About to go into hospital for Bilateral Mastecomy, what can I expect? What can I tell my children? 10 hour operation, how will I feel?

[cookiemonstress]

Hi
I'm shortly about to go into hospital for a risk reducing bilateral mastecomy with reconstruction (DIEP Flap). It's a 10 hour op and will be performed at St Thomas'.

Wondering if anyone has experience of this op? Would be useful to have some anecdotal experience of what I can expect, what's a realistic recovery time, what can I expect to feel like after 10 hour op.

Also does anyone have any advice as to what to tell my girls (3 and 4) and how to prepare them?

I am getting support from Breast Nurse but haven't spoken to anyone directly about it, so a bit of info from the 'horses mouth' would be v useful.

Thanks!

hi cookiemonstress - have you looked at the breast cancer care forums ? -there are women on there who have had bilateral mastectomies and reconstruction and would certainly be able to advise- plus ideas on how to tell your dcs...I'm afraid I only know about breast conserving surgery..will find a link for you...

here

Hi Cookie, I'm probably not quite the person you need, as I have had a right side mastectomy and lymph node clear out, without reconstruction.

But didn't want you to go unanswered.

As far as telling your girls I would go along the lines of Mummy has to go into hospital for a little while, and you'll be sore on your chest, and feeling rather tired. Keep it as simple as possible, so they know what to expect.

You will feel pretty groggy for a couple of days after that long an op. I was sent home fairly quickly with a wound drain, and visited daily be the district nurse, to have my dressings checked.

My wound began to heal enough to remove dressing after about two weeks. But there was soreness and stiffness in the area for quite a long time after. It can be useful to ask to talk to a physio at the hospital. But you'll probably be given exercises to do.
I have friends who have had reconstructive surgery and the results seem very good.

I don't know if any of this has been much use, please feel free to ask away if there is anything you think I might be able to help with.

A helpful place for you might be the Breast Cancer care forum, where I'm sure you will find women who have had the same surgery. There is also another charity for women who have had reconstructive surgery, but the name escapes me. As soon as I remember I'll post it for you. The very best of luck for your operation.

Ah I see MAS has given you the link, while I did my usual slow typing

Just remembered its 'keeping Abreast' but have just googled it and realised it is local to my area/hospital. So, sorry, not much use I'm afraid, although they may have useful stuff on their website.

A friend of mine had this done and was very pleased with the results, including aesthetically. There was a good article somewhere - I'll have a look

here it is

Sorry I can't offer advice but just wanted to to wish you and your family well. I hope you make a quick recovery.

Hi

Thanks so much for responding. The article was massively helpful, it could have been written by me, I could relate to so much of it.

I'm not looking forward to the op and it will be a big change of body image for me as I'm currently a 32ff and after the tissue reconstruction will only be c cup at most, but more likely a b cup (depending on how many cakes I can eat between now and then!) but I am sure I will not have any regrets.

I have been in touch with breast cancer care but they as yet don't have any support/info set up for women with the BRCA1 gene who are having elective mastectomies.

Kurrikurri, I hope you have a clean bill of health now and I'm sorry you've had to go through the op at all. Thank you for your words of support and I wish you all the best.

hi cookiemonstress. my sister is a brca2 carrier who had a double elective, she is part of support group, i'll find the details for you, whereabouts in the country are you?

best of luck. my sisters op went very well, her recovery was good but did take a long time. have you set up as much help as you can for yourself after the op?

Hi HerHonesty. Thanks so much for your response. I'm based in south london. Would be v interested in the support group details. Do you know what type of reconstruction your sister had?

I have got some help for after the Op so I'm hoping to get a few good weeks in of totally recuperating before that runs dry. The hardest thing will be letting go of things.

Hi OP, i didn't have mastectomy but in novemebr had elective breast reduction surgery ( mine was a big job!) i had 1.5 kilos of tissue removed form each breast, it took 5 hrs. I was wacked out for a good 2 weeks afterwards from the anaesthetic, i told my girls aged 5 and 10 that mummy had " sore boobies" and wouldn't be able to be hug them for awhile. We practised arms length hugging prior to goign into hospital and i mad upa special kissy routine for them instead of hugs this involved us trying to kiss from as far away from each other as possible without them falling over, we kept a score and awarded prizes ( sweets) for the furthest kiss of the day and the most artistic leaning in effort etc, this kept it all light and funny instead of htem worrying. My boobs still hurt and ache now ( 9 weeks later) but i have had serious post op infections so that hasn't helped

should add good luck !

Hi there, Ruby gave me a shout to come nad chat to you.

I had a bilateral profilatic double mastectomy with impant surgery on 28 Feb this year, when my little ones were 3 and 2.

The surgery was easy actually, I went on a morphine pump after and the first night was pretty much out of it.

I opted for the impants as my cousin had the flap one and recovery was hard, she had a 3 year old and a 15 and 16 year old. Her eldest helped a lot, but you can not lift for 6 weeks, so it was hard with her little one.

