DIEP 2013

dvygirl, How long ago did you have your mx?  I know with me most normal everyday activities are ok, it's stuff life exercising where I find my range of motion is not totally back, absolutely will not lift my 32 pound grandson, I don't know if that is fear, or I can't. Let me tell you it's tough when he  puts his little arms up to be picked up, and I have to knell down to hug him, and tell him I can't pick him up.  I do all the stretches and exercises the BS recommended, and they have helped.  I wonder how much of a set back diep flap will be?  I am hoping without the mx, and just diep my range of motion won't be effected too much again.

First, thanks to all who replied regarding the burning sensation.



I never had sleeping issues until hysterectomy/oopherectomy 4 years ago. Slept horribly (plus the Super Charged Hot Flashes that come with "surgical menopause") for 3 years. It was really getting better during the past year; the recent MX/DIEP has set me back for now. I haven't tried anything yet to help me sleep, but will consider if it continues.

Goldie - the arm thing was very hard for me. I play viola and conduct an orchestra during the school year so range of motion and comfort are huge. I am off until September so have time to get my strength and ROM back but I hate that it effects my arms so much.



SheChirple - I always took benadryl at night for seasonal allergies ( with the side benefit of sleepiness) but read on another board that it reduces the serum level of tamoxifen. I messaged my MO and sure enough, they said occasionally benadryl is fine but not regularly.



That said, I am not much help for sleep issues as I generally sleep well. I do appreciate this immensely though so try not to hate me...

I've been taking ambien for ever and so far so good. I just wish it would keep me asleep too. I have Xanax, but it doesn't do anything for me, so I don't even take it anymore. Valium I love. I took it for three nights after I came home from hospital and put me to sleep like a baby. Then decided to stop taking it so I wouldn't get addicted to it. I already take enough meds!

My DH and I went to best buy and got a new refrigerator. The one with French doors and right underneath it has a drawer with its own temperature where I can keep kids snacks! How awesome is that! I'm just beyond excited

There are quite a few docs in Boston that do the diep.  Start with Google, and then call your most prestigious hospitals and start asking their cancer centers.  You won't have to travel to NOLA.

Shocked,

I live in Anchorage, AK so thought for sure I'd spend a fortune traveling to Seattle to get treatment or California even but I did my research and have found two local surgeons my BS and PS team and so far they've done fantastic work. I had a UMX two weeks ago and because of the way it was done, I am not much smaller than normal size with the help of a dreaded TE. My point is, do your research, talk to lots of people locally, and you can find someone I'm sure. I haven't had my flap done yet, but unless rads kills the tissue, I am confident it will turn out beautifully.

shocked.....it sounds like you are in the very early stages of diagnosis? A scary and upsetting time, for sure, that we can all relate to. I'm not clear on why you feel there aren't very good options for you in the Boston area???? I think some of our ladies have had their surgeries there, and are happy with their surgeons and results. When I was researching reconstruction options, there was a great video of the diep procedure produced by Beth Israel/Deaconess Hospital which is in Boston. I believe they have a very highly respected breast cancer centre...and I'm sure there are others.

We know it's hard, but try to take a deep breath...you do have time to sort through the options.

jakig and janetM....thinking of you both....this time next week, it'll be behind you and you'll be on the path to recovery.

Janet:  the bras were for my daughter....lol

Hi Flappers.....I feel like Rip Van Winkle......fall asleep for a few days (from jet lag) and the whole thread has jumped a thousand miles! Still awfully tired, but wanted to say hi....maybe another post tomorrow......



(((Hugs)))



Namaste and God bless - Jackie

Hi faith,

So sorry about your grandfather. So hard. I lost both of my parents last year to Dementia, both in their mid seventies. They died twelve days apart. It was a horrible 7 years to see them deteriorate. I am just glad now that they are not uncomfortable, and that they don't have to worry about me now, as I go down this BC path. And that I don't have to worry about them too. Finally done with being a squeaky wheel for them, dealing with doctors, insurance, systems. Etc... And now this.

I noticed you are a runner, as am I, and one of my fears in general is that my body will not be able to do the things I like to do. I run, bike, ski, tennis, I'm active! And this DX came just as I was refining my workout program for the summer. Im in good shape, healthy! Was just about to get a trainer to learn some new techniques. This is not making me happy! But until I do surgery or whatever else they may prescribe, I'm "in training", while trying to gain some weight so they can do the diep or sgap on me. Anyway, just wondering how long this kind of thing can take me off my running shoes for. Especially if I do the sgap. I imagine my butt will hurt.

Shocked, I play tennis too. My DIEP surgery was January 28. I had complication: ab-incision opened up 10 days post-op. compare to most of the flapers here, I am a slow healer, but I was back on the tennis court April 20. I gained at least 15lb before surgery and I am back to my original weight now. Good luck finding surgeons in your area. My teams, in PGH PA, did a great job.

Shocked....yep, feeling blindsided and not in control of your future is one of the hardest "first steps" on this path. Unfortunately, things like cancer don't have any respect for what else is going on in your life or what you may be "ready to handle". When I was in my early stages, I think my anger at being diagnosed, was carried over into anger at the docs and tx. I can see that now, I couldn't 20+ years ago. I was just angry. 

Keep on with your physical activities....going into this fight as fit as possible will be one thing you CAN be in control of, and will certainly help you. It'll also help get some of that "anger" out too! Not sure how successful or necessary the weight gain thing will be for you.....stress/high activitiy usually means weight LOSS for me!

Keep asking questions, and asking for help. Your choices should clearer after talking to your oncologist. I'm not sure what dfci is, but, again, in your area there should be choices of docs and support services. The NOLA reference is to a very good bc centre in New Orleans, and many ladies who are able/willing to travel away from home for surgery, have been very happy with their results, but I don't think they do tx such as chemo or rads.

Faith.....are your shins getting worse or better???? I was up last night, didn't see much action on the boards, so didn't post. Sorry you were awake too.

I am so blessed to have an HMo with breast cares teams.  Each patient is assigned a Breast Care Co-ordinator, who is an RN and is your touchpoint for everything.  You can go directly to your doctor.  However, if you are not sure, you can contact your BCC who gets your message to the right person.

Example: last year after my TE exchange to implants failed and I ended up having one of my implants removed, I was at a loss of what do I do next.  My PS had said we need to wait a few months for healing before we decide what to do.  However, here I was with one good implant, one tissue sparing mastectomy with bags of empty skin and I have to go to work everyday.  I was using the soft little pillow that came with my post op cami/compression on my right side so as to look a little normal. But, this thing is cotton, stuffed with polyfiber and itchy.  I called my BCC to see what could be done. She made the appropriate calls and w/in a day or two I was at Nordstroms being fitted for a prosthetic and bras.  Yes, I would only need them for a few months, 9 it turns out.  But, what a life saver.  I never would have known if I did not have this person to reach out to.

My HMO has been wonderful.  All patients should have such a co-ordinator, or care manager.   A touchpoint / contact person to help with all questions.  Just a navigator. 

Be sure to ask your primary doctor who that might be for you.

Shechirple - I did have a RN with my insurance company who worked with me when I wanted to go to an out of state Dr who specialized in free flaps. She was great, however it didn't happen that she even knew about me until well after the dx, the PS visits locally, and my journey into decision land! Can't blame the insurance company - I wasn't on their radar then. When I was they helped with getting stuff on the way to approval.



My dad however is on Medicare. And now in hospice. After oil change I will be visiting him for a few days with my #2 son who is flying in to join me.

Kuka, I fell asleep around 4, and i was up at 8 with the dogs.  I am so tired.