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← Return to Lobular Breast Cancer: Let's share and support each other
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Lobular Breast Cancer: Let's share and support each other
Breast Cancer | Last Active: Oct 25 3:49pm | Replies (558)Comment receiving replies
This comment is for us all, but really for our moderators and volunteer mentors- yes, sharing links to research and other sources on lobular cancer would be greatly beneficial to all of us so that we can make the best informed decisions for our treatment paths. I believe these discussion groups were created by Mayo to help support people in their journey, but I wonder if Mayo Clinicians and Researchers could use information we provide to one another to drive areas of research and novel treatment at the Mayo Clinic? Maybe Mayo could collate side effects of drugs, BC recurrence, metastsis, etc (not being identified to individual persons) to find general trends that could help direct research, treatment, and best practice on LCIS, ILC, and dual diagnosis ILC/IDC? In any case, I really appreciate people sharing their experiences here... our personal experiences are fountains of knowledge.
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@anatomary, you're absolutely right that the real experiences shared in the discussion forums are valuable for fellow patients, and also potentially to assist clinicians and researchers to better understand what matters to patients. For example, the discussions illuminate where there may be gaps in health education or identify research questions or areas for further study.
You may notice that we periodically post messages on Connect inviting people to take part in Mayo-led projects. Here are a few examples that were recently posted:
- Mayo seeking volunteers: Chemo-Induced Peripheral Neuropathy study https://connect.mayoclinic.org/discussion/mayo-seeking-volunteers-chemo-induced-peripheral-neuropathy-study/
- Mayo Clinic Arizona seeks Breast Cancer Survivors for Exercise Study https://connect.mayoclinic.org/discussion/mayo-clinic-arizona-seeks-breast-cancer-survivors-for-exercise-study/
- FULL: Mayo Learning on Women & Alcohol Misuse https://connect.mayoclinic.org/discussion/mayo-invites-you-to-a-virtual-learning-on-women-alcohol-misuse/
- Live outside US? Help Mayo improve website for international patients https://connect.mayoclinic.org/discussion/live-outside-us-help-mayo-improve-website-for-international-patients/
Other projects that Connect members have participated in include sharing their stories for publications and health tools for patients. As an example, several members from the Breast Cancer support group contributed to this book:
- Beyond Breast Cancer https://mcpress.mayoclinic.org/product/beyond-breast-cancer/
It's important to note that the discussions and member posts are never used for research or projects without member consent. You will always be asked. As according to our Community Guidelines, "Solicitations for research must be Mayo Clinic and IRB-approved. Requests for product reviews, such as feedback on apps, devices, etc. are not allowed without prior consent." See details here: https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/
Keep your eye out for a post that I'll be making later this week. We are looking for breast cancer survivors who live rurally to advise new research conducted by Mayo Clinic.