Help, Failed implant recon / DIEP query re quality of tummy skin / experiences at Norfolk & Norwich

[Seagulls]

Vent away - I also feel Christmas has been hijacked - not by a mastectomy to be true, but my mother’s care package at home is failing so I have to collect her on Friday and take her to a care home down the road from me and get her a place there. That’s my priority for today.

there’s no time like the present though. 

Seagulls

[CTopaz]

Hi all, 

Bit of a saga!  I was diagnosed in March with IVC grade 2, ER+ (8/8), and intermediate DCIS in my left breast.  Lymph nodes thankfully clear but after WLE, no clear margins so decided on single mastectomy. I should be grateful I didn't need chemo or radio therapy (just Tamoxifen at the moment). I am 56 and perimenopausal and as I had a coil in for 5 yrs which delayed menopause)

Plastics rejected me for a DIEP - apparently my BMI is too large and I need to lose weight.  So I had a silicone implant but due to very thin skin, I got an infection and fat necrosis so the surgeon then tried an expander implant.  This too has caused problems too as the port twisted but finally fully inflated 3 weeks ago.  After that, the skin was thinning again on the scar and the surgeon is worried.  She suggested perservering but was concerned a new silicone implant would fail as well,  so have made decision to go flat on the left side which the surgeon and I reckon best decision.  The surgeon is doing this next week.  Completely ruined Christmas plans but better flat than not!  So staying at home with a Pico (possibly a drain) and am a bit fed up! 🙂 .  I am concerned the skin will break down again, even without any implant!  

Sorry to vent!  I should post this to the "Awake" forum on the Macmillan site, rather than highjacking this thread but seemed best place to post.

[Seagulls]

NB I can moan for England as you see!

[Seagulls]

That’s very kind of you to say. I got over the itch to the new breast but now have a three or four inch wide itchy strip on my abdomen which at first I thought was due to becoming allergic to the waist band of my pants but it’s only on the front of my body above where I had my diep operation so I don’t know what is causing it. I’m taking fexohedrine tablets prescribed by my GP and avoiding putting anything on it apart from plain water but it’s showing no signs so far of going. I do still have a plaster on part of the scar but it’s tiny now so I don’t think it’s that but I shall change it today for a different kind which maybe has a different adhesive as the itch is driving me mad. I have other stresses - my 95 3/4 year old mother has been in Frimley Hospital for weeks now after having a fall, a suspected heart attack and pneumonia and a broken hip.

She now has recovered from all these with a super bionic hip joint. But me and my husband have colds, his seems to have progressed but he is staying up all night now watching Netflix series all the time while I keep waking up and am getting very fed up. We came back home to stop mum catching our colds but that just means social workers, nurses and physios ring me on my mobile constantly trying to arrange for mum to go home. the book I read by the two doctors said you should not have a reconstruction if you have caring duties but I thought why shouldn’t I? and then mum fell on the floor in her living room and we were told she could well die in the next four days. She didn’t. tomorrow I go to a 10-4 pm recovery in action at The Cancer Centre in Guy’s London and if this helps me recover I will be very surprised. I have read diep surgery takes from 3 - 6 months to recover but I have had no time to recover because since mum collapsed I have been going back and forth to Frimley Park where no one seems to believe me when I say I had surgery on 8 September. Actually that seems like years ago now but my wound although almost healed at last is still scabby and has a stitch or two hanging out of it which you are told not to cut off even though it’s now very hard and brittle and shows no sign of being absorbed as it’s dried up outside the scar…

[helenann]

Hi Seagulls, I meant to say that your photos are not hideous (or disgusting as you said in your message to me) at all. They show the trauma, pain and anguish that we have to go through while battling this horrible disease and try to get some normality back into our lives. 

We are warrior queen's👸, and we will get through this and learn to live with whatever outcome we are dealt. We're strong, determined woman - so don't ever forget that.

