Should I get a PET scan?

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nye1980
nye1980 Member Posts: 69
edited October 2016 in IDC (Invasive Ductal Carcinoma)

I found a lump in May, requested a biopsy that the BS did not think necessary after a mammogram and ultrasound, and on June 1st learned that I had breast cancer. That BS said the next step was a breast MRI, but I ended up changing to a different BS and he said an MRI wasn't necessary as he recommended a mastectomy after looking at my mammogram. As it is when you first hear "cancer," all I wanted was for it to be gone. It never occurred to me to ask for more imaging at that point. So a week later I had my right breast removed and SNB. One positive node so my BS removed a total of 28. While in hospital, due to nodal involvement, we went ahead with more imaging. My BS said a PET scan wouldn't be effective since I had just had surgery and all of that can affect the results. So I had CT scans of my lungs and liver and a bone scan. All clear.

I'm now heading into my fifth of six rounds of TAC chemo. I'll have radiation and hormone therapy as well. My MO, BS, and the other doctors I've spoken to for second/third/whatever opinions all agree that more imaging isn't necessary unless I show symptoms. I know what the research says as well. I guess I'm wondering if I should be getting scanned again at some point, maybe after chemo or radiation? Surgery showed clean margins and both my BS and MO feel like they got all the cancer, but how can we be sure?

I just want to know I've done all I can. If my scans were clear a few months ago, can we assume all is well? Should I ask for a PET scan just to be sure? Can we be sure? The thought of a scan makes me nervous, but then I also worry that I'm not making the right decision because I'm afraid of what they might find.

I can't help but regret not getting an MRI to start because maybe I could have saved some of my lymph nodes and/or explored neoadjuvant chemotherapy. I'm quite anxious about lymphedema from radiation, having so many nodes removed.

Thoughts?



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  • inks
    inks Member Posts: 746
    edited October 2016

    I am not sure if they would even radiate your nodes again since you had ALND. Did you have extranodal extension? Radiation will raise your risk of lymphedema by about 20%. You do have to weigh the risks of radiation carefully, radiation after mastectomy is only recommended under certain conditions and the benefit may be as little as 5%.

    I can relate to the anxiety and worry about cancer recurrence. But you also have to keep in mind that scans and especially PET scan has a lot of radiation. You have a lifetime limit of radiation. If your scans were clear before surgery would they really be any different after chemo or radiation. Listen to your second and third opinion doctors and save the scans for when some issues arise.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited October 2016

    Hi!

    I had an MRI and a PET scan just after being diagnosed. They both showed the same thing: a large (5 cm.+) tumor on my right side, and one compromised lymph node. Then, I had chemo, which wiped out the active cancer in both the breast and node, again demonstrated by an MRI and PET scan. But, I still had ALND (20 nodes removed). I still had surgery (lumpectomy). I still had radiation on the right side (including my armpit). I'm still doing hormonal therapy (Aromasin). Getting a PET scan didn't alter my treatment plan at all, really. I'm with inks; save the scans for any future scares. By the way, though I had radiation after ALND, I show no signs of lymphedema. Best wishes!

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  • nye1980
    nye1980 Member Posts: 69
    edited October 2016

    Thank you, ladies. This is super helpful to read.

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  • Blessed2016
    Blessed2016 Member Posts: 37
    edited October 2016

    nye1980,


    Sorry you are going throug this but, hopefully this site can give you some reassurance. I was diagnosed in late June of this year and I asked my MO at the Seattle Cancer Center Alliance about doing a scan and this was her answer. " we don't do pet scans or ct and bone scans unless it stage 3 or above". I'm a stage 2b with 3 out of 11 nodes. My fear was of course has it spread since I don't know how long this has been brewing and according to my first surgeon it could have been years. Well. Y second surgeon assured she didn't believe it was years but several months. I had a normal mammo in Aug of 2015. So unless it wasn't caught because of dense breasts or not big enough to be seen, I believed my second surgeon over the first. I agree about the radiation exposure to the body without any actual problems. The pet scan won't pick up individual cells, only ones that have formed tumors. So, I did my research, asked my current 'MO and decided not to do any others scans and just trustin God that I have been healed. I have two more doses of AC then will start Taxo followed by radiation. Unless I have any issues, I'm going to trust God, trust my Dr's and make sure I keep up with the latest news on treatment and just do the usual tests that are done periodically. I hope this wasn't all over the place for you. By the way are you from NYC?

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