MO not ordering PET/CT scan usually 90 days after treatment

mmbNaplesFL
mmbNaplesFL Member Posts: 23
edited November 2017 in ILC (Invasive Lobular Carcinoma)

My MO has informed me this the will NOT be ordering a PET/CT scan for me ever.

I know that most BC patients get these regularly to check for reoccurrence of cancer.

Since my ILC was so hard to detect, his reassurance that he will know if I have metastatic cancer by my reporting to him any new symptoms seems unrealistic. I apparently had ILC for many years before DX.

He claims the stress involved with the testing, as well as false positives and continued exposure to radiation far outweigh its value. I disagree.

Do I have any recourse short of finding a new MO? I have considered asking my surgeon/radiation dr team to intervene. What should I do?

I could just bombard my MO with continuous symptom reporting and see how he handles all that, but that seems juvenile. Unfortunately, I have always seemed to have a high tolerance for pain and discomfort so that does not work in my favor.

Right now I have pain in my back. Could be from the nerve root involvement ( ILC fingers wrapped around my nerve root, artery and vein under my collarbone and surgeon had to remove scar tissue from that area after chemo killed all the cancer. It was very invasive surgery and of course the nerve needs time to regenerate. ). On the other hand, what if I have cancer in my back? How would anyone know without a PET/CT or an MRI?

Has anyone else experienced the NO PET/CT way of treating a supposedly cured ILC patient?

Thanks for reading my questions and thanks for any response you may have for me. Michele

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  • MTwoman
    MTwoman Member Posts: 2,704
    edited November 2017

    mmb, the "claims" that he makes about the exposure to radiation should be taken seriously. In very simplified terms, a chest CT represents 2 years worth of background radiation exposure, where as a mammo represents 7 weeks worth. To regularly receive them, you'd be putting yourself at increased risk for other types of cancer.

    https://www.radiologyinfo.org/en/info.cfm?pg=safety-xray

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  • reflect
    reflect Member Posts: 576
    edited November 2017

    Hi mmb, My MO does not order any scans either, will do so only if indicated by symptoms. This is standard of care I believe. She mentioned all the things your doc did, but added that frequently docs who do regular scans ....are the owners of scanning equipment (!)

    The (uncomfortable) bottom line is that there are no better outcomes obtained by routine scanning, so no point.

    Wishing you health!

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  • beach2beach
    beach2beach Member Posts: 996
    edited November 2017

    I am still in the beginnings of this journey, going for 3month follow up with my Oncologist in December. I will ask her where she stands on this issue. From most of what I have read, usually they base it on symptoms.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited November 2017

    “I know that most BC patients get these regularly to check for reoccurrence of cancer.“

    Most lower stage bc patients do not get regular scans! You'd be exposing yourself to a great deal of radiation if you did. Even at stage IV, we've cut back on scans, 2x a year, for that very reason and my mo would really like to go for annual scans (unless I have new symptoms). Scans are not harmless and I can personally attest to the stress they create

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2017

    I'm at higher risk for recurrence and I've only had one PET scan, pre-chemo and radiation, as part of the overall initial dx before I began active treatment. My MO has never ordered another one. I disagree that "most BC patients" continue to receive PET scans; at least those that aren't Stage IV.

    I do, however, get regular blood work where she looks for particular markers and other signs that something might be happening that deserves a closer look. I've also had MRIs pre and post BMX, etc.

    Claire in AZ

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  • mmbNaplesFL
    mmbNaplesFL Member Posts: 23
    edited November 2017

    Thanks everyone for your responses. I really appreciate that you all took the time to interact with me.

    I am Stage III-b or c, no one ever really was able to confirm which one for me. I gave up since it didn't seem to really matter that much. From the beginning, my MO has repeatedly iterated that he fully believes that I will bloom to metastatic cancer and be Stage IV. He then assures me that many women continue to live a 'fairly' long life with cancer and I will join their ranks. I was two months away from being 65 when dx so the next five years may be all I have. My mom was dx with breast cancer at 70 and it eventually went to her bones and then her stomach. The stress of no way to easily see a new cancer as opposed to the stress of a scan seems not comparable to me.

    Since I was already Stage III+ at dx, my faith in being able to report symptoms that my MO can diagnose is fairly low at this point. I already had a path report that confirmed breast cancer when I was sent for a mamo/ultrasound one week later. Those tests did NOT show any cancer. I had 30 years of mammograms that looked like the one where we knew I had cancer. My radiologist was stunned and we both cried. My blood tests showed no markers so that is not something that will be helpful to me.

    It is hard for me to wrap my head around those who say discovering it sooner rather than later will not change the outcome. Certainly my treatment would have been much better and easier if I had not had such extensive involvement when discovered. My doctors have all surmised that I probably had the cancer for years since ILC is generally a slow growing cancer and it had grown so extensively All of you who had lumpectomies don't seem to understand the severity of getting a bmx and all it entails, including several lymph nodes [approximately 40 for me.]

    My impression that almost everyone gets subsequent PET/CT scans was born out of living at the Hope Lodge in Tampa for the six weeks of my radiation treatment. I became close with many of the other patients [who were being treated at Moffitt, while I was being treated at FL Hospital] and I can say that each one that I knew left there with an appointment set for 90 days later to return for a PET/CT scan. One other patient was getting radiation at a facility in Sarasota, known for treatment of prostate cancer. Believe me when I say we spent much time telling our stories and comparing a lot of the treatments, with only a keen interest and not to attempt to change our treatment.

