Support groups for DCIS??
It's been 4 years since I've been diagnosed, yet I still need to find and talk with others who have DCIS only. I live in constant fear of having more calcifications, finding a lump, finding a hot spot on the MRI, every ache to me signifies that I am that 1% that goes from stage 0 to stage 4. I can't just "get on with my life" like my doctor tells me to. I think I could handle this better if I could find others who are in the same boat (that is who have DCIS, only DCIS and haven't gone on to another stage) but I have only been able to find one other person in my area who in this position. My doctor tells me her practice has several patients with DCIS only and she would give me the names of them so we could get together but was never able to actually produce this list.
Any thoughts on DCIS support groups?.
Comments
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Great idea. I had DCIS x 2 in rt. breast,, one margin within 1mm. Then I had MRI which was highly suspicious for invasive CA, one in each breast. Ended up having dbl mastectomy with expanders as I didn't want to have to worry about it any more. It was a very difficult decision, DCIS is grade 0, however, the fear and wait for further is always there. Best wishes to you. I hope this site helps, it's been great for me.
Jeanne -
My mom (6 yr survivor) took me with her to the local BC support group 2 years ago with a dx of pre-cancerious ADH and they took me in with open arms. I told them that I was not a survivor but they insisted that since I had a pre-cancerious condition I was still part of the group. Every group is different but I have felt comfortable with the group and because of the relationships I have made with the Arm-n-arm group, when my last biopsy April 07 showed DCIS grade 0, they helped me make the decision for a bi-lat and recon with expanders. several even showed me their bi-lat scar and reconstruction results.
Sheila -
Just like Sheila, I was warmly welcomed by the BC support group @ my church! No one cares that I was stage 0. I went to the first meeting, waiting for pathology second opinions and overwhelmed by the choices I was facing. Emotionally, I was a mess! The women there helped me through things, and showed me the light @ the end of the tunnel. I even met a woman with my same surgeon, and PS, and she reassured me immensely! We have a mix - women from 40-80, a 30-year survivor, someone with stage 4 and everything in-between. We usually have a theme for each meeting - humor, inspiration, spirirtuality etc... and we talk about other things besides cancer (I've seen *lots* of pictures of grandchildren!)
I think a good support group should not focus on the different distinctions, but support everyone on this journey - wherever they are....
JMO,
Mary -
I am fortunate enough to have DCIS support in my area. I only go to this one. We did have one lady last time who came to us after being at other BC group and she was so scared after that. She had a tough time dealing with DCIS daignosis and seeing wome in more advanced stages scared her even more. But she did enjoy support she got there as well.
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I am in the same boat as you; had DCIS 4 years ago and I've been doing fine. It's quite common for DCIS not to come back. Of course at the support groups, we hear about the problem cases.
Catherine -
I don't know if there is any DCIS support groups in my area, but I would be interested in a discussion group here. I was diagnosed with DCIS about a year and a half ago and went through lumpectomy and radiation. I went through a scare with vaginal bleeding (I was a year menopausal I thought) I had a negative endometrial biopsy
but did not start tamoxifin. I saw my oncologist today and she did not really encourage me to start tamoxifin now. I was coming in to see her to try to decide whether to start it or not. I'm having a mamogram next month and seeing my surgeon a week later as part of a regular follow-up. I'm interested in finding out why women chose to have mastectomy's instead of lumpectomy's and what side-effects they have had from tamoxifin. -
Thank you for the input ladies. I had a very difficult time when I was initially diagnosed; I think it would have been much easier had I been able to talk to others in the same boat. The support group I went to, unfortunately, made me feel worse (not that anyone purposely said or did anything to make me feel that way, it was just a difficult time in my life). I have been wanting to start a DCIS group for 3 years but it won't do me much good if I am the only one there LOL. Even my own doctor can't give me the names of anyone. There are a couple of BC organizations in my area - very active ones it seems. I could contact them to get their ideas about this, though I think the general feeling is that it is "just DCIS" and who needs support for that. That is why I am wondering if anyone here is a member of a group such as this or if you would go if you had the opportunity. If you all say don't bother with it, it isn't needed, well then I probably won't do anything about it but if you say you would go to one if you have the opportunity then I might pursue it with more energy.
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I am fortunate enough to have DCIS support in my area. I only go to this one. We did have one lady last time who came to us after being at other BC group and she was so scared after that. She had a tough time dealing with DCIS daignosis and seeing wome in more advanced stages scared her even more. But she did enjoy support she got there as well.
Inna, Can you tell me a little about your group - how often do you meet? how many attend? who sponsors it? The lady you mention sounds like me! I think you have said before you are in California, right? -
We meet every two weeks. It's moderated by a therapist who actually had DCIS herself.
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I would like a support group for women with DCIS & early invasive cancer (which can also be treated solely with surgery & radiation).
