| | Joined: Jan 2014 Posts: 31 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jan 2014 Posts: 31 | Well, it's official. Recurrence. That sucks. I mean it really sucks. Well differentiated but PNI involvement to add to the suck.
I suspect we had PNI involvemnt last time, too, which is why we're here.
But there you go. Staging, then a plan.
Caregiver to mom Chris, symptoms started 12/18/13. Biopsy 1/18/14, Diagnosed t2n2 2/3 2014. 3x Carboplatin and Taxotere finished 4/21/14. Chemo/Rads 8 erbitux 36 rads began 5/12/2014. End 6/20/2014. Pnuemonia 6/23/2014. 1 month in hospital 3 in rehab. PEt NED 11/8/2014, T3 recurrence DX 3/4/2015. Hemiglossectomy/mandiblectomy 4/27/2015. 30 rads end 07/24/2015. 4 years NED.
| | | | | 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 | Im so sorry to hear the biopsy came back as a recurrence. Ive been down that road and I know all the mix of emotions you must be going thru.
Just remember, this time around you are so much smarter than before. You understand more about this awful disease. The medical team is already on board. Not that any of this makes it easier to accept the bad news but at least you arent starting at square one.
Hang in there! We are here for you.
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: Jan 2014 Posts: 31 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jan 2014 Posts: 31 | Yes, Christine. I am totally with you on that. We are much, much smarter and well informed. I know mistakes we made last time and don't intend to make again (although I'm sure I'll find new mistakes to make). I think she's in better shape physically starting treatment this time and hopefully that helps a little with the grind, too. Won't get staging back for another day or two but her surgeon was pretty optimistic about the whole thing at the time of the biopsy.
Caregiver to mom Chris, symptoms started 12/18/13. Biopsy 1/18/14, Diagnosed t2n2 2/3 2014. 3x Carboplatin and Taxotere finished 4/21/14. Chemo/Rads 8 erbitux 36 rads began 5/12/2014. End 6/20/2014. Pnuemonia 6/23/2014. 1 month in hospital 3 in rehab. PEt NED 11/8/2014, T3 recurrence DX 3/4/2015. Hemiglossectomy/mandiblectomy 4/27/2015. 30 rads end 07/24/2015. 4 years NED.
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Sorry to hear the bad report. As you say, you are a lot more experienced this time around and that will help make the process more familiar.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | 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 | I'm thinking of you and your Mum. We too have been down the recurrence road. I was terrified. Kris had his recurrence 10 months post rads and chemo. Most recurrences ocur within the first 12 months. I'm not sure where your Mums tumor is, so can't guess on what surgery they will offer. My advice is to treat this aggressively. If the surgery sounds outlandish, do it. I have seen a few on this board who have refused surgery due to what they quote as too severe quality of life effects. Not 1 is still around to post. Kris had very drastic surgery and here he is , alive and well 3 years later.
Keeping you both in my thoughts and prayers.
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 |  sorry about the recurrence - push them to move quickly - 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: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Recurrence is so unfair. So is to get this dz in the first place. I'm very sorry that you have to be in this dreaded situation, however, I am happy to hear that the team is optimistic. Here's to kicking cancer to the curb once and for all!
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: Mar 2014 Posts: 79 "OCF across the pond" Supporting Member (50+ posts) | | "OCF across the pond" Supporting Member (50+ posts)
Joined: Mar 2014 Posts: 79 | Hi I was sorry to hear of the re occurrence, reminded me of what I'm currently facing , your not alone and never will be in this forum, support is plentiful . I have a little
white thing under my tongue for about 3 months , the dentist hoped it would have gone by now but it hasn't . So it's being removed within the next week and a biopsy . So it's back to feeling stressed and sick with worry !
Take care
Di 47 none smoker / drinker
T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
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