Deciding on Reconstruction or not

I know how you feel.It has been 2 years since my mastectomy and I'm still not sure! This was my second bout of bc(2003 had a lumpectomy).So I can only have a diep reconstruction due to radiation tightening my skin. I have had 3 ankle operations inbetween so don't feel I can do anymore surgery at the moment. I tend to forget about my prosthesis once I'm dressed but getting undressed is still hard.I don't do" naked" anymore.I sometimes have trouble shopping for tops with a higher neckline. I've adjusted but I couldn't say I'm completely ok with living with one boob.Don't rush into recon until you are very sure about it.My surgeon told me that about a quarter of her patients go for recon. I probably haven't helped you but at least you don't feel alone coping with one boob.

                       Tonya xx

Like Tonya, I've had breast cancer twice too (2002 and 2011). The first time I just had a lumpectomy (with chemo & radiation). This time I had a mastectomy. I'm getting sick of my prosthesis, and I've decided to get the other boob off because I had the first cancer at 34 and the second at 43 which they said is pretty young for two separate primaries. I'm booked in on 6th September for mastectomy and double reconstruction and I can't wait! Our sex life has definitely been affected by the mastectomy because I feel a bit self-conscious, and I'd like to wear clothes without a bra  at home without being lopsided. I also want my cleavage back!! I can't wear certain clothes at the moment, which the reconstruction will fix. These may sound like pretty superficial reasons, but it will make me feel a lot better. I'm only 44 damn it!! I want boobs!! Good luck with your decision xx Jane

Hi Renae,

 When I had my breast of in Dec 2011 I was definately not having a reconstruction. Here I am now in June 2012 and Ive had my other breast of and had a double reconstruction.

Give yourself time and one day the decision will just come. My decision came on my birthday when in a flash I decided I was ready to go on.

One step at a time.

Take care
Annie

Hi Renae,

I had a double mastectomy and immediate reconstruction 3 weeks ago as I couldn't imagine what/ how I would be without one breast (let alone two...)

I have to say that I'm happy with my decision.  I took my time making peace with my actions, so I agree with Annie - give yourself time.  Each of us may be on this journey, but there are many different paths.  I hope that you find your place on your path.

Take care,

Mon

Hi girls :) it has been 2 yrs since I was diagnosed with bc and finally I have made the decision for a bilateral mastectomy and recon with expanders/ implants. I'm booked in for the 23rd July . I've lived with one boob for 2yrs and I'm now over it !!!! Im nervous as hell but have confidence with my doctors . Xxxx

Hi Renae

Like Mon I too had a double mastectomy with the start of reconstructions (expanders inserted) 3 weeks ago tomorrow. I am having silicone implants. I only had bc in the right but a lumpectomy wasn't an option for me as I had a small boob with a large area that needed to be removed. So a mastectomy was my only option unless I wanted a severe deformity as my surgeon put it. So as my aunt had had bc in both breasts at different times I decided I didn't want to be a sitting duck waiting for it to come back on the other side and thought for peace of mind and symmetry my best option was to do both at the same time. I am 40 years old with two children and I must admit I am excited to get new ones as I was never really happy with my old ones. Age and children don't really help in the perkiness factor! In saying that a reconstructed breast really isn't going to be as good as just an augmentation, obviously more scarring etc. I also lost both nipples as my surgeon preferred not to keep them as the milk ducts all run to them as he put it. My cancer was in the ducts. I am terrified of surgery and originally was hoping all could be done in one operation. This is not the case and although at the beginning thought I couldn't cope I am surprised at my strength and am just taking it one step at a time. One surgery down two more to go.

Remember there is no right or wrong, this is your body and your choice, only make a move when you feel you are ready. Surely if you decide to leave it for now doesn't mean you can't change your mind in the future.

All the best

Lara xx

Your post it just what I needed, in the same boat with the ducts/ nipples and choosing to take my other breast. I'm turning 40 in jan and have 2 boys 6 and 8 .one thing I didn't ask my surgeon is do they make the nipples when they do the exchange ? I've read to different ways, one said at the exchange they use the skin to make a new nipple. And another site said its done by a skin graft at a later time.Did u wake up ok from the op? How long b4 u could drive your children o school or move around freely? Sorry about all the questions.... Lol but I don't really know that many young lady's to ask :)) thanks again xx kel

Hi Kel

My surgeon does the nipples on the third op. First is mastectomy and expander, second is removal of expander and insert implant, time between these ops depends on how big you want to be. Then everything left to settle in it's final place approx 6 weeks then nipple reconstruction. This is so they get them in the right place otherwise they may settle differently and the end result wouldn't be as good. My understanding is they use the skin that is already there and just pinch or pucker it. I have seen a photo and to be honest was better than my old one. Then if you decide you want too you can get it tattooed to create an areola - I'm going for a nice small one, I like the look better and I'm not real keen on getting tattooed, surely it's got to hurt. I googled it like I google everything so do the same. I have found it is harder to get images of reconstructed boobs but some are out there.

