Why don’t we all get full body scans? Why do they try to ration scans?

Posted by jessicanell @jessicanell, Sep 21, 2023

I’m 52 w right breast stage 1A er/pr+ her2- Oncotype is 0 ki67 was ~5% no positive lymph nodes in the 2 that were taken. Lumpectomy w reduction (I love my new French Rivera style breasts! Was shocked oncoplasty was an option!!).

But before I knew all of this, I was scheduled to go on a trip right after my positive biopsy results and would have to postpone surgery for a few weeks.

I asked for an MRI before leaving so I could ease my mind that there were no surprises that the mammogram (which in January saw nothing, then in June detected an architectural abnormality— I have dense breasts, so go figure) might have missed.

The surgeon said “I don’t need an MRI to move ahead” and I said “BUT I DO.” And he made a comment about how Westerners need to take advantage of all the tests. I thought to myself — he’s the best, and I’ll never see him again after my surgery. He signed me up for the MRI and another mammogram/ultrasound (previous ones done at another hospital).

By the way after my first diagnostic mammogram in January was negative I asked for an mri. My primary put in for it. Denied. Then detected architectural abnormality at my annual mammogram in June. Same breast, same place where I thought I had felt a rice grain sized lump back in January.

All looked good on the MRI and mamm/ultrasound. Nothing else seen but the tumor which now appeared 14mm vs 8 that the original biopsy/mammogram reported. Lymph nodes looked normal. I went on my trip. Came back and got on the rollercoaster that is breast cancer treatment.

It’s so messed up. Why do we have to meet with a surgeon first? How ridiculous. We should meet with a breast oncologist first.

Why wouldn’t every woman no matter the stage get a full body scan before any surgery to avoid surprises and to know exactly what the baseline is?

Why did I sit with my brilliant renowned lifesaving oncologist and nod my head when she said we don’t do any further scans at this stage?

There is a 10% recurrence rate for this type of cancer right - give or take? And I hear of so many horror stories of recurrence after the torturous treatment, the metastasis that no one knew about until it was too late. Until the cry out in pain gives the dr the ok to check the box on the insurance form to authorize a scan. But by that point it’s spread all over.

And do we believe that an earlier regular scan wouldn’t have helped? Wouldn’t have caught it earlier?

Is the thought that if we can see it on the MRI then it doesn’t matter if it’s a tiny tumor on the hip or tons of cancer all over the bones, liver etc? This is a serious question.

Did I read correctly that prostrate cancer gets a full body scan, but breast cancer you need to be at stage 3 plus?

I would like a full body scan now. Before I start Anastrozole. I don’t want to get years into this only to discover it’s also over here and now we need to change courses and oh by the way you are terminal.

I will likely pay for one (luckily I can and I am still working) if I can’t get someone/dr to put in for it/ins to authorize.

Help me understand why I should not.
Or did you have a full body scan w stage 1 no Mets to lymph nodes?

I’m at a prime breast cancer teaching hospital in a major city.

Also w stage 1A like mine do you do 6mos mri, 6 mos mammogram? I think they told me I’ll be back to mammograms every year. I don’t like that either.

Help me understand why we should accept the not knowing.

Jessica
Mother of 17/19 y/o, wife, daughter, sister. Today was my first day of 15 of radiation xo

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Hello. Smaller, cheaper, faster, MRIs are being developed. http://www.science.org. MRI for all: Cheap portable scanners aim to revolutionize medical imaging. http://www.massgeneral.org. New study identifies the missing piece for low- cost high quality MRI scans.

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@maureenmckean

I’m shocked you aren’t on the 6 month protocol. I had ADH which is not cancer but indicative of an increased risk and I’m on the 6 month protocol. Which is essentially a mammogram and mri yearly.

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Totally agree, Maureen and thx for your concern! I pray I don’t have to pay out of pocket! Xo

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@semurrey

Totally agree, Maureen and thx for your concern! I pray I don’t have to pay out of pocket! Xo

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Where are you located. I went to a women’s breast center near Boston Massachusetts. I think you need a second opinion.

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@colely

Hello. Smaller, cheaper, faster, MRIs are being developed. http://www.science.org. MRI for all: Cheap portable scanners aim to revolutionize medical imaging. http://www.massgeneral.org. New study identifies the missing piece for low- cost high quality MRI scans.

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Thanks so much for posting these helpful links! On it! Xo

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@maureenmckean

Where are you located. I went to a women’s breast center near Boston Massachusetts. I think you need a second opinion.

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I see an oncologist, Caroline Block, MD at Dana Farber in Boston. I’ve yet to see her after surgery and radiation in January but will see her soon after mammo in October.

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@semurrey

I see an oncologist, Caroline Block, MD at Dana Farber in Boston. I’ve yet to see her after surgery and radiation in January but will see her soon after mammo in October.

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This is who I see. If you want a second opinion. The whole staff is so nice and supportive and she’s the one that put me on the 2 times a year check with MRI and mammo every year. Good luck!!

Actually I will private message you. It’s not letting me copy and paste it.

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