My mother has throat cancer.

Tonsil Dad

Pumakitty said:

Hi
I can understand about how you feel about your mom. I am the same about my mom. My dad was told he had tongue cancer stage 4 almost three years ago. The doctor told us it did not look good. Then he went to the oncologist that is wonderful and started treatment. He had radiation and chemo. It was hard and he did not have alot of the side effects many people have we were lucky. He has had one reoccurance and that was treated with chemo and he is still doing good. My dad is 73 years old.

My best advice is stay on this board, they have been here for me and my family for three years. They can give you the best advice and settle your fears and best of all we just listen.

Make sure you like and trust your doctor and can talk to them.

Also, know that your mom will know how much you love her and you will be able to take care of her and stop reading all the statics. It sounds like your mom is a strong person and will fight this. Please believe in her and stop being angry at yourself. I have been there and it did not help.

Please email me kposton@odu.edu if you every want to talk. When I read what you wrote it sounded such much like what I would say about my mom.


Kathy

Welcome.
Welcome to our piece of the internet Ashley ( same name as my daughter )
sorry about your mother having " C " but you will be so glad you found this
place. It is filled with knowledgable, caring, supportive and generally darn
good people. Don't let doctors plant seeds in your heads about how long
or with statistics on how long your mother has got left they have no right,
only GOD can determin that. HAVE FAITH AND STAY POSITIVE. Im also in
Florida and as Skiffin said there are a lot of great facilities here. I was treated
at the University of Miami H&N Cancer Center in south Florida and as far
I know they did a pretty good job.
So once again Ashley welcome and keep us all updated and ASK questions.
Your Mother is lucky to have you by her.

God bless
Tonsil dd,

Dan.

phrannie51

Ashley....
my mom also was diagnosed with voice box cancer...this was back in 1999...she had gone for months with the raspy voice until we forced her into the Dr. They did take out her voice box, so she had to learn to talk with an implant (TEP)...but she learned and lived on for many more years.

Everybody who is talking to you, now...either has had cancer or is a caregiver to a loved one...you couldn't be in a better place.

I can only reinterate that food and water are super important...and quitting smoking, of course (hell of a time to have to do it, but it also is a time of great motivation)...getting some weight on at this time is important, as treatment makes it hard to eat. Nice to have some extra pounds.

You stay close to this board...we'll tuck you under our wings and walk you thru this experience. If your mom has questions...ask those, too. There isn't anything that hasn't been touched on here...

p

Ashleylouu

Noellesmom said:

rambling
is sometimes what this place is for.

I can understand all your feelings - fear, terror, anger - we've all been through those to one degree or another so we can empathize. The question "why her?" - many cancer patients end up looking around and saying "why NOT me?" Cancer doesn't pick you no matter how personal it gets, Ashley, no matter how much it feels that way so try to let go of that feeling. Getting it doesn't necessarily mean you did anything that led to it although the individual cancer patient may be able to point to things in their life that contributed. Maybe not. Maybe just genetics.

Just as others on this post have said, you don't have enough information yet, I'm a little confused and concerned this doctor would give a prognosis at this point - although you did say the doctor said "could" have only 6 months - shoot, I could have only 6 minutes and I don't even have cancer! My husband was diagnosed with early Stage IV hypopharyngeal cancer 2.5 years ago and likely had less than 3 months to live before they started treatment. Although we constantly watch for recurrence, today he and I will take our grandson to see "A Christmas Carol" and he will come home afterward to continue work in his woodshop on several more Christmas presents. Other than residual pain issues and the need for ongoing pain management from nerve damage, he is doing well. He is enjoying his life.

Let us know what you find out but try to remember that we all learn to make the most of each day and each minute - there are good ones and there are bad ones - when a loved one has a cancer diagnosis. I'm sorry you are where you are in dealing with cancer but I assure you there are some great people on this site who are here to help you.

Come back and let us hear from you, Ashley.

What you're saying, about
What you're saying, about 'why not me?' is what my mom tried explaining to me, I guess that's just had for me to understand.

I'm actually happy to hear that you, along with others, are confused about the doctor giving any kind of information this early... I'm glad I'm not the only one so confused as to why he's saying these things, it just seems TOO early to me. That and he's an ENT doctor. That is true, about the possiblity of only having even a couple minutes to live, cancer or not. That's my current goal, to see it that way. I'm now learning that anyone can die at anytime whether they are sick or not, and that every moment is important and shouldn't be spent on 'what ifs.' It's just taking me a little time to fully get there.

I'm so happy for you and your husband to hear that he is enjoying his life! I feel a million times better hearing what you had to say, and I know it helps my mom, too. Thank you so much for taking the time to reply to me.

Ashleylouu

Skiffin16 said:

Welcome Ashley....
First and foremost....

