MX and immediate recon?

Hello

I first posted on the Forum last week when I was diagnosed with DCIS and an mx was suggested. This was an incidental find and the mention of an mx floored me. They did another biopsy to try and establish the extent of the DCIS but what they’ve found are some invasive cells and so they are positively recommending an mx.

I’d tried to prepare myself for the worse by thinking that at least I’d be able to have an immediate recon. But they tell me that because my situation is complex, they won’t know if I’m going to need chemo or rads until after the mx. In which case, an immediate recon would not be advisable because the rads could damage the implant.

I’m having a sentinel node biopsy next week. If this is positive I will need rads so the decision will be made for me.

Please will you share your views on this.

Thanks very much.

Hi White Daisy

So sorry you’ve had to join this club.

Here’s a link to a thread you might find interesting…

share.breastcancercare.org.uk/forum/viewtopic.php?f=34&t=33773&p=587163&hilit=recon#p587163

As you can see, opinions on immediate recon vary! It’s a diffucult decision, but one that is yours - just make sure that you have all the facts/possibilities before you make it.

Good luck - I’ve now had the ‘full works’ - mx, immediate recon, chemo and rads, It’s hard, but doable. Do ask any questions you want.

Dx

Thanks very much for that, DJ007. The discussion was really helpful.

I’m going to have the sentinel lymph node biopsy. I know that won’t tell me definitely ‘no’ that I won’t need rads or chemo, but if I’ve understood correctly, it will tell me a definite ‘yes.’

The other thing I would appreciate advice on from anyone is the choice of surgeon. I’ve been told if I’m just having the mx I can chose the surgeon (not if I have the mx and immeadiate recon because there’s only one at my hospital who does that). But how do I know who to choose? Is there a way I can find out if they have a good reputation or any other info which will help me chose?

Thanks

White Daisy

Hi White Daisy

Another complication to throw into the pot - it isn’t always the same surgeon who does the mx and the recon. I had a ‘double act’ - a ‘breast disease’ surgeon who did the mx and node clearance and a PS who specialised in recon. Onco/plastic surgeons are more common than they used to be, but not universally available!

I believe that you are now meant to be able to choose which hospital you go to, if your hosp doesn’t do what you want. - I sometimes think that, with the best intentions, we are only presented with the ‘easy’ options.

If you know the names of the surgeons, this is one instance where you can Google them. Most will have professional listings where you can look at their qualifications, previous experience etc. The other ting is to post on here your area and ask people to pm you with any personal recommendations - we are not allowed to name individual medical professionals in the open forums.

HTH
Dx

Hi White Daisy,
just wanted to say that I was in a similar situation as you a few months ago. I was diagnosed with a large area of DCIS. I had a SNB which was clear, so decided to go ahead with the mastectomy and immediate LD reconstruction (which has been very successful, by the way). I was told before surgery that I wouldn’t need rads. When the pathology came back, areas of microinvasion were found, which were hormone negative, so I started 6 x FEC-T chemo and because they were unable to get clear margins after the mastectomy (close to chest wall), I will also be having radiotherapy. I suppose what I am saying is that my experience has taught me that nothing is certain. Until the results from the path lab are back, no one knows for sure. All we can do is make the best decision we can at the time, with the best information we can get.
Best of luck with it all xxx

Hi White Daisy

The first thing I would say to you is slow down! I was in a similar situation to you three years ago. Ideally I wanted to go into the operating theatre with two breasts and come out with two. It got too much for me coping with the diagnosis and deciding what sort of reconstruction to have that in the end I decided to just go for the mx and get any further treatment out of the way before deciding on a reconstruction.

Three years on I am coping with my mx and have decided not to have a reconstruction. I, like you probably, can have one at any time in the future.

Be kind to yourself, and take one step at a time.

Love
Maude xx

Maude makes a good point.

I ended up with what I did because it was offered and made easy - it’s only since then that I’ve realised how lucky I was in the team that I got.

It is very much a personal decision, with no right or wrong answers.

Dx

Hi White Daisy

I had all options available to me before surgery. Initial biopsy showed grade 2 HER2 receptive and ER+ with clear nodes. I was offered chemo before surgery with the hope the lump would shrink enough to enable a WLE (no guarantee) or immediate MX with or without recon. I’ve had breast cysts for over 20yrs and had a lumpectomy age 22 so my breasts have never been the fav part of my body. I decided that I would have an immediate MX and would decide on recon later after my treatment was over. An SNB was done during MX surgery and of the 4 nodes they removed one showed signs of cancer, the lump was also very close to the chest wall and so my treatment will now include Rads to both the chest wall and armpit.

