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Mixed Messages from the Medical Community

Maybe it is just me, but I feel there are so many mixed messages from the medical community that it is no wonder patients are confused.

Example: After having breast cancer three times, I am now experiencing bone pain. I finally was convinced by many here, including the moderators, to see my MO sooner than scheduled. I have an appointment this Thursday.

I had a bone scan 5 years ago, prior to my second Dx but I had so many tests I forgot how that one was done. I assumed my MO would order another bone scan. I decided to look up information on bone scans on BCO. There is good information about the test and I was thinking this is exactly what I need, until I read the part that said: "The exam is expensive and time consuming, and studies have shown that it won't improve your quality of life or length of survival."

When this phrase is used, and I have seen it used for many other tests, procedures, and treatments, not only by BCO but also other highly regarded medical institutions, I get totally confused!

I get it that the test itself won't change what will be, but won't the results make a difference in quality of life and survival? If not, why are we even having these tests? It certainly isn't just so we can "feel better!" Peace of mind is certainly something we seek, but not the main reason for doing any test or taking any drug. I think it is possible that I have bone metastasis, and I want to KNOW if I have it or not! Not for peace of mind, but if I have bone mets, then I can be proactive and take medications to hopefully extend my life! Or, is there a disclaimer on those too???

Now I can't get that phrase out of my mind and I feel foolish for even hoping my MO orders it. In fact, I don't want a bone scan and I am rethinking if it is wise to keep my MO appointment.

Once again I feel like walking away from all things breast cancer!

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,742
    edited July 2023

    What type of bone scan did you have and what type is your doctor ordering? Nuclear or DEXA?

  • mavericksmom
    mavericksmom Member Posts: 1,110
    edited July 2023

    I had a Nuclear Scan 5 years ago, different hospital, different team. I don't know what my current MO will order, my appointment is on Thursday. I was just reading up on the test because I didn't have symptoms five years ago, I do now. I had so many tests 5 years ago, I couldn't remember exactly what was involved with the nuclear bone scan.

    I just don't understand why they write that the test won't extend one's life or quality of life. Isn't that a no-brainer? No test will, but the information from the test should if the person is positive for metastasis. If not, then why bother??? I find it confusing, and it frustrates me.

    I had a Dexa scan before I had symptoms, but that is for density, for AI, not to detect bone metastasis.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,742

    Here is a web site that says a nuclear bone scan can “see” cancer. The idea of extending someone’s life by discovering mets early is a bit slippery. There have been numerous articles stating that finding mets early only means you know you have mets for a longer period of time. I am sorry but I don’t have a citation for this right now. Quality of life really shouldn’t have anything to do with it since symptoms that impact QOL are medically managed though a scan might confirm the reason one is experiencing diminished QOL. I, quite literally, have a single bone met that was discovered by accident. It has never been symptomatic. One school of thought is that had it not been for that accidental discovery, I might not have known about it for many years and in the end, the outcome will be the same. It’s been 12 years since that discovery so who knows🤷🏻‍♀️. The reality is that there are still many unknowns with bc and too many individual variations. This is a far from perfect situation but it’s our current reality. I wish as much as you for more definitive tests and treatments as well as clear answers to questions but this disease but we’re not there yet.

    https://www.cancer.net/navigating-cancer-care/diagnosing-cancer/tests-and-procedures/bone-scan

  • mavericksmom
    mavericksmom Member Posts: 1,110

    Thanks exbrnexgrl, I really do appreciate your comments.

    If what you say is true, and now I suspect it is, it would seem better not to have any follow up appointments, and to let nature take it's course, so to speak. I am seriously thinking of stopping the Letrozole and canceling all my breast cancer related appointments.

    I feel like such a fool! I thought I was being pro-active by moving up my MO appointment. I don't know why so many on BCO including the mods, said I should see my MO a.s.a.p.???? The only point of having my MO appointment moved up was to find out if the cause of my pain is from bone mets. I found a small lump on my chest wall, but my BS dismissed my concern and told me to see my MO. Now that I know bone mets tests are worthless, I would refuse testing anyway. No point, right? Thus, no point in keeping the appointment.

