I have lobular breast cancer, I have had a lumpectomy and my surgeon has now told me that I need a masectomy. I am very undecisive about having just a masectomy or reconstructive surgery. I feel that reconstructive surgery is too much of a major operation but I like the idea of having 2 breasts. I am so afraid of waking up after the masectomy operation with only one breast, I do not know how it will affect me psychologicaly, can anyone offer some advice and share their experiences with me to help me make a decision as to what way I should go.
Hi Jeannie, welcome to forums and hope I can offer some advice. I’m 40 and had a mastectomy 5 weeks ago. I have ductal cancer. I am doing well but will need further surgery to remove all nodes as there was cancer in one, from the sentinel procedure, and that will probably be next week. At the time of diagnosis the BCN and consultant talked at length about my 2 options which were just mastectomy or mastectomy and reconstruction. I decided fairly quickly for the first, it was my gut instinct, and have no regrets. I believe 50% go for either procedure. I am a single parent to a teenager and only have my 80 year old mum to help, and that was another reason why, as I wanted to be up and about as soon as possible. I am coming to terms with having one breast well I think, although some of my friends have been horrified by my decision not to have a reconstruction. I’m quite happy wearing my “comfy” and will get a proper prosthesis next week.
I have heard some wonderful stories of reconstruction ops, and bear in mind you could always have it done later, in a year or two’s time, although I believe the cosmetic results aren’t as good as skin has to be grafted, but under clothes it can look great. The recovery time is longer from the op.
I hope this helps a bit, and good luck!
Liz x
It is such a hard decision. I was really unsure and fully respect those who do not have reconstruction. It is a big operation and the recovery is hard, particularly if you have chemo soon after. I am really pleased with the results of my reconstruction. Get as clear an idea as you can as to what the reconstruction would look like for you. There are not enough photos around. The cancer backup website has some good pictures, but make sure the plastic surgeon is clear how your reconstruction would look as they can be very different. I am not self conscious about my shape at all and would wear anything, go swimming etc wihtout a second thought. I am 34 and I wanted to be able to run and swim and do active things with my little boy and it felt that long term (all being well) reconstruction would be worth while. You will find people who are happy with each option, but only you can decide. If you search reconstruction you will find many old threads on this topic.
Good luck.
Dear Jeannie
Welcome to the forums. I am posting a link to a BCC publication about breast reconstruction which you may find helpful to read, you can read it via the following link:
breastcancercare.org.uk/docs/breast_reconstruction_dec06_web_0.pdf
You are also welcome to call our confidential helpline for further support and information on 0808 800 6000, it’s open Mon-Fri 9am-5pm and Sat 9am-2pm.
Best wishes
Lucy
Hi Jeannie,
I’m 47, single, and had my mastectomy about 5 weeks ago. Like you, I was scared of how I’d feel right after the op - I had this awful scenario in my head where I’d be sitting on my hospital bed, looking down to where my missing breast was, and crying buckets. Well, it never happened. Apart from a couple of wobbly moments after I came home, I’ve been pretty happy and not at all self-conscious, so long as I’m dressed and have my ‘softie’ in place. I’ve been able to wear all my usual clothes, including the low-ish v-neck tops and blouses, and even my low-cut evening gown looks fine. I feel totally confident facing friends, family, work colleagues and the general public. I’ve been clothes shopping since the op, and if the shop assistant *had* come into my dressing room while I was changing, she’d be the one getting a nasty shock, not me! My ‘falsie’ snuck out and began to show the other day while I was having dinner with a friend in a posh restaurant - no problem. I just laughed and shoved it back into place. And before you start thinking I’m some kind of ultra-confident extrovert - I’m not. I’m pretty average, so if I can cope with this major change in body shape, you probably can, too.
Only you can make this decision, but as others have said, you can always go for the reconstruction at a later date.
Yvonne
Hi Jeannie,
I had emergency mastectomy + FNC back in Dec 05 aged 37, immed recon was never offered I was told it would follow treatment.
