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#144291 12-27-2011 11:41 AM
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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
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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
AnneO #144294 12-27-2011 01:26 PM
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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 smile
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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.
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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.
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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
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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)
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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
AnneO #144311 12-28-2011 09:25 AM
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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
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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
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