Squamous Cell Carcinoma -Survivor

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RE: Squomous Cell Carcenoma

by missfather on Thu Jul 23, 2015 03:05 PM

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Thank you John. ...I'm going to trust my gut instincts a bit better now. Thx Steve

RE: Squomous Cell Carcenoma

by missfather on Thu Jul 23, 2015 03:09 PM

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Thank you Susan ...Easy to get confused at times...thx again I'll have more trust in my intuition  & common sense

RE: Squomous Cell Carcenoma

by Dlynn1210 on Thu Jul 23, 2015 04:55 PM

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I cut down on my sweet intake realizing there is never 100 percent proof of many things but I definitely don't make it the center of my intake. Several foods release important glucose but I avoid syrups using crushed berries instead but I use small amount of syrup in recipes. Excess sugar is bad for us anyway. CTCA has nutritionist that work with patients and they guided me throughout treatment and still there if I have any questions. Completed treatment Oct 2007 and still cancer free. Diana

RE: Squomous Cell Carcenoma

by missfather on Thu Jul 23, 2015 06:08 PM

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Thank you Diana

RE: Squomous Cell Carcenoma

by Panlinea on Sat Nov 14, 2015 12:01 AM

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Hello all i was diagnosed last year April 2014 with HPV Squamous cell carcinoma in my left tonsil. wasnt sure how to start my own thread so have tagged it on to the end of this one. My treatmment consisted of neck disection 6 teeth pulled tumor removed by laser followed by 30 Radiothraphy sessions. And about a year ago was told that i was clear. Two weeks ago i started experiencing symptons such as sore throat, ear ache, pain in my Jaw shrp pains shooting up into my head causing headaches tender gland etc. I telephoned my ENT department and managed to get seen last week 6th Nov and was informed that there was nothing obvious. Today i have had an ultrasound scan and i have been informed that i have a number of abnormal lymph nodes in my neck. I was told by the doctor doing the scan that it could be because i had had lymph nodes removed from other side of my neck and had had radiotheraphy, he also took a sample with the fine needle etc.

Now my question is to those of you who have experienced recurrances and what symptons you experienced. I should find results out next week but i have that feeling there is something not right. or are these symptoms im experiencing common side effects that are nothing to worry about. Any info greatly appreciated.

RE: Squomous Cell Carcenoma

by atcbugsy on Sat Nov 14, 2015 12:09 AM

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Panlinea,

Sorry you are visiting these boards once again.  My last radiation treatment was about 13 months ago for SCC HPV 16 at the base of my tongue.

Prior to diagnosing my cancer, the ENT performed a fine needle aspiration (FNA) which came back negative.  So, I caution you when relying on these results.  If memory serves correct, another member of these board's FNA came back inconclusive, but yet, upon further testing came back positive for cancer.

So, please be careful if relying solely on the results of the FNA.  It was only after removal of what they thought was a branchial cleft cyst that they realized I had cancer.

Best of luck.

Bugsy

RE: Squomous Cell Carcenoma

by SameJourney on Sat Nov 14, 2015 02:22 AM

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An ENT, who felt by husband's swollen tonsil and lymph node were 85% cancerous, recommended a FNA for my husband. We were told there was a 50-50 chance the findings would be inconclusive....and that was exactly the results we received. Based upon a friend's recommendation, we sought a second opinion with an oral maxifacial surgeon who immediately diagnosed tonsilar cancer and recommended tonsillectomy/rad. neck surgery. If we had to do it all over, we would have skipped the FNA (and saved $400). However, at that time, we didn't know how to proceed and followed the ENT's recommendation of FNA. Busy, I appreciate your comments on these posts.

RE: Squomous Cell Carcenoma

by Dlynn1210 on Sat Nov 14, 2015 01:14 PM

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The only symptom I had was extreme fatique - so much so that I knew something was wrong and started visiting doctors to find the reason.  Anyone who knows me can tell you I avoided doctors at all costs.  After seeing five different doctors who could find nothing wrong, I began to think it was my imagination.  I then began to have reallyyyyyy mild chest pains which directed me to a cardiologist.  She looked in my mouth and instead of asking me if anyone had told me I had one greatly enlarged tonsil as one doctor had the week before, she said "We need to get you to an ENT and they may want to biopsy that."  She made an appointment before I left her office with an ENT - two days later I was in the ENTs office and told after examing I most likely had cancer. One tonsil was barely visible while the other took up half my throat.  I was told that when one was hugely swollen while the other was normal almost always indicated cancer.  Five days later I had a tonsillectomy and was diagnoed with cancer before leaving the operating room. 

A needle biopsy was never mentioned.  Tonsil cancer used to be a very rare cancer but it is on the rise.  Two people who lived within a block of my home were also diagnosed with it. 

At a time we feel like a deer in headlights, we have to quickly educate ourselves.  This is where Cancer Compass comes into our lives.  We learn from others who have been down this path already.  It has now been 8 1/2 years since being diagnosed (July, 2007) and 8 years since I completed treatment.  I thank God every day for my outcome but especially every year to hear that I am still cancer free.  I had a tremendous cardiologist who "knew" what she was looking at (one hugely enlarged tonsil), a wonderful ENT who wasted no time in diagnosing, one of the smartest, most compassionate oncologists anyone could ever hope for, and God who saw me through.   

