Diary of a bilateral mastectomy

twinkly

Hi Coni,

The numbness under the arm lasted quite a while with me....now,  2 1/2 years after my operation, lots of massage has made it so those nerves are regenerating.  I started seeing a massage therapist trained in scar and lymphatic recovery...and it's working like crazy!  She does these tiny movements with her hands....I feel this burning pain - almost like I could draw a line to show exactly where the pain is, and then she says 'that adhesion just let go so easily!'  She is starting to work on the big ball of scar tissue in my armpit, and it is slowly disappearing.  I Never would have thought any of this is possible, but it's working.  If anyone lives in Calgary, pls meg me and I'd be happy to give you her name.

My surgeon says it takes longer to heal on the inside than on the outside.  I had 72 staples removed, and they came out very easily....just little pinches, not the brief burning pain I had when the drains came out.

What's really really important is you do the exercises before radiation starts.  What you achieve during the operation and radiation will make a huge impact on your quality of life, because radiation kind of cooks the muscles, and they will never feel soft and supple again, without lots of massage.  Use any oil with vitamins, like olive oil or almond oil.

It took me a long time to come to terms with what I saw in the mirror.  And I'm not ashamed to admit there are still days that come along when I feel sorry for myself, wishing my reality were different.  But, everything I've learned on this journey makes it so these sad times don't last very long - and coming here to be with you, and share with you is a big part of it.

badger

bump for B123

twinkly

I want to share something amazing...!  For the past 3 months, I have been seeing Dee, a massage therapist that is trained in lymphedema, scar massage, etc.  I believe she is only 1 of 3 people in Calgary with this level of training.

I never thought my radiated muscles would even be supple again...but I was Wrong.  Dee has worked miracles on the scar tissue - especially on the left side where I had so many lymph nodes removed. 

There was a large lump of scar tissue in my arm pit that has disappeared.  The actual scar on both the left and right sides are no longer adhered to fascia or muscle anymore, and many of the muscles have been separated from the muscles/fascia they were stuck to, and there is blood flow everywhere!

Now, when I massage on my own, the area actually STARTS OUT (mostly) supple.

This has been happening in 'layers'....how with each appointment, Dee goes deeper and deeper into the sinews and muscles around my shoulder, between my shoulder and my chest, along the side of my rib cage, in my armpit and under my arm, and all along the scar tissue on both sides.

My range of motion has no limitations any more, and I am now enjoying the deep water workouts at my local swimming pool.

So my dear friends, KNOW that you can achieve so much more healing, if you can find a massage therapist with the proper training.  The Proper Training can't be stressed enough....many massage therapists use far too much pressure, more than is necessary, trying to break down the cardboard that our muscles resemble after radiation.  It takes much more subtle work than that....a gentle touch, and I am constantly amazed at Dee's intuitiveness....sometimes when I look at her while she's massaging me, her eyes are actually closed, as she feels her way along a group of muscles, or tries to unravel a lump of scar tissue.

If you would like to see Dee, or chat with her, or if you want your massage therapist to chat with her, please let me know. 

Because of this successful massage therapy, my journey of healing has continued.

And though I've not opted for reconstruction yet, I got the coolest prosthetics that STICK to my skin....I'm glad I waited to get the prosthetics, because now, I wear them when I feel like it, and not because I am too self conscious to be seen without them.  And to be really really honest, I LOVE not having to wear a bra if I don't want to!  Technology is amazing isn't it?? 

Twinkly

badger

bumping up this thread (into active topics) with great appreciation to twinkly.

Marple

Thank you Badger for bumping this thread up.  I'd not seen it before.  Twinkly, I am very pleased and also excited about what you have shared here.  Your therapist, what kind of training has she had that has allowed her to be so great at her trade? Oh man, I wish I lived in Calgary although having said that.....aren't you under a blanket of snow? :P

badger

hi Sharon, thanks ~ I'll bump it up again.

Ginger48

Badger- thanks for the bump. I have never seen this thread. It should definitely not get lost in the mix.

badger

hi Ginger, thanks ~ I'll bump it up again.

twinkly

Hi everyone....!

Badger, I'm so honored you are bumping this thread so others can benefit by it. 

Sharon, I would be happy to forward Dee's information to you, so you can contact her and ask questions/advice about the unique massage therapy she has enriched my life with....just let me know. 

And Ginger, you are absolutely right....knowledge is power!  

badger

hi Twinkly, this thread was SO helpful to me two years ago when I was facing BMX.  I owe you a debt of gratitude for taking the time to chronicle your experience.  ((hugs)) to all

badger

Time to BUMP this thread into active topics again!

badger

BUMP

badger

bumping up this thread for Gemmy1

twinkly

Badger...your 'miles walked' is inspirational! 

