a double mastectomy with tissue expanders successfully completed

Hello Hello all and Happy New Year to you all.

I got home yesterday and am doing fine. Here is a a very waffled and probably boring summary of what happened this week:

I was strangely ever so calm before my op apart from the fact I was so worried they would cancel on me due to my swollen glands and cold. I was first to be operated on and was rushed to get into my gown and wheeled off. I recomend New Years as it was very quiet. Only 2 ops max that day.

I think Mr Macmillan my surgeon thinks I’m a bit silly as when drew on me in marker pen I said I loved magic markers and he asked if i had any questions or concerns I asked if I sneeze during my op would he make a mistake and cut the wrong bit off!! The answer was under anasthetic you can’t sneeze!!

I woke up with an incerdibley itchy nose which is a side effect of the morphine. I was in no pain and only pressed my morphine button out of curiosity. The worst thing was the canular thing in my vein, yuk that really made me cringe!! I had one small hallucination after anasthetic and felt a bit edgy and paranoid. I soon decided to remove the oxygen and morphine so they could remove the canular out of my hand. I think they were suprised when they asked if I wanted a bit of soup and I said no i want Fish mash ketchup and pudding! I get so grumpy without food!

To be honest I felt pretty good day 1 and 2 but found it hard work being unable to move especially as I got my period the first evening! Not very dignifide on a comode when you can’t pull your pants up!!

My ward was a bit hard work as I had 5 old ladies and 2 had lung and breast cancer and did lots of pukey cough ups all night. 1 had one of those voice box things and couldn’t breath. They were all very sweet and we helped each other out but it would have been easier if there were some younger ones to keep me company! Would have defiantely prefered a private room but was fine.

I was quite disappointed with some of the nurses. Some were nice but I felt they make you feel like you aren’t a human being and really lacked any kind of warmth and empathy. It would have been nice if they had come to ask how I felt or for a chat but only a couple seemed like that. It was really quiet New years so no excuses that they were too busy! I had to do everything myself as I felt everything was too much trouble for them. It is so frustrating when you can’t do the simplist of things. I didn’t see the physio until day 3 but had done heaps of stuff already. I asked one nurse if she could pour me a glass of water as it was full and heavy and she said do it yourself its good for you!! The physio said that was completely wrong to lift something that heavy one day on from my op!! Don’t get me wrong they do a fab job and some nurses were amazing but some have a serious attitude problem! it was a decent ward but I’ve never been in hospital before so do have alot of gripes!

I lifted stuff very soon after the op and showered and dried my hair day3. I put my make up on too. Everything takes ages to do but felt It made me feel better. I had 4 drains in so it was hard to balance everything especially changing tampons!. I put my drain bags inside poly bags and hooked them up so I could sit down and shower and blanced my shampoo etc on the side.
Day 4 I got tired of soggy mash and gravy and escaped with my friend to the other side of the hospital,went outside and went to a canteen.
I woke up with really bad back ache and lower abdominal pain and it was weird i just burst into tears at 6am! My last morning I woke 4am and burst into tears again. Very strange, maybe from the anasthetic?

Anyway generally I feel fine. I am very relieved and pleasantly suprised at the results of the op. I have already been slightly expanded too. It feels very numb like having a dead arm and my chest feels very tight.
The worst thing is all the antibiotics and antiinflamitries make me feel slightly sick and give me tummy ache. I got one changed to ibuprofen and it has improved. Lio

Yesterday I decided to come home with 1 drain left in as I seemed to get less and less sleep due to the poor sick ladies and noisy nurses. I overdid it the day before and felt exhausted and dizzy. Not sure if when I come of the drugs I will feel better?
I had a good nights sleep and love being at home. My cats really missed me too. They hope to remove my last drain tomorrow.
I even managed to briefly go to Next on a retail park and buy a button up jumper! Must be ok!

Anyone wanting any advice on having this surgery how it feels etc I will gladly try and help

Take Care

Katie XX

Hi Katiecat!

Well done on making it through the first bit…

Your physical experience sounds a lot like mine - I had a bilateral mastectomy and tissue expansion reconstruction back in Aug 07 - I’m booked in for the start of March for my permanent implants to be fitted.

All the advice I can give is: Make sure you do your exercises!! They should have given you a leaflet that folds out into a poster (breastcancercare.org.uk/content.php?page_id=665) Unfortunately the pictures show women who have had a single mastectomy - not good for those of us who have had them both removed! It does take more time, but the benefits are soooo worth it. At first I felt very stiff, like I had big rubber bands ready to ping… this will get easier. Just make sure you take a couple of painkillers about a half hour before you do your exercises…

One excuse I have used for pampering myself a lot, is that moisturising cream makes it easy to massage any areas that may be a bit tight or painful… I got my husband to help me with the bits I couldn’t reach (under your arms and the back of the top of your arms can be tricky) but now I have full range of movement!