While I accepted that the cancer had to go, I was really upset at the new shape in my body, I began to loathe clothes shopping as you always have to bend forward to check your neckline wasn’t gaping and stopped taking my 8 and 6 year old swimming. I really got quite frustrated last year when attending a string of 40th birthday parties and friends all seemed to be wearing gorgeous strapless dresses or summer tops. I never wore granny tops as I tended to wear a M&S close fitting strappy vest tops over my bra, but just felt too covered up at times and restricted in choice.
I eventually had my recon Dec 07 (2 years) and am so pleased with the results, I know its still early days and the swelling has to settle but already in a bra with a cleavage I feel so much like the old me again.
Each to their own, some woman dont and some woman do want recon.
Has your BCN offered any advice, if you choose delayed how long is the wait, this could also help you you decide.
Best wishes Debbie X
Hi Jeannie
I had a mastectomy in November having first had a lumpectomy back in January06.
I always had in the back of my mind I would eventually end up having a mastectomy. I followed the same thought pattern as
Liz (quarteter). I did want such a major operation as a mast & recon. I haven’t regretted the decision one bit. Yes I do look a little odd where undressed but thats just the new me. My husband has never looked at me in a negative way and as my son has labelled me a ‘one tit wonder’.
I have got on well with the prosthesis and know I can have a recon at a later date if I should ever want one, but at the moment that does appear on the radar.
My only advice is to follow your gut instinict, what suits me might not suit your lifestyle. either way good luck.
Take care
Carol
Hi Jeannie,
I was in the same position as you - had lobular cancer, WLE and then mastectomy due to LCIS. I was diagnosed in Feb 07 and was offered immediate reconstruction with my mastectomy in April. I took the reconstruction with no hesitation whatsoever. Yes, it is a big operation, but it’s soon over and done with and now 8 months later, just a blur.
I am VERY happy with my reconstruction using the DIEP method - I went to sleep with my breast and woke up with it, though nippleless! In August this year, I went on a clipper ship holiday and got to know lots of the other passengers. I wore a bikini and by the last few days we were playing “guess which one?” - which the majority got wrong! I saw my plastic surgeon last week and she’s really pleased with it too - am now on the waiting list for a new nipple and will then be “complete”!
As I said, I have never regretted having it done and feel that if I hadn’t I would have a much worse body image of myself. I think the emotional benefits of reconstruction far outway the experience of the operation.
Hope this helps,
Sally xx
Thank you all for your comments, at the end of the day it is up to me, one day I want a reconstruction and the next just the masectomy. I notice Liz (Quarterer) said the consultant and BCN spoke at length about it to her, I have never had that time spent on me. The BCN quickly spoke about both operations showed me the 2 prosthesis and said the decision is up to me.
I am going to the Haven support centre today and I will speak to one of their members who has had a reconstruction, she will also show me what her breast looks like.
My gut instinct is that I do not want a major operation but I also want (near enough) the body that I had before illness struck. I want to feel whole again (if you know what I mean).
Thanks once again to you all.
Jean
I too am having a major dilema on this one. At the moment I’ve crossed out the tummy flap option, even though I’ve seen a colleague’s one and it really does look great, although without a nipple it doesn’t look sexual. In tight fitting low v-neck clothes you wouldn’t know which one she has had reconstructed.
I am worried that I will lose some muscle use, as I’m right handed and it’s on that side, I don’t want to give myself any more complications than necessary. Also I’m a 36AA so I’ve never had a cleveage, so not going to miss that! But I will miss strappy tops.
My Breast Surgeon seems more concerned that I should see a plastic surgeon than is worried that I haven’t yet seen a BCN, although we have spoken on the phone. So I’m seeing the BCN mid January to see a prothesis and photos and hope that this will help my decision.
Good luck with your decision Jean, I don’t think that there is a right or wrong one.
Hi Jeanie and Wizzbaby.
