Reconstruction - don't know what to do!!

[TibetOne]

Hello 🙂

Thank you so much for your replies, it means a lot.

I've been mulling options over and would welcome your thoughts.

I know I need surgery asap to see what's going on, have scared myself senseless with reading posts about what else is lurking when they do the pathology reports.

It took me  along time to aggree to surgeons rec of double mx but felt it was the right decision as high grade DCIS, large area 6 x 4 cm, LCIS near by and family history and my age 49.

But now although this is what I'd still like wondering if I should take a different route to MX.

As 2 surgeons have expressed concern re double MX and complications wonder what anyones thoughts are on:

Therapeutic mammoplasty to both which would remove the DCIS and LCIS.

Then see what's in pathology and if all ok move to double MX.

As they all seen obsessed with the size and differing size of my boobs wonder if staged reduction would be better?

Reasoning is the first surgeon refused to do double MX saying too aggressive for DCIS, he wanted to do reduction and radiotherapy but said if margins weren't clear the first op would make mx much easier operation.

Sorry for ramblings but fed up and confused xx

[lankylass]

When I had mastectomy l side done in Jan for high grade dcis diagnosed Nov 14, query invasive but unsure, the surgeon decided half an hour before theatre, to ditch plan for permanent implant. For surgical reasons at the time, about healing as I am an ex smoker.
I had a temp expander put in. Was I annoyed!
Am I glad I trusted his opinion even though I was pretty hacked off at the time.
When the path lab report came back after mastectomy it confirmed that it was invasive, very aggressive and a sentinel node was affected. I am in the middle of a fairly lengthy chemo regime and herceptin jabs and won't be having my lovely new boob till all this is over.
It is a horrible year but just getting on with it a day at a time and having to adjust to lots of changes and disappointments, but it won't last forever, just tough on me cos I am normally a very impatient person.
I am sorry for sounding like the bad fairy at the feast, but please trust your surgeon- ask for his rationale- or get another surgeon second opinion which any doctor worth their salt will agree to.
You will get what you want eventually, but it may take longer than you anticipated. And sorry for putting the wind up you, hoping that when you do have surgery there will be nothing found that would require additional treatment.
Big hugs to you at this awful time- but please go and talk to your surgeon armed with loads of questions and hopefully you will get a satisfactory explanation and outcome.

[Sodastream]

Tibetone it sounds like you've every right to feel frustrated. The only thing I can think he's worried about is if you haven't yet had chemo then doing the least amount of surgery at this point so that you can start chemo as soon as possible.
I want to give you my honest account of having a single mx. I too was gutted when my surgeon wouldn't do a double mx (he didn't say ever just at that time as I had very aggressive cancer that needed to be operated on and quickly and he didn't want to complicate things at the time). I too have 34dd droopy boobs or should I now say boob that is down to my waist without a bra. I've been living as a uniboober now for 8 months and can honestly say I don't mind as I know it's not forever and it doesn't stop me living a normal life. In fact I am on holiday now and can laugh at the funny things that happen like yesterday trialling my swimming knitted knocker for the first time. I'd filled it with 1 1/2 bath scrunchies and looked pretty symmetrical until I lay on the sunbed and my real breast disappeared under my armpit leaving a very pert foob. A quick visit to the toilets to lose some stuffing and readjust and I was fine.
I am glad I have this time to live as a uniboober as I don't feel rushed into making decisions about reconstruction. I'm still not sure whether to have LD reconstruction or elective mx to healthy side as I think I'd be happy with either so will trust my surgeon as to what he thinks is best.
Forgot to say I found the surgery for single mx a doddle and no pain whatsoever however my friend who had double and immediate reconstruction really struggled and took much longer to recover.
My advice would be to do whatever you can to get the cancer out first and then think of this process as stages and try to deal with it bit by bit. Let us know how you get on. X

[rosie14]

Tibet one you really need to commence treatment. Are you having chemo and rads? Can you go to your GP and explain the nightmare you have just had and see if they can get you to another surgeon with some urgency) good luck let us know what happens! X

[jillybee]

How can there be more complications having a double Mx???your surgeon may have asked you what you are having done,so he could find out your understanding.However,does appear to be badly managed.Have you gone private ?I have had 2 amazing surgeons,on the NHS....one based in Essex,he was superb,and a female surgeon at my local hospital...she has been my rock,as have had to undergo lots of surgery with her.I have been lucky.I think I am adding 2+2 making 4 on the surgeon in the programme ...😜
I,too had high grade DCIS,15cmx9cm.All I can say is it will work out.....just gentle hugs,and reading your post I continue to realise how lucky I have been......all our stories are different,but somehow,we are all the same......does that make sense.....????xxxx

[TibetOne]

Hi

I really feel for all us going through this decision making.