Take the statistics, percentages and comments concerning STGIV an only six months to live and through them out the window.

To say that she "could" only have six months to live..... Realisticially, nobody knows how long they have to live...

As for H&N cancer in general, survival rates are very good these days. There are many here that were Dx as STGIV, I myself was STGIII Tonsils. I went through treatment (here in Florida also), and have been clean and clear since...that's going on four years ago now.

Is your MD actually well verse and experienced with treating H&N cancer? Second opinions and facilities are always options....and in some cases not a bad idea.

Not sure where you are in Florida, but there are some very good facilities here... Moffit in Tampa, MD Anderson in Orlando. I myslef live in Lakeland and went to the Watson Center for Cancer Care and Research..., it too is affilliated with Moffit of Tampa.

Anyways...best advise short term, use the internet for research and support, but stay off of the statistics, survival rates and such... Most are old, and bottom line, we are all different and we all bring something to the table.

Most statistics are motivated by some underlying factor, and at best, very general in the sample.

There are tons of awesome people here to answer questions and give you their thoughts, opinions, and experiences...

Best,
John

Today after reading
Today after reading everything on here, I'm definitely able to at least forget about those statistics and such, and comments on only having 6 months to live. I see now how that those don't seem to matter very much, and now I'm just wishing I never let them get to me to begin with!

The doctor she is seeing is an ENT and he somewhat seems to know what he's doing, and he's kind, but all these things he is saying seems too early to be said. We definitely plan on going for a second opinion, so thank you for a few facilities here in FL. I wasn't sure how to even begin with that. I'm located just outside of Gainesville, Tampa and Orlando are only about 2 hours away, so they are pretty close. I'm not too sure where Lakeland is, though.

I definitely won't be using the internet for anything other than support, no more statistics or anything like that. Thank you, John, for your kind and very informative reply!

Ashleylouu

Pumakitty said:

Hi
I can understand about how you feel about your mom. I am the same about my mom. My dad was told he had tongue cancer stage 4 almost three years ago. The doctor told us it did not look good. Then he went to the oncologist that is wonderful and started treatment. He had radiation and chemo. It was hard and he did not have alot of the side effects many people have we were lucky. He has had one reoccurance and that was treated with chemo and he is still doing good. My dad is 73 years old.

My best advice is stay on this board, they have been here for me and my family for three years. They can give you the best advice and settle your fears and best of all we just listen.

Make sure you like and trust your doctor and can talk to them.

Also, know that your mom will know how much you love her and you will be able to take care of her and stop reading all the statics. It sounds like your mom is a strong person and will fight this. Please believe in her and stop being angry at yourself. I have been there and it did not help.

Please email me kposton@odu.edu if you every want to talk. When I read what you wrote it sounded such much like what I would say about my mom.


Kathy

I'm happy to hear that you
I'm happy to hear that you understand my relationship with my mom. I feel so lucky to share something like that with her, and I'm happy to hear you have something just like it! I'm also happy to hear that your father is doing well!

Thank you for your kind words about my mother, she is a fighter! She's been through so much in life, the both of us have, and together we have ALWAYS come out on top! I'm slowly trying to work through the anger I feel, but that seems to be the hardest to get over.

I will most definitely be sending you an email, Kathy, thank you SO much for your reply, I appreciate it so much.

Skiffin16

Ashleylouu said:

Today after reading
Today after reading everything on here, I'm definitely able to at least forget about those statistics and such, and comments on only having 6 months to live. I see now how that those don't seem to matter very much, and now I'm just wishing I never let them get to me to begin with!

The doctor she is seeing is an ENT and he somewhat seems to know what he's doing, and he's kind, but all these things he is saying seems too early to be said. We definitely plan on going for a second opinion, so thank you for a few facilities here in FL. I wasn't sure how to even begin with that. I'm located just outside of Gainesville, Tampa and Orlando are only about 2 hours away, so they are pretty close. I'm not too sure where Lakeland is, though.

I definitely won't be using the internet for anything other than support, no more statistics or anything like that. Thank you, John, for your kind and very informative reply!

Lakeland..
Lakeland is actually on I4 between Tampa and Orlando, a little close to Tampa, but nearly half way between.

Mofitt is probably more well known in the area, but MD Anderson, is MD Anderson...

I would think that Shands or some other facility in Gainesville would have some great history also.

I use to live in that area actually...

Lived and worked (and also college) in both Ocala and Gainesville... Actually my mother is living in Ocala.

I love the Gainesville area, a little cooler and some hills...

Best,
John

ToBeGolden

Ashleylouu said:

Checking out that thread is
Checking out that thread is my very next step! Thank you for suggesting it! I think I need to remind myself of what you said, about keeping myself healthy as well. It seems almost too easy to forget that I need to do that, and I can't help but feel a sense of guilt when I think of myself. But I need to remember she doesn't want me to forget myself or get sick. Thank you for your reply, Mike! It's good to know there are people that are willing to give advice and support!

