| | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) |  Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | As a patient I would hate NOT to know but I would also HATE to know considering all things. Damned if you do....Tough decision but you have made the decision so go with it.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | 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 | I would tell him at some point, soon. Not to ruin his Christmas, but he should know - I would tell him one dr. Said he was clear, but you got another call and they want to check out a spot - that has been there a while and seems to have gotten smaller. It's probably not cancer but better safe than sorry so they want to remove it and that way it's gone - which is better than not knowing.
I would have chosen the earlier time as well. Hugs. Im not going to say sorry because I think it's possibly scar tissue or what not. And I'm sticking with that, 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: Feb 2012 Posts: 151 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Feb 2012 Posts: 151 | I-just-wanted-to-thank-everyone-for-their-input-of-ideas,it-gave-me-some-different-sperpectives-to-consider.
I-know-I-made-the-right-choice-but-he-has-asked-me-a-couple-times-"what-did-the-nurse-really-say-when-she-called?"He-even-said-"you'd-better-not-lie-about-this"not-in-a-threatening-way-but-light-hearted.Also,asked-me-if-I-was-not-telling-him-till-after-the-holidays-so-it-won't-ruin-Christmas.
I-think-he-knows-there-is-a-possible-problem-but-with-his-"no-need-to-know-attitude"-he-is-content-in-not-knowing.If-he-really-wanted-the-truth-out-of-me-he-would-use-our-standard-"do-you-swear-on-the-Bible".Believe-me,he-has-no-interest,doesn't-even-know-the-name-of-his-rare-cancer-or-the-stage.He-is-content-with-me-making-all-the-decisions-and-just-telling-him-where-and-when-to-go-with-no-details.
I-guess-it-works-for-him.He-has-no-trouble-sleeping,not-like-me-who-has-been-up-the-last-3-hours.
Thanks-again-for-all-your-support-and-have-a-wonderful-Chrismas.
Last edited by ChristineB; 12-25-2013 03:54 AM. Reason: removed religion reference
Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Terri,
Have a wonderful Christmas with your Family.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | 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 | Hope things went well today...
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: Feb 2012 Posts: 151 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Feb 2012 Posts: 151 | WONDERFUL NEWS!!!!! Everything looks good. Couldn't even find anything to biopsy. Thank you God and Merry Christmas to us!! (sounds like it was just the gunk Jeff gags up every morning.) They had to suction a lot out. Will refer him to a lung specialist to check for allergies, ect.
***UPDATE on my plan to not tell Jeff. I waited till 5pm Christmas afternoon and and started telling him that like are daugher-in-law just planned a trip for our son's 30th birthday and called him at work to say they were leaving on a plane in 2 hours for NY" I told him he had 1 1/2 hours to pack leave since I made reservations in the cites (at the Hope Lodge). He knew right away that it was medical and wasn't happy that I hadn't told him the truth. After the shock wore off he realized it was the best thing I could of done. Just knowing his attitude last night and this morning before surgery proved it would of been a bad week and awful Christmas. I also found out that between our 4 adult kids and 15 year old only one can handle details and the other 4 don't want to know anything, just like their dad.
Thank you for your thoughts and prayers!!
Last edited by terrib; 12-26-2013 08:34 AM.
Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.
| | | | | 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 | Yeah!!!L  have a merry after Christmas.
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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Wonderful Terri.
Pays to trust your instincts.
Tammy.
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | 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 | What a great story Teri! Glad you enjoyed your Christmas. But I'm really glad to hear they couldn't find anything to biopsy.
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
| | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Great news Terri, I'm glad it all worked out!
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
| | |
| Forums23 Topics18,168 Posts196,924 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