Re reconstruction, I was advised best option was tissue expanders then inplants with option of DIEP at later stage. Feel this is still a good choice for people who are unsure.

I've got high grade DCIS, large area 6 x 5 cm, diagnosed in Nov 14 and still not had treatment.

After much thought booked in for double MX and tissue expanders next week.

BUT bombshell at pre op meeting this week.

Didn't start well, surgeon asked me to remind him what op he was doing.

Then decided half way through the exam to say actually I won't do double mx now only single and see how you get on.

Shocked was the understatement as he has recommended double MX from the outset due to recurrence rates, droopy boobs !! and different size boobs, it just gets more flattering.

Nightmare afternoon followed though had support of fab breast care nurse who was appalled.

Nothing has changed, have even managed to lose 7kgs.

Eventually after much discussion between him and BCNurse he said he would reluctantly do double MX but if I understood complications.

So now I don;t feel I can trust a surgeon who has so little disregard for his patients and changes his mind at whim.

Researched surgeons so carefully, he is world renowned, works in London and has been in the press recently for treating a high profile patient who had a world renowned blog and tv drama based on her life.

BUT feel I can not trust a person who does this.

Now have cancelled the operation and am back to square one.

Love to you all xx

[Matty2]

I know, I know - should be clear of all this now as no further treatment required, but it's really getting me down 

So Thursday is a little step

Thanks Sarah had forgotten all about them

 Beryl xx

[JETS]

Hi Beryl 😞 - but little steps....{{{{{{ hugs}}}}}}

[riversidedawn]

I had manuka honey on mine, worked really well when nurse did it. Surgeon didn't remove packaging so put the plastic against my wound, needless to say it went manky and implant infected and removed. But when properly applied honey is great!!!

[lankylass]

Oh no! I hope you do see an improvement with the antiobiotics. Just seems to drag on and on, fingers crossed.

[Matty2]

Up date

Another sore patch found. Now have silver dressing on it as well as massive plaster type ones.I have been given some antibiotics with a great long list of possible side effects. They have also taken a swab and back on Thursday for results, dressing change and to see if antibiotics have had an effect

B

[Matty2]

Thanks Sarah x

[JETS]

Hi beryl x God u must b fed up xxx you will get better and actually this is very early days as u had ur op about same time as me ... Just one month ago! deep breaths xxx lots love Sarah

[Matty2]

I suggested Manuka honey as well - was told only as a last resort!

Will go with what they say at the moment - don't really know any better - yet!!

B

[lankylass]

Oh no!! Mine is still a bit manky in places and a dressing was put on, but doc said it was looking much better. I suggested manuka honey which they agreed was brill- but they don't do it. I did suggest I nip round to the local vet's as my cat had them after surgery. Didn't own up that I'd been slathering it with Holland and Barrett's best! Might be worth having a go with it Matty, I got a stock of primapore dressings and took matters into my own hands. Desperate to get mine healed, I start chemo on the 24th.

[Matty2]

Bad news - another patch broken out- new boob is now covered in more dressing than it ever was after the op.

Back to hospital on Monday

They do say that there is no sign of infection though

Bit peed by it all!

[lankylass]

That's good news! Mine still has a couple of dodgy areas so hoping it heals in the next couple of weeks before I start chemo Fec-T plus herceptin. Expander implant part inflated , hope it will be slowly filled alongside treatment so can have my final implant end June/early July

[Matty2]

Another hospital visit this afternoon.

