Just starting out on this journey and a bit scared

Well, last Friday the ENT doc said I have the big C. WOW! Now what?

I am having a CT scan today. The doctor took a needle biopsy on Fri and the results came in, positive, today. They canceled my hospital OR visit for another biopsy tomorrow. That's good news. The doctor said now a board will meet to discuss my treatment. He said it is cancer of the pharynx, hypopharynx squamous cell carcinoma. Tells me a lot :).

I have no clue what's in front of me. Reading the posts here I have learned that everyone is different. Thanks for posting your treatments and advise. I'm sure I'll on this site a lot in the future.
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Comments

  • ToBeGolden
    ToBeGolden Member Posts: 695
    Still Enjoying Life.
    I have walked what might be considered a rough road: radiation, surgery to remove my vocal cords, more radiation and chemo. But here's the thing I must tell you. At the present time, I enjoy something every day. I an grateful that I made it this far.

    This wasn't the case in some parts of the treatment. The treatment will get you discouraged. But your family and healthcare team will pull you through. And there will be good days in your future. Rick.
  • phrannie51
    phrannie51 Member Posts: 4,716
    Hello George....
    Welcome to the club nobody wants to join....I'm sure you are still in a state of shell shocked...it takes a while to combine your name with the word cancer and have it make sense...

    It's good to hear that your trip to the OR has been curtailed, and that a team will be getting together to decide on a treatment plan for you. Where are you being treated, if you don't mind me asking? When I got the news I was all over the place on where to get treatment, but in the end, decided to stay here in Montana...I think I got amazing care here...same protocol as MD Anderson except I got amifostine to preserve saliva glands.

    Oh, by the way, I have cancer of the naso-pharnyx, Stage III...with two lymph nodes involved....T1N2M0. I've had 35 radiations (finished on June 15th), and 4 chemo's so far (3 of just Cisplatin), and the 4th with Cisplatin and a 5FU pump, with 2 to go.

    The one thing I can tell you...you are SO lucky to have found this site. I found it just like you, before I started treatment...and have been here every single day since. You have found an extrordinary group of people here...kind, generous, spirited, with a wealth of knowledge and practical information.

    p
  • Grandmax4
    Grandmax4 Member Posts: 723
    I'm curious also
    as to where you will be treated...my advice is, learn all you can about your cancer and feel safe with your Doctor and His team...I am 8 months out from surgery by de vinci robot to remove my epiglottis, I feel I'm one of the lucky head and neck cancer survivors, it was caught very early ...I was given the choice of surgery or chemo and radiation, I chose the surgery and haven't looked back. Good luck to you and please keep us posted..we all are here to help you, support you, and walk the path to wellness with you
  • katenorwood
    katenorwood Member Posts: 1,912
    Hello and welcome !
    Alot of wise advice above...and alot of long time survivors on board here. I think that hearing a board is discussing your condition, is a great indication you are in a good spot ! But please write down questions you have...and always have an extra set of ears at appointments with you ! Again welcome to the group....and yeah the one no one should ever have to join. Warmest regards, Katie
  • hwt
    hwt Member Posts: 2,328 Member
    Grandmax4 said:

    I'm curious also
    as to where you will be treated...my advice is, learn all you can about your cancer and feel safe with your Doctor and His team...I am 8 months out from surgery by de vinci robot to remove my epiglottis, I feel I'm one of the lucky head and neck cancer survivors, it was caught very early ...I was given the choice of surgery or chemo and radiation, I chose the surgery and haven't looked back. Good luck to you and please keep us posted..we all are here to help you, support you, and walk the path to wellness with you

    Sorry to hear
    there is another passenger on this journey. Once diagnosed things seem to happen quickly as far as tests and doctor appts. I will keep you in my prayers that surgery does the trick and chemo or radiation will not be necessary. If they are, you can count on us to help you through it. It's not pleasant and no point in trying to sugar coat it but know that not everyone gets every side effect. My best advice is to take things as they come and deal with them. Don't waste your energy worrying about what may or may not come in the way of treatment...wait on the facts. Wishing you the best.
  • tommyodavey
    tommyodavey Member Posts: 728 Member

    Hello and welcome !
    Alot of wise advice above...and alot of long time survivors on board here. I think that hearing a board is discussing your condition, is a great indication you are in a good spot ! But please write down questions you have...and always have an extra set of ears at appointments with you ! Again welcome to the group....and yeah the one no one should ever have to join. Warmest regards, Katie

    Welcome
    Good to have you here George. Lots of information to be had here so try to read a little each day. Your doctor will be the prime source of information along with your Oncologist. There is a lot to learn but I do advise you not to do too much Google searching as it tends to list the worst cases. No reason to get all worked up over someone else's case. That was the mistake I made and mine turned out okay in the end.

