| | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Eileen,
Thank you for your information. I know HUP is one of the best but the doctor and I didn't get along very well. He was very cold and I need someone with at least a little compassion:)
The doc I see FCCC is a surgeon. I agree with you, the pain in my ear and constant pain on my tongue is not right. She keeps saying it just looks irritated but isn't that the problem? No scans, nothing done to determine the ear pain. The ear pain just started about 3 wks ago. I did see her when I started to feel that and by the time my appointment came around my ear and tongue felt considerably better. I'm sure that is why she was not too concerned. However, the ear pain is back on and off and the tongue pain is on mych more than off.
I'm thinking about asking her to biopsy it so I have some piece of mind. As you may have seen in previous posts, I'm getting married in March and I don't want this hanging over my head.
Does anyone think it is silly to ask for a biopsy? lol
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:)
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | No it isn't silly. Ask them for one. I had one done a few months ago for mt ear. They did the biopsy by doing a needle biopsy right below my right ear in the Gland. It's not the best of feelings , but it relieves your mind.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | I agree. Having piece of mind is huge
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:)
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Explain to them that the pain is persistent, it comes and goes but is persistent and tell them you need to know why..don't ask but insist. You've had confirmed SCC, so it's not silly to ask. My ear and toothaches were directly related to my cancer. I'm not saying yours is cancer related but it hurts for some reason and you need to know why. After a series of tests they determined I had some hearing loss, but nothing abnormal for my age, I also had no infection, so after the process of elimination my ENT said it was most likely cancer related and he was right. I was complaining about on again and off again ear pain for about 2 or 3 months before I was diagnosed for OC.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | You said it best..I have to insist. I usually just ask and whatever they I say I say ok. Then I get in my car and kick myself. Thank you for the confidence. I'm ready to go in there and not leave until I have some answers.
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:)
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Remember, the doc you are seeing is a surgeon. She may not be the best one to diagnose ear pain. Maybe you need an ENT. As for the biopsy, do you have a specific spot that hurts that you can request them to biopsy? If not, I'd request a PET/CT first. Whatever, you are right, you need to get to the bottom of what is causing tis persistent pain. If you current doctor won't do it, see another one.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Thank you all. I go on Monday so I'll let you know what happens:)
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:)
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | I went in today because my ear pain was getting worse and I could feel a hard spot and a very sensitive spot down inside my pharynx on BOT -- I also wanted a referral for throat dilation -- Doc Haakenslash (ENT and Oral Surgeon) decided that a biopsy was in order to see what was up before other stuf like dilation.
I have to say it was not fun because of where it was located -- Any further down would have meant in-patient surgery, but he was able to numb it some (not fully, fortunately I have some pain tolerance) and had to do some wrestling to get some snips, as he couldn't get a good enough angle for the punch tool.
I am starting to associate that office with pain and realize it's no coincidence that the chair is a lot like the kind one finds in a dental office <grinz>!
We all forgot about pain meds, but I called nurse from ferry when the numb started wearing off and got a script phoned in to the pharmacy. Good stuf, that hydrocodone!! Ten minutes after taking it, the site didn't hurt, the ear didn't hurt and the headache was gone!
Asked about what we will do next if biopsy (due Monday, another fun waiting period) comes back with SCC, expecting to lose a LOT more tongue, but he said we'd do surgery and another graft to fill the void and prevent future problems. I told him I had another forearm, two legs and a lot of shoulder to recycle!
Tune in next week when we find out if there's going to be another PEG in Pete's future!
PS On the good side, I stopped by the pet store and they had my four, male Long-Tailed Norwegian Hamsters ready to take home -- I now have a lot of company named RatHuey, RatDewey, RatLouie and RatPhooey!
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | They did the biopsy while you were awake?!? I've always been in la la land for any procedure:) I guess I've been lucky.
I will be thinking about you and I hope your biopsy comes back with no SCC. Definitly keep us posted.
In the mean time enjoy your hampsters...I love the names you picked out!!!
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:)
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 |
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.
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