real live in-the-flesh support groups

gymnut

hi all,

i had my radiation planning session friday, have to go back this friday & then start treatment on monday.  i'm a bit freaked out some of the time, for a lot of reasons... including the whole taking-care-of-everyone-else-and-minimizing-what-i'm-going-through thing. 

i'm trying to get information about support groups and was wondering about other people's experiences.  more specifically, i'm in massachusetts, on the north shore and would really love to find a dcis support group.  today i spoke to the sw at the cancer center where i'm getting treatment.  they're "restructuring" & forming a new breast cancer support group soon.  they didn't used to include dcis or anything "below" stage 2, because they found it soemtimes freaked people out when groups had been more inclusive in the past.  i really think i might benefit from a group, but i dk hw i'd feel in a room full of women with stage 3 or 4 cancer having chemo and worrying about whether they were going to survive.  i'm not sure it would be good for anyone.

any thoughts?

thanks & take care. 

ferbevi2001

Hi gymnut

 I'm in the north shore area of MA too,  and I was thinking it would be a good idea to find a support group for woman who  have been diagnosed with DCIS.  Do you know more people in this area?

Talk to you soon,

Fernanda

sweatyspice

There's a DCIS group in Manhattan (NYC) which meets monthly.  Not terribly convenient for you, but if you ever wanted to take a road trip .....it's 6:00 - 7:30pm, usually on a Wednesday night, at an office in Times Square.  The sponsoring nonprofit is called SHARE.

gymnut

thanks fernanda & sweatyspice,

i hope to hear from more people as well.

to fernanda, i know there are a number of people in the "greater boston" area who have been on a number of the dcis threads, so maybe if there aren't any existing support groups, a bunch of us could look into forming one. 

to sweatyspice, thanks for the info.  are you in ny? have you gone to the group?

i've also been wondering about other people's experiences w/ support groups if they were or weren't dcis specific.

gotta get back to work but will stay in touch.

take care .

ferbevi2001

Hi Gymnut:

I think it would be a great idea  a support group or may be just  getting  together and share experiences. I live in Newburyport and have two girls  12 and 9 years old.

I hope someone else would like to join the idea.

Take care,

Fernanda

gymnut

hi fernanda,

i think so, too.  i also asked the sw at the cancer center where i'm being treated if she will check w/ her network about dcis support groups in the area.  maybe i'll try to repost at some point w/ something about massachusetts or greater boston area in the suject line if i don't get any other responses, because i think it could be a great idea.  if we can't find a group, maybe starting even a small one or getting together for coffee or tea or something might be worth a shot. 

i'll be receiving my first radiation treatment in a few hours so i'm trying not to be too freaked out and i'll be really glad when it's all done or when i'm done with treatment.  they think they get everything-margins were clear after reexcision, but i guess w/ dcis they can never be 100% sure....

keep in touch & good luck w/ whatever stage you're at.  i'm not nearly as north as you-in salem-and don't have any kids, unless you count my cat Max who apparently thinks we're the same species, though maybe that means he thinks i'm a cat.

take care. 

Jelson

Have you guys thought about just getting together informally? through networking - you might find others in your area. for me it was a close neighbor and someone in someone's yoga class knew someone who had just been diagnosed and  someone's friend walked her dog with someone - I have found a group of 6 women - and we have been meeting for two years. we just happen to be early stage and we meet every month for dinner. We share info about BC related events, activities - three of us are on a dragon boat team - conferences etc. I don't know much about formal support groups run by social workers, I suppose there is more structure and it is more intense and perhaps cathartic - but we have a lovely time and do talk about the stressors in our lives. In any event, if you live close enough, meet up with each other!!!

Julie E

 

gymnut

that's a great idea, actually.  thanks jelson.  i'm also going to try another post on here (and fernanda if you're out there i hope you'll see it) to see if there are more people in the area who might be interested. i'm glad you were able to find something jelson and hope it keeps working for you.  i hope we can find/create something in my area too b/c i think it would be really beneficial.

thanks & take care. 

SuebeeBC

Im not in MA anymore but I grew up in Dedham and my brother is on the North Shore.

Anyway, I think its a great idea.  There is NOTHING in my city at all...I would have to drive an hour in either direction for any kind of support or classes or anything.  I would think there would definitely be something in Boston since there are so many hospitals there.  did you try going on ACS.org and searching for one in the area? 

sweatyspice

Gymnut -

Apologies for not replying earlier. 

Yes, I'm in NYC and have been to support groups that were specific to DCIS and as well as BC in general.  I've also attended some informal get togethers with women from the board with different BC diagnoses.

I've always enjoyed the informal get togethers. The support groups....some nights it seemed worth it and some nights it seemed like a waste of time.  It really depended on the particular night, my mood, my commute, whether or not there was a topic discussed that was important to me, etc.

All in all, while I was going through treatment, this board and all the groups I went to were invaluable.  Now that I'm a little over a year past surgery, I'm not as interested (though I'd still go to the informal get togethers, because that's now more about friendships with some support thrown in.)

All that said, the structured support groups I went to were sort-of-informal, you could attend sessions as you pleased; you didn't have to commit to the group for a period of several weeks or months (Gilda's Club has those, I couldn't make a commitment like that work at the time.) 

Have you investigated Gilda's Clubs near Boston?  The one here hosts all sorts of interesting things, I got a lot out of some of their lectures and mini-discussion/support meetings.

Most of the support groups I attended were through SHARE, which I think is NYC only.  : (

Best of luck in finding or creating something that works for you.  It really helps to be able to discuss doctors, hospitals, different treatment ideas, etc.... 

gymnut

Thanks Suebee & sweatyspice for the suggestions.  I will look on acs (american cancer society i assume) site & also look into gilda's club, too.  iwasn't aware of that & i thought gilda radner had ovarian cancer or uterine cancer, though i could be wrong or that could be completely irrelevant.  i'm in the midst of radiation now & pretty much going out of my mind sometimes & then trying w/ varying degrees of success not to beat myself up for feeling sad or crappy or pissed off sometimes.  i don't want this "thing" taking over my life & i think having a place to put some of that, besides here, might be really helpful.

 thanks again. i'll keep trying...take care.

sweatyspice

Gilda Radner had ovarian cancer, but Gilda's Club is open to anyone with any cancer diagnosis and their offerings are quite varied.

Good luck with rads.  It definitely plays with your mind, your reaction is normal! 

Edited to add:  Aw, crap.  I just checked and there aren't any Gilda's Clubs in Mass - which really surprises me!  OK......in that case.....you should check with the hospitals, a lot of them run support groups and can also arrange for one on one counseling if you feel that would be helpful.  Sometimes there's no charge - depends on the hospital and the program.  Not sure if you'd have to be a patient at that facility to qualify, that also probably varies by program. 

Edited again to add:

I just found this place (they have an affiliation with Gilda's - not sure how it all works)

Cancer Support Community Massachusetts South Shore
Affiliate in Development
273 Hanover Street
Hanover, MA 02339
Phone: 781-829-4823 

Since it's an "affiliate in development" I don't know what's available, but it's worth a phone call.  They might be able to point you in the right direction, if nothing else.

Cancer is such a pain in the butt. 

SuebeeBC

Gymnut - I sent you a private message....check your in box.  Thanks.