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When To End Relationship with your Oncologist?

Hello friends. I was diagnosed in 2014 with early stage BC. I had a lumpectomy followed by 6 weeks radiation. I then received tamoxifen for a few years followed by letrozole, for a combined total of 8 years, completing therapy in 2021. I was wondering if I should continue to see my oncologist for annual visits even if I (hopefully) continue to have yearly normal mammograms? Curious what others do. Thank you.

Comments

  • malebreastc
    malebreastc Member Posts: 87
    edited July 2022

    in my opinion everyone needs lifetime monitoring, I don’t want to scare you but I have had a recurrence 17 years after early stage B

  • murfy
    murfy Member Posts: 254
    edited July 2022

    When I finished AIs, my MO and I agreed that my capable internist (who also agreed and was send my files) would handle the totality of my care. If recurrence happens, I'd line up another MO, as my original one didn't like questions or to be handed scientific papers. His loss...

  • ruthbru
    ruthbru Member Posts: 46,718
    edited July 2022

    Some of my friends were 'dismissed' after 5 years. I had annual visits for 10 (I had a super-cautious oncologist). I have an annual mammogram, check-up with my GP, and do monthly self-checks. So far, so good. 🤞

  • lw422
    lw422 Member Posts: 1,375
    edited July 2022

    I'm sure this depends on the kind of BC a person has and the standards of care. Since I had IBC I will see my oncologist for the rest of my life. For two years I'll be checked every three months, then it goes to every 6 months; then annually.

  • gb2115
    gb2115 Member Posts: 551
    edited July 2022

    I'm not sure I would mentally tolerate not being seen, but I did have a recurrence once already at year 4, so...

    I see both MO and breast surgeon. I imagine I'll see both ladies for a long time.

  • jelson
    jelson Member Posts: 622
    edited July 2022

    I was diagnosed with DCIS in 2009, had a lumpectomy, radiation and took tamoxifen for 4.5 years until diagnosed with endometrial cancer. I had stopped seeing my breast surgeon after my post-surgery visit but have continued to see both my medical oncologist and radiation oncologist ever since - now annually. Last year for the first time my RO questioned why he was still seeing me, yet I have another visit scheduled this year! I was switched to a nurse practitioner two years ago at the MO's office. The MO said he wanted to keep me as an active patient just in case - which is both reassuring and scary at the same time.

  • hapa
    hapa Member Posts: 613
    edited July 2022

    I will see my RO for five years unless there is a recurrence. My MO I will see (or one of his NPs or PAs until I’m off all treatment. I’m on AIs for another 1.5 years at least, possibly longer

  • edwards750
    edwards750 Member Posts: 1,568
    edited July 2022

    I disagree we all need lifetime monitoring. I think it depends on the kind of BC you were DX with. I have read the horror stories of BC returning after many, many years (like a poster here) but I don’t believe that’s the norm at all. I have an internist whom I see annually who is perfectly capable of providing advice/referrals if the need arises. Of course I have annual mammograms followed by a visit with my Breast surgeon.

    Diane

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited July 2022

    I would only partially agree with you Diane but then, I am one of the “horror stories" (and not alone here BTW). Here in Canada I was monitored by my MO while on treatment after stage 2 disease. That included five years of Tamoxifen and then three years on an AI. I was also monitored by my RO for the intervening years but that was only because I was part of a clinical trial. I didn’t see my surgeon again after the lumpectomy beyond the initial follow up.

    It depends on the definition of monitored as, once you have been diagnosed, you are at a higher risk of recurrence and therefore the recommendation is for lifetime annual mammograms (as you note). Who does the monitoring is irrelevant in most cases - it can be an oncologist, a general practitioner or an NP. The important thing is that someone is keeping an eye on things. In addition to the type of BC there are also other considerations such as age at initial diagnosis and family history.

  • alicebastable
    alicebastable Member Posts: 1,934
    edited July 2022

    I'm curious who all will turn me loose after next year, when it will be my fifth year. I never saw my RO after radiation was done - they just said to call if any problems showed up. My BS said next year will be my last with her, but to continue my yearly mammograms. I was in an odd situation because I had both breast and kidney cancer at the same time. I'm down to yearly CTs for the kidney, and I think five years is the normal follow-up for that. I had endometrial cancer ten years before the others, and I only saw the gynecology oncologist a few times after surgery because he was a patronizing dick. So now I'm really curious if my MO will turn me loose or if she'll still see me to coordinate it all. My BS joked that some MOs hang on to patients until their schedules can't take it or the patient gets sick of them. I'm not taking an anti-hormonal, so the MO just sees me every six months now - but she had me do a nuclear bone scan a few weeks ago to make sure it's just arthritis that showed up on the recent CT. I have a non-cancer thing (aneurysm) that needs to be watched, plus some small lung nodules, so maybe my MO or PCP will still order annual scans. Guess I'll find out next year!

  • jonib
    jonib Member Posts: 85
    edited July 2022

    I had BC at the end of 2008 and a recurrence in 2016. My original Medical Oncologist saw me every six months. When I had my recurrence, I switched my MO. I just thought I would continue seeing her every six months but now that I hit the 6-year mark, I have been reduced to every year (will be on Arimidex for 10 years). I hope I am not released when I hit the 10 year mark. I get mammos and MRIs yearly and need someone to prescribe the tests and monitor the findings.

  • persistence
    persistence Member Posts: 1

    I had stage 0 cancer and had a lumpectomy and radiation 6 months after that (was that too late I wonder) and was also started on letrozole right after the surgery. My doctors have dropped me as soon as they could though I have so many questions about the side-effects. I have severe joint pains after starting the letrozole and will complete a year jan 2024. I now also need prolia injections for the -4 osteo in my lower spine caused by the same tablets. Though I've been asking for an appointment since the last 6 moths I'm not getting one.I just need to know if I had Stage 0 cancer do I need to continue these tablets which are giving me so much pain?

  • moderators
    moderators Posts: 7,685

    @persistence - Hello and welcome!

    We appreciate you sharing your journey with us. It's understandable that you have questions and concerns about the side effects of your treatment. Considering the difficulty you're having talking to your medical team, the challenges you're facing with severe joint pains, and the impact on your life, it might be worth seeking a second opinion. Until other members respond with their experience and support, here is more info from our main site on Getting a Second Opinion, including why, where, and when to get them, and what to expect.

    Hope this helps!

    Warm wishes,

    From the Mods

  • ruthbru
    ruthbru Member Posts: 46,718

    Persistence, I would for sure get a second opinion. With Stage O & all the side effects you are having, you really need to have someone who looks at the whole picture. A different doctor might suggest that you switch to Tamoxifen (which isn't so hard on your bones) or just quit.