The place where it wasn't healing seem to be much better, but it is so covered in dressing I haven't actually seen it

I have found I can do the exercises now without that awful pulling pain I was having so fingers crossed I will be dressing free later today

B

[Matty2]

Good demi - lots of positive thoughts there

Keep it up

B

[Demi49]

Feeling better after a pedicure, which I had since I mustn't have nail varnished fingernails on Thursday.  Talking about it has made me much clearer in my head that I do not want an implant.  It is too late to change to a double reduction on Thursday, but lets see how necessary it is anyway after all the treatment!  The real nub of it is that there is no solution that is going to be the perfect solution, its just making sure I get the best one for me.  That's going to be about the fewest number of ops and least amount of fiddling around.  I'm ringing the nurse later, and this is really all about if they needed to take the whole breast, but if they are talking about a quarter of it now, that would be a massive increase and that is not likely.  I can't stop thinking what a luxury it is to be able to have all these options to consider.  My life, very luckily, is not in danger.  I have a lovely family who are all desperate to help me, and I have been diagnosed in 2015 when treatment is very good.  

[Matty2]

Hi again

I huffed and puffed about an implant and then decided to have one at same time as mastex. I am surprised, now the swelling has gone down, how much smaller it is. I have been told I can have the other side made to match but it is best to wait for the side that has been done has settled down so a good match can be made.

Couldn't keep my nipple as one of the Beasts was right there, and I'm well beyond breast feeding now. Don't really miss my nipple but then it's where I found the lump so as it's not there means Beast isn't there!

I really think you need to talk to someone about your decision, It is too late  to cahnge your mind only when you are in the Op.

Talk to BCN, consultant, GP, Macmillan, BCC but do talk to someone please

beryl

[riversidedawn]

I know what you mean about cutting up other bits of the body. I cant face that. I had masectomy and immediate recon with implant in sept but if got infected and removed in december so I'm trying to.decide whats best next. Tbe implant was fine I was happy with it and was going to have tbe otber side uplifted. I'm 47, got 2 kids so dont need my nipples either!! I'm m only a b cup, your reduction sounds like a good compromise. You will probably feel better about it later and chhosr to.havd the reduction on second side , its a smaller op.than the lump removal.

Keep talking, even if its just to us x

[Demi49]

I'm having 3 lumps in left breast removed, and all my lymph nodes taken out too on that side.  That side of things weirdly doesn't worry me, and I don't feel worried about having a breast covered in scars - strange eh?  Masectomy and immediate reconstruction with implant was suggested in case breast was too reduced to match the other side, but I don't think I could bear any sensory difference in weight or movement, so they said after all the treatment I could have the other breast have an implant too, which to me makes it twice as bad!!!  I asked for a reduction which they say is doable - I have an E cup and they reckon they will be taking about a quarter of my breast away so I will still have shape, but it will be smaller than the other side until/if I have that side reduced.  If I was going in on Thursday to have that op having got through all the cancer treatment, I know I wouldn't be able to make myself do it, so AAAAAAGH!!!  They are being all cheery about having perky little boobs after it is all done and all I can think is, I don't want any of this so stop being cheerful and bossy.  The nurse is saying that long term two ops will give the best outcome.  There is also no way I'm brave enough to have them cutting any other bits of my body up either.  I HATE THIS.  I didn't sleep much last night worrying about something going on with my son at college, so I'm not good today.

[riversidedawn]

Demi are you having your lump removed at the same time or is this just reconstruction? You need to be happy, call your nurse or surgeon or call the helpline to talk it through, better delay than make the wrong decision. Its very emotional timeor please talk to someone x

[Demi49]

I've had a cry today too.  Surgery on Thursday, and don't think I have made the right decision as regards reconstruction for me.  The options I was offered were all about implants and the idea makes me cry, so I asked for a reduction on both sides at the same time, which they were prepared to do but advised waiting until after all treatment to have the healthy side done.  I accepted that advice, but I don't think I will ever be going back for an operation unless it was for more cancer, and I really, really wish I had asked for it all to be done in one go and then lived with the potential lopsidedness.  I used to have a nightmare when I was breastfeeding that something would happen to my nipples and they would fall off (!!!!) and now they actually are going to be cut off and reattached and the idea of THAT makes me want to cry too.   I mean who needs nipples when you are 49 and you've done all your breast feeding and not feeling that you are going to be getting anything out on a topless beach ever again anyway.  I honestly feel at the moment that I would rather be flat on both sides when I wake up on Thursday so that I don't have to have any more surgery.  Everyone keeps telling me that I will change my mind, but the idea of waking up and having a lump of something on my chest makes me feel sick, so how can I be so wrong?  It feels as if there are no good solutions available for me now.  Perhaps that is just part of having breast cancer, and I had better get used to it!

