new diagnosis

my husband has been a life long user of snuff.  i have tried for years to get him to quit but to no avail.  we have been marries for 22 years and have 3 boys, 22,17 and 5.  he noticed a lump in the back of his throat.  dr. immediately sent to and ent.  Ent at first said didn't look like cancer he had seen from dipping..Started him on antibiotics.. a week later he said ha less inflammation but did a biopsy on anyway.  pathology report came today and said,  tonsil biopsy,small cell non-ketatinizing squamous cell carcinoma.  immunoperoxidase stain for '(AE1AE3) reveals positive staining in the nests of tumor.  ''the cancer appears at one edge of the biopsy which apparently is in substance of the tonsil. ' We are terrified of the unknown.  he is only 40.  the ent says should be able to be treated with radiation.  he said it was caught very earlly.  will see radiation dr. next week on july 2.  should know further then.  does anyone have a familiar situation.  ent sounded very sure it could be taken of verly easily. my husband works 2 jobs as a police officer and a paramedic.  without the 2 jobs could not make ends meet. i cannot make the kind of money he makes.  he also has no insurance.  i am a complet basket case of emotions.  pleaas some feedback would greatly help!'

Sorry to hear you and your husband have to travel this road. You will find alot of help and moral support here. It is a long hard road but a well traveled road with alot of people to lend a hand give you tips or just say hang in there. I assume you have read some of the older posts here. If not do so it will give you a lot of insight into what is to come.

Good luck

Bob

 

On 6/26/2009 jordansmom wrote:

my husband has been a life long user of snuff.  i have tried for years to get him to quit but to no avail.  we have been marries for 22 years and have 3 boys, 22,17 and 5.  he noticed a lump in the back of his throat.  dr. immediately sent to and ent.  Ent at first said didn't look like cancer he had seen from dipping..Started him on antibiotics.. a week later he said ha less inflammation but did a biopsy on anyway.  pathology report came today and said,  tonsil biopsy,small cell non-ketatinizing squamous cell carcinoma.  immunoperoxidase stain for '(AE1AE3) reveals positive staining in the nests of tumor.  ''the cancer appears at one edge of the biopsy which apparently is in substance of the tonsil. ' We are terrified of the unknown.  he is only 40.  the ent says should be able to be treated with radiation.  he said it was caught very earlly.  will see radiation dr. next week on july 2.  should know further then.  does anyone have a familiar situation.  ent sounded very sure it could be taken of verly easily. my husband works 2 jobs as a police officer and a paramedic.  without the 2 jobs could not make ends meet. i cannot make the kind of money he makes.  he also has no insurance.  i am a complet basket case of emotions.  pleaas some feedback would greatly help!'

Hello,

I'm sorry to hear of your situation.  I may be able to offer some information since I am just a little over a year out of treatment myself.  My inital scans and examinations also said "no cancer" but upon biopsy it was cancer. Although I never used tobacco in anyway.  I had radiation treatments along with a neck dissection.  The cancer is gone and my followups have been fine. You will find that many people on this forum have been successfully treated, especially if they are telling you that it is in an early stage.  The treatment is hard and many things may never be exactly the same again.  But they are just details, the important thing is that  he is  alive and will be able to be there with you and the children.

 PLEASE GO BACK AS FAR AS TIME ALLOWS ON THIS MESSAGE BOARD.  READ EVERYTHING, ALL THE QUESTIONS THAT HAVE BEEN POSTED.  IT WILL PROVE SO VALUABLE. Not every side effect or problem will happen, but when something does come up you will know from reading that you are not alone and perhaps how to handle it.