I have had similar thoughts. I had lumpectomy and sentinel node in oct as invasive. No spread to lymph glands but found two more spots so mastectomy was suggested. Luckily my breast surgeon could do the reconstruction and i was offered it at same time. There was no question about it i wanted it but the thought of another op and a big one when i was just getting over the other one was the horrifying thing… i read so much on here about bad things that i actually started a thread reconstruction positives please. I got so many reassuring responses it helped make my mind up. You could prob find it and read them if do search on reconstruction… my consultant was very good he said he could only do back op. To be honest this was the one i would have gone for. I couldn’t bear a scar on tummy that i would see in bath etc and i didn’t want anymore problems. To me too many organs etc round tummy area. My surgeon explained to wear one of my normal bras for measure up and he drew the thickness of the strap and said he would get my back scar in that area so it wont show. I wasn’t bothered about it on my back as i couldn’t see it. I saw BC nurse who showed me pictures some horrific as of course it could go wrong and reject new skin implant etc. she also gave me a falsie to hold and i couldn’t it was awful something like you get in the joke shops… my opinion anyway. I then had to think could i cope with looking at one boob in bath undressed etc. The answer was no i couldn’t. I am 49 married three grown up children and one grandson so not in habit of showing boobs off but this still wasn’t for me. If i had needed a double one then i think i would not have had reconstruction as it would have been even. Anyway i went in on 6th DEC was out on 10th still had drain in and moped around. I was really pleased with results i had worked myself up to anythings better than nothing so i wasn’t disappointed. Well i am so pleased although I did look like lopsided Jordan to start with. I cant believe there was no pain. I took painkillers as they kept pestering me to at night so i thought it was going to get worse but no it was good. I have still got little use in lifting stretching etc. found getting out of bath awkward, but exercises help a lot… I wore a low cup top and you cant see. My surgeon took a little more than was needed so removed lumpectomy scar so now just have one scar. I have had a bad reaction to dressings but today consultant said looking better. It took me four weeks to feel right and wanting to do things. i did take it easy as only husband and i in house and he took three weeks off to be with me. I am sure i could have got better sooner. Anyway sorry to ramble on its your decision but i would go for it. as far as nipple i cant be bothered to go through another op and i don’t think anyone will miss it… take care xxxxxjuliexxxxxxx
Hi Jal777,
After meeting a lady today who looks great, after having a reconstruction (she did have this work done privately, don’t know if that makes a difference), I have near enough decided on a masectomy/reconstruction. She was concerned that the plastic surgeon had only given me one choice and that was to take skin from the abdomen, DIEPFLAP. He did look at my back but obviously, for whatever reason, thought that the abdomen was a better option. She had an implant and then the skin was stretched over the implant with an expander, which is much less invasive. She advised me that I should ask the surgeon why he had only given me this one option, as she said bang a few tables. I have made an appointment to see him next Friday and hopefully by then I will have made up my mind one way or the other.
Thanks for your comments Julie (jal7777) it all sounds quite positive.
Hi everyone
I also had Lobular BC and after a WLE was advised to have a mastectomy. I had a skin sparing mastectomy with immediate tram flap recon in March 06. My new boob is about 1 cup size smaller than the other one (38C and 38D) but with a small stick on prosthesis no one can spot the difference and I also have kept my cleavage, can wear low cut tops, bikinis etc. The incision is made around the nipple which is removed and the breast tissue is removed from here too so I only have a round scar where the nipple used to be, but this can be tattooed on in the future if I want. I am not sure if this type of mast is a possibility if you are having or need to have radiotherapy but i didn’t need this as I had chemo too (before the op).
There is no escaping that this is a major op and I felt like I had been run over by a bus for a couple of weeks. My tummy was very tight and I was crooked over like a little old lady for the first week!!! but this soon goes and eventually I could stand upright again. Absolutely no regrets that this was the right thing for me to have done.
Good Luck Jeannie whatever you decide.
Wendy
Hi Jeannie
I had lobular and ductal cancer in one breast and chose to have the other removed as well - just as well as it turned out DCIS. This was done in march 07 I asked my surgeon about reconstruction and he told me to wait until all treatment was finished with. A friend who a consultant gynaecologist also told me the same thing - get all the treatment over and done with first. I have now finished my treatments - chemo and radiotherapy - and am wondering whether I’ll bother. I don’t wear prosthesis at all and have got used to not having boobs and I don’t know if I can face another operation. I suppose it depends on your age (I’m 63) but I don’t know why some women are offered it at the same time as surgery and others not. I would have taken it if I’d been offered it at the time. Good luck in your decision.