....move forward from this place....this is exactly what I needed to hear - thank you!

badger

Thanks, twinkly, I've walked 350 miles since June. 

2,856 miles walked since bilateral mx in Feb. 2010.

There is life after BMX.  You gave me hope.  Namaste!

badger

bump

badger

bump for Pattszy

MauiGirl

Thanks for bumping this up, Badger!  I would never have seen it otherwise.  Will be having a BMX in 2-3 weeks, and found this information invaluable--Thanks, Twinkly, for sharing!

badger

Good luck, MauiGirl!  If you haven't already, please consider joining the Feb 2013 MX thread.  No support like those going through it with you at the same time.

BTW, for anyone getting drains pulled, remind your doc to OPEN THE PLUG ON THE DRAIN BULB to reduce the suction.  It will come out easier and hurt less.

badger

bump for bobogirl ♥

Chinneymae

Twinkly, your story is an inspiration to me. I've just been recently diagnosed with IDC left breast. I have chosen to do BMX due to ADH removed from right breast in 2006. I have been cramming my brain with research, talking with others, and trying to gain as much knowledge as possible to get prepared. I see on hear where a lot of women know the stage of their cancer before they have surgery. My surgeon said there was not way to tell until the surgery and pathology report comes back. Is there a reason for this?



My husband and I have learned so much from your story. You are a wonderful writer.

Thank you for sharing.



This site is the greatest.

twinkly

Hi Chinneymae,

thanks so much for your kind words....yes, this site is so amazing, and everyone is so generous with sharing their stories.  It's so good to hear of your research, and how you are becoming as prepared as you can.  I sincerely believe this is the very best we can do for ourselves. 

Regarding the staging of the cancer...when they did the core biopsy, I believe they were able to guage the aggressiveness of the cancer's growth simply by putting the cells under a microscope, but it wasn't until they had removed the cancer that the pathology confirmed the findings of the core biopsy.

I hope you are doing well, and getting through this with as much peace in your heart as is possible.

badger

bump for mermaid18 

Enerva

Thanks Winkly, I love you for these posts you gave me so much hope

mermaid18

Thanks Twinkly and Badger! Whew!

Widdershins3

Another thank you for all the bumping, since I needed to read this and might not have found it if it was buried.

I've taken away a huge amount of information from this thread and am feeling much better about my decision to go with the bilateral surgery. Thank you! You wouldn't believe the resistance I've gotten to going bilateral--both from surgeons and from people in online forums. For me it wasn't a difficult decision at all to get both the cancerous and the ticking time bomb breasts out of my life for good. I know my own mind pretty well at this point and am 66, so they were non-functional body parts to me. Aside from wanting immediate reconstruction so that people wouldn't stare (and I'd feel more balanced), it felt completely rational--close to having an appendix removed if it's grumbling.

But a lot of people seem to be really upset by the very thought of having a non-cancerous breast removed, which is odd to me. That breast had had a bunch of the precursor spots since 2004 and the thought of waiting for them to do what the right ones did and turn fully cancerous, then going through the whole surgery and painful recovery AGAIN seemed illogical to me. I don't mean to disparage the choices made by other women at all--I'm just 100% certain that, for me, the bilateral mastectomies were the only choice that I could live with.

And now that I'm having complications from drain tube damage and still on pain pills 3 weeks out, I'm so glad I'm getting this over with in one go instead of two. And I'm thankful that you and the other women here who went before me were so willing to share. Your posts have resulted in a whole page of notes for me to research and think about, which is priceless.

twinkly

Hi Widdershins....so good to hear from you!

I'm so glad you didn't let the opinions of others drown out your own voice.

I think this happens when we are still in shock over the diagnosis, and are being rushed into making decisions now! now! now!

I never understood this...it's not as if the cancer just 'appeared' in the last month or so....its most likely been there for months/years, and everyone needs time to let their heads catch up with their hearts, so to speak.

I pray you continue to follow your heart, and that you get through the coming months as quickly and effortlessly as possible.

Big hugs!

twinkly

Well my dear sisters....it has been a long journey so far, and for me it isn't over, as I reluctantly move to the stage IV boards.  I will continue to document every step of this new journey in hopes that my experience may help someone, and also to be able to reach out and ask for help.  I'm still in shock I think....

AZ85048

twinkly - I am so sorry!  As I read your thread from the top, I cried and I smiled and I nodded my head.  Some of it didn't apply to me, but the situations that did were so honest and raw.  (Maybe you should consider publishing your diary.)  And then I got to today's post and I cried again.  Cancer just sucks.  I hope you can find comfort in the fact that this diary will help many women and I for one, thank you for writing it.

twinkly

thank you AZ....kind words always seem to make me cry so easily, but it seems those are the tears that heal the most