    Why do they even mention bone metastasis????? Why doesn't the medical community just leave well enough alone? Why do women take those horrible drugs for bone mets if it isn't going to do anything for them? Why don't they just face the fact that nothing will prolong their life or give them a better QOL?

    It sounds like breast cancer is just another money-making industry! Why have all the stress of follow up visits, of a stupid survivorship plan, or take medications that have more side effects than help, if not to help have a better QOL or extend one's life? Why do that? For doctors and drug companies to make money?

    I can't believe they make people have expensive bone scans that have no impact on their QOL or extend their lives! Talk about scamming people!

    Is the same true for mets to liver, brain, lung, etc? Is all testing for metastasis a scam?

    Right now I don't want to think about anything to do with breast cancer! I am going to pretend I never had it, heck, I might as well pretend my boobs are real while I am at!

  • newfmamainoregon
    newfmamainoregon Member Posts: 5

    mavericksmom, I totally understand what you means. A month ago I found a lump on my chest wall, close to armpit so ultrasound, biopsy confirmed ILC which I had 12 years ago (BMX). Surgeon wanted to have CT & bone scan. Onc said PET, so he won. It of course didn’t even pick up the tumor, same as the PET 12 years ago. Why even do the tests??? Frustrating.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,742

    I think I may not have expressed myself well when I mentioned early mets detection simply means you know about it earlier but the outcome doesn’t change. This is NOT a proven fact but is one theory. I certainly wouldn’t want anyone to interpret this as simply do nothing and wait to die.
    I have lived with bone mets for 12 progression free years. I get regular scans because if there is progression then we change the course of treatment and hope to stave off future progression. Stage IV is not curable. Most of us are looking to prolong life, with decent quality, for as long as possible. So many wonderful things have happened to me over these past 12 years that make each scan and every tablet I swallow worth it.
    None of us with stage IV are under any illusions about the reality of mbc but most of us hope to find a balance between treatments and QOL. A few choose to do nothing and let nature take its course but most choose to have as much time as is doable for them. Ultimately we all make our own choices.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,742

    newfmamainoregon,

    Please remember that no type of imaging is perfect and you know that ILC can be sneaky. I know it’s frustrating but I hope folks won’t throw in the towel because imaging is not perfect and bc is a complex disease with lots of things still unknown. The imaging that we have today is better than in the past and continues to improve but of course, we can only work with what exists at present. The same is true of drugs .Still not perfect but when I received my de novo stage IV diagnosis 12 years ago (Yup, 12 years) Ibrance, Verzenio, and quite a few others, had not even been approved for use. Yes, far from perfect and often frustrating but I have seen some remarkable positive changes in my years of living with mbc.

  • moderators
    moderators Posts: 7,888
    edited July 2023

    @mavericksmom we apologize for any confusion our support may have caused; While no imaging is perfect (as mentioned by others), we typically suggest to people to follow up on changes to their body and/or ongoing pain in order to figure out the cause so that it can be addressed. We are also passing the article along to our editorial team to provide more context to that article.

  • gailmary
    gailmary Member Posts: 426

    Yeah, I have a hard time with that statement that it won't extend one's life. BS. I also have just 1 bone met. The pain practically paralyzed me in 2017. Close to breaking. Not treat it? Sounds criminal to me. We all die. With all the progress made with treatments everyone will tell you patients are living longer. That's the danger of old news from Dr. Google.

  • jhl
    jhl Member Posts: 174

    Mavericksmom,

    I can hear the frustration in your text. Whatever that article was on BCO was either wrong or written in poor context. I'd urge you to read this article from the NIH which was published in Current Oncology in Oct 2021: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8482272/It lists several reasons to pursue diagnosis of bone mets: to lessen risk of fracture or damage to the spine & spinal cord, to decrease pain, to avoid the risk of hypercalcemia, etc. Many of those could severely affect your prognosis & all of them affect your quality of life.

