Follow up appointments

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JudyO
JudyO Member Posts: 225
edited June 2014 in Stage III Breast Cancer

This afternoon I went for a 4 month follow up appointment with my oncologist. I was on a 3 month schedule until I hit 3 years and then it was changed to 4 months. I will be 5 years out next month and thought maybe he would change the schedule to 6 months. He said no I will continue on 4 month follow ups. I really don't see a need for such frequent follow ups. The nurse does a quick questionaire and take the vitals. He hasn't done blood work in about a year now, all he does is a quick examine of the breast area. He feels since I had so many lymph nodes positive (7) I am at a high risk and need to be watched closer than some. I wouldn't argue with that but don't feel his examines would find anything anyway. Just curious what the follow up is for some of you. ( I live in the USA)

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  • fredntan
    fredntan Member Posts: 1,821
    edited April 2013

    I justfinished tx. Mine doesnt even do yearly bloodwork. I saw NP last time. Her physical exam was with me sitting up and clothed. All it consists of is questions vitals and copay. Am looking for new MO. My family practitioner gives me better fu care than my mo

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited April 2013

    Hi Judy,



    I'm about 3 years out from the end of active tx and my onc sees me every 6 months as has for a while. Although she doesn't do bloodwork her nurse does a complete q and a then BP, temp etc. the doc reviews it then gives me a complete "breast" and node exam. I had a LOT of positive nodes. She told me this last time I could see my surgeon in 6 months and then not see her for a year. I may take her up on that as even though I like seeing her it might be a good idea to have a different set of eyes and hands look at me.

    I think each doc is different, and you definitely need to be comfortable with what they do. Hope you find one that you connect with better!

    Sharon

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  • karen1956
    karen1956 Member Posts: 6,503
    edited April 2013

    Judy.....my onc kept me on a 3 month schedule till year 5....then he went to 6 months.....he does a history, tumor markers, CBC and CMP, and physical.....I don't like going as its a reminder that I had breast cancer whereas the rest of the time life just goes on......but I think my onc feels the same way as yours...that I'm high risk for recurrence.....I am now 7 years since Dx!!!  I like my onc and he only treats breast cancer so I don't plan on switching....so every 6 months I brave and go see him!!!

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  • Momine
    Momine Member Posts: 7,859
    edited April 2013

    I get a blood panel for each visit, with tumor markers. First 2 years also annual CT and bone scan. Once I am past 2 years, we will continue the blood panels and do annual chest X-ray and liver MRI. I also get a dexa 2X a year to monitor my bones (since I am taking letrozole).

    I think you need a new onc.

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  • katyand4
    katyand4 Member Posts: 171
    edited April 2013

    I go every 3 months and blood work is done.  Breast and node exam as well.  I figure I'll just keep going till they tell me not to.

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited October 2014

    i'm just over a year out of stage IIIc. my onc is at mgh. i see him every six months. he says no need to come more often. if cancer comes back, i'll know it. every four months seems too often. if you only want to do every six months, that is certainly your right. also less of a ding on your insurance.

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  • gillyone
    gillyone Member Posts: 1,727
    edited April 2013

    At almost 4 years I see MO every 6 months with bloodwork the day before. Nurse checks vitals then MO does breast check and chat etc. Annual mammo. No visits to RO or surgeon. I can handle twice a year and am always told to make an appointment in between if I feel the need.

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  • mary625
    mary625 Member Posts: 1,056
    edited April 2013

    Gillyone--just hearing that you are four years out has made my day!!!!!

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  • Maggs09
    Maggs09 Member Posts: 193
    edited April 2013

    Question for girls that have tumor markers included in their blood work during follow up appointments:

    Which tumor markers do your oncologists request?

    I only get CEA, just because I had another primary colon cancer at the same time as BC.

    Also my latest CBC shows only WBC sitting at 3000 (normal 4500-11000), and I finished chemo in November, rads in January and it is already April.

    Also my RBC (red) are below normal range (3.83 vs normal 4-5.2), lymphocytes only 0.8 (normal 1.5-3.4)

    Should I worry? What does it mean? My dr is not giving me any answers.

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  • gillyone
    gillyone Member Posts: 1,727
    edited April 2013

    Mary - there are lots of us!!!Smile

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  • fredntan
    fredntan Member Posts: 1,821
    edited April 2013

    Maggs i wouldt worry. It takes a while fror our bodies o bounce back.

