On 5/6/2008
Hope28 wrote:
Hello
My dad is 53 and found out he has MCL 5 days ago. He developed a grape like lump on his tonsils. (we all thought it was a cyst, until he got the results from the biosopy) We are going for the first CT tomorrow. We will be meeting with a doctor in Boston on Friday to discuss treatment options. Does it matter on what stage your at? We are all very terrified. He feels great, and so confused on how and why he has it. It has been a VERY long and emotional weekend. I freaked out when I read the scary stats online. After reading this blog, I feel a little better, but still confused. What is Mantel Cell, and how is it different from regular Lymphomia? Does it attack your organs? Is it throughout your lymphatic system or just in particular lymph nodes? I am so glad they have websites like this you we can network and find great support.
Hi Hope 28
Your dad has tonsil cancer. I believe he’s stage “2”. If the
tonsil spreads cancer to another place, that’s stage 3. Not sure what stage 4
is.A CT scan will see if it has spread.
Last fall I had a swollen lymph node in my neck, an ENT took
it out, thinking it wasn’t a big to-do. It was cancerous and the ENT says that
usually always comes from the tonsil or someplace in the mouth.
In December a surgeon removed my tonsils and did a biopsy on
my tongue, cheek, vocal cords.
Result: My right tonsil was cancerous and had “jumped” to
the lymph node. Both were encapsulated, which means cancer was contained in those
two things they removed.
Your dad having a lump ON HIS tonsil has tonsil cancer.
There is usually called the “primary” (where it starts from) and the CT will
show if cancer jumped someplace else. Mine jumped to the lymph node.
They will take out his tonsil and make sure they do both. My
surgeon wasn’t going to and I insisted.
Let’s assume the cancer is just in the tonsil. Your dad will
start with (more than likely) 7 weekly chemo treatments. Takes about ½ of your
day to receive it.
Most them in addition have 33 radiation treatments. They
radiate from your jawbone area down to where your neck hits your shoulders.
Purpose is to kill any caner cells that could have spread. They could also
concentrate to the tonsil area of the mouth to kill any cells that might have
spread to tissue in the mouth.
Because they radiate your throat, he won’t be able to
swallow and eat within 2-3 weeks. They will suggest and I recommend 200% to get
a feeding tube. He’ll have a small plastic tube in his chest to receive cans of
food. I promise you it’s the best thing and over 85% of people need it. 2 weeks
into radiation I cried in a cafeteria-chewing food in my mouth was like chewing
broken glass. They will want to put in the tube when they take out the tonsil.
Do it.
This is known as the worst cancer treatment of all cancers
because of the mouth. He’ll have ulcers on his tongue and cheek, his neck will
get burned from radiation. But months after treatment is over he’ll start to
recover.
I ended treatment on 2/28 and two weeks later I felt worse
(as they told me I would). Today, May 7th, I’ve just started in the
last 2 weeks to eat small bites of food. Not enough to sustain myself but most
discomfort is gone. Good energy, I can talk fine (couldn’t for a while after
treatment). I expect by end of June
maybe to get the feeding tube out. I have to force myself to finish 1 egg, to finish
a half of a baked potato.
They will insert a “port” in his chest. This is connected to
a vein in his neck so when he gets chemo or has to draw blood, they don’t use
his arms. This is out patient surgery for that. It’s a good thing.
If he has disability insurance, place a claim. I have spoken
to many with this and because of the mouth and neck radiation and the problems
(as I have mentioned) most aren’t able to go to work for a month or two.
For the 1st 3 months it’s the worst. After that
you start to come back. Takes 6-12 months and then it’s a bad memory. Its also
a 90% cure rate with chemo and radiation combined.
If I can help further, please ask. Don’t delay on getting
this looked at, started and get the feeding tube. I knew one fellow who had a
growth on his tongue, went down his throat. They had to do a tracheotomy as he
was unable to breath before they didn’t the surgery in his mouth.
My hospital has a “head and neck cancer” support group,
meets once a month. Call and see if you can go to a meeting immediately in a
hospital in your area. I’m telling you, folks who’ve had it done will tell you
the truth in detail. Doctors don’t tell you everything. If they did, you might
not show up (honestly). I heard more about it, how to deal with it, how long recuperation
took from the support group than I did from doctors.
Stay strong, it’s all curable. Let all of us know if you
have more questions. Post here if you’d like to chat over the phone, happy to
help.
David