Newly Diagnoised(Help Please)

On 7/11/2007 sandy g wrote:

My husband who is 66 has just been diagnosed with Squamous cell carcinoma on the back of his tongue.

Dr's say only surgery is an option and he would loose his ability to eat.

Before he makes any decisions we would like to ask anyone out ther who has this cancer what have they done and what is the quality of life for them?

He is going for a PET scan on Friday the 13th.(bad day).

Please contact me with any advise you may have.

Thank you for your help.

Sandy,

My husband got his diagnosis yesterday 7/12/07! He has SCC of this tonsil with one node involved. Our PET is Monday followed by Oral Surgery consult on Tuesday. We will discuss treatment on Thursday 7/19. My husband is inclined to have NO treatment other than the tonsillectomy but has resigned that he will wait until the PET result. I am sorry that I can't offer you help at this stage but I can let you know that we are right there with you in this horrible disease. We live in NC. How about you guys?

On 7/13/2007 jaknju wrote:

 

On 7/11/2007 sandy g wrote:

My husband who is 66 has just been diagnosed with Squamous cell carcinoma on the back of his tongue.

Dr's say only surgery is an option and he would loose his ability to eat.

Before he makes any decisions we would like to ask anyone out ther who has this cancer what have they done and what is the quality of life for them?

He is going for a PET scan on Friday the 13th.(bad day).

Please contact me with any advise you may have.

Thank you for your help.

Sandy,

My husband got his diagnosis yesterday 7/12/07! He has SCC of this tonsil with one node involved. Our PET is Monday followed by Oral Surgery consult on Tuesday. We will discuss treatment on Thursday 7/19. My husband is inclined to have NO treatment other than the tonsillectomy but has resigned that he will wait until the PET result. I am sorry that I can't offer you help at this stage but I can let you know that we are right there with you in this horrible disease. We live in NC. How about you guys?

We got the results of the PET scan from his oncolosgist and went to see her on Friday 7-20-07. She said the only treatment would be surgery to remove about 1/2 0t 3/4 of his tongue and that he would not be able to eat or drink without a feeding tube. He doesn't want to do that. he needs to drink through his mouth. We have an appt on Thurs with the surgeon to talk to him about what quality of life he would have and what we can expect if he doesn't do surgery. We live in Houston, TX. He has already had cancer on his tonsil in 1999. So he can't have radiation again.

His dad just died on the 12th of July, my mom died on the 18th of June so this is not a very time for us.

Thank you for writing to me and I will keep you in my prayers.

You and your husband are in my thoughts and most devoted prayers.

On 7/22/2007 sandy g wrote:

 

On 7/13/2007 jaknju wrote:

 

On 7/11/2007 sandy g wrote:

My husband who is 66 has just been diagnosed with Squamous cell carcinoma on the back of his tongue.

Dr's say only surgery is an option and he would loose his ability to eat.

Before he makes any decisions we would like to ask anyone out ther who has this cancer what have they done and what is the quality of life for them?

He is going for a PET scan on Friday the 13th.(bad day).

Please contact me with any advise you may have.

Thank you for your help.

Sandy,

My husband got his diagnosis yesterday 7/12/07! He has SCC of this tonsil with one node involved. Our PET is Monday followed by Oral Surgery consult on Tuesday. We will discuss treatment on Thursday 7/19. My husband is inclined to have NO treatment other than the tonsillectomy but has resigned that he will wait until the PET result. I am sorry that I can't offer you help at this stage but I can let you know that we are right there with you in this horrible disease. We live in NC. How about you guys?

We got the results of the PET scan from his oncolosgist and went to see her on Friday 7-20-07. She said the only treatment would be surgery to remove about 1/2 0t 3/4 of his tongue and that he would not be able to eat or drink without a feeding tube. He doesn't want to do that. he needs to drink through his mouth. We have an appt on Thurs with the surgeon to talk to him about what quality of life he would have and what we can expect if he doesn't do surgery. We live in Houston, TX. He has already had cancer on his tonsil in 1999. So he can't have radiation again.

