Nervous About Husbands Starting Radiation

My husband  had a mass on his right tonsil. His

tonsil was removed on 10/05/07, it came back

cancer. Medical term squamous cell carcinoma,

T1.  My husband is in excellent health, has never

smoked or consumed alcohol.  Xrays and PET

scans revealed cancer confined to tonsil area.

Will start radiation within the next week and

concerned how it will affect his health now and

in the future? 

I would appreciate hearing from someone who

has had T1 tonsil cancer who has not smoked

or drank alcohol in the past.

 

On 11/2/2007 anxious spouse wrote:

My husband  had a mass on his right tonsil. His

tonsil was removed on 10/05/07, it came back

cancer. Medical term squamous cell carcinoma,

T1.  My husband is in excellent health, has never

smoked or consumed alcohol.  Xrays and PET

scans revealed cancer confined to tonsil area.

Will start radiation within the next week and

concerned how it will affect his health now and

in the future? 

I would appreciate hearing from someone who

has had T1 tonsil cancer who has not smoked

or drank alcohol in the past.

 

Hi ,

Although
you requested a response from a T1 survivor I wanted to respond. I was
/ am a T3, N1 patient out of treatment now since Feb 22 of this year.
While all patients and treatments offered by physicians are different a
T1 tonsil cancer is the very treatable by anyone's standards today. You
have every reason to be concerned but should be thankful it is only a
T1. The severity of treatments required are much less with a T1 than
even a T2. Also due to the fact your husband is a non smoker and non
drinker ( like myself) it is very likely the cancer is HPV related.
From what my wife and I have researched HPV tonsillar cancers typically
respond well to treatment and are less likely to have a recurrence,
than tobacco / alcohol caused oral cancers. I was very fortunate in
that mine was reduced to 50% initial size in the first week and half of
treatment and was unmeasurable by the fourth week. By all accounts I am
doing very well with very few side effects, almost no salivary loss and
no taste loss and so far, all clear : ) You husbands T1 is not as
severe as a T2 or T3 so he should do alot better than me with any luck
at all and proper decisions on his part. It is important for you and
your husband to act quickly but intelligently by doing research into
the available treatment centers in your area. The physicians
experience  with head and neck cancers particulary, is very
important. This is because they will be the point person handling the
treatment and their recommendations must be carefully weighed against
what is actually necessary. I have the utmost respect for the medical
profession and the efforts most doctors make in the attempt to cure our
illnesses. They call it a medical "practice" for a reason. Due to our
physiological differences, each patient needs to have their treatment
plan tailored to their exact needs. Some doctors are still practicing
on us while doctors have the ability by using the proper treatment and
plan to minimize damage by radiation to unaffected tissue. If your
husband only has one tonsil and no lymph node involved he is a strong
candidate for IGRT - IMRT radiation systems. These are able to target
just the tonsil area with heavy radiation and smaller doses to
surrounding lymph nodes in case any microspic metases had gone there.
This treatment will most probably salvage salivary glands and taste
buds that are destroyed using conventional radiation delvery systems.
Your husband and you should have faith and confidence in that his stage
and type of cancer is considered very treatable with a high likelihood
of real success, not the 25% - 45% typically found on the net from 10
yr old studies. 

We are all pulling for you here,

Matt 

Dear anxious spouse, I can speak from experience thus far that your husband is very lucky to have discovered this so early. The prognosis is should be very good. Here is my story: I am from Long Island NY. Age 53 at diagnosis in March 2007, female non smoker (entire life), non drinker (not since high school) and excellent oral hygiene (gums/teeth cleaned at peridontist every 3 months, sonicare brush at night, floss). One day at the breakfast table, my boyfriend made me laugh and since I have such a big mouth :-) he said "whats that thing in your throat?". I looked in the mirror and there was a growth about the diameter of a quarter sticking out of my right tonsil. No sore throats, no pain at all no swelling of lymphs. Went to my ENT at Sloan Kettering (he has been watching a hurthle cell growth on the right side of my thyroid since 2002) and he did a quick biopsy snip of the growth. He felt it was not cancerous and probably just a papilloma. Pathology report indicated severe dyslplasia and he said the tonsil had to come out , but still felt it was not cancerous. Had right tonsillectomy on 3/21/07 and Dr. still felt confident (told my boyfriend when I was in recovery) that all would be well. The next week at my post op visit, when the Dr. shut the door to his office and I saw the look on his face, I knew it wasnt good. He said I had SCC, stage 2, N0; the biopsy indicated lymphovascular invasion and there was a very small margin on the tonsil, hence, 6 weeks of radiation were indicated. I went to 2 medical oncologists and 3 radiation oncololgists and the conscensus was 3 to 2 in favor of chemo One radiation oncologist felt that the improved prognosis I would get from chemo was not that great to warrant the more severe side effects, especially in light of the fact it was stage 2. I chose this course of action. My last radiation treatment was 6/15 and I started to feel better by the end of JUly. I was able to complete 44 miles of cycling on the hilly roads of Lake Placid NY. The two weeks after radiation were the roughest as I could not sleep at night. Every hour or so, I would wake up with a burning throat and tongue and go into coughing fits which then further aggravated the pain in the throat. I lost about 12 lbs since I had no taste buds and eating tasteless food that hurt my throat made me not want to eat. Scrambled eggs was about the only palatable thing I could tolerate. Chocalate (something I was addicted to) is HORRIBLE! I still mourned the loss of my taste buds as I didnt realize how much I loved eating and how social eating is. I also mourned my saliva glands as the dry mouth is very unpleasnt. None of the things (biotene, salivart , Calphasocol helped the saliva. THe burn on my neck was pretty bad now there is only a little discoloration. My prognosis is good and I will be under a microscope for the next few years (endoscopes, PETS) so I am thankful for that. One thing I have noticed , many of the people are NON smokers and NON drinkers in their 40's/50s. My doctors suspect my cancer is HPV related (the good news is, this has a better prognosis than tonsil cancer related to smoking/drinking). Johns Hopkins has done some interesting studies on this (HPV related tonsil cancer) and published some findings in May of this year that have linked the two. I think we are just seeing the tip of the iceberg with HPV and head and neck cancer. At this point , I still do not have full saliva (eating bagels requires lots of liquids to get them down) and my taste buds are not as strong as the used to be, but I can still enjoy food. Interesting thing, I used to love Nutella, but it does nothing for me anymore. Go figure. I wish you and your husband the best. The journey will get rough at some times, but there is light at the end of the tunnel.