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#147848 - 04/06/12 07:34 AM Just got done with a reacurence...
Jodezilla Offline
Member

Registered: 04/06/12
Posts: 23
Loc: Oregon , USA
and now Im wondering, "what percentage do I have of having another one??".
My first surgery was 8 months ago and my reacurence surgery was 8 days ago (the details are in 'introduction' section).

I know we're not suppose to be all about the numbers, but the lack of motivation is definitely taking a toll on me.

Thanks for your time.
_________________________
8/24/11- SCC stage3:tongue reconstruct from left arm & radical neck, feeding tube,trache.
3/28/12- SCC:radical neck again,chemo/radiation.
Started Cisplatin/radiation 5/2/12. Finished 6/13/12.
37yr old male.
7/19/13: All checks/scans have been good. Body weight and strength have return.

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#147857 - 04/06/12 01:15 PM Re: Just got done with a reacurence... [Re: Jodezilla]
AnneO Offline
Gold Member (200+ posts)

Registered: 12/30/10
Posts: 284
Loc: Kansas
Sorry about the lymph node. I had one show up after surgery as well, within 4-5 weeks. Because I did not have any sort of dissection done previously as my tongue lesion was so tiny, and because of the timing, my MO said she would not call my lymph node a recurrence. In other words the cells were on the way before the complete tumor excision. But in all my official reports at MD Anderson, it will say recurrence. So what's in a label? The PA to my surgeon said it could have happened after the very first tongue surgery that I had elsewhere when margins were left because they did not think it looked like cancer and they were just concerned about getting a sample of it. He said sometimes surgery agitates the remaining cancer cells. Who knows for sure.

Bottom line: you will likely have both radiation and chemo. You want it that way because you will definitely be less likely to have a recurrence with the chemo. I realize this does not answer your question about statistics, but it is difficult to find meaningful ones.

I am sorry you are dealing with this and are young. We have a number of members of this forum who are close to your age so you are not alone. Hopefully you have mentioned your lethargy to your physician as it could have a physical basis. We all react in different ways to a cancer diagnosis. It helps to reach out in the way you are doing by joining this forum.

Best,
Anne

_________________________
SCC ventral tongue 9/2010, excisedw/clear margins:8 X 4 mm, 1 mm depth
Neck Met, Oct/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11
GIST tumor sarcoma, removed Sept,'11,no TX needed
Non smoker

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#147862 - 04/06/12 02:54 PM Re: Just got done with a reacurence... [Re: AnneO]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4893
Loc: Toronto canada
Hi there - I said something similar to Anne in response to your other posting... Take care!
_________________________
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

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#148174 - 04/13/12 03:27 AM Re: Just got done with a reacurence... [Re: Cheryld]
Jodezilla Offline
Member

Registered: 04/06/12
Posts: 23
Loc: Oregon , USA
I got the chemo confirmation from an oncologist today. My surgeon told me last week, "looks like we may be able to skip chemo"....turned out to be not so. Today was another one of those "kicked in the face" kinda days. Not sure how my body is going to respond to chemo and radiation, am aprox. 170 pounds at 5'10". I hope to keep my weight on and am going to hit the weights and food super hard this month to try and offset the weight loss later.

Im not sure what this feeling is but I dont like it.....hopefully lifting tomorrow will make me feel better.

Thanks everyone for posting in my thread,
- Jody
_________________________
8/24/11- SCC stage3:tongue reconstruct from left arm & radical neck, feeding tube,trache.
3/28/12- SCC:radical neck again,chemo/radiation.
Started Cisplatin/radiation 5/2/12. Finished 6/13/12.
37yr old male.
7/19/13: All checks/scans have been good. Body weight and strength have return.

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#148185 - 04/13/12 07:24 AM Re: Just got done with a reacurence... [Re: Jodezilla]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8387
Loc: PA
Jody,

Sorry to hear you are having a recurrence. The odds decrease the longer you are out from treatment. You can do this! Its a long road but it can be done! Ive had oral cancer 3x within 3 years. I am now 2.5 years post treatment from my last round of OC. Eat as much as possible and keep taking in a minimum of 2500 calories and 48 oz water every single day and it will be easier.

