| | Joined: Dec 2011 Posts: 18 Member | OP  Member
Joined: Dec 2011 Posts: 18 | I have reading some of the post from others that are going through recurrence like I am. After reading about JetAge, I am so scared of whats in store for me when I have surgery May 1st for the same thing. Its been 3 years since my 1st surgery and I truely believed that I had beat this thing. Ive had a CT/Pet in the last couple of weeks and so far they haven't said anything about it spreading. Im trying to stay positive but its really hard. I guess I am asking for prayers at this point. I would also like information on what I am in store for. They talked about reconstruction this time around.
Age 55 12/2011 SCC Floor of Mouth,
Stage IV, Partial Glossectomy,
Neck Lymph nodes removed
6 weeks radiation, Peg tube
2/15 recurrence, surgery set for June 9th.
"Praying for the best"
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Hi Sherry,
I'm very sorry to hear about recurrence, especially after three years, most start feeling it is in the past. As you point out, it seems there isn't any metastasis which is wonderful news and that the treatment plan calls for surgery only is also a good indication of it being local only.
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: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | Sherry, I can understand why you're scared. I'm sending you positive vibes. Reconstruction is big surgery but many of us here have been through it and now cope just fine. I've had two reconstructions or "flaps": one on my tongue and one in my cheek/on my gum. Both times I thought it was the end of the world but each time I recovered. It's hard not to look at what can go wrong and what happened to JetAge was tragic. Doesn't mean it will happen to you. If possible treat yourself to pleasant things and food over the next two weeks before your surgery. Eat nice stuff. See a counsellor. Write a journal.
I wish you well!
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | 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 | Hi Sherry, a recurrence is so difficult to deal with. I know. We have been there.
The good news is that it seems there are no distant metastases. So this is still basically a local, or regional , recurrence. You have options still to treat this which is fantastic.
I also think that you should be asking your team more questions. Ask for the results of your CT/PET. You should know this. Ask exactly what your treatment plan is. What exactly they are proposing to do with this surgery? What is the expected recovery like? Will you need a feeding tube? A trach tube?
Have you considered getting a second opinion? Preferably from a Comprehensive Cancer Center. Research has proven that CCC' s have better outcomes for their patients.
I wish you strength for this next phase of treatment. You can do this.
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: Sep 2013 Posts: 105 "OCF Canuck" Senior Member (100+ posts) | | "OCF Canuck" Senior Member (100+ posts)
Joined: Sep 2013 Posts: 105 | Hi Sherry Writting, going out for sushi, going for walks in nature, talking with family & people with health care knowledge. Going out and eating pretty much every day was a major way Stephen & I found positivity & lightness in the face of the big day. For two frugal people we sure made up for it in our month & a half of sushi splurging!  I spent the innitial weeks organizing/calling to send medical info, trying to advance appointments & delegating tasks such as food puree preperation & finances to family & friends. <3 
husband 61@diagnosis painter
6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis
17/9/13 Dx(moderately aggressive)
24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube
2/01/14 (30 tx)rads 60gy
N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes)
Clear margin, close 2mm inner cheek
15/05/14 cellulitis
3/12/14 Chest CT Clear
27/02/15 cellulitis
8/6/15 cellulitis
10/6/15 Osteomyelitis
| | | | | Joined: Dec 2011 Posts: 18 Member | | OP Member
Joined: Dec 2011 Posts: 18 | Thank you all for giving me strength. I appreciate you all. This is going to be a difficult time for sure. I'm starting to get my affairs in order so I won't have to think about anything but recovery. I moved a few months ago to be near my sister and that proved to be a very wise decision. What a blessing, at least I can count on her if I have to.
I will call my doctor in the morning to ask those all too important questions. So far, he hasn't given me all the facts or information that I need. I can't go to a cancer center because they don't accept my insurance. I am seeing physicians at Emory University Hospital here in Atlanta. They did my 1st surgery. They are suppose to be the very best in the south. I sure hope so; I'm depending my life on them.
Again, thank you for all of your support. I will keep you posted on what they say tomorrow about my plan of action.Hoping for the best but preparing for the worst. (Just in Case)
Age 55 12/2011 SCC Floor of Mouth,
Stage IV, Partial Glossectomy,
Neck Lymph nodes removed
6 weeks radiation, Peg tube
2/15 recurrence, surgery set for June 9th.
"Praying for the best"
| | | | | Joined: Jan 2015 Posts: 10 Member | | Member
Joined: Jan 2015 Posts: 10 | Dear Sherry,
your recurrence is local, which means it can and WILL be treated.
Think positive. Fill your mind with positive thoughts only and good things will happen. Sending a prayer your way!
Father had oral cancer stage 4A. Diagnosed 17th May. Partial glossectomy and graphing done from hand. Radiation 30x. Chemo - cisplatin 6 rounds. Finished chemo and radiation in Aug. PET - Nov - recurrence and spread to liver and lungs Chemo started - erbitrux and 5fu. 2 rounds done. Passed away 12/23/2014 - i believe he is in a much better place now | | | | | Joined: Sep 2013 Posts: 105 "OCF Canuck" Senior Member (100+ posts) | | "OCF Canuck" Senior Member (100+ posts)
Joined: Sep 2013 Posts: 105 | I am so glad that your sister is there, you will need her help. It would be great if she could stay in the hospital with you in the innitial days of your recovery. Especially at night when there is a little less staff and you might need help for basic comforts so you can sleep.
Ask your doctor/ surgeon exactly what the surgical plan is. You must ask if they will do "frozen sections"! All cancer surgeries of soft tissue need to be done with frozen sections. This means the surgeon team is freezing all that they remove so they can test it part by part during the surgery. This way they know when they have removed all the cancer plus "over 1cm" of clear margin.
Thinking of you
husband 61@diagnosis painter
6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis
17/9/13 Dx(moderately aggressive)
24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube
2/01/14 (30 tx)rads 60gy
N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes)
Clear margin, close 2mm inner cheek
15/05/14 cellulitis
3/12/14 Chest CT Clear
27/02/15 cellulitis
8/6/15 cellulitis
10/6/15 Osteomyelitis
| | | | | 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 | Hugs to you my dear. Push them to move quickly and get a plan in place ASAP.
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 2014 Posts: 79 "OCF across the pond" Supporting Member (50+ posts) | | "OCF across the pond" Supporting Member (50+ posts)
Joined: Mar 2014 Posts: 79 | Sending you love and positive thoughts , so sorry you have to be here again so bloody unfair! X
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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