Now I was a G cup, so again was going to be a lot smaller and looked flat as a pancake with the dressings on. It felt like my chest had electic bands round them and was very unconfatable,

I was not prepared for the drains, they are the worst bit and I hated them.

I have to say things went from bad to worse for me and I had major, major complications, but so not want to scare you.

So let me know if you want me to carry on!!

Have no advice Cookiemonstress but also wanted to wish you luck and a speedy recovery.

second the electric band feelings . make sure you buy plenty of soft cup sports bras with room for dressings. i bought 2 but found had abit of leakings so really need 3-4. the front fastening nursing bras most comfy .

Yep, I meant an eleastic band

Hi Cookie

I had a mastectomy in 2009 at the same hospital with reconstruction, contact me and I'll give you details.

Hi ladies, thanks again for your responses. So so lovely to have your support.
Teamonster I think I remember reading your story a while back, am I right in thinking that you have to go for a second round of action now? I hope things are working out for you?

I've been on that american FORCE website today (facing our risk of cancer) and am starting to ask questions as to why I've opted for this reconstruction because they all seem to opt for implants! My mum had problems with her implant though which is why I thought I'd give the DIEP flap one a whirl but as the op looms suddenly the shorter op seems more attractive!. I'll be going from ff cup to an approx b cup, so a big change.

Marley, I've tried to contact you but don't seem to be able to manage it. I'd love to hear the details if you have time. You can reach me on [email protected]
if that's easier?

Ruby, thanks for the feedback about St Thomas'. Good to know about parking. I have to say that the experience so far from Guys and St Thomas has been amazing. If the plastic surgery ward has a riverfront view, that will be the icing on the cake!

Would be useful to know how people felt in the first week after the op and what should I pack? Is it sports bras that I should be buying? The nurse told me to bring a regular bra but I'm going to be such a different size and all mine are underwired, so I'm thinking I need to bring some different ones with me (kicking myself for binning the breastfeeding ones but they had seen better days!)

Thanks again everyone. xx

Hi Cookie

The results from Flap are fantastic, my cousin looks and feels great.

Yep, I used to be TheMadHouse. I had issues with the implants and then deveopled Sepsis, which is really very rare.

I didnt have to wear a bra post surgery, I think it depends on the surgeon and how you are strapped. I found vests a real help, used lots and PJ bottoms and tops with buttons. Nighties are not so good as the drain tubes pull them up.

Right I do have some advice on the children though. You should be honost with them, tell them what is happening in very basic terms. We told the boys mummys boobies were being taken away as they were not well and new ones going on in their place and that I would be very sore.

We implemented bedtime stories in our bed with one boy each side. We started a couple of weeks before and got into a routine. We also did a small toy, or book or something for the boys each time they visited. I went to Sainsburys and bought lots of little bits in teh sale play dough, etc, so that they were kept busy

I wish I had know exactly how yucky thdrains looked to prepare the children. Maxi was obsessed with them and taking readings etc, but mini was scared. I would take a small shilder bag to pop them in.

Things for you to take in to hospital:

Facial Wipes
flannel
nice cleaner
Large towels
eye mask (it is never dark)
Pillow, getting comphey is hard, A V pillow is a boon
I found my ipod a lifesaver, I down loaded a novel and also some meditations too and when I was asleep DH played bewelled
I couldnt really read books as my arms were sore, so light magazines.
Slippers which are easy to slip onair can also be an issue, as you can not raise you arms very high initially.

We did lots of snuggles with the boys, told them approx how long I would be in, in the end I tool them with me to all my appointments as they developed a fear that I would not come home - we were very lucky in the we were given access to a child develoment counciller.

I also put homestart help in place, which was wonderful and out helper has become a family friend that we see each week.

I went in adn had another bout of surgery (but under local) at the beginning of Novemeber to tidy up the scar tissue and it was much easier secoond time around.

I think you need to be realistic about your expectations, do you know what you are going to look like, does SH truly understand how brutal the scaring can look initially, yes it fades over time, but it is the initial site that will be with him for a while.

Do you have support with the children, the more you follow doctors orders the sooner you will be back on your feet and looking good.

I have also been very lucky in that I received councelling from a charity speicalising in disfigurement.

I did the right thing for me and my family at the time we made the deicion. Would I do it again, yep, but possibly not for a few year until both the children were in full time education.

I wish you the best of luck and please keep us informed

hi there. sorry this took me a bit of time to get.

the stuff below sounds very formal, but i know my sister meets with her group monthly informally, email the nurse and see if she can get you in touch with some other mothers. it says it is for RM patients, but i cant see why they would be restrictive.

Best of luck, i think you are very brave and hope it all goes very well. dont worry about your little ones too much. they are very resilient and as long as they know you love them they will be just fine.

Contact & Information Sessions for BRCA carriers

Who is invited?
These meetings are for BRCA carriers who are patients of the Royal Marsden Hospital. If you wish to bring a support person with you, please do let us know and if we have the capacity they are welcome to sit in with you for the first hour of the session when we have our speaker. If we don?t have space in the meeting room the canteen is next door and they are welcome to wait for you there.

