I am due to have bilateral mastectomies on 18th Feb. although still wondering whether I will actually be brave enough to go through with it!
I saw there is a similar post but different operation. I had breast cancer/then brca1 diagnosis/very high risk of new cancer in both breasts (I had WLE) so plan is mastectomies with expander implants and porcine strattice. I don’t want implants but there is no choice. Ironically, I don’t like pork and haven’t eaten it for over 22 years but I sure do hope it likes me!
I am feeling very scared-really scared of the wait before the op (5 hours, gulp) and going under (double gulp). Then post op. I am not sure how I will feel about these new breasts, I dont expect to like them. I will then have to have my ovaries out in the summer so this feels like the start of a long haul.This isnt helping me to feel positive I know but I can focus instead on how great it will be to squash my genetic heritage.
I have a horrible bra provided by hospital and two tops with buttons and pyjamas.
Any advice about managing pre-op fears?
Any suggestions about comfy clothes and coping practically post surgery? I am self-conscious and it hasnt even happened yet!
What about visitors? Hospital or home? What about daughter, aged 5?
Hi Rattles - I had a bilateral Mx but then different reconstruction, but hope I can help a little…
pre-op fears - yes a scary time, but I just told myself I had to do “as I was told” and pulling out wasn’t an option… and I was strangely calm on the day. It helped me that the ward sister had already said that having relatives with you for too long on op day was usually counterproductive - so Hubby came in for a quick kiss and then I sent him packing - afterall what could we chat about???
Visitors are good providing you have the sort of friends/realtives that can chat on without much encouragement from you - I organised a sort of rota which worked well as for a few weeks after the op one visitor a day was plenty.
Comfy clothes - to begin with button up tops, with short sleeves (in hosp) and baggy armpits to make them easy to get in & out. Also baggy trousers - I couldn’t do my trousers up when I got dressed to leave hospital as I was swollen around the tummy even though that was nowhere near my op. Also hosp can be very hot - think summer clothes!
Self conscious? I was amazed that I stopped caring - baggy clothes hide a lot - now I might wear a vest top to make sure I don’t gape, but baggy/frilly top on top.
I haven’t got kids, so can’t help you there…
I’m sure you will be surprised how well you do cope in the early days.
I had Bilateral mx, but did not want a reconstruction. Alice has it all there for you really. I would get some small cushions to go under your arms in bed & the triangle shaped pillows are great. I found vest tops were best for check ups as you can just slip your arms out. Good luck, it’s not as bad as you think it will be.
hi i too had bilatral mx in sept 2011 so havent really had chance to think about recon, but just feel grateful the cancer is gone from me .
Am having chemo now but wish you the best with what you choose josie1
Hi Rattles, I am sorry that you are feeling scared. I had an op recently as was so fearful but I got through it and the nurse held my hand as I told her how I was feeling.
I had a mastectomy with reconstruction but not the same op as yours. I had a six hours long op but when you are under you haven’t a clue how long it takes. Not so easy for family and friends though. I just wanted to get the operation over and done with because I wanted that horrible cancer removed from my body ASSP.
My operation was a long time ago. I was 39 with two kids and a very caring husband to help out. I couldn’t have managed mentally without his love and support. That op was 23 years ago! Yes and it still looks good and have had no trouble with the reconstruction since then.
Just to say we know what you are going for and are here to support you through this difficult time. Take one day at a time and you will get there. Much love, Val
hi, good luck with op, im a week after you. I am terrified. button up short sleeved nighties seem to be the best option. Just to say I had my ovaries out as it wasnt as bad as I thought xx
Just wanted to thank all the lovely ladies who responded.
Wen I got home yesterday, I put my bags on the floor and prompts burst into tears, really thought ‘I cant do this.’ Not helped by then seeing GP sicknote which said ‘bilateral mastectomies.’ Ironically, my boss is gay so this may prove too much information for the poor man! Then I read all your replies and it really helped-I feel like you threw me a line which I can hang onto…
Deep respect to scottish lass-oh my goodness, 23 years. You are an amazing role-model.
Even though I had cancer, and this is to stop more cancer, I just dont feel the same as I did when I was having treatment-that fear and wish to get it really motivated me then. Now,I find I keep having to remind myself why I am doing this as it doesnt feel ‘right.’ I also feel that I am giving up -albeit temporarily-my health, the one thing that means most to me. I just find it hard to have faith in my body’s ability to get better - at hospital today it took 3 attempts to get the pre-op blood, my hands are all bruised. It’s just so miserable to be back in the ‘system.’
