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stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi everyone, just joined. I was diagnosed friday. Have a large mass on the right side of my
neck. What started out as a small bump on dec 7th, has turned into this in that short length of time. Neck dissection scheduled for this coming frday. I am pretty frightened
by this whole thing but I know that GOD will take care of me. Please bear with me as I am new to this kind of thing and I am a two finger typist. Any help any of you could give me
would be greatly appreciated. This seems like the place I need to be for help and
encouragement.

Hondo's picture
Hondo
Posts: 5791
Joined: Apr 2009

Hi buddy I know the feeling of being a little frighten when you hear the word Cancer, especially when the doctor is tell it to you. Just to let you know there is hope and there are many of us here who have lived through cancer treatment more then once. You have a great start by putting your faith in God first, He will lead you to the right doctors and the right treatment, Just believe and keep positive.

Do you know what type of cancer you have, it will help to know as there are many others here who can give you guidance.

Take care my friend may the God of our fathers keep you in his care, God bless

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hondo

All that I know is Squamous cell carcinoma. I think I have a great doc though he is not
wasting any time. The referral process is what frustrates me the most. Have a busy week
next week. By the way, thank you for responding. I know this site will help me very much.

Hondo's picture
Hondo
Posts: 5791
Joined: Apr 2009

You are right, there is a lot of help here on CSN, I will be looking forward to your post.

I pray that God will watch over you while you are in his work shop

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Stevenl- I would advise you to get everything in order for the path ahead. As I've stated many times, I did not, and suffered a lot more than I had to at the end of my week #1.

You mention neck dissection. To be followed by Radiation? Or Chemo?

Ask your Onco/ENT Drs. if they've found the Primary (the core source of the C).

If you are to get both C&R treatment- and the treatment will impact your ability to eat- will you need a feeding tube?

Get the prescriptions for any possible medicines needed filled, and be very active along these lines with your Drs. Don't hesitate to ask them what you need to do, and what they can do to help you thru this.

Please keep us informed, and don't hesitate to ask us questions. We are here to help.

Believe.

kcass

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi kent

Thanks for your response. Here is what I know thus far; unknown primary now. That WILL
be found this Friday. Unknown what the treatments will be but my ent said that this is
stage 4 and said that rad and chemo would follow. Have not met with either doc yet. I go for more scans tommorow and my pre op also. I meet with dentist thursday. I do not know what questions to ask so that is what I need help with, i.e. the feeding tube and things like that. What is a PET scan? My scans tomorrow are chest and abdomen. Do I need to ask for more? I look forward to your posts also to help me through this mess. The whole thing is probably my fault as I have smoked for 40 yrs and I do like my beer. Don't get me wrong,
I am not condemning my self just wanted you to know a little history. God is greater than this and he is going to take care of me!!!!!

MarineE5
Posts: 754
Joined: Dec 2005

Steven,

Kent touched on allot of good points. May I suggest that you either take a notepad or another person along with you this week as allot of information will be thrown at you.

I would also like to suggest a Peg Tube up front before your Radiation and Chemo. I did not have Chemo. 30 Treatments of IMRT Radiation. The sores in my mouth and throat were pretty big, between the size of a nickel or quarter. Eating will be a big issue and you will need all the calories and nutrition you can get in yourself during all this time. My Peg Tube was inserted during my Surgery for Base of Tongue Cancer and Neck Disection.

My Best to You and Everyone Here

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Marine E5

I have a son-in-law that is army E5. Thanks for your post. This feeding tube thing
scares me. I believe you when you say it was a good thing and I will definitely inquire
about it. Like I said, I do not know what the treatments will be yet. If you don't mind me asking, what was the neck dissection like? Judging from the size of the mass, I am pretty sure that mine will be radical. I can't tell you all how much your posts are helping me.
I hope you don't mind me adding you as my friends. THANK YOU ALL SO MUCH.

