Imaging Protocol w/IDC & New Primary Cancer DX

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Spoonie77
Spoonie77 Member Posts: 925
edited October 2019 in IDC (Invasive Ductal Carcinoma)

Hi all, hoping someone can help me out.

Been trying to find out on Google what the "standard protocol" for whole body imaging (PET Scan, etc) is for patients with prior history of Breast Cancer and then receiving a diagnosis of a new primary cancer. Not having much luck in finding what is indicated.

Anyone know?

I mean, it just boggles my mind that when a dr finds a new cancer in a patient with a history of prior cancer it's not just ordered right away from the get go. Seems so bizarre.

My Endocrinologist says it is not standard protocol to order a PET Scan on new cancer dx.

I was dxd IDC in 2018. Just dxd with Multiple Sclerosis in Sept. Then, last week was hit with a dx of Papillary Thyroid Cancer.

Though it is rare for BC to METs to Thyroid, it can happen. I want to be prepared to ask my surgeon and my MO for a PET Scan. I can't handle not knowing if there are still OTHER cancers lingering or these ones appearing somewhere else undetected.

Anyone have any info or suggestions for swinging my team to see my view point and ordering one?

What have your experiences been with imagining when being dxd with a new primary cancer?

TIA

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited October 2019

    bump

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  • SeektheGood
    SeektheGood Member Posts: 11
    edited October 2019

    Hi Spoonie,

    I have read a lot of your posts, your strength and courage are amazing! I was first dxd in 1997 with TNBC, at that time my onco ordered CT and bone scans, no questions asked. In march of 2019 dxd with two new primaries in the opposite breast. My breast surgeon said that she would feel much better if I had scans, but that over the years there were more stringent requirements for ordering scans. (Thanks probably to insurance companies, my opinion, not hers.) She then asked me if I had any recurrent symptoms such as a cough or aches and pain. I hesitated to answer because I really didn't think my morning cough would be related, but I then stated that I had a persistent morning cough. Scans were ordered. Sooo, perhaps if you have a symptom to report?

    Also, Don't hold back, let your team know that your worries about additional cancer is ALL CONSUMING EVERY WAKING MOMENT!! I know that I was in that state of mind with the second diagnosis. I could not eat, sleep or even breathe, I paced the floor constantly. I finally got some peace of mind when the scans were clear. Wishing you the best

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited October 2019

    Thank you for the wonderful advice, SeekTheGood!!!! Ever since this new dx last week, cancer has been first and front-in-center in my mind. Just can't shake it. Sucksville, population me.

    I totally agree with you in that I too think that the issue with ordering scans can be insurance related a portion of the time. Like you, I don't want my health and peace of mind dictated by insurance. I'll definitely be sure to speak up, hope they will listen to me.

    My new MO does seem to be empathetic and perhaps when I see her in Jan, after my Thyroidectomy, she'll be willing to order a PET to put things to rest. Or, maybe by then, like you said, I'll have a symptom to bring up. In fact, I have had a barky/non-productive cough that started up this summer and is still here. Mentioned it to her at our first appt, but maybe after it being around for so long, that will be enough.

    Thanks again for sharing your thoughts and experience. I'd be so lost without this forum. Truly.

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  • SeektheGood
    SeektheGood Member Posts: 11
    edited October 2019

    Don't wait until Jan., call your new MO and let her know that this is front and center in your mind, and that you just can't shake it, REALLY can't shake it! Ask for the scans from her, I would. You need some peace of mind now.

    I agree with you on this forum, though I tend to read more than I post, it has been a lifeline. Thank you to all.

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited October 2019

    Seek, terrific advise!

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