Fingers crossed for Bjeans/Beth and husband today!

What a nice post to see when opening up the board. : )

A big whew: the PET CT was clean. We met with the oncologist first and his first words were, "So here's the good news."

Plan is SLNB and WLE asap, no surprise. The only wrinkle (no pun intended) is the surgeon will also bring in a plastic surgeon. The current incision is 2"+ on the upper chest. A plastic surgeon can rotate skin flaps to have a closure that won't be as long and can better heal, because simple closure of an ellipse can be so tight there can be wound healing issues. (My interpretation: there isn't as much stretchy skin near the clavicle as on other areas like the stomach.)

Celeste, btw, as of July 2017 (?) they stopped doing CLNDs; the oncologist mentioned a study you discussed. 

When directly asked about studies there or elsewhere, he explained they are doing a study comparing Opdivo vs. Opdivo and Yervoy (modified), and said that going elsewhere for studies was "patient directed." He wants the surgery done asap.

J.Bun, you were right about this center. Our experience was extremely positive from the first moment, not that being warmly welcomed and the staff kindly laughing at my lame when-nervous jokes affects medical outcome. But it can sure brighten a frightening time. (A receptionist wore a big "Cancer Sucks" button.)

With practically no wait time, we met with the surgeon, oncologist, dermatologist (director) and nurse navigator (patient advocate) over 2.5 hours. Dr. Venna examined every mole and recommended it be done every four months.

The nurse navigator went over logistics and gave us detailed sunscreen instructions. She emphasized repeatedly that we could call her for anything as often as we wanted – that one person who said he wouldn't need to call, called her six times after he left his first appointment

A large packet of info was provided, including diagrams and pictures that were referenced, articles, potential outcomes of the SNLB, support group info, etc. A 55-page patient journal is available.

David and I agreed that everything there aligned with the info and education provided here and on your blog, Celeste. We were able to keep up with the doc talk and ask questions without feeling overwhelmed because of it. Thank you, thanks to all of you to whoever you post to and whatever you write. You rock. (More cowbell!)

Next step: surgery, then meeting with the surgeon and oncologist about a week post op when pathology report is back and then next steps, when we will be overwhelmed again, but that's okay. 

Beth

Hey Beth,

I was reading your original post and I can confidently say that I've been where you are and also that you couldn't have better advocate and information source than Bubbles/Celeste, she understands the current research like no one else.  4 years ago, in February 2014, my husband had a 19 mm tumor (yes, I had to tell people there wasn't a decimal point missing including the new dermotologist we use for regular chekcs) discovered with a mitotic rate of 9.  I think after they removed it it was 22 x 20 , I still read the pathology report occasionally.    I'm a medical librarian who is now in clinical trial research at UM so I had some inkling of how bad all these prognostic indicators were when he handed me the pathology report from his punch biopsy before we scheduled anything at MD Anderson. I also remember reading all the research regarding prognosis and what factors play into better outcomes (thickness, mitotic rate, etc)   But I can report, that we are four years out NED from that moment, with scans every three months first two years and now every six months.  I can remember sitting with Dr. Amaria in February 2014 at MD Anderson and thinking this is it but somehow we've taken a different path to date. 

I truly related to your story and hope you have the best results soon. I can completely relate.  Please reach out if you need anything.  We still have our home in Houston, so if you all need anything, we are there. 

Keeping fingers crossed for the best news.