Kicked out of BC Clinic because I hit 10 years

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Meggy
Meggy Member Posts: 530

I'm frantic...my BC clinic is literally telling me that because I am 10 years post treatment, I can't come back. I have been feeling overwhelming fatigue for months and I had an appointment that I waited months for but my oncologist retired without warning and so they simply cancelled my appointment. Its a huge clinic. Now I'm told I can't come back. I am scared about what might be going on with my health.

Is anyone on here still allowed to go to your oncologist even though you are 10 or more years out? I'm truly outraged. They are even referring to me as a "new patient" even though I did all my treatment there and have been a patient there ever since.

I cried all night after I heard their message. I keep telling them that I feel all consuming fatigue and they don't even respond to my statements.

Meggy


Comments

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited April 2019

    Can you go to your primary care doctor first, then get a new referral to the breast center? Or it may be something else going on that would require different screenings and specialists.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited April 2019

    Can you contact your old MO and ask him/her to refer you to a new MO?

  • Flynn
    Flynn Member Posts: 307
    edited April 2019

    I’m sorry that you’re so stressed out. Are you under the care of a primary care dr? It might be reasonable to start there with basic labs, etc. Asking for a new MO may also work but could prove more challenging after this length of time. Good luck and KUP.

  • WC3
    WC3 Member Posts: 1,540
    edited April 2019

    Meggy:

    That sounds very strange and that they just cancelled your apoointment like that might constitute patient abandonment and violate patient abandonment laws. I would take this up with the center's office manager or director.

  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited April 2019

    Wow! Asking your primary doc for a new referral I would think would not be out of line at this point. I had my original MO retire and before he did I was told he was going to and that he was referring to another MO in the same practice. They should transfer the records to another doc at no charge I would imagine if they ask for them. If you have ability print out information from their web site for your new MO you might want to get that done as well so you have them. It probably will not include all the doc notes but at least the basics for your new practice. Best of luck to you.

  • Trishyla
    Trishyla Member Posts: 1,005
    edited April 2019

    It actually doesn't seem strange at all. I'm surprised they kept her as long as they did. According to her stats, she's triple negative. You are considered "cured" after five years disease free. Your recurrence rate basically drops to exactly the same as any other woman your age who has not had breast cancer. So any cancer would be considered a new primary.

    I agree with Alice. You should go to your primary care doctor for tests. It's much more likely to be a thyroid issue than your triple negative cancer coming back. You really should consider yourself cured of the original cancer.

    Best wishes.

    Trish


  • Meggy
    Meggy Member Posts: 530
    edited April 2019

    Trishyla, this was posted in a triple negative thread, so yes, I'm triple negative. You are absolutely wrong about the "cure" of triple negatives. I'm guessing your not an expert in Triple Negatives. After 5 years we go down to a lower risk (possibly around the same risk rate as ER/PR positive patients, but this is not actually known. We are a relatively newly identified form of breast cancer and there aren't good studies to tell us our risks after 5 years.)

    Here's a portion of an article:

    Long-term survival outcomes of triple-receptor negative breast cancer ...

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5765226/

    by SM Reddy - ‎2018 - ‎Cited by 3 - ‎Related articlesBackground: We counsel our triple-negative breast cancer (TNBC) patients that the risk of recurrence is highest in the first 5 years after diagnosis. However, there are limited data with extended follow-up on the frequency, characteristics, and predictors of late events.

    Thisyla, please change your post. I don't want any of my triple negative sisters to read it and then wrongly think they are "cured" at the five year point. That is not the case. That claim could put someone at risk.

  • Meggy
    Meggy Member Posts: 530
    edited April 2019

    Unfortunately, my insurance only covers the clinics at this very important institution if I am an existing patient. If I do get "referred in" as a new patient, I have no insurance coverage.

  • HappyAnyway
    HappyAnyway Member Posts: 446
    edited April 2019

    Meggy, I just want to say that I'm sorry that you're having a hard time. I don't understand why they allowed an appointment to be made to begin with if they said that you are no longer a patient. Sometimes I feel like the healthcare industry is not patient oriented at all. I think I would contact my primary doctors office, too. Let them help you.

    Praying for you.

    Edited to add that I see the original appointment was scheduled with your doctor that retired. I agree, from my experience, that the retiring physician usually refers a patient to another doctor in that group.

