| Joined: Jun 2007 Posts: 64 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jun 2007 Posts: 64 | i really dont know how to ask this. what happens when you lose your voice box. i go for a biospy thursday bec of a nodular on my vocal cord same one . could it be from rad. ? that was the only place the pet lite up please help
Lolita - Stage 1, no node involvement, no distant mets. 6 weeks of radiation plus 6 chemo treatments, one each week.
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | It could be from rad but more likely from your continued smoking.
If it is on your voice box, it may result in a total laryngetcomy which means you will have a permanent trach and now breath through your neck only. Voice can be restored through a TEP, electro larynx, Utlra voice if you wear dentures, or esaphageal speech. Some may lose the ability to speak altogether.
I have a TEP. I have a small slit in the back of the trach wall where they put a small prosthesis with a small hole in it. When you cover the hole in your neck, the prosthesis forces the air up the esaphagus and out of your throat and allows you to speak. Not everyone is a candidate for a TEP. Only your surgeon could answer that.
I do hope you do not have to have this surgery, but you did ask the question and hopefully I answered it. Keep us posted.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | Joined: Feb 2008 Posts: 19 Member | OP Member Joined: Feb 2008 Posts: 19 | Hi We've had two visits with two oncologists this week.
At the first visit, Craig made a decision not to get the PEG. This was because the doctor seemed to think it was 50% chance of needing it, plus he insists that Craig must eat something orally anyway to exercise the muscles and avoid excessive scar tissue forming.
However, at the second visit we were told that his diagnosis is now Stage 4a. This seems to be because the right lymph node also now has a hard lump (how long it's been there we don't know) and the left lymph node is 3.5cm. This may change the PEG decision.
Craig is to be treated with radiation daily for 6 weeks and three rounds of chemo which will be administered in hospital taking a couple of days each time. The radiation will now be on both sides of the neck. They have stated they don't want to do surgery unless it is absolutely necessary (including a neck dissection).
He still has a PET scan to go so there could be changes to the treatment plan.
I just want to say thank you for all the supportive comments and information that you giving me. It really helps to know we're not alone in this.
Marina, wife of Craig, 52 former smoker/drinker quit 9 years ago. dx Feb 2008, SCC Stage 4a Tongue with mets to left and right neck lymph nodes. Cisplatin x 3 and concurrent IMRT x 35 (scheduled to end May 1/08) We have two children, 3 and 2, and #3 is on the way. | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Having radiotherapy to both side of his neck/face will be very very tough.I would advise you to get a PEG fitted, after all you dont have to use it,but believe me you will be very grateful it is there if you do need it,particularly if he cant swallow his medication.
good luck liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Marina,
The staging as a IV should not be an indication that a Peg is warranted as his Tx would have probably been the same at less than a IV. I was a IV and I decided not to go the Peg route. My RO was like his, kinda 50/50 but deferred to my decision. It was tough but if I had to make my decision today I would still not get the Peg. Whether or not he gets the Peg the most important thing is to keep swallowing.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Feb 2007 Posts: 77 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Feb 2007 Posts: 77 | Hi Marina, You've got lots of advise here, but I thought I would add my experience. I had a modified radical neck dissection, followed by 6-1/2 weeks of radiation (5-1/2 weeks on both sides and then 1 week just on the left side where the lymph nodes were involved) with weekly cisplatin and Erbitux. My RO did not recommend a PEG, advising that if I needed it I could get it put in later. One of his nurses was more insistent that I should get it, but I elected to wait. Eating became extremely difficult after a short time (I'll say 1-2 weeks, but I don't really recall exactly). I fairly quickly developed a very simple diet that I could tolerate, consisting of an egg-beater omelet and 2 Boost Plus for each meal. I also drank a lot of water between meals. I lost maybe 5 lb total during treatment. I did use a codeine-tylenol mixture daily, as well as the magic mouthwash just before eating the eggs - these helped with the raw throat. Anyway, that's my story. Best wishes, Chris
SCC left tonsil, 2 lymph nodes, modified radical neck dissection, IMRT (both sides) completed 10/25/06, Erbitux and Cisplatin weekly, Ethyol daily
| | | | Joined: Feb 2008 Posts: 341 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Feb 2008 Posts: 341 | Hi Marina - we too are awaiting our scan and struggling with the PEG or no PEG... I don't think there are any right or wrong decisions and since there are going to be so many things we can't help/control once this all gets going I'm kind of leaning towards let's do it. If dan doesn't need it - GREAT and I intend to do evertyihng I can for that to be the case, but if he does need it I would rather already have it.
I'm praying for you and think of you often as we begin this journey with our families.
Michelle
Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO) Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer, TX IMRT 39x, cisplatin 7x (completed 5/1/08), PEG (4/22 - 7/9), No port. Currently in remission!
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Yes it's a tough decision but IF, and I stress the word IF, you can keep him swallowing, then yes he would have the best of both worlds. I didn't have the Peg so I didn't have the choice but it appears that some that do get the Peg seem to use it to their ultimate disadvantage. Believe me it is easy to use that Peg because there were many times I wished I had one but I survived without any swallowing issues so my advice leans towards not getting one.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I had the rads and Erbitux on both sides of my throat and my mouth. Maybe I'm justtoo hardheaded for it to bother me, but I haven't needed a PEG yet. Tomorrow morning at6:30 I have to be in the ready room , LOL , and sceduled for more biopsies at 8:30. Then Friday the rad implants. I do think a PEG would help me if I need it but so far can swallow, altho it's hard at times.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | PEG wasn't offered to me either time, and I agree with David that from what I have seen here I'm happy that it wasn't as it forced me to keep eating, keep swallowing. Having said that, we all do what we need to survive. Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | |
Forums23 Topics18,235 Posts197,106 Members13,293 | Most Online1,788 Jan 23rd, 2025 | | | |