Poor you, it’s horrible I know, it almost feels like you are subjecting yourself to something that isnt necessary but it is in terms of helping you move on with your life, that’s how Im trying to look at it, whilst gulping with nerves. I totally understnad what you mean, i feel like Ive just got back to feeling normal again after my last of 9 months ago and Im going back into it in the biggest way. I have my pre-op on Thursday and it’s the whole going back to hospital after having some time away from it brings that whole feeling back of being back there again, Im dreading getting my bloods done and run through in my mind everyday backing out.
Just think, you are doing this to protect yourself, feel more “normal” whatever that is and to be able to move on with your life. It is going to be hard but everyone keeps saying how worth it it is xxxx
Rattles can I just ask if your not wanting implants why are getting them? Why not have flap surgery? There are lots of different flaps they can do now from back, tummy, bum, and thighs… If your doc can’t do the surgery you want they should be able to refer youto somebody who can do it.
Don’t feel pressurised into having surgery you dont want. If you don’t feel that the time is right you can request to wait another 6 or 12 months.
I carry the brca2 gene and had a hysterectomy and ovaries out in sept 2010 was originally just my ovaries but decided to hav they hyst on the day of surgery as had a thickened womb. I was booked to have double mastectomy with expander implants and strattice recon after my gynae surgery. When my breast surgeon said he could do it before Xmas I changed my mind as was still recovering from the hyst and still unsure about surgery… I’d had a wle to both breasts as had bc twice. Surgeon wasnt in a rush as I’d had rads after surgery and he felt this gave me more time to decide as recurrence is low and would give time for tissue to be at its best. My plastic surgeon was the opposite very keen for me to have surgery soon. He was also very keen for me to have the LD back flap with implants rather than the expanders and strattice but at the time I didn’t want the LD as the op was bigger and recovery was longer. My plan was to have surgery this year however 6 months ago I was diagnosed with a recurrence to the chest wall nodes. This is a rare place to get a recurrence but needed surgery to remove nodes plus chemo which Iv just finished and will be finding out on Friday if I need more rads.
Now a lot of people asked me if I wished Id already had the mastectomy but because of where the cancer is this time it would have happened anyway even if I’d had the mastectomies as the chest muscle isn’t removed.
I always said though were I to get bc a third time I’d Def have the surgery but my breast surgeon would prefer I delay it for at least another year or two do he can monitor the area.
What I’m trying to say is you have to do what’s right for you. If I’d done what my PS suggested and had the mastectomy a year ago then i firmly believe this new bc would not have been picked up till it was a lot more advanced… My PS no doubt wouldn’t agree lol
Can you make an appt to go back and speak to they genetic psychologist? they are very good at getting you thinking around the issues. After I decided not to have the surgery in dec 2010 I went back to see the psychologist and it was very helpful.
Hi rattles
I hope you don’t mind me joining in. I have had breast cancer twice in left breast resulting in mastectomy. I had chemo radio first time, I then had ld flap done but after 6 months in and out of hospital had it removed due to infections etc. I had this op because it was quicker recovery quicker and I could have it done at the hospital I had been treated at. I do not have the brca gene but have family history I had my ovaries out 18 months ago. I am now seeing another consultant on 21st to make a decision to have the other breast off and double diep.
The reason I felt I had to input is I feel I took the easier route so I could go back to normal quicker, I lost my job(company not happy for me to return part time - long story and had to get a solicitor involved),easier recovery however I didn’t realise implants need replacing.
however a lots of ladies are happy they had ld.
In hindsite I wish I had looked more into the ops and not worry about anyone else but me,what I am saying to you is talk talk talk don’t rush and make the decision which you are happy with
Hi Rattles,
I can totally emphasis with what you are feeling. I had 1 mx after I was diagnosed in 2010 and another risk reducing mx last year because I was BRCA 2. The feelings I experienced after the 2 mx were totally different. After the first mx, I had to had chemo etc and was totally in shock really and had that very common feeling of get that cancer out.
My risk reducing surgery last year was very different. I choose when I wanted it, no waiting ( I am NHS). I had Ld flap with implants both times. Like you didn’t really want implants but after discussion decided it was the best option.