Sending much love,

Helen

💕💕💕

[helenann]

Hi. Don't worry, they were sent to me in a private message so only I can see them.

💕💕💕

[Seagulls]

I don’t know how I can see the hideous images I uploaded as they seem to have disappeared from view. Luckily no one will be able to recognise me from them! Except my surgical team that is. 

Seagulls

[Seagulls]

Apologies for size of my photo it shows my result after allergies etc I don’t think it’s any better than yours but you may think differently! I am 67 so quite close in age to you.

Regards Seagulls

[helenann]

Hi. I've sent you a photo of how I've been left.

I know I'll never look like I did before but I did expect more symmetry, maybe because the consultants said they would be doing so much for me in the beginning. I'm 66 so not wanting to go top less or flaunt myself - I just want to look and feel comfortable. I hate it when I catch sight of myself in the mirror each morning.

I'm really hoping this new plastic surgeon is different from the consultants I've seen so far who all seem to think I should just get on with things and accept how I am. 🤦‍

Xxx

[Seagulls]

the other thing I bear in mind is that nowadays there seems to be more emphasis than ever on big bosoms and I think it’s madness. I don’t want to be a topless model but I do like symmetry. My current state is of one bigger bosom that the other, it has hard areas, it has no nipple and it doesn’t look like the other natural one. The cancer docs have their eye on that one too though so it may have a limited life…

However I certainly did not want a hard heavy silicon implant or a knitted knocker or a silicon prosthesis from surgical applicances as I would have got from my local hospital in South East England.

Having said this, my recovery from  surgery has not been straightforward. I had allergies which I must have had years ago as when my notes eventually arrived from Barts surgery in 2003 it said I was allergic to superglue, dressings, and tape and so it proved in 2022.

Because I had forgotten all about this, my breast and tummy areas arms thighs and stomach turned a beetroot colour about ten days after surgery, and I had itching everywhere.  I thought it was impetigo and had to send photos to my GP as no one was allowed to visit there. I remember having a short discussion about what it might be, including shingles, but an allergic reaction wasn’t mentioned.

So I got treated for an allergy with a cream I was also allergic to and I still look like I have a skin disease now. My abdomen has a scar from hip to hip and I have a gaping wound due to the shopping trolley incident. This happened when my lower abdomen went at speed into a shopping trolley my husband hadn’t pushed forward on a moving conveyor belt. So the wound’s  been weeping away for about five weeks now.

So although all these complications take my mind off the fact I have a lymph node with cancer in it as well as a long way to recover my feminine beauty, I am someone who does not rely on her bosoms for sex appeal.

Good thing too. I am not a bimbo super model and I don’t believe my life would be perfect if I looked like a bra model. So I can’t really help you decide what to do. I am glad I didn’t feel I had a mastectomy as I immediately had something that looked breast shape when I woke up. The later complications made me wonder if I’d made the right decision but you can’t turn the clock back! It was worth a try…

[Seagulls]

I had a diep immediate reconstruction but it didn’t come out like the photos I saw beforehand and although it looks good in a bra the allergies I had afterwards plus swelling have rather dampened my enthusiasm. Not entirely as I do now have a cleavage for the first time ever. What I would say is that I didn’t have a hardened implant, just a misshapen breast after the surgeon cut off about a quarter of it and the nipple moved sideways.

The new reconstruction seems to also have a nipple off centre… so that problem hasn’t been remedied. I do have photos but would rather send them to you in an email than put them on here unless I can do that privately. I was 67 when I had my reconstruction so not all hospitals discriminate on age grounds. I thought my plastic surgeon was keen to practice as she only started doing dieps in 2021 but I might be wrong there. 

[helenann]

Hi. I was like you in the beginning - kept myself being very positive about the whole thing. I never asked 'why me?' etc and just set my mind to fighting this horrible disease. At first the consultants told me I would have an expander implant, then reduction surgery on my 'good' side and then a new nipple which could be tattooed.  So, I was really optimistic about my prognosis and how my appearance would be following treatment.

