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#26686 09-05-2004 07:55 AM
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Hello all. I need some advice and also I need to let out some of my feelings.

I had previously posting indicating some symptoms I have been having.

It all began around mid june when I developed a sore throat and some congestion in my ears and nose. With this came a slightly swollen gland on the left side of my neck. I went to my GP at that time and she felt around and because of the congestion she felt it was some sort of virus/ bacteria that my body was fighting off. She tested me for strep and it came back negative. She said to use affrin (sp?) for a couple of days. This seemed to clear up a bit of the congestions, but the sore throat was still there, though not as bad. She said that the anxiety I was feeling was because my wife is pregnant. Around the beginning of July i began to get really worried because the gland hadn't subsidded, but it also wasn't getting any bigger. I went back to her and she had two other Dr.s from the medical center come in and check to see if they were concerned about anything. They were not. So off I went, with the information of let's keep and eye on how you are feeling and check back with us in a little bit if any changes. After another week or so, when I still wasn't feeling normal, I asked for a referal to an ENT. Eventually After hassling with the appointment desk they were able to squeeze me in the following week.
Well around that time I came across this web site and found out a ton of new information. This heightened my concern about the lump on my left side. At this time i felt around a bit, and noticed a hard lump on my right side of my neck. Also I looked in my mouth a little closer and noticed that my right tonsil had a small bump on it that was light in color. This freaked me out.
I went to that ENT and he felt around a bit, and looked around and said , everything seems ok, and that we wasn't concerned with the swollen gland or lump and to come back in 4 months. (November) . So off I went. When I still wasn't feeling well, I called my GP and she said for me to go an Oral surgeon to have the throat Looked at and another ORAL cancer screening done. I did that and He didn't see anything out of the ordinary. But that he couldn't comment on the lump and that I should see an ENT.
When at the begining of the month of August I still wasn't feeling well, I got another referal to an Different ENT. This time I went to the HEAD and Neck Surgery Departmemt and one of the ENT's in that group of a Regional Hospital. They have a cancer center there and I thought this would help. Well this Dr. looked around and also felt around. He put a tube up my nose and then down the back of my throat to have a look. This time my wife came with me. He diagnosed me with Acid Reflux and alergies. He believed this post nasal drip in combo with the acid reflux was what was causing the pain in my throat. He didn't see anything abnormal, but to be certain, he ordered a CT for the lumps and then refered me to the department head to follow up with the results. I went for the CT and then the follow up. The DR. ( The head of the department) looked at the CT and didn't see anything abnormal. He felt around the lump on my left and said it was lipoma, and that the lump on the right side was a lymph node but felt normal in size and that he wasn't concerned and to Come back in

Earlier today i was out in the yard working and the pain in my throat was on my mind. I began to think about everything that has happenend in the last 3 months and I began to cry. I can't help but think that these things I am feeling (lumps, something in my throat) are something serios.

Well, here it is September and almost a full 3 months since I began to not feel well. I have been to seven Dr.s and none of them have been concerned with what they have found. Yet I have physical symptoms. When they find out that my wife is pregnant they seem to think that this is all in my head and that I am some sort of hypocondriak. However, this type of behavior is not ordinary for me. And if it all is my head, what don't they given me something for being a nut job!!

What can I do next? Boston is not too far for me, is it appropriate to call DF and ask for an appointment? Do I just wait this out? My issue with that is everything I read is early diagnosis is very important.

I don't know what to do. Any advice?

#26687 09-05-2004 12:20 PM
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I have met other people who think they have cancer (when they don't) Please get some help. We really need to spend our time with people who really have it.


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)
#26688 09-05-2004 12:36 PM
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Ok, after 7 docs and a CT scan you now know what it isn't. And the thing is it most likely isn't cancer. Doesn't help the fact you don't feel well though. You need to step back, get off the "I have cancer" mindset and try and find out what's really going on. One thing I've found out is you can get tunnel vision and start focusing on one thing and miss something else completly obvious. This could be a hard to shake or identify infection, allergy, who knows what, but sounds like they definately ruled out cancer.

Hope the docs can get your problem sorted out.

Bob


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
#26689 09-05-2004 12:55 PM
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Meier, there are hundreds of people registered on this forum who would trade places with you in a New York minute! So start doing a Happy Dance that you don't have to go through what so many of us have. Concentrate on that new baby, who is going to need your love and attention. Whatever you have, it most likely is NOT cancer, so you have every right to be celebrating the good things in your life. Hug your wife, take a deep breath, and relax.