    One of the issues with researching is the need to evaluate the veracity and authenticity of the authors. A primary way is to look where the information was published, when and by whom. There is an entire graduate course on evaluating literature which is far beyond this platform. However, if the article you are reading does not have a citation to primary literature, it is suspect.

    I'd encourage you to keep your appointment, but I don't think you should demand a bone scan. Ask him/her what method might be best for your situation because there are lots of changes in imaging. Confess you are afraid of the outcome and ask for guidance when presented with symptoms. This kind of anxiety is common with all of us.

    I wish you well.

  • mavericksmom
    mavericksmom Member Posts: 1,110

    This is the link to the BCO article, last updated July 27, 2022. https://www.breastcancer.org/screening-testing/bone-scans

    How ironic that the date of my MO appointment is tomorrow, July 27, 2023?

    Thanks to all for sharing. I am keeping my appointment, but plan to limit my BCO reading/commenting to non-cancer forums moving forward. I have connected with so many wonderful people here on BCO I don't want to leave those forums, but right now I can't think about breast cancer or the possibility of metastasis. My lack of sleep due to bone pain is not helping with my mental state. Today when I click off of this page, I plan to focus on all things NOT related to breast cancer.

    I have an index card on which I had previously written all of my concerns to share with my MO. I will take that with me, share the information with my MO, and let him decide what I should do moving forward. I am NOT mentioning the BCO article to him. I will simply share my concerns and answer any questions he asks me. I trust him, which is something I can only say about a few of my doctors, my BS not being one of them.

    Thanks again to everyone who commented and shared their thoughts!

    Mods, please consider removing that phrase from your article. While it may have some truth to it, if it almost stopped me from seeing my doctor, who else thought the same as I did and actually did cancel their appointments? I came so very close to NOT writing this and just giving up! Without the input from others in response to my post, I definitely would have stopped taking Letrozole and cancelled all my breast cancer related appointments.

  • kaynotrealname
    kaynotrealname Member Posts: 366
    edited July 2023

    If I may make a suggestion the full line is this - "Typically there is no need to have yearly follow-up bone scans if you aren’t experiencing any unusual symptoms, such as persistent pain. The exam is expensive and time-consuming, and studies have shown that it won’t improve your quality of life or length of survival."

    Maybe change it to this - "Typically there is no need to have yearly follow-up bone scans if you aren’t experiencing any unusual symptoms, such as persistent pain because the exam is expensive and time-consuming, and studies have shown that it won’t improve your quality of life or length of survival."

    That "because" might signal to people that the sentence means that bone scans aren't meant to be used as a routine procedure for NED patients without physical symptoms.


  • lw422
    lw422 Member Posts: 1,399
    edited July 2023

    I agree that simply having a diagnostic scan in itself does not improve QoL or extend survival, but a scan that finds a metastasis certainly can. Once the met is found it can usually be treated, which certainly could potentially improve survival time. Treatment as a result of the scan can also improve QoL if pain or other symptoms are reduced.

    No article on this website or any other would keep me from seeing my doctor if I were having physical symptoms as a cancer survivor. Of course we all have to decide these things for ourselves. Some people with health/cancer anxiety tax the system by demanding scans that aren't medically necessary… but that's another topic. (And that certainly isn't the case with you, MM.)

    Good luck and I hope your doctor can find what is causing your pain and help you. You are having upsetting symptoms and I'm glad you're going to have it checked. Let us know what you find out. Hugs.

  • sunnidays
    sunnidays Member Posts: 152

    While this site is excellent, always check the information with your oncology team. I am a big advocate of asking my oncologist for trusted sources of information.

    I had delayed diagnoses partly became of medical anxiety and patient always looking for scans despite not needing them. What happened was my local doctor had a patient who had cancer as a child and as an adult was always at the doctor looking for scans convinced he had cancer again. The local doctor should have sent me back to the oncologist sooner but another patient constantly asking for scans seem to have affected his ability to make a logical decision. I often wonder for those who have medical anxiety how long the relief after the scan persists.