His dad just died on the 12th of July, my mom died on the 18th of June so this is not a very time for us.

Thank you for writing to me and I will keep you in my prayers.

Hi Sandy!

I was hoping to hear from you this weekend! Jack took off alone to New England on Friday morning. I think this thing is just coming too fast for him. I talked to him just a few minutes ago and he is going over to Dartmouth Medical Center tomorrow t osee if they have anything different to offer. I expect that he will head home mid week and in fact, he told me to go ahead and call the ENT here in Raleigh and try to get him back on track.

Will your husband have to have a G-tube permanently? I know that is going to affect quality of life!!!! Was everything else in the PET OK? I have to wonder about the new Radiation Therapies that irradiate only the involved tumor. Have you checked to make certain that the technology would allow either brachytherapy or implants?

I am just thankful that God has promised that He will never put more on us than we can handle. I know that we get strength from trial. 2 deaths in your immediate family would seem like a plate full without all of this. You must have a tremendous faith!

Please keep me posted and we can compare notes. It sounds as if we will be going through similar problems at the same time. It always helps to have a buddy!

Keep your chin up and you can email me direct if you would like. jsanddog@msn.com

My prayers and thoughts are with you down in Houston!

Sincerely,

Judy and Jack

Hi Sandy

 I was dianosed on June 4, 07 with SCC of the left tonsil after surgery to remove my tonsils (I had already been told that from visual observation my ENT highly suspected lymphoma or SCC).  The good news is that it has not metatisized to other organs but the recommendation of a local hospital and Cancer Treatment Center of America was radiation aided by Chemo for 7 weeks.  My first radiation and chemo treatment will be on Tues (7-23).  My first reaction to the radiation oncologist was okay but glad to hear NO mention of chemo.  Then I spoke to the medical oncologist and went into shock when he said I needed chemo also.  I went to CTCA in hopes they would say radiation only but no such luck.  I am finally resolved to the fact that I am going to have both because I want to live to see my grandchildren grow up.  I think the doctors believe they need to give us bits of info at a time but through research and asking them questions, I have found that this cancer is an agressive type of cancer and when we are fortunate enough to discover it before it metatisizes to other organs we need to do whatever necessary to eradicate it completely.  I know the next couple of months will be rough but as so any others on this site have atested to - we will make it through and this is only two months out of the rest of our life. 

FYI - as others on this site will agree - if they recommend radiation - there are various types of machines to use.  This was the topic of a great deal of research on my part - and stress - as to which one to go with.  Each hospital that had their own said their machine was the best.  I finally came to the realization that the one I wanted to go with is the TOMO radiation machine for this type of cancer.  The first hospital had trilogy radiation.  If I had lung or stomach cancer I would choose the trilogy but for a head and neck cancer I chose TOMO.  It is more precise in targeting the exact spot where cancer is present.  It also takes a CT scan prior to each radiation treatment so that the beam can be altered (even a small weight loss can alter the location of the cancer cells).  Mark M who has helped me so much on this site had treatment with the TOMO and is 2 years post treatment.  Using trilogy I was told would kill my salivary glands and a dry mouth the rest of my life was not appealing.  Saliva kills germs and something I have always taken for granted until faced w/ losing that function.  With TOMO I am given hope that my salivary glands can be avoided - or at least I can retain some. 

As someone said on this site - cancer is a word not a sentence.  I hope your husband's cancer can be removed by surgery only but if radiation is necessary - or radiation and chemo - remember this is only a short time in our life.  Strangely, I know as I get on that table for radiation and chemo the day after tomorrow, I will feel the presence of so many that have been there before me - and SURVIVED.  Good luck and God Bless (prayer helps tremendously). 

Diana  

Hi Judy, How is your husband doing? Did he get any better answeres when he went out of town?

