My Husband Was Just Diagnosed With Squamous Cell Carcinoma Of The Head And Neck Stage 4

here I am four years later and scared to death I started with head neck cancer and fought it now I am weak with Diabetes after getting pneumonia and having to deal with that' i haven't Had chemo for three months so obviously my cancer has spread I have large masses under my chin and on my neck Rock hard which are cancer has anyone had masses in the windpipe area that are giving problems or are like mine and did they radiate them because I've had radiation on them and they keep coming back anyone similar to me respond

The stomach feeding tube better known in the medical field as the “peg” was great for adding what they call the formula which added a 350 calories a feeding. I know it seems scared but it helps so much to keep some weight on. My husband went from 230 to 160 he has leveled out to 185 which is a perfect wright for him. Keep your thoughts positive and take care of yourself. Workout meditate, pray whatever you need to do to stay peaceful. We are just over two years out from surgery and he is doing well over all. We just found some nodules in his lungs and we are starting chemo on the 4th. I know this sounds crazy but we are still enjoying each day and making the best of this thing called Cancer!!! I will include you in my prayers for a great result.. Love from America!!

On Dec 26, 2017 1:17 PM kevincolangelo wrote:

here I am four years later and scared to death I started with head neck cancer and fought it now I am weak with Diabetes after getting pneumonia and having to deal with that' i haven't Had chemo for three months so obviously my cancer has spread I have large masses under my chin and on my neck Rock hard which are cancer has anyone had masses in the windpipe area that are giving problems or are like mine and did they radiate them because I've had radiation on them and they keep coming back anyone similar to me respond

Hi Kevin,

My name is Clint. I am familiar with the path you now find yourself on.

In 2013, my brother Stan contracted stage 4 throat cancer. At the 4-year mark, it returned.

Like you, the area around the primary tumor on his neck became rock hard.  I visited Stan in early June and during my stay his condition started to change dramatically. His tongue became paralyzed and his swallowing became impaired.

Stan found himself in the valley of the shadow of death. To face our own mortality is a scary proposition. Something I told Stan seemed to resonate through his fear so I will take this opportunity to pass it on to you.

Kevin, you do not have a SOUL.

You are a soul. You have a body. The body you have is temporary. It was specifically designed for life on earth. Your soul is designed for what lies beyond, because it is, like the real you, eternal.

When we are healthy, most of us, like my brother, do not concern ourselves with matters beyond this world. That is a shame, for we will spend the vast majority of our existence outside this body.

The good news is that eternal life cannot be earned. The bad news, at least in case of my brother, is that he felt guilty because he had not spent time preparing for his eternity. Instead, he made the usual excuses we often hear.

Guilt is real, and it can be paralyzing. Fortunately, Almighty GOD gave Stan time to work through his. The last correspondence from Stan convinced me of that. This is what he wrote.

“GOD is with me. He will hold my hand as I get well, or, if He wants me now, I must go. My SOUL is fine, it’s this darn body which will not cooperate.

I will see my brother again. JESUS CHRIST, not he or I, has made that possible. Stan is now in his forever home. I plan on joining him when I am called home.

I pray you beat this terrible beast we call cancer. I also hope to meet you some day, at the other end of the valley of the shadow of death. There, we will join the psalmist who ended the 23rd psalm with, “And I will dwell in the house of the LORD forever”.

GOD Bless you

 
 

Wow how are you now?

On Jun 12, 2013 1:28 AM Missyr70 wrote:

Hello Everyone:Just this past week my husband was diagnosed with squamous cell carcinoma of the head and neck stage 4. All the doctors are saying is,well we can give him radiation to relieve his symptoms. But we don't believe we can make this cancer go away completely and even if we could it may come back. They are not even mentioning chemotherapy or surgery. In my heart,I feel we need to get a second opinion. My husband is only 53 years old and I feel the doctors need to do everything they can to try to rid him of this.

My story is to long that I could write a book. My husband had HPV stage 4 Squamous Cell Carcinoma of the Head and neck too. He was diagnosed in Dec 2008 just a few weeks before Christmas. He had 35 rounds of radiation and also Chemo. They put a PEG TUBE in before he started treatments. It has been a nightmare. He had a feeding tube for 18 months went off of it was doing ok for about 5 years could eat a little. However, it is such a long story. I am sure you will read in about it on here at some point. Long story, short he has been back on the feeding tube now for almost 2 years. He will have it the rest of his life. We believe that he was givin to much radiation and it fried his throat. However, of course they would never say that. Please do get a second opinion.

Patty 

On Jun 13, 2013 1:26 AM bramble wrote:

On Jun 12, 2013 12:48 PM Missyr70 wrote:

They have not mentioned HPV,but I believe he needs to be tested.

Hi. In November 2011, I had a bilateral neck dissection with removal of the right tonsil and part of my tongue and the roof of my mouth. Reconstruction of the site was effected using muscle, blood vessels and skin from my left thigh. The primary tumour was in my tonsil (over 6cm) and, of the 65 nodes removed,2 on the left and 4 on the right were cancerous. I was given a T3N2c diagnosis. In February 2012 I had a PEG tube fitted followed by 6 1/2 weeks of radiotherapy, with 2 cisplatin treatments, one at the beginning and the other half way through RT.

Although I still cannot eat solid food, as I have trouble manoevering food in my mouth and a constriction in my oesophagus, I have had the tube removed (2 weeks ago) and eat soft foods supplemented by 2000Kcal liquid replacement nutrition. I lost about 50lb, but my weight now seems stable. It's been really tough, but I'm here and I'm claiming my life back. I rely on quite a lot of pain relief and sleep a lot, but I'm regaining my strength.