  • moderators
    moderators Posts: 7,888

    Hi again @mavericksmom. We wanted to thank you again for alerting us to this page. We did take it to our editorial team, who rewrote the entire page to make it a little more understandable and less confusing. You can see the new page here: https://www.breastcancer.org/screening-testing/bone-scans

    We hope this helps!

    —The Mods

  • shanagirl
    shanagirl Member Posts: 335

    @mavericksmom I am glad that I have continued with my onc every 6 mths for followups. Had I not. He would not have sent my bloodwork was suddenly showing traveling tumor cells, hence liquid biopsy and Nuclear bone Pet/CT & MRI. They all showed new bone Mets throughout my spine ribs sternum, sacrum, ribs,. These scans and liquid biopsy resulted in. My Onc Inowing what “cocktail” of treatment drugs would fight progression. Since I’ve been on them my quality of life really sucks now, but I am also hopeful that my bone mets were found and treated early enough so they would not progress unnoticed to other organs. I am going for nuclear bone scan CT/Pet this week and next because he wants to see how the treatment is working. Pam I hope you get answers from your MO tomorrow. By the way my scan is not tomorrow but Thursday. I will be in your pocket tomorrow though.🥰

  • gm6789
    gm6789 Member Posts: 6

    Hi all. I'm new here and my heart goes out to each person on here and their respective families.

    Sorry if this is a stupid q, but how should we think about the radiation from scans? I know technology is getting better to reduce the radiation per scan, but can radiation backfire and cause more problems if you get too much? Or is the benefit worth the incremental risk?

    Just trying to understand the downside of scans beyond the anxiety/potential overtesting (which is real).

    Much love to all.

  • kaynotrealname
    kaynotrealname Member Posts: 366

    It's not a stupid question! It's risks versus rewards. I look at is this way. If something is bothering me, I need to figure out what it is. If I'm comfortable then leave me alone.

  • mavericksmom
    mavericksmom Member Posts: 1,110

    I don't know how to respond, but I try to weigh the importance of each scan and accept the radiation risk. We are exposed daily to radiation, cell phones, computers, microwaves, TV's. Not to make light of the fact that radiation is not good for anyone, but it isn't something to worry about for most of us.

    That said, and not to scare you, my sister was diagnosed with breast cancer and non-Hodgkins Lymphoma at the same time. Four lymph nodes were removed, one was positive for breast cancer but all four were positive for the NHL. Because of this unusual circumstance, she was exposed to constant scans for years. She was treated at MD Anderson in Houston, TX, the number one cancer hospital in the US. Good news was her cancers were in remission, bad news, she got a third cancer, MDS, from the radiation from all the scans and treatments. MDS took her life at age 66. Because I was burned so severely by my radiation treatments, her doctors said I should be mindful of getting MDS too. Again, not the norm.

    No one can know for sure how our bodies will react. Most scans use very little radiation and radiation treatments are supposed to be targeted to certain areas.

  • gailmary
    gailmary Member Posts: 426

    KAY, Exposure to radiation from scans is becoming more concerning as more stage 4 women are living longer. Mention your concern to your doctor. Possibly during times when the cancer is stable he will spread out the frequency a bit less often. My cancer is a slow grade 1. Right now we're scanning every 6 months unless there is a new pain, lump or rise in tumor markers.

  • claireinaz
    claireinaz Member Posts: 679

    I know this isn't much of an active thread right now, but I did a lot of research on CT scans with and without contrast. CT with contrast can be as much as 20X more radiation exposure than we get from the natural environment in a year. I always ask to see what other scans I can have other than CTs. I've had so many, and I had rad tx to my right breast, and I'm a Downwinder, meaning I was exposed to above-ground nuclear fallout in 1962 as a toddler. I've been radiated enough, and will only agree to any CT after I have a serious conversation with the ordering physician. Sometimes I think they DON'T think about what we'ver already been through. Case in point: I've had several CTs of abdomen/pelvis in the last 20 months or so. When Mayo wanted to scan my bladder as a workup for bladder wall thickening, I asked them what else they could do instead. The doc agreed to do an MRI first. If there's a need after that, then we'd have another conversation about it.

    Claire in AZ