  • Meggy
    Meggy Member Posts: 530
    edited April 2019

    Trishyla, your post makes untrue statements about Triple Negative BC. We are not "cured" at the 5 year point. Your statement that any new cancer would be considered a "new primary" is also not true. When our cancer returns, it's stage 4 TNBC. Your statements are not based on science or any sort of studies. They could mislead someone with TNBC and put one of our TN sisters at risk. Please delete your post.

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

    Meggy, perhaps you want to contact the mods on this one.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited April 2019

    Meggy there may be a differentiation between people who get a strong response to chemo, and those who don't. Also what stage you are when treated. Among people w pCR, very few (almost zero) have recurrences after 5 years. Pretty much the same risk as general population. My MO told me he'd never seen a recurrence of TNBC beyond 3 years out.

    I sympathize w not wanting to leave your med facility and hope you can work up the chain of command till you find someone sympathetic to keeping you there...

  • wrenn
    wrenn Member Posts: 2,707
    edited April 2019

    My oncologist discharges patients 2 years after the end of treatment. I was told to go to my primary care person with any concerns. That person can refer you back to the same oncologist or a different one if there is a concern that the cancer has returned but the primary care person refers for any procedures to try to find out what the problem is. Any CT Scans or blood work I have done when I worry is done by the primary. It is only referred after investigations point to it being cancer.

  • Moderators
    Moderators Member Posts: 25,912
    edited April 2019

    Dear Members,

    We have been following this discussion and we have asked some of our professional advisors to offer guidance around some of the facts mentioned. Namely we want to fact check the following:

    1. Whether or not a TNBC recurrence is automatically stage IV
    2. Whether any new TNBC tumor (recurrence or not) would be considered a new primary
    3. How is breast cancer recurrence risk for TNBC after 5 years and after 10 years compared to average woman's risk
    We are not concerned about who is right or wrong here but thought it would be helpful to consult some of our professional experts so as to have accurate information on this important topic. We will keep you posted as we learn more.

    The Mods

  • Trishyla
    Trishyla Member Posts: 1,005
    edited April 2019

    Thank you. Moderators. I think this a great topic for further research. We all want to have the best, most up to date information to help guide us in this journey.

    And to the OP, Meggy. I did not mean to offend, only to help. Hope all is well with you.

    Trish

  • TB90
    TB90 Member Posts: 992
    edited April 2019

    I am confused. I am not triple negative, but never heard about any recurrences ever automatically becoming Stage IV. Unless I am missing something, and I often do as of late, I am equally shocked that the mods are even looking into this. I have mixed feelings about being kicked out of cancer care. When I was, twice, only show my BC stats, I have never been so relieved! I hate going there. Canada is diligent about getting patients out asap. But I also understand the feeling of vulnerability, especially if you are not feeling well and strong. My RO assured me that any time I wanted to contact him, I could. He stated that very few patients want to come back unless they absolutely have to. But I did like that connection. Unless he leaves or retires. But I could get referred back by my primary care physician anytime. Perhaps in the States it is not so easy or perhaps insurance is affected. But after 10 years, although we are never cured, you have done so well! They may be suggesting that your odds now of recurring as so low, that this level of monitoring is no longer necessary. But I hope you can find a level of care that is caring and reassuring. And has the expertise that is needed. Wish we could just go to the zoo instead and release that monkey that we all have on our back. Take care

  • NancyHB
    NancyHB Member Posts: 1,512
    edited April 2019

    Meggy - I’m sorry you’ve been so discourteously kicked to the curb by your MO. I know after my first dx I was switched to a “survivorship” program after the first two years which was intended to follow me for an additional 5, then they’d turn me loose with no further follow-up. It was a scary prospect but all along they kept saying if I got to that point with no recurrence my stats would be that of an average woman and there’d be no need to follow me closely. My recurrence sorta blew that out of the water, but anyway...


    I can’t speak to Meggy’s intention but I can say that my MO said frequently that local recurrence was rare, and when he talked about “recurrence” he meant mets, so I can see Meggy’s point about recurrence being stage IV. I had either a local recurrence or a new primary (there is debate between 2 docs and it’s a long story I won’t repeat here) that was TN. I now have mets.