Steve

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

You didn't say if you're also going to get chemo and/or radiation. If you're getting radiation, don't be scared of the PEG (feeding tube): The PEG is your friend.
I don't understand why doctors don't just require their patients to get a PEG before they embark on this treatment. My doctors were very no-nonsense about it: They told me in no uncertain terms that I was to get the PEG put in before my treatment began.
In retrospect, that made sense. You don't want to go through the hassle of having the PEG put in when you're run down and physically and emotionally stressed from rads and chemo.
I went from 195 pounds to 155 pounds during my treatment, and I don't know what I would have done without the PEG. Starved, probably.
As for the dissection, three months after my chemo and radiation ended, I had to have a modified radical neck dissection. The surgery wasn't so bad -- heck, you're under general anesthesia anyway, so you don't notice it -- and the recovery wasn't bad. I spent two nights in the hospital after surgery. There was pain the first day, but meds knocked that back pretty well. The weird thing is, while you're under they implant a tube in your neck. It drains fluid into a little bag at the end of the tube. You have to empty the bag periodically, measure what comes out of the bag and keep track of it. Once the drainage subsides to a certain level, you can have the tube taken out. It took me close to a week. My surgeon also did a very good job on my neck. I wasn't left disfigured, but if you look closely at my neck you can see that something happened there.
In neck dissections there is a danger of nerve damage and shoulder problems. I'm sure your doc has or will go through all that with you. My shoulder came through just fine, but I did suffer a bit of damage to a nerve on the side of my face. If I open my mouth as wide as I can, the right side of my mouth doesn't open quite as wide as the left side. My smile's also a little lopsided. But hey, if that's the worst thing that I get out of Stage III tonsil cancer, I've been blessed.
You've come to the right place for information and support. We've all been through or are going through what you're facing. Please keep us informed.

--Jim in Delaware

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Jim

Thanks for the great info. It seems that everyone is different in the steps that are taken.
I first went to my Primary, then had a scan of the mass and then to the ENT. Oh Yea, one week wasted taking antibiotics, then the referral then the scan, then another referral, then the ENT on Fri the 8th. He actually told me he was 95% sure it was cancer then. went for a needle biopsy and back to see him last Friday. I guess because the mass is so obvious
he has chosen the neck dissection first to remove it and find the source. The ENT told me that Chemo and rad would follow all of this. I can tell you that this thing on my neck is angry. But it doesn't know who it is dealing with!!! So, with all that being said, I get great comfort in knowing that the peg will be my friend,and getting to talk to you all about this seemingly hard road I am about to travel down. Keep the great posts coming because they are helping me tremendously. Thanks to everyone!!!

Steve

MarineE5
Posts: 754
Joined: Dec 2005

Steven,

Please thank your son-in-law for his service to our Country. I had the Radical Neck Disection. Had roughly 30 lymphnodes removed as well as the SCM muscle. I had 1/3 of my tongue removed, a tracheotomy, and the Peg Tube.

I can honestly say that I was not in any pain after the Surgery. Of course they had me on a drip for a day and a half. Then regular pain meds. Once I got home. I basically took over the counter pain med's. I was Blessed from above and a wonderful Surgeon. I had no choice as to whether I would have the Peg Tube because of the Thracheotomy. The Peg Tube can be alittle uncomfortable if you bang it or sleep on it, not clean it as instructed, but is a life saver. Yo will do fine with it if you decide to get it. It is better to get it before the Radiation and Chemo as you will be run down during that time and to go under another procedure at that time will be taxing.

As I mentioned, I had the Radical Neck Disection. It was several weeks after my final Radiation treatment that my neck and face reacted to swelling and stiffness. I questioned my Radiation Oncologist and found out that I was experiencing Lymphodema, the back up of fluids in the Lymphnode system. I was sent to a Cancer Physical Therapist and she showed me what I needed to do in order to fix the problem by doing a gently massage and stretching when needed. Just a extra little thing to add to my day, but it is all good.

I'm not that familiar with this site as I have recently come back after forgetting I was here in 2005, Duh. If there is anyway we can send private messages, I'll give you my phone number or you send me yours whatever works and I'll try to answwer as many questions as possible.

I was fortunate when I found out I had this. A neighbor that I really didn't know too well came up and knocked on my door one night and told me another neighbor had told him of my cancer. He had Tonsil cancer 7 years prior to my cancer and explained what more than likely was going to happen to me. He was spot on, so I wasn't in the dark about everything. He is now 12 years out from his last treatment and works full time. He was roughly your age (37) when he got his cancer.

This board is here for questions and answers, so ask away and someone will answer. I don't mind you adding me to your friend's list. We are all bonded together here whether we ever met in person or not. My thoughts and Prayers are with each and everyone here daily.

My Best to You and Everyone Here

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi MarineE5
We can post private messages and I just found out how. You go to the home page and go to the middle blue box "Connect and Communicate", my daughter is typing this so she's much faster (yes I am, he's sloooow), then you click on "CSN email", click on "Write a New Message" then either type in the screen name of the person you want to send a message to or click on "My Friends" and you can pick from your friend list. That way we can communicate privately.
For everyone else reading this, I know there are some sensitive things that each one of us go through personally that we can communicate privately better, so please no one stop posting me and helping me.
Thanks Marine for the offer and I look forward to hearing from you.

