Upcoming elective double mastectomy

Posted by Jenniferk on 27 Jan 2014, 08:35PM

Hi there,

I have a horrible family history of breast cancer so I have taken the brave step and have decided to have an elective double mastecomy. This is happening next week. If anyone has any tips that they can give me pre and post surgery I would be most grateful.  Many thanks

 

Comments

Surgery

pinkdancer45's picture

You certainly are one very brave lady. It's a huge step you are taking, but a very wise one. Mine was a lumpectomy so I'll leave the advice to those who have the mastecomy experience, but I just wanted to wish you luck.  You are doing the right thing for yourself and for those who love you and want to keep you near.

Jenniferk's picture

Thank you so much for your words of encouragement pinkdancer45. I know it's the right thing for my family and I as I want to be around to see my girls grow up unlike my mother, but it still is a little scary!!  :)

Some mastectomy tips

ElizabethRose78's picture

Hi Jennifer.
I had just a single mastectomy 6th December 13, so nearly 2 months post. I had a Portacath put in for chemo which temporarily 3-4 days restricted movement of my arm on the other side. my tips would be
- front opening shirts. I didn't own any and hit the op shops (as did my mum, aunt, sister)
- front opening bras, soft cotton ones and ask your surgeon how soon you can wear them post. I had them on the day after.
- get Breast nurse to order you the BCNA kit with free bra and soft inserts
- take your panadol regularly
- monitor and let nurses know asap any changes to your bowel movements
- lipstick, good hair and good posture for first time you see yourself in the mirror. You are an Amazon!!!! Wear those scars with pride.
- Do your physio exercises and try to see a physio a few times post surgery. Oh the bliss of being able to lift arms above your head!!
- move your essentials in kitchen/laundry/bathroom to below shoulder height.
- ask your physio/surgeon whether/when you can put weight through your shoulders. I got very very good at bum shuffling around in bed and using my Abs to get myself out of a chair.
- make friends with your drains. Alternatively make them the scapegoats for any rage. Funnily enough I didn't mind them when I was in hospital, but once I got home I felt they were invading my life.
- Get used to drying and dressing yourself taking twice as long. I found this the most frustrating part of any day until.I.realised I wasn't in a hurry for anything, so I used it as opportunity to.practice mindfulness.

Jenniferk's picture

Thank you ElizabethRose78, I will take on all of your advice. It's good to know that we are not alone  :)

Hello

Robyn W's picture

I think you are very brave:). My tips for you are: front opening pj's,and some VERY LOOSE cotton singlets to wear under them,cause they are softer on the skin.You can pull the singlets down,not up over your head.A big boomerang pillow for propping yourself up in bed,cause you can't sleep on your side for a few weeks. A plastic chair to put in the shower,so you can take your time,and if you are a bit unsteady,it gives you a bit of security.Put things at waist height that you might use every day,because you won't be able to stretch up at first.Things like coffee,tea,in the kitchen etc.DO THE EXERCISES YOU ARE GIVEN,! This is the most important thing I think,to regain full movement of your arms.All the best xoxoRobyn

Jenniferk's picture

Thanks Robyn, great tips  :)

Welcome

Merlins mum's picture

Welcome to the group.
My mastectomy was a single skin saving one with immediate reconstruction with expander for later implant. What the girls have said is spot on. It takes time to recover from the anaesthetic and surgery so be kind to yourself and do nothing except laze around nd take gentle walks when you are up to it. Pandol didn't cut the pain for me so I used Tramadol for the first 6 days. I can't take codeine, endone etc. it is important to keep the pain relief up and you may find it all makes you constipated. Coloxyl or similar last thing at night will be your friend also!
Let's know how you go. You have plenty of support on this ride.

Julie

Jenniferk's picture

Thanks alot Julie, great tips, support is what I really need at this point in time as it's starting to become scary now!!   :)

Pain relief

ElizabethRose78's picture

Sorry, I realised I didn't want to advise on stronger pain relief because it depends on your surgeon/anaesthetist and what they prescribe. I did have more than Panadol.
I had Lyrica as my lump was a painful one that had got into my pec muscles. Lyrica is about preventing neuropathic pain. I took it for 6 weeks. Early on when I missed a dose I had a fair amount of phantom Boobie pain. I've just come off it in the last week and a half and there's been no problems. The theory with pain management, I believe, is don't let the neurological pathways develop in the first place. Once they are there, they are harder to get rid of. So no trying to be a matyr or a Hero!
The opioids (codeine, Endone etc) will clog up your bowels. I'm still on five prunes a day, but have been able to drop the coloxyl (I was way too excited when I discovered you can buy a kilo bag of pitted prunes) Make sure you are clear about the side effects of whatever is prescribed. E.g Lyrica does tend to make you drowsy.
And yes, enjoy lazing around! Books, DVDs. Gentle exercise whenever you can.
If you have full axillary clearance, make sure you know all about lymphedema and self lymph massage (physio or OT should teach)
Meant to say, you are so brave! Good luck!!!!
Liz

Jenniferk's picture

Thanks again Liz  :)

Double mastectomy

tan_g's picture

Hi there Jennifer.

I am 37, I had a bilateral Mastectomy in March 2013. (not elective)...but still the same procedure Im guessing.

My advice....ummmm, not too many visitors in the first 4 or 5 days as you will be uncomfortable, and needing the rest.  Loose fitting clothes that open at the front or are large and loose to get over your head, as your movement will be restricted for some time.

Yes, coloxyl like another lady said, its a lifesaver, because all the medication will constipate you and thats terrible on top of the other surgery pain.

Best wishes.....xxxx

Jenniferk's picture

Thanks alot  :)

Double Mastectomy

Yoga nut's picture

Hi Jennifer I had a double mastectomy 10 weeks ago and now in the middle of chemo ....the girls have all given excellent advice and so I won't double up ...one of the BEST things was my dear friend coming in and blow drying my hair after the nurses washed it because I couldn't lift them up high enough to do that, Felt like a million dollar movie star afterwards !! Also my sister massaging my legs ...bliss xxx all the very best to you :) Karen

Jenniferk's picture

Thanks Karen, that sounds like a great idea, both the blow dry and the massage.. hope you are recovering ok and all the best to you too  :)

Ebb and Flow's picture

Hi,

Hope I'm not too late in responding. The ladies who posted earlier gave excellent advice. Are you getting implants/expanders at the same time? I'm yet to go through this so I don't have any experience advice but the lovely lady who was getting elective mastectomy/expanders/reconstruction while I was in hospital getting cancer mastectomy had trouble with expander slippage. Her doc wasn't concerned as the tissue had to be stretched no matter where the expander was but she was uncomfortable and in pain with expander moving towards her armpit. Maybe post again with reconstruction header if this is where you are going. My only comment on mastectomy is that it's a breeze compared to chemotherapy but its unlikely that you will go down that path. 

Spray dry shampoo was what I really needed in hospital. You can't lift your arms to lather in the shower for a while so this was indespensible to me.

Good luck with everything, you are incredibly brave.

Take care, xxx

 

Jenniferk's picture

Thanks ebb and flow, at this stage I have just had the mastectomy with reconstruction to come in a couple of months time.. I am at home resting comfortably and enjoying the pampering , my procedure was a success..thanks to everyone for their very helpful advice


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