Most support groups in Seattle meet during the workday. The only one that is convenient for me has a majority of people who are undergoing chemo. To be honest, it makes me uncomfortable to be in the room when people are discussing Taxol & Adriamycin, since I dodged that bullet & don't want to entertain the possibility of it happening to me. It's weird when every person in my support group has had an initial cancer event & then a recurrence - it feels like I am completely in denial when I say "but I have a good chance of this cancer never coming back." I leave wondering, Am I naive & misinformed to think that I won't recur?
Also, I vividly recall the night that I discussed my thoughts about the fact that possibly I only have 10 years to live - there's no evidence for that, but it's helped me to clarify my thinking to imagine that I might be killed by this cancer. Shortly after I shared, another person started crying and said "I wish I HAD 10 years to live!" This person was given a prognosis of 2 years, and the 2 year anniversary was coming up. I felt like a dork, and I wished I could have taken back my words, but the fact is that some people can be treated and expect a normal lifespan. I'm looking for more women who are in my situation. -
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I'm interested in finding out why women chose to have mastectomy's instead of lumpectomy's and what side-effects they have had from tamoxifin.
After my 2nd dx of ADH last September, my doctor suggested the bi-lat as a preventive measure. I was dx with DCIS this April and I chose bi-lat mast for my treatment because of the previous dx of ADH in two years, once in each side. My DCIS was not invasive and I don't have to do chemo or rads.
My dr put me on tamox last September. I had just turned 45, the side effects that I had were light or even skipped periods, mood swings, and hot flashes/night sweats. After my surgery he said that there was no reason for me to continue to take tamox, that was June 1 and I am still having the night sweats but my period has returned to normal.
Sheila -
I am diagnosed with DCIS - stage 0. I certainly could use all the help and support. I am currently undergoing MultiPlane Brachy Therapy. It is always good to know what the others have done for DCIS.
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What is MultiPlane Brachy Therapy?
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MultiPlane Brachy Therapy is similar to Mammosite;in this case angel hair type catheters are inserted into the area where the tumor was and and poppy sized seeds of radiation are sent through by the machine.(angel hair sized referring to pasta)This is done 2xday for 5 days. It sure beats 6.5 weeks of radiation treatments. Not all qualify. Check with your doctor. I would say it is worth it.
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Thanks for the explanation on brachy therapy. I will investigate my options. I think I read somewhere that mammosite is not considered approriate for post-menopause or over a certain age, not sure. I am post meno and 55 but will keep these options in mind and be sure to ask.
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I also had DCIS and understand your need for a same peer support group. Where abouts do you live Oak and have you had any luck finding one?
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Mammosite is appropriate for those in their 50s--starting at age 45whether post menopausal or not. The younger patients are not candidates, however, some facilities choose their own age criteria.
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Ginger- I think I read the criteria for a NIH study on mammosite stating that they are not accepting candidates over 50 after 12/06 but that's just for the study. I am sure you are right about different criteria in different places. It has totally amazed me at how many differnt ways there seems to be to treat the same disease
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hi,im scared
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Hi Janet,
I'm sorry that you're scared...where are you in the process? Have you been diagnosed? had surgery? Tell us a little more (and more about what's scaring you) and maybe we can help.
You may want to start a new thread so that more people will see your post. (At the top of the list of topics where you want to post, you'll find a rectangle that says "post". If you click that one you can start a new thread on that board.)
Hope to see you back soon!
LisaAlissa -
Kinda the same here. My DCIS diagnosis was almost five years ago. I went to a couple of BrCa support group meetings, but the women had more problems than I did. (I was the only DCIS diagnosis.) After I had gone to two meetings, there weren't any for three weeks due to the Christmas holidays. I never went back. I kind of remember some things I heard that could have scared me. Things I didn't need to hear and didn't need to be concerned about. I could have been interested in a DCIS support group. Or maybe not. For about two years after diagnosis, I was worried and anxious -- just waiting for "the other shoe to drop". It didn't and I don't expect it to. (I have had two more biopsies -- both with benign results.) So now almost five years later -- I AM FINE.
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You go Mary!!! Happy to hear about good results. I'm new to this whole thing and it's encouraging to hear that the anxiety is normal.
Keep up the good work!
Marcella -
Marcella, the anxiety is the worst part of it all. At least it was for me. As I said, took about two years to get over it. I was not one of those that found knowledge to be power. I didn't want to know more than necessary. Too much knowledge scared me. Looking back -- all my physical treatments were easy. Clear margins first go on lumpectomy. Virtually no problems with radiation. Only mild side effects from Tamoxifen.
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I also had DCIS and understand your need for a same peer support group. Where abouts do you live Oak and have you had any luck finding one?
