Scared!! Diagonosed with throat cancer

lol  I couldn't do spicy before.  Can't now still.  burns my tongue too much.  Also, if I eat too much or certain things, I get a bleeding throat, kinda like a bloody nose.  Then, I cough up fresh blood.  After I told my drs about this, the next scope the ENT looked closer and said he did see the blood, and the blood vessels were very close to the surface, so were most likely irritated by whatever I was eating.  He and my oncologiest agreed that I seem to KNOW how to prevent this and can listen to my body.  The other thing I've found is that lettuce as in the loose leaf kind sticks to the side of my throat, as do pills at times.  I often have to cough them back up n try again.  

I'm also still choking quite often. . . I'm over a year out.

So glad for you that you can eat all that stuff.  

On Mar 08, 2016 5:06 AM Dsunryz wrote:

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 

Dawn---if you had to do it all over again would you do the chemo and the radiation first?  Thank You!!!  Husband has to have a triple endoscopy done on Monday, both of us are on triple overload of information as well as anxiety and stress. Thank you for answering.

On Mar 08, 2016 4:28 PM CheyenneMoon wrote:

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

WE saw the ENT yesterday and he now wants to do a Triple endoscopy this coming Monday.  Husband only had regular endoscopy done while he was in the hospital.  Husband is leaning towards the surgery first but we still do not know much of anything.  The waiting is horrible!!!   Cancer is at base of tonque and left tonsil and in lymph node.  So now we wait until the results of the triple endoscopy come back and then consult with the ENT after that.  He mentioned something about robotic surgery but won't know if my husband is a candidate for that until after the triple endoscopy.  

I'm a bit over a year out of treatment.  I wasn't given an option, but here is my experience.  I went thru 35 radiation and 3 chemo (planned 5, but settled on the 3 - my Dr said she was done beating me up).   THen, a 3 mo scan was clear so no surgery after.  

The way I see it, you will need to go thru radiation and chemo anyway, why do the surgery first?  I suppose it could be a lower dosage after the surgery?  My ENT told me it took a while to recover from the surgery delaying the radiation treatment.  And, the chance of spreading was greater then.  Plus, the masses would have required more to be taken out, plus what the radiation kills.  The way it was explained to me radiation IS surgery.  It kills the cells inside the tumor a bit at a time on each treatment.  It targets only the masses and leaves the rest other than the lower dose that goes thru whatever it needs to to get to the mass that does the other damage.

Just thinking out loud.  but, perhaps this will give you some questions to ask the drs at least.  Wish you the best and praying for you guys.  

On Mar 09, 2016 3:24 PM hisprincesstoo wrote:

I'm a bit over a year out of treatment.  I wasn't given an option, but here is my experience.  I went thru 35 radiation and 3 chemo (planned 5, but settled on the 3 - my Dr said she was done beating me up).   THen, a 3 mo scan was clear so no surgery after.  

The way I see it, you will need to go thru radiation and chemo anyway, why do the surgery first?  I suppose it could be a lower dosage after the surgery?  My ENT told me it took a while to recover from the surgery delaying the radiation treatment.  And, the chance of spreading was greater then.  Plus, the masses would have required more to be taken out, plus what the radiation kills.  The way it was explained to me radiation IS surgery.  It kills the cells inside the tumor a bit at a time on each treatment.  It targets only the masses and leaves the rest other than the lower dose that goes thru whatever it needs to to get to the mass that does the other damage.

Just thinking out loud.  but, perhaps this will give you some questions to ask the drs at least.  Wish you the best and praying for you guys.  

Hi and thank you for your input.  Yesterday we saw the ENT who now says he'll do a triple endoscopy this coming Monday that will tell him pretty much everything he needs to know, I THINK!!!!  We are on information OVERLOAD and really wish that the Oncologist and ENT would get on the same page.  Hubby was scheduled to get a medi port put in today but the ENT said "why do that???---why put the cart before the horse".  We left not really knowing anymore than what we knew before hand.  I'm thinking, perhaps, that after the triple endoscopy they will have the COMPLETE PICTURE.  He already has had a regular endoscopy and a PET Scan.  Why they didn't do a triple endoscopy when they did the regular one is beyond my thinking.  The waiting is HORRIBLE.  Husband wants to start SOMETHING right away.  I just don't really know what to do now!!!!  All in all, I think, that doing the triple endscopy will shed some more light on the subject?????  

yes, the waiting is horrible.  When I got to my decision point, then, it seemed like it took forever to get it moving.  before I let them know I was still making my decision, they were moving at record speed!  

I got to the point that I quit looking for information, and just released it.  The overwhelm was getting tooo much to handle.  I concentrated then on tasks, and how I was going to survive.  One of the things I worked on then was a CD of worship music. I picked out relaxing healing songs to listen to so I could keep calm.  Today even I still listen to it.  I also did my living will n stuff including a power of attorney for my son who became my primary caregiver, and involved in all decisions.  Perhaps you can discuss such things so you will be that primary caregiver.  You will also need a support team put together to help you thru as the primary caregiver.

Lord be with you both.