The hardest part of all is that although their are so many of us going through this no two people are the same and what is right for one may not be right for another. My reason for not having recon was simple I wanted *it* gone and to get on with the next phase of treatment. The possibility of recon slowing my recovery and the risks of complications was (for me) too high. I think that physically being able to see the cancer has gone has helped my recovery and with the softie in place to the outside world you wouldn’t know I’d had an MX. I saw a friend the other day whilst I was out shopping and she asked ‘when are you having your surgery’ my reply was ‘one week ago’, silly but it really made me feel good and she was genuinely surprised. My OH has been fantastic, I unveiled the new me to him a couple of days after surgery (I needed my back washing!!), my daughter checks me before I leave the house just to make sure I’m even and M&S do a lovely range of post-op bras etc (VAT & postage free) so I don’t feel any less feminine than before and I still have the option of recon if I choose at a later date although at this moment in time I don’t think I will it is nice to have the option should I choose.

If it would help talk to your Consultant or BCN and ask if they have any photos of the different types of recon and those that didn’t have recon and ask if it’s surgery they’ve done or another surgeon. I found it really helpful to see the end result before I made my decision and as Maude says slow down, take all the time you need to make your decision, it’s your body and no one else can tell you what you should do. Don’t let them rush you, allowing yourself time to think about your decisions will I believe help with the healing process. My consultant said I could change my mind at any time as long as I let him know and as long as it wasn’t as they wheeled me into theatre!!

Be good to yourself
L4W

Hi White Daisy

Just to let you know what I decided when I was first diagnosed.

I was told initially from a needle biopsy that I had invasive ductal carcinoma. I had a WLE first of all and reconstruction wasn’t mentioned. Unfortunately when I got my results I also had extensive high grade DCIS and the margins weren’t clear, so I had to have a mx. I just wanted to deal with the cancer and any treatment so didn’t consider an immediate recon. I could have had one if I’d wanted but they did point out the problems associated with implants and rads. There is so much to deal with initially I don’t think I personally would have coped. But everyone is different.

I took 2 and 1/2 years to make the decision to have a recon and that gave me plenty of time to reseach which one to have and the surgeon. I ended up having a diep flap as I didn’t like the thought of an implant. I now feel more balanced, find shopping for clothes easier and have less of a visual reminder of what I’ve been through. But there are loads of women out there who are really happy with their bodies post mx. The recon isn’t a boob - there is no sensation there and I have a oval scar. But I’m glad I had it done.

I know that the decisions I made were right for me at the time.

Hopefully someone who did have an immediate recon will respond and give you their experiences to help you make that decision.

Good luck

fantan

Thank you so much everyone!

What you tell me makes so much sense. And Maude, you are right, I am going too fast. To give an analogy of a lighter kind, a puncture in the wheel of my wheelbarrow has demonstrated to me that there’s not point in pumping it up again until I’ve got all the thorns out which caused the problem in the first place!

I’ve told three people at work - two of whom are fellas. I told them that I’d tried to cope with everything by thinking that I could have an immediate recon because I didn’t want people to be able to tell I’d had surgery. One of the chaps told me plainly if I was wanting the immediate recon for the sake of my appearance that was wrong. Speaking to the others separately, they also in effect gave me the same advice.

In short, ladies, I’ve got my priorities wrong, haven’t I? I’ve started to think that maybe my preoccupation with the recon is a defence mechanism. It’s the only thing in this whole lousy situation which I think I’ve got any control over.

As you’ve also probably gathered, I’m not handling it very well. On the furious/distraught spectrum I’m all over the place. One minute I feel really irritated and the other I want to curl up in a ball and weep.

I have dates now which has calmed me a bit because I’m obsessively organised. SNB 22Oct and the ‘main event’ 4 Nov. But I will make sure my overriding priority is to make sure that I do everything to aid and nothing to prevent the total eviction of ‘this most unwelcome guest’ whose taken up residence in my right breast.

