Hi everyone, thank you for all your lovely messages I'm sorry for the delay in updating you. Due to a nasty chest infection, I wasn't able to have the SLNB until 13th November 2015. All went well and thankfully the lymph nodes were clear. After doing a lot of research, I eventually changed my mind about implants as I didn't want to have surgery every 10-15 years, and I didn't like the idea of having surgery in my old age just for an implant. My PS made it clear that breast reconstruction involves having more then 1 surgery, and I thought if I'm going to have more surgeries then I would prefer to get them out of the way while I am still relatively young.
On 1st February 2016, I had my mastectomy and immediate extended LD flap. The surgery took just over 4 hours and I was in hospital for just 2 nights. I had a high temperature straight after surgery, which was controlled by antibiotics and paracetamol. Funnily enough, I was expecting to be in more pain then I actually was, I hardly touched the morphine! I came home with 2 drains which came out after 10 days. I'm pleased with the results so far, obviously the reconstructed breast is smaller then the natural one, but I still do have a small cleavage!
The next stage of my reconstruction is lipofilling to create more volume. Although my PS said he could do the lipofilling 6 months after my last op, I decided that I will wait until next year to have it done as I want to properly heal myself first. At the moment, I am having physio which has helped a lot and I have nearly got full arm and shoulder movement back! I can feel my back get swollen from time to time, and the area below my scar is quite tender to touch still. In spite of this, I am back doing my normal, everyday activities without any problems. As I mentioned before, the reconstructed breast is smaller then the natural one, so I have just been fitted with a partial prosthesis. I had to go back twice for the fitting as they never had my size. All the one's I tried on were too big!
Overall, I am happy with my reconstruction choice and the outcome so far. I am nervous about the lipofilling surgery, but I'm trying to put that to the back of my mind until next year and just focus on adapting to the 'new' me. Thank you to everyone who replied to me and shared your reconstruction experiences. It really helped me through a very dark and horrible time in my life.
Hi im so sorry to read about the hell your going through. Age I dont think comes into all of this. Having recently had my mastectomy their were ladies in their late 70's going through just a s much pain as to what to do. In the end its all a personal decision and look at that in a positive way we are lucky to have so many options.
I found I could only really take one decision at a time. I needed the mastectomy to put a line under knowing in my mind that the DCIS which was vigerous had been taken out of that part of my body. I was told that if I wanted reconstruction that decision could be taken many years later.
So dont rush take your time, your young and have many many years ahead of you, I hope everything goes so really well for you. Sue x
I'm having a Prophylatic bilateral mastectomy with direct to implant reconstruction on the same day as you (19th). I am having silicone implants with the pig skin strattice. I decided not to have the expanders (TE) because I wanted to only have the one time procedure. The LD wasn't an option because I didn't want to deal with any muscle weakness. I don't have a problem, in theory, with implants or with the pig skin so it seemed the best option for me.
My decision was really between the tissue expenders and direct to implant but I wanted the procedure over and done with with the least amount of hospital visits.
Thanks everyone for sharing your experiences with me and for the kind words of encouragement. Seen my consultant today, I have decided to go for immediate reconstruction. Will be having the SLNB on Monday which I am really nervous about as it will be the first time under general anesthetic. Will be seeing PS next Thursday to discuss options. ATM, it is between pig skin implant or expander. Thanks again for all your advice and encouragement. I will let you know how I get on. Kaz x
I had a mx with immediate recon using pig skin and implant in Feb 14, only option other than the LD flap with implant and I did not want my back muscle cut up. My area does not do the strattice on NHS so I had no choice but to go private. Same surgeon tho. It takes a while to get used to the feeling of the implant - its cold, and harder than a real boob. I am a 32 b cup so not big and my other boob has been lifted and slightly reduced to try and match them up - my foob is still slightly smaller than my real boob! I lost my nipple in mx but have not had it reconstructed - mainly because I regained use of the nipple on the good boob following the uplift and I could not face another op. I use stick on nipples which work well for me. The only problem I had with the pig skin was a rash which was treated with antihistamine - nothing major. It will be two years in Feb 16 and there is not a moment in the day that I am not aware of my foob. Its not painful as such its just different. Certain movements do still feel really strange i.e. pushing heavy fire doors, opening jars, using 5th gear! Push ups are definitely out for me! However, that all aside it looks good. Yes I have scars but really the uplift scar is much worse, In the first instance it felt like a bowling ball had been strapped to my chest but after 12 months or so that changed and soften a bit. It amazes me when people say "everything back to normal now then" no - my breast has still been removed and I have a lump of silicon in my body and scars. Would I do it again - yes I would. I hope that helps.
