Breast reconstruction tweet chat and the value of social media

Monday evening, February 22, 2016, was a much anticipated #bcsm tweet chat for me. I reached out to Dr. Deanna Attai in late 2015 when she was requesting topics to cover for the upcoming year. I asked for an evening of discussion about breast reconstruction options after mastectomy. I have been diagnosed with breast cancer twice and had a very successful experience using my own tissue to reconstruct my breast, DIEP flap surgery. Breast reconstruction advocacy and educating other women about the topic is what I do now so I was delighted when Dr. Attai put us on the schedule. From there I began to "circle the wagons" for support.

I reached out to the social media specialist at the American Society of Plastic Surgeons (ASPS) to see if they would be interested in participating and adding to the discussion. They put their expert plastic surgeon and current president of ASPS, Dr. David Song, front and center as the specialist on the topic to partner with me for the evening. The purpose was to provide more education and information to those who could join us for the tweet chat. We set up a telecom to plan the topics and went over the basics of the tweet chat. We strategized about the best way to promote the event and which social media platforms to use for that.

It was important for me to have them in the discussion because they were an impressive force behind the passage of the Breast Cancer Patient Education Act. This was a bill that was passed into law on December 18, 2015, as an education campaign to inform and educate women and men about their breast reconstruction options. We promoted the chat as planned and on the evening of February 22nd, we all sat poised, with fingers in "tweet position" ready to begin the discussion.

When the "fastest hour on Twitter" came to an end I admittedly had to ask myself, "Did I tweet out enough information?" I truly sat back during the discussion at one point and just let the comments and questions fly and felt like I could have been doing more. It wasn't until I looked at the summary of the conversation provided by Dr. Attai on Symplur the next day that it all fell into place for me. I realized how much I didn't see that evening as I was furiously trying to keep up with the tweets. It gave me a lot of satisfaction to see what was discussed, what I missed during the actual session and how multi-faceted the topic of breast reconstruction after mastectomy truly is.

Here is a brief summary of key items covered and some of the comments that were shared.

Complications of breast reconstruction

• Smoking! A big no-no when it comes to reconstruction surgery. You've just got to stop before, after and hopefully for good.
• Possible Infection rates: One participant remarked she had 6 surgeries, due in large part to an infection. Although she was told about outcomes she didn't feel fully informed about complications. She said when those complications popped up, "it was really hard."
• A Stage IV patient weighed in about the possibility of reconstruction when you're faced with metastatic disease. Caution was given from one physician stating that it is still controversial as it must be evaluated on a patient by patient level. Hope was given by another physician stating that it is an option even for patients with mets and offered that studies have been shown to increase quality of life. It was important that the disease is stabilized and the patient is in good enough health for the reconstruction.
• Radiation therapy was labeled by one as a "wild card." It can affect outcomes both before and after reconstruction whether using implants or autologous flaps (your own tissue to reconstruct the breast).
• The timing of reconstruction was a hot topic. It was mentioned more than once that breast cancer is rarely an emergency situation. A majority of the time, surgery and the research to plan reconstruction is something that can wait for both women and men. Many stated that patients felt rushed into a decision because of the stigma, "the cancer needs to come out now." It is sometimes perceived as more of a "mental emergency" than a "medical emergency."
• It was important to note that reconstruction rarely is one procedure. Revisions and repairs often required more than one surgery and sometimes multiple surgeries to achieve desired patient outcomes.
• Insurance concerns loom large for many. Some facilities don't use certain insurance providers which lead to roadblocks for some patients.
• Travel is often times required to get to a qualified plastic surgeon or to find one that carries your insurance.
• Some women try to get all necessary surgeries done in one year so that they do not have to pay their deductibles and meet their out of pocket two years in a row. It is not possible for some to plan that way due to continued adjunctive therapy or further tests/scans prescribed for the breast cancer diagnosis.

