| | Joined: May 2013 Posts: 69 "OCF across the pond" Supporting Member (50+ posts) | OP  "OCF across the pond" Supporting Member (50+ posts)
Joined: May 2013 Posts: 69 | hi all I found this site such a support and havent posted since may 2013 when i strongly suspected i had tonsil cancer or base of tongue cancer. One of the members here Sa�d yep sounds like tonsil cancer, go back to ent. I did go back and said look please check my base of tongue and tonsils something is not right. No lumps and bumps, no your fine I was told. The only constant has been a mobile lymph node for two and a half years which was seen via ultrasound and I was told not cancer. Fast forward to present day, been waking up for two months with really sore throat, but no whole throat, just behind left tonsil. So after doctor saying well you don't have tonsillitis, tell me something I don't know, I take the matter into my own hands and poke around behind the tonsil. Can feel a couple of nice smooth lumps, yep the normal adenoids that live there. But next to these on the wall bit behind tonsil is what feels like a large fleshy growth which feels grainy and hard inside. What on earth is that? And right now my tongue papillae are huge and painful, something I've had on and off for two years with again no explanation from doctors. I'm not very happy about all of this. I'm returning to ent Thursday and I want answers. Ps. I've been feeling like I've had a virus for about three years, I even thought I had HIV at one stage. HPV springs to mind. Any thoughts? Tamsin x | | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Hard to tell without scans or a biopsy. It could be a million things.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | 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 | Let us know what the ENT says but IF it was cancer back in May 2013 it would have continued to grow unabated so there is a possibility that this may be something new. Always best to get it checked out like you have been doing.
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.
| | | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Mar 2014 Posts: 286 | The only way to really diagnose it is with a biopsy and fine needle aspiration of the node. SCCs are pretty aggressive, its unlikely to be festering dormant for that long. I wouldn't just assume its just a misdiagnosis. I hope it turns out to be nothing, but let us know how you go.
Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Tamsin - the symptoms you described above about tonsil area and it's feel remind me so much of what mine felt like. Mine was SCC with HPV16.
I'm not saying your's is, it's just really similar to mine.
A fine needle biopsy might do a lot to calm your nerves about this.
take care,
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
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