Besides the cancer scans I see my cardiologist every 3 months as I am in stage IV HF with an ICD and have to have to checked out. And then there’s the pulmonary and neurological appointments So it’s quite a rigorous routine Didn’t expect my golden years to be spending so much time in waiting rooms
This is something that helps me with scanxiety. I stopped calling it a test because that made me think of it like a test from school. Something that was pass or fail. I call it a scan and see it as a picture at a particular time. Just like bloodwork -- there is no pass or fail, just information to know more of what's happening with the body. There is no pass or fail to it. It just is.
This is something that helps me with scanxiety. I stopped calling it a test because that made me think of it like a test from school. Something that was pass or fail. I call it a scan and see it as a picture at a particular time. Just like bloodwork -- there is no pass or fail, just information to know more of what's happening with the body. There is no pass or fail to it. It just is.
The cycle of scans, waiting, scans, waiting can be a difficult one. I'm on a 3 month cycle too. I generally think that I handle it well, but after a scan I do feel the relief. So, I know I'm not entirely honest with myself about how I'm feeling during the lead up to scan day too. The people around us, just want us to be ok so it's not always easy to talk about how we're feeling. It's normal to feel isolated. We're alone with the heaviness of our thoughts. I try to work through the feelings, and don't allow myself to sit in that place for too long. Talking with someone can be helpful.
You may want to reach out to your care team, a social worker or palliative care member, they may be able to help in finding ways for you to work with the waves of depression.
HiYi Lisa - I’ve been doing this every 3 month wait n test again thing since ‘22. Didn’t get serious til oct 23. It’s boring frightening unnerving confusing. Yes I’ve met with the oncology team at Hillman Concerned the upper mass didn’t shrink more and has stellate abnormalities. Also new middle lobe nodules. Also very high level of ionized calcium whole blood. I’m back at home so a-ok for now! Scheduled me fo
HiYi Lisa - I’ve been doing this every 3 month wait n test again thing since ‘22. Didn’t get serious til oct 23. It’s boring frightening unnerving confusing. Yes I’ve met with the oncology team at Hillman Concerned the upper mass didn’t shrink more and has stellate abnormalities. Also new middle lobe nodules. Also very high level of ionized calcium whole blood. I’m back at home so a-ok for now! Scheduled me fo
F/U report from Dec’23 SBRT on right lung: Lower pleural parenchymal nodule has reduced from 1.7cm to 6mm. Middle lobe shows multiple small micro nodules < 2mm. Upper mass abnormality has decreased from 1.8cm to 1.3cm with stellate abnormalities and a linear visceral pleural tail. No lymphadenopathy or effusions. The scans did show hypodense areas within the iliac bones bilaterally. Follow Up PetScan in 3 months. dga
Hi Dave @dave56pa, These reports are often difficult to interpret without a clinical background. The reduction in the primary nodules is great news. I'm assuming that you've had a chance to discuss the results with your oncologist. Did they think the other micro modules were anything concerning, possibly irritation from the radiation? How are you feeling about watching and waiting, or as some like to call it the 'active surveillance' approach?
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Besides the cancer scans I see my cardiologist every 3 months as I am in stage IV HF with an ICD and have to have to checked out. And then there’s the pulmonary and neurological appointments So it’s quite a rigorous routine Didn’t expect my golden years to be spending so much time in waiting rooms
I like your term “scanxiety”.
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1 ReactionHi,
This is something that helps me with scanxiety. I stopped calling it a test because that made me think of it like a test from school. Something that was pass or fail. I call it a scan and see it as a picture at a particular time. Just like bloodwork -- there is no pass or fail, just information to know more of what's happening with the body. There is no pass or fail to it. It just is.
I hope this helps. 🙂
BPB
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5 ReactionsThe cycle of scans, waiting, scans, waiting can be a difficult one. I'm on a 3 month cycle too. I generally think that I handle it well, but after a scan I do feel the relief. So, I know I'm not entirely honest with myself about how I'm feeling during the lead up to scan day too. The people around us, just want us to be ok so it's not always easy to talk about how we're feeling. It's normal to feel isolated. We're alone with the heaviness of our thoughts. I try to work through the feelings, and don't allow myself to sit in that place for too long. Talking with someone can be helpful.
You may want to reach out to your care team, a social worker or palliative care member, they may be able to help in finding ways for you to work with the waves of depression.
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2 ReactionsDon’t be shy about talking to your clinicians re depression.
Ty. Mostly I’m a pretty upbeat take my meds and adjust my routine as health allows. It’s just the waiting time between tests that gets on your nerves.
I neglected to mention depression One can become saddened and isolated at times when not feeling well and facing unknown challenges
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2 ReactionsScheduled me for a (you guessed it) 3 month f/u pet scan.
HiYi Lisa - I’ve been doing this every 3 month wait n test again thing since ‘22. Didn’t get serious til oct 23. It’s boring frightening unnerving confusing. Yes I’ve met with the oncology team at Hillman Concerned the upper mass didn’t shrink more and has stellate abnormalities. Also new middle lobe nodules. Also very high level of ionized calcium whole blood. I’m back at home so a-ok for now! Scheduled me fo
Hi Dave @dave56pa, These reports are often difficult to interpret without a clinical background. The reduction in the primary nodules is great news. I'm assuming that you've had a chance to discuss the results with your oncologist. Did they think the other micro modules were anything concerning, possibly irritation from the radiation? How are you feeling about watching and waiting, or as some like to call it the 'active surveillance' approach?