Just Diagnosed

Shell_7801

Hondo said:

Hi Shell

Hi and Welcome to the family here on CSN. Please understand that because you have cancer your life is not over it will just change a little that’s all. Many of us here are old timers and we stay here just to help people like you who are just starting the fight. You will get through this and you will be a survivor, something’s will change a little but in the end you will be alive to see your grandchildren. For now please keep posting and ask as many questing as you need.

 

God Bless

Tim Hondo  

I see a lot of posts from you

I see a lot of posts from you Tim.  It is a very special person who doesn't leave the rest behind when they are "cured".  I want to be an old timer too.  Of course my husband is the center of my universe but those grand babies are eveything to me, life worth living just to see them.  I already had my plane ticket bought to be there when our daughter has her second, the first grand daughter.  I cannot stop breaking down knowing I'm not going to be able to make that flight now.  She says she'll skype me from the delivery room!

Shell

Shell_7801

hwt said:

Shell

Glad you found us. Nutrition and hydration are going to be key to making this easier for you. Eat whatever you can now to pack on a few pounds. My cancer was of the jaw 01/2012 with spread to some lymph nodes. Yes, mets to lung is a possibility but don't borrow trouble, majority here have not seen that happen. I had two recurrances but neither to lungs or liver and both resolved. My last PET was no evidence of disease. Will have another PET 09/10.  My advice is to "take it as it comes and deal with it". Don't waste energy with worry about things that may or may not happen. Things will move quickly so I suggest getting a calendar for doctor appts. Radiation itself is only about 10-15 minutes a day and does not hurt, it is the side effects that are challenging. You will have some side effect but not all and they come in varying degrees. My original chemo was Cisplatin. My worst side effect was sores on my lips and fatigue. I won't sugar coat it, it was rough but we all make it through the nasty tx. You can do this!

Candi in STL

Well I don't want it sugar

Well I don't want it sugar coated.  I've had fever blisters on my lip and cheek since I was a small child.  Right before they wheeled me into surgery a fever blister festered in under 30 minutes.  They are triggered by stress. I'm worried the blisters will be all up my cheek.  Your two recurrances where caught on the monthly visits you had?  How did they resolve them?  I heard rad's are not effective 2nd go around.

Shell

Shell_7801

CherieLW said:

Hi Shell!
I myself have not

Hi Shell!

I myself have not been affected by cancer, but my father was who I am extremely close to.  I know that many ppl on here who have lived it can give you wonderful advice as they did my father.  So sorry to hear that you have to go through this, I'll be praying for you the whole time.  I can't think of many things more devastating than cancer... 

I know one thing is that trying to stay as positive as possible and having support are 2 of the greatest things.  Because of those, my dad has thrived and stayed more positive than anyone I know of in his situation.  He had sinus cancer and 2 lymph nodes affected.  He lost his taste, had a peg tube (which despite sounding scary- was not and was such a lifesaver!).  He is now just hand in hand with Shawn's brother- a little over a year out of treatment and cancer free!  

It's amazing what technology can do these days!  I think going through this now would greater anyone's chances of longer survival versus even 5 to ten years ago! It was amazing when I first visited this site the amount of support and watching people's stories/progress.  You will be amazed.

Prayers!

Cherie 

Thank you Cherie,
Your dad is

Thank you Cherie,

Your dad is lucky to have such a loving supportive daughter.  The positive thing is slowly creeping into my mind.  So far I've enjoyed the humor of my friends.  Laughter is a great medicine.

Shell

Shell_7801

Laralyn said:

Hi, Shell! Welcome to the

Hi, Shell! Welcome to the group we wish no one else ever had to join. :-)

It's not just the end of some things for you--it's also the beginning of other things. Not all of the changes that come with the diagnosis and treatment are bad ones. I feel more alive now than I ever did before cancer. I appreciate things more. I'm more mellow, and more forgiving. I try to value every moment I'm given. 

I had a similar diagnosis: SCC in my left tonsil with soft palate involvement as well as two nodes on the same side. Mine was HPV+. My first recommendation would be to get a second opinion, even if you like your current doctors. You want to feel 100% confident in your decisions and hearing a second expert would send you on the same path is a big help in terms of peace of mind. I think it's also worth a second opinion because there's evidence that in some cases where the cancer is HPV positive you get similar results with and without surgery. If there's a chance that can be true for you (as it was for me--I had no neck/throat surgery), IMO it's worth that second opinion.

Keep posting here and don't hesitate to ask questions. We've all been there and we're glad to help any way we can!