    TN is a particularly nasty and scary beast because we don’t have the safety net of Tamoxifen and AIs, so I feel for you, Meggy. All I know is what I’ve read and been told, and getting to 10 years recurrence-free is something to be celebrated!! You may never feel like you’re past this disease, and you’ll be ever-vigilant about watching for signs of recurrence, but I hope you find some peace, too, in the length of time you’ve been disease-free. You fought really hard through treatment so you can live your life; I hope you can enjoy some peaceful moments after all these years.
  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited April 2019

    TB90-- the difference with TNBC is it is one of the cancers that CAN be cured... and it looks like OP may be one of the cured ones. Yet that can be really frightening to count on, so I can see why it's scary not to be on the followup plan.


  • TB90
    TB90 Member Posts: 992
    edited April 2019

    I think the only way anyone will ever convince anyone with any type of breast cancer that they are cured, is to have a definitive test that states you are cured. Otherwise cured remains in the minds of very few who rely on something else to convince them. That is why everyone feels so damn vulnerable with this disease and the word cured means so little.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited April 2019

    Well the stats on TNBC say it can be cured. With TNBC patents who get a pCR, 90% will not recur. Ever. 90% of pCR achievers will be cured of their cancer. That isn't perfect, because 10% will have a recurrence, but those will happen early in time. Unlike HR+ cancers, which can hibernate lengthy periods and then reemerge 20 years later.

  • Whirlaway
    Whirlaway Member Posts: 64
    edited April 2019

    My MO considers cured at 7 years out and at 5 years out, you are "pretty much home clear". 

    I am not 3 years out yet, still getting MO appt. every 3 months with blood tests and so far had bone scans yearly. Surgeon sees me twice a year and orders mamo, ultrasound and often MRI. 

    Initially, I was in a TN trial and they wanted to follow me for 10 years. I don't think I will ever feel cured, given how healthy and fit I was when I was diagnosed, but NED works for me. Another TN woman was unfortunately diagnosed with Stage IV two months past her 5 year mark. Not sure if she had pCR.

    Meggy, wishing you the best!!

  • Moderators
    Moderators Member Posts: 25,912
    edited April 2019

    Dear Members,

    This is a follow up to our previous post on April 13.

    We have checked in with some of our experts and are offering information that we hope might help with this important and complex discussion. It is important to state at the outset that there are no real absolutes. Every situation is different and the best source of information about one's cancer and cancer treatment is always with one's medical care team.

    Whether or not someone is released from a medical oncology practice after ten consecutive years of being disease-free, regardless of initial diagnosis, is likely dependent on one's health insurance, the particular cancer treatment center, and one's individual disease characteristics. In general we do hear that many people end up returning to the care of their general practitioner or internist after a number of years of being cancer free.

    In looking at the study provided in the topic: (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5765226/), some TNBC recurrences were distant, some were local, and some patients developed a "second primary cancer" but we don't have the characteristics of those tumors in the manuscript - so again the answer would be highly individualized, but "automatically stage IV" appears incorrect.

    Regarding the TNBC late recurrence risk, the study authors concluded:

    "In clinical practice, we generally reassure our [TNBC] patients and their families that the risk of breast cancer recurrence is minimal once they have survived for 5 years without disease. Although this is generally true, we found that 5% of these survivors will have a breast cancer recurrence within the subsequent 10 years. … Overall, this study highlights that although TNBC patients have a lower late event rate than other breast cancer patients, there is still a small subset of patients who experience late recurrence."

    However, comparing this to an average woman's risk wouldn't really work, since we'd be talking about the average woman's risk for a primary breast cancer (12% lifetime if you live beyond age 80) rather than a recurrence – it's not apples to apples, so it would probably be confusing.

    The Mods



  • Meggy
    Meggy Member Posts: 530
    edited April 2019

    I never said all recurrences are "automatically" stage 4. It also needed to be read in context. I was countering the statement that said literally "any cancer [of TN BC after 5 years] would be a new primary." That is clearly not true. I posted that I am deeply tired. I am TN and posted in the TN thread. To someone with TNBC, it is a given that I am worried about mets.

    My Stanford oncologist, who just retired, said that there is no cure date for TNs.

    I've always come on here for support. I've always walked away feeling supported and hopefully giving support. But being told in third person that I was long since cured and that it was surprising that I was allowed an oncologist even before this point made me cry.

    There are TN ladies on this site who have recurred beyond 5 years.....as far away as 10 years and I don't want them to read posts that trivialize our risk of recurrent TN BC. It is a tough diagnosis and the fears and risks of recurrence continue beyond 5 years.