Children's Meds??
Some Background: My vocal cords have been surgically removed. I have an intermediate ability to talk using esophageal speech (swallowing air and burping to speak). There are also the electro-larynx and the voice prosthesis (TEP) as ways to get speech again.

I also have a very restricted esophagus (food tube) due to the surgery. Because of this, I often use children's (liquid) medicines: benedryl and tylenol. The children's dose of benedryl is sufficient for me, and it helps fight congestion/mucous. When I can't take Alleve, I take children's tylenol. You have to calculate the dose appropriate for an adult (or ask a pharmacist).

Next time in a drug store (or drug section) take a good look at the children's (liquid) over the counter meds. Some of them may be easier for your mother to take. Rick.

Billie67

Ashleylouu said:

Once I moved here and I
Once I moved here and I found her a new doctor, he did lung x-rays (which only found she had chronic bronchitis and emphysema), he also did blood work and then sent her to an ENT doctor. That's who she's currently working with. He did a scope thing and took pictures of her throat and found the tumor which is located on her voice box, and there was a spot off to the side of it. He said that it was making it hard for her to breathe, and she could potentionally suffocate if it closes. That is when he also said 'cancer.' He also found polyps around the area she breathes and on her vocal chords, but I'm a little confused as to what they are... are they related to cancer? I know very little about them, though my brother had them on his lungs and they were easily removed. After that, we went back and he checked her vocal chords with some kind of light and mirror and said they were not moving/not moving properly. (That is something that is scaring me, because he said that is 'really bad'.) She then had a CT scan, but they haven't said much about that, though he felt around on her throat on the outside and said he couldn't feel anything, but the CT scan will tell us if it's in her lypmh nodes (he then again said how 'terrible' that would be, scary again). This Tuesday she is going to have the hole opened more so she can breathe better, and a biopsy.

It sounds like you had a very similar process that my mom did, with what your original doctor did and what happened after. Would you mind telling me how long you were having issues before you were diagnosed? The ENT doctor told us 'we caught it late' and 'had it been caught 8-9 months ago things would be different.' And I get that yes, obviously the earlier the better but the WAY he said it made it sound like 'Oh well, that's that. Caught too late.' Ifeel that he's a good doctor, but I feel like maybe a different one would be better...

I'm so happy for you that your treatment went well! And I very much appreciate you sharing your story with me, it was a source of comfort for my mom and I both. Thank you so much, Billie! And thank you, but I'm definitely the lucky one to have a mom like her!

Ashley
I'm happy to hear back from you. Yes your mom sounds a lot like me as far as symptoms and area of cancer goes. I was raspy for about 6-8 months before I went to the dr. Then once I went to him and the ENT it was another year or so before they sent me to USC. I did not have polyps but many people do and I honestly don't think those are causing your mom problems right now. They are most likely there from her straining and misusing her voice to compensate for the raspy voice. My dr says in most cases that is what they are caused from and they are almost like a callous if you will. The vocal cords open and close when we talk. When one of them is damaged or paralyzed or swollen our voice is affected and it's a defense mechanism to strain to get our voice out. When we do that our cords slam together instead of opening and closing softly like normal and that causes the callouses or polyps.
The scope the ENT used is good but your mom really should have a videostroboscopy (video strobe for short) it is a much more powerful camera and it magnifies your cords large so things can be seen easier. Not all ENT offices have this machine but most teaching hospitals and major hospital specialty centers have them. You should request a doctor who has one. This test is done by going thru your mouth not your nose.
As far as one cord not moving, mine was partially paralyzed too but my ENT said that in itself is not dangerous. I honestly don't think you should give that part too much thought.
Now on to the lymph nodes....I also had some lymph node involvement. I may be wrong on this part but I don't think that showed up on CT. I believe it only showed up on the PET scan, your mom will need that too. It is standard procedure for staging the cancer. It's when it goes into the lymph nodes that it moves from stageIII to stageIV. Mine was stage IV and again, treatment was very successful for me. There are so many more successes now in H&N cancer now than ever.
I honestly think it would be wise to get another opinion. You should try and find an ENT who deals with many cancer cases. Many ENT's don't see a lot of these complex cases. Many of them see earaches, sore throats and nosebleeds on a regular basis. Not saying those are not good doctors, not at all. I'm just saying that some just handle more basic cases. Even my first ENT said I was way out of his league when he sent me to USC. He did my sons tonsillectomy and was fabulous but I needed bigger guns for my situation.
So on Tuesday when she has her biopsy and dilation who will be doing it? The biopsy by the way will only tell them what kind of cancer it is, not what stage it is. Most of us had squamous cell carcinoma (SCC) but there are different types too. You should request that the biopsy be tested for HPV and P16 too. As I mentioned before, so many of H&N cancers are caused by HPV.
Gosh I wish I could be there to answer any questions you may have. Please feel free to send me a private message or you can look me up on FB if that is easier to send private messages back and forth. My name is Billie Miller Aldrich
Ok I think I touched on all of your questions, at least I hope I did.

