Mother newly Diag. SCC - Base of Tongue, Input please!!

BrynnK

Hello!

My perfect mother was diagnosed with Squamous Cell Carc last week after complaints of throat pain for 2 months and a subsequent CT scan and Biopsy. "They" say it's very early and we are awaiting the PET scan. Everyone seems to be SUPER cheery about her prognosis and as if it is no big deal - which is GREAT. Given my family members have a penchant for incuring rare/not so rare life-threatening illnesses I am weary of the "everything is going to be fine" approach. I'm anecdotally medical, and have more details about her case specifics - seems the lesion/tmr is 3 cm base of tongue and crosses the middle of the tongue (making surgery as a first option N/A) - it may be close to voice box too. 

I am really wondering at this point, as we await the more conclusive tests, is it right to be making patients feel like everything is going to be alright - literally, walk in the park conversations were happening. And we saw docs at John's Hopkins, GTown Hosp... please please please any input would be HUGELY appreciated. I know rad/chem is gonna suck big time, the side effects will be terrible for Mom - but even knowing that - from other things I've read SCC in this area is apparently very dangerous as far as met and recurrence. HELP!

Noellesmom

I see

16 reads and no comments to your post.

I think this is in part to the early hour of your post, Brynn, and in part because saying the right thing is difficult at this point.

I am a caregiver, as you will be, not a survivor. The group of people on this very active board are smart and strong and will provide good first-hand information as your mother's treatment progresses.

Everyone's journey has similarities to everyone else's but differences, too. Remember that as a caregiver.

Right now you are in the hurry up and wait part of the trip. Seems like you spend hours in waiting rooms to get five minutes with the doctor or nurse.

Get a notebook or journal and write everything down. If you don't take your mom to an appt, have whomever does take good notes. She should not go alone: her mind may be too busy for details.

You should visit the caregiver site: it us also very active, especially for head and neck.

 

SuzJ

Staying positive

is the #1 thing. 3 cm isn't in the grand scheme of things, that big,

I'm sorry, just woke up, bit groggy, will attempt more sense when I'm awake.

CivilMatt

welcome

BrynnK,

Welcome to the H&N forum, where cheery is way ahead of leery most of the time.  Matter-of-fact I would probably limit my exposure to “downer” people.  This is hard enough without someone calling a play by play.  Many of us have bad times where we feel like we are going to go, but the will to make it and the good fortune of a body responding positively to treatments saves the day.

Normally, your body gets beat up, but inside the cancer is being reduced and you actually are getting better.  It truly appears medieval but hopefully the outcome will be many more years of being with your Mom.

Some of the side effects may make you think twice, but a few for me were like a walk in the park, at night, with it raining and no shoes (not good, but not terrible).

Be yourself, love your Mom, be sincere about helping and be happy when things don’t go sideways.

Matt

BrynnK

Thank you!

Thanks for your kind words everyone. I think I scared myself into sleeplessness reading about SCC online and doing more research. Great to hear - even if it's just an opinion - that 3 cm isn't that big. I really appreciate your comments, and will absolutely check out the caregiver site!

MMDowns

 I too, am a caregiver.  My

 I too, am a caregiver.  My husband is starting his 5th week of treatment tomorrow.  Matt's funny analogy about a walk in the park while it's raining, no shoes, etc... is pretty accurate. For the patient and the caregiver.  It's a hurry up and wait game and the phrase " every patient is different" is true. Annoying but true. What both oncology and radiation dr.s  told us was that this cancer has a very good outcome. The treatment is wicked tough but they wouldn't put someone through it if the outcome wasn't worth it. That really helped both of us. My husband is doing well.  The chemo was not fun. It really knocked us for a loop. However, there are people that have had the same chemo with little to no side effects.  The radiation slowly accumulates the side effects.  His first 3 weeks with radiation was just fine.  So it is true. Every person is different. 

 

    This forum is wonderful. I really believe it's helped us get through the 4 weeks. People on here are so kind and they know exactly how my husband feels and can offer advice. It's been a life saver.  The best advice I have been given was to take it day to day and to expect the unexpected.  It will be Ok. 

AnotherSurvivor

Throat cancer treatment has

Throat cancer treatment has evolved a lot in the last 20 years.  The previous generation included a lot of military vets, and the cancer was correlated with alcohol and tobacco use.  Treatment tended to come from VA hospitals and was medieval.

