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  • mountainmia
    mountainmia Member Posts: 857
    edited January 2020

    Farfalla, sounds about right. My cancer center seems to be very reluctant to do anything that isn't proven to improve prospects. Again, it's not 100% clear to me yet, but I think the philosophy on follow-up screening is just what you've said. I don't have an appt with the BS until November; I have no future appts with MO unless something funky happens. And just as you said, some days that doesn't phase me, and others are much harder. Thanks.

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited January 2020

    I get the same blood panels as I did during chemo... I think they are mostly looking to see if liver markers, or something else, spikes or plunges. And looking also for any lingering post-chemo blood cell issues (which can be a SE of chemo). So far my blood work has been great/ unchanged. I suspect if AST went up they'd take a closer look at my liver, etc. So far so good. And I get a physical exam when I go in (I like having a second set of hands on my boob, lymph nodes, etc.).

    I am not certain if they are doing cancer markers on me, probably not-- as in my case when I was full of cancer the markers were very low.... so I doubt they tell very much about me. I decided to stagger my imaging and get mammos in July and any other imaging I need in Dec/Jan. (I have a scrip for a US-- I asked for it as a "second peek" with a six month stagger that is less invasive than a MRI-- but I haven't scheduled it yet.) I think I will go in this week. I figure, that way if something gets going in my breast I would know a bit sooner.

    My MO told me hed order an MRI if I needed one for peace of mind. So far Im doing ok without that.

  • moth
    moth Member Posts: 3,293
    edited January 2020

    Mountain Mia - there are evidence based guidelines for survivorship care.

    Of course each clinician would adjust based on the patient's individual risk level. One interesting recommendation is : "Recommendation 1.3:

    Should not offer routine laboratory tests or imaging, except mammography if indicated, for the detection of disease recurrence in the absence of symptoms"

    Table 3 is the summary of the recommendations

    https://acsjournals.onlinelibrary.wiley.com/doi/full/10.3322/caac.21319


  • mountainmia
    mountainmia Member Posts: 857
    edited January 2020

    thanks, moth!

  • ucfknights
    ucfknights Member Posts: 91
    edited January 2020

    the anxiety kills me really. Even when my mom has a routine bloodwork i get so frantic and anxious :(

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited January 2020

    ucfknights: try to remind yourself that you will have plenty of time to worry later if there is a definite reason to wory. For now, if you can try to rest that worry gear, and believe the best and see how things go, it will help you have stamina to actually assist your Mom. Put the worry into acts of love as much as you can-- you are worried because you love your Mom, so instead of fretting, put the love into action-- leave her a note on her mirror or bring her favorite smoothie or whatever. You BEST help her by taking charge of your own worry and that means putting it away, until needed, as much as possible. It will be there and come back no matter how little attention you pay to it, but you do have the ability to dismiss it to the future and remain in a positive mental space more of the time.

  • vl22
    vl22 Member Posts: 471
    edited January 2020

    MountainMia - I'm sorry you feel badly. The truth is you need to give yourself time. I was in excellent shape when I was diagnosed in May 2017. All the doctors were telling me how fast I'd bounce back.

    Nope.

    I finished all surgery and treatment in February 2018. I honestly felt horrible until the end of 2018. I tried unsuccessfully to return to my running regimen. Tried to shed the chemo weight - yeah right. Tried to sleep through the night again - no. I just felt like crap, which would get me depressed. And then everyone around you thinks you should be happy and up and about because YAY! It's over right?

    It took me a year to get back into a groove. I changed my workout routine. My terrible muscle and bone pain from chemo finally went away. I don't think I'll ever sleep through the night again, but hey,I'm alive.

    After treatment, I got bloodwork done 3 months out, 3 months again, then 6 and that was it.
    Mammo like normal - once a year

  • mountainmia
    mountainmia Member Posts: 857
    edited January 2020

    VL22, thanks for sharing your experience. It sounds like I just need to be patient. I guess part of what surprises me is that in October and November, before my reduction surgery, I was feeling really well, and pretty energetic. My strength seemed to be coming back and endurance was improving. Then all the progress stopped and I went way backwards. :(

    I actually have an appt with PCP tomorrow, which was made for me to follow up after my fall/concussion. So I'll be able to check with her on some of it then.

    Thanks, everyone, for the encouragement and wisdom.

  • mountainmia
    mountainmia Member Posts: 857
    edited January 2020

    I had a follow-up appt with my PCP because of my fall and concussion on 12/30/19. My blood pressure was still quite low. I'm medicated for mildly elevated high BP. So she told me to stop taking medication for now and see if it comes back into a more normal range, and if my energy improves with that. My annual exam is on 1/21/2020, so we'll check on how that's going then. Plus of course I have a BP cuff at home, so will check it several times between now and then.

