Are there any 5 year stage 4 tonsil cancer survivors here?

56 Posts | Page(s): 1 2 3 4 5 6 Next 

Are there any 5 year stage 4 tonsil cancer survivors here?

by mark5004 on Wed Aug 05, 2009 12:00 AM

Quote | Reply

I recently read a recent study of tonsil cancer patients with data from a ten year period on 45 patients with stage 4 diagnoses.  It portrayed a dismal prognosis over the ten year period with a 19 percent survival rate (over ten years).  I found the study on Google, and recall it seemed to have contained recent data, but I lost track of the exact search term that I used to find it.  With provocation from another member of this board I am asking the question,  "Do we even have any five year survivors that can be counted here?" 

It might be interesting to others to indicate what your treatment methodology was rad+ chemo, primary surgery + neck dissection, or without dissection as applicable.

RE: Are there any 5 year stage 4 tonsil cancer survivors here?

by Ripvanwinkle on Fri Aug 07, 2009 12:00 AM

Quote | Reply

Date: August, 2009

You are going to get lots of answers in varying formats. I will try to establish a format that will make correlation easier.

Diagnosis Dec 2006.................Stage IVA T2N2Mo

Location of treatment..........Bradenton FL

Dental issues.........no extractions; have full dentures upper and lower

Treatment..............3 8-hour chemo infusions, 35 radiation sessions--70Rad

End of treatment...........May 2007

Results.........all PET/CT scans negative as of March, 2009

Effects........still using PEG tube, as suffering dysphasia and limited sense of taste (maybe 5%), sense of smell unaffected.

Food.........5-6 cans Isosource 1.5/day for past 2.3 years

Current health...........excellent

 

 

 

RE: Are there any 5 year stage 4 tonsil cancer survivors here?

by BeckyCancerFree on Sat Aug 08, 2009 12:00 AM

Quote | Reply
I have spoken with several people who are farther along than 5 years and are doing very well. I plan to be one of them. I am not a percent, I am a person and I am not willing to consider my odds just in terms of percents, I am just going to go ahead and treasure the gift of my life and do the best I can do to take care of my health. In the end, what else can we do?

RE: Are there any 5 year stage 4 tonsil cancer survivors here?

by 4Times on Fri Aug 14, 2009 12:00 AM

Quote | Reply

I have am over 4 years from finding out I had cancer and hoping to make it past 5.  I have had an original cancer June, 4 years ago, tonsil cancer with a radical neck dissection and reconstruction of my palate leaving me with some speech difficulty.  I had 3 rounds of radiation (2 of IMRT, 1 of even more precise radiation), 2 rounds of chemo (Cisplatin and Erbitux separately).  I had about a total of 6 surgeries associated with the cancer.  It had spread to both sides of my neck, tonsils and into the oropharynx.

I have had some significant loss of taste but can eat OK with some small amount of difficulty.  Some dry mouth but not too bad.   I have a lot of neck stiffness, pain and cramping of the neck muscles but it is functional.

PET scan in May was completely clean.  Hope to keep it back that way.

RE: Are there any 5 year stage 4 tonsil cancer survivors here?

by BeckyCancerFree on Fri Aug 14, 2009 12:00 AM

Quote | Reply
I hope it stays that way too! All the best to you. Question: when you say "rounds of radiation" do you mean several different series of it or several individual treatment days? Several different series would equal many individual treatment days - can you clarify? thanks and take good care, Becky

RE: Are there any 5 year stage 4 tonsil cancer survivors here?

by brianocf on Sun Aug 16, 2009 12:00 AM

Quote | Reply
I am a ten+ year survivor. Stage four with bilateral cervical mets at the time of discovery. Radiation and surgery at MDACC. Still have issues from treatments, but glad to be on this side of the grass- after all to have some of the QOL issues I do, you actually have to be alive.... Brian

RE: Are there any 5 year stage 4 tonsil cancer survivors here?

by BeckyCancerFree on Fri Aug 21, 2009 12:00 AM

Quote | Reply
Brian, thanks for your positive message and encouragement. We need as much of that as we can get!

RE: Are there any 5 year stage 4 tonsil cancer survivors here?

by 4Times on Sun Oct 04, 2009 12:00 AM

Quote | Reply

 

On 8/14/2009 BeckyCancerFree wrote:

I hope it stays that way too! All the best to you. Question: when you say "rounds of radiation" do you mean several different series of it or several individual treatment days? Several different series would equal many individual treatment days - can you clarify? thanks and take good care, Becky

 

I had radiation 3 different times or series over 4 years.  Each series was 5 days a way for 6 or 7 weeks.

RE: Are there any 5 year stage 4 tonsil cancer survivors here?

by 4Times on Thu Oct 15, 2009 12:00 AM

Quote | Reply

 

On 8/5/2009 mark5004 wrote:

I recently read a recent study of tonsil cancer patients with data from a ten year period on 45 patients with stage 4 diagnoses.  It portrayed a dismal prognosis over the ten year period with a 19 percent survival rate (over ten years).  I found the study on Google, and recall it seemed to have contained recent data, but I lost track of the exact search term that I used to find it.  With provocation from another member of this board I am asking the question,  "Do we even have any five year survivors that can be counted here?" 

It might be interesting to others to indicate what your treatment methodology was rad+ chemo, primary surgery + neck dissection, or without dissection as applicable.

