| | 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 | The truth is..it ain't cancer till they can prove it. Worry robs you of the enjoyment of today and your 5 year old. Anxiety causes more stress and can lead to more problems. Biopsy will be about the only sure diagnostic tool at this point. Keep pushing but please take a breath and enjoy today. It will be gone by tomorrow and will never return. You have lost many, many today's since May. You have a gift before you and should this be cancer, every day up till the diagnosis you have been cancer free as far as you know.
Just my opinion.
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: 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 | Uptown
Thanks, true words. I live each day to the max, bar a few days. Today was just one of those. Life is truly a gift and we all have to be happy with what wonders we can enjoy and overcome adversity as i can see you are well placed to understand. Thanks for writing back.
I am fortunate as the change in doctor has made my life much easier. I have seen her once and she referred me straight away even calling me this afternoon to say ent will see me friday.
Xxx | | | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | Tamsin, just want to say pulling for you!!!
(((HUGS)))
53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | | 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 | Mamacita, i really appreciate that, thank you xxx | | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Hi Tamsin - I was so glad to hear that your change in doctor has made your life easier. It sounds like she really cares and is getting things going with the ENT appointment on Friday. Once you know for sure what is happening you will feel so much better. Just taking the right steps can make a person feel more in control and less anxious. You don't have too much longer to wait - Friday will be here very soon. How nice that you have a fire-year-old to help keep you busy and enjoy special times with. Hope everything goes well on Friday.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Sep 2013 Posts: 17 Member | | Member
Joined: Sep 2013 Posts: 17 | I have had 3 primary throat cancers and found each one before the doctor. With your history I think it is good to be looking all the time. Every day in the shower after washing my hair I feel all around the inside of my mouth looking for something that feels different on the left than the right or which feels harder than it should be. About once a week I get out the flashlight and look around the inside of my mouth and if I see a white or red area that doesn't clear up in two weeks I go to see the ENT. Finally that same once a week I feel all around the outside of my neck looking for anything that feels different than it did before. This kind of regular self check will go a long way toward reducing your fear from past nicotine usage.
In 1994 I found a 3cm tumor on my right tonsil. After 3 rounds of chemo, I underwent a radical neck dissection with a peck flap. I had a reoccurance which required twice a day radiation treatments and then had 19 years cancer free. I then found a very small tumor on my right tonsil. It was removed. Then I found a 1 cm mass near the base of my tongue on the left side. I had two partial glossectomys with bad margins and then then underwent Brachytherapy.
| | | | | 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 howard
It sounds like you have really been through the mill. But nineteen years without the cancer is amazing. Thank you for the advice, its really appreciated. What is bracytherapy?
X | | | | | Joined: May 2013 Posts: 187 Likes: 3 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 187 Likes: 3 | Tamsin rest peacefully tonight. Tomorrow begins the answers to your concerns. Regardless of the results you will soon know. It may take some time though and additional tests. So be patient.
Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Tasmin, there is a search function on the forum where you can look up things like brachytherapy and find posts full of info. It just takes a few seconds to run a search.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Sep 2013 Posts: 17 Member | | Member
Joined: Sep 2013 Posts: 17 | Hey don't beat yourself up about the lozenges. It is just great you were able to quit the most addictive drug in the world called cigaretts. Hopefully you will get good news and this will be a benign cyst or something. Vigilant screening of your mouth every day to feel for things that might be different on one side than the other is a good way to gain some comfort. I have had three cancers and found each one before the docs did by doing this. Keep the faith.
In 1994 I found a 3cm tumor on my right tonsil. After 3 rounds of chemo, I underwent a radical neck dissection with a peck flap. I had a reoccurance which required twice a day radiation treatments and then had 19 years cancer free. I then found a very small tumor on my right tonsil. It was removed. Then I found a 1 cm mass near the base of my tongue on the left side. I had two partial glossectomys with bad margins and then then underwent Brachytherapy.
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