I just found out I have cancer

mwellsg

rozaroo said:

hello Mw
I was diagnosed with stage 4b cancer of the toncil Dec 15 2009. Had 35 radiation treatment's
& 3 cisplatin chemo. Had peg tube put in asap & did not use it till end of radtation. Never
lost any weigh & once I found out I started eating for dear life. I actually gained 30 lbs.
Had a hard time keeping feeding's down at first, but hubby kept pushing the food down my tube. My cancer centre gave me a huge helpfull binder which I added more paper too. I kept a daily journal of when I took my med's feeding's & appointment's. Believe me it so helps to
be organized during treatment. Make sure to drink water etc even small sip's. You must do that to keep your swallow & so you do not dehydrate which I did once. I have had scopes done
every two month's & one cat scan which turned out great. Next week is my first pet/cat scan
so we will see how it go's from there. I wish you great success through your treatment & recovery. Remember we are all here to offer support through goodtimes & bad.
God Bless
Roz

Rozaroo
Sounds like you are exactly one year ahead of me. Beat it and I'll follow you over the goal line. I had so hoped to see the doc today and get started but we have an ice storm in Atlanta so here I sit waiting. I started reading Anti-cancer. Great book. It's better when you kind of understand how this beast works. Ready to go and kind of stuck, but like one of the other guys said, maybe it's better to slow it down a bit. I know I feel better mentally. Accepting it, getting ready for the journey. All you guys are great and I am so happy I found this group. I'm sure I have only started to lean on you guys.

BrianKrashpad

mwellsg said:

Rozaroo
Sounds like you are exactly one year ahead of me. Beat it and I'll follow you over the goal line. I had so hoped to see the doc today and get started but we have an ice storm in Atlanta so here I sit waiting. I started reading Anti-cancer. Great book. It's better when you kind of understand how this beast works. Ready to go and kind of stuck, but like one of the other guys said, maybe it's better to slow it down a bit. I know I feel better mentally. Accepting it, getting ready for the journey. All you guys are great and I am so happy I found this group. I'm sure I have only started to lean on you guys.

Mojo and take your time!
It's hard but your docs should map out a plan for you and let you know your options, etc. Obviously what you'll be doing treatment wise will determine what you'll have to deal with.

I'm right in the middle of treatment now. Mine was discovered sorta in reverse order from usual, I think. Had a lump on my neck. The docs had said there was only a tiny chance of it being cancerous since I don't smoke, and they did a needle biopsy that came back clean, so I took my time getting what I thought was just a cyst taken out. Had a batch of gigs w/various bands and things at church in October, so I had surgery in Nov., week before Thanksgiving, when they discovered it was cancer. So they took out the tonsil and those 2 nodes and an additional 18 more.

They believe they got everything, and it was very localized, so prognosis is quite good, especially since I'm otherwise fairly healthy. BUT, just to be safe I'm doing daily radiation (M-F) and once a week chemo. Having all kinds of crazy side effects, lost sense of taste, no beard growth on left side where the zapper is shooting me, raw mouth inside on left side, chemo hiccups for a couple days a week following my magic kool-ade IV, etc. Also lost about 15 pounds, which is actually a good thing (I was overweight), so long as I don't get anemic.

Saw both my chemo and radiation docs today and everything is looking good so far. About halfway done!

Also, I have a very bosstastic neck scar like Clint in "Hang 'em High" now!

So, it ain't all pretty. But frankly if I can get through it I bet anybody can. I really think a good attitude is very important. Honestly I find if I laugh at it, it has no power over me.

Be well!

mwellsg

BrianKrashpad said:

Mojo and take your time!
It's hard but your docs should map out a plan for you and let you know your options, etc. Obviously what you'll be doing treatment wise will determine what you'll have to deal with.

I'm right in the middle of treatment now. Mine was discovered sorta in reverse order from usual, I think. Had a lump on my neck. The docs had said there was only a tiny chance of it being cancerous since I don't smoke, and they did a needle biopsy that came back clean, so I took my time getting what I thought was just a cyst taken out. Had a batch of gigs w/various bands and things at church in October, so I had surgery in Nov., week before Thanksgiving, when they discovered it was cancer. So they took out the tonsil and those 2 nodes and an additional 18 more.