I had my mastectomy in August this year with an expander fitted ready for implant in the future. I had invasive lobular carcinoma which consisted of 3 tumours so only option was mastectomy taking the nipple away too. I am so pleased that I eventually went for the expander . I won't lie it is painful at times and when I have it filled every few weeks it gets really hard and hurts for another few weeks. On Friday I had the last 100mls. I haven't got big boobs . If you saw me you would no which boob was operated on in clothes. Without the shape of the boob is amazing and doesn't look odd without the nipple. I just didn't want another part of my body scared if I didn't need to and so glad I this way was right for me. I had my surgery in Bristol by Sassi who was incredible.
hope this helps
Like you I was diagnosed with non invasive but very widespread dcis on Christmas eve last year. I had to have a mastectomy in February. As a 34B there was not a lot spare! I had immediate reconstruction with a tissue expander as couldn't face the bigger operations and longer recovery times that would have come with the alternatives. I had a number of expansions with the final one in June. I had my operation on 23 Sept to replace the expander with a permanent implant. It has made such a difference and looks and feels much more like my old boob. I also had Avery slight augmentation of my other boob to match their shapes as I am 48 and have breast fed 3 children. For me it was,all about shape as I didn't want to be any bigger. I have just gone up one cup size and am happy. Just nipple reconstruction on the mx side to go and then I will be done ! If I can be of any help then do pm me. The decision making and waiting part is the worst bit I think.
Many congratulations on your degree!! Great to have something to celebrate amidst this.
Hi Kaz, sorry to hear you are going through this. I had a mastectomy in 2013, I was really scared thinking about it before hand, just like you, as I'd also never had an operation in my life, so both being in hospital and going through an op was a terrifying thought for me (cried buckets over it!). But in my experience the operation was actually no problem. At the end of the day I was under anesthetic - one minute I was looking up at nurses and they are telling me that I will be feeling sleepy, next thing I was awake and it was all over. Anasthetic is marvellous!!:)
I sympathise with your thoughts and anxiety about reconstruction.I had similar advice as you and was given 3 options of how it could be done (implant, muscle from the back or tummy fat). I'm very slim too and would only just have been able to have the latter two, but for me the process of putting my body through extra and the possible complications after just weren't worth it, and I hate the thought of an implant (just squeemish about it lol) so I didn't have anything done.
Everyone is different though and has different experiences and perspectives. You need to decide how you feel about your body and body image. and do what's right for you, not anybody else. I personally never been that focused on my looks so having one breast didn't bother me, and I haven't found it distressing to see myself in the mirror. I have a prothesis which I got post treatment at the hospital on the NHS and wear in my bras (I wear mastectomy bras which have inner pockets in the cups - the prothesis sits well in there and there is no danger of it falling out because of how the pockets are made. You could never tell I had one in there!:). You get a temporary fabric one first and then are fitted for a proper one later which has a natural feel, and there are different shapes and sizes, so the fitter will find one that best matches your shape.
One possibility might be that you put off reconstruction until later - maybe you could speak to your doctors about that? From my experience I know that it's possible. So It may be that option might help you have time to decide if that's what you want?
It's a tough time emotionally, but hang in there, you will get through it:) I wish you all the best and hope it all goes well for you.
