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Sep 20, 2010 10:35PM
I would have answered you earlier, but this forum doesn't support posting from iPads (you can register, just not post - strange!)
Even though I'm not much of a surfer, I do understand and have data about your in-water activities. I used to be a NOAA diver and dove for AAUS, etc. also. I understand about something being your "life". It is not "shallow" it is your "life" and as important as many other situations. Now, my underwater photography is my passion, but it was tragically interrupted by this breast cancer.
I have a dive buddy who is a plastic surgeon and specializes in breasts, a very very good surgeon at that. Before my BMX he told me if I just got one MX (my R breast was healthy) he could do the "fat grafting" procedure, where they liposuction, I think, "donated (lol)" fat and form a very natural looking breast. He said not many surgeons in the US were doing this reconstruction, but he was one who was and he was very pleased with the results. He didn't suggest implants with all the diving I want to get back into. Even though DAN (Divers Alert Network) says women can dive with implants, he did not suggest it. He did not suggest the other reconstruction procedures for me either, knowing my activity level and all. Only problem he told me I'd have is "you don't have a lot of fat to donate" so he really said it would be a lot easier to reconstruct one breast vs two. I am in Florida, he is in the Orlando area, if you want his name PM me.
In my situation, originally we thought from biopsy, etc. my tumor was 1 cm, 1-1/2 cm at the most with "no evidence of lymphovascular invasion" and no swollen lymph nodes. As you can tell from my diagnosis that changed drastically after surgery. I had an ALND because the surgeon thought 4 nodes looked "suspicious" and he took all the nodes out. Turns out all 29 were positive - what a shocker! One never knows till after surgery, but at least none of my nodes were "extra-capsular" or clumped as they say, just a lot of positive ones with bits of cancer. I wonder if all the time I spent at depth, under pressure, helped push the cancer in my nodes? Who knows?
So as far as reconstruction, if you go that route, the above is excellent advice if you really want to keep your range-of-motion and activities. You might be OK with some other reconstruction procedure - I don't know. I opted out of any reconstruction after talking with my breast cancer surgeon for over 2 hours and going over my activities and how important it was for me to get back to them, etc. He is an amazing breast cancer surgeon, and yes, it does matter the skill of your surgeon and how much range-of-motion you will be left with afterwards (and how good you will look, my OT says my scars are "gorgeous"). My breast cancer surgeon helped develop the SNB technique and is on Wikipedia as one of the 3 authors of the original paper. He is amazing and said something that should comfort you. He has a database research project of 20,000 breast cancer patients he has operated on. He said "None of my swimmers have gotten lymphedema". And he tracks his patients well. That should give you some big hope.
I'm seeing an excellent lymphedema therapist/OT who authored a couple of articles on the StepUp Speakout site referenced in these forums. She has told me though that some of the reconstruction procedures seriously restrict your pectoral muscles amongst others, be careful about that. She was happy that with my particular activities, I opted out of reconstruction. Anyway I'm doing really well with the therapy, I did have some swelling after surgery, during chemo, when I rode my bike too much in the summer Florida heat. I wrapped my involved arm for a bit under her direction and got a cool-looking lymphedivas compression sleeve. I'm just about to be discharged, for now from therapy, and my very experienced therapist says I do not have lymphedema. I will always wear a compression sleeve during exercise though so I don't develop it. I even like swimming in one, personally. But, water is our friend and I believe you dive down a lot also, with surfing. That water pressure is your friend as is neoprene if you surf in cooler water - a neoprene wetsuit will act like a compression sleeve and will be great for you during surfing. DAN (Divers Alert Network at Duke University Med Ctr NC) says the divers they studied with lymphedema did much better, their lymphedema got markedly better, after a couple of days in a row of scuba diving.
So while I can't chime in about reconstruction experience as I did not go that route personally, the advice above should give you some hope, some alternatives, to get back to what you love! I did diving off my kayak in the springs around here and I fully intend to paddle a kayak again and dive, lug around my heavy underwater camera, etc. etc. I've been given the tools I need my my lymphedema therapist (I too suggest you see one) and I will always wear my sleeve while exercising, etc.
Oh, I was in the best shape of my life when I was diagnosed in April, but unfortunately I've had a real rough time with chemo - very sick on A/C and tons of pain with the Taxol. Some people's constitutions and systems are more sensitive than others and I've got a sensitive one. But, I will get through it and I encourage you to do all the recommended steps your doctors suggest. You want to live a long life and catch a LOT more waves. Get the best doctors you can, the best PT/OT and listen to their advice.
Good Luck! I've always wanted to photograph surfers in the surf zone! PM me is you have any ?s. I don't know where in the world you are?
Diagnosis-4/22/10 BMX-5/10/10 ER/PR+ (both 100%) HER2- 5.2cm tumor 29/29+ nodes Grade 3 Stage 3c Path disagreement carcinoma type "Single-focal Invasive Carcinoma, type cannot be determined" Avid diver/UWphotographer I dream of my underwater friends!