Scared!! Diagonosed with throat cancer

On Mar 07, 2016 1:48 AM JEYEREH wrote:

Hi---This is brand new for us.  Husband diagnosed with throat cancer and the HPV.  We're just trying to put one foot in front of the other.  Saw Oncologist on Friday March 4, 2016.  He said stage 4 cancer in left tonsil and lymph nodes.  Has appt this Wednesday with ENT doctor who wants to take tonsils and lymp nodes out.  The oncologist wants chemp and radiation but ENT wants tonsils out.  What path are we suspossed to follow???  One says one things, the other says another thing!!!!  I know this is the start of a very, very long journey. We don't know anything for sure except for throat cancer stage 4. Any advice would be appreciated. thank You!!!

Good Morning,

You have fortunately come to a place where there are very caring people who have walked down the path on which you now find yourselves. I found this site while doing research on throat cancer on behalf of my brother Stan.

It was the fall of 2013. He survived the treatment regimen and is doing well, all things considered. For him, it all started with a small lump on his neck, no pain mind you, just a small lump. When he casually mentioned it to his primary doctor during a routine checkup, his world changed in an instant. Three (3) weeks later he embarked on a regimen of 35/3. That is 35 treatments of radiation and 3 treatments of chemo.

To better assist you, and speed up your learning curve, let me recommend looking up and reading all the past postings of Diana and Susan (Dlynn1210 and Sdurnell).

These are two (2) amazing people who have stuck around long after their own respective treatments so as to be there for others like you and your husband.

They were both a wealth of good information as well as inspirational to me and my brother. I have come to both respect them and love their hearts. Oh, how the whole world might benefit from a whole army of women like Diana and Susan.

I pray GOD remains close to you during this season of tribulation. I tell folks that it is not a matter of if, rather it is a matter of when each of us will enter our season of tribulation. They often look at me in disbelief, however the statistics bear out the truth. You are not alone, and hopefully you will avail yourselves of the benefits these women and others can bring your way.

Clint  

  

I am a 5 year survivor of throat cancer from the HPV virus, and understand your panic. I was OK on the table with the mask until about halfway into the 7 weeks of radiation. Up until that point I just tried to concentrate on the music and "space" out. When I had trouble ativan really helped me. The treatments are painless but by that time I was having throat pain and anxiety.  I would take half of one before the radiation and sometimes fell asleep during the session! So maybe up your dose a bit?

Are you having a peg tube for feeding? I was on the thin side so I had no choice and am glad I did. With the tube I only lost 14 pounds and got the tube out 2.5 months after treatmentmalthough I still drank a lot of ensure..

It is a grueling treatment regimen (7 weeks of radiation, 3 chemo treatments) and it has taken me a long time to really feel like myself again but I am doing great and you will too. Best of luck.

Yes, my husband started with a small lump on the side of his neck and his primary gave him amoxiliccin for the 1st 30 days.  We have a appointment with the ENT for tomorrow at 4:30.  The cancer doctor is in agreement with the ENT for him to take out the tonsils and the lymph nodes as that is where the PET scan showed the cancer was. The Cancer doctor did say that the cancer was contained there.  I totally agree that you can't have a testimoney without a test.  God didn't take us into this without providing a way to get out of this.  My husband told his employer this afternoon and the boss was a little snarly and said "Well I paid you for the 4 days you were in Intensive Care"!!!  With everything that is going on and then to worry about the job situation is over whelming.  My husbands' employer only employs about 12 people so if he were to let my husband go we would not have the benefit of being offered COBRA insurance.  The Bible says that his Grace is sufficient for us.  I am so glad I came across this site so I can help my husband thru this difficult time.  Are any of you aware of the possible down time from having this sort of surgery.  Thank You.  Have a Great Day!!

On Mar 07, 2016 7:31 PM nanaoftwo wrote:

I am a 5 year survivor of throat cancer from the HPV virus, and understand your panic. I was OK on the table with the mask until about halfway into the 7 weeks of radiation. Up until that point I just tried to concentrate on the music and "space" out. When I had trouble ativan really helped me. The treatments are painless but by that time I was having throat pain and anxiety.  I would take half of one before the radiation and sometimes fell asleep during the session! So maybe up your dose a bit?

Are you having a peg tube for feeding? I was on the thin side so I had no choice and am glad I did. With the tube I only lost 14 pounds and got the tube out 2.5 months after treatmentmalthough I still drank a lot of ensure..

It is a grueling treatment regimen (7 weeks of radiation, 3 chemo treatments) and it has taken me a long time to really feel like myself again but I am doing great and you will too. Best of luck.

We know pretty much nothing until tomorrow.  He is suspossed to see his ENT tomorrow.  The oncologist seems to feel that once the cancerous tonsil and lymph nodes are removed he would get radiation, but perhaps no chemo.  He is also suspossed to get a port put in this coming Wednesday.  I'm not real clear as to why he would be get the port if the Oncologist says he would only need radiation.  I thought I would be dealing with a nurse natigator and only one person but it seems now I've talked to several.  Should he put off getting the port???? for Now???