[Kentstar]

Hi Beryl, don't know if this helps but I had a stubborn area that wouldn't heal, I was back and forth getting it checked etc. I saw my plastic surgeon 6 weeks post op and he pulled away the scab over the "hole" and there was an internal stitch that was stopping it healing. He used tweezers and got it out, it then took a couple of weeks to fully heal over. None of the nurses had actually noticed this was the problem. X Stella

[Matty2]

These ops don't seem to go smoothly. I have been back to hospital again today as one wound that was aggravated by the allergy is just not healing and then I found a hole i  it.

They have said it's not the implant, but the wound is breaking down!

A dressing has been put on, keep it dry but it will leak! Back to hospital on Friday to see how it's going.

3/4 hour journey each way each time

Not feeling too bright about it all at the moment

beryl

[rosie14]

Hi Riversidedawn I had rads 3 months after op and it did burn my skin it was like sun burn. I hope the pocket has stayed open as I couldn't bear having another tissue expander put in!!!😁😫

[lankylass]

Have showered the scar to 'debride'? 'debrade'? LOL - I think they call it and put on a sterile dressing smothered in 12+manuka honey. Prob best not to tell the doc, but it is looking a lot healthier. Well it worked for my cat when he had surgery after a jaw abcess!!

[jillybee]

I remember ringing BCN and she said,"it is never just a reconstruction"
Don't beat your self up about it......I had infections,narcotic areas,and leaky boobs for ages....when asking my consultant,she said things just happen.I did everything by the book as well.Gentle hugs.

[lankylass]

I've developed two small areas of necrosis on my incision two weeks after surgery. What the heck went wrong? Apart from having the dressing taken off a week after, and told I couldn't have a shower till the drains were out 10 days after. So I have had a dry scar gone bad. Thought incisions were supposed to heal better if they were covered up and moist?

[riversidedawn]

It's not easy is it Rosie? Sorry you've had infections too. How long after the op did you have rads and how did it affect the skin? It sounds promising that the pocket should be ok. Fingers crossed for you x

[rosie14]

Good morning ladies it seems we are all facing these decisions about our bodies and then having to be led by the specialist! I had DBMX in July and had tissue expanders inserted at the time of surgery. I developed increasing problems with the left one which delayed the inflations and consequently rads as they wouldn't start until,the inflations were finished. I had about 350mls in each side. 2 weeks ago I developed yet another infection and the surgeon at that point said he would have to remove the expander and wait for it to heal. I think he is hoping the pocket that had been created by tissue expander will be enough to put in implant. I have to have the stitches out on Wednesday and I am hoping he may be able to give me an approx time before final reconstruction. It is not easy for any of us facing this journey it does not go according to plan and all we can do is take a day at a time and hopefully one day in the future we will feel whole again! Hugs to all of you!x

[drdspg]

That's a relief. Glad to hear that it was something they could sort out for you.

[lankylass]

Oh that's good it wasn't more serious, hope u continue to heal well. Have had my drains out today and dressings off 10 days post surgery, keeping fingers crossed all heals ok.

[Matty2]

Hi there

just returned from hospital. Seems I'm having an allergic reaction to micropore which i was told to put on scar to help its look.

All has been cleaned and treated and dressed but have to rely on bra to keep dressings in place as can't have micropore

B

[Matty2]

Hi

Thanks for this advice.

Managed to get an appointment at GP, then phoned BCN who said come into the hospital to see consultant, so am going there this afternoon and have cancelled GP appointment

Thanks

B

[drdspg]

Please phone the ward and tell them. Take your temperature. I presume that " yuk" is a greeny-yellow dicharge ? As everyone said, keep it clean and by all means ring BCN tomorrow but RING THE WARD today. This is advice from me as a patient and also what my sister ( who is a GP) said to me 2 days ago when I was feeling off colour. I'm also a doctor and think her advice was spot on but not easy to take for oneself or even think clearly.
By the way, did I mention ringing the ward? At the very least, they can set your mind at ready.

