#26243 03-29-2004 01:33 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | we have a thread diversion going on here, Maran started this post thread. :rolleyes: Crystal, please start a new subject when you have a comment or question that is a new subject. You will get more attention for your question that way. Don't worry that you broke any rules
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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#26244 03-29-2004 01:57 PM | Joined: Mar 2004 Posts: 6 Member | Member Joined: Mar 2004 Posts: 6 | Sorry about the thread diversion. I am new and never did this before. Thanks for pointing it out | | |
#26245 03-29-2004 03:38 PM | Joined: Feb 2004 Posts: 45 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Feb 2004 Posts: 45 | Hi Crystal....
Best of luck with your biopsy. I see you live in Wells. Maine is my favorite place in the country. My family is from Maine originally.
Khaja
Khaja SCC Base of Tongue Stage IV. Diagnosed 12/02
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#26246 03-29-2004 08:32 PM | Joined: Mar 2004 Posts: 76 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Mar 2004 Posts: 76 | Well thank you all for the encouragement! I am unsure where to post this but..because of your advice..thanks Lynn,Mark & Bob I have successfully persuaded my Head & Neck Surgeon to get me in for a needle biopsy this Friday! I am releived;for one to be putting our minds at ease (I am a mother of three, happily partnered and not quite 40) secondly to become more educated, informed and active in this passive role I have been playing of Cancer patient. I always used to say "Don't let anything but Fear & Common sense get in your way".....since my diagnosis I won't even let Fear ever get in my way again. My thoughts & prayers go out to you all.
01/04 SCC of tongue base, T1N0M0 03/04 Partial glossectomy 04/04 Rad 12/04 Throidectomy(follicular cancer)
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#26247 04-01-2004 06:57 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 | I went to my family doctor plus others for 7 months to question a lymph node swollen the size of my thumb under my left jaw. I finally got a referral to a plastic surgeon because nobody else would remove it due to all the nerves in the neck and face. The plastic surgeon wanted and ENT workup for a second opinion and as luck had it, my wife was there, too. I asked her what she thought, she said...take it out. I said, there's your second opinion. Everything fell in place and two days later I woke up...with the darn thing still in there. It was so puss-filled and infected the doctor thought it was tuberculosis so he took some out and stitched me back up because it was hard to see where the chain really ended. I went home Friday thinking I was going to prepare myself for a year of antibiotic cocktails to treat TB. Monday I got a phone call that I had metastatic SCC in the lymph node. I have now learned that 90% of the time you have a swollen lymph node for very long, it is cancer. I lived through the treatment and 6 months out...cancer free. The ENT did not do the neck dissection because he believes my stage of cancer does not indicate an automatic neck dissection and the operation is my last defense because of the amount of radiation I had. Is a second opinion worthwhile? You bet it is and I wish I had pushed harder for 7 months than I did, even though the cancer is probably 1-2 years building in my body. I got three opinions before the treatment and one told me he uses my doctor for his second opinions and one said he could take care of it on an outpatient visit. We'll never know which one was right but I know which one I believed in!
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
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#26248 04-01-2004 02:12 PM | 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 Ed, Where was the primary?
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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#26249 04-01-2004 02:14 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2002 Posts: 541 | Ed,your story brought my memory back to yr 2001 when I discovered a swollen lymph node round the neck. It grew from the size of a pea to that of a goose egg within a very short period. In view of my healthy life habits, my ENT also suggested tuberculosis and I was prepared for 6 months' antibiotics. Of course I was wrong and the rest is history. Like most of you here, I went for second and third opinion trying to seek the best option plan. It was hard time making the final decision. I am glad today that I have made the right one. I was also worried about time delay and it was my wish that the treatment could begin the next day I was diagnosed but my oncologist said that the cancer has been in my body for a long time (could be over years) already and the waiting of 2 to 3 weeks didn't have much impact on the status. So I allowed myself to seek more opinions! Ed, my stage of cancer is T2N3M0 and I wonder why yours is a M1 if it is just a spread to the lymph node under your jaw?
Karen stage 4 tonsil cancer diagnosed in 9/01.
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.
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#26250 04-02-2004 05:01 AM | Joined: Apr 2002 Posts: 80 Likes: 1 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Apr 2002 Posts: 80 Likes: 1 | Hi I have never posted here before, I just log on and read, but this really caught my attention. I had cancer on my tongue in 2001 my ENT told me at the time it was small and I could have surgery and no treatment. We did the surgery the very next week I had swollen nodes that he told me not to worry about, but he needed to go back in my tongue and remove more. At that time I told him to please go in my neck, I just had a bad feeling about it. He did and removed 5 nodes 3 out of 5 had cancer. I did the treatments and this June will be 3 years clean. You need to also be involved in your treatment, and still wonder at what stage would the cancer in my neck have been found if I didn't put my foot down. My doctor even tells me I saved myself. I try to be proactive not reactive. At this time I have no regrets. I wish you the very best!!!
JOAN
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#26251 04-02-2004 06:23 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 | Gary,
My primary was base of tongue.
Karen,
I had two lymph nodes affected and the doctor stage as distant for whatever reason. I think it is close enough to the tongue to be "near".
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
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