How much Follow-Up going Forward after Lumpectomy?

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macdebbie
macdebbie Member Posts: 171
edited December 2021 in Surgery - Before, During, and After

My RO told me that I would be "followed closely" for years and years due to my breast cancer.

But when I spoke to my BCS at my post-op appt. she said the follow-up is no different than someone who has never had cancer except for the MO following you every 3 mos with bloodwork because of the hormone blockers.

I had cervical cancer in 1988, and they did Pap smears every 3 months for a year, then every 6 months, then back to every year. I guess I assumed that breast cancer follow-up would be the same. I asked my BCS and she said they used to do mammograms every 6 months, but it was shown to have no benefit.

Is that how you all are being followed?

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited October 2021

    Pretty much true. Every 3 months for awhile. Then every 6 months. Then every year. Then..... You will need to 'fight' for follow up. Do ask for a "survivorship" plan. Lots of docs aren't doing this yet, but it's a written plan that details the months & years ahead.

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited October 2021

    I'm not taking hormone blockers, and my oncologist sees me every 6 months. I see my surgeon once a year after my mammogram - but twice I've had issues that led to an extra mammogram and visit with the BS. I assume the scar tissue will finish settling down eventually!

    I had kidney cancer the same year as breast cancer. Although it was stage 1, it was grade 4, and the urologist said they'd watch me like a hawk for several years. Well, first year I got 3 scans, second and third year I got 2, and now it's once a year. That hawk must have a powerful telescope.

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  • kksmom3
    kksmom3 Member Posts: 183
    edited October 2021

    I had a small 3mm tumor, and I've had annual mammograms/ultrasounds, I see the MO every 6 months, it's been 3 years, and I'm thinking they'll switch me to annual visits, unless, of course, I think there is a problem. They have never done bloodwork, they used my bloodwork results from my PCP when I was first diagnosed. I do have a written survivorship plan, and this is what it says. Are you being recommended a hormone blocker?

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  • macdebbie
    macdebbie Member Posts: 171
    edited October 2021

    Hi kksmom3. Thanks for the info. Did you have any lymph node involvement? I did not.

    I see that the NCCN Guidelines state "consider" for hormone blocker. The MO I saw said he wanted me on an AI and a bisphosphonate (because I have osteoporosis) for 5 years. I'm still on the fence if this is the best course for me rather than taking just Tamoxifen. I am post-menopausal. Trying to find an MO that will discuss the pros/cons as they relate to side effects and my many medical conditions to help me make that choice. MO said Oncotype "wasn't able to find anything" because tumor was so small, but chemo is off the table, thankfully.

    Have you been on a hormone blocker? May I ask which one and how it has been for you? Who did your survivorship plan? Was it your BCS or your MO?

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  • macdebbie
    macdebbie Member Posts: 171
    edited October 2021

    Hi AliceBastable. Sorry for all you have gone through. That's a lot. Did you have chemo? I'm curious why no hormone blockers? Thx for writing. Hope things stay stable for you.

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  • macdebbie
    macdebbie Member Posts: 171
    edited October 2021

    Minustwo - are you seeing the BCS/having mambos every 3 mos or is that your schedule with the MO? Did you have chemo? Who did your survivorship plan? I had not heard of that, and will definitely ask about it, just not sure who to ask.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited October 2021

    macdebbie - I had a bilateral mastectomy so no mammos. Then I had a recurrence in 2 years in a lymph node diagnosed with an untrasound & biopsy. Yes, then I had chemo and during that period & shortly there after, I had regular Echos to check my heart and regular PET/CTs to check if there was any new activity. And then a second surgery & a second chemo & then radiation & Herceptin for year. My MO who retired said I would have to fight for imaging. My "new" MO for the last 5 years believes in nothing. The radiolo0gist who originally diagnosed my cancer believes in a baseline MRI (which I did 2-1/2 years ago), and then an ultrasound every two years. But I think that's because I have Allergan implants and not because they're looking for a new cancer. And unfortunately he's moved from the radiology group & the hospital he was affiliated with from 2011 - 2019. I do have blood tests every 6 months, including the CA27-29. However since that has a reputation of not being reliable, I do it "just because", since I have to have the CA and D-3 tested before my Prolia shot every 3 months.

    I don't have a written survivorship plan, but I am finally meeting with a new MO next month, who will hopefully take me on as a long term sustenance patient - and create such a plan. I believe a survivorship plan is written up by either the MO, the RO or a nurse navigator. We will see if I finally get one..

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited October 2021

    macdebbie, no chemo. I had a micromet and my MO assumed I'd need chemo. She was all set for a port placement when I had a re-excision, but my Oncotype came in at the last minute at 17, which put me in the safe range. I took Tamoxifen for close to a year, but my CT scans started showing a fatty liver, and I found a research paper that said fatty liver and Tamoxifen is a bad combination. So I quit taking it.