On Mar 07, 2016 4:11 AM Cardoza33 wrote:

Hello,

I am sorry you are going through this.  I was diagnosed with the same as your husband in November.  I am 5 weeks out of radiation and chemo and dealing with all the issues you will learn about it due time.  Regarding you questions, this is a choice that most people face.  I was told by the ENT to do surgery and the onc/rad to do that first.  I was told that even if I had surgery I would still have radiation and chemo.  If I did radiation and chemo first I may avoid surgery all together. I chose to do that. I will have a scan in May and see what happens.  I was not able to get a real benefit from doing one way over the other to be honest.  I struggled with this decision for a while.  I ended up just weighing all the information and deciding what I thought was best for me.  In the end, you need to feel comfortable with your treatment people and trust in your decision.  Good luck.  

Tony

That's what the problem is.  The oncologist said firmly on Friday that he would do the radiation/chemo first and then he called today and said that he had conferred with the ENT and said that they will remove the cancerous tonsil and cancerous lymph nodes and then do radiation and chemo.  I'm hoping that when we go to our appointment tomorrow that there will be clarity from both their sides.  He is also suspossed to have a port put in this coming Wednesday.  Should he still have the port put in, even if he is having surgey next Monday or should he wait until he recovers from the tonsil/lymph node surgery?? TIA!!!

On Mar 07, 2016 9:02 PM JEYEREH wrote:

On Mar 07, 2016 4:11 AM Cardoza33 wrote:

Hello,

I am sorry you are going through this.  I was diagnosed with the same as your husband in November.  I am 5 weeks out of radiation and chemo and dealing with all the issues you will learn about it due time.  Regarding you questions, this is a choice that most people face.  I was told by the ENT to do surgery and the onc/rad to do that first.  I was told that even if I had surgery I would still have radiation and chemo.  If I did radiation and chemo first I may avoid surgery all together. I chose to do that. I will have a scan in May and see what happens.  I was not able to get a real benefit from doing one way over the other to be honest.  I struggled with this decision for a while.  I ended up just weighing all the information and deciding what I thought was best for me.  In the end, you need to feel comfortable with your treatment people and trust in your decision.  Good luck.  

Tony

That's what the problem is.  The oncologist said firmly on Friday that he would do the radiation/chemo first and then he called today and said that he had conferred with the ENT and said that they will remove the cancerous tonsil and cancerous lymph nodes and then do radiation and chemo.  I'm hoping that when we go to our appointment tomorrow that there will be clarity from both their sides.  He is also suspossed to have a port put in this coming Wednesday.  Should he still have the port put in, even if he is having surgey next Monday or should he wait until he recovers from the tonsil/lymph node surgery?? TIA!!!

So which one did you have done first?  and why?  How long was the recovery period from the surgery.  What kind of surgery did you have??  TIA!!!

On Mar 07, 2016 9:03 PM JEYEREH wrote:

On Mar 07, 2016 9:02 PM JEYEREH wrote:

On Mar 07, 2016 4:11 AM Cardoza33 wrote:

Hello,

I am sorry you are going through this.  I was diagnosed with the same as your husband in November.  I am 5 weeks out of radiation and chemo and dealing with all the issues you will learn about it due time.  Regarding you questions, this is a choice that most people face.  I was told by the ENT to do surgery and the onc/rad to do that first.  I was told that even if I had surgery I would still have radiation and chemo.  If I did radiation and chemo first I may avoid surgery all together. I chose to do that. I will have a scan in May and see what happens.  I was not able to get a real benefit from doing one way over the other to be honest.  I struggled with this decision for a while.  I ended up just weighing all the information and deciding what I thought was best for me.  In the end, you need to feel comfortable with your treatment people and trust in your decision.  Good luck.  

Tony

That's what the problem is.  The oncologist said firmly on Friday that he would do the radiation/chemo first and then he called today and said that he had conferred with the ENT and said that they will remove the cancerous tonsil and cancerous lymph nodes and then do radiation and chemo.  I'm hoping that when we go to our appointment tomorrow that there will be clarity from both their sides.  He is also suspossed to have a port put in this coming Wednesday.  Should he still have the port put in, even if he is having surgey next Monday or should he wait until he recovers from the tonsil/lymph node surgery?? TIA!!!

So which one did you have done first?  and why?  How long was the recovery period from the surgery.  What kind of surgery did you have??  TIA!!!

I had left tonsil cancer and they removed my tonsils five days after I first saw an ENT.  I was diagnosed with cancer before leaving the operating room.  While it isn't a picnic to have our tonsils removed as adults, it just takes a little longer - approximately two weeks.  After completing any dental work needed (becomes more difficult after treatment) I had radiation and chemo.  I am 8 1/2 years post treatment and while I have some after effects from the radiation, I am doing well.

