I am getting in a right old stress about what to do about having reconstruction (or not). I had a mastectomy on my right side in August 2014 with full node clearance which then caused severe nerve pain. I then had chemo and rads.
I have seen surgeon 2X and been put on waiting list for reconstruction (as that is what I thought was the right thing to do) but now getting scared as it comes closer!
Because of having rads I am unable to have an implant and being slim build have been told my options are DIEP (fat and skin from tummy) or PAP (fat and skin from inner thigh).
I am told that the PAP operation is a very new operation and my surgeon has only carried out about 4 of these which of course makes me very nervous. Also, I like my tummy as it is and not sure I want it all scarred even though I know that the scar will heal and the surgeon has carried out 100’s.
So if any ladies have had the reconstruction (PAP) using fat and skin from their inner thigh or indeed the DIEP would you please tell me your honest thoughts and experiences?
I am also not at all sure about going back into hospital again as the whole thing was very traumatic at the time. I also had a major scare in February which although turned out to be fine caused me to develop stress and anxiety for which I had help with.
I am pain free on that side and am only a B cup anyway so the silicone prosthetic seems to work fine. I have even found nice bikinis that I am confident in. The only thing is I have to be careful with what sort of neckline I wear and of course when I take my clothes off it’s a reminder but It is now not as upsetting as it was and I wonder what I should do if anything.
Also, any ladies who have decided NOT to reconstruct I would love to hear from as well.
I am 48 and like to keep fit and active and also slightly hospital/needle phobic
I would appreciate your thoughts on this and thanks in advance!
I am 45. I had a right side DIEP last Tuesday. I had my mastectomy April 2014, followed by chemo and 5 weeks of radiotherapy.
I have always been quite slim size 10 but was told to put weight on last year at my consultation. I was so excited to get my op date just 4 weeks before surgery. I had been looking forward to it so much. The waiting list in my area is now 18 months. I have had a year to prepare myself and also to heal. I was still quite painful after radio and it was all lumpy too. My Boobs pre cancer were 34 b , I hate my prosthesis I have never worn the one from the hospital although realistic it was far too heavy, I bought one myself it is like a bean bag. I have hated not being able to wear nice underwear and I like to wear bikinis.
I had my surgery at Whisron hospital. I was talked through exactly what would happen step by step from my admittance by both my surgeon and the specialist reconstruction nurses they have there. This really helped me. I have hot flushes so the worst part for me was being kept hot immediately after the op. The nurses wiped my forehead and face down and I slept, I coped. Things improved after that.
Pain wise I expected it to be horrendous. It wasn’t. I would say it was more ‘sore with a sting’ the first day. They had a local anaesthetic attached to my abdomen for three days. I never used any of the morphine provided should I need it. I was up and about the next day. I was discharged on Friday. I am doing my physio religiously, it has really helped. I feel great, I cannot wait to get back to work.
My boob… I love love love it (her)?? ? Feels and looks so real, so soft to touch. I can’t stop looking! My stomach has always been flat, I didn’t actually put that much weight on, most of what I did put on seemed to go to my hips and thighs. My stomach still looks fab, my stitches are immediately above my pubic area. My other boob will need a slight uplift. Surgeon said when I’m all done I should be 36 or 38C.
I can honestly say it has been the best decision I have ever made. I feel like I can now get back to being ‘me’. I think the fact that I was looking forward to it so much has helped my recovery.
Thanks so much for all this detail…I’m on this brink and being advised to have MX and immediate DIEP and feel very uncertain. I’m older than you two, 63, but want to look good and feel ‘whole’, but anxious about the recovery. So appreciate you posting this, Caroline
Only just found this forum - clearly i am NOT the only one stressing about my reconstruction!!
had right mx last August - immediate expander that failed within 2 weeks - huge infection - had to have it removed . Was gutted . NOW told by Bs & PS they dont think i can take another expander as skin too thin.
Cant have DIEP so looking into SGAP ( buttock ) or TUG (thigh ) non one mentioned the PAP to me ??
MY concern is that i will end up with non symetrical thighs ( one fat one thinner )/ buttocks which is going to be noticeable in my running lycra tights ( which i seem to live in !!)
Has anyone on here had a uni lateral reconstruction using SGAP or TUG procedure.?
I can find hundreds of DIEP flap photos but most of the sgap or tug are BI lateral reconstructions so the thighs and buttocks are both evened out as both sides have been used !!