We finally got a call from our cancer center here in Houston, MD Anderson that his Medicare supplement Insurance will ok his referral.

so next week we will be meeting with 5 doctors. This is a teaching hospital also so everybody will be looking in his mouth.

We were getting discouraged, didn't hear from anyone and his pain was getting worse. He would eat just little bits but he was still hungry. He is starving himself to death. I had a bad Thursday. I went to work and cried all day long cause I couldn't do anything for my husband and he was in such pain. They gave him morphine but he was scared to take it all day long so he took it at night when it really hurt him before he went to bed.

A hospice nurse told me to tell him he won't get addicted to it unless he lets himself get addicted. She said to take it about 30mins before he is going to eat and that should give him time to finish he food. It helped him. She also said to tuck his chin when he eats. That the food would go straght down. He said that helped when when he remembered to do it.

I have kept you and Jack in my prayers and hope he can get help.

My husband says he feels the cancer moving, I hope not to other areas.

Well take care of yourselves and I will e-mail you Monday to tell you how his dr's appt went. He had 2 on Monday, 3 on Tuesday & 1 on Wednesday. Then hopefully treatment will be the following week.

Thanks again for answering my msg.

Sandy & Stan

On 7/22/2007 jaknju wrote:

 

On 7/22/2007 sandy g wrote:

 

On 7/13/2007 jaknju wrote:

 

On 7/11/2007 sandy g wrote:

My husband who is 66 has just been diagnosed with Squamous cell carcinoma on the back of his tongue.

Dr's say only surgery is an option and he would loose his ability to eat.

Before he makes any decisions we would like to ask anyone out ther who has this cancer what have they done and what is the quality of life for them?

He is going for a PET scan on Friday the 13th.(bad day).

Please contact me with any advise you may have.

Thank you for your help.

Sandy,

My husband got his diagnosis yesterday 7/12/07! He has SCC of this tonsil with one node involved. Our PET is Monday followed by Oral Surgery consult on Tuesday. We will discuss treatment on Thursday 7/19. My husband is inclined to have NO treatment other than the tonsillectomy but has resigned that he will wait until the PET result. I am sorry that I can't offer you help at this stage but I can let you know that we are right there with you in this horrible disease. We live in NC. How about you guys?

We got the results of the PET scan from his oncolosgist and went to see her on Friday 7-20-07. She said the only treatment would be surgery to remove about 1/2 0t 3/4 of his tongue and that he would not be able to eat or drink without a feeding tube. He doesn't want to do that. he needs to drink through his mouth. We have an appt on Thurs with the surgeon to talk to him about what quality of life he would have and what we can expect if he doesn't do surgery. We live in Houston, TX. He has already had cancer on his tonsil in 1999. So he can't have radiation again.

His dad just died on the 12th of July, my mom died on the 18th of June so this is not a very time for us.

Thank you for writing to me and I will keep you in my prayers.

 

Hi Sandy!

I was hoping to hear from you this weekend! Jack took off alone to New England on Friday morning. I think this thing is just coming too fast for him. I talked to him just a few minutes ago and he is going over to Dartmouth Medical Center tomorrow t osee if they have anything different to offer. I expect that he will head home mid week and in fact, he told me to go ahead and call the ENT here in Raleigh and try to get him back on track.

Will your husband have to have a G-tube permanently? I know that is going to affect quality of life!!!! Was everything else in the PET OK? I have to wonder about the new Radiation Therapies that irradiate only the involved tumor. Have you checked to make certain that the technology would allow either brachytherapy or implants?

I am just thankful that God has promised that He will never put more on us than we can handle. I know that we get strength from trial. 2 deaths in your immediate family would seem like a plate full without all of this. You must have a tremendous faith!

Please keep me posted and we can compare notes. It sounds as if we will be going through similar problems at the same time. It always helps to have a buddy!

Keep your chin up and you can email me direct if you would like. jsanddog@msn.com

My prayers and thoughts are with you down in Houston!