Thank you again everyone for taking the time to share your stories and advice. x

Hi White Daisy

I don’t think you’ve got your priorities wrong, you’re just trying to get your head round all this and it’s hard. I really do feel better since the surgery and although I decided not to have recon I’m not confident enough to leave the house without my softie. I don’t wear it at home but if visitors arrive in she goes! I haven’t told many people (very private person) so it’s my way of showing to the outside world that all is well. I don’t think I do it for myself or the sake of my appearance, I just feel more comfortable looking ‘normal’ (I’m really starting to hate that word!!). I’m like you and can be obsessively organised and found the waiting for results etc really difficult so I spent my waiting time getting ready for what lies ahead. I have lists of things that might help and have bought a few necessities. I’ve also finished all those little jobs that I know will irritate the hell out of me if I’m unable to do anything :wink: So for now I’m happy with the decisions I’ve made but there are two sides to every coin and what Fantan wrote really struck a chord with me. Whilst for now I need to see that the cancer has gone, will I want the constant visual reminder that I’ve had BC for the rest of my life, time will tell!

Take it easy and I’ll have everything crossed for you on the 22nd :slight_smile:
L4W

Hi White Daisy

I am pleased our posts have been helpful.

As for you not handling it well - don’t be so hard on yourself. Three years later I can sit here being calm and wise (hopefully!) but I was exactly the same as you when I was first diagnosed. It is a shock and a lot to take in. I went through every emotion before coming to my final decision to have a mx without reconstruction.

You seem to have got some very sensible advice from your workmates too.

Love
Maude xx

Hi I thought I’d throw my experience into the pot! I had a mastectomy and immediate LD flap without implant at the end of June. My oncoplastic surgeon suggested no implant so it would look more natural i.e. droopy like my other one!I decided to go with his recommentation and thought that if I didn’t have immediate recon I wouldn’t be brave enough to have it at a later date.Nearly 4 months on I’m sure I made the right decision although new boob is quite a lot smaller than the original.BS has now said that hopefully in Jan he can either put a small implant in or take more tissue from somewhere to increase the volume and I will also need lipofilling to correct the dents at the top of my breast.Bear in mind that if no implant is used then there is a chance that the new boob could shrink as much as mine has and mine’s gone down two cup sizes-not enough to fill an egg cup! What ever you decide I’m sure it’ll be the right decision cos we can’t live with regrets. That’s no help to us at all.x

Hello Ladies /Chickengirl

I’m now approaching a similar position as Chickengirl. Mastectomy with immediate reconstruction, using own tissue/fat. Now waiting for a scan to be done on abdominal area to check if I’m fit enough and suitable for this operation, then I suppose have to wait again for the actual operation date at Charing Cross Hospital. Has anyone else had a similar operation at Charing Cross? I originally had my tumour lumpectomy in June at Northwick Park Hospital in Middlesex, but I am informed Charing Cross has good surgeons who can perform this operation. What a lot of waiting always, what we have to go through, I’m suprised with myself sometimes even though being anxious everytime I have an appointment.
Can anyone suggest what I should expect after the operation, pain wise and what to wear in hospital and when I return home? I know everyone is unique and we are all experiece different procedures but would be very interested to hear from anyone.

love from
HamletXXX

Hi Hamlet As far as what to wear in hospital then I would definately recommend front fastening pjs cos seems like someone is constantly wanting to look at your new boob!I got some from Primark cos didn’t want to spend a fortune on something I didn’t think I’d wear again. Hospital said it was best to wear blouses post op cos less chance of pulling stitches etc. this was good advice and I’m glad I took it.As for the pain as you said we are all different and have different pain thresholds. I thought mine was quite low and I’m sure my dentist would agree with me! But I did find I had more discomfort than pain. I was put on paracetemol after the op and took those religiously for 5 days then decided to try without and found I didn’t need them. My advice would be to take whatever they offer you in hospital cos there’s no point being in pain and then just see how it goes when you come out. Remember to take it easy and that should help with the healing and hopefully lessen the chance of pain.x

Hello Ladies

Like White Daisy, there is a lot to think about, plenty of time to decide what you want to happen. Eventhough sometimes you are forever waiting it seems when you have made your decision!
Thanks Chickengirl for the advice what to wear, I shall have to find some cheap things to wear in hospital as well as a front button dressing gown. Your advice about painkillers is helpful, I don’t want to overdo things unless really distressful.
Best of luck
love
HamletX