I just wanted to reassure you that, even though the treatment seems awful, even barbaric, at times, my doctors have assured me, all along, that there aim is a cure and that there is no reason why \i shouldn'tlive to my 80's. I was 47 when diagnosed.

How are you doing? My family member was diagnosed with hpv positive tonsil cancer squamous metastatized to two lymph nodes on same side as the cancer. PER SCAN RESULT PENDING. I am searching for hope and long term survivors.

On Jun 13, 2013 1:59 AM Missyr70 wrote:

Thank you so much for your reply. The doctors we have been talking to have not been as hopeful. They are just talking about easing his swallowing and relieving his pain. They have never even mentioned a cure.They "" target="_blank" rel="nofollow">http://cure.They " target="_blank" rel="nofollow">cure.They say surgery is not possible as the tumor is too large. I think we should get a second opinion as far as treatment goes.

If I were you I would definately get a second opinion. I also had same diagnosis and it was HPV.. 33 rad and 7 chemo ..Tx ended oct 2017...first scan was NED... do your research on this sight...call more doctors...god bless

On Jun 13, 2013 1:26 AM bramble wrote:

On Jun 12, 2013 12:48 PM Missyr70 wrote:

They have not mentioned HPV,but I believe he needs to be tested.

Hi. In November 2011, I had a bilateral neck dissection with removal of the right tonsil and part of my tongue and the roof of my mouth. Reconstruction of the site was effected using muscle, blood vessels and skin from my left thigh. The primary tumour was in my tonsil (over 6cm) and, of the 65 nodes removed,2 on the left and 4 on the right were cancerous. I was given a T3N2c diagnosis. In February 2012 I had a PEG tube fitted followed by 6 1/2 weeks of radiotherapy, with 2 cisplatin treatments, one at the beginning and the other half way through RT.

Although I still cannot eat solid food, as I have trouble manoevering food in my mouth and a constriction in my oesophagus, I have had the tube removed (2 weeks ago) and eat soft foods supplemented by 2000Kcal liquid replacement nutrition. I lost about 50lb, but my weight now seems stable. It's been really tough, but I'm here and I'm claiming my life back. I rely on quite a lot of pain relief and sleep a lot, but I'm regaining my strength.

I just wanted to reassure you that, even though the treatment seems awful, even barbaric, at times, my doctors have assured me, all along, that there aim is a cure and that there is no reason why \i shouldn'tlive to my 80's. I was 47 when diagnosed.

How are you doing? My family member was diagnosed with hpv positive tonsil cancer squamous metastatized to two lymph nodes on same side as the cancer. PER SCAN RESULT PENDING. I am searching for hope and long term survivors.

I was diagnosed HPV positive by biopsy into left neck lymph node on Oct 31, 2013. I felt the hard lump in Sept. Treatment of 8 weeks of radiation(M-F) and 8 rounds of chemo (Urbitux - every Friday) started around Christmas, with PEG tube inserted middle of December. 

  After four years - cancer free. PEG tube was in until a few weeks after I started eating solid food again middle of March. 

   PEG tube was a must, I was only able to drink water while the radiation fried my throat. Aloe water helped a lot! I drank it especially before and after treatments. 

   I did lose about 20 pounds and have gained it all back. 

   Any other questions, let me know. 

On Mar 13, 2018 12:15 PM Praying2018 wrote:

On Jun 13, 2013 1:26 AM bramble wrote:

On Jun 12, 2013 12:48 PM Missyr70 wrote:

They have not mentioned HPV,but I believe he needs to be tested.

Hi. In November 2011, I had a bilateral neck dissection with removal of the right tonsil and part of my tongue and the roof of my mouth. Reconstruction of the site was effected using muscle, blood vessels and skin from my left thigh. The primary tumour was in my tonsil (over 6cm) and, of the 65 nodes removed,2 on the left and 4 on the right were cancerous. I was given a T3N2c diagnosis. In February 2012 I had a PEG tube fitted followed by 6 1/2 weeks of radiotherapy, with 2 cisplatin treatments, one at the beginning and the other half way through RT.

Although I still cannot eat solid food, as I have trouble manoevering food in my mouth and a constriction in my oesophagus, I have had the tube removed (2 weeks ago) and eat soft foods supplemented by 2000Kcal liquid replacement nutrition. I lost about 50lb, but my weight now seems stable. It's been really tough, but I'm here and I'm claiming my life back. I rely on quite a lot of pain relief and sleep a lot, but I'm regaining my strength.

I just wanted to reassure you that, even though the treatment seems awful, even barbaric, at times, my doctors have assured me, all along, that there aim is a cure and that there is no reason why \i shouldn'tlive to my 80's. I was 47 when diagnosed.

How are you doing? My family member was diagnosed with hpv positive tonsil cancer squamous metastatized to two lymph nodes on same side as the cancer. PER SCAN RESULT PENDING. I am searching for hope and long term survivors.

Praying,

You will likely get more answers if you start a new post asking for information.

I was diagnosed with squamous cell carcinoma 7 years ago last fall.  Mine had metastasized to one lymph node, but they couldn't find the primary cancer.  With tonsil cancer, a met to the nodes, especially if those node tumors are not too big, is a treatable, and often curable, as long as it has not gone elsewhere. 

The standard treatment is radiation, especially after it's reached the lymph nodes, sometimes along with surgery and/or chemo.  

The radiation is quite brutal but pretty often successful at curing the cancer when the tumors are HPV related.

Lots of more specific experience here to answer questions and tell you what to expect.

Best of luck to you and your family.

Susan