Patient / Survivor Header
Topic Options
#147959 - 04/08/12 01:49 PM What is a good site to find support groups?
BuffaloFan Offline
Contributing Member (25+ posts)

Registered: 04/05/12
Posts: 30
Loc: Rochester NY USA
I am looking for a support group in my area and wondering is there a site I can search to find one. I have searched American Caner Society and could not find any in my area.
If no recommendation, any suggestions on starting one? Not just for oral but any cancer.
_________________________
squamous cell carcinomas Stage 2, 1/26/2012. Surgery 2/15/2012 - Finished Chemo 5/18/2012 Finishing Radiation 5/29/2012
So make every minute count-Jump up, jump in and seize the day-And let's make sure that in every single possible way -Today is gonna to be a great day

Top
#147962 - 04/08/12 02:31 PM Re: What is a good site to find support groups? [Re: BuffaloFan]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
Hey Pete!

One of the reasons Brian Hill created OCF is because he was dissatisfied with the support levels out there from other organizations. Following his cancer ordeal he felt he needed more support than the monthly meetings offered by other organizations, often times daily support.

Personally I live in a remote area of Idaho and don't have many options for support groups etc...especially for Head & Neck Cancers, which is why OCF has been such a resource for me. I've been able to connect with other patients and survivors here that I've carried over to Facebook and am able to connect more personally, There is a Facebook thread under the "Friends" forum that has a good list going. What I love about Facebook is not having to leave my house, I have it on my phone so I have almost an instant connection with the people of OCF I trust to give me good support.

I also volunteer locally for cancer support groups etc however I find I'm supporting others rather than myself at those, which is why I prefer OCF. I suggest contacting the local hospitals or cancer centers as they generally have more information on local support groups etc.

Hope that helps my friend!

Eric
_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

Top
#147963 - 04/08/12 03:10 PM Re: What is a good site to find support groups? [Re: EricS]
BuffaloFan Offline
Contributing Member (25+ posts)

Registered: 04/05/12
Posts: 30
Loc: Rochester NY USA
Eric, the reason why I ask is because I like the physical interaction and the web cannot provide that for me. I have hidden way too much on the internet and have lost touch with friends because it.


Fred
_________________________
squamous cell carcinomas Stage 2, 1/26/2012. Surgery 2/15/2012 - Finished Chemo 5/18/2012 Finishing Radiation 5/29/2012
So make every minute count-Jump up, jump in and seize the day-And let's make sure that in every single possible way -Today is gonna to be a great day

Top
#147965 - 04/08/12 03:54 PM Re: What is a good site to find support groups? [Re: BuffaloFan]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
Definitely check with the local hospitals then, I think they will have better information on support groups locally.
_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

Top
#147966 - 04/08/12 04:52 PM Re: What is a good site to find support groups? [Re: EricS]
BuffaloFan Offline
Contributing Member (25+ posts)

Registered: 04/05/12
Posts: 30
Loc: Rochester NY USA
Originally Posted By: EricS
Definitely check with the local hospitals then, I think they will have better information on support groups locally.


I talked to a social worker at the clinic I get treated at and I was told there used to be a group that met but it seems they have stopped meeting.
_________________________
squamous cell carcinomas Stage 2, 1/26/2012. Surgery 2/15/2012 - Finished Chemo 5/18/2012 Finishing Radiation 5/29/2012
So make every minute count-Jump up, jump in and seize the day-And let's make sure that in every single possible way -Today is gonna to be a great day

Top
#147983 - 04/08/12 10:12 PM Re: What is a good site to find support groups? [Re: BuffaloFan]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
Pete

I don't know if this is the group that used to meet but it is still listed as current as of April 8th, 2012 at the Spohnc web site as a head and neck cancer support group
NEW YORK-ROCHESTER
Strong Memorial Hospital
Luellen Resource Center, Patient Res. Ctr.
1st. Thursday: 4:30-6:00 PM
Sandra E. Sabatka, LMSW 585-276-4529
Sandra_Sabatka@URMC.Rochester.edu

Hope this helps.
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

Top
#147989 - 04/09/12 12:41 AM Re: What is a good site to find support groups? [Re: Charm2017]
ZendaT Offline
Senior Member (100+ posts)

Registered: 02/20/05
Posts: 103
Loc: Mesa, Arizona
Pete,

Do check with www.spohnc.org for your nearest support group. I have found that SPOHNC (Support for People with Oral, Head and Neck Cancer) provides practical and emotional face to face support for patients and caregivers.
_________________________
Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.