Steve
P.S. She figured all this out. She's a good girl.

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

Welcome Steven:) You came to the right place:) All, or most of you questions you have you will be able to find here. And with tons of support!

Cindy

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Cindy

Can't wait to go crappie fishing again after all this is over!!!!!Thanks for your post.

Steve

txparadise50
Posts: 2
Joined: Jan 2010

Loves you very much Stephen. WE will get through this together as a family and you will be a testimony to hundreds of people as a cancer survivor and to the power of God. Satan will be behind us and God will lead us forward!!!

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi sweetheart. You bet we will make it. No doubt no question. Failure is not an option.
Love ya

Steve

Chefdaddy
Posts: 164
Joined: Dec 2009

Hi Steve,

Welcome to this very supportive place. Almost everyone posting here has been carry me through
as they will you to. Their support and compassion are never ending.

I was diagnosed with Squamous Cell with an unknown primary which started with a swollen right lymph node in my neck. Even after the PET scan they don't know the primary. So far the lymph node and both tonsils have been removed. I just had all my teeth removed and waiting for them to heal enough so that the radiation can begin. Due to pre-existing neuropathy in my legs and hands the doctors chose to use Erbitux instead of chemo which could greatly increase the neuropathy.

My prayers are with you Steve and so are everyone else's here.

Chefdaddy

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey chefdaddy

Thank you so much for the encouragement. Having been on here for about 20 hrs now, I can truly see the compassion and I am blessed to have been led here by the lord. Keep me posted on how things are going and I will lift you and everyone else up in prayer! God bless

Steve

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Jim's post is correct, if your Dr. advises that you may have trouble eating. All is pending the results, of course, of your Op, and the Pet. I've had my PEG for a year, as well as the Port. The best advice is to have them put in before the C&R before treatment begins. Only an Outpatient Op for me. Got all my nutrition thru the tube for 7 consecutive weeks, and still lost over 17% of my body weight. And, getting the Port and feeding tube is no big deal- only a nuissance that you may end-up regarding as a critical necessity. Seems ugly, but the tube is no big deal.

As for the Pet- a scanning open-MRI style. First, they shoot a combination of sugar water and radioactive isotopes into you, then you lay there for some 45 minutes letting the stuff work it's way thru your body, then you have the scan done. And, afterwards, you drink a lotta water to help flush your system. Simple as that.

I had no neck dissection, so I cannot speak of such. Route my Drs. took was to just kill the C with full head and neck Rad, and Cisplatin and Flourouracil chemo.

The suggestion to write down the questions is good advice- it is what I did long ago.
What C&R are you gonna put me thru? How wide-spread do you think the C is?
Side-effects to treatment?
Chances of survival, and any lasting physical changes?
What prescrips should I have lined-up at the start of treatment?
Should I get a PEG; and, if so, who do I contact about the formula that will be my food?
What should I be doing now- gargle with salt water and baking soda?
(If you are experiencing sleep/emotional problems)What help can you prescribe to help me deal with this?
Will the pain get bad, and what will you give me to help me endure it all?

There's more I, and others, can help you with when you know more about your treatment specifics. We, here, are all positive when it comes to the C= we are all proof that one can survive it, as we have. It is no easy road, steven, but modern med does make that road passable. You must always be open with your Onco and ENT about difficulty you are having. You may come to know your own infamous skull mask, for instance. Not fun. Most of us keep our's. MY BEST ADVICE is to only think positive- keep your focus on the successful end of treatment we all have come to find, and know for a fact that you will get there. If you are one of Faith, then this is a good time to ask for the Lord's help. Footprints in the sand, Steven- many of us know that we are Witness to that in our live's. Bottom-line: believe you can get thru this to a victorious end, and you will. All of us have, and so will you.

Believe.

kcass

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

HI Kent

Thanks so much, yes I do believe and I am counting on Him for strength, guidance,and full recovery and healing. Keep me in your prayers as I will for you. Heard just a little about the skull mask, sounds like another thing I,m not going to like too much. It's okay though
I have a wonderful wife and kids (not kids anymore) that are really helping me, and now I have a lot of new friends to help me too!!!. Thank you all so much my prayers are with you all.

Steve

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Steve,

Hoping for all the best for you.

I got my mask made last Tuesday. It wasn't fun, but it was doable - not as bad as I'd feared. Oddly enough, the technicians talked to me during part of process, and, of course, I tried to nod my head a few times. I just kept telling myself that I was OK, and able to breathe just fine. Some people imagine themselves somewhere else during the mask-molding procedure (and treatments), some try to meditate, some practice visualization, some listen to music they've selected (ask your dr or technicians what you can do - I can't have headphones, but they will play a CD or radio for me).