Hi Laralyn,
I already look at

Hi Laralyn,

I already look at life so differently!  And I've become very open about sharing my opinions with confidence.  I've already gently revealed to an associate that I cannot be around toxic people.  I won't judge or criticize them, I just won't associate with them.  The only person I've had to forgive so far is myself.

Shell

 

 

 

Shell_7801

debbiejeanne said:

hi shell, welcome to our

hi shell, welcome to our family.  the one nobody wants to join.  i'm sorry you need to be here but glad you found us right away.  i didn't find it until after tx and I really missed out on a lot of very important and needed information.  ask any/all questions you have.  i'm sure someone will be able to share their experience with you.  come here if you want to vent or if you feel alone or if you want to share that you had a good day, whatever you feel.  as long as you come here, you will NEVER be alone.  we will ALWAYS be here with you.  we will be on the sidelines cheering you on.  we will even pull you along when you feel like you can't put one foot in front of the other.  we are now family and that's what family does.  as for it spreading, i'd just worry about what has been found, not what someone says may happen.  the tx is tough as the others have said, but also like they said, we are here to share our stories.  we made it and so will you.  start writting down any questions you have so you don't forget to ask them.  leave room to write down the replies.  if you have a hand-held recorder that would be even better.  if possible, have someone attend doc visits with you, 2 sets of ears is always better than one.  create a calender for your treatments so its easier to keep them straight.  plus you can mark them off as you do them.  as you go thru this, i'd get copies of every test i have done and keep them for your records.  if you get them as they are done there is usually no charge.  if you wait until later when there are many, they will charge you, at least that's how it worked with me.  i have a notebook with all my info in it from my dx and rad dosage tx to the last throat dialation i had done in June.  I will be praying for smooth tx and with few side effects.  please keep us posted on your progresss and remember we are here for you.

God bless you,

dj

DJ that dog is just too cute!

DJ that dog is just too cute! I plan to get copies of everything.  Luckily I have AFLAC and I have to send them tons of paperwork.  See there's a good thing!  I'm going to get my moneys worth for those premiums!  God bless you too for being so kind.

Shell

Shell_7801

Jeff2159 said:

Your Life is Not Over

It is just taking a different direction. I won't sugar coat it the road is rough but it is doable. You need a positive attitude and hopefully support from family and friends. You will have many bad days as rads and chemo can be rough but it does get better and you will have good days too. After treatment you might smile and pat yourself on the back for surviving what you had endured. Take it a day at a time because there is not much you can do except be positive.

good luck

Jeff

I'm going to rely on humor.

I'm going to rely on humor.  I've already started my rant on why I got throat cancer and not a pretty pink feminine breast cancer instead.  Breast cancer is not caused from smoking, it is not self inflicted and judged like throat cancer.  The old Polish woman in my family have been making their comments already.  Family, yikes.  I told them that it may not be from smoking, it may be from HPV-16 that I could have contracted while giving oral sex to some one prior to my marriage. That seemed to shut them up.

Shell

phrannie51

Shell_7801 said:

I'm worried for my husband

I'm worried for my husband taking care of me like you have your brother.  He is not a "motherly" type and I've already scolded him for not knowing where my discharge instructions were after surgery or monitoring how much pain med's I was taking.  I feel horrible now.  He has no idea how to handle this.  The man loves me unconditionally and I'm going to pray that this brings us closer together.

Shell

He'll figure it out....

When I was first diagnosed, I made arrangements with my sisters, thinking my husband just wasn't cut out for taking care of a sick person, especially me....I had never seen the "caretaking/nurturing" side of him in 30 years.  But he was wonderful.....this is one of the payoffs of this disease.....getting closer to those we love and those who love us.

p

phrannie51

Shell_7801 said:

I'm going to rely on humor.

I'm going to rely on humor.  I've already started my rant on why I got throat cancer and not a pretty pink feminine breast cancer instead.  Breast cancer is not caused from smoking, it is not self inflicted and judged like throat cancer.  The old Polish woman in my family have been making their comments already.  Family, yikes.  I told them that it may not be from smoking, it may be from HPV-16 that I could have contracted while giving oral sex to some one prior to my marriage. That seemed to shut them up.

Shell

LOLOLOLOL Shell.....

I can hardly type, I'm giggling so hard....hahahahahaha......you tell'em!  I'll bet the HPV talk stifled all talk about HOW you may have gotten this....LOLOLOL. 