I hope you and your mom can relax a little and find peace in the fact that so many, most of us have responded well to treatment.
Take care,
Billie

Ashleylouu

Billie67 said:

Ashley
I'm happy to hear back from you. Yes your mom sounds a lot like me as far as symptoms and area of cancer goes. I was raspy for about 6-8 months before I went to the dr. Then once I went to him and the ENT it was another year or so before they sent me to USC. I did not have polyps but many people do and I honestly don't think those are causing your mom problems right now. They are most likely there from her straining and misusing her voice to compensate for the raspy voice. My dr says in most cases that is what they are caused from and they are almost like a callous if you will. The vocal cords open and close when we talk. When one of them is damaged or paralyzed or swollen our voice is affected and it's a defense mechanism to strain to get our voice out. When we do that our cords slam together instead of opening and closing softly like normal and that causes the callouses or polyps.
The scope the ENT used is good but your mom really should have a videostroboscopy (video strobe for short) it is a much more powerful camera and it magnifies your cords large so things can be seen easier. Not all ENT offices have this machine but most teaching hospitals and major hospital specialty centers have them. You should request a doctor who has one. This test is done by going thru your mouth not your nose.
As far as one cord not moving, mine was partially paralyzed too but my ENT said that in itself is not dangerous. I honestly don't think you should give that part too much thought.
Now on to the lymph nodes....I also had some lymph node involvement. I may be wrong on this part but I don't think that showed up on CT. I believe it only showed up on the PET scan, your mom will need that too. It is standard procedure for staging the cancer. It's when it goes into the lymph nodes that it moves from stageIII to stageIV. Mine was stage IV and again, treatment was very successful for me. There are so many more successes now in H&N cancer now than ever.
I honestly think it would be wise to get another opinion. You should try and find an ENT who deals with many cancer cases. Many ENT's don't see a lot of these complex cases. Many of them see earaches, sore throats and nosebleeds on a regular basis. Not saying those are not good doctors, not at all. I'm just saying that some just handle more basic cases. Even my first ENT said I was way out of his league when he sent me to USC. He did my sons tonsillectomy and was fabulous but I needed bigger guns for my situation.
So on Tuesday when she has her biopsy and dilation who will be doing it? The biopsy by the way will only tell them what kind of cancer it is, not what stage it is. Most of us had squamous cell carcinoma (SCC) but there are different types too. You should request that the biopsy be tested for HPV and P16 too. As I mentioned before, so many of H&N cancers are caused by HPV.
Gosh I wish I could be there to answer any questions you may have. Please feel free to send me a private message or you can look me up on FB if that is easier to send private messages back and forth. My name is Billie Miller Aldrich
Ok I think I touched on all of your questions, at least I hope I did.

I hope you and your mom can relax a little and find peace in the fact that so many, most of us have responded well to treatment.
Take care,
Billie

Billie, thank you yet again
Billie, thank you yet again for your reply. I appreciate you taking the time to answer my questions. I will be contacting you via Facebook shortly in reply to your post because that would be much easier for me. My mother has asked me to tell you that she thanks you very much, and you've helped to give her more hope.

hwt

phrannie51 said:

Ashley....
my mom also was diagnosed with voice box cancer...this was back in 1999...she had gone for months with the raspy voice until we forced her into the Dr. They did take out her voice box, so she had to learn to talk with an implant (TEP)...but she learned and lived on for many more years.

Everybody who is talking to you, now...either has had cancer or is a caregiver to a loved one...you couldn't be in a better place.

I can only reinterate that food and water are super important...and quitting smoking, of course (hell of a time to have to do it, but it also is a time of great motivation)...getting some weight on at this time is important, as treatment makes it hard to eat. Nice to have some extra pounds.

You stay close to this board...we'll tuck you under our wings and walk you thru this experience. If your mom has questions...ask those, too. There isn't anything that hasn't been touched on here...

p

Ashley
It's always good to have a second set of ears at the doctor appts. When you gave a timeline from the 1st doctor I couldn't help but wonder if that was his answer if there was no treatment. My surgeon told me my cancer (mandible) was treatable and curable but if I chose no tx I could wait and go to hospice. I had surgery, rads and chemo and have since had a CAT scan w/contrast and then a PET scan with no evidence of disease. I'm glad your Mother is going to have you by her side to make this journey.