My husband is a retired police officer.  In this line of work I would suggest  that your husband take all of his available leave and any type of short term disability that the department offers.  There are many people that were able to work part of the time of treatment.  But as a wife of a  police officer I know that I would never have wanted my husband to go to work  fatigued in anyway. Perhaps he can do light desk duty during the first few weeks (1-3) but after that I would personally not advise any more work until at least two months after treatment.  Your doctor may advise longer/shorter.   He should check with his Chief/Commanding Officer,  FOP and human resources department right now.  Also, he should not be closed about sharing this news with his fellow officers.  You and your family will need help... with the children,  appointments, etc., but  in that sense you are probably very fortunate since this is normally a tight knit group of people.

I did have insurance, but many people on this board do not. They will probably be better in responding to that part of your question.  My treatment center did offer alternatives for the uninsured.  And helped them do the paperwork etc.

All the best to you and your family.  Please keep posting. The people on this board are very helpful.  Best, D.

 

   Hello.  I am 1o months out of radiation/erbitux treatment for stage three tonsil cancer.  36treatments of radiation and 8 weekly infusions of the Erbitux (an experimental drug for head/neck cancers).  I am presently cancer free.  It is not an easy road to travel with many bumps along the way, at least for me  I still suffer from loss of taste, which is slowly very slowly, coming back.  And I do suffer from saliva (lack of) issues.  I need to eat very carfully and drink carefully due to narrowing of the throat.   I still have not recovered all my strength back.  I may never get back to where I was pre-cancer, but I am alive to tell you about myself.  It isn't easy,  like I said.  If the Dr. recommends a feeding tube, DO IT!  But this is a very treatable, very beatable cancer and you just have to stand up to it and do it!.  Good luck to you and yours and be brave, be tough.

 

On 6/26/2009 D1211 wrote:

 

On 6/26/2009 jordansmom wrote:

my husband has been a life long user of snuff.  i have tried for years to get him to quit but to no avail.  we have been marries for 22 years and have 3 boys, 22,17 and 5.  he noticed a lump in the back of his throat.  dr. immediately sent to and ent.  Ent at first said didn't look like cancer he had seen from dipping..Started him on antibiotics.. a week later he said ha less inflammation but did a biopsy on anyway.  pathology report came today and said,  tonsil biopsy,small cell non-ketatinizing squamous cell carcinoma.  immunoperoxidase stain for '(AE1AE3) reveals positive staining in the nests of tumor.  ''the cancer appears at one edge of the biopsy which apparently is in substance of the tonsil. ' We are terrified of the unknown.  he is only 40.  the ent says should be able to be treated with radiation.  he said it was caught very earlly.  will see radiation dr. next week on july 2.  should know further then.  does anyone have a familiar situation.  ent sounded very sure it could be taken of verly easily. my husband works 2 jobs as a police officer and a paramedic.  without the 2 jobs could not make ends meet. i cannot make the kind of money he makes.  he also has no insurance.  i am a complet basket case of emotions.  pleaas some feedback would greatly help!'

Hello,

I'm sorry to hear of your situation.  I may be able to offer some information since I am just a little over a year out of treatment myself.  My inital scans and examinations also said "no cancer" but upon biopsy it was cancer. Although I never used tobacco in anyway.  I had radiation treatments along with a neck dissection.  The cancer is gone and my followups have been fine. You will find that many people on this forum have been successfully treated, especially if they are telling you that it is in an early stage.  The treatment is hard and many things may never be exactly the same again.  But they are just details, the important thing is that  he is  alive and will be able to be there with you and the children.

 PLEASE GO BACK AS FAR AS TIME ALLOWS ON THIS MESSAGE BOARD.  READ EVERYTHING, ALL THE QUESTIONS THAT HAVE BEEN POSTED.  IT WILL PROVE SO VALUABLE. Not every side effect or problem will happen, but when something does come up you will know from reading that you are not alone and perhaps how to handle it.

