| | 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 | Tony, I agree with the others, a second opinion is something that would be an excellent idea. Weigh all your options carefully and choose what is best for you. I wish you the best of luck 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 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Hi Tony
I am sorry to hear that the news you got was not very good. Like others here say in the end the decision has to be yours but I wonder when I hear a statement like �I think jugular vein�!
My feeling is that you should only make that decision when you have all the facts.
I know CCC�s are few and far between in Australia but is there another one you can go to in WA for a second opinion. If not what about one in another state?
Please let us know what you decide and as you know the OCF family is here for you.
Love
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Jun 2010 Posts: 27 "OCF Down Under" Contributing Member (25+ posts) | | OP "OCF Down Under" Contributing Member (25+ posts)
Joined: Jun 2010 Posts: 27 | Thank you, I am going to get that opinion before anyone puts 4 types of chemo in my veins!!! They are so matter a fact about it like well your going to die anyway so it doesnt matter . It does matter..............Quality of life the surgery was needed 100% but this type of chemo is savage!!! and could kill me in a week so 9 months of life or couple of weeks of hell. I bet he would want a second opinion. Plus I dont want to spend the rest of my days in and out of hospital. I want to do all the things I have not yet done. Sorry for going on a bit but I dont think they look at every thing!!!
Tone
lyph node positive 10/08
Parotodectomy 4/09
Rad six wks 65 grey
Pet scan clear 03/10 no primary
Pet 01/10 base tonge primary
CT 3.5 Tumor 01/2010
radical tongue reconstruction
with forearm flap 2/10
severe Trismus 06/10
| | | | | Joined: Jun 2010 Posts: 27 "OCF Down Under" Contributing Member (25+ posts) | | OP "OCF Down Under" Contributing Member (25+ posts)
Joined: Jun 2010 Posts: 27 | Me again does anyone know who might be good to see for a second opinion in WA ??? Tone
lyph node positive 10/08
Parotodectomy 4/09
Rad six wks 65 grey
Pet scan clear 03/10 no primary
Pet 01/10 base tonge primary
CT 3.5 Tumor 01/2010
radical tongue reconstruction
with forearm flap 2/10
severe Trismus 06/10
| | | | | 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 | Hi Tone
I'm so sorry that you are dealing with this diagnosis. I agree, getting another opinion is a must. I can't help with anyone in particular to contact for a second opinion. The Cancer Council should be able to give you some advice and names of specialists who can help you. They would have lots of experience dealing with all different cancers and who's who in head and neck cancers in your state. The West Perth Cancer Council contact number is 9212 4333.
Best wishes
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: Jun 2010 Posts: 111 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2010 Posts: 111 | hi tony. youre faced with a difficult decision but your first priority should be to get a 2nd opinion. my mom was told shed had a year or 2 to live and we didnt even make it 2 months. i think the chemo was too much for her, after everything shed already been through (radiation 70 times, 3 big surgeries). If you find you receive the same opinion I would choose quality of life over the awful barbaric treatments.
I wish you the best of luck
my mom, age 59.
12/08 surgery & 33x rad
4/09 recurrence
5/09 surgery & 35x rad
12/09 recurrence
1/10 surgery. peg tube, trach, fibula free flap
6/10 recurrence. double chemo treatments.
8/10/10 finally at peace in heaven
| | | | | Joined: May 2010 Posts: 135 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2010 Posts: 135 | Tony, I am so sorry that you are so having to face this decision. Just want to offer you my love and support for any decision you make. I totally understand not wanting to spend remaing weeks/months in and out of the hospital and enduring, as Emily so eloquently said "the awful barbaric treatments". I hope you will do all the things you have always wanted to and then some! ( I have a very dear friend here who had just made the decision to stop chemo for liver cancer. He said he'd rather go fishing and spend time with grandchildren as long as possible rather than being sick as hell and not being able to enjoy those activities.)
Wishing you the very very best.
Dodie
Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Tony, I am so sorry about the news you have been dealt. cancer is so unfair. I support whatever decision you make as it is not an easy decision. I will praying for you and your family.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Sep 2009 Posts: 177 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 177 | Tony, I am so sorry you are facing all of this. I might even consider getting a third opinion. I can agree with wanting quality of life, but I think we might all handle chemo differently just like radiation. If you are healthy and strong right now, maybe you will handle it much diffrent than someone who is currently weak and ill. Anyway, I will certainly keep you in my thoughts and prayers.
Wendy
46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear
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