    The reason why I am so adamant about making this point, is that I've spent 10 years posting on this site to help spread the word to my TN sisters about how TNs can lower their risk of recurrence. I don't want my sisters to throw out that information once they hit 5 years and then negatively change their outcome.

    After chemo ends, we get no more treatment (unless we are part of a study). We don't have targeted therapy. But we do have other weapons such as the low fat diet and exercise. These are large study-based conclusions. The low fat diet only lowered the recurrence rate for triple negatives and it lowered it significantly.

    NancyHB sending you a big hug and will be thinking about you. Thank you for your words.




  • TB90
    TB90 Member Posts: 992
    edited April 2019

    Dear Meggy: I am so sorry you experienced this. I once had a thread get away on me and I had to ask the mods to stop it. I was devastated. So many posters lose sight of the original post. It becomes their issues and their agenda. I do not want to diminish your concerns, but women new to this experience just struggle to cope and are not in the best place to put your needs first. We are all in a different place and I have expressed this on other threads, but we are not all able to be supportive yet. Or able to think outside of our own experiences. Self help forums are far from perfect, but like you, I have experienced amazing support and sharing of knowledge. Please do not give up on us. Our intentions are much greater than our personal limitations due to this aweful disease. Would love to be here for you or to stop this thread. Your choice but know we care, even when it dies not always seem that way. Any sorry if I am speaking on herald of others. I really have no right

  • TB90
    TB90 Member Posts: 992
    edited April 2019

    behalf. Damn autocorrect.

  • Kayrem
    Kayrem Member Posts: 164
    edited May 2019

    Hi Meggy - was hard to decide if I should let this thread remain inactive and pm you or if I should reawaken it. I decided that I would post.

    If you can go to a regular doctor and get blood work done that would be a first step. I have also been tired for months. I told my husband that I had not felt so tired since I was on chemo. It is fatigue. Don't know what causing it but I am pretty sure it is not cancer as I just recently (6 months ago) had a CT scan which was all clear.

    My RO discharged me at 5 years (which was 2 years ago) but said if I needed him I could call. Well I needed him last October because my asthma flared and I thought I had lung Mets. I called him on a Wednesday, he had me in on a Friday, bloodwork by Tuesday and CT scan within two weeks. For Canada (specifically Winnipeg) that is incredible timing. He reacted pretty quick and did not ever tell me that I was “cured" after 5 years. He did say my risk was reduced. I guess what I am saying is your diagnosis line and symptoms play a big part in how worried you/I get and how serious they take you. I know why you are worried! We have a similar diagnosis.

    You have been through so much over the years. I do not come back to the boards often but when I do I always look to see how you are doing. When I was first diagnosed You gave me so much hope. You made me feel like I could take some control over a totally uncontrollable situation. I talked about you so much to my husband, my friends, it was like I knew you personally. I even private messaged you once over the years. Your posts got me through a very tough time.

    The whole cured or not cured thing is hogwash. One woman said earlier (years ago) in a different thread that the stats are 100% you will recur or 0%. I thought that was funny/odd at the time but I get it now. You do or you don't.


  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited May 2019

    I had a 1 cm IDC in 2003. Almost 16 years later, I was diagnosed with ILC. Ironically I too had stopped seeing anyone for follow ups years ago and sought help from my PCP for fatigue. He found nothing. This was in the fall of 2018. I saw 4 specialists after I saw my PCP, for various reasons, but told each about my fatigue! I was told by each to exercise more! The last test I had, a diagnostic mammogram, was done in November. (My doctor wrote the script in September!) That lead to a biopsy and diagnosis of ILC. I still don't believe my fatigue was from the cancer, but I feel worse due to treatments, and I struggle with it every day.

    Breast Cancer can't be cured! If you believe that you are living a lie! My doctors in 2003 told me they thought I was cured but were not allowed t say that! I wasn't cured. That said there is a fine balance between being vigilant with follow ups and not living in fear of recurrence. Worry, like anger, robs your life of joy!

    Definitely see a primary care doctor for your fatigue. I think part of the problem with MO's is that most work with patients who have all types of cancer and cancer is so prevalent that they become overwhelmed with patients. The clinic most likely feels that after 10 years their patients with breast cancer can be adequately monitored by PCP's. Most breast cancer patients won't get a recurrence.


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