30 yr old requires help with reconstructive decisions please!

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Hello everyone,

I know there have been a lot of similar posts previously, but I am after some advice.

I am 30 years old, and was diagnosed with DCIS & Invasive Ductal Carcinoma in September. I had immediate chemotherapy, the FEC-T regime, for 4 months.

I am receiving Herceptin injections every 3 weeks as my cancer is HER2 positive.

I am now in the surgical phase. I was told I was eligible for a lumpectomy, which I refused. For me, the right thing is a double mastectomy, which has been agreed.

2 weeks ago, I had a skin sparing mastectomy on the affected side, with a tissue expander inserted, and a sentinel node biopsy. Once my histology results are back, they will decide if I will require radiotherapy - my lymph nodes were clear (thank goodness), so hopefully the margins of the breast tissue will be too.

The tissue expander hasn’t been expanded completely yet - 300ml at the moment with the intention of a 450ml max…

I now need to start thinking about reconstruction. I am a size 10 with 32E boobs. I am happy to go smaller. My feelings so far…I really do not like this tissue expander - it feels completely alien, heavy, inflexible, and I hate feeling it through my skin …ladies who have had implants, is this how they feel?

The surgeon says I don’t have enough tissue on my belly to use, so other options would be LD flap, and TUG (thighs), or buttocks. I’m not particularly worried about scarring, but I am worried about the side effects of using other areas of my body - I don’t want to suffer with back problems as a result.

So if possible I would really like to hear from ladies who can advise on how implants feel to them, any problems they’ve had, ladies who have had LD flap reconstruction, and anyone who has experience of use of thighs/buttocks, and additionally anyone who is of a similar age and has had to make the same decisions.

I am confident I have made the right decision in requesting a double mastectomy, and have a very supportive Plastic Surgeon who has said he will do whatever operation I am happy with - which kind of makes it harder! I have done lots of research but would really like input from real people who have been through it.

I never thought it would be the reconstruction part that kept me awake at night - I’ve managed to maintain the air of “normal human being” up until this point, but these choices feel very weighty on my little mind.

Help much appreciated,

Bx x

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Hello Bx1984

Welcome to the forums, this must be a very difficult time for you. 

As well as the support you will receive on the forums we also have a free helpline where you can talk things through with a member of staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

We also have our ‘Someone Like Me’ service which is telephone or email based support with a volunteer who may have had a similar diagnosis/treatment  as yourself.  Here is a link for further information on this service, breastcancercare.org.uk/breast-cancer-services/someone-talk/one-one-support

With best wishes

June, moderator

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Morning.

 

I had a lumpectomy at age 29 and some years later had a small implant. I am a 34B. (Ooops, was a 34B, expecting to become an A when swelling goes down again and an A/AA?? When silicon is removed)

 

I was happy with my shape (when stood up!) but the silicon has never felt normal. Having it in only one side probably made it more noticeable for me. Lying in bed on my chest has always felt like I’m lying on a bean bag, i.e. something hard. Lying on my back sunbathing the implant boob sits pert whereas my natural one disappears flat against my chest. And in the ‘bedroom’ the silicon one doesn’t get as much attention! :wink:

 

I’m sure I was never told the sort of problems implants can have though maybe I was so set on having volume evened out I didn’t listen or remember. I would recommend researching the expected life span of an implant and what problems can occur, even from very early.

 

I’ve just begun the journey all over again having been diagnosed with stage 1 dcis, node clear, in the other breast. I’ve had 2 wle and I’m planning on going down the ‘get the silicon out’ route to even myself up again. I’m also happy to have the silicon out as I started getting capsular contractor about a year ago. Oh the irony… I decided early Dec 14 that I would ask for another plastic surgeon consultation in the new year only to have a mammogram recall on 31st Dec and start on this new journey. And basically, I don’t like the feel of it, I’ve been in a very stable relationship for 10 years and my fella accepts me how ever I am.

 

I can’t offer any advice on reconstruction using your own tissue sorry.

 

Going through diagnosis, treatment and surgery all seems to happen so quickly though with having months of chemo you have had a little longer to think about surgery.  But it has still not been long to have to make such huge decisions plus you were going through chemo so probably had plenty of other stuff to deal with.

 

Personally, for me, I couldn’t bear the thought of tissue taken from elsewhere because of the extra scarring and possible muscle issues.

