| | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | OP  "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 |
It grieves me so much to write this.
Kris has had a reocurrence of his BOT tumour. There is no spread on CT - a local reocurrence at BOT only
We saw the Head and Neck team @ Auckland hospital today.
He is scheduled to have a total glossectomy/Laryngectomy and Trans flap with permanent tracheostomy.
I'm so scared. Can anyone help me with what to expect?
How as a caregiver/wife can I make this as easy as possible for Kris? What will life be like afterwards for him?
What "aids" for communication would be best?
I'm absolutely gutted.
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: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | That's terrifying - I'm so sorry! That's a lot of surgery for a local recurrence! I guess they want to make absolutely sure they get it all. There are a couple of people here who've had total glossectomies - I'm sure they'll pop in to help. I Know you have a great team... However there was a fellow here training with my dr, last year - he learned a surgical technique that was pioneered by my dr that allows a real time view of the cancer as they're cutting. That way they are pretty certain that have got it all... Mind you they can't see on a cellular level, but if here's follow up chemo and rads it will take care of that most likely!!! His name Is dr gundulac (awesome young dr. And to be chosen to work and learn from my surgeon, he's got to be a top dr. Himself.) Anyway he left Toronto and is back in Australia - where? I have no clue but maybe he could help. Regardless good luck! And I'm saying prayers for you both.
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 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 | Im so sorry your husband is facing a recurrence! There are a few others who have gone thru this. Cheek posts by Miss Kate who has had a total glossectomy. There is another site which can help called webwhisperers. I met a few people from that site when I was working on the TRUTH commercial. There have been some recent advances with doctors (I think in Italy) growing a new windpipe for a cancer patient. The article was on the OCF newsfeed. Best wishes with everything!
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: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Tammy,
I'm so sorry for what you and your husband are experiencing. I wish I had some advice to offer, but just know that we are here for you when you need support. I hope that you find some answers in reaching out to the folks on this forum who have gone through total glossectomies.
Take good 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: Jan 2011 Posts: 123 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2011 Posts: 123 | I am so sorry to hear this. We were facing this with Ken and it is so scary. I don't know if you have an iPad but we got one for Ken and bought an app ( kind if expensive around $200) but it was going to let him type by picking words if would speak for him. I think it was called proloquo2go.
I wish you strength and peace through this latest chapter.
Take care,Jill
Jill..CG to Ken, age 43,mom of 1yr old girl.
DIAG:12/9/10 SCC BOT T4N0M0 HPV+
START:1/3/11 IMRT dailyX35 and 7 chemo
END:2/23/11 PEG IN:1/15/11 Out:4/26/11
CT/MRI 4/25/11-marked improvement CT 6/11 new spots
BX 6/23-cancer present
Total Glossectomy sched 7/20/11
7/19/11 Ken's suffering ended
| | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | Tammy
If you do a search for posts by PeteD, you will find informative threads regarding a total glossectomy, plus useful tools helping with communication/speech issues following those procedures.
Best wishes to you and Kris during this difficult time.
Karen
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Aug 2010 Posts: 75 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2010 Posts: 75 | Tammy, I have felt the indescribable terror you are feeling...I'm so sorry. The most useful tool to have on hand directly following the surgery is a board that will allow him to write on using just his finger. We used the Boogie Board sold by Brookstone. We also used a squeak toy in the hospital so he could get my attention....that is what finally allowed me to rest. Once healed Jim was able to use an electro larynx although he preferred the Boogie Board and iPad-we used the Speak-It app. I would be happy to answer questions you have - I know had a ton of them myself!
Last edited by Gerri; 02-24-2012 06:18 PM.
CG to sp age 53
4/10 BOT IVb
6/10 Ttl Gloss Lrngectmy L Mndbltmy 5+ Nodes
7/10 Cispl & Rad
1/11 recur lung mets
2/11 Clin Tr Erb Carb 5FU last 5/11
7/11 Tumor growth began wkly Bleo, Taxol, Carbo
10/28/11 Hospice; Passed 11/7/11
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | OP "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Thankyou for the replies.
I'm slowly coming to terms with this and know I have to be strong for Kris -but boy is it hard.
I bought him an Ipad today so will look for the speak it apps and get him to master it all before surgery. I will look for the boogie board - probably online as don't know where to begin looking over here.
One day at a time again. I can't look too far ahead as it terrifies me.
Our lovely boys are back at uni and that's where I want them to be - to finish their degrees. I'm pained at the worry and distress they must be feeling too.
Thankyou all you lovely people,
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: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | You have the strength to do this - you have no idea how glad I was it was me with the cancer, I knew I could handle it - emotionally it would have been far worse for it to have been a family member - I cannot imagine what your going through... But together you will get through it - I had three in university but two of them were living at home at the time. We always told them we were doing what ever we could to beat it, there is always a chance of recurrence, and they know this so we told hem to go on and live their lives. They did we kept them informed but it wasn't to forefront of our lives. It's good they are away that way you can focus on the healing process etc... Good luck an many blessings to you. Also don't stop looking to the future - but do live for the now, remember even without cancer - none of us is guaranteed a tomorrow...hugs
Last edited by Cheryld; 02-25-2012 07:59 AM.
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: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Tammy, my thoughts are with you and Kris. Even for me it's hard to imagine what you're going through. I believe Dr. I. Brook, who posts here and is an MD who had a laryngectomy if memory serves, could be a good resource. Believe that's his screen name (with or without spaces).
All the best to you both from up here.
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
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