#26636 08-13-2004 02:40 AM | Joined: Jan 2004 Posts: 64 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Jan 2004 Posts: 64 | Hi everyone,
I was hoping someone could shed some light on what my options may be at this point. I know I am jumping the gun, but that is what i do best! I finished treatment for stage 4 tonsil cancer in October 2002. I am approaching my 2 year mark however have just developed an annoying cough. Very dry, unproductive, however heavy. It is most annoying during the night and first thing in the morning. My voice has also become a little hoarse. I had a chest xray and pet in february and everything was good. I have appointments with my ent and medical oncologist this month, but i';m sure my chart has been flagged as the "neurotic patient". The problem is that i am newly pregnant, which I'm sure limits my test options. I've been driving myself crazy once again thinking the cancer is back and in my lungs. But its been close to 2 years. Could it be a metastasis, second primary or just a cold? Anything would be helpful. Thank you all so much. This is a wonderful website, and although I dont post often, it is a great support tool. Thanks again.
Kelley
SCC tonsil(left) with contralateral mets. Modified right neck disection August, 2002. 33 rads(62 gy)both sides of neck and 3 cycles cisplatin completed October 25, 2002. 34 yo at time of diagnosis
| | |
#26637 08-13-2004 05:00 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Kelley-
I too am a 2 year survivor of stage IV tonsil cancer. I get a cough every now and then and also a sore throat. I immediately think C thoughts. So far, though after a week they go away. We are still normal people and can get normal colds! So don't think the worst right off. Although I know it is hard. Hang in there and we'll pray for good test results at your next appointment. Pregnant!! That is so exciting! We will all look forward to the birth of that little one! Please keep us posted. You'll end up with many God parents!! - Love, Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
| | |
#26638 08-13-2004 06:37 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 Kelley,
congratulations on your 2 years - I am right behind you. I too struggle with these fears from time to time -I guess it's part of the "new normal" or just the big c experience in general. Statistically you only have around a 5% possibility of recurrence at the primary site so it's probably something more logical like a cold, allergies, xerostomia exacerbated by a too salty meal or even post nasal drip. Coughing will create the hoarseness. Like Kris said we still get all of that stuff too.
I think that we entitled to be a little neurotic after what we have been through! Add the hormone stuff from pregnancy and there you go. Congratulations about that as well.
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)
| | |
#26639 08-13-2004 08:22 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Hi Kelley,
We just had two red (ozone alert) days this week and I have come to realize that with each alert comes a day or two of extremely sore throat and cough. It goes away as quick as it comes but I notice every stinking second of it while it is happening. I can understand your anxiety as we all experience that with anything different. It sure seems like I am much more sensitive to the subtle "differences" in life and health now.
Congratulations on 2 years and your child on the way!
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | |
#26640 08-13-2004 08:31 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2004 Posts: 162 | Hi Kelley. The truth is, it could be anything. The key is to not worry about it until the docs tell you there's something to worry about. I think anyone who has been through this experience is entitled to be a "neurotic patient" and I think we all carry the fear of recurrence around, whether at the surface or burried deep down. And now that you have this wonderful evidence of life continuing and getting sweeter for you, the last thing you want to think about is this stuff coming back. But by the same token, every little ache, pain or cough is going cause that much more concern. Which is perfectly understandable. Since you already have appoinments scheduled with the right people, relax and take heart in the fact that you've done all you can do. I haven't reached the two year mark, but I can completely relate to your fears of recurrence. Just try to remember that worrying will not do you or your baby any good.
Congratulations on your survivorship and pregnancy!
-Brett
Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
| | |
#26641 08-13-2004 09:12 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Kelley, Congratulations on your pregnancy and two year survivorship!!!! It is wonderful news!!! Love, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
| | |
#26642 08-13-2004 09:14 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 | Hi Kelly,
Yes you might be neurotic but tell them that you'd be less so if they could prove to you that it is not a recurrence. Forget about how you appear to them, they probably didn't go through a cancer diagnosis.
Odd breathing sensations can be a side effect of stress and anxiety. Of course the more you think about it the worse it gets. I spent several uneasy hours in the emergency room at about 2 years out, because I was light-headed and dizzy with a sense of being unable to breath. I was sure it was "IT" in my lungs....well I was hyperventilating thats all. Yes I was slightly embarrased. So what? It was real to me and I had to know.
Those of us with low salivia are constantly breathing drier air than before. I am convinced that accounts for several things in my new normal.
I believe you would be able to have an MRI if you needed to.
Take care
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.
| | |
#26643 08-13-2004 03:09 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2002 Posts: 458 | We all get that neurotic patient syndrome once in a while, just made trip to the emergency room with what I though was the beginnings of a heart attack, turned out to be gas.. but that's another post.
I've been zapped more or less around the trachea a couple of times, and if the weather is dry, or there's a lot of pollution (a normal occurance here) I get the same sort of hoarse dry throat. One of those fun environmental thing. But, to get the worry out, keep the appointment and get checked over anyway.
Contgrats on the pregnancy, by the way, at least that's a GOOD adventure.
Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
| | |
#26644 08-13-2004 03:43 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2002 Posts: 541 | Kelly, the word recurrence will stay in our mind for good. I am near my 3 year mark but the experience I had in July made me scared to death already. I had some kind of neck sore very similar to what I felt when diagnosed. I thought it could be just a flu and so I went to seek help from my ENT who said everything looked good and prescribed some antibiotics and flu med. However the pain did not go away and I had no other flu or cold symptoms. What made things worse was I got a call from my oncologist telling me that the reading of the tumor marker has elevated which might be an indicator of recurrence. If it were, it would not be in the primary site or neck area. It could be a spread to lung or liver. So he referred me to a PET/CT scan in another hospital. Could you imagine how I felt when I got the report a day later? I opened it with trembling hands. I couldn't understand some of the medical jargons but the last comment stating that no metastasis was identified made me feel much relieved. Somehow the pain was still there and even my oncologist told me not to worry, I insisted on worrying. To cut the long story short, the pain gradually disappeared when I was relaxing myself in a leisure trip to Singapore and Bintan Island. Now I am back to my normal self throwing the trouble away. So I can fully understand your fear. Very natural and normal. But worrying affects your health and won't improve the situation. Things you have to do now are to be proactive, get medical consultation to deal with your problem and stay calm. Easier said than done because I was once in your shoe too! Take good care of yourself and your baby.
Karen.
Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
| | |
#26645 08-14-2004 03:19 PM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | Kelley, Congratulations on your knew baby to soon be. And on two years, that's good news. I have had a dry cough and throat ever since treatments ended. So far, no problems. Remember, its not cancer until they say it is. I know we all worry about it coming back, but no amount of worrying is going to change anything and you have your appointments coming up to check it out. It might be better to concentrate on that new life you have begun and let the worrying be done by the doctors. Take it a day at a time and handle with prayer.
Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
| | |
| Forums23 Topics18,168 Posts196,924 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