I also have a PEG (dr. just said "you're going to need it - you should get it while you're doing well, and are not malnourished"); it's another thing I don't like, but it's doable. I can eat orally, and I just started doing tube feedings to add calories to my day and make sure my body can tolerate the formula. I'll start radiation in a week if all goes according to plan.

A couple of people have made the comment "We do what we have to so that we can do what we want to". Sounds like you've got plenty of motivation to really apply yourself, and do the things you have to do. I look forward to hearing about your successes.

All the best,
- Pam

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Pam and Steven- the mask is as the mask is. Again, the best way I found for getting thru full rads (20 places/session) was doing 1/2-tab of Xanax within an hour before each session. Just stating, again, something I hope you two will consider. Did help me. As a little something extra I found, which I hope neither of you need, I found that holding my mouth in a position of overbite- with my teeth in a position with my uppers in front of my lowers- was very helpful during the Rads. Just something for you to remember.

Pam- I used 4.0 formula. Only needed 4 feedings/day, rather than the 7 with 1.5. Cheaper, too. Would suggest you throw this past those who will be providing you with the formula, and give it a try.

Hope you two stay active on the forum. You will each have issues with questions. All you have to do is ask those questions. Realize that most of us have been thru what you are about to, and some of us far worse than you, or I, will experience. Just something to remember. You will both get thru this, as all of us Vets have (I'm 14-month), and this is not a time for you to be weak- stay positive, knowing you can get thru this, as we have.

Believe.

kcass

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey again Kent,

Not able to sleep to well this weekend. I am a bricklayer so I am usually asleep by now.
Saw your post and wanted to respond. Regarding staying active on the forum, there is no question that I'm gonna hang around and bug you guys for awhile. I have learned more in
the past 24 hours than I thought possible. Like I said i do a ct and pre-op tomorrow.
See my rad onco on thursday and oral surgeon also on thursday. Don't know about the other
onco yet, but hopeful for tuesday or wednesday. So it has been 14 mths for you, that's great, gives me great hope. After reading your posts I know now not to try to be the tough guy that I think everybody sees me as. Believe me I've had a couple of good crying periods this weekend. I will ask the docs for whatever will help me and your advice gives me a lot of knowledge on what I can ask for. Thanks for your help Kent, and God Bless. You will be in my prayers.

Steve

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Thanks, Kent for the tips. Wish I'd known before I had my mask made about the teeth position. Apparently, I must've been clenching my jaws while the mask was being made, so now for treatments, my teeth are tightly in overbite position - ugh. Rads tech said that's the way they should be (sigh).

Although I was prescribed Isosourse 1.5, pharmacy delivered "regular" (75 fewer calories per can). Nutritionist is having that straightened out. They were pretty inflexible on what I should have (I just found out I'm diabetic, so asked about sugar-free options, and got shot down). I will say, I "felt" a difference between the regular and the 1.5.

I did mention medication to help calm me to my rad dr's nurse, who said "you won't need it - some people do - if you have a problem, we'll look into it". When I did my trial run yesterday, I did get anxious, because the mask has to press on my throat, and I have tumors there (so I mentally do not like anything to touch or put pressure on it), and the mask makes swallowing my saliva more difficult. But I was OK. I also cannot open my eyes in the mask - I'd heard that some people keep their eyes open during treatments, and I would have liked to have that option, but it's not happening. I just kept talking to myself in my head. I let my family know that if I have problems Monday, I will get and use a prescription to help me feel less stressed.

As always, Kent - I love to read the comments from those who've stepped into the breach before me, and see that they made it through, so I can surely hope to follow in their footsteps. Thanks
- Pam

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Pam,

I have to say that I am overwhelmed by the responses I have received so far on this web
site. Its great to hear from you Pam and know that my thoughts and prayers are with you
this evening. The info is great but I dont know much of your history. Have you had any surgery so far or are you having rad only? You sound like a pretty tough person, so I think you will do fine. As for the PEG, you say you can eat orally and I did not know that was
possible. Just have not had time yet to research it. Forgive me, I have only just begun this journey. If you get a chance fill me in a little more on your journey so far and I
will begin right now to include you in my prayers. Hang in there and God Bless!!!

Steve

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Hi Steven,

I appreciate your prayers for me - just returned the favor.