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  • moth
    moth Member Posts: 4,800
    edited October 2021

    There are breast cancer survivorship guidelines here https://ascopubs.org/doi/10.1200/JCO.2015.64.3809

    Table 3 is a good summary of what's recommended

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  • MountainMia
    MountainMia Member Posts: 1,307
    edited October 2021

    I had triple negative diagnosed in Feb 2019, with lumpectomy, chemo, radiation. No follow-up hormone blockers or AI, because tnbc. My MO said I didn't need to see him again if I didn't want to, so I don't. My BS was going to cut me loose after 2 years, but I've had a new situation, so she will see me again in February (3 years after diagnosis) and likely another year after that. I see an NP in my cancer clinic's "survivorship clinic," so between the NP, my PCP, and the BS, I have 3 check-ups a year. But no special blood work. Intention is to have mammogram only annually, unless otherwise needed for a specific reason. I had whole breast US twice. The BS didn't intend to order it again, but again with the new thing to follow, I'll have that done again in February. If everything is okay then, likely I will only have mammograms annually.

    It is, I think, frightening to have less follow-up rather than more. But for the vast majority of us, we don't actually need a lot.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited October 2021

    Moth - that's a great link. Thanks

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited October 2021

    It sure is!

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  • kksmom3
    kksmom3 Member Posts: 183
    edited October 2021

    macdebbie, my survivorship plan was given to me by my RO. Yes, I was taking letrozole. I took it for 2.6 years. I tried anastrozole for a few days, I felt worse on that one. My main complaint is vaginal soreness. I have some elbow pain, of all things, and that hasn't gotten any better. I'm not sure if its related to the letrozole or not. The vaginal soreness has gotten a bit better but I think that's because I have attended to it constantly.

    Oh, and no, I did not have any lymph node involvement, thank God. I think it's good idea to try the blocker. See how you do. I was supposed to be on it for 5 years but I'm not going to be able to handle that. I have yet to tell them, yes, I'm frankly scared to say anything. My MO's been wonderful, but I'm just worried about saying anything. I want her to still follow me. I am 3 years out. I could probably get by with my PCP but I feel a little better being followed by the MO.

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  • Racheldog
    Racheldog Member Posts: 227
    edited December 2021

    I am glad to find some people posting on "survivorship" as this last year is coming to a close. I had a survivorship appt with the NP (meh...more of just a documentation in my chart of all I went through this year). I pushed to make sure I had appointments scheduled at 3-4 months. Feel like you sort of drift off and , once again, it is up to the patient to be proactive. I know Covid has not made things easy for oncology groups and clinics are hammered. As are mental health professionals and not many are cancer trained.

    I am also five months out from WB radiation and not a peep from the RO if I should have any return visit? Not sure what they look for or offer. I was having some general tightness but stretch that out on my own. But ?? Did any of you expect your radiation oncologist to reel you back in with their offices to check up on you?

    I don't know but survivorship is a bit weird and maybe the strong, push themselves, proactive BC patients are the ones who have to continue to monitor their own care. Seems like that is the future of healthcare is anyway? What do you all think?

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  • Mockingbird114
    Mockingbird114 Member Posts: 22
    edited December 2021

    Hi Racheldog,

    I had my last radiation session last week and met with my RO for the last time as well. I asked him if there was any follow up with him or his office and he said no. I was a bit surprised about that. He is setting me up with a cancer survivor specialist to help develop a long-term plan for the future. The MO would be the one who will actively manage my case now. I also will return to have a 6 month follow up with my breast surgeon for mammograms and an exam.

    I met with my MO, nurse practitioner a couple of days ago for labs and my first prolia shot. I asked her and she confirmed they would be the first line of response from now on. She did a brief exam and looked at the incision scar and the radiation area to make sure I was healing. My next appointment is 4 months away. I agree with you that I think we have to advocate for ourselves for the most part! I've been trying to find more resources in my area for support, exercise for BC patients, physical therapy....etc. and I cannot seem to find anything. Thank goodness tor on-line support groups!

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  • Aklynna
    Aklynna Member Posts: 46
    edited December 2021

    I had my 3 month follow up with my breast surgeon and asked what the long range plan would be. She told me I would have a clinical exam every 3 mo, Typically it would rotate between her and the MO, but I have declined hormone therapy (at least for now) so it will mostly be with her. No mammogram or anything else until 1 year.

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  • MountainMia
    MountainMia Member Posts: 1,307
    edited December 2021

    If you have physical tightness or trouble with range of motion, because of surgery or radiation or both, ask ANY of the medical team to refer you for physical therapy. Don't wait for a follow-up appointment and wait for them to ask. They might never ask! You need to advocate for that help on your own.

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