CancerCompass message board discussion started by youngwm on 4/29/2008 http://www.cancercompass.com/message-board/message/all,23536,0.htm Sun, 12 Oct 2008 00:00:00 GMT Sun, 12 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am 45 and have been diagnosed w/ tonsil cancer, with 3 affected nodes on same side and 1 on opposite side.I am feeling very anxious about getting started because i was diagnosed on 4-17-08. it has been staged yesterday as a IV. I will be treated with chemo and radiation starting 5-12-08. Has anyone out there had this much time between diagnosis and treatment? Is there HOPE! truly anybodies, billy  youngwm Tue, 29 Apr 2008 00:00:00 GMT  On 4/29/2008 youngwm wrote:I am 45 and have been diagnosed w/ tonsil cancer, with 3 affected nodes on same side and 1 on opposite side.I am feeling very anxious about getting started because i was diagnosed on 4-17-08. it has been staged yesterday as a IV. I will be treated with chemo and radiation starting 5-12-08. Has anyone out there had this much time between diagnosis and treatment? Is there HOPE! truly anybodies, billy Billy, I understand your anxiety of waiting. My docs do not seem to concerned about our "Slow Boat".   My husband first noticed the node and went to the doc the next day on Feb. 22. After antibiotics, negative biopsy, CT Scans, two weeks to schedule tonsillectomy, then consults with oncologist, surgeon, and radiation oncologist we were to start chemo on  April 21st( 8 weeks!!). Then ---divine intervention---a second opinion--saw a new doc out of state. This doc is a head and neck specialist and is fine with us waiting another two weeks to start treatment(we will be moving to Fla. for treatment and needed to get time to get everything in order) I was not happy about my husband delaying another week but the docs aid it was OK.  So here we are 10 weeks out--scary, but they say it's OK. My husband is stage 3--second lymph node biopsy was positive.Hope this helps,DeniseB DeniseB Tue, 29 Apr 2008 00:00:00 GMT Billy,My pathology report was done on November 27, 2007. On December 4th MD Anderson had the game plan laid out w/ radiation beginning on January 3rd. I asked about waiting that long and they said it wouldn't make any difference. I know you are anxious as I was. But it's ok to wait a few weeks. You have a rough road ahead, but you'll get through it. Enjoy these 4 weeks and try not to think about it.Good luck and God bless.Rick rick51 Tue, 29 Apr 2008 00:00:00 GMT  On 4/29/2008 youngwm wrote:I am 45 and have been diagnosed w/ tonsil cancer, with 3 affected nodes on same side and 1 on opposite side.I am feeling very anxious about getting started because i was diagnosed on 4-17-08. it has been staged yesterday as a IV. I will be treated with chemo and radiation starting 5-12-08. Has anyone out there had this much time between diagnosis and treatment? Is there HOPE! truly anybodies, billy My treatment took about a month to start after finding base of tongue cancer.  We all know waiting is very hard, but as you can tell from the other posts that is about the typical timeframe. Once you start treatments you might not feel great but at least you will know that you are heading in the right direction .  While you wait read EVERY post, you will find out so much  and get great help from people going through the same thing.  This is a wonderful forum.Best of you, D. D1211 Tue, 29 Apr 2008 00:00:00 GMT seems there is a common thread of a wait between diagnosis and treatment.  my S.O. was diagnosed mid-October and didnt start treatment until the day after Thanksgiving...took that long to get a second opinion and deal with health coverage out of state.it was a frustrating wait...he too is stage IV...we seemed more concerned about the time lapse than the doctors.  ~meesh meesh Tue, 29 Apr 2008 00:00:00 GMT  On 4/29/2008 D1211 wrote: On 4/29/2008 youngwm wrote:I am 45 and have been diagnosed w/ tonsil cancer, with 3 affected nodes on same side and 1 on opposite side.I am feeling very anxious about getting started because i was diagnosed on 4-17-08. it has been staged yesterday as a IV. I will be treated with chemo and radiation starting 5-12-08. Has anyone out there had this much time between diagnosis and treatment? Is there HOPE! truly anybodies, billy DMy treatment took about a month to start after finding base of tongue cancer.  We all know waiting is very hard, but as you can tell from the other posts that is about the typical timeframe. Once you start treatments you might not feel great but at least you will know that you are heading in the right direction .  