Hi Kaz, totally understand your indecision. I was diagnosed with DCIS in Dec last year & had bilateral mastectomy with immediate LD recon with implants in January. It was a complete whirlwind & I went along with the recommendations of my PS because I had no idea what else to do!! Although I'm 45 (so a bit older than you!!) I am also slim build & was an A cup at the time. I'm happy to answer any questions you might have. I am still in some discomfort with my back, however nothing that prevents me doing anything I used to, in fact I ran a half marathon last weekend in a not-too-shabby 2hrs 46 seconds!!
Let me know if you gave any questions, am happy to answer.
Hi Kaz, glad you are sounding more positive. Will try to answer some of your questions.
I don't regret having the reconstruction, I feel it is a good match for the other one, my husband has also been very accepting of the new me. Most of the time I don't experience any pain in it at all, just an occasional twinge but I still have some stiffness under the arm from the mastectomy and sentinel node biopsy but it is more a need to stretch than a pain. I go running again and go to the gym, just avoid things like press ups!
I was very paranoid about the risk of rejection after the op and did have one false alarm trip to a and e. I had a panic after about 3 weeks and the surgeon gave me a course of antibiotics but it was fine. My surgeon told me before the op that he had performed the pigskin and implant op 50 times and had had 2 that had rejected, which made me decide it was a worthwhile risk! I realise that I will need the implant replacing in years to come but apparently recovery from that surgery is just a couple of weeks and they now last anything between 10 and 18 years! If I've thoroughly beaten cancer and am still here then that will be the least of my worries!!
The implant does feel quite hard compared to the real one (as age 50 the real one droops!) but it is beginning to drop slightly as it was a teardrop shaped implant, it doesn't feel heavy.
I no longer wear under wired bras, just padded non-wired which are much more comfortable. Padded crop tops were the most comfortable straight after surgery.
If you have the expander you do have another op to insert the final implant I think but with the pigskin and implant it is all done in one op . My breast care nurse had some photos of the various reconstructions which was helpful and my surgeon talked us through all the options with photos on the computer.
Congratulations on your law degree, hope you thoroughly enjoy your graduation ceremony .
Good luck with your decision making, hope this has been helpful. Nic xx
Sorry you are in this position. Would definitely recommend talking to someone - the bcc helpline is very good and the cancer centre sounds like a good idea. I found the BCC booklet on reconstruction useful too. I did not want reconstruction before first mx (for DCIS). Then had to have second mx shortly afterwards and even more sure I did not want reconstruction as I did not want any more surgery and long recovery times. Unexpectedly needed chemo and radiotherapy after second mx as there turned out to be invasive cells that side so not having reconstruction turned out to be a good thing for me.
I know I won't bother with reconstructions now. Like you I was on the small side and I get on fine with the prostheses and pocketed bras (or sometimes I don't bother and go flat). I do have silicon prostheses but often I use lightweight foam ones. However you are younger than me and it is a very personal decision. One thing I found really helpful was knowing that it is possible to have a delayed reconstruction so if I had changed my mind the option would have been there.
Best wishes making a decision and do enjoy your graduation.
Kaz,you are certainly more upbeat .It looks as if you are eliminating options,and so often with anything in life,a decision will be made for you.You appeared to be a remarkable person,having had vertigo.....how horrible that must have been for you.Continue to talk to support worker,and BCN,they won't necessarily have an answer,you have that.You will get through this.
Can understand you not wanting to be flat,but if you do go down that route you can have an implant at a later date.Yes,you would need further surgery,but you would be in and out before you know it.I had a double Mx and stayed in only in over night.The op itself lasted about 3 hours,so not terribly long.
take care ....xxxxxx
Hi guys, thanks for all your replies. I'm feeling a little bit stronger and positive today then I have done all last week. My masectomy and SNLB is booked for the 19th, but my consultant is seeing me this week as I think he is concerned about my decision to just have a masectomy. TBH I am still in two minds about what to do. I am concerned about having implants and the possible several further surgeries, but on the other hand I think I might feel devastated with seeing a flat chest and a massive scar when I wake up. I had labyrinthitis last year (I was constantly feeling dizzy and having vertigo for 6 months) and it has dented my confidence and self-esteem. I was just getting back to my normal self when I felt this lump. I'm worried that if I just have a flat chest would it drag me down into further depression.