As for my history - I was diagnosed end of Oct. with Stage 4b Base of Tongue with lymph node involvement (the huge node is what got me to the dr). I have not had surgery for my cancer, and drs and surgeons did not recommend it. I had open biopsies Oct. 26 with the understanding that they'd take my right tonsil if they needed to. They took it, but it was cancer-free. Ah well. I started Induction chemotherapy Nov 19 (after "interviewing" two radiology oncologists with differing opinions on chemo - was scared and confused and running myself in circles in my head). I finished induction chemo two weeks ago. I will begin radiation treatments on Monday (I have cold symptoms, so now I'm nervous about that). So, I can eat orally again (couldn't for a while after tonsil removal) because I haven't started radiation (rads) yet. From reading posts, I expect to continue eating orally for a while and plan to KEEP SWALLOWING as much as possible. Posters stress that a lot - hope I don't get wrapped up in the rest, and get lazy on trying to swallow.

If you have a tonsillectomy - I found using a cool mist humidifier made a huge difference. I also slept propped up (yes, it was irritating). I also set a timer for drinking (and something else I can't remember now). Be aware - your uvula will probably get HUGE. I was told there'd be some swelling - such an understatement - I thought it would choke me - of course, it didn't, but it was distressing. Another word of wisdom - careful of checking tonsillectomy "sharing" websites - I hit a couple, and they were filled with horror stories, and people going into great detail about their awful experiences. Of course it's not fun (and I felt plenty sorry for myself), but I found my experience to be much less traumatic than the vast majority of those posters. My one other major tip - don't even try to close your mouth when you sneeze.

I'm assuming after your busy day with the triple dr. whammy, you're having down time this weekend. Hope you get some rest for the next steps.

Almost every single person I speak to who has a port (I don't - just a PICC line that starts in my upper arm, then travels to the same place most ports go, I think) is grateful to have it. Hope if you have a Port and PEG they can do them at the same time. It seems to me a lot of people (myself included) have complained about a lack of adequate support when it comes to their PEG feeding tube (mine's a G-tube - goes into the stomach). Hope that's not the story for you, but if so, people here have lots of useful tips; I even have a few, and I'm a newbie to it (got my PEG Christmas Eve, just started using it for feedings last week).

Wishing (and asked for) all the best for you during treatment, Steve. Good to hear you're on the move for the fight - it took me a while to get kicked in, and I didn't like doing nothing else while I recuperated from surgery. Keep up the good work.

- Pam

ballonk's picture
ballonk
Posts: 54
Joined: Mar 2004

Steven, I had a radical left neck dissection in July 2003 as a result of squamous cell carcinoma (SCC). I was originally diagnosed in 2001 with SCC on the left side of my tongue. I had surgery at that time; no radiation or chemo required. I visited my ENT every few months for a follow-up visit and was doing fine.

In 2003, I had a lump pop up on the left side of my neck which turned out to be a reoccurrence of SCC, requiring that I have a radical left neck dissection followed by radiation treatments which ended in December 2003. My surgery lasted about 11 hours; the first 2-3 hours the ENT spent scoping everything he could reach looking for additional cancer spots. He found none. He also removed my tonsils during this surgery as a precautionary measure. I spent two nights in the hospital and recovered quickly from the surgery. The most pain I had was from the tonsillectomy; not the neck dissection. I did not have a feeding tube during radiation treatments but did have to take pain medication for a few months in order to tolerate swallowing. I have numbness from my left ear down to my left shoulder, my left arm is weak and I cannot lift it over my head and my face and neck area is a little "lopsided" from the surgery but I have no problem with that; considering the alternative. I had difficulty swallowing and choking on food for a while after radiation treatments but my ENT dilated my esophagus (under mild sedation) twice over the past 6 years and that has helped a lot.

I know cancer is a very scary situation and can only advise that you keep yourself informed and keep your faith in God. With my first cancer occurrence, my 5 year survival rate was at 85-90%. After the second occurrence the cancer had spread to the lymph nodes in my neck so my 5 year survival rate dropped to about 40%. This past December (2009), I reached my 6 year mark without another occurrence. So many positive things have come my way as a result of having cancer and while I would not want to experience it again, I have no regrets about having to travel this journey and I hope I can help others along in the process.

While my doctor will not declare me "cancer free"; he feels I am out of the woods. There's no guarantee that it won't come back again, especially since it got into my lymph nodes. But I refuse to spend whatever time I have left here on earth worrying about something I can do nothing about. I've put this in God's hand and have prepared myself to die as best I can but I practice "guarded optimism" that God will allow me more time on this earth to be with my family and friends. However, I'm fully aware that it's not my call and that His will - will be done.

Be strong, go with God! Please don't hesitate to contact me if I can be of any assistance.

Kathy

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