Sharon
JeannieG,
Just like you I have a lobular breast cancer. Mine was Grade 3. I have finished chemo, had only 5 out of 6 as my last one was cancelled due to terrible side effects from taxotere. Anyway since my tumor has shrunk, I could either have a lumpectomy or mastectomy. We both chosen mastectomy. My surgeon also offered me a mastectomy with immediate recon using implant as I am small bilt (according to him!). I have lost a bit of weight whilst on chemo. So this is what I am taking. My operation is scheduled on Tuesday 29th Jan 2008.
I asked if the immediate recon will effect the radiotherapy which I still will need after the ops, and he thinks it will not.
Long wait but at least it gives me some rest time.
Sari
Hi,
I’m a little like Sari, I’ve had chemo first, and have my surgery scheduled for early Feb, and am also quite small. I discussed all the options with friends, my partner and of course the surgeon.
Like you, I did not want to increase my op or recovery time, so have gone for an implant option, which is part saline, part silicone, and will be inflated over a few weeks to naturally stretch the skin. This avoids having to graft any skin from elsewhere, making surgery time much less, and recovery time very quick. After full inflation, they will then just remove the top-up port, implant stays in permanently. So no second surgery. If for any reason there is any damage from rads, or I am not happy with the implant, I still have the option to have a recon like LD flap or DIEP sometime down the line, so feel this is the best choice for me personally, and keeps future options open. I think this type depends on how big you are to start though! Good luck with your surgery, whatever you choose.
Shannon
x
Hi Jeannie… I had mastectomy on Nov 6th ,had chemo before that. I did not have recon as i still have to have rads. I am leaving the decision for a year to see how I get on with a falsie… not too bad so far.I’m leaning towards no more surgery ( Sari… I was told that rads could affect an implant… amazing how advie seems to vary so much!)
Something to consider ( depending onyour size) is how happy you are to have an implant. I know loads of women have them but I donot feel happy tohave one &my surgeon said I would need one if I had a recon as I do not have enoughf at on my back to create a whole breast shape.( I’m 32E). Once over rads and properly healed I am hoping to have a stick on prosthesis. I thought I would be really traumatised seeing myself one breasted but its not been as hard as I thought… like evrything else to do with this wretched disease you have to take a deep breath & carry on!
Goodluck, you will come to the decision that is right for you
Mand xx
Hi everyone… The possible long-term side-effects of radio therapy are scaring me to death…I don’t want to develop wheezes or heart problems in years to come. So I’m considering a mastectomy for just these reasons. I think the medics think I’m mad…my cancer is(was?..had a lumpectomy) a Grade 2, 14mm, lobular or ductal I don’t know, but there is no lymph involvement. I have started taking tamoxifen, which I must take for 5 years. I am expected to have 5 weeks of radiotherapy. Chemo isn’t necessary in my case. Is anyone else in my situation or has been through a similar situation…The bottom line is I want my health back (if poss) and don’t want possible lung or heart problems later. At the same time a mastectomy is radical isn’t it, especially if it’s by choice? Advice/ experiences very gratefully received please.
Shannon,
I had a change of plan. Although surgeon said he would do a skin sparing mastectomy with an implant, his advise for me is to have a total mastectomy in case there might be some cancerous cells left behind on a skin sparing mastectomy. I have a lobular multi-focal bc.
boohoohooo… a week agao i was set on mastectomy with immediate reconimplant and now I am having a total mastectomy with no implant. other recon option open in 2 yrs time but not the one with implant.
ops schedule on tuesday 29th Jan.
Hi everyone,
Just joined, it is amazing the differences in treatment. I was dx in Sept. 2007 with invasive lobular cancer and opted for mastectomy and immediate recon. using LD . Had sentinel node checked Oct. they were clear so had main op. 8th Nov. no implant needed I had enough tissue to recreate 36b. Did wonder if I was being silly having a recon at my age, 60, but was reassured by BC nurse, surgeon and reading message boards. I feel great, back was stiff for a while and had to have fluid drained off twice, but overall result is great.
I am now concerned because I refused chemo as the side effects seemed to outweigh the benefits. My tumour was 4.8cm not sure of grade. I have opted for radiotherapy because of the relatively small margins and am on tamoxifen.
Any comments anyone?