They believe they got everything, and it was very localized, so prognosis is quite good, especially since I'm otherwise fairly healthy. BUT, just to be safe I'm doing daily radiation (M-F) and once a week chemo. Having all kinds of crazy side effects, lost sense of taste, no beard growth on left side where the zapper is shooting me, raw mouth inside on left side, chemo hiccups for a couple days a week following my magic kool-ade IV, etc. Also lost about 15 pounds, which is actually a good thing (I was overweight), so long as I don't get anemic.

Saw both my chemo and radiation docs today and everything is looking good so far. About halfway done!

Also, I have a very bosstastic neck scar like Clint in "Hang 'em High" now!

So, it ain't all pretty. But frankly if I can get through it I bet anybody can. I really think a good attitude is very important. Honestly I find if I laugh at it, it has no power over me.

Be well!

Cool
Thanks. I start next week. Find out what i have and what I have to do. I like your laid back attitude. I will do my best to emulate it.

connieprice1

Base of Tongue locallized to lymph nodes in neck
It sounds like you have Base of Tongue cancer as your primary that has spread to a couple of lymph nodes in your neck. It is probably squamous cell carcinoma, the good news is it can be treated. The first thing you need to do is line up your treatment with a good cancer treatment center. My wife is being treated at MD Anderson Cancer Treatment Center in Houston, Tx. and this hospital may be the best treatment center in the world for cancer. You will be doing chemotherapy followed by radiation treatments more than likely. My wife's lymph nodes in her neck swoll to the size of a golf ball and the tumor was getting a head on it so it could break through the skin. I remember how anxious we were to have the tumor in her neck removed by surgery because it had become so large and how sick we were to find out that their would be no surgery. She was prescribed 9 weeks of chemo in 3 week segments. She would do induction chemo the 1st week ( Cisplatin, Doxitacel, Cetuximab followed by 96 hours of 5FU with an infusion pump) the 2nd week she did only 1 IV of Cetuximab and the 3rd week she did nothing. After her 1st treatment the swollen lymph nodes shrunk to almost normal and after the 2nd treatment they were back to normal size. She was not able to do her 3rd treatment due to side effects causing her colen to become severely inflamed. This past week she had another CT scan and the tumors were no longer present on the scan so she is starting radiation treatments at the end of this month. She will be doing radiation treatments 5 times a week for 7 weeks to make sure their are no more cancerous cells. I hope this info helps you understand more about your probable treatments, remember I am not a doctor and of course your doctor will prescribe your treatments. As for working, you may be able to work through some of your treatments and it is good that you are in good physical shape. I hope this helps and goodluck to you. Connie's husband, Homer Price

mwellsg

connieprice1 said:

Base of Tongue locallized to lymph nodes in neck
It sounds like you have Base of Tongue cancer as your primary that has spread to a couple of lymph nodes in your neck. It is probably squamous cell carcinoma, the good news is it can be treated. The first thing you need to do is line up your treatment with a good cancer treatment center. My wife is being treated at MD Anderson Cancer Treatment Center in Houston, Tx. and this hospital may be the best treatment center in the world for cancer. You will be doing chemotherapy followed by radiation treatments more than likely. My wife's lymph nodes in her neck swoll to the size of a golf ball and the tumor was getting a head on it so it could break through the skin. I remember how anxious we were to have the tumor in her neck removed by surgery because it had become so large and how sick we were to find out that their would be no surgery. She was prescribed 9 weeks of chemo in 3 week segments. She would do induction chemo the 1st week ( Cisplatin, Doxitacel, Cetuximab followed by 96 hours of 5FU with an infusion pump) the 2nd week she did only 1 IV of Cetuximab and the 3rd week she did nothing. After her 1st treatment the swollen lymph nodes shrunk to almost normal and after the 2nd treatment they were back to normal size. She was not able to do her 3rd treatment due to side effects causing her colen to become severely inflamed. This past week she had another CT scan and the tumors were no longer present on the scan so she is starting radiation treatments at the end of this month. She will be doing radiation treatments 5 times a week for 7 weeks to make sure their are no more cancerous cells. I hope this info helps you understand more about your probable treatments, remember I am not a doctor and of course your doctor will prescribe your treatments. As for working, you may be able to work through some of your treatments and it is good that you are in good physical shape. I hope this helps and goodluck to you. Connie's husband, Homer Price

