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During treatments, where did you go for support and were you able to find others with Infiltrating Lobular Carcinoma?

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Support Patient Support Infiltrating Lobular Carcinoma (ILC) Emotional Support

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Support X Patient Support X Infiltrating Lobular Carcinoma (ILC) X Emotional Support X

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Answers (1)

regrounding (Survivor (5 - 10 years)) - 07 / 22 / 2011

It's a great question! To address first the issues of having lobular, I'm not sure I ever did find anyone else with it, nor do I think it mattered much since the treatment protocols are similar to those of patients with invasive ductal carcinoma. (Today they are often classified together as Luminal A, Luminal B, and so on anyway.)

As for where I turned, I think the most significant issues for me related to having been diagnosed at a relatively young age. My first concern was helping my son understand what was going on, and that took resources with particular knowledge, that frankly I did not find early enough. Today things are much better in that regard!!

As for my own support...my friends and family stepped up in truly moving and inspiring ways. In addition to a husband who never left my side, I had a tight circle of friends who were there for me each step of the way. That said, sometimes we need people who have "been there" when it comes to cancer...

One of the very best resources I found was the online community at the Young Survival Coalition (http://www.youngsurvival.org/). In addition to being a great place to ask questions (Talk About Health wasn't around!), the women there fully understood the complexity of parenting through cancer, feeling "too young," facing fertility issues, the limited treatment options for pre-menopausal women, building a career through cancer and so on.

Sometimes, after treatment, there is a drop that patients experience, and that was when I sought a local support group at weSPARK (http://wespark.org/). It was as inviting as walking into someone's living room, with services that ranged from traditional support groups to reiki, tai chi, meditation and reflexology, to support groups for my husband and son. They even have a gym next door that helps support women thought treatment and recovery! They also gave me the chance to "pay it forward" though support groups and scrapbooking classes I was able to lead.

Unfortunately they can be hard to find, but there are some amazing resources out there...and the online community makes them accessible, even for people in the most remote of areas. It's not always easy, especially as women, to acknowledge that we can't do it all alone. I try to remind women that in this, like it most things, we do best when we are in community...that seeking support is not "taking" but a process of give AND take.

As for where I turned, I think the most significant issues for me related to having been diagnosed at a relatively young age. My first concern was helping my son understand what was going on, and that took resources with particular knowledge, that frankly I did not find early enough. Today things are much better in that regard!!

As for my own support...my friends and family stepped up in truly moving and inspiring ways. In addition to a husband who never left my side, I had a tight circle of friends who were there for me each step of the way. That said, sometimes we need people who have "been there" when it comes to cancer...

One of the very best resources I found was the online community at the Young Survival Coalition (http://www.youngsurvival.org/). In addition to being a great place to ask questions (Talk About Health wasn't around!), the women there fully understood the complexity of parenting through cancer, feeling "too young," facing fertility issues, the limited treatment options for pre-menopausal women, building a career through cancer and so on.

Sometimes, after treatment, there is a drop that patients experience, and that was when I sought a local support group at weSPARK (http://wespark.org/). It was as inviting as walking into someone's living room, with services that ranged from traditional support groups to reiki, tai chi, meditation and reflexology, to support groups for my husband and son. They even have a gym next door that helps support women thought treatment and recovery! They also gave me the chance to "pay it forward" though support groups and scrapbooking classes I was able to lead.

Unfortunately they can be hard to find, but there are some amazing resources out there...and the online community makes them accessible, even for people in the most remote of areas. It's not always easy, especially as women, to acknowledge that we can't do it all alone. I try to remind women that in this, like it most things, we do best when we are in community...that seeking support is not "taking" but a process of give AND take.

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Latest Activity: 07 / 22 / 2011
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