Diana

RE: Squomous Cell Carcenoma

by jalind on Sat Nov 14, 2015 03:45 PM

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On Nov 14, 2015 2:22 AM SameJourney wrote:

An ENT, who felt by husband's swollen tonsil and lymph node were 85% cancerous, recommended a FNA for my husband. We were told there was a 50-50 chance the findings would be inconclusive....and that was exactly the results we received. Based upon a friend's recommendation, we sought a second opinion with an oral maxifacial surgeon who immediately diagnosed tonsilar cancer and recommended tonsillectomy/rad. neck surgery. If we had to do it all over, we would have skipped the FNA (and saved $400). However, at that time, we didn't know how to proceed and followed the ENT's recommendation of FNA. Busy, I appreciate your comments on these posts.

Note that some form of biopsy is typically necessary for medical insurance purposes before the insurance company will allow proceding with any treatment. "Just looking at it" doesn't usually count as sufficient proof that it's cancer. A good, experienced doctor may know that it's extremely likely with appearance combined with other presenting symptoms, enought to be willing to wager big bucks on it, but the insurance companies want biopsy pathology reports.

I've had docs take photos of stuff just to justify their decisions to the insurance companies that will second-guess and question all diagnoses that could cost them significant money in claims. My ENT did the first FNA in his office and when that came back inconclusive he had me immediately go down to the lab the next day where the pathologist, who had expertise with performing an FNA, could do it there and look at preliminary results to ensure she could make a conclusive pathology report before we left. We were doing this based on a CAT scan that had come back with a rather ugly radiology report, but that could only justify doing the FNA (albeit twice).

RE: Squomous Cell Carcenoma

by jalind on Sat Nov 14, 2015 04:37 PM

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On Nov 14, 2015 12:01 AM Panlinea wrote:

Hello all i was diagnosed last year April 2014 with HPV Squamous cell carcinoma in my left tonsil. wasnt sure how to start my own thread so have tagged it on to the end of this one. My treatmment consisted of neck disection 6 teeth pulled tumor removed by laser followed by 30 Radiothraphy sessions. And about a year ago was told that i was clear. Two weeks ago i started experiencing symptons such as sore throat, ear ache, pain in my Jaw shrp pains shooting up into my head causing headaches tender gland etc. I telephoned my ENT department and managed to get seen last week 6th Nov and was informed that there was nothing obvious. Today i have had an ultrasound scan and i have been informed that i have a number of abnormal lymph nodes in my neck. I was told by the doctor doing the scan that it could be because i had had lymph nodes removed from other side of my neck and had had radiotheraphy, he also took a sample with the fine needle etc.

Now my question is to those of you who have experienced recurrances and what symptons you experienced. I should find results out next week but i have that feeling there is something not right. or are these symptoms im experiencing common side effects that are nothing to worry about. Any info greatly appreciated.

I wouldn't let up on this until finding out definitively what was causing the string of swollen nodes. It could be a number of things, but metastatic cancer is one of them, hence the FNA. It's the standard method of determining what's going on inside lymph nodes sufficiently close to the skin surface to enable using it. There are any number of causes for what you're experiencing. Wait for the FNA pathology before thinking the worst (read on).

Radiotherapy has numerous long-term side effects, a good number of which do not emerge until well afterward, sometimes years later. Radiation induced fibrosis is one of the well-known "late" effects, and it typically does not have a sudden onset, but it's gradual, and continues developing for a long time. Depending on where the fibrosis is occuring it could also cause a number of different symptoms. It's affected my ear and hearing acuity on the side that took the rads, including closing off the eustachean tube for a couple years, shifting my bite which was severe at one point (since resolved by continuing stretching exercises), and range of motion stiffness with my neck. Hasn't limited it but it is quite noticeable and can be uncomfortable at times. I've also had lymphedema, oddly in the legs, but with 22 lymph nodes missing in my neck, the system isn't working the way it used to. Substantial (i.e. strenuous) cycling or cycling trainer exercise very nearly daily gets rid of it, but if I'm off the bike and not on cross country skis or speed skates as an alternative, it comes back and takes a while to work it back off again. Exercise . . . within the limits of any other medical conditions you might have . . . is not just good for you in general, it also helps to mitigate all the long-term treatment effects. What you experience will depend on the specific location of your radiation field, the specific radiation plan your radiation oncologist created (how many rads and where withithin the radiation field), and how your body continues to react to it, including the magnitude of fibrosis generated. I'm five and a half years out from my radiotherapy and the effects of it continue to evolve.

Welcome to head/neck cancer treatment survivorship. Not that it's a club anyone would want to join, but for those of us that have, it was much better than the alternative of no treatment. Hoping what you're experiencing is late treatment effects, or something other than metastatic recurrence.

John

PS - have your TSH monitored at least annually (simple blood test; can be easily included with annual physical blood panel). Radiation induced hypothyroidism is one of the most common late effects emerging years later.

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