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Anyone Seeing Oncologist After 10 Years NED?

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shelly56
shelly56 Member Posts: 142

Thought of this a lot, since I'm now 11 years out. Do any of you still see your oncologist and do bloodwork and/or tumor marker testing? Do you base it on being on or off of an AI? I plan on staying with Femara as long as insurance will cover it --barring no ill effects other than bone loss. Also I had been getting yearly lung scans for a 2 cm mass/nodule due to radiation. Does anyone have similar lung issue and what does your onc recommend after 10 years?

Shelly

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  • sbelizabeth
    sbelizabeth Member Posts: 956
    edited February 2020
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    I've been on letrozole almost eight years and I'll definitely go to ten years. My onc kinda wants me to stop at ten, since my bones are beginning to show effects and it's caused my cholesterol to skyrocket. So now I'm on a statin, which will probably kick my already-borderline blood glucose further toward diabetes. Thank you breast cancer, for the handful of pills I take every day to counteract the effects of the pill meant to save my life.

    It scares me to think of stopping at ten years, though, with so many recurrences later than that. Given the choice between porous bones+high cholesterol+high blood glucose and cancer recurrence, I'll take the former.

    My onc stopped drawing tumor markers just this year. I've been stable for a long time, and he thinks it's a waste of time and money at this point. He also said it'd be ok to see him just once a year, instead of twice.

    No lung issues, though. It's amazing, since they really cooked me with radiation.

  • sugarplum
    sugarplum Member Posts: 72
    edited February 2020
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    Hi Shelly (whom I suspect from your screen name was born the same year as me!)...I am almost 14 years out and just had my annual oncology appointment yesterday. I am still on Arimidex and he has graciously been renewing my prescriptions even though he admits he "has no data" beyond the 10-year mark. I just use it as a security blanket; luckily my bone loss has finally stabilized (I did 6 years of Reclast and still take copious daily helpings of calcium and Vitamin D). And I, too, need followups with a 2nd specialist - but in my case it's a cardiologist (heart damage from chemo). My onc has never done tumor markers and in fact has stopped doing any blood work at all - just checks the lymph nodes in my neck & listens to my breathing.

    All in all, I somehow feel safer just having an oncologist look me over once a year.

    Best to you...Julie

  • jrnj
    jrnj Member Posts: 407
    edited February 2020
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    sbelizabeth, taking statins and lowering cholesterol can also lower blood sugar/A1c as cholesterol and high blood sugar are linked. That is what happened to me.

  • cowgirl13
    cowgirl13 Member Posts: 778
    edited February 2020
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    I'm going on 11 years out and still see my oncologist. I am no longer on arimidex, do not have any blood work and see him every 6 months. He is so kind to let me have visits every 6 months.

  • kim40
    kim40 Member Posts: 125
    edited February 2020
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    I am 11 years out. I haven’t seen my oncologist since I hit the 5 year mark and I haven’t been taking any meds since 5 years Also. My oncologist stopped my Femara at 5 years cause he said he didn’t see the benefit after 5 years. I fought for 10 but lost the battle.

  • karen1956
    karen1956 Member Posts: 4,536
    edited February 2020
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    My oncologist still sees me every 6 months - just marked 14 years

  • tmh0921
    tmh0921 Member Posts: 519
    edited February 2020
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    I’ve been seeing my oncologist for 20 years, in fact my original oncologist retired just last year and I transferred to another doctor in the practice for my new diagnosis.

    Tracy

  • shelly56
    shelly56 Member Posts: 142
    edited March 2020
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    Sbelizabeth: I get the fear you must have with stopping an AI at 10 years. I have been seeing a CNP instead of certified oncologist for about 3 years now. The last visit was last month after my original posting --and the CNP said there is no data to justify a benefit of Femara past 10 years. In fact she pointed out the bad side effects such as bone fractures (already broke my leg 2 years ago despite taking extra vitamin D & calcium daily) and also the high cholesterol issue. I have a strong family history of BC so I asked is there any data about people such as myself and the chances of recurrence if I stopped the Femara. She said she wasn't aware of any such data.

    Julie: Congrats on 14 years NED!! Hope your heart issues eventually resolve. Is there permanent functional damage from chemo and are you on any heart medications? I have seen the CNP for the last 3 years and each year I do bloodwork that includes the CA27-29 tumor marker test. I know people with thinning bones try Boniva or Reclast but I'd rather not after reading some of the side effects. In regard to the Tamox & Femara I took for 11 years, I noticed it made my heart work harder and my BP was 10 points+ above the normal. Yes we are truly BC sisters if you were born in 1956!

    All the best to you!

    Kim: You and I were diagnosed same month and year! Stay strong!!

    Shelly



  • sugarplum
    sugarplum Member Posts: 72
    edited March 2020
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    Shelly - yes, I do have permanent functional heart damage from the chemo (non-ischemic dilated cardiomyopathy, to be precise). In fact, 2 years ago my ejection fraction was down to 20% (before chemo it was between 50-55% which is close to normal). I take Carvedilol twice a day and Lisinopril once a day, and in August of 2018 they put in a defibrillator which will shock my heart if it gets to 220 BPM. They can't increase my dosages due to my low blood pressure, so I'm kind of stuck where I am for now (although my EF had improved to 40-45% as of December). I'm especially worried about getting COVID-19, being 64 years old with a heart condition and living in Washington state, but at least my office has closed down now so I'll be working from home for the forseeable future.

    Anyway - it's always good to see you, my fellow baby-boomer!

    Julie


  • wallycat
    wallycat Member Posts: 1,312
    edited March 2020
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    I'm not stage 3 (stage 1) but I still see my onco and it will be 13 years this year. She never runs tumor markers--thinks they are unreliable.

  • sugar77
    sugar77 Member Posts: 1,328
    edited March 2020
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    Yes, I was still seeing my oncologist for a cancer from 2009. He was very likely going to release me at my annual wellness check in January of this year but I got diagnosed with a new primary so I will still be his patient for at least another 5-10 years.

  • Aca1998
    Aca1998 Member Posts: 1
    edited March 2020
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    Hello there,

    I am now have one year left of Anastrozole [10 years]. My oncologist does run the blood tests/tumor marker and I just had mine done 2 days ago.Tests came back OK. I will stop taking the drug after 10 years but will continue taking Boniva as I tolerate it quite well. I do hope that the marker tests will continue but I will know more next year.

  • nancyd
    nancyd Member Posts: 557
    edited March 2020
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    I'm twelve years out last month and I still see my oncologist once a year. He does bloodwork, checks for any bumps around my upper chest, ask about unusual aches or pains, and answers any questions I have. We discuss my ongoing treatment (anastrazole), and he asks about side effects. We decide whether to stay the course (yes-minimal side effects) or stop.

  • mollyboo
    mollyboo Member Posts: 7
    edited June 2021
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    I have to go annually for the rest of my life! That surprised me, as I also see the oncologist & plastic surgery every yea