Follow up of stage 4a laryngeal cancer

cdwyer05

hi! I am new to this site . I have a question regarding follow up care. My husband has stage 4A Supraglottic cancer. We had first 3 month appt with pet scan and scope yesterday and all looks good. At first the oncologist said fu care would be ct and scope every three months for a while . Then we saw ent and he said scope in 3 months but didn’t think needs ct follow ups were needed. Oncologist has agreed and nOw they will only do scope at follow ups and no scans. The cancer was in 2 lymph nodes originally so I’m a bit concerned at no scans as part of follow up care. Has anyone else just had scopes for follow up care? This worries me that a possible metastasis could be missed.

wbcgaruss

Welcome, cdwyer05, to the CSN Head and Neck discussion forum.

You don't mention anything about the treatment your husband received so I will just ASSume he may have had surgery on his lymph nodes which would be a radical neck dissection and then the standard 35 radiation treatments with chemotherapy beginning, middle, and at the end of treatment. Although he may not have had any surgery, just radiation and chemo.

From reading about your husband's cancer, supraglottic cancer, it is throat cancer in the upper part of the larynx.

I had throat cancer also.

Immediately post-treatment I don't think they focus on scans so much because the treatment you get almost surely eradicates the cancer so they already know a scan will show nothing.

Immediately following my treatment I went in to see my ENT once a month and he checked me over and did the scope up the nose each time he could see the condition I was in internally and any improvements each month. Of course, I can imagine what it looked like inside considering what my neck looked like outside quite red and sunburned looking. Each month for the first 2 months for sure and possibly 3 months he just said everything looks as it should in relation to the treatment I just received which I figure is red and swollen and irritated inside because at this point I couldn't get anything by line food or drink at all it was swollen shut because of the radiation. Everything was by feeding tube, food, hydration, meds, etc. Also, for the first 3 months, he would say no improvement yet. It was probably the 4th month he finally noticed an improvement in the looks of things inside and the swelling going down. So I believe for the first year after treatments I saw him once a month. This would be on a case-by-case basis each of us is different. Now later in the year following treatment, he may have gone to a 3 month period in between of seeing me.

So I say all that to say this and you will find in many cases of Head and Neck cancer protocol this is done.

Post-treatment your ENT should see you at least once a month

As you improve he will then extend it to 3 months and eventually 6 months and by the time you hit the 2-year period he will then see you once a year.

As far as scans go there are many on here that have gotten scans after 3 months possibly CT Scans alone or with contrast or have received a PET Scan.

The comments I have seen on this board is the doctors many times order a 3-month scan but then they see things showing on the scan which are not clear but indicate possible cancer or at the least are questionable as to if something is there but will not show up on a later scan and they call these things false positives. So too early a scan can have issues.

So ENT follow up every month for a while till he extends it longer in between to 3 monts, 6 months, etc.

Scans should be at 6 months or if your doctor wants one sooner at 3 months that is fine also to be sure.

I would say that once over the initial period you would get a CT Scan with contrast every 6 months and at some point, your doctor will throw a PET Scan in there.

Then by the time you get to the 2-year post-treatment period, it will be a once-a-year CT scan with or without contrast of the head and neck area and the chest because if H&N cancer metastasizes it usually goes to the lungs.

I hope this helps a bit, please keep us updated and welcome to the club no one wants to be in.

Our motto here is (NEGU) Never Ever Give Up

Wishing You The Very Best

Take Care, God Bless,

Russ

I highly recommend you check out the "Superthread" at the top of the Head and Neck page as it is loaded with links and info to help you.

cdwyer05

thanks for your response. He did 25 weeks of radiation and 2 chemo rounds , no surgery. He finished that in May and has just had his 3 month PET and scope which were clear. As of right now ent and radiation oncologist are suggesting just the ent scope every 3 months. This is where we are concerned, docs are saying scans are not necessary and should be fine with just that? . He had Mets in 2 local lymph nodes which they did not remove , just Ihit them with Radiation and chemo. Nodes are also clear now . I just thought with stage 4 especially they would at least do CT’s at first along with scopes every 3 months for a bit . We see medical onc who did the chemo Tuesday and will discuss further with him.

Thanks again!

Chris

goffrey

https://csn.cancer.org/discussion/comment/1717742#Comment_1717742

I also had cancer that had spread to my lymph nodes. No surgery just chemo and radiation. They scope every 3 months for me and a PET scan every year.