Reconstruction choices

Going through breast cancer treatment Surgery
1

Hi everyone,

I have been reading messages on here for a few months when I was first diagnosed with DCIS breast cancer but this is the first time I have been brave enough to actually write a message. Compared to many of you I am one of the lucky ones. I was diagnosed on 7th October (following a routine mammogram) and had a left sided mastectomy and lymph node biopsy on 27th October. I had my results appointment on 2nd Dec and they gave me the all clear, it hadn’t gone into the lymph so I am cancer free. I am only 6 weeks post surgery and just feel I have been on a high speed train, unable to get off and now I have been allowed to get off I am a bit lost.

All my appointments have been during COVID adding an extra complication. I have not yet been fitted with a proper prosthesis as this clinic is currently closed. I was unable to have reconstruction surgery at the time of my op also due to COVID.

I am now wondering about reconstruction surgery (it may not even be available until later in 2021) or if I am happy with my ‘1 boob’. Unfortunately I am a bit out of proportion, a petite lady but with a FF cup size so when I get undressed and am without the softee I do feel very empty. I haven’t yet had experience of what a prosthetic boob feels like. I think I have decided that I am not willing to have the reconstructions using my own tissue as it just sounds too horrendous and I don’t think I can go through this amount of further surgery. The surgeon has already said that whichever reconstruction I choose they will certainly have to reduce the breast that is left to match.

I am wondering about implants (ending up with a smaller breast size) as it seems less invasive although everything I have read seems to suggest that it doesn’t work well to have done at a later date? I don’t know if there is enough skin left for it to be successfully expanded, or if it will look at all natural? I’ve read about mobility being limited after implants too. I just don’t know what to believe so thought I’d ask someone who might have some experience.
I know that I have time to think about all of this but wondered if anyone out there had been in a similar position and could offer any advice to me regarding implants fitted post surgery or whether I should maybe just embrace having one.

thanks x

2

Hi Fabulous50 - a very big welcome to this lovely forum, I’m really glad you have joined and hope you will find lots of support and advice on here. It really is a safe, non judgmental place to post. In addition to all the lovely members, you might also want to call the nurses on here (number at the top of the page) if you have medical questions.

The feelings you have now are very normal, you describe it perfectly as getting off a high speed train and feeling lost. I was warned about that feeling while I was going through treatment but it’s only once treatment stops that you can really understand what was meant. One minute you are having endless appointments and then you are abruptly set free and are on your own. You need to give yourself time to process what you have just been through, both physically and mentally. There is a great article - workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf (credit to @Jaybro  for first sharing this link with me) that you might find helpful.

I had my treatments and surgery in 2016/17 and had an implant at the same time as my mastectomy, so I would be happy to answer any questions about implants, but I’m sorry I can’t help with what it’s like to have one later on. Mine doesn’t quite match my original one, but I’m happy with it. I use a partial prosthesis or foam cup to even them up in bras, so you can’t tell when I’m dressed. I don’t find mine restricts movement at all. I also chose an implant because of the shorter operation and recovery time, but it very much depends what is most important to you, it’s very personal. 

See if you can have a look at photos of what implants and own skin reconstructions look like to give you an idea, your surgeon should be able to show you some previous examples.

It’s very difficult with Covid preventing you getting fitted for a prosthesis - the one at my local hospital is still operating, so maybe give yours a call and find out when they will start again. I haven’t used them, but I have read lots of good things about a charity called Knitted Knockers, where lovely people knit prosthesis and send them free of charge. Maybe google and contact them as a start?

I hope others will come along with to share their experiences and opinions, but please feel free to ask me any questions, about anything at all or just chat. Very best wishes and hugs, Evie xx

3

Hello Fabulous50,

I wanted to write to you as it’s sounds like you have been through similar to me at similar times. I too was diagnosed in October. I saw the GP with 1 lump but further investigations revealed I had 3. Everything happened so fast and things are now starting to slow down.

In November, I had a mastectomy on my left side and a sentinel lymph node biopsy, but I was lucky that in my area they were able to do implant reconstructions at the same so I was able to have this. I am now 3.5 weeks post surgery and had my results appointment on Dec7th, I got the all clear about my lymph nodes too - yay. I have been told my cancer is DCIS stage 1, grade 3. I am now waiting for an appointment to finalise treatment but I have been told I’m likely to need chemo and radiotherapy. This will hopefully start in January. Do you know if you need treatment too?

I agree that COVID has made everything so much harder. I really do feel for you not being able to have reconstruction at the same time. I’m afraid I can’t help in advice regarding having a reconstruction at a later date,I’m really hoping someone will be able to help you with this soon. Like you I ruled out using my own tissue straight away due to increased risks. Regarding my own Implant so far I am really happy with it. I have had it on top of my chest muscle so in time I will have full use of my muscle. Despite still being bruised you really can’t tell at all that I have an implant when I am clothed. Even when wearing a bra they are a very close match. I think my implant does look natural. My mobility regarding the use of my left arm has been limited but I am doing the physio exercises every day. I can now lift my arm straight up (slowly) without any pain which makes getting dressed easier. 

