Patient / Survivor Header
Topic Options
#148960 - 05/02/12 06:23 AM Radiation or wait and hope? difficult decision
DanB Offline
Member

Registered: 03/03/12
Posts: 8
Loc: Indiana
My wife had gum cancer and they removed it and the pathology report was pretty good. They said it was a close call and we could just wait and monitor or do a neck dissection to be safe. He recommended the neck dissection. We agreed and went with "be safe" approach.

The neck dissection went well. There were nine lymph nodes taken. Of those 8 were fine and one had a small (.5 cm) invasion that was encapsulated (so h1n1m0 I think). The doctor said he was pretty sure all the cancer was out, but we could do radiation as an added precaution. He noted we would only be doing it down on the neck so there would be less side effects. Still, he said he felt it was all out and recommended NOT doing radiation and just monitoring closely.

What a decision. You hate to be wrong either way. I think the most difficult part is we don't really understand it well enough to estimate the risks, side effects, etc.

Anyone who can share some advice or experience in this area appreciated.

Top
#148961 - 05/02/12 06:37 AM Re: Radiation or wait and hope? difficult decision [Re: ]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 7942
Loc: PA
Welcome to OCF! Your situation is why I tell new members to go to a cancer center; where a whole experienced team will discuss the case on an individual basis. Its such a difficult decision to make and only you with your family can decide whats right for you. I am one who is proactive and would hit it hard to hopefully avoid having to do anything else in the future. There are NCI treatment protocols cancer centers go by, lesser facilities sometimes go their own route. If you havent gone to a NCI cancer center how about checking one out for a second opinion? Cant hurt to hear what they have to say.
NCI Cancer Center List

Best wishes!


Edited by ChristineB (05/02/12 06:43 AM)
_________________________
Christine

SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 rad end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
total of 185 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 hospital extended 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

Top
#148962 - 05/02/12 06:58 AM Re: Radiation or wait and hope? difficult decision [Re: ChristineB]
DanB Offline
Member

Registered: 03/03/12
Posts: 8
Loc: Indiana
Thank you. Actually I have a couple other posts under DanB, but I couldn't get my user name/pass fixed so I set up again.

Yes we are going to just talk to our GP who we know and trust to at least tell us what to consider.

I also did some serching and found there is a good discussion on this exact topic here:

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=146873#Post146873

It looks like most people advocate "better safe than sorry," and I think I agree.

Thanks again.

Top
#148963 - 05/02/12 10:37 AM Re: Radiation or wait and hope? difficult decision [Re: ]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 7942
Loc: PA
Banks, check the flashing envelope by the My Stuff tab. On the drop down menu click messages. I can combine your user names.
_________________________
Christine

SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 rad end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
total of 185 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 hospital extended 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

Top
#148969 - 05/02/12 12:31 PM Re: Radiation or wait and hope? difficult decision [Re: ChristineB]
Cheryld Online   content
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4603
Loc: Toronto canada
Hi there!! I agree with Christine if you're not at a cancer center get a second opinion there (I could be wrong but I suspect you're not by the number of nodes removed - I rarely see less than 20) - sometimes if there is a little left hiding in a node somewhere and if its just a few cells it won't show up on a scan and despite possibly being a slow growing cancer (not sure if your wife's was well differentiated, moderate or poor) it can take off like wildfire if there's any left, and can be hard to catch at that point. I'm of the do what you can now ilk. My surgeon/ENT - who is tops in his field told me in hs opinion I was cured but recommended me for rads and chemo regardless. He also removed 40 nodes -- one was positive. Tell your wife to give herself the best chance possible - by doing all she can to fight it now. Good luck!
_________________________
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

Top


Support OCF
Shop Amazon and Help OCF Help OCF
Who's Online
3 registered (Bart, Hockeydad, Sophie H.), 51 Guests and 8 Spiders online.
Key: Admin, Global Mod, Mod
Forum Stats
9744 Members
23 Forums
15558 Topics
176665 Posts

Max Online: 141 @ 05/15/13 10:09 AM
Top Posters
davidcpa 8037
ChristineB 7942
EzJim 5260
Brian Hill 4637
Cheryld 4603
April
M Tu W Th F Sa Su
1 2 3 4 5 6
7 8 9 10 11 12 13
14 15 16 17 18 19 20
21 22 23 24 25 26 27
28 29 30
Newest Members
nueclear, Trinity, marypro, Heike, martie_2014
9743 Registered Users