I was in hospital for 5 days and on the last day when I was waiting to be discharged I had an emotional meltdown. The enormity of what I had done, and that I couldn’t go back was really hard. My absolutely wonderful BCN came to say goodbye to me and got the full force of this! She referred me to a psychologist who specialises in cancer patients and this has helped. I know I did the right thing but it is normal to have doubts. I didn’t want to worry about getting another primary cancer, it is enough worrying about getting secondary cancer and trying not to be paranoid. Because the surgery is elective and knowing you can opt out makes it harder.
In terms of stepping back onto that tread mill and being a patient again, I recovered very well and it was easier than the previous surgery because I knew that that was it, I wasn’t going to have chemo etc. in terms of pain both times I had very little pain. The second op the day after surgery was the worst, my whole body seemed to ache which I didn’t remember from the previous mx but it only lasted 1 day and with the painkillers was fine. The biggest problem was veins. Like you mine are now rubbish and they couldn’t get 1 in my arm so ended up putting anaesthetic in via cannula in my foot which when I came round was painful and had pressed on a nerve giving me a dead foot for about 3 days. Within 2 weeks I felt back to normal although I had 6 weeks of work as that is what they recommended. Remember to do the arm exercises as this definitely helps regain the movement in the shoulder. I went home with 2 drains both time and came back to the Breast clinic to get them removed. I think one of the funniest moments was sitting on the bus going through the City ( I’m at Barts in centre of London) with my drains in a bag beside me and me trying to conceal the tubes under my jacket!
I have 3 children and the youngest was 4 at first op and 5 last year and after 1week post op was able to look after them and take them to school do packed lunches etc no problem.
I have got used to my new breasts, but it takes a while. Having had 1 mx and recon as part of my treatment helped as I knew what it was going to look like.
I hope you can come to terms with your decision and surgery but please don’t be afraid to ask for more time to consider if you think that is what you need.
Thanks again for to you all your replies, it really, really does help and I keep re-reading them, breathing and trying to stay calm. It is very grounding and makes me feel like I am not going mad.
Lulu, I do take myself back to the point of walking away from this. I have written down all my reasons for having the surgery, and they still stand. I do know this is a choice.I just wish I didnt have to do it.
Re implants- my surgeon says because of my size, weight and current breast size, implants are the only option-he says there isnt enough flesh (this isnt the right term) to reconstruct two new breasts. Also, somehow this is connected to blood supply as a result of the lage WLE (my orginal tumour was very high, about 3-4cms down from collar bone).Also I want to take HRT post ovary removal (I suffer miserably from some menopausal symptoms). This, and the main thing I keep coming back to is that if I do get cancer again, I will at least know I did everything I could. Having said this, I think if I had not had breast cancer (ie just (ha- this was much harder to take) brca1), I dont think I would have had surgery.
I have had counselling too (feeling now like I should be coping better). I think this helped me realise that I was over-exagerating my fear of surgery and underplaying my risk of cancer. I honestly feel that I will never want to do this, but if I do, then I would rather do it on my terms. It is like the ‘least worst’ option.
I just keep getting hit by the enormity of it all and I suppose feel a kind of grief. I never really felt scared by all the medical stuff when I had cancer treatment whereas now (when there is far less to be afraid of), I feel terrified. I know it doesnt really make sense.
Anyway, thanks to you all again for your encouragement. I think you are amazing. xxxxxx
I think when you get diagnosed with cancer then you really kinda have to have surgery… But going back later and getting what would appear to be perfectly healthy breasts does seem extreme…
I think for me if I had the gene burning cancer I’d have been more inclined to have surgery to prevent it happening… Now iv had it three times part of me wonders if it’s all a bit too little too late.
The risk for a breast cancer in the other breast is about 50-60% so still quite high but the risk of a new 3rd primary (iv had two primaries and one recurrence) is thought to be much lower… So for me is it worth the risk? Nothing can take your risk to zero but the surgery dramatically reduces it to less than 5%.
Interesting what you say about your onc wanting to do mplants cos he an do them bigger… Usually it’s the other way round and they do flaps if they are trying to make them bigger but implants are better for small breasted women… And you can get a combination like the LD flap with an implant so it has a more natural feel and look with the LD muscle but a expander implant to get to a size you are happy with.
I know it’s not an easy decision… But as my PS once said if you’d consider having the surgery after you get cancer again why not consider it before you get cancer again.
Well, this is me bowing out-for now-been posting here about this surgery for over 6 months and this time tomorrow, will be in a new phase of life, and a new way of being. Good luck to all and lots of love, Rattles, xx