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Annual Testing - Long Term Survivors

Posted by jcl2018 @jcl2018, Jul 22 6:12am

I was diagnosed and treated in 2008. Cancer in tonsil. SCC. I don't know the root cause (HPV/other). 33 radiation. 6 chemo cisplatin & taxol. I'm now 67.

Curious as to what annual testing/visits the long term survivors (10+ years?) still have going on.

In my case: Annual visit to ENT/original surgical group (primarily scoped) Annual chest CT (I was told looking for 2ndary cancer). Annual thyroid ultrasound (I do have nodules - maybe unrelated). Scheduled doppler of my carotids. Appt with medical therapy group to discuss neck fibrosis and arm issues.

Add on regular Dr. visits and std blood work, Cardiologist (calcification discovered - probably unrelated),

I'm not looking for recommendations on what to do/not to do as that is an individual decision. But I have to admit I feel "Doctored out" sometimes.

Thanks in advance

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gangcarotid1 | @gangcarotid1 | Jul 23 8:32am
In reply to @hrhwilliam "Annual cancer checkups going on for eighteen years now? Do I have that correct? And an..." + (show)
Profile picture for William Olsen, Volunteer Mentor @hrhwilliam

Annual cancer checkups going on for eighteen years now? Do I have that correct? And an annual chest CT?
Wow! Just wow. I have never heard of anything like that. Common for checkups up to five years out, some for three years. One would think that a chest CT yearly would cause more harm than good, it is radiation after all. What besides gold from you or your insurance are they looking for?
Non-medical advice: go to a different clinic. Get a second opinion on cancer follow up.

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@hrhwilliam
I go twice annually to Mayo for CTs of chest, abdomen, pelvis due to being considered intermediate risk for kidney cancer recurrence. Its been allmost 2 years and at some point it will go from semi-annual to annual if all continues good.😉

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ernierogersquamus123 | @ernierogersquamus123 | Jul 23 11:49am

Part of me taking charge is that I am meeting with a palliative care provider. Hopefully they have options to help me feel better .and eat .

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roblem | @roblem | Jul 23 3:14pm

I agree with @hrhwilliam comments, and I also had cancer in the tonsil in 2008.

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judyandchloe | @judyandchloe | Jul 24 10:20am

Truly true about the barium paste for upper gi testing…I agree it is a gag reflex test!

I personally and also my mom wonder why we don’t glow in the dark for the x rays we have had

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tri327dent | @tri327dent | Jul 25 1:19pm

Just a few days ago, I said to my wife that I am feeling medical over load lately, so I think I understand your "doctored out" comment. Today was a good day, I cut the lawn and cared for my tomatoes and this evening I get to hold my sweethearts hand and watch some tv.

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ingleside | @ingleside | Jul 28 8:11am

Treated in 2019 Craniotomy 8 chemo 33 radiation. Still undergoing Keytruda treatments every six weeks. It's nice to hear a survivor story.

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Mentor
Sue, Volunteer Mentor | @sepdvm | Jul 29 10:01am

Hello @jcl2018. It sounds like your medical team is erring on the side of caution, watching for late appearing radiation side effects as well as cancer recurrence. Does this bring you a feeling of relief knowing they are watching? or more stress from anxiety over scans and further radiation? I am 14 years out but with metastatic SCC.... I have had 4 mets over the years, the last in 2020. Incurable I am told, so I appreciate the twice yearly CTs watching for changes that may indicate a new met. I have not had much input at all from the medical team about long term radiation issues like carotid stenosis, fibrosis, hearing and vision. I learn about all this by research and here on Connect. As I am finally dealing with fibrosis and muscle atrophy I am left searching for help. A good discussion with your medical team about each test individually might ease your mind and help you make a decision about how frequently you want to have these scans.

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