Pet Scan - Lymphomas Message Board

Denise F · 05-13-2002, 05:35 PM

Has anyone had a Pet Scan and had the results be wrong.
My Mom had a tiny breast lump removed and biopsy suspected Non-Hogkins Lymphoma but there wasn't any more tissue left to do further tests.She then had a Pet Scan
and the thryoid lit up. So they did surgery had removed half of it. It was very enlarged but non cancerous. She's
had numerous tests including bone marrow biopsy and all
are negative except for an elevated protein level in her blood that the DR says is present with lymphoma.No other
symptoms of swollen lymph nodes, fevers, or night sweats.
Dr. wants to see her in three months.My concern is if
we have another Pet Scan done how can we ever trust the results? Also yesterday she noticed a lump in her back
nowhere near a gland. Could this indicate lymphona?
She says it is not sore. Should we wait the three months before seeing the Dr. or is this development
something we should check out right away?

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vedstone · 05-13-2002, 09:08 PM

Hi,
I can only give you my experience. I, too, was diagnosed with non-hodgkins lymphoma. I only had one bump and it was on my scalp just under my hairline... nowhere near a gland. It was never sore, I never had any kind of sympton other than a little fatigue. So, in my experience, I had very little symptons, but still had lymphoma, so it can happen.

Also, about the original bump and biopsy... I had to have 3 separate biopsies done before a diagnosis could be made because non-hodgkins lymphoma is very hard to diagnose with a small biopsy (or so I was told). If they were unable to get enough of a biopsy then the Patholigist may not have been able to analyze it well; HOWEVER, he/she should have said it was "inconclusive" rather than "non cancerous" if that was the case. A bone marrow biopsy that comes back negative does not mean she doesn't have lymphoma; it will only mean that it has not spread into the bone marrow. Usually this test is done to stage the cancer.

About waiting 3 months... lymphoma is a "slow" spreading cancer compared to many other cancers. She may not have lymphoma at all, but if she does, the results of all the other tests indicate it is in a very early stage and will probably remain there for a while. HOWEVER, and this is a big point, any time she experiences discomfort or symptoms she should IMMEDIATELY report it to the doctor. Finding a lump would fall into this category. She should definitely call the DR and discuss this find with him/her. It may only be an infection, but let the DR decide that.

Denise F · 05-14-2002, 11:35 AM

Thanks for all the info. I guess we should have that new lump checked out. The tiny lump in the breast they were pretty sure was lymphoma but said it was highly unusual
to present in the breast. They would have liked to have more of the tumor to test but the tumor was too small and
the surrounding tissue was ok. They had enough tissue to
test in the thyroid and said it was not malignent there.
She's been going thru all these tests since Christmas
and it's wearing her down. It doesn't help that my
Dad died three weeks ago. I just dread suggesting she
should go back to the Dr. and maybe start another round
of this seemingly endless testing. But, I don't want
to let it go either. I'm not ready to lose my Mom too.

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