New Diagnosis Of Scc

Hi: Last week I was diagnosed with scc in my lymph glands and at the base of my tongue.  I am scheduled to have an operation in two weeks, at Yale new Haven, for the removal of the gland and the placement of radioactive seeds into my tongue.   Can anyone tell me what to expect as it relates to my physical life ( I am a healthy 67), what the effect of the removal is on my heads and neck, what to expect from the seeds or anything else that you wish to share.  I will be most grateful for your replies.  Thank You ed Walsh

 

On 2/13/2007 Ejw00100 wrote:

Hi: Last week I was diagnosed with scc in my lymph glands and at the base of my tongue.  I am scheduled to have an operation in two weeks, at Yale new Haven, for the removal of the gland and the placement of radioactive seeds into my tongue.   Can anyone tell me what to expect as it relates to my physical life ( I am a healthy 67), what the effect of the removal is on my heads and neck, what to expect from the seeds or anything else that you wish to share.  I will be most grateful for your replies.  Thank You ed Walsh

It is almost impossible to tell you what to expect and/or what effects treatment will have on you. If you read these message boards you will find that everyone has reacted differently to their treatments. I also had Base of Tongue Cancer with lymph node involvement. (Stage 4A T2-N2-M0, moderately differentiated and with extra-capsular extention) I can only tell you what my experiences were. First off, I did not have Brachy (seed implants) I did have surgery on my neck to remove the cancerous nodes, sixty sessions of radiation, IMRT ( twice a day, five days a week for six weeks) and chemo once a week for six weeks to run concurrently with radiation, then a super dose of chemo one month later.

After my surgery, which was done in a Day Surgery Facility, I experienced a loss of nerve sensation from my jaw bone down about four inches on the right side. (the side of my surgery) They have a tendency of severing nerves when making the incision in your neck which is in one of the creases to eliminate an unsightly scar.. I had a drain installed aboved the incision which stayed in for approximately one week. To this day I still feel pressure in my neck and pain when I stretch in certain directions. I also developed Lymphedema  approximately  five months after surgery which has been with me for over a year but not as pronounced as initially.

From what I have read on treatments for Oral, Head and Neck Cancer, Brachy alone is not a viable treatment especially with node involvement but then, I could be miss-interpreting what I read. Are you going to receive external radiation also? What about Chemo? I have read about some good results using Brachy together with IMRT. With the implants are you going to require a breathing and feeding tube? Or neither?

You have a very beatable desease and being in good physical condition is extremely beneficial.  

By the way, I am sixty three at this time and was diagnosed in August of 2005, finished Radiation on Nov 17, 2005 and my last Chemo was Dec. 29,2005. I have had three PET scans since treatments ended and have been pronounced "Cancer Free" since January of 2006.

Good luck

Paul

 

 

 

 

 

 

 

 

 

 

 

 

 

Hi Paul thanks for your comments.  As I read the various reports and experiances all over the Web I am learning that everything is just a little different in just about each case.  As I understand it, the plan for me is to remove the node surgically and at the same time insert the seeds. which will stay in forever.  I am not sure of the timing but at some point after the insertion of the seeds the chemo will begin.  However, I could have it wrong.  By the way what is the Lymphoma(sp) you mention?  Ed 

He's talking about lymphedema which is not lymphoma.  Lymphedema can happen whenever your lymph system is disrupted (for instance by surgery) or you have radiation.  It may not occur immediately after surgery but you will be at risk for it.  It can be treated but it does not go away.  I got it after breast cancer surgery with 24 lymph nodes removed.  Radiation increased the swelling but treatment has brought that back down.  My arm and hand are affected and I will have to wear a compression sleeve and glove the rest of my life.

I would urge you to do some research so you know the risks and what to be aware of--not all doctors or surgeons are knowledgeable about lymphdema.  It's important to get good therapy early in lymphedema.  It will be much more manageable.  Unfortunately I did not have a good therapist at first and my lymphedema progressed to stage 2 before I did find someone who knew what she was doing.  Check out www.lymphnet.org for good info.

I wish you strength and hope as you make your way through this journey with cancer.  It's not easy but it can be done.

 

On 2/13/2007 Sewwonderfulwoman wrote:

He's talking about lymphedema which is not lymphoma.  Lymphedema can happen whenever your lymph system is disrupted (for instance by surgery) or you have radiation.  It may not occur immediately after surgery but you will be at risk for it.  It can be treated but it does not go away.  I got it after breast cancer surgery with 24 lymph nodes removed.  Radiation increased the swelling but treatment has brought that back down.  My arm and hand are affected and I will have to wear a compression sleeve and glove the rest of my life.

I would urge you to do some research so you know the risks and what to be aware of--not all doctors or surgeons are knowledgeable about lymphdema.  It's important to get good therapy early in lymphedema.  It will be much more manageable.  Unfortunately I did not have a good therapist at first and my lymphedema progressed to stage 2 before I did find someone who knew what she was doing.  Check out www.lymphnet.org for good info.

I wish you strength and hope as you make your way through this journey with cancer.  It's not easy but it can be done.

