Stage 4 Tonsillar Cancer - new diagnosis

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Stage 4 Tonsillar Cancer - new diagnosis

by Weezy on Sun Jun 03, 2007 12:00 AM

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I am looking for support and information.

My husband of 27 years was diagnosed with left Tonsillar Pillar cancer this week.  He is 48 and the progression has been scary.  No previous health concerns prior to this, in fact, the man has never been in the hospital nor had a serious cold in the past.

He had a sore throat on Mothers Day, just sort of scratchy, no surprise there because our sons had just gotten over the flu and he thought it was his turn.  The next week the voice started changing.  He started talking like a stroke patient would, sounding like a balloon was in his throat.

Since that weekend and to now he has lost approx 35 pounds (down to a staggering 115 lbs at last weeks Dr's visit).  He was sent for a CT, PET and biopsy of the mass they could see in the back of his throat.  Diagnosis:  Stage 4 - T3, N2, M0.  The mass is "highly metabolic with a very aggressive process".  There is "involvement with adjacent cervical lymph nodes and a metastasis to other lymph nodes".  Lung, heart, liver, brain and all other organs were clear.  (Although with the way this thing is moving I am sure that may not still be true).

There is an SUV of over 16 in this area with the mass (what exactly IS this Standard Unit Value anyways?) There is also evidence that activity is on the right side and the mass (at that time) was preventing him from opening his mouth more than an 1.5 inches and cannot stick out his tongue. 

Now he can open approx 1 inch or less.  The Dr. showed me how you can see the tumor and how LARGE it is.  The mass appears near his upper back teeth and you can see it disappear back into his throat. 

We meet with the oncology team on Tuesday but I have also sent his report to the M.D. Anderson Clinic for a 2nd opinion. 

In just the past two weeks this tumor has grown double in size and has already displaced his hypopharynx. 

Enough of the medical jargon... I am looking for someone that may have experienced this type of aggressive growth.  In just the past few days (since test results) there has been more deterioration in him physically.  He is ashen grey and has lost more weight.  I will encourage the Dr. to insert a G-Tube immediately since he is already having trouble with swallowing and I do not want to wait until it is too late. His spirit is strong and confident.  He won't even take any pain meds except for Tylenol.

I am not sure what they can do for him due to the rapid growth.  I do believe in the Power of Prayer...

RE: Stage 4 Tonsillar Cancer - new diagnosis

by Cavman on Wed Aug 15, 2007 12:00 AM

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Just saw your message. I had a similar situation and am 19 months out.

How is he doing?

Ron

RE: Stage 4 Tonsillar Cancer - new diagnosis

by calyndula on Fri Sep 19, 2008 12:00 AM

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I just saw your message. My fiance was diagnosed in May with Stage 4 B tonsillar cancer, very aggressive, metastisized to the lymph node on that side of his neck (the node was the size of a baseball, maybe more). No other throat involvement, however. Organs also clear. He began an agressive regimen of chemo, radiation and surgery, and was just declared in remission two weeks ago.

The treatment was very hard and he has after-effects; he still can't eat (but has a peg tube), although he can drink and has just started being able to do juice, milk and even vanilla ice cream. He is getting his strength back daily and is joyous to be alive.

 Prayers are with you. I will check back to see how you are. Don't give up!

RE: Stage 4 Tonsillar Cancer - new diagnosis

by classylass on Sun Jun 20, 2010 12:54 AM

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I was diagnosed with left tonsillar cancer (Stage 4) which had spread to the lymph node and grew agressively.  I had a modified radical neck surgery, followed by 35 radiation treatments and 7 chemotherapy infusions.  It will be 6 yrs in Sept 2010!!  My cancer was squamous cell and I was 45 when diagnosed.  I had wonderful family & friend support.

I would suggest asking for a PEG tube placement for nourishment if he is declining in weight/strength. He needs to be in control of his healthcare as much as possible, and will learn that pain meds, nausea meds and whatever it takes to get through each day is okay.  I had to start with an anti-depressant & ended up with an Ativan & Percocet addiction, but it was okay.  It will go away when the time is right. 

