Recurrence and Now Down the Rabbit Hole
I was dx in 2011 with IDC ER+PR+Her2-. It was in the left breast around 1.2cm. I had a lumpectomy, chemo (TCx4) and rads. I couldn't tolerate Tamoxifen so I took Aspirin each day as the theory back then was it could keep inflammation down and possibly ER+ away. So here I am 13 years later and my mammo showed I now have 2 small masses in that same breast. It may have been there for a year as it felt like scar tissue to me and the mammo last year was considered all clear.
Anyway, I went to my surgeon who ordered an MRI just to be sure and that lit up in the left breast. He then explained a little about surgery, but said I needed to go back to my oncologist first. Oncologist put me on Arimidex that day. He then did genetic testing which was negative. He did a bone scan which was negative. Next he did a CT scan which showed enlarged lymph nodes in the lower right area of my abdomen. Because of that he sent me for a PET scan that lit up in that same area. He then did tumor markers that were all normal and finally he now ordered a biopsy of that area because he said it could be a metastases. He also said it could be a completely different cancer. The biopsy is in a few weeks. That was the soonest our hospital could get me in. So, I have had every single test and I am now almost 4 months out from the mammo that showed recurrence.
I guess the question is has anyone had a PET that lit up and then have it be nothing? I was terrified of surgery and the medication I am on now, but that seems to be the least of my worries. I cannot get through more than an hour or so without thinking about this situation. I am numb.
Comments
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hi @rockym , I am very sorry that you found yourself in this situation. You are under a lot of stress right now and rightfully so. Your doctor is very thorough and it is correct that biopsy will show what you are dealing with.
Speaking of scan vs biopsy results… my case is an example of initial biopsy went wrong.
My mets were discovered following ER visit, when I was in another part of the country; my MO got involved and requested local team to biopsy the spots on my liver. However, the doctor who did the biopsy …. took it from a wrong spot. My scans and blood test (tumor markers, liver enzymes) were screaming cancer yet the biopsy was negative.
luckily for me my MO disregarded the results and promptly organized another biopsy in my hospital of care.
Is there any chance that your doctor can speed up the process and insist on fitting you in between patients for a biopsy? Perhaps you can talk to them and they can get you in faster? Waiting several weeks is way too long and, in my opinion, quite cruel.
Sending caring thoughts and support your way0 -
Hi @rockym, I'm so sorry about the recurrence and that you have to deal with the uncertainty from the PET results. It is possible for areas on PET scans to light up because of inflammation, infection and autoimmune disorders among other things. After an MRI found a lesion that looks like a met in my acetabulum an FDG PET lit up in over 20 locations including the hip. Ortho oncs warned that a biopsy had a >75% chance of irreparably breaking my hip so an FES PET was done looking for estrogen receptors. Only my lungs lit up but that corresponded to pulmonary fibrosis from radiation which also has ER+ receptors. Although the location, size, appearance and my age give the lesion a 95% chance of being malignant it was decided the best course of action was to monitor it for growth by MRI. One positive in your case is that the suspicious nodes can be biopsied.
I have learned that scans and google aren't infallible diagnosticians and there are some unusual medical situations that even the best doctors don't have solutions for. In my case the differentials are an ER+ met that didn't pick up tracer because of its location, a flipped receptor met, a met from another cancer or a benign lesion. I have decided to accept the uncertainty, be grateful I can walk and hope for stability.
The few weeks to the biopsy must seem like an eternity but is often the norm. Hopefully the nodes will be benign and you can refocus your attention on your surgery. Let us know how it turns out. All the best for a good biopsy result and a successful surgery.
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Thanks for the replies ladies. I am hoping there is some strange inflammation in there. This is probably one of the only times I wish I had some symptoms that would make sense. All I know is the PET scan doctor wrote the report to confirm my recurrent breast cancer and then wrote his impression of the lymph nodes in the abdomen were "Probable metastatic FDG avid right lower quadrant mesenteric adenopathy." It will be =a long 2.5 more weeks.
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