May as well forgive your ENT, too.....he's going to be your best friend for a long while.  I see my Onc 3 times a year, the Rad doc once a year.....but the ENT every month.....and we've moved into talking about other things other than cancer......he's my bud.

If you gotta cuss, just use an * for a letter in the word.  None of us are going to get uptight.....and keep that sense of humor....I laughed a lot during treatment....maybe it was the drugs??   

p

wmc

Shell_7801 said:

I'm going to rely on humor.

I'm going to rely on humor.  I've already started my rant on why I got throat cancer and not a pretty pink feminine breast cancer instead.  Breast cancer is not caused from smoking, it is not self inflicted and judged like throat cancer.  The old Polish woman in my family have been making their comments already.  Family, yikes.  I told them that it may not be from smoking, it may be from HPV-16 that I could have contracted while giving oral sex to some one prior to my marriage. That seemed to shut them up.

Shell

And also

You might also let them know it can be caused by Acid Reflux as well. Doctores are just starting to refrence this type to acid reflex. Yes I smoked, but the acid reflex is what they think was a major factor in mine.

There are many who get this as well that never smoked or drank. Heavy drinking, smoking, acid reflex, HPV, and the last is; just being unlucky, and none of the above apply.  You will get through this, and why, doesn't matter. That was yesterday, and only today matters.

Bill

PS Loved your Humor.

cureitall66

One day at a time....

Shell,

All I can really tell you is to take one day at a time and don't get to far ahead of yourself. Our minds like to take us to places that we don't need to be when we let them think to far ahead. Deal with today's needs and nothing beyond. Surround yourself with your family and close friends, they will be the ones that get you through this.

I'm a caregiver to a loved one (male, age 53- non-smoker, light drinker) that is 21 months out from treatment. He was dx Aug 2012 with SCC of BOT, HPV16+, 2 lymph nodes involved. No surgery. He had rads 5 days a week for 7 weeks and chemo was once a week for the 7 weeks. Treatment was hard, but very doable. Today, it seems to be a vivid memory and he is doing well. Physically he had a few obstacles, but mentally he is doing very well. In fact, today he is going for his 21 month check up where they scope, probe and prob him. At the end of November will be his 24 month mark and then he will have a chest xray, and blood work to check his thyroid. The teaching facility (U of M) doesn't do any more scans than necessary (they claim they can cause recurrences). He had one prior to tx and one after. The xray is to keep an eye on his lungs.

If you are not happy with your ENT and where you have been referred to for treatment, you should most definitely seek another opinion. We had a board of doctors that reviewed his case and decided on treatment. It was not up to any "one" doctor.

Shell, you will do just fine. Please come here often and someone can help answer your question. Cancer is not a death sentence anymore, technology has advanced tremendously and especially with this type of cancer. This cancer is treatable and cureable, please remember that.

As others have suggested, please review the "superthread" at the top of the discussion board.  It is loaded with valuable information that you will eventually find handy. I will say that if there is any suggestion about a feeding tube, to really consider getting it prior to treatment. Some have done well without it, but some have needed it. My loved one needed it about 3 weeks into treatment and we wished we would have gotten it ahead of time. His throat became too irritated to even consider food. Keep stocked up on Ensure or Boost to keep your calorie consumption up, you will definitely need this. Also, keep drinking water no matter how hard it is to swallow. This is imperative because if you don't swallow during this whole treatment, you could lose your swallowing ability, so DRINK, DRINK, DRINK! 

You will always have plenty of support here, so come as often as you like. We'll be here when you ring the bell that treatment is over!

God Bless,

~C

P.S (Stay off the internet...outdated material there and wording you will not understand and take out of context)

Shell_7801

phrannie51 said:

LOLOLOLOL Shell.....

I can hardly type, I'm giggling so hard....hahahahahaha......you tell'em!  I'll bet the HPV talk stifled all talk about HOW you may have gotten this....LOLOLOL. 

May as well forgive your ENT, too.....he's going to be your best friend for a long while.  I see my Onc 3 times a year, the Rad doc once a year.....but the ENT every month.....and we've moved into talking about other things other than cancer......he's my bud.

If you gotta cuss, just use an * for a letter in the word.  None of us are going to get uptight.....and keep that sense of humor....I laughed a lot during treatment....maybe it was the drugs??   

p

Smile!

I'm creating a list of jokes to tell myself when I want to give up.  I have a whole page about wigs so far.

Thanks for being here P.