Now my implants are at full capacity, I find it difficult to sleep on my side without extra pillows for support. When you go for your infills (I called them my Pump Up Sessions) take a few painkillers about a half hour before you’re due in. If you have the same as me (expanders that have a small magnetic valve on them) it won’t hurt when they fill them, it just gets very tight and I found it difficult to take deep breaths at some points. Just take it bit by bit, the infills should be at YOUR pace, not your consultants. I was very lucky, my consultant used 50mls each time as that was just enough for me, yet apparently some use up to 100mls to speed up the process. I feel like there’s a small heavy person lying on my chest constantly at present, but I can see light at the end of my tunnel and it’s all for the greater good!!

I am more than happy to answer any questions you may have about the journey you’re on, I had the support of many women on here when I was at the stage you are at present, and I found it invaluable.

Take care
J xxx

Hi J

Thanks for all your advice.

I am now 3 weeks after my op and doing really well. They expanded me a week ago last friday and I think it was too soon as I experienced more discomfort than I did straight after my op. Now a week on I feel fine again. The worst thing is the horrible neuralgia/shingles pins and needles type of feeling under my skin that gets worse as the day goes on. I am getting used to it but would do alot more walking if it wasn’t for that.

I managed to sleep on my sides at last 2 days ago which feels much better! I kept getting such bad back ache every morning. I like to move around alot when I sleep.

I went into town yesterday and at first felt quite paraniod that people would bang into me but carefully watched where I was going. It was great to get out of the house!

I was quite naughty from the start as I lifted stuff, dryed my hair day 3 and generally have done alot of normal stuff. I have done the excersises and more that I have made up and have full movements over my head. I think pushing myself was definately a good thing. I feel generally quite normal. I just hated the way the fills or expansions make me stiffen up again. I had 50ml last time and may try for 70ml to100ml if I can bare it.
I am very small so am going to a fullb/c cup so may not need too many fills.

I am also pleased with the results even now so I’m sure they will look great when finished.I just hope the next op goes as well.

I have had some great support from here and mainly the other forum I use. It has really helped to talk to other people that have been through the same.

I hope your next peration goes really well and thanks

Take Care

Katie xxx

HI I have to go in for bilateral mastectomy and tissue expansion reconstruction, on the 5th Feb and abit worried about it I am 25.

Hi Misty

I am so sorry you are going through all this at such a young age… I feel too young and I’m 33 (very young 33 though!) I hope you have alot of support from your family and friends

This is the 3rd time I have written this. dam computer spent about half an hour!!

First of all you may find it useful if you see the post titled ‘brac1 gene’ and my reply from Nov 10th. There is a good link on it.

Please don’t worry this is the worst bit. The worry before hand is far worse than anything and you feel as though your whole life is on hold!

As for the operation itself remember you will be put to sleep and when you wake up you will probably feel no pain as they give you heaps of morphine. you feel like you have a very tight giant elastic band round your chest/ someone pushing on it. This may make you feel a little breathless but you can breath really and will be given oxygen anyway. I felt no real pain just discomfort as your movements are limited.

As much as I slagged off the nurses they were fine and some were nice.
I just felt frustrated that I couldn’t reach much and everything took so long. I did shower on my own day 3 sitting down but that depends on your dressings. I was literally glued together with no bandages at all! you will wake up with possibly 2 drains from either boob that drain away all the blood and fluid from the wounds into little plastic containers. The hospital will probably give you little fabric bags that you wear on your shoulders to put them in. When I showered I put mine in plastic carrier bags and either hooked them over my wrists or on any hooks available. You feel so much better after a shower and it eases the tightness. Ask them to help if you need it. I burst into tears a few days after and I think the anasthetic effects everyone diferently.

I wasn’t shocked with my new boobs as they had already expanded me and my scars weren’t too bad. I had tiny boobs to start with so maybe it was easier. They sit very high up and are very hard to start with. Think of them as work in progress!

Here are some tips:

If you have a cannula (a plastic port in the vien in your hand) and it is no longer being used ask them to remove it as it really aches after a while)

The antibiotics and antiinflamitaries can give you really bad tummy ache, dizziness etc. Don’t panic it isn’t an infection! I got them to swop one for ibuprofen and that helped.

Coca cola and salty crisps seemed to make me feel better if I felt a bit rough! Think hangover food!! My husbnad got sent for a big mac meal one night!!

Things to Take:

Front fastening pjs(zip or button down)- I took 3 pairs: 1 velour one, a silky one which was good if you get too hot and a button down one.

A soft towel

freshen wipes / flannel

moisturiser lip balm, and handcream

Eyemask and ear plugs (helps heaps)

Ipod

books/mags

mouthwash

don’t forget to remove all nailpollish before the op and wash with unscented soap and wear no make up before your op

I borrowed a hairdryer from the nurses

slippers and bed socks

I really hope this helps. Just hang in there for the next few weeks and try to keep calm. I know it is so stressfull but you will be fine.
If I can help answer any questions please just ask. Are you on facebook?