The treatment
...your wife received is pretty close to what they are recommending at NE Georgia Cancer Treatment Center. Good to see someone else on the same path. All the best to your wife and to you.

krl4044

ekdennie said:

some basic facts
here are some basic facts...no flowery stuff

1. find out what type of tumor it is, what stage, what grade, etc.
2. ask what are the best treatment options
3. if you don't like anything your doctor says (other than that you have cancer) get a second opinion
4. if you need surgery, radiation, chemo, or a combo of them, ask in what order you should have it for the bet results.
5. tell your wife...she will know something is up...she will need to be able to take care of you when you have a bad day...and you will have them.
6. what kind of work do you do? depending on the treatment type you may have to take some time off...others can work through the whole time. it isn't about feeling bad, it may be that you just don't' have the strength some days to get out of bed...but your mental attitude can make those days rare!
7. workout as much as you can throughout the whole process...it will keep your heart healthy, which will help your body heal from the treatments faster.
8. see a therapist the moment you feel sad, anxious, depressed...it happens to most head and neck patients
9.treatments vary. I had surgery and radiation. no one can see my scars...they are inside my nose and the roof of my mouth (my tumor was on my hard palate). I have to wear a prosthetic to cover the hole, but with it in, no one can tell. I have some redness on my face, but with the heavy application of lotions before, during, and after radiation they are minimal. I had huge sores throughout my mouth, but with pain meds and oral rinses they were not as painful as they could have been...for me they were like a mouth and throat full of canker sores. I have also lost some hair, but it is behind my ears, so I wear my hair down when I care if people will notice, otherwise I still wear it in ponytails.
10. you will have bad days, you will have good days. that is just how it goes. you can either worry about what might happen or address those things you can take care of. I chose and still choose to change/ deal with those things I can. I worked out and did as much activity as possible before I began treatments. I made myself get out of bed to send my oldest to school every morning (he was 4 and going to pre-k). I couldn't drive him, but I could wave goodbye, then go back to bed. when it was time to rest, I slept for more time than I did before so that I could keep doing those things that were important to me and my family. I am out of treatment and waiting to see what the ENT says at my next appointment...I am sure I am cancer-free, but until that first scan I can choose to worry about it or I can do the projects I had to put on hold while I was recovering...I am doing my projects.

I know you don't want the fluffy stuff, but I am young (31) and I am going to give you a little. what I wish for you: doctors with skilled hands (if you need surgery), with the right medications (if you need them) to take away you pain or to kill the cancer, with a game plan that will work so that you can be cancer-free one day. wishing for you the anger to fight, the peace to love your family while you fight, and the wisdom to seek help when you need it the most. Oh, and because everyone who has been told they have cancer (my dr told me over the phone, too) A GIANT HUG.

I just found out
I literally just found out. It has been 18 hours. I too have kids. When my oral surgeon started dithering, I knew it wasn't going to be good, so I am off to PET SCAN with a girlfriend this afternoon. You are inspiring. My kids are 12, 14, and 16 and my husband died 12 years ago. I am a Nurse practitioner and have practiced 32 years in Nursing. I am having a hard time focusing on the trivial, and I think my money issues (lousy jobs, not working as much as I need to) haven't helped my immune system. My significant other is my dentist who said watch and wait and I have gotta let go of my anger at him but its hard.
I am a biker (bicycle) mama, a gardener, a music lover, and a connoisseur of fine mountain hikes. I gotta focus on these things to get through. I am 55 but we are both moms and you are very inspiring.
Marge

sweetblood22

krl4044 said:

I just found out
I literally just found out. It has been 18 hours. I too have kids. When my oral surgeon started dithering, I knew it wasn't going to be good, so I am off to PET SCAN with a girlfriend this afternoon. You are inspiring. My kids are 12, 14, and 16 and my husband died 12 years ago. I am a Nurse practitioner and have practiced 32 years in Nursing. I am having a hard time focusing on the trivial, and I think my money issues (lousy jobs, not working as much as I need to) haven't helped my immune system. My significant other is my dentist who said watch and wait and I have gotta let go of my anger at him but its hard.
I am a biker (bicycle) mama, a gardener, a music lover, and a connoisseur of fine mountain hikes. I gotta focus on these things to get through. I am 55 but we are both moms and you are very inspiring.
Marge

Marge
Just wanted to welcome you to CSN, though I am very sorry that you have the need to be here. There are many amazing survivors who have helped me in so many ways, so I encourage you to read and share in the information and support here.

Wishing you well,

Sweetblood

Skiffin16

krl4044 said:

I just found out
I literally just found out. It has been 18 hours. I too have kids. When my oral surgeon started dithering, I knew it wasn't going to be good, so I am off to PET SCAN with a girlfriend this afternoon. You are inspiring. My kids are 12, 14, and 16 and my husband died 12 years ago. I am a Nurse practitioner and have practiced 32 years in Nursing. I am having a hard time focusing on the trivial, and I think my money issues (lousy jobs, not working as much as I need to) haven't helped my immune system. My significant other is my dentist who said watch and wait and I have gotta let go of my anger at him but its hard.
I am a biker (bicycle) mama, a gardener, a music lover, and a connoisseur of fine mountain hikes. I gotta focus on these things to get through. I am 55 but we are both moms and you are very inspiring.
Marge

Welcome Marge
Sorry that you are in a situation to have found us, be we are many and here for you...tons of great people and huge experience base.

It is devasting at first, perfectl normal to go through the gamet of emotions...

I too was 55 in January 2009, when I heard those words.

Tonsil (primary) Cancer STGIII SCC HPV+ and a lymphnode (secondary)...

Nine weeks chemo (three week cycles)
Cisplatin
Taxotere
5FU

Concurrent chemo/rads
Carboplatin - seven weekly
Amifostine - 35 daily
Radiation - 35 daily

So far all scans have been clear and clean....

Start a new post and introduce yourself....

Thoughts and Prayers,
John

Paintslinger

Diagnosed as brachial cleft cyst
I developed a large lump on my neck last year. It was diagnosed as a brachial cleft cyst (google it for pictures if you want to). A biopsy was done and there was no cancer in the fluid in the cyst. The docs told me that I was fine but it (the cyst) should come out. It was removed last July and--low and behold--they found cancer in the base of it where the needle couldn't reach. The pathologists were shocked because nothing indicated cancer.I, too, was as healthy as a horse (and strikingly handsome: NOT !) In fact, the docs told me that several pathologists were called in to look at the samples because they didn't believe there was cancer. It was HPV positive squamous cell carcinoma but they didn't know where it was coming from. Turns out that the PET scan showed a tumor at the base of my tongue that had metastisised (stage four) into a lymph node in my neck. If that "cyst" (actually a very enlarged lymph node) had not shown up, I would never have known about the cancer.
I subsequently underwent a seven week treatment involving chemo and radiation which I finished in October. I had my first post-treatment PET scan in April and I'm cancer-free (for now). I'm not going to sugar coat this. The treatment you're probably going to get is rough, but you'll make it through it. If you want specifics and advice about what you might be about to go through, I'll be more than happy to provide both (although everyone's reaction to treatment is different). You're more than welcome to e-mail me and get my number and we can talk if it might help.Be grateful that you found this site when you did, there are some very, very good people here. Hopefully you've got a good support group of family and friends (I certainly did); you're probably going to need them. A sense of humor helps too. An irreverent sense of humor is even better!
Take care,
Paul (Paintslinger)

Sue22

mwellsg said:

The treatment
...your wife received is pretty close to what they are recommending at NE Georgia Cancer Treatment Center. Good to see someone else on the same path. All the best to your wife and to you.

I'd say...
I'd say ''like'' (facebook) to all of your answers to help out MW. You people are awesome and sooooo honest....in order to help out the most you can.

MW you are in good hands and I wish you all the luck in the world.

Sue