Support groups for DCIS??

I am 3 months out-lumpectomy, no rads or tamox. Eating well, working out, loving every day as well. No support groups in my area either, at least not "in person" groups. But if an online support group were available, would you be interested in "attending"? -A group where you could hear other patients' stories, gather risk and treatment option info easily, and find real-time encouragement and support for the daily fight?
-Perhaps a flagship site for a worldwide "DCIS Foundation" interested in promoting prevention and patient education?  

Hello Pamela, and welcome to BCO!

I am not able to help you with a support group in your area because I am in Australia, but I did want to touch base and say Hi!

It saddens me to see these posts from women who are being dismissed the way you are, because of their Dx. I haven't felt that here, and have found a wonderful group that meets once a month.

We are a group of very mixed women, both in ages and Dx, but we support each other, no matter what the Dx. I hope you can find a group, because it certainly does fill a void after surgery and treatment.

Unfortunately, there are going to be growing numbers of us, with the DCIS Dx because of the new imaging machines available. That was my scenario, mine was most probably there, but not visible when I had my last analogue mammo. My good fortune was to be checked the next time by a new elite Digital machine. I could not be more grateful because at grade 3 DCIS it needed to be found. There is no doubt that while waiting  for answers from Mammograms to Biopsies, to meetings with our team for treatment and surgery everyone, irrespective of final Pathology, is in exactly the same situation. We all feel the same abject fear, and question our own mortality.  It isn't till the Final Pathology that we become, for want of a better description, "In LImbo"! or different from our Sisters who require further treatments.

To then be dismissed after all that fear, surgery, and treatment is just so wrong, and why? Because our Pathology gave us a reprieve from an "Invasive Component".  I believe it is purely, "Timing" that sets us apart.

For everyone who is on this journey, who has been Dx with DCIS, who have undergone surgery and Rads, or like me, a Mx, I am sorry you have had to experience this. I appreciate that our experiences can be, and are different, but we are forever changed because of this. No one can minimise that.

I totally agree with your observation Pamela, I have learned life lessons from this Dx too. I have felt a shift, and see things a little clearer, a little sharper. It certainly hasn't all been a negative experience.

I hope you can find a non judgmental group to be part of, or maybe reach out and start your own group. I have found, support for all, is a wonderful thing, and the fact that you are willing to reach out to people in the same situation as you, or indeed much worse off, should never be minimised or dissuaded.

I wish you all the very best.......Take care!

Hi PamelaK, I had the same experience as you with a friend of mine.  She's a bc survivor of IBC and triple negative bc (other breast). She was very supportive of me when I went through the surgeries and radiation, but she described my situation as almost a "condition."  She also said that women with Stage I and up were "ill." whereas my situation was kind of preventive.  At the same time, she did show a lot of caring toward me and recognition that it was difficult for me.  As for the issue of attending a support group with a diagnosis of DCIS, my friend told me this story. She attended a support group in NYC under "Gilda's Club."  All of the individuals in the group were Stage IV (although she may have been Stage IIIb).  Anyway, one day a new person attended the session and described how her life had changed after her diagnosis and how stressful it was, etc.  My friend said that they all rallied around her until she blurted out that her diagnosis was DCIS.  After that point, they felt as though they had been taken advantage of.  I have to say that I might even understand that.  Other than my friend, none of the other women survived. After hearing that story, I knew that I would never attend a bc support group unless the women had a DCIS dx and that's why I stick with bc.org.

Thank you ladies for your warm welcome and sharing your experiences. 

It's completely true - we are FOREVER changed by our diagnosis and the paths we've walked because of it.  No one should ever diminish or try to invalidate our feelings or experiences.  I've even had an older lady outside of the treatment center ask me my status (which I thought was kinda impolite in the nosey sense) and when I told her she waved her hand at me and said "oh, that's nothing at all" - I felt like pulling up my shirt and saying yeah, this is nothing!  Ha!

We are lucky and I know that each time I pass the chemotherapy room and silenty give out prayers for those inside.  And like Ariom mentioned earlier, it is all about TIMING - timing and the luck of having found it early.  Heck, most of life is about timing anyway right?    I get that others struggle with far worse than I do and I appreciate and respect that but no matter what I would never dismiss someone's feelings, status, position about anything.

And you're absolutely right, there are days that I think that this diagnosis is a blessing.  There are many life lessons that I've learned so far and I'm grateful for those.  It makes me even more appreciative of every day, moment, laughs and loved ones.  I don't take anything for granted anymore and I've truly learned who my real friends are (and who aren't) as well as been touched by the kindness of complete strangers.  I have two days left with my rads and am starting to feel like it's a bittersweet ending - I love the techs that have been treating me and actually look forward to their smiling faces each morning.  They are part of my journey and I will never forget them.

I think your idea about starting my own DCIS support group may be just what I'll do.  I'm going to look into it some more and see what I can find.

I'm glad that I found this board as I feel like I'm not nearly as alone as I thought I was!

OldOakTree,

I have just realised that a post I wrote to you has not made it to this thread. It must be in cyberspace somewhere:)

What I said, was that I totally empathise with you.

I wonder if you could approach the Doctor, or his receptionist and ask if they could pass your number, or perhaps if you could put together a short note about wanting to meet others with the same Dx, that they could address and pass on to others who attend that practice. There is always the local newspaper, or even notice boards for free ads. I am sure there are others just like us, wanting to make contact, but unable to find a way.

I wish you all the best!

Mulder...

That is awesome that you are feeling so well. I'm going for the rads but totally understand why you didn't. My medical oncologist wants me to try a chemo drug for clincial trial..I don't want to be a guinea pig. I wanted to stay away from chemo if possible.

Hi Pamela! You're so welcome!

I think we would do well in the same group as we have identical feelings on this! I too, am strangely proud of my scars, and see them as "My life's roadmap!" I have been very surprised by the positive aspects of this journey, so far.

I do hope this group proves to be right for you, it is a very comfortable feeling to belong to a group of like minded women. 

My group is very diverse. We have a couple of DCIS, but the rest are all different Dx. We have 15 ladies, at the moment, a couple of whom are stage lV, some others still undergoing treatment, one who has a recurrence after 28 years.

We seem to get a new member every month or two. Interestingly, we have only one member who has reconstructed after a Mx, and only one member who chose a Lumpectomy over Mx. It's an interesting mix.

I hope you find an interesting group! I'd love to hear your experience! Take care!

OldOakTree,

I had a very similar experience when I finally got up the guts to go to a breast cancer support group.  It made me feel guilty for the feelings I had about having DCIS.  I know it's not as bad as other breast cancers, but it's the first one I've had in my life (in my 40s).

Couldn't find anyone that was premenopausal, early 40's with DCIS.  Very lonely feeling. Trying to find more research for premenopausal women with DCIS.