Your biggest op is the first, I have been told the second is easy because the pocket has been created so is straightforward and the third is easiest of all approximately 20-30minutes. Can even be done under local apparently.

As with recovery when I woke up it felt like I had a truck parked on my chest. Not really pain just pressure and I could only take little breaths. But I had morphine on one of those pumps that you just push when you need it also  helps with sleep so I went with it. By the next day the morphine pump was removed and I was up and about moving around, although had 4 drains attached. I suffered nausea and dizziness a bit which I was surprised about as I don't normally. Probably from moving around too much, being a mum of two 4 and 8 sitting down doesn't happen very often does it? Apparently it is common with this type of breast surgery so I just took all the tablets they offered - I don't normally even take panadol but I wasn't taking any chances. I was also so relieved to have the cancer out and the major surgery over I think I was on a high for the first week even though I was still waiting on results.

As for now I have a weird neuralgia (nerve problem) down my upper inner and under arms and also down my sides. It just feels really burnt and sensitive. I have just started some medication for this so I am hoping for some relief soon.

As for driving I was able to after my post op appointment two weeks after surgery. However everything is still really tender so as much as I love my independance wouldn't attempt a long drive or in too much traffic. School runs etc ok!

Although I was hoping to keep nipples I am happy now I don't have to worry as much and feel it is a small price to pay for peace of mind. At the end of the day we would all happily live without boobs if it was life or death. Luckily for us we now have more choices.

Any more questions fire away - you have probably worked out I'm a talker!!!

Take care

Lara xx

Maybe ring your surgeon and see if you can see pictures of reconstructions he/she has done including the nipples. If you don't want to bother the surgeon maybe the office staff could show you. Pictures I was referring to are my surgeons work.

Best of luck

Lara xx

Hi ladies, my experience with mastectomy and reconstruction was very similar to Lara's. The pain was there, but didn't last too long. The immediate recon with the mastectomy was worse than mastectomy alone, but not too bad. This time I had no lymph nodes removed, and lymph node surgery is the worse part of a mastectomy. The operation to replace the expanders with the implants, is very simple, and the only reason I spent the night in hospital, was due to the surgery being in the afternoon, and they like to give IVI antibiotics for a few doses. I was able to drive about a week after this surgery, although I am sure I could have managed alot earlier. The surgeon only opened up about a 6 cm area on
the side of the mastectomy scar. As the pocket is
already there, there is hardly any pain at all. I do
not remember needing to take anything much for
pain at all. I am now 5 months past exchange,
and there is still some movement. They have
become a better shape than at first, and my PS
said he won't do nipples till he is sure they are
permanently in place, so as to get the best
position. I am not sure if I will bother, but I am
certainly considering it. At the very least a tattoo,
as a 3D one looks pretty good. There would be
no pain with this due to the loss of sensation from
the surgery. My PS does the nipples in his room,
by somehow puckering up the skin with a minor
surgical procedure. I took many months for me to decide about the double mastectomy and recon. Once I had made up my mind, everything was good. My husband and kids wouldn't give me
their opinions, and I had to do this alone, which
really annoyed me. However, once I had decided to go ahead with the second mastectomy and then recon, they were all relieved. The comment was," thank God for that, and, about time". To them it was a no brainer, and I was happy to have
their support, and can now appreciate why they
insisted on it being my decision only. I have never
regretted taking this direction. Love Chris xx

I am 61, had a mastectomy 2 years ago and I am DEFINITELY having a reconstruction. I have had the first appointment with the surgeon and he said I should be "done" by Christmas. I can't wait! I hate my body. I don't "do" naked either as I am deformed and ugly. My recon is going to be the diep flap and I will be having the other breast reduced at a later time. I have a prosthesis but it is heavy and clumsy and I am always very aware of it being there so I am constantly adjusting my clothes. I know a large percentage of women don't mind only having one breast  but not me! I can't wait! 
Good luck with yours, Renae,

Lynne

HI, like Lara I underwent bilateral mastectomies with tissue expanders about 4 weeks ago,  while not a walk in the park it is certainly doable, I cant have morphine so managed on panadol/panadeine only, was up and about the next day, and the only thing that kept me in hospital was the drains, my surgeon doesnt allow people to go home with them, I have a bit of an issue with an unclear margin, which I will hopefully get sorted soon, and a small seroma(fliud built up) but have been doing most things since 2 weeks post, still have a bit of discomfort now and then and my scars will need a lot of work at exchange, but I am sure I will get there and believe it is a good option, good luck for your future descisions and treatment.

