| | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Hi, Brendan - glad to hear you will be getting a second opinion soon. It sounds as it your persistence is still in good working order. As a rugby player, you know hope to keep fighting - best wishes for a better new year!
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2011 Posts: 571 | Glad to hear you are going with a specialty facility. Please, hang on to hope. There doesn't seem to be enough metastases to believe you have a fatal recurrence.
I understand the appeal of thinking about the worst case scenario. It prepares us for terrible news and anything less dire is a cause for happiness and relief. Do not buy into a personal doomsday prediction made by your doctor. No one can tell you how much time you have left on your life clock.
Best wishes with your second opinion. I hope it calms your fears and gives you a plan of action that is curative rather than palliative.
Take care!
Sandy
Last edited by Sandy177; 12-28-2011 06:45 PM.
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Do push for yourself... Seriously, go to see the second specialist!ngood luck, and much love to you never give up hope!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | | "OCF across the pond" Senior Member (100+ posts)
Joined: Apr 2011 Posts: 131 | You should have second opinion, I did as my local hospital gave me a poor prognosis and really scared me! I went to London charring cross and had the best treatment and am now clear and fingers crossed will stay that way! Never give up any hope and explore all avenues each hospital has different ways of treating us. I have heard Christy,s in Manchester is a reAlly good hospital.
Keep the faith Brendan pma really does work!
Hugs and stuff
Jayne
Scc nasal cavity /hard palate
Surgery removal of septum and roof of mouth 15/3/11 cl margins
Rt and cisplatin 6 weeks starting 24/5/11
Obturator
Age 45
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Brendan,
I'm sorry you're in such an predicament. I wish you all the luck there is in this world as you get a second opinion at the cancer center in Manchester. Until then, I wish long and plentiful moments of peace. I look forward to hearing some hopeful news from you soon.
With great care,
Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Good good, Brendan. We're all with you in this fight.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Mar 2011 Posts: 26 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Mar 2011 Posts: 26 | My husband had a recurrence 6 weeks out of treatment. We got opinions after that from his original doctor at Mayo, Emory in Atlanta, and then Johns Hopkins in Baltimore. I think the more educated we can get, the better. They all agree that there are many more tools in the toolbox. He is in a clinical trial right now and feeling well. We were told that as long as he remains strong and can tolerate treatment, he is the perfect candidate for living many more years. They don't say how long, because they just really don't know.
Anyhow, don't give up. There are lots of options we were told!
Robin
Robin, caregiver to husband, Andy (57 yo non-smoker)
1/2011 dx scc stage 4 -primary- tonsil/bot
2/2011 surgery/rnd/ imrt rad/ 3 cycles cisplatin
6/2011 recurrence - mets to bone
7/2011 tx carbo/erbitux/5 FU- pet showed disease progression
11/2011- present clinical trial
| | | | | Joined: Jun 2011 Posts: 9 Member | | Member
Joined: Jun 2011 Posts: 9 | What do the initials NED mean? Thanks
Debra 57 y/o female,
5-2-11 dig. Scc well diff invasive gum cancer
5-17-11 consult MD Anderson
6-15-11 mandibulectomy, w/fibula free flap, rem all teeth, neck diss removal 75 nodes one side, IRMTx30, 1.2cm submucosal tumor invading tooth socket. cT4N0M0 (IVb)
1-24-12 clear CT scans to date
| | | | | 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 | No Evidence of Disease Here is a list of common abbreviations you will see on the forum. Abbreviation List
Last edited by ChristineB; 01-25-2012 03:22 PM.
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  | | |
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