#15978 07-13-2004 02:29 AM | Joined: Jul 2004 Posts: 8 Member | OP  Member
Joined: Jul 2004 Posts: 8 | Hi Everyone,
As my name suggests I live in Denver, but my sister in Savannah has cancer in her tongue. Her first surgery was in 1976 and she was cancer free for years. In 1997 it came back and she has had three surgeries plus 2 series of radiation since then. We just got word that they want to do another surgery on her tongue (as well as reconstructive surgery), which will probably leave her without speech. We also believe she needs a PEG tube very soon, although the ENT doc hasn't suggested it yet.
Anyway, I'm in Savannah and trying to help make decisions. There is serious consideration for not having the surgery as she is 70 and is much more concerned about "quality of life". There are touch decisions to be made and it's hard because she is such a sweet considerate loving sister.
So, that's the story. We have so enjoyed reading many of your stories as they are inspiring and comforting. At 70 my sis says she doesn't know if she's up to learning about a computer and internet, so I'll probably be the only one conversing, and I'm so glad I stumbled on to this chat room (I thought chat rooms were just for dating!). I'll be talking with lots of you soon!
Janis (DenverSis)
DenverSis
Sister has SCC on tongue- surgeries in 1979, 1997, 2002, 2003- radiation 2002 & 2003- 7/04 70 yr old sister opted for hospice & palitive care- 8/22/04 I moved to GA from Denver to help & love.
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#15979 07-13-2004 03:48 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi Janis
Glad you found us, sorry your sister has had a reoccurance, and I'm sorry that such hard choices are having to be made, your sister sounds a brave lady to have come so far along this rocky road, and she's lucky to have such a caring sister.. just ensure that you have asked every question you can thing of, write them down as they come to mind, this decision has got to be made right the first time.. use the search on this forum to help if you can.. Prayers to you both
Sunshine... love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#15980 07-13-2004 06:03 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Hey Janis,
Welcome to the board. As you have time, try and read all the information you can here about the disease and everything related. Brian (founder) has done such an awesome job putting all this information out here for us. I would suggest a PEG tube. My husband had it for 5 months and wasn't able to eat or drink anything for most of that time, and the nutrition was easy and so necessary while he was taking treatments. He still has a lot of trouble eating even though he got the PEG out about a month ago. He still has no taste buds and some trouble choking, so he relies on BoostPlus to help. I know your sister must be so grateful for your love and concern.
Take care and you and your sister will be in my prayers!
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#15981 07-13-2004 06:46 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Janis,
An official welcome to you! I have seen some posts from you already but I guess this is the real introduction. It is good to have you here but said that you have to seek us out. I am really sorry your sister (and you, of course) have to face such a difficult series of decisions right now.
From both sides of the question, there is no easy answer. From my perspective, your sister is not at any special risk because of age but I certainly can understand her desire for quality of life during the golden years. It is supposed to be a time to sit back and take it easy after years of hard work. I can't imagine what it would be like going through the surgery at any age. I was fortunate in that I have only had radiation/chemo (so far).
Your sister is such a strong lady to have been through all she has. From your post it sounds like she is probably just worn down from the ongoing treatment since 1997. It also sounds like she has decided the course of action for her. Whatever her decision, she is lucky to have the love of her sister with her right now especially.
I pray for God to give the medical team the wisdom to determine the best options available and to guide all of you to the best possible decision for your sister. I also pray for comfort and peace for your sister and you through this difficult time.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#15982 07-13-2004 01:52 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Welcome Janis,
The role you have undertaken is about as tough as it gets. It's so diffucult to see someone you love suffer. Than the decisions you have to make
about quality of life issues are tough.
Your sister is lucky to have you there for her. I hope whatever decision she makes about treatment work out for the both of you.
Please keep us posted on how she is doing.
Dan
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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