#51031 12-14-2004 12:24 PM | Joined: Dec 2004 Posts: 11 Member | OP  Member
Joined: Dec 2004 Posts: 11 | I am new to this and would like to say hello to everyone and hope everyone is doing well!!
My whirlwind of events just started over Thanksgiving..And now he has been diagnosed with stage 4 oropharynx cancer(and I have been told it was SCC)(on his rt tonsil) and has made its way down into his lymph nodes in his neck that has caused an 8 cm mass. Unfortunately, yesterday they told us that it is inoperable..So now I am trying to prepare myself for the radiation and other therapy treatments..My dad is 54 and is in great health otherwise, but he has been a smoker for about 30 years, which I am sure brought all this on..
I am soo happy that I found this wonderful sight, and I am hoping that someone who has gone through this can lend some advice and what not....Sorry for rambling on, but my mind is going a mile a minute!! lol
Thanks for listening and any feedback is greatly appreciated
Amber
Pittsburgh,Pa | | |
#51032 12-14-2004 01:00 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 Amber, don't give up hope yet! I was 55 when diagnosed with a stage III/IV right tonsil cancer. They considered it inoperable based on the complexity of the surgery and subsequent quality of life issues. I had radiation and chemo and 2 years later I am doing fine. Three weeks into radiation, the tumor had completely vanished. I didn't have any lymph node involvement and that will complicate things a little bit, but they can radiate them also. In my case they did as a precautionary measure, as well as radiate the left tonsil. I haven't smoked for many years however - please encourage him to quit now. He really doesn't need any additional risk of recurrence after treatment. By the way, 25% of oral cancer patients never drank or smoked, so one can never be completely sure what the cause was. Recent studies also implicate certain viruses such as HPV or Epstein-Barr. I am sure that there are many other environmental factors as well.
Gary Allsebrook
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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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#51033 12-14-2004 01:14 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2002 Posts: 541 | Hi Amber, your dad's case is quite similar to mine except that I have never smoked in my whole life. The greatest lymph node on my neck also measured over 7 cm and was considered inoperable. I just received concurrent radiation and chemotherapy. Tumors on both tonsil and lymph nodes shrank gradually during treatment and follow up scans in 2 months after completing treatment confirmed that no cancer cells were detected and I have been in remission for 3 years already. To be in stage 4 is indeed the worst scenario but definitely not terminal. So don't worry, your dad can be as lucky as any cancer survivors here.
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.
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#51034 12-14-2004 04:19 PM | Joined: Dec 2004 Posts: 11 Member | | OP Member
Joined: Dec 2004 Posts: 11 | Thanks Gary and Karen!! I am so glad that there is hope for him...And if you don't mind me asking..did either of you have to have a feeding tube by chance? My dads tumors have already made him lose weight because it is so hard for him to swallow, and I just have a feeling that he might need one once his therapy starts...And if either of you wouldn't mind telling me the side effects that you had during treatments would be very helpful..( I know that you probably don't want to relive that time of your life) But I really just want to know what to expect since I am going to be the only one taking care of him...Thanks again to both of you!!!!
Amber | | |
#51035 12-14-2004 05:03 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Sorry guys, but I am grinning big time right now. Anyone care to answer??
Hi Amber,
No, I'm really not crazy, just like to laugh when I can. The question on feeding tubes is an oft debated one on this board. But the beauty of debate is that we get to learn from both sides and get to make an informed decision. If you do a search on feeding tubes within this site you will find tons of information. I myself would not even attempt the treatment without the tube. BUT, many have done just fine without it. Good luck to you and to your father.
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#51036 12-14-2004 06:06 PM | 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 Amber,
Sorry you had to seek us out and sorry to see you and your family going through this. But...glad to have you in the neighborhood. Spend the time to learn as much as you can now so you can help your father get through all he has to right now. He is so fortunate to have you already asking questions and trying to learn the road ahead of him.
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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#51037 12-14-2004 06:37 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 | Hi Amber, at the top of the forum page there is a painfully small search button. If you type a word or several words, you will come up with all kinds of information and discussions we have had here. Feel free to ask questions as you learn about this stuff.
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.
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#51038 12-14-2004 06:37 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 | Hi Amber, at the top of the forum page there is a painfully small search button. If you type a word or several words, you will come up with all kinds of information and discussions we have had here. Feel free to ask questions as you learn about this stuff.
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.
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#51039 12-14-2004 07:43 PM | Joined: Nov 2004 Posts: 104 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Nov 2004 Posts: 104 | Hi Amber,
Welcome to OCF, sorry you had to find us but you couldn't have found a better place to come to for information, advice and SUPPORT. You should have an orientation with your oncologist and they should give you alot of the information that you need, but I think the best is from the people here. Read all you can and don't hesitate to vent your feelings and ask your questions. Your Dad is a lucky man to have You to Love him and to Care for him. My prayers and positive thoughts are already on their way to you both.
Peace
Jack
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Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV,
Srgry 1/23/97 tonsillectomy & mod radical neck dissection,
Radiation 35 trtmnts both sides | | |
#51040 12-15-2004 01:11 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2002 Posts: 541 | Hi Amber, in response to your questions, I didn't have any feeding tube during or after treatment, although eating and drinking was a difficult task. I lost about 15 lbs without the tube and gained back the lost weight in 6 months' time. I know most patients and caregivers on this forum advocate the use of the feeding tube and there has been a lot of discussion on this issue. In Hong Kong, only about 25% of the patients need the feeding tube during treatment.It is a personal choice and you can gather more opinions before making a decision.As for major side effects, mouth/throat sore and skin burn around the neck were significant in my case. At the present moment, mouth dryness is the most frustrating effect for me. It doesn't improve and when weather is dry, I suffer more and my voice becomes more raspy. If possible, try to opt for IMRT for radiation treatment which is known to have less side effect on the patient.
Take good care of your dad and yourself. You have a tough battle to fight.
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.
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