Cheers NArelle

I had a mastectomy (nipple sparing and partial skin sparing) with immediate silicone implant reconstruction done on 3rd February.

My recovery was by NO means normal, as my pre-exisiting conditions came into play making my recover and pain slow and higher than normal (I have a genetic condition of the connective tissue, which means I had trouble with the muscles that the implant was placed under and this as well as a neurological conditions i have also both cause chronic pain, so the surgery stirred these up and caused me a lot of pain, but the muscle spasms of my body learning the new position for the pec muscles was worse - for nearly everyone this is NO issue, it is just these condtions I have).

I decided I would NOT go one boob and prosthetic, as I saw my Mum go through Mastectomy and prosthetic in 1994 and until she passed in 2002 (or a totally unrealted cancer), i saw how much she had trouble with her prosthetic of it moving and such (sure they are probably much better these days but still...)

  Ialso suffer badly from eczema and skin rashes etc so knowming my luck I would end up with a shocking rash under the prosthetic, and just didn't want to deal with it, so I went the immediate reconstruction route, it was supposed to be an expander but he was able to save enough skin (he removed a lot of skin under my nipple to breast crease as my tumour was down here and puckering the skin in and we didn't want to keep ANYTHING that had a chance of the cancer being in it.I was happy to take the nipple too, but he said if he could he would keep it, as my tumour although in the ducts, was low down and not near the nipple. My nipple is attached to a blood supply but nothing else - I have little to no sensitivity, and there is NOTHING underneath it but the pec muscle and implant, he moved it up as well, due to the skin being taken from underneath.I was NOT big breasted to being with - about a C (with the extra weight I am carrying), and my new breast is probably a B(or maybe small C (I am not sure, but not that much smaller than my other one)).

I was givent he option of a Lattismus Dori flap reconstructino but after talking about my pre-existing condtions this was dropped as an option, as there was a very low chance it could weaken my left arm and my right arm is very weak and I can't afford that. I was also given the option of a DIEP or TRAM flap but for that I would have had to go to Syndey for the surgery as they don't do it here in Canberra, and I still have that as an option in the future if I need it.

I was also only 40 when I was diagnosed and turned 41 around 2 1/2 months after my mastectomy, nad I could deal with the breast cancer, the mastectomy but I couldn't deal with the idea of one boob and dealing with a prosthetic, so the immediate reconstructin was the right thing for ME.

I am also having my other breast off (skin and nipple sparing mastectomy with immediate silicone implant reconstrcution) later this year (after I finishe chemotherapy etc), as I have a high risk as my Mum, Dad's Sister and Dad's grandmowther all had breast cancer. i am having the BRCA testing done in August (or should I say I am seeing the genetics clinic to see if I qualify for free testing becasue i wont be having the testing otherwise becasue i can't afford the $2500 for it - both my breast surgeron and onoclogist think I qualify and both want me to have the testing done,and if I am positive I will also have my ovaries removed later this year or next year).

There is no need to make a choice immediately (unless you want to begin immediately with a skin sparing/ partial skin sparing and expander or implant reconstruction), otherwise you can make the choice anytime, YOU decide to if you ever decide you need or want to have one.

Hi Lara, I also had that weird arm thing. When I walked to one room from another, the nerves would tingle from the different temperatures. After a few months I noticed it had gone. Hopefully yours goes too.

Cheers Annie

Hi Renae   I had a Mastectomy in Nov 2011 and decided not to have reconstruction at that stage. I returned to theatre 8 hours after my op with a haematoma, losing a litre of blood, and took several days to get over the double dose of anaesthetic.  I have put quite a bit of thought in to whether to have reconstruction but at this stage I don't want to return for  more surgery. I play badminton and bushwalk and I am quite happy with the comfort and look of my prosthesis. The only time I really think too much about having only one boob is before I am dressed for the day  as It is a bit offputting with mirrors about !     All the best with your decision.   Cheers  Sue  

Lara,

 I also had a great sense of relief when they were both gone. It was like a great weight of my shoulders.

 I think my mental health has improved since the last operation and my anxiety has lessened. I will have to find something else to worry about now LOL.