My husband is a retired police officer.  In this line of work I would suggest  that your husband take all of his available leave and any type of short term disability that the department offers.  There are many people that were able to work part of the time of treatment.  But as a wife of a  police officer I know that I would never have wanted my husband to go to work  fatigued in anyway. Perhaps he can do light desk duty during the first few weeks (1-3) but after that I would personally not advise any more work until at least two months after treatment.  Your doctor may advise longer/shorter.   He should check with his Chief/Commanding Officer,  FOP and human resources department right now.  Also, he should not be closed about sharing this news with his fellow officers.  You and your family will need help... with the children,  appointments, etc., but  in that sense you are probably very fortunate since this is normally a tight knit group of people.

I did have insurance, but many people on this board do not. They will probably be better in responding to that part of your question.  My treatment center did offer alternatives for the uninsured.  And helped them do the paperwork etc.

All the best to you and your family.  Please keep posting. The people on this board are very helpful.  Best, D.

 

 

thanks so much for the info.  Fortunately my husband is the chief of police in a town of about 500 people.  he does not punch a time clock or have a set schedule.  he is on straight salary so he makes the same if he works 40 hours or 20.  I believe the town council will work with him and understand that he won't be working as many  hours as usual.  he also does mainly traffic work.  but he has the luxury of he can run radar and pull people over or not.  I think he will be okay at this job ,  its not like other law enforcement jobs.  the paramedic job is pretty much the same. it is a small county and they don't run alot of calls.  in a 24 hour shift, he might run 3 or 4 calls.  most of the time he sleeps or is on the computer anyway.  i think it is going to be more stressful on him emotional, being a man he is not going to express his emotions alot.  he is not going to be a very good patient. lol !!  he is use to having to be the strong one for me. we have had 3 miscarriages , our 5 yr  old was born 8 wks early. i almost died for preeclampsia.  then our daughter was stillborn 3 yrs. ago.  so if feel as if we have had enough thrown at us already, and now this.  i am very close to my breaking point.  i pray that i will be strong enough to help him get through this.  i just want it to be treated and never to return.  but we will find out more on wedneday.  i just want life to be normal again. please keep us in your prayers.             thanks, kime

 

On 6/27/2009 chiefswife wrote:

thanks so much for the info.  Fortunately my husband is the chief of police in a town of about 500 people.  he does not punch a time clock or have a set schedule.  he is on straight salary so he makes the same if he works 40 hours or 20.  I believe the town council will work with him and understand that he won't be working as many  hours as usual.  he also does mainly traffic work.  but he has the luxury of he can run radar and pull people over or not.  I think he will be okay at this job ,  its not like other law enforcement jobs.  the paramedic job is pretty much the same. it is a small county and they don't run alot of calls.  in a 24 hour shift, he might run 3 or 4 calls.  most of the time he sleeps or is on the computer anyway.  i think it is going to be more stressful on him emotional, being a man he is not going to express his emotions alot.  he is not going to be a very good patient. lol !!  he is use to having to be the strong one for me. we have had 3 miscarriages , our 5 yr  old was born 8 wks early. i almost died for preeclampsia.  then our daughter was stillborn 3 yrs. ago.  so if feel as if we have had enough thrown at us already, and now this.  i am very close to my breaking point.  i pray that i will be strong enough to help him get through this.  i just want it to be treated and never to return.  but we will find out more on wedneday.  i just want life to be normal again. please keep us in your prayers.             thanks, kime

Hi Kime,

You sound scared, as all of us were/are when we get this horrible news. But please know that you and your husband will make it through this. 

I am glad to hear that your husband can make adjustments to his work schedule, radiation causes a lot of fatigue. I'm personally not a bundle of energy anyway, but I needed to sleep after each treatment for a few hours.  He may do better, but just want you to be prepared. 

If you do not know already let me tell you the check list that most of us have had for radiation.

1.  A dental check will be needed, any teeth that might need to be removed or might not make it through treatment will need to be taken care of.  This is because measurements will be done very exactly for the treatments.

