No body scans?

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IAmACat
IAmACat Member Posts: 108
edited October 2019 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hello everyone. I am finishing up chemo, and my doctor says there will be no body scans to check for remaining cancer (I had cancerous nodes left over from surgery before chemo started) or recurrence. No future scans, period, with the reasoning being that scans only pick up medium-size tumors, not tiny little ones sprinkled all over, and that the scans are expensive. (??? Is the doctor paying for it? My insurance is decent.).I asked if I would get one if I had bone pain, for example, and was told yes.

I don't know if I am reading posts wrong...but aren't many of us getting routine scans, say every 6 months? And I am stage 3c, her2+, so I am a prime candidate for follow-up imaging. Is this normal??

I am thinking of getting a second opinion at another hospital.

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  • pupmom
    pupmom Member Posts: 5,068
    edited September 2019

    I think that is outrageous, and I would start MO shopping, if I were you. I had just two positive nodes and got a bone and 2 CTs. (I probably had too many and my husband finally put his foot down when my first MO wanted to do another CT, "just to check.") Anyways with your dx you should at least have one full scan.

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  • illimae
    illimae Member Posts: 5,710
    edited September 2019

    I agree, especially stage 3 and HER2+. Personally, I’d push for scans or find another MO that would do them. Good luck!

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2019

    Many MOs do not do routine scans for the fear that the scans themselves can cause cancer. The standard of care is generally not to do them, since the studies have shown that outcomes are the same as far as overall length of survival when scans are done versus not done.


    That being said, those studies are from the 1990s. They were 2 small studies from Europe. They do not take into account all of the current day treatments we have, and it totally and completely irks me that the standard of care for monitoring so many patients is based on such old, small studies. I pick my battles, and just go with the "no monitoring", but the lack of current studies annoys me.

    In the meantime, write down any worrisome symptoms in the notes on your phone. Keep a symptom log. Note the date it starts. When you add a new symptom, if old ones have cleared up, mark them with an X, rather than deleting them. This allows you to discuss symptoms you've had at your appointments, and seeing how many have resolves is reassuring. If any persist for 2 weeks, call. It's nice having the information on when it started documented. This is my system and it has worked well for me.

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  • mac5
    mac5 Member Posts: 135
    edited September 2019

    Is there a thread for Invasive and DCIS recurrence in the other breast?

    I'm nine years away from mastectomy of my left breast. No PET scan and no NED. I was told the chance of recurrence in the right breast was 6% or less.

    Today I've had a biopsy of the right breast for a mass that was characterized as a BIRAD 5.

    This mass is so much like the previous one, I could probably tell you what the Pathology Report will say.

    Beverl

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited September 2019

    I finished my first year of treatment 7 years ago. Scans were never brought up. I still have port, so regular flushes and MO visits.

    Until January of this year, no scans. Then I mentioned to MO something weird was going on the other side. Yep, it’s back. Would regular scans caught it any earlier? Probably not.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited September 2019

    Hi!

    I was Stage IIIA and HER2+, and I had a PET scan before chemo, a PET scan after chemo, and a PET scan to look at a spot on my left femoral neck after radiation. But, that was with MO #1, who was a scanner.

    MO #2 is not a scanner. I get regular mammograms and dexa scans, but that's it.

    I think it's MO-specific. Some scan; some don't. I'll bet you could find an MO who is a scanner if your really want to.

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  • IAmACat
    IAmACat Member Posts: 108
    edited September 2019

    Speak of the devil. My MO just scheduled a bone scan and a CT. 

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2019

    Hoping they are clear.

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  • IAmACat
    IAmACat Member Posts: 108
    edited September 2019

    Thanks! They are scheduled for a month and a half from now.

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  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 609
    edited September 2019

    I had a bone scan and a CT scan before I started chemotherapy. My MO said that if they had not been clear, "the whole game would have changed" Now I'm having rads and tamox and I don't know when I'll have scans again, but I think it's necessary to have a baseline. I hope your scans are clear. Good luck!

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  • IAmACat
    IAmACat Member Posts: 108
    edited October 2019

    Thanks. Here are the results: some random spots that are not correlated with lesions, except for medullary sclerosis on the ninth rib that is too small to decide what it is, with close follow up suggested. I looked up medullary sclerosis, and it means a hard spot on the marrow side of the bone.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited October 2019

    So you’ll have another bone scan in a couple months?

    I’m also ‘curious’ about your screen name especially since your avatar shows colorful flowers - I’ll venture to guess that perhaps you’re figuring on having the proverbial nine lives!

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  • IAmACat
    IAmACat Member Posts: 108
    edited October 2019

    Hi there! I don't know what is going to happen next. I like cats and I like that flower picture, but those two aren't connected.

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  • star2017
    star2017 Member Posts: 827
    edited October 2019

    I was told no scans too, unless there was cause for concern, like persistent pain or bloodwork issues.


    I’ve had scans ordered twice and so far all good.


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  • mccathyg
    mccathyg Member Posts: 38
    edited October 2019

    Strange. Proviso that I have had several recurrences and I live in Hungary. But I have CT, Bone scan, chest X-ray and ultrasound of my abdominal area annually together with blood tests. Basically I am on some sort of three monthly checks....

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