But I’m no longer happy with the foreign feeling, problematic implant and hope having it removed is not too difficult. I’m looking forward to only having me in my skin.

 

My advice is don’t expect to make a decision and for everything to be right. Be prepared for the fact that your body has been changed and you might find what you thought was the right choice hasn’t given you the result you expected.

Some choices are easier to reverse than others.

 

 

 

 

 

 

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Hello there

Reconstruction can be a real dilemma can’t it  (I always thought it would be the nicest and easiest part of the journey!).

 

I started off with a TE (single MX) and to be honest, detested it. It felt exactly as you describe, heavy and alien - just horrid.

 

I then moved over to the LD flap after failed TE surgery. So, muscle taken from the back and pulled round. I also have an implant inserted ( not enough muscle or tissue to form a decent sized matching breast). I don’t suffer from any loss of movement at all and have full control of my arm and swim several times a week.

 

The issues for me are 1. The scarrring  and 2. The feel of the implant. These implants are widely used as part of reconstructive surgey and we are almost getting to the stage now where they are becoming accepted as new replacement ‘breasts’! Mine feels like a cross between a bean bag and a rock on my chest and it has been is situ for 3 years. The only thing it DOES give me is shape. I can swim and wear what I like,without having to think about prothesis or such like. I have no sensation in the ‘breast’ or the nipple (also reconstructed) so it also receives 0 attention in the bedroom!

 

Judiith has hit the nail on the head, your body has changed now and it is all about finding something which YOU can accept for the rest of your life. Do your research and ask the questions. I was so ill informed at the time, all I wanted was symmetry, nothing else really mattered. Well lots matter now, but there is nothing I can do, other than continue to strive for acceptance of my new body and appearance.

 

I was 37 at the time, so a bit older than you. I can’t speak for own tissue reconstruction,but many ladies on here refer to the DIEP for example, as the gold standard of reconstruction.

 

Very best of luck… it is not easy at all I can appreciate, but there are at least a few options to consider.

 

Naz x

 

 

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Hello all

 

Have implant following mx - though mine was immediate with strattice so no tissue expander and fills - just straight in with the implant.  Again, mine also feels like a cross between a rock and a bean bag.  I am one year on from recon.  Looks great in clothes.  Feels alien.  Didn’t have a choice though as not enough flesh to make one from the rest of me!  And given the state of my thigh following fat transfer I think I am glad I did not have any other bits of me cut up.  Of course it feels a lot better than it did back in the early days but it still feels strange.  No nipple but using the stick on ones and that makes a big difference to how I feel. 

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Hi Bx, I’m Lisa, 44 and 8 wks post bilateral mx with immediate LD recon with implants. Mine was also due to DCIS and I elected to have preventative bilateral due to family history.
If I’m honest, recovery was harder than I’d anticipated but I think a lot of that was because I thought I was super woman! My back is still tight but hugely improved over the last week or so. It feels very similar to wearing a bra that’s too tight, without the relief when you take it off - if that makes any sense?? It’s uncomfortable more than painful now but doesn’t stop me doing anything. I’ve done the exercises I was given post-op every day and would say I have very nearly full range of movement from my arms & shoulders now. I’m sure keeping as active as possible is the key to a good recovery - within reason obviously, I really couldn’t do much for the first couple of weeks.

The implants I only really notice discomfort during the evenings/nighttime - not sure if that’s because I’m tired - and then they feel heavy. It’s also a bit weird having no sensation there at all. I’m in normal bras during the day now and still wearing sleep bras at night. Not comfortable at all bring unsupported. I’ve not been able to sleep on my side since the op either. I’m still propped up on a multitude of pillows!! I did try sleeping on my side but just felt as though everything was being pulled; not comfortable at all. And I’m still on Tramadol at night, mainly due to my back. But no pain relief during the day now.

As for how they look, very happy. The scars are healing really well (twice daily massage with bio oil) and the shape and feel of the new boobs is great (I was an A cup & now a D). I’ve got to to back in a couple of months for “tidying up” and potentially nipple tattoing but all in all, it’s veen a good result visually. The scar on my back sits underneath my bra strap so is only visible when I’m undressed. It is big though, pretty much the width of my back.

hope that helps in a small way & if there’s anything else do ask, I wish I’d found this forum pre-op!!