    We'll be here all the way through your treatment and beyond so post away.

    Welcome once more,

    Tommy
  • phrannie51
    phrannie51 Member Posts: 4,716

    Welcome
    Good to have you here George. Lots of information to be had here so try to read a little each day. Your doctor will be the prime source of information along with your Oncologist. There is a lot to learn but I do advise you not to do too much Google searching as it tends to list the worst cases. No reason to get all worked up over someone else's case. That was the mistake I made and mine turned out okay in the end.

    We'll be here all the way through your treatment and beyond so post away.

    Welcome once more,

    Tommy

    I totally agree with Tommy....
    Stay away from Google. I started there, scared the pants off myself...found this forum, where they said to stay away....and I followed their advice....Like Katie said....lots of long term survivors here, and stats are interested in anything but bleekness.

    p
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Just George...
    Or someone other name....

    Welcome George...you found an awesome place here, sorry you have to join the clib, but you are in great company.

    Best,
    John
  • Laralyn
    Laralyn Member Posts: 532
    Sorry you have to be on the bus...
    ...but you found a great place with fellow travelers who made the journey!

    I had squamous cell carcinoma of the tonsil and soft palate. My treatment ended June 1, so I'm still in recovery (and will be for a while). One thing to ask your doctor is whether the samples tested positive for HPV. That can change the treatment protocols, depending on where you go.

    I got a second opinion before proceeding with treatment, and I recommend that to everyone. There is no substitute for feeling confident that you're making the right choice. Where possible, remove all doubts.

    If you do any research, keep a couple things in mind. First, everyone is different. Second, statistics are usually outdated and treatment protocols change so rapidly that what was common just five years ago has been updated and is different now. Here's a good take on statistics from a famous biologist: http://cancerguide.org/median_not_msg.html.

    If you have any questions or you need to vent, don't hesitate to post. We've all been there!
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    Laralyn said:

    Sorry you have to be on the bus...
    ...but you found a great place with fellow travelers who made the journey!

    I had squamous cell carcinoma of the tonsil and soft palate. My treatment ended June 1, so I'm still in recovery (and will be for a while). One thing to ask your doctor is whether the samples tested positive for HPV. That can change the treatment protocols, depending on where you go.

    I got a second opinion before proceeding with treatment, and I recommend that to everyone. There is no substitute for feeling confident that you're making the right choice. Where possible, remove all doubts.

    If you do any research, keep a couple things in mind. First, everyone is different. Second, statistics are usually outdated and treatment protocols change so rapidly that what was common just five years ago has been updated and is different now. Here's a good take on statistics from a famous biologist: http://cancerguide.org/median_not_msg.html.

    If you have any questions or you need to vent, don't hesitate to post. We've all been there!

    Hi George...
    Welcom, but sorry of course you have to be here.

    Take a look at difffernt folks probile by clicking on their name and reading "about me" tab ....that will give you a lot of info.

    Also, check out the oralcancerfoundation.org (that's oral cancer foundation .org) ...it's a great site for info ...but I have to tell you this message board is one of the best ....so please do come back often here ....

    I too recieved my diagnosis on Friday (at 6pm) ...so now we have that and cancer in common .... :)

    Whispered a prayer for you George that all will be best news going forward with regards to treatment options and all that you will be facing (kind of an odd statement to say "best news" I know ..but you get what I mean).

    Best,

    Tim
  • hawk711
    hawk711 Member Posts: 566
    George, Welcome
    I don't post much anymore George, as I am 2.5 years out of treatment and am doing very well. But when I see a post from a newbie, I have to give you a little lift and tell you that everything will be alright. Just attack this crap head on and get through the treatment. It is tough but it works. There are many survivors on this site form 1 month to 20 years+. We all have been scared, just like you. I found out about my cancer, also squamous cell, on a Friday and was in treatment 2 weeks later. 36 Rads and 6 CHemo treatments came and went, then the slow recovery began and it did take a while. I had a peg tube for 13 months and was glad I had it. Ask your Dr about the peg and about getting enough nutrition during treatment. Don't be scared, be positive about kicking cancers butt and then go out and do it. You can do this and you'll be o.k. Keep a positive attitude and get help from a wife, friend, relative. YOu'll need the support as you go through the treatment.
    Good luck to you
    Steve
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    first steps
    Hi Just George,

    Pleased to meet you and I am sorry you are here. It is like some awful lottery you didn’t sign up for. Now, let’s move forward and get you to the other side as quickly and as safely as possible.