What is the format?
We will have a speaker for the first hour of the meeting. The speakers will address topics that are of interest to BRCA carriers. We will try to email the details of the speaker to people on our mailing list in advance. We do ask that people refrain from asking speakers clinical questions, as these can be addressed through your regular clinic appointments. For the second hour we will have an informal chat. We ask that any non BRCA carriers (e.g. friends, partners, relatives) have a cup of tea in the canteen next door for this part of the meeting, so people can feel free to discuss confidential issues. Depending on demand we may have some women only or men only dates. We will advise you of this when you book to attend.

Where are the meetings?
The meetings will be held in the Education Centre in the Cameron Room, which is on the ground floor.

When are the meetings?
The meetings will be held on Thursday afternoons, from 4-6pm, 6 times a year.

How to book:
Please contact Jennifer Wiggins on 0208 661 3375 to book a place for a specific date. If you would like to add your email to our mailing list please send an email to [email protected]. Please note we cannot correspond with individuals about clinical matters by email. If you have a clinical query please ring the department.

The dates for 2010 are:

4th March Breast Cancer Care Family History Services
Ms. Jackie Harris, Breast Cancer Care

1st April Living with Uncertainty
Natalie Doyle, Nurse Consultant, RMH,

3rd June Talking to Children about Inherited Conditions
Dr. Alison Metcalfe, The University of Birmingham

5th August The Genetic Reference Group- Getting Involved
Dr. Caitlin Palframan, Breakthrough Breast Cancer

7th October Risk Reducing Breast Surgery
Mr.Gerald Gui, Consultant Breast Surgeon, RMH

2nd December Treatment Trials for BRCA carriers
Dr. Tim Yap, RMH

Ladies, forgive my short response, I am dipping into this very quickly whilst I'm supposed to be working and I have a meeting looming!

I just wanted to say a big thank you for your responses, your information is invaluable.

Teamonster, the packing list and your advice re: the children is hugely helpful. I am so glad things are on the up for you. You sound very positive in spite of your experiences, you are a good role model for me ! I do have some help lined up, my husbands family live quite local, I have a few local friends, my daughters are in pre-school and school so I'm hoping we can get by. But I have briefed my husband that i shan't be rushing into resuming normal life initially as that could be counter-productive in terms of the longer term recovery. Better to be totally out of action for weeks than recovery to stretch into many months because I haven't taken it easy early on. Really good tip about novel and meditation stuff for Ipod too.

HH, thanks so much for tracking that info down. I'm going to email them today to see if I can gatecrash their support group.

I will keep you informed as things progress but thanks again. Your support has been really helpful.

Hi Cookie

I've tried to email you but it bounced back so will put some details here.

The list the TeaMonster made about what to take was perfect but I'd also add front fastening PJ's, really no point wearing a vest top or something like that as you'll be forever having to show your new boobs to doctors and nurses. I think on the first couple of days they check you every hour.

I had the DIEP reconstruction too on one breast (early stage breast cancer) and must say that I wasn't really prepared for how uncomfortable it was going to be or how big the scar was. I couldn't lay on my front for about a month but it was discomfort and didn't feel much pain apart from on the first day really. After the op you stay in intensive care for the first night because they need to check that your blood vessels are still alive and that it's all OK, bit pointless having anyone visit you that night because you'll be totally out of it on morphine. The next morning I was transferred to a regular ward and had the morphine pump for a few days where you just administer what you need. It does feel weird as your new breasts are quite hard. I stayed there for 7 days total.

When I got home I slept for about a week and needed someone to stay with me to help out because you can't lift your arms very high, lift anything or walk very fast. Make sure you do all the exercises they give you, they seem silly but really make a huge difference. Don't do any heavy lifting too quickly as you really will feel it.

It did all heal pretty quickly and only got a slight infection but nothing terrible.

Have you got the female plastic surgeon who likes to hug her patients?

Am happy to answer any other questions.

Hi Marley
Thanks v much for all the info. Really really helpful. I shall make myself do the exercises, I was lax with the old pelvic floor ones and now wish I hadn't been! How did you feel when you came round from the anaesthetic? I can't get my head around what a 10 hour op will feel like! Did you go the plastics ward after?

My plastics surgeon is Mr Farhadi and some comedy breast surgeon who favours a bow tie, whose name escapes me at this time of night. Mr Farhadi is def the sort who has a very ordered socks drawer, I find it a bit disconcerting when I meet him as he is clearly stratospherically clever (and part swiss-the attention to detail is boding well) yet not much older than me. I still haven't quite got over the sheer amount of appraisal that goes into their verdict on your breasts "your breasts are too big and droopy to keep your nipple, they will have to come off"!!

How are things with you now? Hope everything is on the up and your experience has been a one time thing.

I don't know what was happening with my email.!

Thanks again, I've got more info from this mumsnet posting than anywhere else.

Best wishes
xxxx