Hi everybody, I’m new here, but what a great place to get advice!
I’ve been diagnosed with invasive lobular cancer grade II end of July, had one lumpectomy then it showed that there are lots of cancerous cells left in the breast, so had to have mastectomy on left breast. Because it’s lobular and difficult to detect, i decided to have mastectomy on the good one as well - I was too scared of having something in there and not knowing… Anyway, I’m having both done this Tuesday and then chemo and radiotherapy and then only reconstructive surgery.
Just wanted a word of advice, how difficult is the operation, could you move your hands freely (I’m not having any nodes removed this time), was it too difficult phsycologically? At the moment all i care is to get better as I have a 5 year old son, all i want is to be there for him.
thanks in advance
I had bilateral mastectomy back in Feb and cancer in both sides so it was necessary. I didn’t do recon at the time (would have made the op too long as they did have 2 tumours breasts to deal with). I’m not sure how old you are but I found the recovery really not so bad and I am a wimp with surgery. I could reach and stretch a little within a week but high cupboards were out for about a month.
I’m 33 and was fit prior to the op which everyone says did make a massive impact with my recovery ie much faster than they expected.
I could stretch right up the wall as in the excerise leaflet within 2 weeks with no pain at all and I was very carefeul to make sure I didn’t take painkillers prior to the stretches so that if anything was wrong I would at least feel it
phsycologically having a single breast removed is hard enough but I actually found that at least everythings symetrical with a bilateral so I actually look a lot like a younger prepubescent me, not how I’d most like to be but not horrific either.
One other small saving grace with the bilateral is you can examine both sides of the body and if something feels odd (which it will to start with) you can at least compare with the other side, this has been a god send for calming my paranoia as It’s taken a while to get used to feeling the rib cage more and it’s not as smooth as you may think so you can easily wind yourself up with what’s this bump etc. If it’s the same on the other side it’s generally OK (although I did still check at my 3 month touchy feely check up).
It’s a shock to see yourself so differently but I honestly would make the same call again. while having a bilateral mastectomy is no guarantee of no recurrence it seriously cuts the risk down and logically how couldn’t it? It’s given me as much peace of mind as the chemo has so if sticking around is your goal then if you feel like me it’ll all be OK and you’ll adapt.
I don’t think I’m going to go for recon later though, I’ve left it open as an option but if I never sleep in another hospital bed that would be just fine If you know what I mean.
You will need to be careful with lifting for several weeks though as your chest will be tight. It felt like having an elastic strap around the rib cage to me and my arms were just weak. 6 months on (wow, to the week in fact) I can do most of what I used to except haul my entire body weight up. I can life the 25K dog over a style when I need to though so don’t worry long term, but no heavy bags for the first few weeks or you will set yourself back… trust me… I didn’t listen
Sorry you’ve got the blasted disease too. It’s a bit of a long journey this treatment but not as gruelling as I thought it would be.
I’ve done the surgery, the waiting for results, the waiting for chemo, 5 of the 6 chemos. so just 1 chemo, rads and hormones to go and you know what I’m still smiling (and you can’t put it down to the weather can you LOL).
Hi, I agree 100% with vertangie, I had invasive lobular in the left and invasive ductal in the right, so no choice, the surgery wasnt bad at all and I was only in 2 nights, but I had nodes out too, I think if I hadnt I would have been able to move about alot easier early on, but wrestling a chicken out of a mad terriers mouth after being home 2 days didnt help! vertangie is so right, no lifting, but do the exercises as your chest will tighten up. Im not going for recon either, personally feel that as she says - dont want to be in hospital again - especially voluntary!!! Hope it all goes well for you on Tuesday, let us know when you can. Im waiting to go for rads on 5th Sept, but not offered chemo, (wondering why now?!)
Hi.
sorry you are joining this forum, but rest assured the support here is amazing. I had lobular cancer in left brest,quite large so no option ,mastectomy. I decided to have a double didnt want leave anything to chance. It was not nearly as bad as i thought it would be. Had 13 nodes taken and 3 had the big c.I have to have 3xfec then 3xdocetaxel then 3 to 5 weeksof rads. Have had first chemo next one on thursday.Im lucky (touch wood) not been too bad so far managable. Hubbies finding it hard though. hope all goes well for you. Big hugs xxx
I had bilateral mastectomies and immediate reconstruction with silicone implants May 05, dx March 05. Very uncomfortable at first, felt as if I had a couple of bricks in my chest initially, but unfortunately I had an infection 3 days after leaving hospital along with a haematoma, so that might have been contributing to the discomfort. Was taken back into hospital as I was quite poorly with the infection, and had to have the implants removed, after which I had a couple of months whilst a patch of skin healed, then started again this time with inflaters put in and gradually built up over a few months, then had permanent implants December 05. I can’t say apart from the initial problems with infection etc, that I had any problems moving my arms or moving around. It was just more of a disappointment that things went wrong. My Plastic Surgeon thought it might have been the fact that I had only packed in smoking 6 weeks before surgery. My reconstruction is a bit wonky on the left breast where I lost the patch of skin, the right was fine. However, I have put on a little bit of weight about 10 lbs since a hysterectomy last summer and my implants are creasing slightly at the time where I’ve gained weight. I am going back later this year to have liposuction taken from one part of the body and have it filled into the creased areas. I would say however they look great in clothes and a good bra, the creasing is only visible when I’ve got no bra on.