Although all cancers are unique, and they all respond differently to treatments, but his mental & emotional status and pure determination to beat this thing, is most important.  It ain't easy, but life is what it is.

RE: Stage 4 Tonsillar Cancer - new diagnosis

by bpcomo on Mon Jun 28, 2010 10:41 PM

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On Jun 20, 2010 12:54 AM classylass wrote:

I was diagnosed with left tonsillar cancer (Stage 4) which had spread to the lymph node and grew agressively.  I had a modified radical neck surgery, followed by 35 radiation treatments and 7 chemotherapy infusions.  It will be 6 yrs in Sept 2010!!  My cancer was squamous cell and I was 45 when diagnosed.  I had wonderful family & friend support.

I would suggest asking for a PEG tube placement for nourishment if he is declining in weight/strength. He needs to be in control of his healthcare as much as possible, and will learn that pain meds, nausea meds and whatever it takes to get through each day is okay.  I had to start with an anti-depressant & ended up with an Ativan & Percocet addiction, but it was okay.  It will go away when the time is right. 

Although all cancers are unique, and they all respond differently to treatments, but his mental & emotional status and pure determination to beat this thing, is most important.  It ain't easy, but life is what it is.

I was diagnosed March 19 2010 with Tonsillar Carcinoma, stage three- four.. My treatment consists of 35 radiation and three chemo's. I am now on my third week after all treatment has been done. I have a CAT & PET scan scheduled for July 7th to see if they got it all.

 

The tumor is reduced in size now down to the size of a quarter on the left side of my neck. So far, so good. The treatments were pure hell. I can put it no other way. I was in and out of the hospital three times for three days, so sick I thought I was dying. I was at the end of my rope. But, I hung in there threw friends, family and Gods support and faith. Also, your attitude is very important, but in the end it test how strong you really are! The peg tube I had put in before my treatment began as I checked around and thought it was the right thing to do prior instead of waiting till I lost 75 pounds and got to sick where they would have to stop my treatment and insert the tube. Good call!

I think the only way a caretaker can get thru this is keep giving all the support you can, hide nothing from no-one. Get family, church and friends involved 100%. You will need it! All in all the treatments go pretty fast, but most of all I hated the mask they had to make for me and had to take zanex to keep from freaking out the first two weeks. I thought I was being nailed down to a table and could hardly breathe at times. They played my favorite music and gospel for me during my fifteen minutes of radiation every day, it helped!

Now I have not been able to eat or drink anything from my mouth for 10 week. My saliva was so bad it choked me when I swallowed and then soured in my stomach causing me to throw up every three hours or so for weeks! This was one of the worst side effects of all for me! I lost 35 pounds, but have gained 10 back.

Now I can't wait till I am able to eat from the mouth again and have taste buds back so I can taste food. Very mild work out as walking up and down my stairs once a day and getting as much rest as I can with feeding every three hours with two hydrocodine is working great. I do not understand why some refuse to take pain meds for the worry of getting hooked, if you don't your just prolonging your agony! You can get off the drugs, but my goodness if you’re in pain; take the meds to help give you what little peace you deserve while going through this process.

Take care and good luck to all. I have a special place in my heart now for anyone who has cancer of any kind. I always did before but now in a lot bigger light.

 

Gods speed. Fell free to contact me anytime..

bpcomo

 

RE: Stage 4 Tonsillar Cancer - new diagnosis

by bpcomo on Mon Jun 28, 2010 10:44 PM

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On Sep 19, 2008 12:00 AM calyndula wrote:

I just saw your message. My fiance was diagnosed in May with Stage 4 B tonsillar cancer, very aggressive, metastisized to the lymph node on that side of his neck (the node was the size of a baseball, maybe more). No other throat involvement, however. Organs also clear. He began an agressive regimen of chemo, radiation and surgery, and was just declared in remission two weeks ago.

The treatment was very hard and he has after-effects; he still can't eat (but has a peg tube), although he can drink and has just started being able to do juice, milk and even vanilla ice cream. He is getting his strength back daily and is joyous to be alive.