However, it didn't play out like this - the implant could never be expanded to anywhere near the size I was - the reduction surgery hardly made any difference, and the new nipple is a 'no go' because of the discrepancy in the size of my breasts.

As you say, I now feel I am back to square one - having to see if anything can be done to improve the appearance of my breasts. I know the 'professionals' I have seen so far don't approve of me having any more surgery and it was with great reluctance that they have referred me to a plastic surgeon. 

I feel if I had been given options in the beginning on the types of reconstruction available I would have been able to research which would be best for me and I know I wouldn't have chosen an expander implant for the reasons I've stated here. I would have probably gone for a DIEP reconstruction (I have enough fat🤣) and the rest would have been history and I'd be over all operations, and I expect have a better outcome (Anything would be better than how I've been left at the moment🙄). 

Anyway, enough moaning from me - I'll just have to see what this new plastic surgeon has to say. This is my last throw of the dice - if nothing comes from this I will just have to try my best to accept the way I look and get on with things - no matter hard I will find it.

💙💙💙

[DestinyIsAll]

Hi Helen,

Thanks for your reply, but I’m also sorry to read you’re having a similar struggle. I think we, and lots of other women illustrate just how much there can be to deal with with a BC ‘journey’, even when you get active treatment out of the way you can’t move on.

Once I started the process of trying to process the diagnosis, I actually entered my mastectomy and initial recon op with quite a positive and accepting approach, even in Covid and doing it all without any support. I’m quite a strong person but over time I’ve just been worn down by it, also to the point of tears in the consultant’s office so I can empathise with how you feel. 
I now have an appointment with a new consultant, who I understand to have a different approach and may offer me other options, though my appointment is weeks away and she did stress how long the waiting lists are. She did an online presentation of recon techniques and Q&A session yesterday with me and a few others about to undergo surgery. It mainly focused on implants and DIEP tummy surgery so I don’t know how much was relevant to me for my next step, I’ve obviously already had failed implants and might not be a candidate for DIEP, but it was a good resource and my previous consultant didn’t do anything like that. The other patients were all at the start of treatment and it did remind me that I’m now back at square one, after already having two failed reconstructions. I now have to get myself from feeling utterly fed up and miserable about that and being pushed to the point of just accepting going flat as the easiest option, to thinking more positively about starting again and the possibility of yet another complicated op with a long recovery. I won’t know any more about what the next step till I see her in person. 
Let me know how you get on on the 2nd, I hope it goes well and you come away with options and feeling more positive. 

[helenann]

Hi. I'm going through something similar. I was diagnosed with IDC late 2018 and as it was multi focal I had to have a right sided mastectomy. At the time I wasn't given any choices on which reconstruction and was told an expander implant was what was best for me. I was in such a state of shock at the diagnosis that I accepted everything that I was told - basically I put my full trust in the consultants.

Fast forward to today and to try and summarise what has happened since 2018 - the expander implant was horrible. It is like big blob on my chest, sits really high up and is uncomfortable and looks horrible and it is considerably smaller than my real left breast. I had reduction surgery on my left breast in March 2020, which didn't make hardly any difference and because covid hit in I couldn't have any more appointments.

Once appointments were starting up again last year, I contacted the hospital to get to see the consultant as I wasn't happy with the implant or the reduction - as there was still a VAST discrepancy in size, I couldn't have nipple reconstruction as the surgeon said he wouldn't know where to place it as the breast were SO uneven.

When I seen the surgeon in November last year he was very dismissive of me and more or less said there was nothing he could do for me and maybe I should go flat. This really upset me as this was never an option as far as I was concerned and I ended up in tears. His solution was to say I needed counselling. I told him that the expander implant was never going to work, and I should have been offered an informed choice of which reconstruction to have. He got very defensive when I said this. I really think I was given an expander implant at the time because it was the cheapest, quickest and easiest option. I also think that due to my age they weren't too bothered about my appearance and maybe thought I'd be the same (I'm 66 years old now, I was just 62 when I was diagnosed). I had quite large breast's a D+ cup and I know now expander implants are better for smaller breasted women, which I wasn't advised about at the time.