While you wait read EVERY post, you will find out so much  and get great help from people going through the same thing.  This is a wonderful forum.Best of you, D. Thanks D I'm a fighter and am going to need help it is much appreciated, Hope all is well w/ u I'm praying for you now.wm  youngwm Tue, 29 Apr 2008 00:00:00 GMT Thanks meesh, Hope all is well w/ S.O. iam praying for u all. wm. youngwm Tue, 29 Apr 2008 00:00:00 GMT Thanks Rick I'm strong and i will make it. I've heard the pain in the throat stories but will have a peg put in 5-6-08. I'll take you're advise and enjoy. i'm praying for you.wm  youngwm Tue, 29 Apr 2008 00:00:00 GMT Thanks DeniseB, Yes this all helps and to know you're not alone is a comfort and your reply is appreciated. Keep fight we'll win.thank and im praying for you husband nowwm youngwm Tue, 29 Apr 2008 00:00:00 GMT Billy,Hang in there and you too will be on my prayer list. What is the course of your treatment plan--chemo, radiation, surgery?? Just comparing notes!DeniseB DeniseB Tue, 29 Apr 2008 00:00:00 GMT DeniseB; My tumor in the tonsil is to large for surgery along with affected nodes. 5-12-08 Chemo (Cisplatin) early morn., radiation after. radiation 5 days a week M-F for est 8 wks with 2 more chmo treatments spaced out  through out. if after 1st 2 wks of radiaton Dr. not happy with results of tumor size we will go to radiation AM then another in the PM.If by then the tumors are gone. no surgery. If tumors present still and small surgery to all affected areas.Hopes this is right I only have 1 shot at it it seems to be concensus with 1st group of oncologists i've seen.Let me know your procedures.billy or wm i've been using both names youngwm Tue, 29 Apr 2008 00:00:00 GMT I had stage IV SCC w/unknown primary-mets to right neck. I actually had the largest lymph node (proverbial lump in neck) for at least 8 mos before getting it checked out & ultimate diagnosis. Then another 7 wks to treatments. Cisplatin, IMRT, then 4 mos later, modified dissection. Now, abot over 15 mos from diagnosis, I am in remission. I agree-time maybe isn't so critical. Altho, if I was to "do it again" I wouldn't wait so long to have a lump checked out! Best of luck, Gayle  gayleann Tue, 29 Apr 2008 00:00:00 GMT Gayle,It is great kyou are in remission I will include kyou in my prayers. Success stories are what I need right now. I feel up and down lately. I am strong but still need to here there is hope. This site has helped already.Thank you all,Billy  youngwm Tue, 29 Apr 2008 00:00:00 GMT Billy,I wish you the best of luck through this difficult journey.My husband was diagnosed on March 25th with stage IV SCC that all started with the enlarged lymph node.  He is doing erbitux treatments once a week which started on April 9th and he started the first of 42 radiation treatments (5 days a week) the next week on the 15th.  He will be going twice a day starting next Thursday the 8th. I can only echo the words of others about using this board for everything from learning about what you are going through, what to do for what side effects or to simply vent your frustrations.  I don't know what I would have done without this place or the caring people who have helped me through these first steps of a hopeful cure. Hang in there! :) Brandi g8orgal79 Tue, 29 Apr 2008 00:00:00 GMT Brandi,  Thanks for the reply. I can see this site will help me through this.I will have to get my wife involved just in case i'm not up to keeping up with it.I'm praying for you and your husband and tell him when he's done with treatments and felling better to give me a hand I'll accept all the help i can get and if ican help him now i will. Tell him to keep up the fight to win.Billy youngwm Tue, 29 Apr 2008 00:00:00 GMT Hi, Billy.I'm a little over 6 months out of treatment for tonsil cancer, stage 4a. To date, I'm clean and my docs are happy with my progress. I went only 4 weeks from diagnosis to treatment, but those 4 weeks seemed to last forever. After I started treatment I felt much better just because we were actually doing something. Take your waiting time and look through the posts here about side effects and what works for them. There is a TON of info here that you wont get from your docs. Do be sure and get your wife involved, she needs to know this stuff too.Like Rck (I think) said, its a tough road, but very doable. We're all here for you.Best wishes,Mike micromisterphone Tue, 29 Apr 2008 00:00:00 GMT Hello there!  