When I first found out I needed a mastectomy, I was expecting a lumpectomy originally, I said I didn’t want any reconstruction at all as I just couldn’t imagine it and wanted minimal fuss. However I had a chat with my breast cancer nurse and she was great at making me realise the benefits. I am 43 years old and I’m so pleased I made the decision to have an implant. I’m really sorry you had this decision taken away from you. However I would definitely recommend to you having an implant reconstruction when you are able too. One positive thing for you, is that my consultant did say to me that women who have delayed reconstructions are generally happier with the result as they have the time to consider things.

Wishing you all the best with everything and I really hope things work out for you. 
Xxxxx

4

Hi Fabulous 50 and congratulations on your first post!

There’s excellent advice from Evie. I just wanted to add a couple of points, though I can’t help with reconstruction as I’m proudly monoboobed and, owing to the pandemic, getting far too used to being lopsided!

If you follow up the Knitted Knocker suggestion, make sure you follow the link to Knitted Knockers UK. I can highly recommend their Aquaknocker for swimming. It lacks weight so you don’t get detached from your boob as soon as you dive in lol. If you are used to using your softie, you may find the kk too light for you, considering your cup size, but they are free of charge so it’s worth filling in the form and receiving their heart-warming gift,

My hospital has continued its prosthesis service and I’ve recently been fitted for one to match my newly-increased breast (thanks to anastrozole). The advantage over a softie is that the prosthesis not only matches the shape of your remaining breast but also has the weight. Mine feels heavy in my hand (D cup) but, once in a proper bra, it just feels right. But I never formed a good relationship with my softie… The main thing is that you can be sure of balance.

In a proper bra (post-surgery or mastectomy bra, such as by Amoena or Nicola Jane), you don’t feel the prosthesis against your skin. Put into an ordinary bra, the silicone will feel sweaty or tacky against your skin. The prosthesis, because it’s not anchored, is likely to slip slowly across till it’s not in the best position so a mastectomy bra is wise.

I was told that I could opt for a reconstruction any time and they would draw muscle from my back shoulder. I’m staying as I am. I wish more of us would feel good enough about ourselves to face the world with one breast and a scar but…

I hope you find something you feel comfortable with. Feeling good about your body is essential. All the best,

Jan x

5

Hi @Fabulous50  

Sorry for late reply but I’ve been busy living life and having surgery (both very good reasons am sure you’ll agree!!).  Anyway welcome and congrats on yer first post.

I don’t come here that often as finished my short term treatments earlier this year (chemo, rads, mx in one, lumpectomy in other and ANC).  I just wanted to tell you that as someone who had a DIEP reconstruction 2 weeks ago it was really straightforward, no pain, great medical team and recovery is going super well, I am very mobile and able to walk for about 2 hrs every day (my plastic surgeon does keep reminding me to slow down!!) with no after effects.  I am sorely missing my bike rides and runs pre-op though but they’ll return soon. Am still not as quick walking as I was and a little hunched but getting better every day.

I consider myself lucky that chemo & early surgeries were all pre covid, not sure I would have had as much fun otherwise - and yep, I did, in the main, find treatment good fun, meeting new people, taking life slower, new perspectives & all that.  Lucky not to have bad side effects though.

So yes there are risks with DIEP but there are also risks with implants too, I chose DIEP as more natural (warm boob, grows with you) and added bonus (for me) recycling excess stomach mass (its never been so flat!) and I do come across a number of ladies who’ve had implants and have then gone on to have a DIEP for various reasons.  The op is a long one (8 hrs for my delayed one) but doesn’t really matter as you’re out of it!  I found the ANC operation more challenging in terms of recovery afterwards & ongoing discomfort to be honest.  What is really helping my recovery this time is being fit before, eating healthily and drinking lots of water.

Worth adding that I was quite happy and got used to just the one boob but as have private medical care I progressed with DIEP, if I’d had to wait on NHS no problem but was in no particular rush to have 2 again, in fact it still feels quite odd having a RHS one again. And on the prosthesis front I hope your hospital is better than mine, I had rads May, prosthesis fitting Nov and received prosthesis 4 days before DIEP op! I really had to nag them to get on with it. Still wanted it in case op didn’t go ahead.  The prosthesis are great though, so much more life like and fitted than the softies and I found it really comfortable to wear, and as its a solid weight it doesn’t try and escape.

Anyway, I’d do some more research as its a big decision but luckily (!!) one that you can/may have to take your time making, happy to point you in the direction of a really supportive group (private message me) of many ladies who’ve had both if that would help.  Good luck.

Sam