 

Shell

Shell_7801

wmc said:

And also

You might also let them know it can be caused by Acid Reflux as well. Doctores are just starting to refrence this type to acid reflex. Yes I smoked, but the acid reflex is what they think was a major factor in mine.

There are many who get this as well that never smoked or drank. Heavy drinking, smoking, acid reflex, HPV, and the last is; just being unlucky, and none of the above apply.  You will get through this, and why, doesn't matter. That was yesterday, and only today matters.

Bill

PS Loved your Humor.

I believe that every cancer

I believe that every cancer is caused by just about everything in life.  No way to avoid it, if it wants you, it will come for you.  I agree to give up quickly on the "why" thoughts and concentrate on the "what do next" actions.

Thanks Bill

 

Shell

Shell_7801

cureitall66 said:

One day at a time....

Shell,

All I can really tell you is to take one day at a time and don't get to far ahead of yourself. Our minds like to take us to places that we don't need to be when we let them think to far ahead. Deal with today's needs and nothing beyond. Surround yourself with your family and close friends, they will be the ones that get you through this.

I'm a caregiver to a loved one (male, age 53- non-smoker, light drinker) that is 21 months out from treatment. He was dx Aug 2012 with SCC of BOT, HPV16+, 2 lymph nodes involved. No surgery. He had rads 5 days a week for 7 weeks and chemo was once a week for the 7 weeks. Treatment was hard, but very doable. Today, it seems to be a vivid memory and he is doing well. Physically he had a few obstacles, but mentally he is doing very well. In fact, today he is going for his 21 month check up where they scope, probe and prob him. At the end of November will be his 24 month mark and then he will have a chest xray, and blood work to check his thyroid. The teaching facility (U of M) doesn't do any more scans than necessary (they claim they can cause recurrences). He had one prior to tx and one after. The xray is to keep an eye on his lungs.

If you are not happy with your ENT and where you have been referred to for treatment, you should most definitely seek another opinion. We had a board of doctors that reviewed his case and decided on treatment. It was not up to any "one" doctor.

Shell, you will do just fine. Please come here often and someone can help answer your question. Cancer is not a death sentence anymore, technology has advanced tremendously and especially with this type of cancer. This cancer is treatable and cureable, please remember that.

As others have suggested, please review the "superthread" at the top of the discussion board.  It is loaded with valuable information that you will eventually find handy. I will say that if there is any suggestion about a feeding tube, to really consider getting it prior to treatment. Some have done well without it, but some have needed it. My loved one needed it about 3 weeks into treatment and we wished we would have gotten it ahead of time. His throat became too irritated to even consider food. Keep stocked up on Ensure or Boost to keep your calorie consumption up, you will definitely need this. Also, keep drinking water no matter how hard it is to swallow. This is imperative because if you don't swallow during this whole treatment, you could lose your swallowing ability, so DRINK, DRINK, DRINK! 

You will always have plenty of support here, so come as often as you like. We'll be here when you ring the bell that treatment is over!

God Bless,

~C

P.S (Stay off the internet...outdated material there and wording you will not understand and take out of context)

I was on that superthread

I was on that superthread nearly all night!  Very helpful.  When you referred to the U of M were you talking about Michigan?  I'm forced to receive my treatment 1,200 miles from family because of my insurance.  When treatment is done and my new plan starts Jan. 1 I'm going home to Michigan.

 

Water, water, water....I'll remember.  Thank you!

 

Shell

cureitall66

Shell_7801 said:

I was on that superthread

I was on that superthread nearly all night!  Very helpful.  When you referred to the U of M were you talking about Michigan?  I'm forced to receive my treatment 1,200 miles from family because of my insurance.  When treatment is done and my new plan starts Jan. 1 I'm going home to Michigan.

 

Water, water, water....I'll remember.  Thank you!

 

Shell

Yep....

Yes, Michigan. He had his treatment there in Ann Arbor. Is Michigan your home state? 

debbiejeanne

Shell_7801 said:

Bill,
B#s*tard ENT.
My

Bill,

B#s*tard ENT.

My husband broke down uncontrollably when that ENT said if it's in my lung or liver I'm pretty much dead.  I'm having a very tough time thinking of that too.  I don't think it made it to my lungs and if it did I'm gonna fight like hell.  If I cuss I hope I don't get thrown off the site.  I'm going to my GP tomorrow for some Xanax and I'm going to do like you said with the paper, very good idea thank you!

