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EzJim #103914 09-21-2009 01:15 PM
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Thank You Brian and all for your time and comments. You have all been very helpful and very very nice in listening to my issue. I have been obviously very concerned over my issue and you have all shed a good light on were I should go from here. I

I have actually called back to Sloan Kettering on this past Friday and spoke to my doctors counter part and he advised me that if it was cancer, I would have most definitely had other symptoms arise by know. He advised me that he believed I had nothing to worry about and to follow up with my local ENT just for piece of mind if not anything else. But, it was nothing that I had to do urgently.

The only thing that concerns me is that I waited so long to follow up with another ENT. The last date I saw my doctor at Sloan was in February of 2006. I had them fax me the doctors notes from this last visit and one sentence kind of scared me. It reads "Examination of the oropharynx shows some prominence of Lymphoid tissue none of which is concerning for malignant involvement".

What scares me is that if this is my problem, that this tissue is cancerous and has grown all these years I am not in a good position know. Does anyone have any insight into what that sentence actually means? Is it something I should be concerned about?

Also, not having any other symptoms in some years, does that justify not going back to another doctor? Everything else in the report was normal.

anthony #103920 09-21-2009 02:51 PM
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What they mean is that typically Squamous Cell Carcinoma of the oral cavity is a very aggressive cancer and if untreated will result in the patient's death within a very short time. Certainly within a 2 year time frame so if you were cancerous 4 years ago you most likely wouldn't be posting from this earth.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #103960 09-22-2009 09:08 AM
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I went to an ENT today and he scoped me. This was the same ENT I went to back in 2005. He explained that he does see some enlarged Lymphoid tissue, as the doctor at Sloan did in 2006 and it was symmetrical and he was not concerned about it, as this is normal.

He explained because I am constantly clearing my throat that this may irritate this area and cause the discomfort I am feeling. He gave me nose spray and made a follow up appointment in 4 weeks to see if there is any change.

Were I am confused is when I asked if there was anything to biopsy. He explained that he did not see anything to biopsy. But, if it was not better in four weeks he could take some random samples from the back of my tongue to biopsy. But, he did not see anything specific that he could biopsy at this time.

Why would he want to take random samples to biopsy if there was no indication. Or is he just doing this to cover himself liability wise?

There was an intern there that also looked down my throat and when the doctor left the room she explained that she was 100% sure that there was nothing that appeared to be cancerous. She explained that after all this time I would have had other symptoms.

I just cant come to terms with all this. I don't know if I should have random samples taken from the back of my tongue, mainly because I was probably very insistent on some type of biopsy to this doctor.

anthony #103978 09-22-2009 02:27 PM
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Anthony,

The ENT is probably just saying that in 4 weeks everything should resolve itself with the nasal spray and if not then he might want to take a biopsy or 2 just to be safe. Just follow his instructions and stop thinking about it and go back to him in 4 weeks.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #103987 09-22-2009 05:03 PM
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Yes, I agree you are absolutely correct.
I am just very worried and very confused.

I think I should just drop all of this at this point.

The fact that it has been over four years and no other symptoms or change in symptoms should be enough confirmation for me.

I just cant accept it because I come up with all these excuses in my mind. For example I think well all those doctors and tests I had done was 3 to 4 years ago and maybe it was to small to detect back then and it has been growing all these years. I am constantly surfing the internet and reading stories of people that were diagnosed after years of going to doctors and think well that could be my case also. I think well I smoked all these years and how could this be anything else. If there is any shred of anything that I can justify it being cancer I cling to that and feed of of it, even though all the doctors are saying something different. I did not tell the doctors of my smoking so I think well they don't take that into consideration so they think because I have no history of smoking that it must be nothing. The list goes on and on.

I am being very obsessive with all of this. To the point it is controlling my life.

Every doctor I speak to tells me this same thing. I just cant accept there opinion. The way the doctor at Sloan very politely explained it was that I would have definitely have had other symptoms or not be hear at all at this point if cancer was the case.

Yes I feel something in my throat and yes it has slight pain off and on.

But, I feel at this point I am going to drop this entirely and just try to forget about it and see what happens.

I apologize to everyone in this forum for my obsessiveness and me just wanting to here its nothing. I need to come to grips with this. I think to do that I need to put this aside for awhile and see what happens.

The fact of the matter is it has been over 4 years and I am still obsessing over this issue. Despite what the doctors tell me.

anthony #103991 09-22-2009 05:19 PM
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Anthony,

The people here would love to hear what you are hearing from your doctors. We can sympathize with the fear you are experiencing but after 4 years and several doctors saying you look fine you need to accept and move on. If you can't do that maybe you should be seeing a therapist. I don't mean to sound rude, but the people here have cancer. We have had parts or all of our tongues removed, jaw, cheeks...you name it. A lot have suffered through chemo and radiation. Again, while we want to help and support people it's hard to listen to someone who can't accept good news. You have been to one of the best hospitals in the world for head and neck cancer. What else could you possibly do?

Again....my intention is not to be rude. I just think you need something we cannot provide for you.

Last edited by suzanne98; 09-22-2009 07:35 PM.

Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
suzanne98 #104038 09-23-2009 07:23 AM
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Anthony,

You can find ANYTHING you want on the internet so don't get me started.

Bottom line...even if you had one SCC cancer cell 4 years ago and it went untreated you would be dead today, absent some miracle, so stop thinking about it and do what the doc recommended and go to see him in 4 weeks.



David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #104049 09-23-2009 11:58 AM
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anthony Offline OP
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Thank you all for the replies. You all have been extremely nice to listen and put up with my obsessiveness over this.

I will take your advice David and stay off the internet. You are 100% correct. I did get caught up in trying to diagnose myself and I went into a panic over everything I been reading on the internet.

I have learned alot from this experience to say the least.

I appreciate you being candid David with the bottom line.
I again apologize for my obsessive reaction to my symptoms.


anthony #104050 09-23-2009 02:20 PM
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No apology ever needed here. We all (at least I did) came here starry eyed and full of fears and even some wild theories, some justified and some not, but you pretty much get the full and complete skinny on this site.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #104069 09-23-2009 05:54 PM
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anthony Offline OP
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I though about this and have decided not to pursue this any further at this point.

Simply based on the fact that over four years have past since my symptoms have started and I am still here.

I am not gong to follow up with any other doctors.
I believe this may feed my obsession and even instigate my anxiety further.

Yes I have these symptoms but like Brian said, I need to think outside the box at this point.

I am torturing myself with all of this.

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