There is a cancer support centre near to where I live. I am thinking of going there tomorrow, and hopefully talking things through with a support worker there. I am also thinking of seeing one of the breast care nurses again before my appointment with the consultant on Thursday. I'm worried in case they think I'm a nuisance with constantly changing my mind!
Nic and Ali - are you happy with your reconstructed breast? Do you have any regrets? Are you in a lot of pain now or has it subsided? Did you have any infections or complications after your surgery? Did you have any revision surgery? How does the implant feel inside your body - does it feel heavy? Are you able to wear the same bras as you did before the surgery? With the tissue expander, would it be painful for months afterwards? Do I need another operation to insert a permanent implant? Would I need to see the PS every month before the permanent implant is fitted? With the pig skin implant, have you had an allergic reaction to the animal skin? How natural looking are the results?
If I was to have an immediate reconstruction, I don't think I will go down the LD flap route as I am concerned about the long term effects of having back surgery. I want to be more active when this nightmare is over and go dancing, and I don't want any restrictions in my movement. I don't think I will be having just an implant as it does look unnatural. So I would be deciding between a tissue expander and the pig skin implant.
Also, from my last visit with the PS the nurse said that she picked up an incidental shadow on my bone from my last MRI scan. She said it was 'highly unlikely' to be anything and the radiologist said the same thing but they want me to have a bone scan. My breast nurse said that I can have that after the masectomy but I don't want to go down the route of possibly having a reconstructed breast and then finding something on the bone scan that would mean removing the reconstruction. Do you think I should insist on doing the bone scan before the masectomy?
On a positive note, I am a proud owner of a 2.1 law degree which I completed this year after 6 years of hard work. Due to what has been happening, it was touch and go whether I would be able to attend my graduation ceremony next weekend, but I think I will be able to. So at least I have something positive to look forward to this week!
Sorry about the long post again!
All surgery there is a risk of complications,however,not always....my thoughts are,and only thoughts,is to have the mastectomy,then decide ....like you,I was so worried about surgery,I cried all the while leading up to it ....however,once I came round I was a different person.....had several lots of surgery since,no problem.I had DCIS,twice,both sides !!
I can identify totally with all of us on this thread ,however,sometimes it is easy to overthink,and look at what can go wrong,not what can go right.
gentle hugs ...😍
Hi kaz ,
Hope you are not too stressed . As i said before i had to make a quick decision as soon as possible whether to have a tissue expander or leave it until later and have a flap. Two weeks to decide from diagnosis to the op isnt a long time to decide and you feel like you are on a rollercoaster but you want to get off .I understand that nothing appeals to you at the moment because you are terrified which is understandable. i still feel that it is all surreal at moment .But i know there are a lot of different factors that make the process a lot easier . It does help if you have the right information available or being able to ask your breast nurse anything you are not sure about .Also having a good network of family and friends to support you along the way. From my experience of the process it is best to take baby steps one step at a time , deal with the now and dont think too much about 6 months or a year down the line because it will drive you mad.
It is a very scary process and i felt like i had lost all control it was taken away from me and i felt so vulnerable. But as far as you worrying about you other breast matching the reconstructed one ,i asked my surgeon what he will do and he said that before he would operate on my other breast he would try his best to make the reconstructed breast match the other one so as not to have to operate on the unaffected breast. Which i thought was brilliant . This means less ops,which is good for yourself as you arnt too keen on hospitals.
It was 21st july this year when i had my op which wasnt that long ago ,i thought i wouldnt be able to cope but i am getting there and it does get better.
When you do get in a relationship the will love you for you and if they have a problem with that they are not worth it.
