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Questions for your "end-of-treatment" oncologist appointment?

sarahnh
sarahnh Member Posts: 105

What questions did you ask your oncologist, at your final visit after chemo/treatment? And/or what information should I hope to get?

My last HP is on Thursday, and I'll have an end-of-treatment visit with my oncologist while I'm there.

Any tips or suggestions?

Comments

  • alicebastable
    alicebastable Member Posts: 1,934

    Won't you still see your oncologist? Mine sees patients on hormone blockers every 3 months for bloodwork, and people like me, who don't take them, every 6 months. But if I have something questionable going on, she schedules lots of tests and more frequent office visits. When my BS mentioned last year that 2023 would be my last visit with her, I asked about the MO. The BS said the MO hangs on to patients forever unless her schedule gets overloaded or the patient decides they no longer want to go.

  • sarahnh
    sarahnh Member Posts: 105

    Thanks, yes, Thursday will be my end-of-treatment appointment. So it sounds like one question I should ask is, how often should I return for followup appointments? And another is, do I contact her directly or go thru my PCP, if I have something questionable going on?

    Did you have any other questions for your oncologist at your final (or "semi-final") appointment?

    Should I expect to be given any sort of followup plan, or just "bloodwork looks good, see ya!"

    I just don't want to squander the opportunity!

  • alicebastable
    alicebastable Member Posts: 1,934

    I didn't have chemo, so I can't address that part of it. I've never had to go through my PCP except to have them fax a referral to the MO's office because my insurance requires that. But the scheduling frequency is between the MO and me.

  • melbo
    melbo Member Posts: 266

    We had a similar diagnosis and I saw my MO and SO every 6 months for the first two years — but staggered so I saw one or the other every 3 months. My MO ordered blood work for those visits, but the PA in the SO’s office did a manual exam and talked to me. I also had follow up mammograms, which wouldn’t be an issue if you had a mastectomy.

    During one of my SO visits I was concerned about changes to my breast tissue in my cancerous breast, and they immediately got out the ultrasound to check it out and sent me to the radiologist to confirm it was just necrotic breast tissue.

    I just saw my SO for the last 6 month visit earlier this week and will see her again in a year. I see my MO in March and will switch to annual visits as well.

    The big questions I had were : how often will you have appts and with who. What sorts of things should you be looking out for? when will they consider you in the clear? They won’t be kicking you to the curb no matter what though and you should be able to call or make additional appts for any issues that come up

  • elainetherese
    elainetherese Member Posts: 1,625

    HER2+ cancer is most likely to recur during the first few years after treatment. You should be seeing someone at least every six months during those years. Since you did a double mastectomy, mammograms aren't necessary. However, maybe some manual exams? Maybe a scan every other year? By five years out, you might not need any follow-ups, as HER2+ is unlikely to recur at that point.

    I also see that you are ER-/PR- -- that means no hormonal therapy for you. I'm almost 9 years out, and I still see my oncologist every six months because I'm doing Zoladex + Aromasin, as well as Prolia (to increase my bone density).

  • specialk
    specialk Member Posts: 9,211

    My schedule after chemo was finished, but still on Herceptin, was every three months with labs (CBC, CMP, Vit D, CA27/29, CEA) and a physical exam of post-mastectomy chest and palpation of axilla, check of ankles for any swelling, vitals, listen to heart and check lungs with stethoscope, and a weigh-in. I had a post-chemo PET, and a post-Herceptin PET. After a year I moved to every six months, but didn't really leave that schedule for quite a while due to several scares that have required additional labs looking at parathyroid, an MRI and off-schedule DEXA for hip pain, elevated alkaline phos that can signal mets, and new biopsies for a bi-laterally abnormal PET. Fortunately none of those things turned out to be issues, other than the hip - which was stress tears in the muscle and trochanteric bursitis that required a long course of physical therapy. Parathyroid was normal, elevated alk phos was due to tooth extraction and implant that drove the value up and persisted long after - abnormally so - but finally resolved. Biopsies showed multiple different kinds of inflammatory process in post-surgical sites. I finally moved to an annual MO appointment - with all of those same labs and exam, a few years ago. I continue with that, and I was diagnosed 12 years ago. I no longer see the SO, stopped at year two I believe, but I had alternated those visits with the MO as described by others. My MO manages my prescriptions for lymphedema garments now, but that initiated with the SO. I have seen the PS a lot - due to all of the skin healing issues I had, but I am now on an as needed basis with that, after what I hope is the last surgery almost 18 months ago. I very much appreciate my MO doing a very thorough exam and labs each year, I could probably discontinue seeing him, but I don't really want to - we have a great collaborative relationship, and I admit to be a little superstitious - I don't want to change what I have been doing - it is working, lol! My primary care was at the military base, but once I reached Medicare eligibility I was cut loose from there due to staffing limitations. That was during pandemic restrictions so I have struggled to find a civilian primary care doc taking new patients. I finally got an appointment with the one strongly endorsed by my MO, but her first appointment in not until October 2023. Glad my MO can fill the gap in the meantime - I see him next month. Even though Tampa is not a small town I also like that every specialty doc I see - dermatologist, urologist, vascular surgeon, PS, and soon primary care - is well known by my MO. He either went to school with them, or they are his docs too. Love that.

    One question that may be good to ask is follow up cardiac imaging - either MUGA or echocardiogram. I had them during the year of Herceptin but have not had any since. I also have a heart murmur, so it was recommended (by the on-base primary care) to have a routine cardiac workup. I did ask the MO who to see that has experience with any Herceptin or chemo induced heart problems and he gave me a referral, but I have not done that yet. Another question is what exams/imaging/labs would your MO routinely do, or not do? Many who exit active treatment are triggered by labs/exams and don't want any, others want the continued surveillance. It is a question I think many of us don't ask at the beginning of treatment because we are so focused on starting active treatment and getting on with it. What happens after that is not front of mind, but I have seen many posts by members who are surprised that there is no plan to do labs or image in the absence of symptoms.

  • maggie15
    maggie15 Member Posts: 764

    How long you stay with your MO seems to vary quite a bit depending on your diagnosis, whether you have a current prescription from them, which facility you have been treated at and how busy the doctor is. ASCO has cancer specific survivorship plans to be filled out by the doctor which summarize treatment received and recommend follow up care as well as specify which medical professional should be providing it.

    https://www.cancer.org/treatment/survivorship-during-and-after-treatment/long-term-health-concerns/survivorship-care-plans.html


  • sarahnh
    sarahnh Member Posts: 105

    Oh my gosh, thanks everyone, all this is EXACTLY what I need! I was such an expert at asking questions about treatment...but have been drawing a complete blank for post-treatment.

    Those ASCO survivorship plans are a great help too maggie15 - I downloaded and printed the general and breast-specific survivorship plans.

    I've written down questions based on everyone's info and suggestions. Please post any other thoughts -- I will check in again before my appointment tomorrow. Thank you thank you thank you!