 Prayers are with you. I will check back to see how you are. Don't give up!

How lkng has it been after treatments since he can't eat from mouth? I was just wondering as I am on my third week after treatments and cannot yet.

Thanks..

bpcomo

RE: Stage 4 Tonsillar Cancer - new diagnosis

by enzobros4 on Wed Feb 15, 2012 07:04 AM

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Hi,tonsilar cancer st 4,received 3 chemo inductions with taxo/5 fu/cisplatinum.

A week after last chemo,new pet scan was allnormal.nosigns of cancer.

I'm hpv positive.

I started erbitux/weekly 8 doses and 2/21/12 i complete my last rt.

Of course needed a peg,port,etc.

Mucositis killed me,i wanted to die while having rt. I'm not ready to go.i'm 61y/0 diabetic for 1 yr.i have been in great health till then(oct 2012)

My face,lips became a mess,mouth you name it,i lost 30 lbs. Pure hell is to put itmildly.support from my wife,friends,family'god was my salvation.

I had retired a medical doctor 4 months prior.

Pet scan in 6 weeks and wait andsee.ifyou make it 5 years down the line your cure. I have 4 yrs and 8 months togo.gladfor zoloft and norco

My mistake was waiting so long for pegtube.goodluck to all. Eb4

 

RE: Stage 4 Tonsillar Cancer - new diagnosis

by bpcomo on Mon Dec 17, 2012 12:13 PM

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On Jun 28, 2010 10:44 PM bpcomo wrote:

On Sep 19, 2008 12:00 AM calyndula wrote:

I just saw your message. My fiance was diagnosed in May with Stage 4 B tonsillar cancer, very aggressive, metastisized to the lymph node on that side of his neck (the node was the size of a baseball, maybe more). No other throat involvement, however. Organs also clear. He began an agressive regimen of chemo, radiation and surgery, and was just declared in remission two weeks ago.

The treatment was very hard and he has after-effects; he still can't eat (but has a peg tube), although he can drink and has just started being able to do juice, milk and even vanilla ice cream. He is getting his strength back daily and is joyous to be alive.

 Prayers are with you. I will check back to see how you are. Don't give up!

How lkng has it been after treatments since he can't eat from mouth? I was just wondering as I am on my third week after treatments and cannot yet.

Thanks..

bpcomo

Been a year and half sense my doc told me I was free of cancer. After meeting with my doctor, calling my wife, mom and owner of the company I worked for, it was a very disappointing day to say the least. Tears, worry and more. But, I pulled thru but with allot of complications, some involved depression as my company decided to release me from my duties less than 48 hours after diagnoses. That didn't help my mental attitude at all. But, I am surviving the onslaught and trying to make the best of my life, even with the added stress of losing my job, I had to keep thinking about simply saving my life, my job, I would have to deal with them later.

God bless all, take care. Year and half out now and can eat almost anything I want except chicken is still hard along with steak, but who needs those.

I still have allot of pain in the area they radiated with some skin alterations that are visible, but in a few more years, maybe the mental anguish of losing my job will subside and as I become more full of energy it will be okay. Traumatic enough is this terrible C thing, let alone be let down by your job. But, they come second and you have to move on and try to find sense in all this madness. I been thru it all!

Bpcomo

RE: Stage 4 Tonsillar Cancer - new diagnosis

by smb22 on Thu Apr 25, 2013 03:03 AM

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I will pray for you and your husband and put you on our Church prayer list. I had Stage 4 cancer myself and it has been a long hard road but it is possible to endure with God's help!

 

RE: Stage 4 Tonsillar Cancer - new diagnosis

by rondavu on Sat Aug 24, 2013 02:47 AM

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I need help, my little sister has this cancer, she just had the operation done on her neck.  She was just told that she has this cancer and will have to go through treatments.  She feels she may not want to fight it.  She is only 54 years old and she needs to fight this.

Please email her and tell her it's worth the fight, I can't loseher.

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