#26690 09-05-2004 01:47 PM
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Hi, Meier, I don't know very much about medicine and diseases, but I DO understand being anxious and reactionary these days! While my husband was getting through his first round of chemo, he had a very bad night with pain in his left arm/radiating down through the chest. I, of course, was near panic and insisted we get to the hospital at midnight. Must have been a pulled muscle, but boy, I was sure it was a heart attack. I do agree with Joanna - - concentrate on your wife, your baby and LIFE! You have a great ride in front of you smile
(I do hear that that acid reflux problem can be a nasty pain - hope you get relief soon)


Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
#26691 09-05-2004 04:18 PM
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Meierece,
It's a horrible feeling to think you have cancer. I remember the few days in between my biopsy and the day I was told it WAS cancer. I agree with Joanna, take a deep breath and feel blessed that after seeing 7 doctors that you are still being told it is NOT cancer. While there are people on here that have suffered doctors misdiagnosing them, most of us see doctors that are competent. I cannot imagine that 7 doctors could all be wrong, the odds of that just seem so slim.
It is very, very easy to make yourself believe that you are feeling something in your body. I remember when I was a young mother and I had myself convinced that I had multiple sclerosis. A young woman in the small town I lived in was diagnosed with this and for whatever reason my mind took off with it. I swore up and down that my toes and fingers were numb and tingly, that I was off balance all the time and that I was SO tired. I didn't have multiple sclerosis, I was depressed. I was 24, had four children 5 and under and thank God a female doctor I went to see picked up on it. Two months worth of a medication and I was fine. The stress of my life at the time was the culprit, not cancer.
I sympathize with what you are feeling and will listen anytime you need an ear.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#26692 09-06-2004 08:13 AM
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I do agree with everyone who has commented about you seeing 7 Doctors and all coming up with the same diagnoses.........sounds like you do not have much to worry about in the Cancer department.
However, that being said it is not uncommon for a group of Doctors to be wrong as well. I am living proof of that. I was told by the Head and Neck team as well as my own GP that I was imagining the lump on the side of my neck.......it took me 6 months to convince them that I was not being over imaginative. Mind you it was not 7 Doctors but 4 was enough.
David

#26693 09-07-2004 12:33 AM
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Allergies and acid reflux can be frustrating and uncomfortable, continue seeking medical care for those.

Consider asking your doctor about medicine for anxiety. I started taking an antidepressant and it has helped me cope with life.

Pick up a book about babies and child development and start to get excited about your new child.

We always have fear and what ifs. Cancer is scarey, but you have been thorough in seeking treatment/medical opinions. Continue routine exams, but I'd say with 7 opinions you are probably safe from cancer.

Wear your seatbelt. Driving in a car is probably a bigger danger.
Good Luck


History of leukoplakia <2001-2004. SCC lateral tongue 9/03; left radical neck dissection & hemiglosectomy 10/03, T2-3,N0M0; 28 IMRT radiation completed 12/03. 30 HBO dives Oct-Nov 04 for infections and bone necrosis -mandible.
#26694 09-07-2004 03:02 AM
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Andy,

I don't particularly agree with some of the replies you have received here. It is true that all 7 doctors probably aren't wrong, but it can happen. DavidD's reply has merit. Also, if you check Uptown's posts, you will see that he had several doctors misdiagnose him. I think the thing that some of the people here have not considered is that even though you have seen 7 docs, not all of them were experts. The opinions of most GP's can usually be discounted when it comes to diagnosing oral cancer. They just don't see enough of it to recognize it. Even ENT's can miss it, esp. if you don't fit the profile and the tumor is deep under the mucosa. Base of tongue SCC is notoriously hard to detect in the early stages. That is why the survival rate on it is one of the worst for oral cancers.

I am not telling you to panic. I agree with the other posts in that you must try to get a grip on yourself and calm down. BUT I also feel that you need to be comfortable with the docs explanations for your pain, lumps, etc.

If you need one more opinion in order to have peace of mind, then I say go for it. Just be sure to go to "the experts" this time. Doctors at Dana Farber or, better yet, Memorial Sloan-Kettering should be able to set your mind at ease.

One thing that bothers me is that none of the docs have even done a fine needle biopsy on any of the lumps. That is a fairly simple procedure and while not foolproof, it could go a long way toward easing your mind. As far as the CT scan results, I don't feel they mean diddly. Heather's 3 cm tumor and 4 positive lymph nodes didn't show on a scan. An MRI or PET/CT would be a better indicator. Heather's surgeon now uses PET/CT's on a regular basis. Since losing her, he has changed some of his thinking on "the norm" for diagnostic procedures and treatment.

The bottom line is that this is probably not cancer, but it is your life and you must do whatever it takes to have peace of mind. Only then can you move on and concentrate on enjoying your life with your wife and baby-to-be.

Rainbows & hugs, wink
Rosie

P.S. I didn't want to get a feud going on the forum, so I have sent you a private e-mail with more info. Please let me know if you don't receive it.


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
#26695 09-07-2004 04:15 AM
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Thank you to those of you who have posted I appreciate it. I certainly don't mean to waste anyones time with my concern over my health. I wish the best for all of you.

Rosie,
I had asked about a needle biopsy, and I was told that the lump I has was not big enough for one. My question is how big does a lump have to be for a needle biopsy? If I had to say the largest lump I am talking about is approx 1 inch.

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