Kaz i wish you all the luck and you will get there in the end . It definetley wont be easy at first but it gets better. feel free to ask me anything .ali x
Hi Kaz , sorry to hear about your diagnosis at such a young age. I was also diagnosed with DCIS in Jan this year age 50 and needed a mastectomy. To start with I didn't think I wanted to bother with reconstruction but then I changed my mind and I had immediate recon using the pigskin and implant. I am only small busted 36 b and actually the result is very good now it has settled and the swelling has gone. It is totally numb and still a bit painful at times but it is good to feel confident in clothes and to be honest even without them! If you want to know more about the procedure please ask any other questions! Nic xx
I am also new to these boards but today this is my 3rd post on a different question . It is roughly 11 weeks since I had my mastectomy and I had to make the decision to immediate reconstruction or not . Me personally didn't want to wake up to a flat chest and I am so pleased now that I did get the tissue expander in I think I would have regretted not getting it done . At least I know that eventually next year I will have enough skin for my reconstruction . I was mortified the thought of a chicken fillet in my bra (so to speak) I think I would have been worried about it falling out etc Sorry for the short response as my battery is going to die but I will respond again to your post when my ipad is charged again.
Hi, I am new to these boards and I was wondering if anyone could advise me please? I am 31 years old and have been diagnosed as having non-invasive DCIS. Due to a recent MRI scan, unfortunately the DCIS is too deep to do a successful lumpectomy, so I am having a mastectomy. I initially thought about having an immediate reconstruction but after seeing the plastic surgeon this week I am having serious doubts about having the reconstruction.
Firstly, I am very slim and the PS said that I would not be a good candidate for the abdominal tissue reconstruction as I do not have enough excess tissue in that area. He said I could have the back flap but I would need an implant. I am also very slim on my back, and I do not want to risk losing any mobility or having future problems in my back. The PS suggested I could have the tissue expander reconstruction but this would be very painful. He then went on to suggest the pig skin implant which he said was very new and he has only done this a couple of times and it was too soon to tell whether the results were good or not. The last option was a simple implant but he said this would look unnatural. I am a bit concerned about having implants due to having a foreign body inside me and the possibility of rejection, whether the implant will leak or rupture and having further surgery to replace the implant. He gave me a silicone implant and it felt really heavy - too heavy to be a good replacement for my breast as I am only a size 32 A/B. He outlined all the possible complications and infections that may happen after the op, which scared me a lot. The nurse showed me photos of patients who have had reconstructions, and although there were a lot of really good reconstructions, there were also some really bad results that if it happened to me I would be really upset with.
My main concern is that the masectomy will be my very first op I have ever had and I am very nervous about operations and hospitals in general, to the point that I have mini panic attacks in the waiting room from just going in to see the consultant!. I am dreading staying in the hospital overnight as I know I will not like it. Also, if I choose to have a reconstruction, the hospital where they do reconstructions is miles away from my home and I will feel very uneasy being so far away from my family, especially after having a major op. I also do not know how I will feel if I have a reconstruction...I know it will never be like my natural breast in terms of shape, feel etc. and will I like the results after such a long op? I am reluctant and scared to have more surgery if anything goes wrong with the reconstruction and I need a revision. I do not like to idea of the PS operating on my healthy breast to create symmetry.
I spoke to my breast care nurse yesterday about my fears, and she showed me some prostheses that I could use as a alternative. The prosthetic was a lot lighter then the silicone implant and even has a nipple! (I will lose my nipple as the DCIS lump is very close to the nipple). The breast nurse said I could put the prosthetic inside a pocket of the bra. I know my breast surgeon would like me to have an immediate reconstruction as I am so young and having a delayed reconstruction would have a less cosmetically pleasing result. My fear of going down the prosthetic route is how will I feel physically seeing that I do not have a breast everyday especially after a shower or getting dressed for bed? Will I cope with having the prosthetic...would it move around a lot, could I do activities such as exercise and dancing and would people notice? I am currently single with no children, so I need to look to the future and ask whether I would find a guy who could accept me for not physically having a natural/reconstructed breast?
I honestly do not know what to do for the best? At the moment my surgeon is saying that I do not need chemotherapy but I may need radiotherapy if they find something other then DCIS. What are your experiences with having a reconstructed breast or using prostheses? I know a lot of young ladies go down the reconstruction route like Angelina Jolie, but I am so scared of hospitals and operations that I am having serious doubts over whether I can be that brave, especially as the reconstruction op is more painful and can have serious complications.
Sorry about the long post!