Breast Cancer Patient Education Act #BCPEA

• Dr. Song stated that "the goal of the #BCPEA is to inform patients about the availability of breast reconstructions and other alternatives post-mastectomy."
• Quick facts:
  • A majority of women don't receive the information.
  • There are not enough plastic or micro-surgeons doing reconstruction, especially in rural areas.
  • Underserved patients don't get the advanced options or sometimes any options.
• One physician mentioned that some surgeons, unfortunately, are still a little "old school" for offering or educating about breast reconstruction options.
• The overriding opinion was that the first line of information for reconstruction options and education should come from the general surgeon or breast surgeon immediately after the diagnosis.
• And then there was this little nugget from ASPS that I completely missed and was very happy to come across. "The stories of #BreastReconstruction patients was a HUGE force behind #BCPEA becoming law last year." That one made me smile and I immediately re-tweeted after reading it. It was validation that our voices do make a difference. Thank you ASPS for that sweet tweet!

Men and breast cancer

• Breast Reconstruction is not something men ask about or think about as much as women.
• Fat grafting and liposuction are used more often than flap surgery in men.
• One gentleman stated that he had very little fat to use and the response tweet to that was, "…even very lean people usually have some fat to harvest."
• Many men don't realize that reconstruction/chest wall reshaping is an option. They have to ask.
• One gentleman was perplexed to know that more women weren't informed of their options. His impression was that there was a real push for women to get reconstruction done.

The team approach

• Complications should be discussed with EVERY surgery and for recon, breast surgeon AND plastic should be discussing them.
• A woman asked how do breast surgeons and plastic surgeons communicate w/ each other about a breast cancer patient's "aesthetic" desire prior to the OR? Great question!
• Many of the physicians participating agreed that a multi-disciplinary team was crucial to optimal patient outcomes.
• Shared decision making with the patient as part of this multi-disciplinary team was important.
• One happy patient stated: "My BS (breast surgeon) & PS (plastic surgeon) worked very well together. I'm one lucky woman to have landed in their OR."

Patients being their own advocates

• This was a hot topic and many felt that patient or nurse navigators should be available at cancer facilities to help navigate the complex waters of cancer care.
• It was stated over and over that patients should be their own advocates.
• I countered with the fact that many patients don't have the wherewithal to do that and that is when the need for a navigator or advocate is paramount.
• Seeking second opinions is in alignment with this topic and it seemed to be a consensus between physicians, health care coaches and patients that second opinions are an important part of this equation in breast reconstruction for clarity and patient desired outcomes.

Opinions and the "hot button" for the evening

• This comment precipitated quite a discussion: "Let's go back to why women want recon in the first place, possibly too much emphasis on breasts equal sexuality."
• Reply from Dr. Song: "I'm glad you brought this up. It's NOT about vanity. It's about restoring what cancer removes!"
• And another follow-up response: "I'm almost 60 so I have one view, probably diff for young women."
• I had a great microsurgeon and wonderful experience for my DIEPflap so admittedly defended my age and position by a rebuttal remark of: "I'm 60 and have more confidence in my body now than I did when I was 20!"
• One woman weighed in and said, "I think most people want to feel "normal" just like those who get prosthetics for other areas of the body as well."
• One of the gentlemen in the chat discussion chimed in with: "I was also concerned about my appearance in a swimsuit, especially soon after surgery. It's worked out okay."
• Patients often feel that an explanation for why they are doing reconstruction is necessary. A reply from a participant on this matter: "Recon or no recon is a personal choice. The PATIENT's choice. Family/friends don't have to like her decision, they must respect it."

It's not uncommon for Tweet chats to stray from the original topic questions that are presented for the evening. That is the beauty of tweet chats. They are spontaneous, organic and full of fast and furious answers and opinions. A perfect example of this was when two physicians both introduced themselves that evening by stating they would be "lurking" and tweet when they could. The reason? They were both tending to their children who were still up. You've just got to admire that dedication!

Did this tweet chat stick exactly to the topics outline? No. Did this tweet chat serve the function of an open and informative evening about breast reconstruction? Absolutely; in my humble opinion!

I looked at the data analytics provided and to my amazement, there were over 4.5 million impressions, 826 tweets, 74 participants, and the average tweets per participant was 11. That is a lot of reading, processing and sharing all in one hour. Social media engagement is important not only for physicians but for patients and in this instance, it was shared information and stories from both of those entities. It was an evening of interaction among medical peers, patients, and healthcare coaches from across the country. Some of those tweets will be viewed, re-tweeted and liked by those who were not even part of the chat. That is the positive take home for me from the evening. It is time to rest the thumbs and digits for the next chat. A big thank you to all who participated!