An Evening of Learning About Lobular!

THANK YOU! I registered

Huffpuff, I registered for the webinar. I live too far to attend, but if I could get there, I would! Good information about the hotels for others. I am looking forward to what they have to say. Looks like a great panel! Nice to have something dedicated to ILC!

Bumping thisto get others attention.

Do you know if webinar attendees will be able to submit questions to the speakers?

That’s great.

Thanks Huffpuff. I just signed up for the webinar and am really looking forward to it.

I hope it is recorded! I will be working during that time but I am very interested in it. Thank you for sharing this

I had to come back to ask, did anyone learn anything new from the webinar? I was disappointed in it. The questions were random, all over the place, and while many were excellent questions, I felt most have been answered on this site and it would have been more effective to organize the questions from diagnosis to treatments so there was a flow and building up of information. The way they did it, talking about one thing then something totally different was ridiculous. For me it was painful to listen to because of the random questions. They asked for questions long before last night and had plenty of time to organize them!

I also was annoyed that Dr. William Gavishar said that stage 1 and 2 can't metastasize. Seriously? I am not sure those like ShetlandPony would agree with that! He said that within the first 15 minutes and all I could think of was "then why I am taking Letrozole?" All this panel did was cause me to doubt everything I did and continue to do. I know there is no way I would take an AI for 10 years! But, then the entire presentation was geared to those 40 and younger. I felt those like myself who are 60+ were left out, as if we aren't worth helping. I think many like myself are better off NOT watching these. I actually wouldn't have watched had I not registered a month ago and received the email reminder with the link.

It was more unhelpful than helpful. I appreciate the fact that they are trying to do more research, but it felt like they see us more as guinea pigs than patients.

I would have also suggested that Leigh, from Lobular Alliance, not wear a scarf but a wig if she indeed has no hair and doesn't feel comfortable with her head uncovered. I get that scarves are comfortable, and wigs can be expensive, but as soon as I saw her I felt it was a "look at me, I had cancer" moment for her. She was very well spoken, but had she looked like someone who never had cancer, it would have helped young women feel more hopeful! I feel more often than not women like to announce to the world that they have cancer with their choice of head cover. I understand that wigs are expensive, but I am far more sympathetic for those who don't wear their diagnosis on their sleeve, or head in this case. I think young women who get this horrific diagnosis need to see positive strong women role models, not hairless, sad faced women. I have actually seen some bald women who not only look absolutely beautiful, but the way they carry themselves screams "I am a woman with self esteem and I am no less normal!" Baldness and scarves have become a symbol for breast cancer and I for one think that needs to change! It screams pity and pity is the last thing anyone with cancer needs!

Also, I was sent a survey, but the link didn't work! Way to get feedback!

I missed the first hour of it but didn't really learn anything new. I was also disappointed in the questions- with such limited time and so many questions, I think they should have kept the questions specific to lobular. I was particularly interested in information on metastasis patterns and recommended screenings, but didn't hear anything about that. Was that covered during the first hour or so?

Thanks Huffpuff.

Just to add, the plan is to have a full day (May 14) devoted to patient advocates at the 2020 conference in Pittsburgh. This would include educational sessions given by MD's or PhD's on the biology of ILC, ILC related research, clinical updates for ILC and time to ask questions and mingle with presenters as well as researchers. There will also be presentations from experienced advocates on what advocacy is, the role of social media and how the LBCA is working to move the needle forward on research and how advocates can help.

The Cleveland Clinic event is an example of how one advocate can grow awareness and she did and she made that evening happen. One evening can't be everything for all people but there was nothing before this and we are so grateful for that local advocate making things happen and getting representatives of the ILC advocacy community invited and I hope she has inspired more of us to do the same. We are our own best advocates.

This webinar is now available to see at:

https://lobularbreastcancer.org/cleveland2019/