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Very Confused

anthony3470
Posts: 1
Joined: Jan 2010

I been dealing with some symptoms for awhile know.

So here is the exact story

1/20/05 – Had a open sore on left lateral side of tongue removed and biopsied and came back negative

4/15/05 – Growth on the posterior left side tongue removed and biopsied and came back negative

**somewhere between 4/15/05 and 5/5/05 shortly after the 2nd biopsy, is when I started to have a feeling of something in the back left side of my throat, which is accompanied by a dull pain that seems to come and go. This lump feeling seems to be just to the left of the Uvula.

5/5/05 – Ct Scan, all normal

6/10/05 – Went to Sloan Kettering
Only notable is “Examination of the oropharynx reveals tonsillitis more prominent in the left tonsil, this was cleared.

6/28/05 – Barium Swallow test for acid reflux, (compared to ct scan on 5/5/05)
Only notable is “Possible slight enlargement of the palatine tonsils”

1/19/06 – CT Scan (compared to the ct scan on 5/5/05)
Only notable “Prominent Palatine Tonsils”

2/3/06 – Back to Sloan Kettering
Only notable “Examination of the oropharynx shows some prominence of lymphoid tissue none of which is concerning for malignant involvement” ENT at Sloan advised that he does not see any need for other tests at this point and advised that there was no indication what so ever of a malignancy. Doctor advised not to return unless other symptoms occur and to forget about it.

2/2009 - Between the last visit in 2006 until 2009 I Still was having feeling of lump sensation. It did seem as the pain in my throat was not as prominent through these years, but returned in 2009 more prominently. I called back to Sloan Kettering and explained to the doctor of my symptoms and my concern for cancer. The doctor explained that if it was cancer and it had started when my symptoms began in 2005 that I would for sure either have other major symptoms by know or I would not be here all together. He advised me that if I wanted to come back to be evaluated that I am welcome to, but he did not believe it was anything of urgency. He advised to follow up with the local ENT and if he seen something relevant that I should return.

2/22/09 – Followed up with a local ENT, which scoped me and said he did not see anything abnormal. He did say he see’s the lymphoid tissue as the doctor at Sloan did. He stated that there were no obvious signs of malignancy or obvious indication for biopsy. He state he could possibly take random samples from the back of my tongue for biopsy and to return for a follow up. Which I have not since I have new insurance and this visit cost me much more than my old insurance.

3/1/09 - Went to Primary for complete evaluation and all blood work and test came back normal. After recommendation from primary doctor that symptoms may be somewhat psychological, I followed up with a psychotherapist who prescribed medications. The pain in my throat seemed to go away after this, but the feeling of a lump still continued to date.

In 2005 and 2006 I did seek 2nd and 3rd opinions from 2 other local Ent's that also stated there was no obvious indication of any malignancy or any area that was suspicious for biopsy.

12/26/09 - Still having sensation of lump in back of my throat and developed a slight pain in the right side of my throat that seems to radiate towards my right ear off and on. This started after a night when I was at a party that went into the early morning hours and occurred in the afternoon when i woke up. It does not seem to be in my throat, but rather just to the above right of the Adams apple. I can not see or feel any lumps in this area. The radiating pain to the ear is not there as much as the slight pain to the right of my throat. The pain is not there all of the time, but rather seems to come and go throughout the day as I swallow or move my head a certain way. It seems more prominent in the morning as well. If I push my head down to my chest i can feel it, feels like it is just under the right side of my jaw. Sometimes i do not feel it at all, but if I really move my head around I can feel it. I did also notice the pain in my throat that was there previously returned for a bit but then went away again.

I had a ct scan scheduled prior to these new symptoms and had postponed the scan until after the holidays because my primary had advised me against the scan because of the exposure to radiation, as she felt it was not necessary and I may be doing more harm than good.

So at this point, I am so very confused and not to sure were to go with all this. I am not crazy and I am having these new symptoms that are very concerning to me.

I am trying to stck to the facts.

I called The doctor back at Sloan Kettering in NY and he told me that either i would not be here right know or would have had some very major symptoms. He said he did not see an urgency for me to go back to see him.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Seems like your Drs did their due diligence. If they've biopsied everything there's not a whole not more they can do. If the biopsies were not sampling errors (it does happen) then you do not have cancer. Many symptoms of cancer do not come with pain,, but instead with a heaviness or tightening due to tumor growth.

What you might do is advocate for more biopsies insisting that you need to know with greatest confidence.

Warmly,

Mick

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

Maybe you should travel to another Cancer Center that might see something different that the doctors at Sloan

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Anthony,

I had a similar situation about 6 years ago but it presented more as tightness in the throat and neck near the Adams Apple and it would come and go. I saw an ENT who did a local scope and found nothing suspicious. He couldn't give a definitive answer as to the cause.

From what you have written it seems your doctors have really covered all bases. One option for a scan rather than exposure to the toxins of another CT/PET you may want to consider getting an MRI as it's much less invasive. Ask your Dr's. A CT / PET Scan will be a more accurate option but as said, you do put nasty stuff into your body.

We are not Doctors here but you may have muscles spasms or a benign lump that didn't light up you last Scan. Seems they have ruled out Cancer so far as your Dr said, you either would have already been diagnosed or 'not here' by now, so less worry should be something to focus on.

Hope you find the cause.

Scambuster

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