Should I be worried?

punky · March 2014

Hi everyone,

I am concerned about some test results I received and would like your opinions. I always find this site helpful since it is real situations and not just text book situations. I was diagnosed with stage 3a, ER- PR- Her2+++ breast cancer in July 2011. I received Taxol/Herceptin x12, AC x6, Herceptin 1yr, double mastectomy, flap reconstruction, 36 rads . It took 2 yrs to complete treatments and I am 1 year out. Recently I had a brain MRI for frequent migraines, abt 45 min after I had the test done my neurologist called me to say there are very concerning results showing multiple tumors in my skull that are enhancing on MRI. He contacted my oncologist and a bone scan was ordered. I got a call shortly after the bone scan saying the tumors are enhancing on the bone scan as well. Consistent with metastasis but, no where else in the skeleton. The tumors are in a location that is impossible to safely biopsy. My oncologist said they would do a PET/CT to check for enhancement. The Pet came back with no enhancement, and I was told we would watch them. I want to mention that I do go to one of the top hospitals in the US. I know they know what there doing there but, I am worried with MRI and BS saying mets (which is exactly what the reports say), what if the Pet is a false negative? Has anyone else had test results like this? When I look online I can only find situations where the BS was neg and Pet +, I can't find any situations where MRI and BS were positive and Pet neg. I would really appreciate your input and suggestions. I know you have to have faith in your oncologist and I really do, but, I had many screw ups with my test results (not from the Hosp I currently go to, but local hospitals) including a misdiagnosis on initial mammogram that cost me dearly. I know I am being a worry wart, but, as many of you know the 2 years of torture was quite traumatic, I was so physically and mentally trashed and I am very concerned about recurrence since my cancer was VERY aggressive. Thank you so much for your input in advance.

JeninMichigan · March 2014

Hi Punky

I recently had a bone scan that can back suspicious for mets to my spine after a few months of pain. I have a history of bone mets. The pet came back with no uptake. It was then followed by a MRI which only showed a pinch nerve. For what it is worth my oncologist said usually her2 mets show up in an organ while ER shows up in the bones. Hoping your pet is negative and there is another non cancer reason for the pain

Jennifer

punky · March 2014

Hi Jen,

Thank you so much for your reply. The Pet/CT was negative, the MRI and bone scan both showed enhancing tumors but, the pet was neg for enhancement. My worry is that the Pet is a false negative, although I think the Pet is pretty accurate and the tumors are probably benign. I just don't like the idea that I am growing tumors in my skull, it gets me nervous, lol. I am so glad that your spine is neg, a pinched nerve is no picnic but, better than the alternative :-) best of luck to you. Hugs and prayers.

sandilee · March 2014

I definitely understand your concern, Punky. The fact that the MRI showed tumors would make me want further explanation as to why the doc assumes they are not cancer. I know the Pet was negative, but it's my understanding that if cancer is not currently active, things may not always light up on the Pet. What you often hear is that things show up on the PET, but not the bone scan. Having the test results show the opposite does seem unusual.

Was the MRI done with contrast, and have you been able to see the actual film on the MRI? I think I might want to talk to the neurologist again and have a discussion about what these tumors might be if they are not breast cancer. If you haven't, maybe you can go over the film with him.

It sounds like you are no longer on Herceptin, and have had no treatments for a year. Would you consider getting another opinion about the advisability of going back on Herceptin for a time?

punky · March 2014

Hi Sandilee,

Thanks for the reply. The MRI was done with contrast and I did view the films. The tumors are voiding on T1 and enhancing on T2 suggestive of malignancy. My oncologist then ordered the bone scan and again the foci points are consistent with the location of the tumors on MRI. My oncologist said she spent a few hours with the radiologist going over the films and the location makes it impossible to biopsy. They decided on the Pet to confirm mets. I don't think they were expecting it to be negative but, were very happy that it was. I see the neurologist next week (I see him for migraines and nerve damage) and will discuss this with him. I have been considering another opinion. My family is sooo happy right now that I don't want to bring them down with my doubts but, I am nervous. I see my oncologist in a few weeks for my check up and figured I would speak to her about the situation and if I am still uncomfortable then seek a 2nd opinion. I go to a top hospital, my doctors are consistently on America's top doctors, which makes me feel like I am being neurotic over nothing. I am fearful of exactly what you suggested, that the tumors were there but didn't show up in 2011 and the chemo killed them creating a mass of dead cells, but because they weren't radiated are now growing again which would make them less likely to show up on the pet. I will discuss this with her when I go. I was hoping someone else had kooky results like this and could put my mind at ease. The remainder of my body is clear of malignancy. I cannot continue on Herceptin indefinitely due to the fact that I am one of the 5% who now have permanent heart damage from it. I guess I will have to wait and see but, as we all know, that is not easy. LOL

Should I be worried?

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