31 year old DCIS pt having Mastectomy - to reconstruct or not?

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!

 

 

 

 

Hi 

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 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

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

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 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!

 

Kaz x

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!!:slight_smile:

 

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,
Snap I was too thin to take skin for reconstruction
The only place plastic surgeon could take skin and muscle from was my back…
Not an option has I play golf and was told I would never play again.
Pigs skin I was told about but I am stupid and when I was told I had cancer started smoking
Not cool and I know Very Stupid
My surgeon however was Cool and offered me to titanium mush with bag implant.
I was unsure like you I never had an op before
I did a bit of research and titanium they use in knee and hip op…
So I decided to go for it and it works :relaxed::relaxed::relaxed:??
I am 12 weeks post op and I have been swimming in a 2 piece and on holiday.
Nothing is easy but try and be positive know it’s hard sometimes.
Today they put the rest of the fluid in the bag in my bloob I had heard how painful it would be I was worried…
So my friend and I went for lunch first and I had a couple of glasses of vino ( I checked with BC nurse first)
I arrive at hospital in a great mood…
Fluid was but in bloob whilst me and my friend laughed and told jokes.
The BC Nurse congratulated me on being so good.
No pain I think because I didn’t focus on it…
You will be fine I promise just focus on getting yourself through this…
Your young why wait your having an op get it all done at the same time.
The sooner you start the quicker you can enjoy life
Good Luck xxx

P.S I am a young 50 year old
Who has a great social life my bloob is fine
Yes I have a scar that is fading…
All I can say is why wait for reconstruction it is better they use some of the skin you have on your breast.
For me personally I think it would be worse to have gone back later for reconstruction.
Well done with degree xxxxx

Hi Kaz

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

Angel x

Hi Kaz, sorry to hear you diagnosis, I was diagnosed with DCIS as well back in July., aged 43. I had never had any surgery before either and originally asked for immediate reconstruction to get it all over with at once,but unfortunately there was no plastic surgeon available to discuss it with until mid October so I decided to go ahead withy mastectomy and go for reconstruction at a later date. I have only been fitted with my prosthetic about 4 weeks and have no problems with it as long as I wear a post surgery bra. Hope all goes well for you what ever you decide. Hop this helps sending you big hugs Katrina xx

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’m 43 and had strattice reconstruction. …I am very pleased. If you want to speak to me in private let me know. I went thru hell deciding but I’m very happy…I’ll happily speak to you

Hi kaz, I was 47 when I had my mx in sept last year. I had immediate recon with silicon implant. Yes it’s a foreign body, but I’d rather it inside than using a prothethis. I do a lot of sport and run around with kids - I do nt want the risk of my boob popping out!!

Having said that, it wasn’t without complications. I got an infection during chemo and had to have the implant removed. The surgeon left the skin so after chemo she out in an expander and as my skin had been stretched before she was able to inflate it in one sitting before I started rads.

It has not been painful or caused any problems. My decision now is whether to leave well alone or risk the complications if further surgery to replace with aa more natural implant.