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

On Jun 13, 2013 2:48 AM Missyr70 wrote:

Thank you. We go for radiation simulation on Friday and IT am definitely going to let them know that we want a doctor who is going to help us fight this cancer,not just relieve the symptoms of it. They say that too many blood vessles and organs in the neck are involved for them to do surgery. Does anyone know anything about that? What IS had forgotten to tell everyone on here is that 2 and a half years ago my husband was hit by a bus and suffers from Traumatic Brain Injury. Therefore I make all his medical decisions for him. I feel that the doctors are treating him differently because of the TBI.

Missy -

I would like to say you are wrong about them treating your husband differently but you could be absolutely correct. 

I don't know where you are located but I strongly urge you to look into getting a second opinion ASAP.  To get a second opinion from an oncologist that has your husband's medical records in front of him is far better that any of us offering you advise.  I know that CTCA will pay for the patient to fly to one of their hospitals if you don't live close enough to one - and have contracts with most of the surrounding hotels for greatly reduced rates for patients and caregivers.  They have limos that pick you up at the airport and transport you to the hospital.  If not CTCA then go to a different large cancer treatment center but get a second opinion.  I always thought doctors were doctors - and oncologist were oncologist - but we don't think about how some graduate at the top of their class and others barely squeak through.  I wanted the oncologist that graduated at the top of his/her class.  CTCA's motto is "If God didn't give you and expiration, then we won't either".     

Diana  

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.

Hello there,

First of all, very sorry you are going through this.  I went through this with my mother 4 and half years ago.  She was diagnosed with SCC stage 4 unknown primary.  She had surgery to remove one tumor and had tomotherapy for 6 weeks.  I am very happy to say she is still cancer free and doing great, eating all of the same foods she did before radiation (except pepperoni).  I am here to say this is a very treatable form of cancer and I urge you to seek a second opinion, I also urge you to look into tomotherapy, it is a much more targeted form or radiation and the side effects are much more mild than traditional radiation.

On Jun 13, 2013 2:48 AM Missyr70 wrote:

Thank you. We go for radiation simulation on Friday and IT am definitely going to let them know that we want a doctor who is going to help us fight this cancer,not just relieve the symptoms of it. They say that too many blood vessles and organs in the neck are involved for them to do surgery. Does anyone know anything about that? What IS had forgotten to tell everyone on here is that 2 and a half years ago my husband was hit by a bus and suffers from Traumatic Brain Injury. Therefore I make all his medical decisions for him. I feel that the doctors are treating him differently because of the TBI.

Missy,

One thing your husband's doctors have not told you is that radiation is THE treatment of choice for this type of cancer.  I did not have any chemo for mine, and others don't have surgery, for just the reasons you have mentioned.  Radiation is the important thing.

By all means, get another opinion, from a doctor completely separate from the first one.  It sounds as if your husband's case is complicated, so it might be your best bet to go to a major medical center in a city, even a university hospital.  You want doctors who are up on this kind of thing, people who deal with a lot of throat cancers.

If, when the results of his HPV test come back, he's found to be HPV positive, that is good news.  This virus renders tumors more receptive to radiation treatment.  And most cases in middle aged men who don't smoke are from HPV.

If in fact your husband's doctors are not giving him the respect that any patient deserves, that is just one more reason to go elsewhere.  You need to have complete faith in his doctors, as the road ahead will not be easy.  Doubting the doctors will just make things harder.

Best of luck to you both.

Susan

Hi my name is Julian,  i had exactly the same diagnosis in 2008 the tumour  was to big to have surgery so i had seven weeks of radiotherapy with chemo, it was an hideous time but i'm still here all clear,  however the side effects  will never go away.

if i can help in any way i'm here.

Kind regards.

Julian

I was diagnosed with Stage 4 SCC in the tonsil that had spread to the lymph nodes in 2005. You need to find a different doctor today and your husband will live a long time. I am 7.5 years out.

I went to the University of Michigan Hospital. They are superb at treating this cancer. There are others that are great also. It isn`t a death sentence!

Email me at rnbrown1950@aol.com and I will answer any questions you have and help in any way I can. I will help you get through this.

Ron

On Jun 13, 2013 12:48 PM Cavman wrote:

I was diagnosed with Stage 4 SCC in the tonsil that had spread to the lymph nodes in 2005. You need to find a different doctor today and your husband will live a long time. I am 7.5 years out.

I went to the University of Michigan Hospital. They are superb at treating this cancer. There are others that are great also. It isn`t a death sentence!

Email me at rnbrown1950@aol.com and I will answer any questions you have and help in any way I can. I will help you get through this.

Ron

My oncologist told me 2 years ago that tonsil cancer was a death sentence 10 years ago but now we have a chemo drug that will eradicate it.  To sit back and do nothing other than relieve pain sounds very inadequate in our day of medicine. 