    Momine damn you have a good one Spain too far for me

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  • Momine
    Momine Member Posts: 7,859
    edited April 2013

    Maggs, I get CA 15-3, CA125 and CEA for TMs. I think the CEA is because I have ILC, but I am not really sure, truth be told.

    As for the blood counts, they can be low for a long time, even chronically, after chemo. My mom is totally fine and 6 years out from ovarian cancer, but her blood counts have never really recovered. In my last blood panel, which was in January almost exactly a year after finishing chemo, I had 4230 for whites and 4.24 for reds. Those are squeaking into normal, but not exactly stellar. I eat really well, exercise etc. Checking my nifty little spread sheet, I see that when I was about the same amount of time out from chemo as you are now, my numbers were almost exactly like yours. So, take care of yourself, get some protein and some exercise and be patient.

    Fredntan, I am actually in Greece ;) Lily is in Spain. My onc is a Greek from Chicago.

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  • Maggs09
    Maggs09 Member Posts: 193
    edited April 2013

    Momine, thank you for sharing your information. I was worried, I wished my dr explained better about blood.

    I also had ILC with colon, but colon was unrelated. They usually suspect Lynch syndrom with ILC/colon combination, but my genes responsible for this came back all "normal", so it was just a coincident.

    I've noticed you are on Femara. I'm still on tamoxifen (since Dec/12), but weighting an option of having ovaries removed and switching to AIs. But I'm so afraid of SE...

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  • fredntan
    fredntan Member Posts: 1,821
    edited April 2013

    I could do trip to greece to see your onco momine. And deduct it frommy taxes .



    I had head ct today headaches. Was negative. Was freaking myself out thought i had brain ca. Whew

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  • Momine
    Momine Member Posts: 7,859
    edited April 2013

    Maggs, you are welcome. As for the ooph+femara, that was my choice, backed by my surgeon (who only treats breast cancer and also does follow-up). I was 47 at DX, 48 when we did the ooph. We have zero family history of heart disease, and other than the cancer, I seem to be very fit etc. I also was clearly heading into menopause anyway. The SEs from the femara are not super-fun, and in combo with the ooph it has been, uhm, interesting on some levels (vaginal dryness mainly, but you can have that problem on tamox too), but all in all I am really doing pretty well. A recent study showed femara more effective against ILC than tamox. My surgeon hinted at same, just from experience.

    Fran, now you are thinking straight, lol. I will take you for some calamari and ouzo after we go swimming.

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  • anneflorida
    anneflorida Member Posts: 59
    edited April 2013

    I am 3 years out and have recently been changed to 6 month visits instead of 4 months.  At all of my check ups, I get blood work which includes Ca-15.3, wbc, physical exam and complete panel.  I also have an annual PET scan and it is scheduled for this summer.  Other follow up  is annual mammogram and bone density.

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  • Maggs09
    Maggs09 Member Posts: 193
    edited April 2013

    Anneflorida, since you are having regular WBC done, I thought I would ask you this question.

    I finished chemo in Nov/2012, rads Jan/2013. I was getting Neulasta with my chemo, so my WBC were never low... Until recently .

    I had CBC done end of March and my WBC are only 3000 (normal 4500-11000). RBC are also slightly below, but not as much. I'm worried, but my dr doesn't seem to care...

    When is the blood going to normalize?

    Also CA 15-3 marker - is it routinely done at your centre? My onc refuses to do it.

    😊

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  • anneflorida
    anneflorida Member Posts: 59
    edited April 2013

    Maggs09,  I don't have anything to say about WBC as mine have been normal.  My doctor uses the Ca 15.3 to track how stable they are over time.  Since my initial Ca 15.3 which was 32(normal is under 30), all of my numbers have stayed slightly elevated up to 38.  My doctor says that it hits 50 he would scan me.  I do know that many doctors do not use it.

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  • Maggs09
    Maggs09 Member Posts: 193
    edited April 2013

    Thank you for the information.

    I'm glad that your dr uses this test. Personally I think that doing anything and everything that may give even a slightest indication that "something maybe going on" and should be checked is important and may save life. I understand that those tests are not 100% reliable, but they may help to catch any changes before they become very serious. I wished my dr wasn't such a "protocol follower".



    Hugs,



    Maggs

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