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NED Follow-up care

brutersmom
brutersmom Member Posts: 874

If you are NED. How often do you see your oncologis? How often do you have scans? What meds are you on?

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,724

    NEAD for 12 years. I see my mo every 6 months, PET scan annually. My doctors do not do tumor markers. I have been on one AI or another until three months ago when my mo suggested a break from Exemestane. Never had chemo and newer drugs such as Ibrance and Verzenio were not approved when I was dx’ed. My situation has been unusual from the start.

  • spookiesmom
    spookiesmom Member Posts: 8,167

    I kept my port, so it got flushed 6 weeks or so, saw MO every few months. Labs then to keep eye on things. Yearly scan. Now dx 3rd time,, think I should just move into his office.

  • olma61
    olma61 Member Posts: 1,016

    I answered your question in a different thread but I want to say here that if you are not comfortable with NO scans until a change in your tumor marker tests, don’t be afraid to tell your doctor you are not comfortable and would like to scan regularly at whatever interval you feel comfortable with.

    I am not a doctor or a medical professional of course but it does seem unusual to do NO scanning and to rely so heavily on tumor marker tests in a patient with metastatic cancer.

    I also debunk “waiting for pain” as a sign of cancer, I had Mets to my spine and had ZERO pain and in fact had begun exercising after a long period of inactivity. I had ZERO symptoms of anything wrong until the lump on my breast made itself known.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,724
    edited November 2023

    With respect to olma’s comment on waiting for pain, I should add that in addition to my annual scan my facility doesn’t hesitate to scan if I experience issues of any sort. So in addition to a regular scan, other scans are used as needed. It is comforting to me to know I will have an annual scan but also no hesitancy to scan outside the schedule. I will say that I was a bit nervous when we moved to an annual scan but I’m good with it now. Discussing your feelings with your mo and hopefully, you’ll come to a place where you’re comfortable. Take care

  • brutersmom
    brutersmom Member Posts: 874

    Exbrnxgrl. How long were you NED before you switched to once a year? I think what makes me nervous is when they found my breast cancer is was in a routine mammogram and I had no symptoms. My pleural effusion was also found by accident. I was functioning for several months with very mild symptoms and my O2 levels never dropped nor did I have shortness of breath until I was almost fully crushing my lung. It was believed to be a side effect fro the NAIDs I took for knee pain that had irritated my stomach.

  • sunnidays
    sunnidays Member Posts: 152

    The oncologist I see, the protocol is if you are stable for two years the scans and blood work are every 6 months however the oncologist emphasises that if you have any symptoms you are to come back to them and don't wait for the appointment.

    For those who are very long-term stable, it goes to a yearly scan

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,724

    brutersmom,

    Forgive my foggy memory. I have been NEAD since my initial tx (rads to my bone met). I believe I had scans every 3 months for about 18 months, then moved to every six months and by year 3 or 4 moved to annual scanning. These time frames may not be exact but they are in the ballpark.

  • brutersmom
    brutersmom Member Posts: 874

    Exbrnxgrl. Thank you.

  • seeq
    seeq Member Posts: 1,083

    Brutersmom - I stretched my scans out to six months, with labs every three months. My first MO (Florida) was willing to do labs less often but I wasn't since I was basically asymptomatic. He was happy to accommodate my concerns. When I thought I was ready to go to six months for labs, my new MO (Texas) wasn't having it. Now that something subtly questionable is showing up on my scans and my TMs are creeping up out of the normal range, we're back to three months.

    Always, If I'd had symptoms or a big uptick in TMs, we'd have scanned earlier.

  • brutersmom
    brutersmom Member Posts: 874

    Seeq thank you for sharing.

    I am beginning to come to terms with what I was told on my last oncologist visit. That was no more scans unless my ca27.29 goes up or I have symptoms. When I was first diagnosed it was found on a mammogram and I had no symptoms. It was IDC 6mm. 7.5 years later I get it in my pleura. I had a hacky cough for about 3 weeks but I also had asthma. I did not get short of breath until I showed a house to a former client that was full or smoke and had a wet basement. That was when I realized something was wrong. My thought was my asthma was out of control. I work out 4 days a week. I went to urgent care and the PA I saw sent me to the hospital. He could believe my O2 level was 98 when my right lung was almost totally compressed.

    I think I am scared that I won't have noticeable symptoms until it has spread. I am not even a year out and I have only had a lung scan since the initial scans. Which were all negative. On top of my cancer my brother was just diagnosed with prostate cancer, my husband has had sepsis and sudden profound hearing loss in one ear and partial hearing loss in the other in the last 4 months. They are not yet sure what is causing this they think it is a virus in his system. I have had to switch MOs because my original MO this time around became ill and retired. I have not seen the new one. On top of that I have had chronic knee pain for almost a year and a half. My miniscus totally detached and I feel like it rubs my tendon and muscles when I walk to much. Instead of knee surgery in January of 2023 I started my metastatic cancer journey.

    I will reach the one year mark in January. I am going to ask for scans. If every thing is clear I might consider longer time between scans. I need that peace of mind. Until I have my neutrophil issue under control I will need to be seen monthly.

  • seeq
    seeq Member Posts: 1,083

    Brutersmom - wow! Your family is really having a tough time, collectively. I'm so sorry for all you're dealing with.

    Your new MO may have a different approach on scan frequency. If not... I was going to say I think I'd try to stay in tune with changes in my body, without going down too many rabbit holes...but actually, I'd be considering a second opinion.

  • brutersmom
    brutersmom Member Posts: 874

    Seeq. I am sitting at my husband's ent. They are doing some tests. Now they want him to see a neurologist because of ischema seen on the brain mri. She said it is significant. Will it never end.

    I have already picked out my second opinion location. So at the moment I feel pretty comfortable with my plan. Just taking it one step at a time. Should have a solid plan at the end of the month.

  • seeq
    seeq Member Posts: 1,083

    Brutersmom- best of luck to you and your husband with regard to his brain mri.

    Good for you for getting a second opinion. And I agree, having a plan in place makes things feel more manageable. I hope you can settle into a plan for your dh, too.