My husband was in the doctor's office in January with a cough, and his doc noticed a lump in his throat.  Had a CT scan, and we went to an ENT in February.  Fine Needle Aspiration was inconclusive, but this ENT referred us to a Head and Neck Surgeon at the David C. Pratt Cancer Center in St. Louis.  WHAT center?!  No, not my husband.  No way.  We met the surgeon on March 11th.  Surgical biopsy and repeat FNA on March 12th.  Diagnosis on March 13th.  Tonsillectomy and neck dissection on March 14th.  Talk about a whirlwind.  But it was really a blessing, as we didn't have a whole lot of time to think about the 'what ifs'.Then he had to have all of his upper teeth pulled on April 4th.  In addition to replacing 3 metal filling with porcelin on the bottom.  We just started the first of 33 tomotherapy radiation treatments on April 21st, and his first of three Cisplatin (chemo) infusions was on April 23rd - 6 weeks to the date of his surgery.  To make a long story short (too late) I would say if you're within 4-6 weeks of diagnosis, you should be fine.  But if you're not satisfied with your plan, or uncomfortable, I can't stress how important it is to be confident in your team of doctors.  My close friend recently passed away after a long battle with breast cancer.  And I can't help but wonder if she would not still be with us today had she gotten a second opinion.  Maybe not.  But this is your LIFE, it's just not worth taking chances.  If you have questions, then ask them.  And if you're not satisfied with the responses, then consider looking for someone else to give you their medical opinion. It's going to be a long road.  Come here often for support.  Stay positive, as much as you can.  You will get through this and have a new found appreciation for your life! Babzilla Wed, 30 Apr 2008 00:00:00 GMT Mike,That is so great that you are doing well. You don't know how much you and Rick have helped me so far already. I'll continue to think and pray for you both.I have 3 neighbors way up here in upstate NY that live within a mile that are either in remission or fighting a reoccurance. Their help is inspiring, also. I'll have some teeth pulled tomorrow, fit for my mask on 5-5-08 then treatment 5-12-08. I thank both of you for your support.Billy youngwm Wed, 30 Apr 2008 00:00:00 GMT I was diagnosed last November 24 and didn't begin my first radiation treatment until the end of December. Drs. didn't seem too concerned so I guess the consensus is not to worry! If I had this to do over again (God, what a nightmare) I too would have had my lump checked out sooner, but at first I thought it was a bad tooth or some other kind of infection so my primary Dr. gave me antibiotics. Of course, they didn't work and the swallowing just got worse, so after fooling around for 4-5 months, I went back to her and she sent me to an ENT.    Becky  wordweasel Wed, 30 Apr 2008 00:00:00 GMT Becky, What was your diagnosis?So Glad your doing good.I had the flu in earlymarch and it kind of masked the real problem. Had an upper resp. infection with a soar throat. I've always had strep and tonsilitis growing up and into my twenties,so i thought the flu had my glands swollen. I don't think I've ever had the flu like that, so it threw me off of the real problem. It took a good month to get over the cough i had and then the soar throat hadn't disappeared so I realized it was time to go to my doc who I never see because I've never been sick in 15 yrs other than cold and occasional virus. Just bad timing to get the flu. I had the lump on my right side then, it was small but like you said I won't ever let that go again.Its so great to have all this help!!!!!Thank You All Again:Billy  youngwm Wed, 30 Apr 2008 00:00:00 GMT Hi, Billy:I was diagnosed with pharyngeal SCC (don't know what stage) back in November and like your Drs., they didn't want to operate because they would have had to remove my voice box along with it. So I had 33 rads. and 7 Erbitux treatments. Seems to have worked but I'm not crowing until I get a PET scan result, which won't be for probably a month. This web site has been a blessing and have read all of the posts, some more than once. Wish I had known about it before starting treatments, as I would have asked for a few medications to take that others have done and stuff I could have tried on my own. Anyway, best of luck to you.  Becky         wordweasel Thu, 01 May 2008 00:00:00 GMT Becky, Thanks for the response. Good luck on the PET scan. I'll be praying for you. Billy  youngwm Thu, 01 May 2008 00:00:00 GMT