans turning out negative is improbable.
I can only suggest you to repeat the investigations after some time. There is no concern for worrying in your case. I can only reassure you that you are normal right now. A repeat negative scan would help you get relieved off your anxiety.
Regards.
Patient replied :
Dr. Eswaran,
Thank you so much for all your help. I notice that you are a radiation oncologist, so I think that you can answer this question very specifically.
Is a bone scan more likely to show false negative on a person with 1. lobular breast cancer (slow division) and 2. very dense bones (slow turnover)????
Unfortunately, this seems like it makes a lot of sense to me. But, maybe there are biochemical things going on with that radioactive tracer that I don't understand.
I am a medical and radiation oncologist. False negatives can happen in any investigation. I cannot deny the radiologist's opinion. But it does not mean that it's true in your case. I have cleared and explained it to you many times before.
The only other solution to prove your true negative status is to repeat all your scans in near future and compare it with old reports.
There is no method to show that your present negative scan has missed a positive finding of lobular cancer in the background of dense bones.
Regards