Ron, as I shared in another post, there are a lot of very knowledgeable people - survivors and their caregivers - who are faithful about coming to Cancer Compass to help others who are now fighting the big "c".  We all take time out of our days to help those who are now battling cancer because there were those that did the same for us.  Medicine is continually advancing and I have actually learned from people who have fought cancer more recently than I (5 1/2 years ago) and who have also beat it.   

Diana

On Jun 13, 2013 5:41 AM Sdurnell wrote:

On Jun 13, 2013 2:48 AM Missyr70 wrote:

Thank you. We go for radiation simulation on Friday and IT am definitely going to let them know that we want a doctor who is going to help us fight this cancer,not just relieve the symptoms of it. They say that too many blood vessles and organs in the neck are involved for them to do surgery. Does anyone know anything about that? What IS had forgotten to tell everyone on here is that 2 and a half years ago my husband was hit by a bus and suffers from Traumatic Brain Injury. Therefore I make all his medical decisions for him. I feel that the doctors are treating him differently because of the TBI.

Missy,

One thing your husband's doctors have not told you is that radiation is THE treatment of choice for this type of cancer.  I did not have any chemo for mine, and others don't have surgery, for just the reasons you have mentioned.  Radiation is the important thing.

By all means, get another opinion, from a doctor completely separate from the first one.  It sounds as if your husband's case is complicated, so it might be your best bet to go to a major medical center in a city, even a university hospital.  You want doctors who are up on this kind of thing, people who deal with a lot of throat cancers.

If, when the results of his HPV test come back, he's found to be HPV positive, that is good news.  This virus renders tumors more receptive to radiation treatment.  And most cases in middle aged men who don't smoke are from HPV.

If in fact your husband's doctors are not giving him the respect that any patient deserves, that is just one more reason to go elsewhere.  You need to have complete faith in his doctors, as the road ahead will not be easy.  Doubting the doctors will just make things harder.

Best of luck to you both.

Susan

Susan,

We are finding that while tonsil cancer used to be rare it is greatly on the rise.  I don't know how accurate it is anymore to say that most men who are nonsmokers and diagnosed with it are HPV positive.  Three of us in a one block radius were diagnosed with tonsil cancer within a two year period.  Two were non-smoking men and I am a non-smoking female.  Neither male had HPV.  Our only commonality is being raised in the same area across the river from two oil refineries.  I have mentioned this to my ENT who said it would be interesting to see how many people in this area have been diagnosed with a similar type cancer.

Diana   

On Jun 13, 2013 5:09 AM JohnWi wrote:

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.

Hello there,

First of all, very sorry you are going through this.  I went through this with my mother 4 and half years ago.  She was diagnosed with SCC stage 4 unknown primary.  She had surgery to remove one tumor and had tomotherapy for 6 weeks.  I am very happy to say she is still cancer free and doing great, eating all of the same foods she did before radiation (except pepperoni).  I am here to say this is a very treatable form of cancer and I urge you to seek a second opinion, I also urge you to look into tomotherapy, it is a much more targeted form or radiation and the side effects are much more mild than traditional radiation.

John

For the first time I did not bring up TOMO radiation when replying to a recently diagnosed head and neck cancer patient or their caregiver.  As everyone on CC knows, I am a strong advocator for TOMO for tonsil cancer because it is so precise and salvages most of our salivary gland unlike IMRT; however, according to the head of radiology at Barnes in St. Louis (who have both types), TOMO is better for a non-moving organ while IMRT is better for a moving organ.  Tonsils are nonmoving organs so TOMO is much more accurate.  I didn't offer any advice here because it is unclear what areas are actually involved in her husband's cancer.  That is why it is even more important for her go for a second opinion.

Diana   

You do need to get a 2nd opinion.  My husband is 1.3 years out of treatment for stage IV tonsil/2 lymph nodes, HPV negative.   Our 1st ENT pushed surgery, our radiation oncologist and oncologist pushed radiation and chemo, of course.  We opted for daily radiation, 35 days, with 3 rounds of cisplatin.  My husband refused to have a peg tube.  I thought that this was a mistake at the time, but it worked out for him.  We did have home hydration for a couple of months, as it was too difficult to swallow to get sufficient water in.  Treatment was AWFUL, but he is cancer free at the present time.  If I'm correct, he won't be considered "cured" until he is 5 years out. 

We didn't see our original ENT after treatment began, then switched post-treatment.  If he were to begin the process again, he says he'd go to a center - one place for all doctors/decisions.

This site saved us.  Just knowing that others went through the same things, understood our fears, related to what we were going through, and survived the process was so important.

Good luck with all of the upcoming decision-making and our best to both of you. 

Mary and Jim

We went today for my husband's radiation simulation. Which I guess consisted of just a Cat Scan. At least that is what he told me. I was not allowed to go back with him. Does anyone think he should definitely be being seen by an ENT? So far all we have is a radiology oncologist,not even a regular oncologist. I would also like to know more about home hydration,since as of right now my husband is not eating. Not that he can't he just won't. I think it has a lot to do with the doctors basically telling him he has no chance.