Have a good day

annie

Well its very reassuring from reading all of your post that's it's a natural reaction to be worried prior to my op. it's also good to read nobody regretted it and it has lessened the anxiety of this disease. If I can keep my nerve and go through with the op on the 23rd , one thing I do look forward to is going into summer with two boobs. The whole ugly bathers weren't really working for me last yr. one more question has come to mind though. When u r having the expanders pumped up are they an ok shape to wear a lower top or re they weird looking. I did read a girls blog at some stage that they look really strange!! Hugs kell xxx

I'm going on Tuesday 26th for my first expander injection. Really not looking forward to it but I will let you know how I go. I was speaking to a lady today who had it on one side and said it was fine although her surgeon would only do 60mls at a time, She also didn't have any pain with her first op like I did, I'm getting 100mls so will see....Lara

Lara I've heard of a few people that have have to pay for the second mastectomy. I don't have cancer in my second one but I'm only paying a gap payment of $600 for the anatheistist "spelt wrong " sorry. I'm in private cover but it seems they all have different ways of charging . Hugs Kel xx

Lara,

Can I PLEASE have a cutting of your money tree if you get one  :o),

I really need it (Honest ☺), living on a pension (or in our house 2 pensions, is HARD)...

And I sure hope that the genetics clinic agree that I qualify for the free testing becasue there is no way in HELL that I can afford $2500.

♥

Im pretty sure if you don't have a really strong family history of bc or our cancer is the run of the mill with no family history then your out of pocket!! :( my doctor has given me the forms but I've no history. Probably a waste of time for me!!

Good lord that's quite a bit of history!!! I've thought about having my ovaries removed but my doctor said its pretty rad. I've got crohns so I understand the issue u have with symptoms being vague. Kell xx

Although my specialist say it would b very unlikely for me to carry a mutated gene, I've decided to go ahead and have a double mastectomy on the 23rd of July . For me personally I've got very dense tissue which I was concerned about from my late teens early 20's. Even back then I would say to my girlfriends that I thought I would get bc and that if so I would cut them off. So for yrs I went back to the doctors and my cancer that was non invasive and confined to my ducts slowly grew and grew to 17yrs later still not picking it up through dense tissue. Finally after me not accepting the diagnosis I flew to where I wish I had found all those yrs before. So the left one is gone and I vowed never to go under the knife again but 2 yrs has passed and now I want both gone. Peace for mind is a beautiful thing so for me this is my choice. There's nothing else Incan do, I'm fit I've got a healthy diet and lifestyle .i take time to smell the roses and look after my state of mind the best I can. And this is the last thing I can do. I guess u can't keep cutting things off as a garentee but if I do everything in my power and I was one of the unlucky ones to have it come back. I will know and can tell my kids that their mum threw everthing at it. It's a very personal journey that each of us will take a slightly different road. Xxxxx

Hi Renae,

I had a mastectomy last June (2011) due to extensive ductal carcinoma.  Admittedly it was a difficult process and I grieved my cleavage and my L breast.  Initially I wore my prothestic but I found I was more aware that I had a fake boob and it was a constant reminder that I had been through breast cancer.

One day I just decided to go out without my prosthetic and guess what.....no-one even gave me a second glance.  More importantly I felt better, I relaxed and had a great day out.  Now I don't wear my prothestic at all.  Having one breast is my new 'normal' and I feel more relaxed and confident.

If anyone asks it gives me the opportunity to tell them my story and encourage them to have regular mammograms.

Good luck with whatever decision you make,

Jayne

I have made the decision to have a bilateral mastectomy. I have been diagnosed with breast cancer for the 2nd time - 15 years after my first. I am booked in for surgery in a week. Would love some tips on managing post op. How hard are day to day tasks ( like wiping my bum:) , showering, getting dressed and undressed. 

Of course cooking and cleaning will be out of the question for at least 3 months - or at least that's what I will tell my kids.

I have heard that a wedge pillow is a good idea - where can I get one of those?

Anything other advice would be great.

Thanks

Hi Pauline, I also had a double mastectomy and reconstruction, and it wasn't too bad. You will be a bit stiff and sore, and have some drains, which are a pain in the neck, because they are always in the way. The staff at the hospital should give you a shoulder bag to carry them around which will make it easier. As far as personal tasks, you will be fine. The nurses had me up and in the shower the day after surgery, and though I was pretty slow, I was able to manage everything, and my worse side, (lymph node removal side) is my dominant side, and I managed. My wonderful mother in law would insist on doing my ironing, and would also bring some food with her. My kids ( all adult ) would put the washing on and off the line, and do the vaccuuming and things like that. Let them do those things for as long as you can. Thoses things really helped, and when people offer to help, let them, as it will really help you out, and they will feel useful. Good luck with your surgery. Love Chris xx

I got my pillows from the Zonta District - google them and then send them an email telling them you are about to undergo double mastectomies and they will see you get them. That was in WA but I am sure it is worldwide. I also got two from a breast cancer nurse at Breast Cancer Care WA. So I donated the ones I got from Zonta back to Breast Cancer Care WA. They are free so worthwhile trying. I found I had to sleep on my back for the first month so I didn't use them as much as I originally thought but I felt better knowing they were there just in case. I used them in the car to protect the area from the pressure of a seatbelt and it helped then.