[riversidedawn]

Absolutely just keep it clean. My hospital gave me liars of steri packs with gloves, cleaning solution, swabs and dressings do I could change it myself. But get to the hospital ASAP so they can check it properly x

[lankylass]

Just keep everything clean and covered, best you can. Don't panic!
One of my drain bottles lost vacuum yesterday, OMG! District nurse emergency on ansaphone, I sat down and had a cuppa, rang the hospital ward I had been on. Simple instructions given on how to change over to spare bottle, job done. When duty DN rang she said that she hadn't a clue how to change a de-vacuumed drain- so I told her! We laughed. Good old common sense Beryl and you seem to have lots of it!

[Matty2]

Morning

Will have to contact BCN tomorrow - why does it always happen on Sundays - wound where it was sore is weepy and yuk this morning with stains on bra when I started to change dressing. Cleaned it up with wipes, clean micropore. Will phone tomorrow

Any hints?

Beryl

[riversidedawn]

Good for you Matty, speak to BCN if you have quiries. My recon felt strange at first, lots of prickling and itchy. Just get checked out when you think you need to. Everyone's different. x

[Matty2]

Hi there

feeling more comfortable with body now.

With some of the pain and itchiness  I had yesterday I thought I would have to contact BCN - seems to have gone today. OH says it's just the healing process

Taking it very easy though - up days and down days but last wednesday was the worst - over it now and trying to do what counsellor said and spend quiet time away from everything and 'list' positives. Strangely so simple but feeling ok about it.

Hope all those bent double are feeling more upright now

I have plenty of spare stomach skin (plost a lot of weight last year thank goodness), but could't face such a major op.

If I hadn't lost weight I probably would not have found the 'hardening' beast which has put me on here.

[riversidedawn]

That sounds great, well done you! My friend had complications 24 hours in as it didn't take so ended up with ld flap as well !!! Yours sounds good so far x

[drdspg]

Hi, I'm not walking completly upright but not so bent that I need a stick. I do know they had to stitch me up pretty tight as there was limited tummy to get so they had to make the most of every inch!!
To my surprise, I was never bandaged ( unlike post mastectomy). There is tape and glue. The stitches are internal. Looking downwards, it looks a bit weird but then when I looked in a mirror, I can see how it might look later in the year when wounds have healed and tissue swelling has gone down. I was very much preparing my self for only a limited outcome as I have had quite a bit of surgery and didn't feel I could really expect them to achieve too much. I am actually cautiously rather pleased. The surgeons said not to worry about how it looks immediately post op. I have a lot of faith In them as they are an excellent team. I am now glad that I had to wait for the surgery as it gave me time to prepare myself. I also need to keep aware that there can be complications as days and weeks go by so I'm not too knocked back if something goes wrong. Fingers crossed, going well so far. My family have been very supportive.

[riversidedawn]

Drdsgp are you up and about. My friend had it done and was bent double on a walking stick for a few weeks. Have you seen the results or are you under wrap still? Can't wait to get mine done but is ages away!

[drdspg]

By the way , I do agree about the anti coagulant injections. Two of the nurses said that they were aware how much patients going them to burn but when they had to have Clexane themselves they understood!!

[drdspg]

Hi, have had bilateral DIEP just over a week ago. Although I found the wait extremely frustrating, I'm so glad that I did. I think I coped much better. Early days but going well and feels like a good decision. By the way, also had little tummy fat but the surgeons still managed.

[lankylass]

Just got the dressing off yesterday so a line of steristrips across where my nipple used to be. And the huge transparent waterproof dressings over the drain sites which will come off on Monday. All lumps and bumps especially the expander port under the skin bulging out near the collar bone (surgeon said he wasn't able to put it under my arm!) which looks like he accidentally left a piece of lego in! It'll all be ok in the end.....

Tbh the worst bit of the whole experience was the anticoagulant injections which don't 'alf sting! I am such a wuss....