Top
#148018 - 04/09/12 04:10 PM Re: What is a good site to find support groups? [Re: ZendaT]
Irishgypsie Offline
Contributing Member (25+ posts)

Registered: 05/03/10
Posts: 48
Loc: WNY
Hello BuffaloFan, Wilmont cancer center has a head and neck support group the first Thursday of every month! I myself didn't really find the group very helpful; but it may work for you. One of the reasons why I didn't find the group helpful was that it was mainly a informational group; being a registered nurse myself I was hoping for a open group forum where we could interact with each other and talk about depression, anger, fears of the unknown, etc.! But sounds like this may be what you are looking for!
_________________________
Charles

HPV +16 Right Tonsil SCC with 1 Right lymph node. Tonsillectomy and neck resection.

Got 33 radiation doses via tomo machine (58 gry to back of throat, 65 gry to right neck, and 56 gry to left neck) with 2 cisplatin and one carboplatin due to possible hearing loss.

Top
#149164 - 05/06/12 03:46 AM Re: What is a good site to find support groups? [Re: Irishgypsie]
KenEggman Offline
Contributing Member (25+ posts)

Registered: 04/14/12
Posts: 32
Loc: VA, USA
Fred, I too was looking for a support group. The hospital where I had my surgery did not have a cancer spt group, and I found one in the paper at a nearby hospital. I went last week for the first time (they meet weekly) and was warmly welcomed.
Meeting in person with others certainly has another dimension to therapy. Good luck!!
Ken

_________________________
48YO M, hlthy, xsmkr(quit 14yrs ago), mod drinkr
1 mo sore throat w/neck lump 3/12
SCC tonsil, lym nodes
4/12/12 rad tonslctmy, mets in lymph nodes
5/8 PEG, 5/10 PORT 7/3/12 Last Chemo (Cisplatin)| 7/10/12 Last RAD | 9/6/12 MRI=No New Cancer
BSA Scout Ldr w/strng desire to live & beat cancer

Top
#149187 - 05/06/12 11:11 PM Re: What is a good site to find support groups? [Re: KenEggman]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2597
Loc: TN
The hospital where my son had his treatment had different kinds of "in person" support groups for cancer patients - one of them that I noticed was a "laughter therapy" group. Well, even though he is the type to have great sense of humor, this was one thing he didn't want to go to but he encouraged me to check it out. I didn't - because I thought - how could I laugh about anything without him? A few weeks later, I thought I would go anyway, but the nice lady at the desk said they had cancelled it. Cancelled laughter! That kind of depressed me for a while. I know everyone is different and we all react differently to things and whatever helps is a good thing. So, in addition to checking with local hospitals, you could check "groups.yahoo.com" to see if they had something for cancer survivors, or even start your own group. A friend of my son's met her significant other at a local hiking group.
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




Top


Support OCF


Help OCF

Shop Amazon and Help OCF

Who's Online
1 registered (larry6905), 31 Guests and 6 Spiders online.
Key: Admin, Global Mod, Mod
Forum Stats
10123 Members
23 Forums
16007 Topics
181637 Posts

Max Online: 141 @ 05/15/13 10:09 AM
Top Posters
ChristineB 8410
davidcpa 8309
EzJim 5260
Cheryld 4914
Brian Hill 4677
Newest Members
larry6905, QOL, GingerA, tony_d, Dirtyred
10123 Registered Users
Brag Box