    I am just very scared and trying to be proactive in my care. I'm now on Femara and a Clinical Trial drug [Everolimus] that hopefully will boost the effects of the Femara. I am also taking Metformin [ I do not have diabetes but take it based on the following from this website: http://www.lifeextension.com/Magazine/2001/9/report_metformin/Page-01

    Cancer & cellular immunity

    Metformin has been found to suppress the growth of some tumors and enhance the activity of anti-cancer drugs. By giving the immune system a boost, metformin can improve cellular immunity. It has also been found to reduce the incidence of chemically induced cancer in rats.5,7

    The way metformin improves cellular immunity is linked to its blood sugar lowering effect by improving receptor sensitivity and number. Bacteria, fungi and some viruses tend to feed on sugar. By diminishing their fuel supply, we diminish them. That is why diabetics and other individuals with endocrine abnormalities tend to be more prone to infections.

    I pray for you all and myself and for every woman who is dealing with cancer. I pray that no one will be dx today or ever again. I pray for good outcomes and easy treatments. I don't feel sorry for myself and more than I feel sorry for all of us. I am living my life and intent on recovering and hope that I have a few more good years at least. I am grateful for a very loving and supportive family and all the blessings I have.

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  • Sam2U
    Sam2U Member Posts: 233
    edited November 2017

    Just curious mmbNaplesFL ... when you say your "blood tests showed no markers, so marker tests wouldn't be useful", when did they first test for the antigens in your blood? Before/after surgery/chemo?

    I too am Stage 3 with a large tumor removed and positive nodes. My mo only looks at the 27/29 markers, I have never had a pet scan and they didn't check the markers before treatment so my only basis for comparison is after treatment.

    Thanks!

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited November 2017

    Mmb, your doomsday oncologist is out of line saying you will for sure become stage iv. Anyway, I'd like to suggest that careful physical exams and thorough Interviews can go a long way. If my first onc had ever bothered to press on my abdomen the liver mets would have been discovered much sooner. Even IF finding mets sooner doesn't affect survival, it can affect quality of life.

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  • mmbNaplesFL
    mmbNaplesFL Member Posts: 23
    edited November 2017

    @Sam2—he tested before any treatment had started.

    I then had 5 months of chemo treatment, surgery and then radiation.

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  • mmbNaplesFL
    mmbNaplesFL Member Posts: 23
    edited November 2017

    Shetland Pony — so sorry to hear about your experience and yes, I am trying so hard to be upbeat but obivously there is s lot for us to learn and the stakes are so high. I don’t want to become obsessed with my condition but it is hard to know what do do beyond reading of others experiences and doing a little research on my own.

    I have thought about getting another MO but frankly wouldn’t know how to start on that. I do feel like minehas gotten me through a lot and found me a fabulous surgeon when others felt I was inoperable so I’m not sure that is a viable option.

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited November 2017

    Naples - If it would relieve a lot of your anxiety, maybe you should look into another MO. I'm a big proponent of second opinions - even if they come to the same plan, it's worthwhile to hear it from different sources. Maybe someone through Moffet?


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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited November 2017

    Mmb, it seems like you need to figure out how to have more peace of mind about how you are being followed, so you can set it aside more and enjoy life right now. You had Taxol and now letrozole, which are both really effective drugs; I would take some comfort in that. I get the high stakes thing and how it makes every decision seem so big. Maybe if you make a written follow-up plan and discuss the reasoning behind it with your onc, that would help? I don't want you to lose today worrying about tomorrow. Make the plan, put it on your calender, then go and think about something else.

    Here are the NCCN Guidelines from 2015 (Sorry I don't have quick access to 2017 just now) for surveillance after treatment for early stage invasive breast cancer:

    • History and physical exam 1–4 times per year as clinically appropriate for 5 y, then
    annually.
    • Educate, monitor, and refer for lymphedema management
    • Mammography every 12 mo
    • In the absence of clinical signs and symptoms suggestive of recurrent disease, there is
    no indication for laboratory or imaging studies for metastases screening
    • Women on tamoxifen: annual gynecologic assessment every 12 mo if uterus present
    • Women on an aromatase inhibitor or who experience ovarian failure secondary
    to treatment should have monitoring of bone health with a bone mineral density
    determination at baseline and periodically thereafter oo
    • Assess and encourage adherence to adjuvant endocrine therapy
    • Evidence suggests that active lifestyle and achieving and maintaining an ideal body
    weight (20–25 BMI) may lead to optimal breast cancer outcomes

    So no imaging recommended. Even so, I and many oncologists think it is fine to do a baseline bone scan or other scan. It seems completely reasonable for someone with stage III in my opinion. If you have any symptoms, that may provide reason to order one. Would your onc go along with doing one baseline scan for your peace of mind? Whatever modality saw the breast tumor seems like a good choice. And as I said before, the physical exam and history should be thorough and not cursory, in order not to miss any symptoms. I don't think it necessarily follows that if the ILC breast tumor was hard to detect, that you would not notice symptoms elsewhere.

    Also, again, while not listed above, occasional labs are not that expensive or invasive, and any doctor can order tumor markers and a CMP, which will include liver tests etc. What marker did your onc check before treatment?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2017

    Naples, I have an MO that gives me Prolia injections every 6 months as both a way to protect me from some mild osteopenia because of 6 years of AIs, and to attempt to protect my bones from any invasion of cancer cells because I, like you, am also higher risk (6/11 nodes +, etc blah blah). You should look into perhaps getting those twice yearly injections.

    I agree that BMI apparently makes somewhat of a difference. I wonder how your MO reasoned out that you will become Stage IV; it seems presumptuous at this point--crystal ball-like, unprofessional, and certainly can't help your outlook on life. But if you can overlook it and feel confident your MO is giving you the right care, that is all that matters.

    Here's a link to the very large "Nurses Study" about regular moderate exercise and protection against recurrence esp. for those of us that are ER+/PR+. You might find it interesting.

    https://jamanetwork.com/journals/jama/fullarticle/200955

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