Diana

On Mar 07, 2016 8:25 PM JEYEREH wrote:

Yes, my husband started with a small lump on the side of his neck and his primary gave him amoxiliccin for the 1st 30 days.  We have a appointment with the ENT for tomorrow at 4:30.  The cancer doctor is in agreement with the ENT for him to take out the tonsils and the lymph nodes as that is where the PET scan showed the cancer was. The Cancer doctor did say that the cancer was contained there.  I totally agree that you can't have a testimoney without a test.  God didn't take us into this without providing a way to get out of this.  My husband told his employer this afternoon and the boss was a little snarly and said "Well I paid you for the 4 days you were in Intensive Care"!!!  With everything that is going on and then to worry about the job situation is over whelming.  My husbands' employer only employs about 12 people so if he were to let my husband go we would not have the benefit of being offered COBRA insurance.  The Bible says that his Grace is sufficient for us.  I am so glad I came across this site so I can help my husband thru this difficult time.  Are any of you aware of the possible down time from having this sort of surgery.  Thank You.  Have a Great Day!!

Hello,

I am 13 months post treatment for stage 4 tonsil cancer from HPV. I had a left radical neck dissection (removed my tonsil and 41 lymphnodes ) before treatment. The incision looked worse than the pain. However, the throat was painful upon swallowing. The pain lasted 10 days exactly, even ice cream was painful to eat. 

I did have 38 radiation treatments and 3 rounds of chemo after surgery. However, because of the surgery I only needed radiation on the left at a lower dose and no radiation on the right. That was the best news ever. 

If there are any questions or anything I can help witb, don't hesitate to ask.  

Stay strong!

Dawn 

As is evident by the long running blogs on CC, there are many tonsil cancer survivors on Cancer Compass - some like myself, long term (8 1/2 yrs).  Anyone with a question can be reassured that there is someone here 24/7 to answer questions. 

For instance, the left side of my face swelled up and the visiting nurse freaked out fearing it would interfere with my breathing.  She was ready to call an ambulance to transport me to the hospital (hubby was on a business trip but due back in hours).  I went on Cancer Compass and asked if anyone had experienced this - to which a quick reply was "Yes, it is due to radiation".  I chose to forego the ambulance ride and waited for my husband to take me to the hospital.

I did want to clarify something in Dawn's post.  Some newly diagnosed might wrongly interpret the words "tonsil cancer from HPV" as meaning the cancer is caused by HPV.  The two are separate even though a few are also diagnosed with HPV which supposedly is a positive in treating tonsil cancer.  I am not HPV positive so can only repeat what I have heard from others on CC or read! 

Also, tonsil cancer is found in only one side which means we only receive radiation on one side.  Many of us are scheduled for 5-6 treatments (one a week) but most make it to 3 or 4 which has seen positive results.  Once you receive the last chemo treatment, that is as bad as it gets; however, the effects of radiation continue to worsen for approximately 6-8 weeks (varies with patients) post treatment.  I also had fragmented radiation which meant that they divided the daily dose into two treatments - morning and afternoon - to lessen the side effects.  I was treated at CTCA and this is not common at many other cancer centers. 

The important thing to remember, and what is great about CC, is that not all patients experience the identical effects but there are so many tonsil cancer survivors here that you most likely will find someone who has experienced any issue.  I know it helped me hearing that the swelling was not something I should worry about.   

Diana

On Mar 07, 2016 1:48 AM JEYEREH wrote:

Hi---This is brand new for us.  Husband diagnosed with throat cancer and the HPV.  We're just trying to put one foot in front of the other.  Saw Oncologist on Friday March 4, 2016.  He said stage 4 cancer in left tonsil and lymph nodes.  Has appt this Wednesday with ENT doctor who wants to take tonsils and lymp nodes out.  The oncologist wants chemp and radiation but ENT wants tonsils out.  What path are we suspossed to follow???  One says one things, the other says another thing!!!!  I know this is the start of a very, very long journey. We don't know anything for sure except for throat cancer stage 4. Any advice would be appreciated. thank You!!!

Hi, Sorry to hear of your diagnosis. I have had both chem/radiation and a left neck dissection. If I were you I would go with the chemo/ radiation first and if that doesn't kill it all then the neck dissection. Cancer is a beast! The treatments are harsh. Don't let anyone sugar coat it. I too had stage 4, started on tonsils went to base of tongue and involved a lymph node. My ENT put me in touch with the oncologist. I did 6 rounds of chemo and 36 radiations. If my lymph node had acted like everyone else's I would not have needed the neck dissection. I am 1 year and 3 months out of treatment and a year and 1 month from my neck surgery. Arm yourself with as much information as you can. Each of us are individuals and we all handle our treatments differently. When you are done with treatment, your mind can become your biggest obstacle. I went with a peg tube and still lost 20 lbs. I have undergone speech and physical therapy due to the surgery. Please don't bury your head in the sand, prepare for worse case scenarios and when they don't happen it will be wonderful. You are fighting one if the biggest battles if your life. Arm yourself with knowledge and slay the beast that stands before you. I send love and warmth your way. Prayers for you and your family. Glory be to God! Cheyenne