Most H&N cancers now are not life ending, and treatment is highly evolved - enough so that it actually retards research on better methods (when your odds are 95% on a well known process, why roll the dice).   A Stage II - III cancer like you describe probably has a successful treatment rate in the +90% range.   None-the-less, it won't be fun or easy.    When things get started, probably for the first week or two, she may not notice much change.  Things highly probably will not stay that way.  Anticipate she will need a close to full time caregiver for at least a few weeks.  Nutrition and hydration will be tough to maintain, lectures on the need will not improve her disposition nor change her condition.  It will be a very traumatic seven weeks.

susanpark

My husband was diagnosed in

My husband was diagnosed in June 2016 with SCC base of the tongue (HPV+).  He is neither a smoker or a drinker.  He had almost no symtons to the day he was diagnosed. He was stage 3 with one lymph node (they did not test the lymph node/it was just a little enlarged on the CT/PET. so they treated as though it had cancer).  He had 33 rounds of radiation and 5 rounds of chemo (cisplatin). His last bit of treatment was 8/18/16.  He had first PET in Dec of 2016.  There was still some uptake but they felt it was still a result of inflamation from the radiation as well as the ENT scopes him every 4 weeks and can see the swelling.  Probably the smartest thing he did was to have a PEG tube put in week one of treatment while he still felt good.  He still lost 35 lbs when all was said and done. He made sure that he continued to take in liquids orally everyday so as to keep his swallowing working as best as it could. He never had bad throat pain, but he has mucositis that was insane.  He is feeling great (aside from hernia surgery he just had last week). Again, he is scoped every 4-6 weeks since treatment ended by the ENT.  He is due to have another PET next month but has opted for a CT instead to try and lessen the amount of radiation that he keeps getting.  We are told that since his was HPV + his prognosis is very good. His taste came back almost 90%, cant say the same about his saliva. Dry mouth is an ongoing issue but dealing with it. He keeps a bottle of water with him at all times. He is able to eat just about anything with the exception of just a few items.  The treatment is really rough but doable.  A positive attitude is one of the most important things when going through this.  My personal opinion is that attitude can be as important as the treatment itself.

CivilMatt

susanpark said:

My husband was diagnosed in

My husband was diagnosed in June 2016 with SCC base of the tongue (HPV+).  He is neither a smoker or a drinker.  He had almost no symtons to the day he was diagnosed. He was stage 3 with one lymph node (they did not test the lymph node/it was just a little enlarged on the CT/PET. so they treated as though it had cancer).  He had 33 rounds of radiation and 5 rounds of chemo (cisplatin). His last bit of treatment was 8/18/16.  He had first PET in Dec of 2016.  There was still some uptake but they felt it was still a result of inflamation from the radiation as well as the ENT scopes him every 4 weeks and can see the swelling.  Probably the smartest thing he did was to have a PEG tube put in week one of treatment while he still felt good.  He still lost 35 lbs when all was said and done. He made sure that he continued to take in liquids orally everyday so as to keep his swallowing working as best as it could. He never had bad throat pain, but he has mucositis that was insane.  He is feeling great (aside from hernia surgery he just had last week). Again, he is scoped every 4-6 weeks since treatment ended by the ENT.  He is due to have another PET next month but has opted for a CT instead to try and lessen the amount of radiation that he keeps getting.  We are told that since his was HPV + his prognosis is very good. His taste came back almost 90%, cant say the same about his saliva. Dry mouth is an ongoing issue but dealing with it. He keeps a bottle of water with him at all times. He is able to eat just about anything with the exception of just a few items.  The treatment is really rough but doable.  A positive attitude is one of the most important things when going through this.  My personal opinion is that attitude can be as important as the treatment itself.

welcome

susanpark,

Welcome to the H&N forum, it sounds like your husband is doing well.

Mine was similar, stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).  It took me a while to get back on the food train, but here I am enjoying the dining car.

Good luck with all future scan and keep up the positive attitude.

Matt

SuzJ

AnotherSurvivor said:

Throat cancer treatment has

Throat cancer treatment has evolved a lot in the last 20 years.  The previous generation included a lot of military vets, and the cancer was correlated with alcohol and tobacco use.  Treatment tended to come from VA hospitals and was medieval.

Most H&N cancers now are not life ending, and treatment is highly evolved - enough so that it actually retards research on better methods (when your odds are 95% on a well known process, why roll the dice).   A Stage II - III cancer like you describe probably has a successful treatment rate in the +90% range.   None-the-less, it won't be fun or easy.    When things get started, probably for the first week or two, she may not notice much change.  Things highly probably will not stay that way.  Anticipate she will need a close to full time caregiver for at least a few weeks.  Nutrition and hydration will be tough to maintain, lectures on the need will not improve her disposition nor change her condition.  It will be a very traumatic seven weeks.

Holy..

You just described me at the end there...

 

 

Noellesmom

Throat cancer is too generic a term

Survival rates vary greatly by site of tumor.