On Mar 09, 2016 4:14 PM hisprincesstoo wrote:

yes, the waiting is horrible.  When I got to my decision point, then, it seemed like it took forever to get it moving.  before I let them know I was still making my decision, they were moving at record speed!  

I got to the point that I quit looking for information, and just released it.  The overwhelm was getting tooo much to handle.  I concentrated then on tasks, and how I was going to survive.  One of the things I worked on then was a CD of worship music. I picked out relaxing healing songs to listen to so I could keep calm.  Today even I still listen to it.  I also did my living will n stuff including a power of attorney for my son who became my primary caregiver, and involved in all decisions.  Perhaps you can discuss such things so you will be that primary caregiver.  You will also need a support team put together to help you thru as the primary caregiver.

Lord be with you both.

Thank you for answering so quickly.  My husband never has and probably never will discuss the (bad stuff), (death-funeral-burial) things like that.  I'm not sure if that is what you are talking about.  Through the years when I broach the subject he says he doesn't want to discuss it.  I bought our cemetary plots years ago and he knows about that.  I guess some people just don't want to discuss it.  It puts a heavy burden on me for sure.  He has adult children from another marriage who add many, many gray hairs to my hear.  Although we have been married for 15 years I am treated and condemned as the wicked stepmother.  Thankfully, the daughter lives out of state and has her own family.  Young people these days just don't get it.  He has a daughter and a son and they think they know everything, all young people think they know more than the doctors and they question me in every way, they have made themselves comfortable with disrespecting me.  Perhaps things will change I'm not sure.  I will be the primary care giver of my husband and do anything and everything to make sure he is ok.  We are people of faith and I will lean on that every minute of our walk.  God brought us to this and God will walk with us all the way.  My husband looks to me for EVERYTHING, the appointments, the prescriptions, the correspondence, everything.  I'm praying that the Lord keep my mouth shut when it comes to his kids.  Perhaps this will bring everyone together.  I don't work, my husband afforded me the luxury of not having to work, so like just the other day, one family member asked him if I was going to go back to work.  I think they need to concetrate on supporting him emotionally instead of trying to pick me apart.  This is going to become very hard for both of us.

so sorry to hear of the kids  :(  I hate it when kids don't see the need to support.  You will be making decisions for him then, but the main question still stands out. . . where is YOUR support system?

I was very fortunate that I've found out that my kids are great caregivers.  I had a bf for a short while there also, and my kids also did great with that.  

On Mar 09, 2016 4:58 PM JEYEREH wrote:

On Mar 09, 2016 4:14 PM hisprincesstoo wrote:

yes, the waiting is horrible.  When I got to my decision point, then, it seemed like it took forever to get it moving.  before I let them know I was still making my decision, they were moving at record speed!  

I got to the point that I quit looking for information, and just released it.  The overwhelm was getting tooo much to handle.  I concentrated then on tasks, and how I was going to survive.  One of the things I worked on then was a CD of worship music. I picked out relaxing healing songs to listen to so I could keep calm.  Today even I still listen to it.  I also did my living will n stuff including a power of attorney for my son who became my primary caregiver, and involved in all decisions.  Perhaps you can discuss such things so you will be that primary caregiver.  You will also need a support team put together to help you thru as the primary caregiver.

Lord be with you both.

Thank you for answering so quickly.  My husband never has and probably never will discuss the (bad stuff), (death-funeral-burial) things like that.  I'm not sure if that is what you are talking about.  Through the years when I broach the subject he says he doesn't want to discuss it.  I bought our cemetary plots years ago and he knows about that.  I guess some people just don't want to discuss it.  It puts a heavy burden on me for sure.  He has adult children from another marriage who add many, many gray hairs to my hear.  Although we have been married for 15 years I am treated and condemned as the wicked stepmother.  Thankfully, the daughter lives out of state and has her own family.  Young people these days just don't get it.  He has a daughter and a son and they think they know everything, all young people think they know more than the doctors and they question me in every way, they have made themselves comfortable with disrespecting me.  Perhaps things will change I'm not sure.  I will be the primary care giver of my husband and do anything and everything to make sure he is ok.  We are people of faith and I will lean on that every minute of our walk.  God brought us to this and God will walk with us all the way.  My husband looks to me for EVERYTHING, the appointments, the prescriptions, the correspondence, everything.  I'm praying that the Lord keep my mouth shut when it comes to his kids.  Perhaps this will bring everyone together.  I don't work, my husband afforded me the luxury of not having to work, so like just the other day, one family member asked him if I was going to go back to work.  I think they need to concetrate on supporting him emotionally instead of trying to pick me apart.  This is going to become very hard for both of us.

I was in the same confused situation just months ago deciding to have surgery first or chem and rad.  In the end, I opted to do chemo and rad.  Part of my decision was 1. I was going to have to have chemo and rad anyways since I was also stage 4, tonsil, base of tongue, nodes; 2. I am in a smaller town and my ENT admitted he only does this extensive of surgury once a year.  It was going to take me some time to get into a clinic and get someone who was very experienced at this surgery; 3. I wanted to take the chance to avoid surgery all together.  

I now have a surgeon who is ready if my scan does not come back clean.  I finished treatment and am waiting til May to see if it worked.  Not saying this is the right choice for you, but just thought I would share mine.