Thank you.  The complications of all this are mind bogling. Ed

 

On 2/13/2007 Ejw00100 wrote:

Hi Paul thanks for your comments.  As I read the various reports and experiances all over the Web I am learning that everything is just a little different in just about each case.  As I understand it, the plan for me is to remove the node surgically and at the same time insert the seeds. which will stay in forever.  I am not sure of the timing but at some point after the insertion of the seeds the chemo will begin.  However, I could have it wrong.  By the way what is the Lymphoma(sp) you mention?  Ed 

Hi Ed,

Lymphedema is the retention of lymph fluids in soft tissues. It usally occurs in the arms or legs but mine is in my neck. It happens because of damage to the lymphatic drainage system from certain things such as surgery to remove nodes and/or radiation. It can happen immediately or years down the line or not at all. Don't worry about it, if it does occur there are methods to control it. Your big concern right now is getting cured. Since you are going to have Brachy and are getting radiation seeds implanted at the base of your tongue I think there are some vey serious questions you should ask your doctor. The first being, Will you need a temporary Tracheostomy and/or Gastrostomy? I do not wish to scare you but, there is not much room in that area and the surgery combined with the radioactive implants could cause enough swelling to completely close off your breathing passages.  With node involvement I also believe you may be getting external beam radiation. Another cause of concern. Plus, some Chemo drugs can cause a reaction, whether normal or allergic, causing additional swelling in your throat and mouth. Ask a lot of questions and educate yourself about your cancer and treatments. As I told you before, this disease is curable, all you have to do is hang in there and be tough. Good luck and keep us posted as to your treatments and progress.

Paul 

Good evening,

Well it is here Downunder anyway. I hail from Melbourne, Australia home of the Friendly Olympics (1956) and I'm due to start radiotherapy in about 2 weeks. I'm a 44 year old who is in good general health, and has never smoked. Although I tend to drink a few more beers than I should at times.

My SCC started off being what my ENT specialist thought was an innocuous lump on my left tonsil, which was removed mid-December 2006. As usual, everything shut down over Christmas, and his rooms opened up again January 2, and he rang me to say he was surprised but the biopsy showed it was a small tumour, but don't worry, we got it all.

I wasn't surprised at all by this, as my throat was still very sore 3 weeks after the minor surgery, so he sent me for a raft of tests, CT scans, X-rays, ultrasounds and finally an aspiration of some cells from the lymph glands in my neck. On return to him on January 12, he had a look and decided the left tonsil had to go as it was still big and angry. It came off on January 29, and he told me the next morning it was tough to remove, when they usually come off pretty easily. That biopsy showed more cancer in the tonsil, as I expected, and I had my PET scan on Wednesday night.

I have a lot of support around me, and I know I will get through this. My wife has been very strong, only having one bad day at work when her emotions got the better of her, but that is understandable. She works full time and we have 2 boys aged 5 and 3, and the one thing that does concern me is that if this gets the better of me, she is going to have to raise the boys in a single parent family, which to me is not the ideal situation. Even though every third family in Australia seems to be a single parent family, I think that a stable 2 parent home is the best start you can give to children.

Now before I go any further, I am well aware that I am shooting my mouth off before I have started treatment, but the most important thing in fighting this is to be positive. To me, that is not just how to fight this, it is how to live life. If you start thinking negatively, your chances are shot almost immediately. How are you going to beat the alien invading your body if you don't believe you can? Give him the scent of doubt, and you give him a foot hold.

I am a person of faith. Not in the conventional sense, because although I know that God is there, I believe that he is our creator, not our controller, and he lets fate run its course without intervening. But I have faith in myself. I believe that I inform myself enough to make the right decisions and the right choices most of the time. Which is the best you can expect, because we are not perfect and all make mistakes. And I believe in my resoluteness to dig my heels in and fight this mongrel with all the strength and ammunition I have. I owe it to my wife and 2 boys to not take a backward step,

Dave

 

On 2/13/2007 Ejw00100 wrote:

Hi: Last week I was diagnosed with scc in my lymph glands and at the base of my tongue.  I am scheduled to have an operation in two weeks, at Yale new Haven, for the removal of the gland and the placement of radioactive seeds into my tongue.   Can anyone tell me what to expect as it relates to my physical life ( I am a healthy 67), what the effect of the removal is on my heads and neck, what to expect from the seeds or anything else that you wish to share.  I will be most grateful for your replies.  Thank You ed Walsh

Hi,

I'm sure that you have had your surgery by now and would love to hear how you're doing!

I don't know anything about the seeds. Hopefully your SCC is not as large as mine and you will not have to have a glossectomy. I hope the seeds worked for you!

I was diagnosed with SCC of the tongue in Aug.'05.  I would have done seeds or anything to save my tongue!Nothing was done prior to my surgery which was done in November, '05 at M, D. Anderson Cancer Center in Houston, TX. 3/4 of my tongue was removed, lymph nodes, and a neck disection was done. ( I had complications which resulted in two other surgeries within 10 days of the first one!)

Afterwards I had radiation treatments. I have a prosthesis for my mouth which helps with my speech.  I drink my "formula" now, blending it with yogurt, fruit, and other things to give me different tastes. (At least I can taste! ) I eat maybe 4-6 bites of real food when it's something I want and wash it down with 1/2 a bottle of water!

I am 16 months out of radiation.

I really hope you are doing well! Post a reply when you are able!  I'll be praying for you!

Anita