| | Joined: Jun 2011 Posts: 46 "OCF across the pond" Contributing Member (25+ posts) | OP  "OCF across the pond" Contributing Member (25+ posts)
Joined: Jun 2011 Posts: 46 | After having an SCC removed in late November from my right collar bone area, and another removed from my Adams apple area in early December 2011, I've now been informed that they were both cancerous.
On seeing my Oncologist,I was told that my cancer is not curable and it will significantly shorten my life span. He said I was looking at having around 2/3 years left,and much much less than that if it spreads to a vital organ.
This Consultant says he doesn't think there will be any great advantage in giving me more chemo now,but to wait until any more nodules pop up and they can then do what is necessary then.
My family are urging me to get a second opinion - it's not from a lack of trust angle re. the diagnosis , more just a question of treatment timing to give me the best chance.
Anyone with any experience or input re. same would be very appreciated.
50 yrs.Non smok.Mod drink.
Tongue canc SCC T2N0M0.
Surg. Jul '11 1/3 rd of tongue rem. & sel. neck diss.PEG fitted.
Aug '11 6 wks chemo/radio.3 more canc. nodes rem.
Feb '12 18 wks chemo.
Nov. '12 Mod rad neck diss on right, & pec flap rep. rem. of tumour under chin. More rad to follow in 2013.
**update** Passed away September 26, 2013
| | | | | Joined: Dec 2010 Posts: 291 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Dec 2010 Posts: 291 | Brendan,
Well, yes, I think you should definitely get a second opinion! Try to get to the best doc if at all possible. I would assume there are some other cancer cells lurking around, why not chemo now to try to get them? Lots of people go on chemo and get more time that way; they live with cancer. I guess they scanned to see if your lungs were clear.
Anne
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Brendan:
I agree with Anne, 100%. GET ANOTHER OPINION from another doctor. There have been others on this Forum that have done just that, and they're still with us. Keep in touch.
Hugs from julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | You NEED a second opinion. Chemo is not curative for SCC. There are better ways to deal with this. Any doctor that is speculating on how much time you have left is guessing. Combine that with a chemo approach to a situation that chemo is not the first tool in the bag for, and I'd want someone else to manage my situation, Ideally a team of people including a radiation doc, and a head and neck surgeon. When they all weigh in on your situation, you will have a better plan, and be working towards complete eradication of this.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2011 Posts: 571 | Hi Brendan,
If at all possible, please seek a second opinion from a facility that specializes in the treatment of cancer. Preferably, one that has a top-notch oral cancer team.
In the US, patients seek out Comprehensive Cancer Centers for treatment and for second opinions to verify that treatment is appropriate, to get the diagnosis confirmed, to have access to advanced treatment options, etc.
Words cannot express what a huge difference it made that we sought a second opinion from a CCC.
Last edited by Sandy177; 12-27-2011 07:06 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 | Hi I totally agree with all the above opinions... Why allow it to move ??? To a vital organ??? Seriously. Fight it! get a second opinion, while its still possible... Enroll in clinical trial... Read back on the survivor forum, there is someone who posted recently who was a write off (according to them) this person had lung mets! 3 almost 4 years later - and 2 clinical trials - later they are expecting to be declared NED,.. Please see someone else! Good luck and hugs!!
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: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Please make SURE you carefully take in what all the others have said - I totally agree. If you need to read, and re-read, and re-read Brian Hill's response. You DEFINITELY need someone else to manage your case. Hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Dec 2010 Posts: 291 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Dec 2010 Posts: 291 | Brandon,
Just had to write again because I cannot get it out of mind how your oncologist talked to you. While at first I might be depressed if someone said that to me, later I would be angry!
I don't know what your options are there for medical care, but you really need someone who is proactive and considered among the best. Your doctor, whose attitude is, let's see what else pops up and then do something, is NOT the kind any of us need.
Please make some inquiries as soon as possible. And let us know!
Anne
Last edited by AnneO; 12-28-2011 06:19 AM. Reason: spelling
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
| | | | | 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 | Ditto!!!!!!!!! Seriously this dr does not have your best interests at heart find someone else. Someone able to think outside the boy and fight for and with you! Hugs!
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: Jun 2011 Posts: 46 "OCF across the pond" Contributing Member (25+ posts) | | OP "OCF across the pond" Contributing Member (25+ posts)
Joined: Jun 2011 Posts: 46 | Many thanks for all your input - I am humbled by your attention. I had extra MRI and CT scans immediately before this prognosis (they were clear, as were my original ones in June) and regularly see the Max/Fac surgeon who performed my operations.
I'm now making swift progress in getting myself referred to the specialist Christie cancer hospital in Manchester for a second opinion.
My 'hope' came crashing down on 23rd December, but I have to explore every avenue.
Last edited by Brendan Hanavan; 12-28-2011 01:14 PM.
50 yrs.Non smok.Mod drink.
Tongue canc SCC T2N0M0.
Surg. Jul '11 1/3 rd of tongue rem. & sel. neck diss.PEG fitted.
Aug '11 6 wks chemo/radio.3 more canc. nodes rem.
Feb '12 18 wks chemo.
Nov. '12 Mod rad neck diss on right, & pec flap rep. rem. of tumour under chin. More rad to follow in 2013.
**update** Passed away September 26, 2013
| | | | | 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: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | 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 14 years all clear in 6/23 | 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: 6 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: 6 | 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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