Once I recovered from the infection and was back at home I managed to do most things and didn’t have any problems in that respect, but obviously you need to take things easy. It’s 3 years ago now. I have to say I sometimes regret having the second breast off, but only because that was the one I got the infection in, it’s sods law really, and that is the one that is wonky slightly. I had infiltrating lobular stage 2 as well, and had I not had the second one removed I would have probably been sitting on a time bomb, so I know I did the right thing deep down, but it’s not always an easy decision to make.
Sorry to hear another person having bilateral- I had mine with immed recon in May. There was cancer in one breast and pre cancer in the other so it seemed I was doomed. On the positive side, bilateral recons have a good chance of both sides matching and there is less worry about the cancer coming back (though this is possible).
I was in hospital for 6 days and had 8 weeks off work (I was lucky not to need chemo or rads). I was able to drive in week 6.
There are some extra considerations with bilateral surgery. Most of the information/exercises I was given were for one mx e.g. use your unaffected arm to carry bags - but with bilateral you don’t have an unaffected side! I found the only way to sleep was flat on my back/or half sitting up - both uncomfortable - a big help for me was a V pillow to get into a comfortable position. I was told not to raise arms above shoulder height for the first few weeks - it helps to rearrange things you use often at home on lower shelves. I needed help with nearly everything really, washing my hair, dressing, making a cup of tea,
Hi there.This website is brillant and has helped me no end.I had my [Right] Mastectomy and Recon,[with Inflater] 2 weeks ago today.Was in hospital for 7 days,as they had to remove more skin around the breast too,than they originally thought.My chest was SO TIGHT,but the whole operation went well.It was a week from hell,with my low blood pressure,low iron levels,was on Oxygen for 2 days,liquid morphine and loads of other drugs too.My drain was in for 6 days,also got my period early too.So yes it was a crap week.However NOW,I am ok,still feeling alittle tight,but able to move my arm ok.Very tired,but sleeping ok[on left side].Important to eat and drink well,rest and get Fresh Air.Mr Hussein was brillant,along with everyone else.Get my results this Thursday. Take care of yourself and stay strong.I am aged 42.
Hi there, I’m back from the op, thanks for all the messages and support. Yes, phyisically it’s even easier than previous one when i had nodes taken out. Just too sleepy. Got my first proper mastectomy bras today, feeling a bit better when wearing it - i’m still too conscious of my flat chest.
I hope everybody is better, esp. december - it seems you had some terrible time, poor thing - what were there results, hope they were good. I’m getting mine this thursday.
take care,
I felt self conscious to start with, but started by wearing baggy tops instead, couldn’t bear the idea of pressure on the wound so I just didn’t wear bras etc. slowly but surely I stopped hiding it so much and now everyone’s just used to the fact that I’m flat chested. When you start looking you notice just how many people are that you’ve never noticed. OK not completely flat like after B/L mastectomy but for example Kiera knightly in pirates of the carribean was dressed in classic chinese trouser suit which really de-emphasises the breast area anyway… She’s a very slender athletic build which I’d never noticed because I was never really obsessed with breasts anyway.
In fact the only people who actually even look at my breast area are women who have big boobs that they proudly display (plunge tops big time). Men don’t even notice. In fact recently I was chatting to a guy who’s just moved to the village, I’m in the pub wearing a top that doesn’t hide the flatness and he said… do you mind be asking what kind of cancer you’re having chemo for… I was stunned that it wasn’t obvious!
You can tell I’m doing chemo because I just wear buffs on my head, can’t stand the idea of wearing a wig and pretending I’m perfectly healthy when it’s so obvious I’m not right now
Well done you for being so brave and not wearing wigs and bras! I’m so impressed. i’m so bloody self-conscious, about hair and breasts and everything… haven’t reach chemo yet, will find out the regimen next week. the minute i was home i ordered mastectomy bras, and am wearing them the minute i have visitors. Not that i had big boobs anyway - 34B but being very vain at this point. And yes i know what you mean about keira - she wore no bras in atonement and still looked very feminine with virtually no breasts.
how’s your chemo going, how many you’ve had? good luck and be brave as you are!