Sincerely,

Judy and Jack

Hi Sandy,

Thanks again for your correspondence! There is no substitute for communication with someone who is facing the same problems. I am sorry to hear that Stan is having so much pain. Did he have the pain before his diagnosis? Jack has no pain. In fact, he is able to eat and drink as usual and has not yet lost weight. Please encourage Stan to take the pain meds so that he will be able to maintain his nutritional and hydration status.

Sitting down with the MD's to get the treatment plan is going to be difficult for both of you. I will continue my prayers for a miracle and that you and Stan will be able to accept what your future holds.

Jack did make the trip to New Hampshire but did not inquire at Dartmouth Medical Center as I think he realized how important home and family are at a time like this. When he returned, he asked for a 2nd opinion and saw Dr Brown who recommended direct laryngoscopy instead of the tonsillectomy. Due to the less invasive surgery, he has chosen to go with the laryngoscopy for biopsy of the tumor. That procedure is on the scheule for Friday, the 10th.

I am most concerned about the rapid progression of the cancer but I have learned that pushing for treatment does not work with Jack. He is having to take this diagnosis and treatment on his own time line. I am afraid that Jack is going to refuse treatment as he is so afraid of the side effects of radiation. I do hope that the radiation oncologist can help with some of his fears.

Please let me hear from you after your round with the doctors.

Judy

On 8/4/2007 jaknju wrote:

Hi Sandy,

Thanks again for your correspondence! There is no substitute for communication with someone who is facing the same problems. I am sorry to hear that Stan is having so much pain. Did he have the pain before his diagnosis? Jack has no pain. In fact, he is able to eat and drink as usual and has not yet lost weight. Please encourage Stan to take the pain meds so that he will be able to maintain his nutritional and hydration status.

Sitting down with the MD's to get the treatment plan is going to be difficult for both of you. I will continue my prayers for a miracle and that you and Stan will be able to accept what your future holds.

Jack did make the trip to New Hampshire but did not inquire at Dartmouth Medical Center as I think he realized how important home and family are at a time like this. When he returned, he asked for a 2nd opinion and saw Dr Brown who recommended direct laryngoscopy instead of the tonsillectomy. Due to the less invasive surgery, he has chosen to go with the laryngoscopy for biopsy of the tumor. That procedure is on the scheule for Friday, the 10th.

I am most concerned about the rapid progression of the cancer but I have learned that pushing for treatment does not work with Jack. He is having to take this diagnosis and treatment on his own time line. I am afraid that Jack is going to refuse treatment as he is so afraid of the side effects of radiation. I do hope that the radiation oncologist can help with some of his fears.

Please let me hear from you after your round with the doctors.

Judy

Hi my name is Anthony.

I am a physicians assistant at a heart lung center in nj. My heart goes out to all who are afflicted with squamous cell carcinoma of head and neck and specifically tongue.My mother age 75 came down with this disease.I am in the health care field and have a good knowledge base and access to the finest care in ny and nj. I want to tell all that time is important . This cancer needs to be handled aggressively and fast. Get over the shock of lifestyle changes, ie. feeding tube and/or trach tube, radiation /and chemo.

I can tell you from experience if you delay and are not aggressive with treatment you will not achieve a cure and risk recurrence. This is a dreadful disease.take a little time to gather your thoughts and support from family and friends and JESUS. NOW ACT.

After an exhausting research with fine head and neck surgeons.The list narrows to 2 locations. the reason for these choices is you want tissue sparing surgery to preserve  as much function as possible.You definitely need radiation and chemo,if you scimp or argue against it you will most likley not achieve a cure.TRUST ME. I have dedicated many many hours and countless consults with many head and neck surgeons,(no pain ,no gain. 

Dr Mark Urken    Beth Israel Hospital ny

Dr patel              Sloan Kettering        Ny

good luck and God bless you all (please  do not delay, even one week can change how much tissue they have to take out)

Anthony