Previous Thread
Next Thread
Print Thread
#145782 02-13-2012 02:19 PM
Joined: Feb 2012
Posts: 2
Liz23 Offline OP
Member
OP Offline
Member

Joined: Feb 2012
Posts: 2
My name is Liz. I have some questions about my mom.
She was diagnosed last May 2011 with a squamous cell cancer in her mouth. It was removed unbeknownst to me. My partner and I had a trip to France planned and she didn't want us to cancel it because of her. I guess it was in the back of her mouth, I'm not really even sure.
Recently they found a 'mass' in her lymph nodes on the left side of her neck so she went in and had them all removed on that side.
She came through that surgery pretty well. She's a tough lady, she has 3 dogs and was working at a dog wash in San Diego till this came up. Now she's taking it easy and healing but wants to get back to work soon.
In May 2005 she was diagnosed with bile duct cancer aka pancreatic cancer and underwent the Whipple Procedure.
All these years later she's still motoring along.
Anyway, The doctor told her they are going to do 15 weeks of radiation five days a week. Isn't that a little excessive for a cancer that was only found in one node?? She didn't even get that for her pancreatic cancer! I'm in Los Angeles so I'm a couple hours away and I spoke to one doctor by phone and his answer was to make sure they get it all. I thought they got it all by removing the nodes, biopsying them and not finding anything.
Any information or advice would be greatly appreciated as getting information from a Google search is ridiculous.
Thank you,
Liz
p.s. what's a 'spider'?

Last edited by Liz23; 02-13-2012 02:22 PM. Reason: wording change
Liz23 #145785 02-13-2012 02:38 PM
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
A spider is a something that searches the internet for words or phrases.

I would suggest to get your mother to a large cancer center. Normally radiation is given for 5 - 8 weeks. Ive never seen anyone do 15 weeks of rads. I have seen members go thru radiation treatments twice but not without some time between them. There are specific guidelines that your mothers doctors should be going by.

Check out these links for help...
MCI cancer centers

NCCN guidelines

Last edited by ChristineB; 02-13-2012 02:39 PM.

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
ChristineB #145786 02-13-2012 03:21 PM
Joined: Feb 2012
Posts: 2
Liz23 Offline OP
Member
OP Offline
Member

Joined: Feb 2012
Posts: 2
Thanks Christine, she's with Kaiser so she's limited as to where she can go.

Liz23 #145797 02-13-2012 05:49 PM
Joined: Oct 2011
Posts: 805
KP5 Offline
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Oct 2011
Posts: 805
Kevin had 60 radiation tx. It was 6 weeks, but twice a day. It was very hard. Very hard. I can't imagine 75 rads. They hit him hard too, said the same thing.
Best of luck, but be prepared. The outside radiation burns are even really bad. Kevin's was the entire side of his neck from his Adam's apple to the middle of the back of his neck.
I'm not saying any of this to instill fear and I don't mean to be negative, but Kevin and I went into this with blinders on and were not prepared for the last week and the first 2-3 weeks after tx. We did finally get advice on here so realized what he was going through was normal. And remember, that was at 60 rads. Many people don't get higher than 45. 75???? Maybe they are giving some time off in between. Maybe it won't be 75. I would question that.
I may have missed this, but are they doing any chemo at the same time? At least Erbitux?
Please stay in touch with us!!
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
KP5 #145835 02-14-2012 07:03 AM
Joined: Jul 2011
Posts: 945
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2011
Posts: 945
Liz,
my husband also has Kaiser, and received excellent out of system, had a tumor board, etc. Reference the NCCN Guildlines on this site, find the appropriate one, and ask your questions again. Also, there will be a Kaiser document describing coverage and it will reference second opinion protocols. Your mom may have the document at home.


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Maria #145917 02-15-2012 06:46 AM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Hi there - it does seem excessive to me as with what everyone here said its usually 6-8 weeks. I would find out the details on the cancer - staging and type location and differentiation and ask the dr why so much. He likely will have a good reason, but if not get a second opinion. Also chemo should be a part of this regime as well. Good luck... And take care and your mom sounds like a strong woman.


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

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
amndcllns01, Jina, VintageMel, rahul320, Sean916
13,104 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,927
Members13,104
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5