#1205 05-15-2003 10:58 AM | Joined: Aug 2002 Posts: 76 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2002 Posts: 76 | Dan saw his ENT today for his 2 month appt. Looked down his throat etc like normal, then pulled his tongue out and took the mirror/scope whatever and looked at the left side of his tongue, did this three times, used new gauze and kept cleaning his mirror, finally felt back on his tongue with one hand and the other hand on the outside under his jaw.....Dan said it scared the crap out of him. Finally he said "You are fine" Couldn't tell if he saw something, so that is why he looked 3 times and did the feely thing. Goes back in 2 months. What was he looking for?? Sherrie
Sherrie wife to Dan, Tonsil cancer survivor, Stage IV diagnosed July/2001
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#1206 05-15-2003 12:11 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | Not to worry, Sherrie. I saw both my docs yesterday and they both did similiar things, as they always do. Just being careful, I think. I am incredibly pleased that they pay so much attention to me and don't just dismiss me because I bounce in there saying how great I feel. Seriously, do not look for trouble where there is none. Enjoy today, look forward to tomorrow. If there is a problem, you will hear about it soon enough, so just let it come to you, and don't waste any time worrying in advance. Oops! Don't mean to preach. Just know that what your husband experienced is well within the bounds of ordinary and normal. Joanna | | |
#1207 05-15-2003 01:38 PM | Joined: Mar 2002 Posts: 102 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2002 Posts: 102 | Sherrie, I know just how you feel. My husband had stage IV SSC of tonsil, finished treatment 7-00, and each time we go back if they take longer than what we think is normal, or look like they might feel or see something, both our hearts drop. One time the Dr thought he felt something, called back to radiology to re-read the cat scan, then had us wait, yikes! Came back in and said, no, they don't see anything, go back to Mississippi! Needless to say in three months when it was time for our check up we were even more nervous. I guess with time this anxiety we seem to get about two weeks prior to each check up will get better, hopefully! Julie
Julie Wife to Kelly SSC tonsil Stage IV July 2000
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#1208 05-17-2003 07:08 AM | Joined: Mar 2003 Posts: 62 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Mar 2003 Posts: 62 | Julie, Sorry to say it doesn't get any easier as time goes on. However, when they do tell you that everything looks good each time you go for a check-up, you feel like you have been lifted to the top of the world. That is a wonderful feeling. David | | |
#1209 05-18-2003 05:38 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | I have found my experiences to be the same. The slightest hesitation or comment by the Doc and the imagination runs wild. I have found it better to just ask the Doc when ever that happens. It is possible it was simply that his mirror was fogging up. For the Doc it is absolutly nothing, for us it is days of worry. So if something a little unusual happens, Tell them how you feel right away.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#1210 05-18-2003 07:24 AM | Joined: Mar 2003 Posts: 251 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Mar 2003 Posts: 251 | On the subject of check-ups, I'd like to get an idea of how often other people are getting scans done...CT or MRI. My husband had a follow-up appointment with his ENT last week, did the scope, everything looked okay. But then when I asked when he'd be ordering the first post-treatment scan, he said that he won't do any for a year - and then just a lung x-ray or CT. He said that scans aren't cost effective. I know the oncologist would like to see scans, bloodwork more often. I'm a little confused. We don't want to go overboard with tests too often (and the anxiety that could be associated with them), but think there must be a happy medium.
Thanks, Anita
Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
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#1211 05-18-2003 07:51 AM | Joined: Aug 2002 Posts: 76 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2002 Posts: 76 | Hi Anita, My husband had his neck dissection on July 31, 2001, Radiation/Chemo finished up Oct 2001 and had his first Head scan ordered by his oncologist (against his ENTs wishes) in Dec 2001 His ENT said with it being so soon after surgery alot of that is scar tissue and a follow up scan that shows something will different will just be healing and not new cancer. He had his first Chest scan 5 months after Rad/Chemo in March 2002 then one August 2002 and again Feb of this year.
Good Luck Sherrie
Sherrie wife to Dan, Tonsil cancer survivor, Stage IV diagnosed July/2001
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#1212 05-18-2003 08:25 AM | Joined: Mar 2002 Posts: 188 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Mar 2002 Posts: 188 | Anita, I had quarterly CT scans and blood work drawn for my Oncologist appt for four years straight. Fifth year I finally got down to just a chest xray and blood work drawn. My ENT prefers that I seem every four months for a complete checkup. And if anything goes wrong in between those times I see my Internist. Thankfully I have been fairly healthy! I get so tired of Doc and Dentist appointmets, but still, a small price to pay for a happy life. Sincerely, Donna
SCC first time 1989, with a diagnoses of 'cancer in situ' removed lesion, no other treatments. SCC recurrence 1997 of tongue and floor of the mouth. Stage III /IV Hemmiglossectomy (removed over 60% of tongue/ floor of the mouth), free flap, modified neck, RAD and Chemo(cisplatin, 5fu) simutainously. Cancer free 6, yes, six, years!
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#1213 05-18-2003 09:38 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Hi Anita, It will be exactly 60 days tomorrow since my treatment ended. Since that time, I have had an MRI (which the Omcologist ordered), 2 blood tests, a visit with the Oncologist (2 weeks post treatment), a visit with the Head and Neck surgeon, a visit with the Radiation Oncologist and tomorrow with the Oncologist. The Head and Neck surgeon informed me he will be seeing me every 2 months for the next 2 years. No one has "scoped" me yet. The Radiation Oncologist shoved her hand down my throat, got along both sides of my tongue and it hurt like hell. She was unhappy that my thrush was not in control yet in spite of the fact I take 200mg of Diflucan a day and won't release me. I have to see her again in 6 weeks. But at least they're checking. I sure and grateful I have an HMO that covers everything.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#1214 05-18-2003 10:29 AM | Joined: Mar 2003 Posts: 251 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Mar 2003 Posts: 251 | Donna and Gary, Any idea what they look for in the blood tests? My husband has had a couple of blood tests since treatment, but only because of the pneumonia that he had 2 weeks out from treatment. He is seeing the ENT and radiation oncologist every month.
Thanks, Anita
Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
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