I have had 4 occurances, as of Tuesday now 5 below is the history.  I am 8 months away from 5 years. 

I hope this isn't too long.

 

June/July 2005

 

Soft palate and tonsil cancer with lymph node involvement in the neck, stage IV-A T2N2B. I was sent for a subsequent PET scan.  Radical neck dissection surgery on the right side of my neck to remove most of the right side of the soft palate, right tonsil and 37 lymph nodes from the neck, 3 were cancerous with no ECS, largest lymph node being 3 cm with a 3 cm tumor removed from soft palate.  I also had a flap made from the muscle in my neck to replace the soft palate.  The margins from the tumor were negative but thin, 0.4 mm.  I had 6.5 weeks of IMRT radiation to the right neck, soft palate area.   Needed physical therapy to regain arm/shoulder functions.

 

August 2006

 

I had a recurrence in August 2006 with surgery to remove a small tumor in the left tonsil & left soft palate region with a second reconstructive surgery.  PET scan was performed prior to surgery and neither the tumor nor any cancerous lymph nodes showed up on the scan.

 

September 2006


The August 2006 reconstruction did not hold, so an oropharyngeal flap was constructed from the back of the throat to connect to the remaining soft palate.  This worked and after some recovery I am able to eat, drink and speak somewhat normally.

 

January 2007

 

In January 2007 I had a follow up PET scan which showed one lymph node cancerous.  I had radical neck dissection on the left side where 25 lymph nodes removed 3 were cancerous with largest being 8 mm.  Extracapular extension was found.  Staged as N2B.  Needed physical therapy to regain arm/shoulder functions.  Recovery was relatively quick and I am somewhat back to normal. 

 

March 2007

 

After a second opinions I decided to go through with a course of Cisplatin Chemotherapy and more IMRT radiation.  Made it through it with some side effects loss of weight, taste, thinning of hair, constipation and other effects. 

 

November 2008

 

Found another cancerous tumor which initially appeared small and then was larger like the first one.  This one in my Nasopharynx and went all the way to the base of my skull.  When it was removed it left a fairly large hole in the palate area of my mouth which made my speech hyper-nasal and difficult to understand in loud places.  It was recommended by the Radiation Oncologist to do another round of very precise radiation on the tumor area with 12 different beams converging on one spot.  Since I was doing radiation, the Chemotherapy Oncologist recommended I go through a course of Erbitux/Cetuximab to improve the effectiveness of the radiation which was a new EGFR type chemotherapy.  I had side effects of loss of hair in areas of my head, loss of taste, tightening of the neck with occasional cramping type spasms, possibly some cognitive issues but not real sure about that.  Followed up with Physical Therapy which helped greatly with the spasms, muscle strength and range of motion.  Massage has also helped greatly with the cramping and spasms  Have recovered from most everything except the muscle spasms and taste.  My hair has grown back although a different color and not quite as thick on the back left side of my head behind my ear.  Also, my speech is still a problem and I am hoping for another reconstructive surgery or the ability to install an palatal obturator into my palate to fill the hole left by the surgery and return my speech to normal.  The radiation oncologist said he now has radiated everything and everywhere he radiated the cancer has not returned.

 

October 2009

 

Was fitted for an obturator to be installed which will be delayed because I have been diagnosed again with a sizeable cancer tumor in my tear duct area, and a spots on either side my neck just below my jaw.  Surgery planned for Monday to remove these tumors. Also, there is a small inoperable tumor in the oropharynx next to my carotid artery which they hope to treat with Cyberknife and/or treat with Taxotere or some other Chemotherapy. 

 

RE: Are there any 5 year stage 4 tonsil cancer survivors here?

by dec49 on Wed Aug 18, 2010 12:09 AM

Quote | Reply

I know the last entry here was almost a year ago, but maybe someone interested is still out there.

I am 61 years old and a Vietnam vet.  In April 2004 I was diagnosed with stage 4 tonsil cancer.  As an aside while I am thinking about it, it should be spotted much earlier if you have regular doctor's visits.

Stage 4 means it had already begun to spread.  Mine had spread to the lymph nodes on the left side of my neck.  Between New Years day and April I went from 1 small swelling to 3 large ones.  During the biopsy the doctor removed 1 and it exploded on him.  He left 2 of them alone so we could measure the effectiveness and progress of treatment.  My treatment consisted radiation therapy for 6 weeks.  During that time I had three chemo treatments  1 on the first day of radiation therapy, one halfway through and one the last day of radiation.  The chemo made me extremely sick.  I was in hospice twice during this time.  I think it hospice instead of a regular hospital room for the reason that hospice was a quiet area and nurses and others were not running through all the time.

I had a radical neck dissection about 30 after the end of chemo.  This gave my neck skin time to heal from the radiation burns and the scarring of my neck tissue had not yet started.

I went back to work 27 days after my surgery.  This is a pretty long reply.  If anybody has specific questions about post treatment life, etc. I'll be happy to answer individually 

 

 

 

56 Posts | Page(s): 1 2 3 4 5 6 Next 
Subscribe to this message board discussion

Latest Messages

View More

CancerCompass Survey

If you were considering traveling for cancer treatment, which headline would you find more interesting?

Get $75 for taking a research survey

We care about your feedback. Let us know how we can improve your CancerCompass experience.