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.

lynpur

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

Hi I'm new here and I'm a year over laryngeal cancer had a tumour on my voice box but still a year on I find my throat gets very very dry even tho I drink 2 litres of water a day and always just worried it's going to come back 🙃 I get 3 monthly scopes also.. does any one else suffer with a really dry throat and does the winter cold air make things worse ….

wbcgaruss

Hello, lynpur, and welcome to the CSN H&N discussion forum.

I am right with you on the dry throat, and dry mouth.

Of course, this is from a lack of saliva because of radiation damage to my saliva glands. I believe many people on here, in fact, probably a majority of people, have some sort of compromised saliva flow, which results in dry mouth and dry throat. There are severe cases, mild cases and everything in between depending on the radiation each one on here has had.

I always am sipping coffee or water or some kind of liquid to combat dry mouth or chewing gum with Xylitol that helps. At night to help with dry mouth and dry throat, I use Xylimelts. These stick to your teeth and slowly dissolve helping your saliva. You can use them anytime really but they adhere to your tooth or gum preventing you from swallowing them and getting them stuck in your throat so they are a favorite for nighttime use. Daytime you can use regular lozenges, gum, or sip your favorite liquid.

Do your best not to think of your cancer coming back or recurring. I know once we have cancer we are more aware and concerned but the odds of us getting cancer haven't changed so you are no more likely since you had cancer. Just look forward to your new lease on life and enjoy. Just keep this cancer episode in your rearview mirror and enjoy life.

Biggest Emotional Challenge Of Hearing You Have Cancer

https://www.youtube.com/watch?v=pz50YQ4N2fU

I assume by your last statement you mean you get scoped every 3 months.

I would also recommend you check out the Superthread at the top of the page there is loads of information in there with links and you will find it helpful.

Our Motto On Here Is NEGU (Never Ever Give Up)

Wishing You The Best

Take Care, God Bless

Russ