    Drop in with any questions you may have.

    Best,

    Matt
  • BarefootBob
    BarefootBob Member Posts: 72
    Welcome
    Just wanted to say hello and that I felt the same way two months ago when my journey began. This is the best place to be. I have found not only this to be a source for great information, but a place where people understand. I felt right at home from day one. Welcome and take it one step at a time.

    -Bob
  • Pasdaughter
    Pasdaughter Member Posts: 18
    My mom is just starting her
    My mom is just starting her journey as well. On Monday she begins radiation and chemotherapy. It is very difficult already for her. But I told her that she is a Cancer Fighting Warrior and I am like her trainer, (the kind that people hire to encourage exercise in the gym). So I am the Cancer Fighting Warrior Trainer! All I can say is this place is the best resource I have found! The words of encouragement I find here strengthen the warrior in me. Now if I can talk my mom into getting on here... that would strengthen the warrior in her.
  • Just George
    Just George Member Posts: 8

    My mom is just starting her
    My mom is just starting her journey as well. On Monday she begins radiation and chemotherapy. It is very difficult already for her. But I told her that she is a Cancer Fighting Warrior and I am like her trainer, (the kind that people hire to encourage exercise in the gym). So I am the Cancer Fighting Warrior Trainer! All I can say is this place is the best resource I have found! The words of encouragement I find here strengthen the warrior in me. Now if I can talk my mom into getting on here... that would strengthen the warrior in her.

    Thanks to everyone who has
    Thanks to everyone who has responded so far. I've real all the posts at least twice! I had my CT scan this past Wednesday and am now waiting for the doctor to let me know what my treatment will be.

    Thanks again for your replys and I'll be checking in soon.
  • Vikeman10
    Vikeman10 Member Posts: 62

    Thanks to everyone who has
    Thanks to everyone who has responded so far. I've real all the posts at least twice! I had my CT scan this past Wednesday and am now waiting for the doctor to let me know what my treatment will be.

    Thanks again for your replys and I'll be checking in soon.

    George,
    Good luck with

    George,

    Good luck with treatment, I just finished mine and will wait 3 months for CT and PET scan results. My cancer was like yours but was located on the posterior hypopharyngeal wall. You can check out my space to see the treatment I had.

    Randy
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    Vikeman10 said:

    George,
    Good luck with

    George,

    Good luck with treatment, I just finished mine and will wait 3 months for CT and PET scan results. My cancer was like yours but was located on the posterior hypopharyngeal wall. You can check out my space to see the treatment I had.

    Randy

    CT only?
    Most of us also have Pet Scans with diagnosis, and I wondered if you've gotten one of those, yet? PS/CT are the best tool C Drs have in finding where the C is located, which includes the possibility of a more distant site that should also be treated. That has long been the standard with diagnosis, George, so you might wanna ask your Drs about it, if you haven't gotten a PS/CT.

    Survival rates are high for most H&N Cs, and hope your's is in the highs, George. Let us know what the Drs tell you. Keep it in the Positive- you will survive this thing.

    Believe

    kcass
  • Greend
    Greend Member Posts: 678
    Long term
    Treated in 1996 and still here to talk about it (just can't talk too loudly)........hang in there.

    Denny
  • Isign4Him
    Isign4Him Member Posts: 36
    with ya
    I am right there with ya George...just diagnosed with scc stage4 ...No worries Ill be right here with you and we can make the journey together......I recently joined CSN and it appears there are alot of good people here and plenty of support, me included ! I will add you to my prayer list
  • Sam999
    Sam999 Member Posts: 319 Member
    Isign4Him said:

    with ya
    I am right there with ya George...just diagnosed with scc stage4 ...No worries Ill be right here with you and we can make the journey together......I recently joined CSN and it appears there are alot of good people here and plenty of support, me included ! I will add you to my prayer list

    welcome to the group George.

    welcome to the group George. As others said, we are sorry you have to join, but if you had to join, this is one of the best bunch of people. I am 3 plus weeks out of treatment and slowly healing.

    We will help you with any questions you have. It is a scary journey but you will get thru it before you know.

    We will help you with anything we have learned. There are many wise long term survivors on this forum that help so much.

    Sam