#1052 04-25-2003 10:37 AM | Joined: Apr 2003 Posts: 2 Member | OP Member Joined: Apr 2003 Posts: 2 | hi, folks i've been poked and scanned, and my dr's opinion is base-of-the-tongue cancer. due to have a biopsy in 2 weeks. my dad died of cancer 2 yrs ago, and my younger brother is battling colon cancer now. i'm so scared! there's an ugly white mass at the base of my tongue and i have to wait two weeks to even get a biopsy so i can know whether to worry or forget about it. it hurts to swallow because the muscles in my neck are "sore", but i have no lumps i (or my dr) can feel. somebody tell me something good about this horrible "waiting time."
Doris
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#1053 04-25-2003 11:51 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hi DJ, Unfortunately I can't tell you anything "good" about the waiting period, I can tell you from my experience that it is the worst time and perhaps the scariest time. Try not to think about the worst possibilities because it is too early in your journey to know much. If it is cancer, it sounds like you may have caught it fairly early and that is good.
If you read on this site you will find a lot of good thoughts, but I think if I were new here it might also add more fuel to the worry fire.
Take care and ask lots of questions.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#1054 04-25-2003 01:19 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | I think that waiting two more weeks for a confirming biopsy is bullshit. Make that BULLSHIT! This guy needs to get the biopsy done, or refer you to someone or someplace that can do it in short order. You need to be getting a definitive diagnosis, and get involved in a major multidisciplinary cancer center soon. Do not put your life in the hands of someone who thinks you should wait around another two weeks for a biopsy. You need to get a head and neck MRI to find out if anything in your neck is going to show up. This all sounds harsh, but it is your life on the line here if he thinks this is a base of tongue cancer. The sooner you find out, the better your chances are against it. The earlier the diagnosis and staging, the better chances of recovery. It is time to be your own advocate, demand what you need, and get to researching which is the best facility in your area, who are the best doctors, and deciding if you want to go out of your area to another cancer center where the experts in this field are practicing. Don't wait for this guy to tell you what's what. It isn't his life on the line. If he isn
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#1055 04-25-2003 01:42 PM | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2002 Posts: 642 | I completely concur with Brian. On the very day that my tumor was discovered, I had an MRI that night and biopsy the next day...and this was before I got to MD Anderson...just an ENT at another hospital.
Danny G.
Stage IV Base of Tongue SCC Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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#1056 04-25-2003 09:27 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Hi Doris, Chiming in with Danny and Brian, I had a biopsy on the first visit to the head and neck surgeon.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#1057 04-26-2003 09:42 AM | Joined: Apr 2003 Posts: 2 Member | OP Member Joined: Apr 2003 Posts: 2 | thanks all. i, too, thought the biopsy should have been earlier; the ent who's going to do it was booking 2 months down the road; it was only after my ent (who is not a surgeon) told him about my family history of cancer that he moved it to 2 weeks. i'm in Oklahoma City, and this guy is supposedly the "second best" in town (the "best" was booked for 3 months). the waiting is really hard, but it's almost half over now. as i read the posts on this site i become more and more depressed and frightened. i didn't even realize this kind of cancer could be terminal. i thought it was probably "no big thing." all of you here have my utmost respect and admiration for enduring all you have; i hope that if i do have cancer i am strong enough to endure it. i am a "wuss" when it comes to pain and nausea, and it sounds like i may have a lot of both. i am so scared and confused and tired all the time.....i'm even wondering if it is worth it. sorry for the attitude, but it's how i feel right now.
thanks for all your replies and encouragement.
Doris
Doris
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#1058 04-26-2003 05:57 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Doris, On this site you can read all kinds of things that are scary to think about. I went through my surgery and treatments fairly easily. It was the first surgery I have ever been through. Of course it is worth it! Do you have family near enough that can help you with this?
Do your best to wait for "your" case to unfold. Don't assume the worst. Every one of us gets a "custom" job so what ever you have to put up with may not be so bad.
Take care
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#1059 04-27-2003 12:26 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Doris, Not to frighten you but I should have mentioned also that I also had a very large and obvious tumor that was easily visible just opening the mouth. That's why they wasted no time on the biopsy.
Gary ------------------------ SCC, Stage III, Right Tonsil
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#1060 04-27-2003 03:24 PM | Joined: Apr 2002 Posts: 64 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2002 Posts: 64 | I agree with everything said here. When my mother went to see her internist and he saw something in her mouth he didn't like he took her down the hall to an ENT to have it looked at and biopsied immediately. Like Brian says you can't be held hostage by a doctor's schedule. It's your life.
Vince
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#1061 04-27-2003 04:21 PM | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2002 Posts: 642 | Doris, We are all wusses. I hope that your reports come out clean, but if they don't, I am sure that you will be strong enough to handle it. We have no choice, and it is not as bad as it sounds anyway. Since you are in Okla., if it turns out that you need treatment, you might want to consider M.D. Anderson. It is not that far from Okla. City and is definitely the best facility anywhere close to your home.
Danny G.
Stage IV Base of Tongue SCC Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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