Terry Lynn Arnold, founder, The IBC Network Foundation

08/04/2026

We're doing something pretty darn cool, and I want to tell you about it!!!
Join us! Sat August 29th in the Columbus, Ohio area!

The Hope Run for Inflammatory Breast Cancer https://share.google/EcXVy1vF41MQIBBL0

07/31/2026

I would have never thought in all of my life being from a family that has a very slim cancer history that I would be part of an inherited cancer study, and serve on committee at Vanderbilt. I'm grateful that they shared my story.I'm hoping this information to be helpful to someone.

https://www.instagram.com/p/Dbdlm8fFIxc/?igsh=dTNwa3liOXkzbGs0

07/30/2026

I think this is a fascinating article and it's a very complicated conversation.

https://www.facebook.com/share/p/185vg17ACR/

Many studies show that breast reconstruction improves breast-cancer patients’ overall mental health. Yet many patients say they felt underprepared by their doctors for the length and intensity of the breast-reconstruction process. Up to 40 percent of women who undergo breast reconstruction end up dissatisfied with the results.

“To me, the risk of a complication is the Achilles’ heel of breast reconstruction. It’s a really important operation. It has the potential to restore quality of life,” said Dr. Clara Lee, a plastic surgeon and professor. “But there’s this relatively high complication risk.” For some women with breast cancer, that complication risk means undergoing multiple unplanned surgeries in pursuit of rebuilding the breasts they lost to cancer. And even if everything goes well, with minimal or even zero complications, almost all breast reconstructions will involve multiple “revision” operations.

What drives some women to persist through so many years of so many surgeries? It’s difficult to understand unless you’re in it, and many of the women Melissa Dahl spoke to found it hard to articulate. “Where it gets hard,” said Dr. Monique C. James, a psychiatrist who works with patients undergoing mastectomy and reconstruction, “is when people have assigned meanings to their breasts that connect to their identity.” She starts her relationship with her patients by asking each one the same question: “What do your breasts mean to you?” Just like breast reconstruction, the question is often more complicated than it seems.

Dahl reports on the complication-riddled process of breast reconstruction: https://nymag.visitlink.me/pcEAWK

07/26/2026

I guess in some ways I'm used to it so I forget, but yesterday, a repair man was at my house, and I turned my back to him. I had on the sleeplesstop, and he said, "Oh my god, what happened to your arm?"

When I look at myself straight on, I don't notice how swollen it is so much, but apparently from the backside, the swelling is quite noticeable.

Last summer I went on a trip and I lost a lot of ground due to the the heat and it was difficult to maintain my arm maintenance care. I've been slowly losing ground ever since, and I told myself that once it got to be the end of July, no matter what I was going to focus on it. So I'm back into my sleeve and I'm using my pump. I'm not necessarily unhappy that I lost ground because if I hadn't done all the things i've done up to this date it would be far worse, but nonetheless, I'm hoping to get it a little bit more under control.

I feel bad complaining, because I have so much gratitude, but also this is my grumpy place.Because i've been dealing with this for almost twenty years....but again, I'm grateful for the technology and the help and the support that I do have.

07/16/2026

This is a snippet from an early morning text from Dr. Gay Devi s she's heading to give a lecture at AACR Foundation

'Gave the Grand rounds talk this week about the journey building the (IBC) consortium. You will like this slide. It is your quote. "

07/12/2026

You know, when life gives you lemons, they say, make lemonade, and this is definitely one of those moments. Because early my diagnosis, I met this wonderful lady and I am sharing a picture of us last night at the The Kenney Store LLC . She's been my mentor and held my hand. She was diagnosed twenty three years ago at the age thirty seven, and she is well, and she spent the weekend with me and we had the most fun time.
But I wanted to share this story because I want people to see when I say hope, always.I mean it.
And i'm so grateful that she spent the weekend with us.It's been on my calendar for months and it was a glorious time.

Amy Estabrook Pitman the door is always open.I cannot wait to see you again!

Please read and share her story.

"Even on my worst days after chemo, I knew I had to fight"

https://www.shreveporttimes.com/story/opinion/guest-columnists/2016/10/13/even-my-worst-days-after-chemo-knew-had-fight/91901280/?fbclid=IwVERDUATAr9dleHRuA2FlbQIxMABzcnRjBmFwcF9pZAwzNTA2ODU1MzE3MjgAAR6UZ4F-Wol98IAbQk6pDi7TL16qb7zar3_4RS6sYMC8qOzWXs4JjEKgS0SK9g_aem_WO5Kf6ikhP9hogI2AKE9HQ

06/27/2026

It's been a very demanding week, and on top of what is already a workload that is normally pretty heavy at best. But also this week is the deadline for the grants submissions for the DOD and the NIH. I always hold space in my week for this I am, one of the advocates that writes of support letters. As you can imagine, the workload is quite heavy on the physicians and researchers to get all the paperwork completed. Even though I have a heads up that the work is coming, the requests come in a big rush and it is not uncommon for me to have to pull a couple all nighters to keep up. Also expectations are getting higher of what makes an good candidate as a advocate. It's good to see this research going forward. Hopefully they will be given the requested funds. I'll do some updates and also there's other things I would like to share about this process.I'll make some videos and write some articles on the topic soon.

06/20/2026

This little graphic might not seem very interesting to you, but it is incredibly validating to me. It is from a young researcher in Belgium, who i've met before and he's requesting our help for manuscript review of his research.

But what's so exciting is this is the second such email i've gotten from another country in the last few days we're someone who was seeking the The IBC Network Foundation assistant from another country. I received a similar email from Australia a few days ago, and I'm quite excited about that necause there's been virtually no research in Australia. I'm hoping very much to connect some dots here and loop her in to how we can help, and then also loop her in with our friends in Australia.
It's sort of behind the scenes, but we were having a strong international impact and stay tuned, and keep supporting us, because it really matters.
Hope Always

06/19/2026

I cannot share this enough because there is so much to know, and I'm looking forward to sharing the papers.

06/16/2026

Let us know!!!