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Jan Trinks's picture
Jan Trinks
Posts: 449
Joined: Apr 2009

Hi all:

I forgot to ask yesterday when I posted the good report from hubby's onc. The last time he saw the ent was in Nov. 2008 when he was diagnosed. The onc. told him yesterday he likes for his patients to check back with the ent because he likes for them to do a follow up and we have now completed one year since treatment and entering the second year. (PTL and yahoo!) So y'all know the basket case wife that I am my question is; is this the norm and considered just routine. Both the rad. onc. and reg. onc. are very pleased with hubby's progress and they have not seen anything or felt anything. Now remember the reg. onc. is 24/7 medicine. I'm assuming this is just routine since the doc said sometime within the next month or so check back with the ent. Thanks.

Jan and Charlie Trinks

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Jan,

Glad to hear your husband is doing so well, it's always encouraging to read about others who are doing so well. I see my ENT every month and he uses the scope to check my larynx for any changes. All of my doctors have said I should see him every month for a year and then every 2 months for a year. I'm not sure if this is the norm or not but I'm not going to complain, even though I hate having the scope put down through my nose, because he will be able to see any changes sooner. He has already sent me for another biopsy because of some swelling that has not changed in several months. It was just a precaution on his part because he wanted to make sure it was just scar tissue and not cancer in the larynx tissue. Hooray!!! The biopsy came back negative!!! Both of my cancers (NSCLC in my left lung and SCC laryngeal cancer) are inoperable so this monthly procedure is just a way of catching any changes in my larynx faster. As a matter of fact I am going for another scope today and am praying that all is well.

As I said, I don't know if this is the normal procedure but I feel better having my larynx looked at every month. Anything that keeps us one step of the cancer.

My best to you and your husband,
Glenna

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

I am 6 weeks post treatment and my ENT is probably the most "hands on" Doc providing my care. Scope every time as well, sometimes indirect mirror as well and using his fingers to feel the spot where the tumor was every time too. Certainly not a pleasant experience either one but as my Oncologist commented to me many months ago regarding my ENT, "I have never met anyone who hates cancer as much as (my ENT)". Can't think of a better guy to have on my team. Best to all.

Mike

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Welcome Aboard Jan,

Mt ENT is the best ever and very pro-active. He is the lead medical professional of my team of doctors. He oversees everything, chose the team (chemo and rad doctors) he is very involved.

I am 10 months post treatment for STG III Tonsil Cancer. I had three rounds (nine weeks)of Cisplaten, Taxotere and 5FU, then seven weeks of concurrent Carboplaten/ 35 rads... Like Landranger said also, my ENT is heavily involved. I see him every 6 - 8 weeks for scopes, hands on feeling of my throat, tongue areas, and etc.... It's not comfortable. He is one that uses technology as a tool, but is not dependant on it. He feels that experience and good ole, getting your hands in there and feeling around is key.

He is the one that made the initial diagnosis and he has been spot on for the entire ordeal. I don't think I'd probably be here or doing as well as I am without him.

I believe that I'll stick on this regime' for at least the first year. ENT every 6 - 8 weeks, port flush (same schedule), moved from three months to six with my chemo doctor and the same with my rads doctor.

Second year, I believe that the ENT will probably move out to every 12 - 16 weeks, with the others either remaining at six months or moving out to a year, not sure.

Third - fifth years I think everyone goes pretty much annual, other than the ENT which will probably remain at six months.

John

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

I'm 12-months after the last rad, and still on the 3-month checkup thing with all my team- ENT, Onco and Rad. ENT told me if my next PET is clean I will graduate to a 6-month visit thing, with PETs going from every 6-months, to 12-months.

As for my treatment- not sure my ENT was aware of the regime my Onco would put me thru, but do know he is aware of where I been, you know. He just handed me over to my Onco/Rad team, but it is possible he advised them on the treatment he wanted me to get. He did say, on my first post-treatment visit, that my mouth looked better than he expected to see, so he just mighta been the author of the road I travelled upon w/C&R.

Jan- good to hear from you.

kcass

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

That sounds great, my oncl and ent had me seeing each of them every 6 months and altered them at 3 months intervals, I think if he had any worry he would have said something quite different.

All the best to you both

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

How bad does the scope feel after rads?
I have been putting off going because I am not sure how much faith I have in the ENT and he is the only practice up here now, and I wasn't sure what they can see, this soon after rads?
There will be a new ENT moving up this summer and maybe that will work better. This ENT did not my think my tumor was malignant on observation but still needed removal, due to large size. It makes me wonder if he would spot any new problems.
Thanks
Stacey

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Being scoped after rads is no big deal. They have you inhale that godawful-tasting mist with the anesthetic in it, and after that it's just that obnoxious sensation of something going up your nose and down your throat. It's not painful, just uncomfortable.
Please, don't put it off.

--Jim in Delaware

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Jim is right, there is no pain just the feeling of the scope in the back of your throat. I have had this done every month (sometimes twice a month) since I finished treatment 8 months ago and I wouldn't have it any other way. The ENT can see any changes or abnormalities instead of having to wait 3 months in between scans to catch anything. My doctor kept telling me that there was swelling on the left side of my larynx (I have SCC laryngeal cancer and NSCLC in left lung). He was sure it was from the radiation but wanted to be sure the cancer hadn't invaded the tissue of my larynx so he ordered another biopsy. The biopsy came back clean so we now both have the peace of mind knowing it is just scar tissue. Both my onco doctors have said the ENT is the most important doctor now that I am through treatment.

As Jim said, please don't put this off. It is an important tool in noticing any changes.

Take care,
Glenna

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Stacey, don't put it off, it's not that bad...

Some times if I have something going on (another appointment) they do it without any of the numbing sprays. The spray usually takes a few minutes to kick in. It's still not that bad, it's just not something that you are used to having done. It's tolerable either with or without the spray. They just use a little lubricant and it sldes on in.

There isn't any lasting effect either, one he pulls the scope out you are done. My ENT also feels around with his hands (throat, neck area, tongue, inside my mouth). He know where everything was initially and how it's felt all along.

John

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