Take care and Good Luck

Katie xx

Hi Misty

I don’t think I can add anything to what Katy said - it’s brilliant advice. I bought one of those cushions that has millions of polysterne balls in it and it was the best £4.99 I’ve ever spent. You can get uncomfortable at the worst moments, so having all the comfort and luxury things to cheer you up, quite near you, is probably the best medicine you could get. I too got quite upset a couple of days after the operation, but this was a mixture of the anaesthetic wearing off and the ultimate relief that the operation was finally over. I had a good old cry on one of the nurses for about an hour, and it felt brilliant afterwards. Don’t worry if you’re crying all the time either, perfectly understandable and we’re all doing it… so don’t beat yourself up if you get upset a lot.

I was petrified before I had my bilateral mastectomy, but in all seriousness, the operation was the easy part! All you have to do is close your eyes and have a long restful sleep - it’s the surgeons that have to do all the hard work!!

Due to money issues etc, I went ahead and got myself some media coverage - My husband and I are in this month’s edition of Cosmo (the pink one with J-Lo on the front) if you want to read our story - it might help a little?

There are plenty of us on this forum who have been through what you will experience on 5 Feb - and we are *more* than happy to help you through this and answer any questions you may have. Feel free to private message me if the questions are a bit personal - I don’t mind.

Katy - I am aiming for a full C cup, and I think I’ve got around 550mls in each now… it’s tight but just bearable. Roll on March I say!!

Hope you have a good day ladies xxx

hi misty

will be thinking of you on the 5th. I had mine done on the 16th Jan, 2 weeks after katie. Where abouts are you living?

Michaela x x

like Katie have posted more on BRCA 1 site

Hi Misty

Hope you are doing ok.

Good Luck for the 5th. Hope to chat to you when you’re back.

Katie xx

Hi J

Just wanted to say, my first trip into town today on my own, and it was mainly to buy Cosmo and read your story.
You have a different inherated gene to Katie and I but with the same outcome. Sending you wishes, and i loved your wedding photos, looks like you had a lovely day and have got yourself a good man there, not many of them around :wink:

Michaela x x

Hi ladies
I have been reading your comments with interest. They have just discovered I am BRCA 2 positive after having breast cancer three years ago. I am going down the surgery road now, oophorectomy and bilateral mastectomy and wondered how long it all takes from referral to surgery as I just want it all over and done with.
Take care
Annierose

Hi Annierose

Sorry to hear you had cancer and have brac2.

You may have seen my previous posts, I am 33 & Brac1 too. I lost my sister to bc last march age35 and my Aunt had Ovarian cancer in her early forties and died just before 50. I had my double mastectomy and tissue expanders 31st dec. It is just over 6 weeks on and I’m doing great. I am actually very pleased with the results and enjoying having a bigger bust! I was a small 32b and now I am at least a full 32b and hope to go to a c. It is great filling bikinis!!

Below is a bit of a time scale of my experience. I thought it may help. Sorry if it bores you!!

July 2006 The genetics team contacted me as they had seen there was bc and ovarian in my family

Feb 2007 (approx)Then my sister agreed to be tested as she had bc. She had blood taken about feb 2007.

July 2007 We got her results in and had to meet a genetics counsellor to dicuss whether I wanted to be tested. I got tested then and there.

Sept 14th I found out that I was brac1 when I met with genetic counsellor again. We weren’t very impressed as we felt she gave me the bad results and said nothing. We made an appointment oct 3rd with the Breast care nurse and surgeon.

Oct 3rd had appointment with breast care nurse and surgeon and they recommended surgery before starting my family as they believe mammograms and Mri’s aren’t affective enough.

Oct 12th met with breastcare nurse and surgeon and said I wanted to go ahead with surgery. 2 weeks after tried very hard to contact them again and book a date for surgery. Got private quote and dates and NHS dates.

Nov 2nd BC nurse and surgeon himself called me and booked my operation for 31st dec. they initially were looking into the new year but I was desperate to get it done as soon as possible so my life could get back to normal next year. New Years was free so I took it.

Dec 31st double mastectomy and tissue expanders sucessfully completed.

Current - had 2 tissue expansions and next due 29th feb. May not need any more? Surgeon has said next op will be early summer may/june

I hope this helps.

It took 3 months from my results to surgery but I had to push them hard and keep calling and e-mailing. Be persistent. Speak directly to the surgeon as the genetics councellors seem too slow!

Good luck

Katie xx

Thanks for that Katie, I will certainly keep pushing as I feel, as we all do, that my life is again on hold. I have an appointment to see Breast Care Nurse and Consultant at end of March and I am counting the days. Although unlike you I am looking forward to being a good few sizes smaller.
Take care.
Annierose

Hi Annierose

Best of luck with your appointment.
I know what you mean about your life being on hold. I felt like that before my surgery and found it really stressfull. I actaully really found the sugery absolutely fine and the recovery pretty easy. It is just a huge relief! I will be having my Ovaries removed after I have had a family before 40, so have about 7 years to wait.

It’s funny that we all have different requirements! I have spoken to a lot of ladies that have now got smaller ones and are delighted.

Best Wishes

Katie xx