Scared!! Diagonosed with throat cancer

On Mar 08, 2016 12:42 PM Dlynn1210 wrote:

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

Sorry Diana, but the cancer is caused by HPV, strain HPV16 to be exact. It's squamous cell carcinoma due to HPV16 virus.  HPV lives in and transmitted throughthe epithelial surface (squamous cell), the strain HPV16 is most commonly found in these cancers.  They are directly related.

"The leading cause of oropharyngeal cancer is from HPV" - See more at: http://www.oralcancerfoundation.org/hpv/#sthash.rvVbzbQ5.dpu

On Mar 08, 2016 5:00 PM Dsunryz wrote:

On Mar 08, 2016 12:42 PM Dlynn1210 wrote:

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

Sorry Diana, but the cancer is caused by HPV, strain HPV16 to be exact. It's squamous cell carcinoma due to HPV16 virus.  HPV lives in and transmitted throughthe epithelial surface (squamous cell), the strain HPV16 is most commonly found in these cancers.  They are directly related.

"The leading cause of oropharyngeal cancer is from HPV" - See more at: http://www.oralcancerfoundation.org/hpv/#sthash.rvVbzbQ5.dpu f"" target="_blank" rel="nofollow">http://www.oralcancerfoundation.org/hpv/#sthash.rvVbzbQ5.dpu target="_blank" rel="nofollow">http://www.oralcancerfoundation.org/hpv/#sthash.rvVbzbQ5.dpu

Let me clarify, not all will be from HPV, some are related to smoking and drinking.  When the doctor tells you that your cancer is from HPV you can safely assume it is related. Having HPV is not a conduit in treating your cancer, what they mean is the HPV RELATED cancer has a very positive response to treatment.  

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

Hi Cheyenne,

“Surely goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the Lord FOREVER.” (emphasis mine).

I know you repeated that many times during those dark days so I thought you might get a smile seeing it in print. It is so nice to see you posting again. As you so aptly said, each case is different and so are our reactions. My brother, diagnosed in 2013, has moved on, however it is always there. Now he self-medicates with Rick Simpson’s oil, which seems to assist him with maintaining his weight. I am not promoting it, however it seems to be working for him. He lives in Oregon so legality issues do not apply.  

Thank you for coming back. It is a blessing when a survivor makes the effort to post since this is definitely a trial by fire. You have been blessed, however you already know that.

I wish you continued health and hopefully you can be a beacon of hope to those you touch. May our Lord Christ Jesus continue to use you for His Glory.

Clint

Clint - As we know, the cannabis oil will not cure cancer which is often promoted on here. It does increase appetite but I found that given a little time, my appetite returned on its own.

It is also illegal in the majority of states and someone who recently came to CC just to sell it told how he indiscreetly packaged it so it was not illegal. It may not get inspected (MAY not) by the postal authorities but it is still illegal to have in your possession in many states - FL where I live for one.

Diana

Is is notfromHPV.  I am a female, never smoked or drank, and I am not HPV positive.  What I have read is that those with HPV do have positive outcomes but then so do the the majority of the rest of us.  My daughter has been HPV positive for 18 years and has never been diagnosed with any type of cancer. 

Diana

Explain then why a female that is not HPV positive, who has never smoked or drank in her life, is diagnosed with tonsil cancer.  It is also more common in males so I beat all the odds. 

I am by far no expert on HPV but I gathered from what others have said on CC and in my research while undergoing treatment that if a cancer patient is HPV positive, the results are more positive.  What I don't understand is why then is there such a high cure rate among all diagnosed with tonsil cancer?  Most likely due to the invent of Cisplatin chemo - at least according to my oncologist.  A reoccurrence has less favorable results.

Diana 

On Mar 08, 2016 5:16 PM Shereeclint wrote:

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

Hi Cheyenne,

“Surely goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the Lord FOREVER.” (emphasis mine).

I know you repeated that many times during those dark days so I thought you might get a smile seeing it in print. It is so nice to see you posting again. As you so aptly said, each case is different and so are our reactions. My brother, diagnosed in 2013, has moved on, however it is always there. Now he self-medicates with Rick Simpson’s oil, which seems to assist him with maintaining his weight. I am not promoting it, however it seems to be working for him. He lives in Oregon so legality issues do not apply.  

Thank you for coming back. It is a blessing when a survivor makes the effort to post since this is definitely a trial by fire. You have been blessed, however you already know that.

I wish you continued health and hopefully you can be a beacon of hope to those you touch. May our Lord Christ Jesus continue to use you for His Glory.

Clint

great to hear you back and that you are doing so well cheyenne.  I also had trouble with the feeding tube and needed it out, but I ended up drinking the formula ( jevity mixed 3: 1 with ensure plus) for the longest time, and am just now being able to eat enough to mostly get off the formula.

What did you end up doing with your mask?  I have mine as a trophy of victory in my living room.  lol  Who would have thought that one?  That one did take me a bit, but I knew to have my son keep it outa my sight til I asked for it.

On Mar 08, 2016 11:10 PM hisprincesstoo wrote:

great to hear you back and that you are doing so well cheyenne.  I also had trouble with the feeding tube and needed it out, but I ended up drinking the formula ( jevity mixed 3: 1 with ensure plus) for the longest time, and am just now being able to eat enough to mostly get off the formula.

What did you end up doing with your mask?  I have mine as a trophy of victory in my living room.  lol  Who would have thought that one?  That one did take me a bit, but I knew to have my son keep it outa my sight til I asked for it.

On Mar 09, 2016 12:53 AM CheyenneMoon wrote:

On Mar 08, 2016 11:10 PM hisprincesstoo wrote:

great to hear you back and that you are doing so well cheyenne.  I also had trouble with the feeding tube and needed it out, but I ended up drinking the formula ( jevity mixed 3: 1 with ensure plus) for the longest time, and am just now being able to eat enough to mostly get off the formula.

What did you end up doing with your mask?  I have mine as a trophy of victory in my living room.  lol  Who would have thought that one?  That one did take me a bit, but I knew to have my son keep it outa my sight til I asked for it.

You have to get over the fear of eating. Quit using the tube because it's easy. If something smells good, take a bite, chew it well and drink water. I was so freaked out about not ever being to eat again I forced myself to start. I choked plenty of times, got scared but kept doing it. I can even eat steak if it is tender or medium rare. I don't eat it often though. You have to conquer the fear in your mind about eating. I still struggle with saliva problems so I drink water all the time. The mask is in the shed. I will probably end up using it for target practice. Much love Cheyenne At the moment I am eating extremely spicy Mexican food.??