    She also showed me my CBC results, which for whatever reason hadn't shown with other test results on my patient portal. My white blood count is pretty low. I don't know how long that takes to rebound after the chemo and radiation, but possibly my immunity isn't great, which could be why I got 2 colds in the span of 4 weeks.

    The rational part of my brain is all okay with all of this, and assumes that we'll figure it out and pretty soon I'll be feeling strong and pink. The anxious part of my brain is sure something horrible is going on in my body... I know you know what I mean!

  • vl22
    vl22 Member Posts: 471
    edited January 2020

    MountainMia - that’s what is wonderful about having this place to share - we know exactly what you mean! My last bloodwork at my regular Dr had my white blood cell count a itty bit low. Everything else was fine. I was supposed to go back like a month ago to get it rechecked - I haven’t because I’m scared. I feel fine and I really think it’s nothing but....and there go the thoughts that keep me up at 3am! I plan to go after my kid goes back to college after winter break in a week.

    Cancer just sucks - I just love when I forget about itfor an extended period of time.


  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited January 2020

    check this out everyone, posted by BevJen in Lumpie's thread...

    https://www.cancernetwork.com/breast-cancer/cytodyn-files-breakthrough-therapy-designation-leronlimab-metastatic-tnbc

  • Gamb
    Gamb Member Posts: 570
    edited January 2020

    Very interesting Santabarbarbian, thanks for the site?

  • maryjv
    maryjv Member Posts: 269
    edited January 2020

    thank you santabarbarian for all of your insight!!!you are truly an inspiration to us all 🙏

  • ucfknights
    ucfknights Member Posts: 91
    edited January 2020

    hi ladies, I'm wondering who here gets there ca13-15 checked? My mom does anddo not understand it

  • mountainmia
    mountainmia Member Posts: 857
    edited January 2020

    I think you might mean ca15-3. ?? I don't have any blood markers checked.

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited January 2020

    Hmm, I just had blood test for 1/30 appointment, and along my regular blood tests, they ran cancer antigens this time. Maybe annual? (1 year post surgery?) I find it funny as they were low when I was full of cancer.... we shall see....

  • mountainmia
    mountainmia Member Posts: 857
    edited January 2020

    Interesting, SB. No one on my care team has any intention of running cancer antigen blood tests, unless there is some symptom to suggest it.

    I do have my first mammogram scheduled for Friday, along with a whole breast ultrasound. Had my regular annual physical last week and, aside from lingering fatigue, seem good to go. (Diagnosis last February after screening mammo, diagnostic (call-back) mammo, US, and biopsy.)

    Good luck and many blessings. I hope all is well with you.

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited January 2020

    I believe all is well-- but it's nice to get the blood tests to confirm!

    I hope your mammogram is a similar comfort!

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited January 2020

    from Lumpie's thread posted by debbew

    https://eurekalert.org/pub_releases/2020-01/asrc-att012920.php

  • Gamb
    Gamb Member Posts: 570
    edited January 2020

    Thanks Santabarbian. Great article.

  • mightlybird01
    mightlybird01 Member Posts: 161
    edited January 2020

    Thanks Santabarbarian. Very interesting link.


    Let us know how your appointment went. Hope all well!

  • Katiekins
    Katiekins Member Posts: 32
    edited January 2020

    Thanks Santabarbarian, appreciate you keeping us up on the latest

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited January 2020

    My blood work was great. All normal! Yay.

    I asked why they did the cancer markers; they had done them 3 x during my treatment but not since then. They said they throw it in periodically if the patient has any complaint. I had a few weird eye things, they did not think they had anything to do with cancer but they ran the markers just to be prudent. But I doubt my low numbers mean much, because they have always been low even when I had a high grade active cancer.



  • mightlybird01
    mightlybird01 Member Posts: 161
    edited January 2020

    congrats on the good blood test! One more hurdle taken :-)!

  • farfalla6
    farfalla6 Member Posts: 92
    edited January 2020

    just reporting in. I don't post much but am following. I had my yearly mammogram with IV contrast and ultrasound and all was clear. What a relief, but I also know that 1 year out is not out of the woods, but trying to celebrate the now.

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited January 2020

    Yay farfalla!!!!!

  • Gamb
    Gamb Member Posts: 570
    edited January 2020

    Congrats Faralla!!!!

  • mountainmia
    mountainmia Member Posts: 857
    edited January 2020

    Yay, farfalla! That is great news. What a relief, huh?

    I had my 1-year mammogram and a whole breast ultrasound today, too. Mammogram results already reported -- everything looks normal except the expected surgery disruptions. I'm still waiting to see the US report, but I don't anticipate any problems.

    Between that and my regular physical last week, my background anxiety seems to be settling a bit.

  • maryjv
    maryjv Member Posts: 269
    edited January 2020

    Congrats ladies!!! So inspiring 🙏

  • mightlybird01
    mightlybird01 Member Posts: 161
    edited February 2020

    Congrats ladies!

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