Kali I live in NYS and haven't had any luck finding a DCIS support group. There aren't any in my area which is why I want to start one. Are you a part of one? I only know of one other woman in this area who has DCIS so I don't know how it would go. It won't help much if I am the only one there. I think one thing that makes me hesitate is the fact that it seems so many woman who have DCIS go on to stage 1 or further. I find that very disheartening. Will people keep thinking "who's next to leave to join the real BC support group?" I know when I was first diagnosed I really could have used the suppport and now, 4 years later, I still can. -
Hi again, No, Im not part of a support group and not even sure how to go about finding one, but I think it would be a great idea! I am suprised you couldn't find one in NY. Good luck with starting one.
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I too was diagnosed with DCIS about 3 months ago. I had 2 surgeries to get the margins and now I'm heading to see about radiation therapy today infact. So I'm pretty new to this and what is weighing on my mind more heavily than most things is the medication. I am 56 and it has been suggested that I take Letrozole. I just don't want to do it. I read all of the possible side effects and for me even if I don't get them I will worry every second that I'm going to. Has anyone been diagnosed with DCIS and had radiation therapy but chosen not to take drugs afterwards?
It has also been suggested that I join a support group in our area but I am likely to be the only one with DCIS.
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Hi Sapsam,
This thread is very, very old (2007). You might want to go on another thread (or start one) regarding taking hormonal therapy and/or support groups.
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Hi, Sapsam - I had a partial mastectomy followed by radiation for ER+ DCIS in 2009 at the age of 48. Although tamoxifen was strongly recommended by my BS, RO, and MO, I chose not to take it because I felt the benefit did not outweigh the risks for me. Around the time of diagnosis, I began to have episodes of racing heartbeat and palpitations that turned out to be atrial fibrillation. (So I had to add a cardiologist to my growing list of specialists.) A-fib carries a stroke risk and I didn't want to add to that risk by taking tamoxifen. I am four years out now and have had a couple of scares and one biopsy (benign fat necrosis), but otherwise doing fine. I'm just hoping I won't one day regret my choice to decline tamoxifen.
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Hello all, great idea for a thread!
I was Dx with DCIS stage 0 grade 2/3 last October. I am in Australia, so inviting you all along to my BC group would be silly! LOL
I was told about the group by the local Breast Nurse, and was invited to a meeting just before my surgery in December. I didn't want to go, but decided they had offered the invitation so I should make the effort. I am so glad I did. We meet once a month, and although there are about 14 in the group, I think only one other had DCIS, and she is the one who started the group. She had a UMx as I did, to avoid Rads, providing nothing else was found at final pathology, and neither of us take Tamox.
We are a group of women with many different Dx, and stages, but I have to say that unless someone has a specific thing they want to discuss, BC is not high on the list of subjects that we talk about.
I have been "caretaker" of the group since our leader has been away for the Winter here. We have had some great speakers come to address any needs we have, Like a Lymphedema Specialist, a Breast Nurse, a Rep from Amoena to show new products, a Podiatrist for footcare, and a Massage Therapist and Kinesiologist to help with stress and sleep issues.
I live in a Coastal Town, and our local newspaper runs an ad every month free of charge. It is just inviting anyone who has had a BC Dx and their friends and family to meet with others in the same situation for support and a cup of tea or coffee. If there is a speaker that month, their name and the subject of their talk is listed.
We charge a gold coin donation which in our money is a $1 or $2.
We have a room at the community centre donated for our use, and through small fundraising events we have raised money for the occasional outing, or for helping anyone who may be doing it tough during treatment etc.
I must say, I haven't come across any negative talk about having DCIS, except for a former work collegue who also had DCIS. She asked me what reconstruction I was having. When I told her I had decided not to go down that road she floored me by asking me "How could I bear to look at myself!" I was gobsmacked, and told her that I had no issue whatsoever with the way I look. Still don't!
I had my follow up appointment with my Surgeon a couple of weeks ago, and my first mammo for the remaining side yesterday. All is looking good, so that's the first hurdle over.
Take care everyone, and please don't buy into the negativity of some people and their interpretation of DCIS, we all know what it is!
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I was diagnosed in September 2012 and had a partial masectomy in Dec. 2012. I had a wonderful breast care surgeon who performed an incredible job. I am a size D and you can't even tell I had surgery unless I hold up my arm to see where she took two lymph nodes (which were clear BTW). My incision is under my breast and can't be seen. She did a procedure that most general surgeons do not do. She somehow made flaps and filled in the hole where she took out 9 cm x 6 cm x 4 cm of tissue. The cancer was 3mm so she gave me incredible clean margins. You can feel that my breast is more empty but it doesn't look any different from my rt one. I chose not to have radiation for many reasons but that is a long story but I would make the same decision again. However, I would NEVER tell anyone else that their decision to have radiation is wrong. It is a VERY personal decision. I also refused the Tamoxifen. It has been 9 months and I feel really good. It changed my life. I eat as clean as possible, take vitamin supplements, and workout 5x a week to help reduce the hormones in my body. I take every day as a blessing.
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