Shell

shell, we've heard cuss words

shell, we've heard cuss words before, hell, i'm sure most of us have used the worst.  we will still love and support you if you cuss, we promise.  i'm pretty sure that at least a few of us probably went thru the gammit of cuss words when we got our dx.  heck, i'm sure i even created a few new ones.  in time, you will settle down, accept that you've been dealt a bad hand and prepare yourself to fight.  then all your energy will go into the fight and that is what you will concentrate on.  try to go easy on your hubby.  i think its harder on our loved ones watching us go thru this than it is on us.  once you are over the initial shock and can talk, talk to him and let him know what kind of help you need from him.  write down everything you would like him to do, kinda like a check list.  you must remember this is a shock to him as well and he has no idea what he needs to do.  ask questions here for yourself and for him.  we will help you both travel this road.  there are many caregivers here who can give your hubby some great tips on how/what he can do to help you with appointments, doctors, medicines, notes, ect.  you will get thru this and we will help you.  so, go ahead and cuss, get it out so you can get it over, then put on your boxing gloves and get ready to kick some cancer ****!!

God bless you and your family,

dj

Debi16043

Shell_7801 said:

Matt, thank you!  I'm pretty

Matt, thank you!  I'm pretty sure he said mine is Stage 3a, not so sure about the "a" but that's what I remember.  I've not asked "why me".  I watched my mother die of skin cancer age 43, my best friend die of colon cancer age 38, my uncle die lung cancer age 55, my father die of every cancer, just full of it, age 72.  And I continued to smoke.  Most of my friends will continue to smoke even though I have revealed what it has done to me.  I cannot be surprised because I knew it would some day take a turn on me.

Shell

Shell i wouldn't worry about

Shell i wouldn't worry about the WHY because they don't know just guesses.  I've never smoked, dont drink and was tested for HOV and don't have it either.  It is what it is.  My husband smokes 2+ packs a day and drinks and never touches a veggie eats only meat cheese and fried junk.  I eat extremely healthy and was walking 3 miles a day when I got gum cancer that spread to jaw bone and I'm a stage 4a.  They pulled all my teeth, cut out jaw bone with tumor, took out my fibula in leg and made me new jawbone.  I had a skin graft top of leg.  Trach, feeding tube and 6 weeks radiation.  They also removed 72 lymp nodes (all negative) it was three years ago and I'm still cancer free.  But... The radiation killed my new jaw bone so now three years later I'm fixing to have same 16 hour surgery all over again with the fibula in my other leg...  No one but GOD knows if it's our time to go.... You just do your best and do your part and doctors will do theirs.  What we go thru as adults is bad but I'd do it again and again not to have to see those little kids endure this horrible thing.  You can do it.  Most likely you'll find out how very strong you are, how much your family and friends love you and bring you closer to God.

 

like everyone on here will tell you it's difficult but very doable.  God bless you and you too will return to normal just a brew normalnormal

CherieLW

Shell_7801 said:

Thank you Cherie,
Your dad is

Thank you Cherie,

Your dad is lucky to have such a loving supportive daughter.  The positive thing is slowly creeping into my mind.  So far I've enjoyed the humor of my friends.  Laughter is a great medicine.

Shell

Just keep up the humor and

Just keep up the humor and good times, you will be surprised.  I have watched my dad come out of this with not only a new sense of humor but a better outlook at life itself!  I'll continue praying for you... try to concentrate all that is good!  i know sometimes that's easier said than done.  

hwt

cureitall66 said:

Yep....

Yes, Michigan. He had his treatment there in Ann Arbor. Is Michigan your home state? 

Shell

You asked about my recurrances. My brother goes to Mayo and when he told his ONC about me, the ONC said "don't let anyone tell her she can't be radiated twice". I had IRMT 05/2012 in STL and SBRT 08/2013 and 04/2014 at Mayo. Recurrance found on routine CT follow-up that I was getting every 3-4 months. Again, don't borrow trouble but know there are options should the need arise.  

Skiffin16

Welcome...

First welcome....

Just concentrate on you, and your recovery and circumstances... You are young and have a lot going in your favor. Take one step at a ime and deal with what that presents you.

I'd have to smack the MD for even planting the other what if's or possibilities in your head before he's even verified any of that.

I too was STGIII Tonsil and lymphnode, same side... HPV+

Sixteen totally weeks, four types of chemo, seven of those weeks concurrent with rads, no neck dissesction though...

That was five years ago, and I'm clean and clear...

Hang tough, stay positive, and fight for your future..

Best,

John

polystone2014

shell, keep strong

So very sorry to hear this information. I will pray for you. Please keep strong and god will help you.