Anyone about to have it done even -? there are not many surgeons in the uk who seem to do the SGAP !!!
thanks to anyone reading this as i imagine if youa re on here you are already on the hideous C road!!!
Hi Mysterymouse. I had a mx in September 2014 and have been a uniboober since then. I am part of a Facebook support group called Flatfriends for ladies that have not had reconstruction. They are a wonderful group and have kept me sane with a positive body image since my mx. I am currently investigating reconstruction as like you I’m not sure whether I want to put myself through more surgery. My surgeon wanted me to go to a show and tell evening put on by keeping abreast(they have groups all over the country) in which they talk about the different types of reconstruction and recovery and then you get to see woman that have had different types of reconstruction. I went to East Grinstead and there were 8 ladies that showed us what they looked like in a bra and then took their bras off to show their reconstructed breasts. OMG some of them were absolutely amazing especially the 2 that had used their thighs (this is what my surgeon wants to use for me). Every single one of them were delighted with their reconstruction and never regretted their decision. It was so helpful to go to and definitely worth travelling for and helped make my mind up that at the age of 45 I would like my cleavage back. X
Thank you thank you for all the posts and info, it really does help to feel that when ( still a bit ‘if’) I sign the consent form, it will be INFORMED consent, I am getting clearer about what happens.
I’m pretty much decided to go ahead with the MX and immediate DIEP, listed for 22nd June. Plastix tells me to bring in sports bra to prevent recon breast being unsupported at the side, and that big knickers or light support pants ok for helping tummy to heal.
I have to say everyone I’ve come into contact with has been wonderful, I emailed a couple of questions to the plastic consultant’s secretary and the PS phoned me back to discuss … don’t no one knock my NHS!
And both the breast surgeon and BCN have been happy to have and reply to my emails. This is amazing and has made me feel very well informed and included. So just hope the recon is as good as the pre op care…
I’ll certainly post how I get on and any hint and tips.
Thinking of the forum folk and sending everyone hugs.
I didn’t have reconstruction because I didn’t want all the extra surgery and extra healing time. I too have to watch necklines, bras, and armholes - a small roll of fat at the scar site.
I need a camisole bra or my scar shows if I lean forward.
This thread has been really helpful for me as I am due to have a bilateral TUG in Sept. I have recently had a wobble about whether to just have another mastectomy and become completely flat or to have the recon as well. I’m very active and love to run so was worried about the effects of the surgery on my life. I was put in touch with a lady who had recon in 2015 and she is running 9 marathons in 9 days this year so I don’t think I need to worry about running. I am on the other hand concerned about lymphoedema - my surgeon says there’s very little risk but I am not so sure.
Is it just me or is there very little info out there about TUG recon? I have never even heard of a PAP procedure.
The show and tell at East Grinsted was very informative but there’s not much else to set your mind at rest if you do have doubts.
Hi Mystery Mouse, I totally understand your dilemma as to whether to do the reconstruction. I think you have to be totally bought into the idea, so my consultant says, so that you are in the right head space, positive so to speak. I had a LD Flap recon with implant, which didn’t go well. The muscle was too small and was stretched too much. The implant became badly infected and pushed the muscle to the side. The implant had to be removed and the muscle was permanently damaged causing disfigurement. I have had a lot of counselling to get over the horrible results. I was just preparing for the possibility of a DIEP Flap recon when I was advised to first have my ovaries removed as a precautionary measure via keyhole. It sounded like a good idea and I was pleased that they were being so thorough. Alas the keyhole surgery trapped my bowel and I was rushed into hospital afterwards for a repair. I didn’t get well from this, and was rushed in again a month later when they had to remove part of my bowel which had become attached to scar tissue from the last repair (I know…you couldn’t write it). To cap it all now they can’t do the DIEP. I have been mortified and trying to come to terms with it. I am slim and active but as my scarring is more profound than a straight forward mastectomy would be, it is more difficult to buy clothes with higher necklines and as for swimming and underwear, I am often reduced to tears in the changing rooms. I long for something pretty to wear I really do.
I was unfortunate, but you have every chance of having a successful recon and my surgeon would say that you have to go into it with determination. He also says that psychologically, having a shape again, be it a good result or just a halfway house, is not to be underestimated in giving a massive boost to self esteem and life ahead. You are so young and I would go for it personally, sending my best wishes.
