Breast Cancer in Other Boob

Oh Kane! This completely stinks.

Of course I'm going to ask Binney to weigh in, as she really is the expert.

Basic stuff to decrease the risk of LE on the left: 1) don't raise the arm above shoulder height for 10-14 days post op (turns out that's the standard in other countries...), 2) can you see your LE therapist before surgery, for pre-op measurements and some MLD?, 3) chemo in the arm will increase the risk of LE as it's so irritating, can they at least put in a PICC?, 4) talk to your surgeon about your LE as gentle handling of the tissues makes a difference, 4)seeing a LE therapist through out treatment would be helpful--it's the protocol for "high risk" patients at one of the local hospitals, and I've seen women do well--one in particular that I think about, was given a sleeve/gauntlet and wore it through chemo and radiation and is doing well still. At least with the BMX there's a low chance you'll need rads--and rads are a big risk for LE.

Remember the SUSO page for health care providers? Perhaps that would be helpful.

http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

How can we help?

Kira

Oh, Kane, I am so sorry. I have had truncal LE for almost four years and had begun having slight feelings of arm involvement prior to surgery to deconstruct my reconstruction and remove my implants. I was concerned about whether the surgery would exacerbate the current truncal LE or increase the likelihood of arm developing LE. I did a lot of research and ended up traveling to Charleston to have Dr. Massey perform my surgery. It was a combination of reasons I chose to travel for the surgey, but her "protect the limb" protocol was impressive and one of them. I asked a few local surgeons if they could provide the same care, but it wasn't possible in my area. I don't know where you live, but it is worth asking these questions that can minimize the impact of surgery:




1. Can you have IV placed in neck or foot for surgery? (I had in neck)

2. Can you have BP monitored on calf during surgery?

3. Can both of your arms be wrapped prior to surgery?

4. I went for several sessions of MLD prior to surgery just to make sure everything was in tip top shape. MLD prior to surgery, after and in the days that follow is helpful in reducing post surgery swelling and in maintaining the level of your current LE. It's much easier to have someone do for you while you are healing.




I have included a link to Dr. Massey's protect the limb protocol. I think it should be the standard for all patients having a mastectomy. Kira mentioned baseline measurements of your unaffected arm, and I agree that would be helpful, and that happens to be part of the protocol as well. I am not pushing Dr. Massey, but I am using her as an example of the best proactive care. As a PS she has an excellent understanding LE and its treatment because she has LANA certification and is working on the development of lymph node transfer surgeries.




http://www.nilymph.com/proactive

((((Kane)))) Cyber hugs are not much help.  Sorry to see you back.

Oh Kane

Kane, my stomach did that drop-to-the-floor feeling when I read this news. It sounds like you have a plan already in place, and you're already getting back into Extreme Sport mode to cope with the next steps. You inspire! But I sure wish you didn't have to.

Unless you already have a clear and understandable explanation for the no-port ruling, I'm with Leah on seeking out another opinion. Otherwise, it looks like there are already lots of suggestions here for dealing with the bilat problem. 

Just want to add that I hear you on not wanting to deal with LE in your other arm too, but this time around you're so much more aware that if you have to deal with it at all you'll be right on top of it from the earliest moment. Which makes it a very different experience, both in treatment and in on-going control. 

Tell us, please, how we can help.

Warm hugs, prayers,
Binney

Good luck Kane.

Kane, making up your mind is already one giant testimony to your strength--and a big step toward putting this behind you. Keep us posted.

Blech! I hear you on being pissed off, yet ready to face off with the beast once again. I can't offer much advice, except to say that when I had my most recent surgery, I had some LE issues on both sides, having just finished chemo. I asked that they not use my arms at all, and they didn't. They started an IV in my ankle/foot, then when I was knocked out, they put the second IV in my neck. The BP monitor was on my other leg. It worked fine and saved me some of the LE worry.

Kane--like the others said.  I wish we could have a group tea party to lift up your spirits.  You are strong.  Keep us posted.  I will be thinking about you.  (())

Kane,

Hang in there.  We will be thinking of you.

Sue 

Kane, we're all here and hoping this new cancer journey goes as smoothly as possible.

Glad your LE is beautifully managed and your onc is supportive and you can get the port.

I think the fact that you can feel the sadness is a good thing: I was so numb and terrified, I felt nothing for a long time.

Hang in there and thanks for the update.

Kira

Oh Kane--I would be down too if I had to do this journey over as you do.  I am happy your LE is under control right now.  Now go out and treat yourself to something fun.  Pamper yourself.  You deserve it. 

Kane, thinking of you today. The weekends are so stupid long, but I hope you're doing something restoring to your spirit. Hugs,
Binney