2.  You husband will have to have a "radiation mask" made.  It is a weird procedure but tolerable.  They measure and then make a mask for you to wear during treatments.  Mine was a  type of hardened gauze material that molded to my face. Some people have different materials.  They use the mask every treatment and kind of bolt you down to the table so that the exterior radiation beams hit exactly the right spot. The first few times it does cause some anxiety in most people, but you get used to it once you know that it really doesn't hurt.  It just makes you feel kind of closed in.  The doctor can give him something to relax if he feels he needs it.

Wanted to share this information with you so that you are prepared for the appointment.  If your husband can get to the dentist now and explain that he will be having radiation treatments it might save you some time getting started.  That way the dental part is out of the way and you can have the mask made sooner.

The doctor will give you all the instructions for follow up care each day, things like gargling with salt water/baking soda to keep mucus away.

Just wanted to give you a heads up on the first steps. Best, D.

thanks so much to everyone for information.  though not sure it makes me feel better.  i am anxious to go to the dr.. on wed.but at the same time a little nervous.  the ent didnl't say what stage he thought it was in, just that he thinks it was caught early.  he suggested fighting the feeding tube if at all possible, and knowing my husband he probably will.  i just hope there will not have to be any surgeries.  i am trying vtheery hard to be hopeful and have faith in god but i break down at least once a day.  my husband is a very hardy eater and does not like to take drugs of any kind, including pain medicine as some people have mentioned taking.  i know god performs miracle on people everyday.  alot of people are praying for him so maybe their prayers will be answered.  hopefully this can be taken care of with just some radiation.  the cat scan showed no other tumors in his neck other than what is already there. the ent actually didn't call it a tumor, he said that usually on a cat scan tumors will be highlighted and there was none of that.  he really thought it was and infection.  but luckily he didn't waste any time doing a biopsy to be sure.  please pray for him to get through this with as little side effects as possible and for me to have the strength to help him.                         

                                                                  kim 

I was a snuff user for 20 years.  HPV was found in my tonsil tumor and I do not strongly associate the Skoal with the tumor.  The HPV virus is the real culprit, as it changes the sequence of the tonsil cells and creates SCC.  Both HPV-16 and HPV-18 were in my tumor which spread to my Lymph node.  Does your husband have nodal involvement?  If he doesn't the prognosis is excellent and the radiation damage can be reduced as the areas that must be exposed will be less.  I hope he gets to avoid carrying a water bottle all of the time.  I was diagnosed at 42.  I probably had tonsil cancer only at 40.

I am also the single income earner for a family of four.  My children are 3 and 6.  My wife's care saved my life.  Your husband is fortunate to have you involved.  If you think there is a way I can help, let me know.

went to radiation oncologist on wed. 7/1.  still have many questions.  i was so nervous and my thought process kinda went out the window.  seems like a good doc,  everyone speaks highly of him.  explained things fairly well.  but i forget to ask what stage of tonsil cancer he has.  he said something about he would have his guy look at the pathology slide again and see what the other one meant by non keratinizing .  he showed us the ct scan and cannot see where it has spread to lymph noded or anything.  he did say he thought he saw a lymph node but then he could not find it again.  he says he thinks he can cure it.  i guess 35 treatment of radiation are pretty standard for this kind of cancer.  he also wants to do a couple of chemo treatments, as he says just as a preventative.  but we can't see the c hemo doc until july 9!  so let's just wait some more and give it time to spread.  we were both pretty irritated about that.  he already had his mask maide and went to the dentist and he is ready to get started and get done.  he did another ct scan but i guess we will have to wait until thursday for that too.  we just want to get on with this and get back to a somewhat normal life.  hopefully he will not have some of more serious reactions like some of the posts have stated.  he is very stubborn when it comes to meds, especially narcotics.  but i have told him he may just have to suck it up and take them if necessary.  i have started on anti depressants so i can get my head on  straight to be able to help him through this.  people keep telling me to put my faith in god and i am trying very hard to do this.  we will just have to deal with the effects of treatment and pray they will not do him too bad.  thanks for the responses. and keep us in your prayers.                                  kim