Resolved question:
I have lobular breast cancer--had lumpectomy with poor margins/8 nodes positive (removed). ALLRED score of 8 and Her2 negative. So I am very estrogen positive. I am undergoing chemo, and will then do mastectomy, radiation and aromatase inhibiitors. I am 58 years old.
I had a PET/CT scan after they discovered the positive nodes. The ct part of the scan showed diffuse sclerosis almost everywhere, but no enhancement. The oncologists immediately thought that it could not be cancer, because it was too symmetrical and even. Since then I have had 2 negative bone scans, an MRI that showed no enhancement, and 4 bone biopsies from the place that looked worst (the top of the pelvis--iliac crest)--all four negative.
I ended up going to a bone specialist, and he did a bone scan, and found that I have the densest bones in the world. I am way out beyond the 99th percentile.
So, they decided that the salt and pepper look on the ct scan was from fluorosis, or some congenital bone condition. My oncologist pronounced me with no bone cancer. (I also had a number of blood tests that showed normal bone turnover).
But, I have become worried that we are missing the trees for the forest. In other words, I have this bone condition which makes the ct scan and the mri look dotted and dark. The only thing to go on is the lack of enhancement on both. I am worried that I have this dense bone condition, but on TOP OF THAT, I MIGHT HAVE A SMALL BONE METASTASIS. My doctor thinks I am wrong. I am afraid that the bone condition is HIDING the mets.
So, I have a three part question:
1. BONE SCAN: I know that it shows enhancement when there is bone turnover. But, I am worried that since I have lobular cancer (which divides slowly) and since I have this dense bone condition (which must cause low turnover) that any osteoblastic bone cancers might be hidden by this.
Do you think this is likely?
2. MRI: The mri of my pelvis and spine showed a darkened and stippled pelvis and I think spine. That is from the dense bone condition. BUT, if there were an osteoblastic cancer on top of this, would it have shown up? What would it have looked like against that darkened background? (It showed no enhancement, but I know you can't always trust that an mri will show enhancement).
3. CT/PET Scan.: The whole thing looked like salt and pepper. Again, due to the dense bone condition (fluorosis, or whatever). If there were an osteoblastic cancer on top of that, what would it have looked like? Or would it have just blended it? The other question is: I know that lobular cancer does not light up well on PET Scans because of the way if metabolizes glucose. Can I trust the "no enhancement"--or would that have been missed because it is lobular cancer?
Thank you. I hope you can reassure me that these scans can be correct, and that my dense bones do not hide cancer in each of the above 3 modalities.
Submitted:
4 Days
Category:
Radiologist
Hello, 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 samll mets being missed in a cas elike yours with dense bones is VERY
JUSTIFIED , as early lympatic permation of metastasis is likley 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 mor 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 raesonably specific &
sensitive marker for Lobular Ca.
Do let me know if you have any more queries or you require clarifications on the above replies
Thanks
Are you saying that I can't really trust any of these tests? That I could have bone cancer, and none of the scans would have picked it up?
This is very scary. You are telling me that all three tests there could be all false negatives. It feels really hopeless.
You say that the bone scan is the gold standard, but, then you say it is likely to be a false negative.
I don't know what to think. Help!!
Also, are you saying that pet scans enhance with lobular cancer 95 percent of the time. Or am I reading that wrong?
I honestly hoped you would tell me I could trust all 3 modalities. Now I find out I can't trust ANY???
Hello. Thank you for writing to us again.
I am sorry I did not mean to create more anxiety in your life & apologise for your agony
.. But I was just being honest & giving u the best possible professional opinion in my capacity ...
I would rather be truthful than give u false hope
Nothing in medicine like all other things in life is 100%... Black or white .... So most scans give us macroscopic details .... As u know sometimes carcinogenic cells can be very aggressive & in my practise I have seen such cases ... Though not very common ..
Feel free to discuss further and once again i sincerely apologise for creating more anxiety.
Regards
So you think all 3 of my scans could be false negatives. And the one that you say is the "gold standard"--you say it is VERY likely to cause false negatives. Is that right? Are those false negatives only on a microscopic scale--or are they macroscopic?
Hello. Thank you for writing to us again.
I haven't seen your scans . So I really don't know .
About false negative bone scans, I was giving u a general idea about about the sensitivity of this test ...
The point I am trying to make here is that , you need regular follow up scans & path investigations every 3-6 months ... As a single negative scan for mets should not give you false assurance & delayed mets are also known . So please be regular & vigilant in your follow ups
Feel free to discuss further,
Regards