When you have time please add a signature. This helps us greatly when responding to your questions.

Go to the "my stuff" tab, then click on "profile" on the drop down menu. Scroll to the bottom and type in the white box and click submit.

Good luck!!!!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148203 - 04/13/12 01:39 PM Re: Just got done with a reacurence... [Re: ChristineB]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4893
Loc: Toronto canada
Hey good luck! Chemo can come in two forms depending on hospital protocol, some break it down into smaller doses so you end up with 6 weekly doses - which is easier on the body and you, and some do it in three full doses. Everyone responds differently. I personally had no trouble with it - and mine was delivered in three full doses. A few days of nausea - I threw up a few times but not from chemo - but rather from the copious amount of saliva and drool - courtesy of rads. Others I have known have lived with their head in a bucket from beginning to end - I think most fall somewhere in between. Rads to me is far worse - and compared to most I had few side effects of that as well. Not to say it was easy but rather, easier... I was blessed. You can do this and being healthy, and in good shape really halos! Eat up, and exercise till you can't! Then just go for a daily walk! 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

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#148739 - 04/25/12 06:55 AM Re: Just got done with a reacurence... [Re: Cheryld]
Jodezilla Offline
Member

Registered: 04/06/12
Posts: 23
Loc: Oregon , USA
Got everything scheduled today:
3 chemo treatments (Cisplatin) 3 weeks apart and radiation monday through friday for 6 weeks. I start on the 2nd and am just antsy to get going.

thanks for posting,
Jody
_________________________
8/24/11- SCC stage3:tongue reconstruct from left arm & radical neck, feeding tube,trache.
3/28/12- SCC:radical neck again,chemo/radiation.
Started Cisplatin/radiation 5/2/12. Finished 6/13/12.
37yr old male.
7/19/13: All checks/scans have been good. Body weight and strength have return.

Top
#148740 - 04/25/12 06:56 AM Re: Just got done with a reacurence... [Re: Jodezilla]
Jodezilla Offline
Member

Registered: 04/06/12
Posts: 23
Loc: Oregon , USA
It helps a lot to be able read everyone's experiences and what they went through
_________________________
8/24/11- SCC stage3:tongue reconstruct from left arm & radical neck, feeding tube,trache.
3/28/12- SCC:radical neck again,chemo/radiation.
Started Cisplatin/radiation 5/2/12. Finished 6/13/12.
37yr old male.
7/19/13: All checks/scans have been good. Body weight and strength have return.

Top
#148743 - 04/25/12 12:08 PM Re: Just got done with a reacurence... [Re: Jodezilla]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4893
Loc: Toronto canada
Everyone here is unique combined there's a lot of knowledge, and chances are if you experience something with treatment someone here has dealt with it already. It's great in times when you're freaking out over something you're not sure is normal. It's always great to have someone say - oh yeah that happened to me. - of course you should have always run it by your dr. But on a weekend late at night a posting from someone can be reassuring. This will not be an easy road. Even for those of us who had a relatively light go of it, it was hard, but it has to be done, and there's lots of support here, hugs... And many blessings!
_________________________
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

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#149229 - 05/07/12 07:05 PM Re: Just got done with a reacurence... [Re: Cheryld]
aimlee311 Offline
Senior Member (100+ posts)

Registered: 05/03/12
Posts: 114
Loc: Boston, MA
Hi Jody!

My mom had both cistplatin and radiation together, 6 weeks of both, and she actually responded to the chemo much better than any of us expected. She was not sick at all (very little nausea as she was given anti-nausea meds during and a few days after each treatment) and only really felt fatigue towards the last 1 or 2 treatments. Radiation is really the one that will give you discomfort.

Hang in there, every ounce of fight in you will be worth it. Let us all know how you get on when you start! Best of luck!
_________________________
Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12

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