#6141 10-01-2005 03:41 AM | Joined: Mar 2005 Posts: 54 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Mar 2005 Posts: 54 | Hello all,
I hope everyone is doing as well as to be expected. I sometimes feel like I am being a pest on here when I post my concerns, for there are many here who have much greater concerns than myself, however, I have been beginning to lose some sleep again as of late. A few things are bothering me, and if anyone can offer any advice, AGAIN I would be soooo appreciative.
As some of you may recall, I was biopsied shortly after my surgery, and was dx'd with severe dysplasia in the site of my primary. My ENT AND Rosewell Park thought that because it was so close to the time of the surgery, it may have been due to just that, the surgery and healing process. We have been watching the area and I was told that the dysplasia has "grossly resolved". Well, I was just recently examined with a Velscope (cutting edge technology/currently only 4 in the world) which can detect any abnormal cells before they are able to be seen by eye....and guess what? The same area "lit up". Another biopsy was performed and I am currently awaiting the results. My fear is that it has progressed as well, for I have a couple other symptoms that I wonder if anybody can relate to. I experience, several x's a day this dull/faint pain in my left (same side as tumor and dysplasia) ear. It comes and goes and only lasts about 5 - 10 seconds, than goes away. I mentioned to my ENT, he says he doesn't know wwhat it is, may be just the nerves after having the surgery and trauma to the area. I pray he is right, but this has been going on for months. Also, I work for a hospital, and had an Ultrasound student practice on my neck. Again, on the left side, near the angle of my jaw, when I open my mouth, the tissue is much more prominent on that side than the right. My ENT says it's normal, scarring due to surgery. Well...the Ultra sound showed a 1.5 by .5cm mass, that neither of 2 radiologist could explain. The ultrasonographer said I have the same on the other side, but 1/8 the size. They said it did not appear to be a node, nor scar tissue, and had the echotexture (sp???) of fluid/cyst, but nobody could explain. Quite franky, I am SCARED TO DEATH and my mind is having more and more difficulty letting go and trusting the doc. I have called an oncologist, CCC, and am just waiting and praying my little hiney off. I pray that my ENT is correct and that my fear is getting the best of me, but it feels like the nightmare is becomming more real again. If anyone can offer any advice, I would very truly appreciate. Thanks again!
Rick
Rick T
Stage II SCC(T2N0M0). Dx:Jan.05 Surgical removal w/Neck Dissection (nodes clear) Feb 1,2005.
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#6142 10-01-2005 11:29 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello Rick,
Until they tell you it's cancer it ain't cancer.
Try and calm down and think positive. When will you receive the pathlogy report?
If it is bad news theres no reason you can't beat this again.
Also venting your concerns on this forum is in no way being a pest. All our members like to help anyone who needs it.
Wishing you the best of news!!!
Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#6143 10-01-2005 12:23 PM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Rick, ditto Danny Boy's post...also, vent away, we are here to help each other! God Bless, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#6144 10-02-2005 03:22 AM | Joined: Mar 2005 Posts: 54 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2005 Posts: 54 | Thanks guys...I should be getting the results sometime this week. Your support is greatly appreciated!
Rick T
Stage II SCC(T2N0M0). Dx:Jan.05 Surgical removal w/Neck Dissection (nodes clear) Feb 1,2005.
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#6145 10-02-2005 05:02 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Hang in there Rick...I know you are scared, that`s not being whiney thats being normal!
Let us know how things go tomorrow, we will all be thinking of you.
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#6146 10-03-2005 06:09 AM | Joined: Mar 2005 Posts: 54 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2005 Posts: 54 | BIOPSY NEGATIVE !!! THANK GOD!!! Thank you guys for your encouraging words!!!
Rick
Rick T
Stage II SCC(T2N0M0). Dx:Jan.05 Surgical removal w/Neck Dissection (nodes clear) Feb 1,2005.
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#6147 10-03-2005 06:28 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Yay!! Glad to know you're in the clear, Rick. This makes me think I'll pass on the Velscope technology, though, until I have really healed better than I am now from the radiation. Is it only supposed to light up for cancer cells or for any type of abnormal? Is there data on the percent of false positives?
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#6148 10-03-2005 01:39 PM | Joined: Mar 2005 Posts: 54 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2005 Posts: 54 | The Velscope is a screening device with supposedly greater specificity than the Vizilite and doesn't require a rinse. Inflammation, trauma, scarring, etc., all "light up" different when exposed to the light. It cannot differentiate between cancer and dysplasia, however, which is why the biopsy was needed. For some strange reason (I'll try to get an explanation from the dentist), the biopsy came back normal. Needless to say, I am overjoyed!!! It will become a routine part of my screening, for if there is any chance of detecting dysplasias which cannot be seen by the naked eye...I am all for it. I will keep posting as more info becomes available. Take care and hope all is well!!!
Rick
Rick T
Stage II SCC(T2N0M0). Dx:Jan.05 Surgical removal w/Neck Dissection (nodes clear) Feb 1,2005.
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#6149 10-03-2005 04:59 PM | 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 | Rick,
Even a PET/Ct scan will light up areas of healing. Until there is a biopsy to confirm any suspicions, work hard at not worrying what it isn't...until they can prove what it is. I don't know if I speak for everyone but I suspect the majority of us worry incessantly at times and do not worry at all sometimes. As more time passes you will worry less. You have endured a heck of a lot already just hearing the big C word and then came surgery and treatment.
I am glad for your results and I hope for many more tests with great results.
Ed
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
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