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#146873 - 03/07/12 02:25 AM Radiation worries. In need of some major advice  
Joined: Feb 2012
Posts: 117
John of arc Offline
Senior Member (100+ posts)
John of arc  Offline
Senior Member (100+ posts)

Joined: Feb 2012
Posts: 117
New York
So I'm post op, having a very small part of my tongue and my lymph nodes removed on that side. It's been less than a month aftermy surgery and today I found out my doctor/surgeon wants me to pursue radiation. I haven't gone to the consultation yet but I am terrified. Also they removed all my stage one cancer and my lymph nodes came back completely negative.
I can't really seem to find a clear idea of risks so I was wondering if you guys could share your experiences with me.
I worried about having permenantely dry mouth and losing taste.
They said its preemptive and more or less an insurance policy for it not to come back and that it's ultimately my choice and I just want as much information as I can get before I make a decision.
It's just devastating that I just started to get back to normal and might lose it all before I get it all back.


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
#146876 - 03/07/12 03:10 AM Re: Radiation worries. In need of some major advice [Re: John of arc]  
Joined: Jun 2007
Posts: 9,747
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,747
PA
I replied to this on your other post.

This might help. Its from the main OCF pages.
Main OCF pages Radiation


Christine
SCC 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 smile
#146888 - 03/07/12 01:43 PM Re: Radiation worries. In need of some major advice [Re: John of arc]  
Joined: Mar 2008
Posts: 3,082
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)
Charm2017  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Alexandria VA
John

My advice is to get the radiation because the major risk of radiation is not getting it at all and then having those microscopic cells left over from the surgery bring the cancer back. This risk of not having radiation more than outweighs any possible complications. Otherwise you will never forgive yourself if the cancer does come back.
Use the insurance analogy: you always insure what you can not afford to lose: your house and your life. Trust me, some dry mouth issues and potential taste issues (both of which often and regularly resolve with time for many here) would be the very least of your worries if the cancer comes back.
I know you are emotionally overwhelmed here (okay, I don't know that- I'm just remembering that I was when I was facing a similar choice to risk getting a second round of radiation past the "maximum"), but having to sip water and finding some things bland is most definitely does not amount to "lose it all" in my book. That will be if you don't get the radiation and it comes back.
I wanted to make sure you have a clear idea of the real risk: joining the recurrence club here
Charm

Last edited by Charm2017; 03/07/12 01:43 PM. Reason: toned it down

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
#146898 - 03/07/12 04:59 PM Re: Radiation worries. In need of some major advice [Re: Charm2017]  
Joined: Jul 2009
Posts: 1,374
David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,374
Los Angeles
John, I second Charm, who has been around more blocks with this stuff than any of us.

My docs never left any room for doubt about rads after my neck dissection. They said it was essential to making sure that any microscopic cells were killed dead dead dead. I trusted them, and although it was tough, at the end of it my RO pronounced the loveliest words I've ever heard in my life: "You're cured."

Also: contemporary radiation, i.e. IMRT or even more modern modalities, is better and better at sparing healthy tissue. Mine was standard IMRT, and although I had a year or so of a very dry mouth, my salivary function did indeed finally come back to a degree that surprised me. I'd say 70%, just guessing. As long as I make sure I have a glass of water handy at mealtimes, I'm ok.

My taste was certainly affected, but long term I don't think the radiation was responsible for those changes (had a nerve or two nicked during surgery resulting in permanent tongue numbness, so that's what's killing part of my taste).

I'm not by any means suggesting that RT is easy. But the alternative CAN be worse. The insurance analogy is just about right.

Keep us in the loop, hey?


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 8 years all clear in 6/17
#146901 - 03/07/12 06:14 PM Re: Radiation worries. In need of some major advice [Re: David2]  
Joined: Feb 2012
Posts: 26
mick Offline
Contributing Member (25+ posts)
mick  Offline
Contributing Member (25+ posts)

Joined: Feb 2012
Posts: 26
boston,ma
i lost half of my saliva glands,radiation effects are manageable. i would encourage you to go through it. my dry mouth has become manageable, with a cooler of water in my truck at all times. dry mouth is worse in hot weather when doing physical activities, but as you progress in recovery you can do more. i had dry mouth "attacks" and found staying hydrated before you feel thirst is a big help


after 3 sarcma flr mouth,fially removed, reconstruct from thigh muscle. 1/2 saliva glands removed, plus more glands than i can remember
#146912 - 03/08/12 12:03 AM Re: Radiation worries. In need of some major advice [Re: mick]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
Add me to the list! I agree with everyone else! I sent you a longer response in your first post!


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
#146937 - 03/08/12 02:24 PM Re: Radiation worries. In need of some major advice [Re: Cheryld]  
Joined: Mar 2012
Posts: 1
Jodyallen78 Offline
Member
Jodyallen78  Offline
Member

Joined: Mar 2012
Posts: 1
Missouri
My mother is facing the same decisions. She was diagnosed with Stage One Oral cancer in November. She had a spot removed from her mouth. Now that it has started to heal we are facing the decision of the neck disection. and radiation. She has decided to to get the surgery next week. I came here to read what people have to say and maybe learn more.. We are so scared.

#146939 - 03/08/12 02:40 PM Re: Radiation worries. In need of some major advice [Re: Jodyallen78]  
Joined: Jun 2007
Posts: 9,747
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,747
PA
Jodyallen, welcome! There is alot of info on the main pages also. When you are ready to post make a post under Introduce Yourself and we will be able to help you too. Best wishes with these difficult decisions.


Christine
SCC 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 smile
#146942 - 03/08/12 03:54 PM Re: Radiation worries. In need of some major advice [Re: ChristineB]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
Hey Jody - welcome I know you're scared... Cancer is a terrifying word... The one thing I do have to say is do what you can to stop it now - people some times make the mistake of thinking - oh it's only stage one do the minimum because we caught it early. Realistically, it's cancer - staging doesn't matter. Whatever they offer you to fight it, clarify, make sure it's within the NCCN guidelines, and educate yourself, then decide... The worst thing is facing a recurrence and thinking - I should have.... 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
#147013 - 03/10/12 03:07 PM Re: Radiation worries. In need of some major advice [Re: seattlepaul]  
Joined: Mar 2008
Posts: 3,082
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)
Charm2017  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Alexandria VA
Paul

Isn't it Time to update your signature line where you indicate a score of 2 for you and zero for the cancer? With 3 recurrences and the original bout, shouldn't it be 4 for you and zero for the cancer? I didn't count Dec 2012 because I can't imagine that in the beginning of March you know the cancer has come back and you would wait until December.
What treatments did you get for 4 bouts of cancer? I thought I was the radiation champ here with 97 GYs , so when you update your signature, give us some hints on how you beat cancer 4 times running. I read all your prior posts as well as the ones you put up today but did not see any details of the 4 TX, just kudos to caregivers and nice advice on dealing with life.
Charm.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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