To cut a long a short I was referred to a psychologist who only seen me once and discharged me as she said there was absolutely nothing wrong with me mentally and it was my physical appearance that was the problem. I have now been referred to a plastic surgeon to discuss my options. I have an appointment for 2nd November. I don't know what to expect as I have lost faith in these consultants - but at least this is someone new and it's at a different hospital - so hopefully I won't be dismissed as a nut job. 

Keep us updated with your progress.

Love

Helen

[Chiara_BCN]

Hi DestinyIsAll 

I'm sorry you haven't received a response yet. If you would like to talk things through with someone in the mean time, our friendly nurses are available to lend a listening ear on our confidential Helpline.

You can reach them on freephone 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Alternatively, you can get in touch with our Nurses in the Ask Our Nurses area of the Forum and they can respond to you online. We're always here to support you.

Best wishes,

Chiara

[DestinyIsAll]

Sorry, apologies for length of post. A bit of a saga with my reconstruction, I will try to summarise.😊

June ‘20, I was diagnosed with IDC, had right side full mastectomy and immediate recon (NHS).
I definitely wanted reconstruction, preferred immediate recon, so looked at options with plastics consultant. DIEP was my preference (and he didn’t offer anything else) but after assessing my surgeon advised my tummy tissue wasn’t good enough (very stretched tummy due to full term twins and later large weight loss).
Disappointing but I’m a pragmatic person so accepted this. There may have been an element of them wanting a simpler op due to Covid but this wasn’t expressed to me at the time, has been mooted since.

Sept ‘20. Had surgery with immediate implant recon with implant. No mesh.
I had severe seroma following, multiple draining for this over many months. Once seroma had receded the implant had displaced and essentially the reconstruction failed.
Jan ‘22. Second surgery to replace implant and insert mesh sling.
No seroma, more painful after with the mesh insertion but healed well. I think I had realistic expectations of my aesthetic outcome, i.e. definitely not expecting perfection, but the breast mound sat very high so quite poor symmetry and 6 months later still lots of pain in the mesh area. Check with consultant at that 6 month point, he was happy with result and suggested it was a good aesthetic result, dismissed my query over how high it sat and he felt I had an acceptable level of discomfort but he hoped that might still improve. I went away ready to accept my new physical appearance and try to be positive and move on with life.
Aug’ 22 Just a month later the reconstruction developed severe inflammation and infection and has remained inflamed. Consultant wasn’t sure what was going on but said initially if it doesn’t settle it will have to come out, he couldn’t put a new implant in then but possibly could at a later stage. Or go flat as another option. No other forms of flap surgery suggested.
I’ve since had multiple courses of antibiotics including being admitted for IV last week and now still on an oral course.
Unfortunately the inflammation has led to a severe capsular contracture. The infection appears to be receding now but with the contracture it’s extremely painful and generally very uncomfortable which is permanent until removal.
My consultant wasn’t there when I was reviewed prior to discharge last week so saw another consultant from the team.
She said the implant had to come out, asked why I hadn’t had DIEP and (quickly) assessed my tummy, saying that in her opinion it would be fine for DIEP. She asked to see me in her clinic in a few weeks where she would discuss options.

Obviously I need to wait to hear what she says and have all the information and options laid out. I don’t feel so keen on other forms of flap surgery.
I do like my original surgeon, I know other people are happy with him, but I’m very keen to know if DIEP is a realistic option for me and could give me a good outcome so I’m happy to hear another surgeons opinion.

I’m just a bit wary now, after 2 failed ops.

If anyone can relate, has been through similar or has any advice I would welcome thoughts, and also any personal experiences with consultants at N&N (maybe via dm?)

Thank you 😊