I hope that helps and good luck with your surgery I too have had a bilateral mastectomies and managed really well. As Chris said stiff at first but we manage. Just accept all painkillers offered, now is not the time to try and go without.

Lara xx

That last statement made me laugh. Also if someone had told me I would have to sleep on my back for a month I would have been concerned. I am a side sleeper. I actually slept half propped up for the most part and at times I did get quite sore all I could manage was about 5 hours straight. However one night in hospital a lovely nurse offered to get me a heat bag and it made a difference so get yourself one of those too. Try not to worry the first day is the worst and you will sleep most of it. The second day although stiff is much better I was up walking around (slowly) and just on a high of relief that the big surgery was over. You can do it promise xx

Hi Pauline, I forgot to mention about the pillows. I bought a boomerang pillow from Target, and then stacked another 2 pillows on top, so I was almost sitting up. I found this to support my back and shoulders quite well, and I did get use to sleeping like this for a few months. I also put a pillow under my knees, and that took the pressure off my back and was quite comfy. Now I can sleep comfortably on my side like before and it is wonderful. Good luck with your surgery. I have had no regrets about mine. Love Chris xx

Im booked in for surgery this coming Monday! Will be good to get the first part over with. Nervous !!!

Thanks Lara , I had the first mastectomy 2yrs ago but it's taken this long to feel I could go back for more surgery.this time I've asked for the second mastectomy and then the start of inflaters.i came to the decision for two reasons, firstly they can't really see through my right breast tissue properly. And for me I would love to have a leakage again, not to wear low tops but o wear normal tops. The top of my mast has a bit of a dent there so all my tops are high:/// drives me mad in summer. Although it may take awhile to get used to boobs that look a little fake!!! I'm looking forward to getting rid of the tissue.i live in the country so u get support but u also get everyone knowing what u hae done b4 u do. So b4 I get asked a upfront question and stutter to get a answer out I'm preparing myself a one liner. So if someone was to say" have u got fake tits"? I'll quickly replyYES .... My real ones tried to kill me, so I had to cut them off!! Oh along with prior surgery, chemo , rays and medication!!! Lol not really a one liner but people can b really judgmental which I guess is human nature:) other than getting fit and eating healthy, enjoying my family and trying my hardest not to let anxiety get the better of me. This is the last thing I can do for them and me to try to prevent it from coming back at least in my breast. Didn't someone say that your 30's are the best yrs? Hugs kell xx

Cleavage not leakage!!! Lol. By the way, does anyone know how long the stay will be for this op? The first mast was 5 days!! Xxxx

Hi Kel, I was in hospital for 4 days with the mastectomy and insertion of bilateral tissue expanders. This was a little more painful than just mastectomy alone, but not much more. I didn't have lymph nodes taken this time, and that makes for a much better operation. As far as your boobs looking fake, I wouldn't worry. My implants are tear drop shaped, and in my old underwire bras, I look the same as before. I have my cleavage back again, which was important to me. However this cleavage is really just a nice gentle rise on my chest wall, which replaces the divet left from the mastectomy. In a low front T shirt, my cleavage looks very normal, and I doubt that anyone would look at me and know that I had
fake boobs, if I hadn't told them. I didn't go too
big, and I do wish that I had gone another 100
ml,as I am a bit flatter on top. My old and new
size is a 14B, and my implants were Allergan extra full projection and were 495g each. The
weight of my mastectomy was 380g, and I was
worried that I would be enormous, and nearly rang my surgeon about going down a size. I think I would fill my bra better with a bit more silicone. Having said all that, I am still very happy with my new fake boobs. Good luck on Monday. Love Chris xx

I can't thank you enough for that info !!!!!!!!

Hi Chris , they also said they were giving me tear shaped implants. The one they r putting in on the right side, the side that has had no treatment is a proper implant that has the tube connected to it. If I'm super lucky and it expands in the right place, then all he has to do is take out the tube bit. I guess that will give me the exact idea of the size ill be. Put if its to high etc then both will be removed and new implants place both sides. I'm guessing they mean the port or what ever you fill them with?? They also talked about having fat injections done at the end to smooth out any lines. Xxx