Which type of reconstruction

Hello, I have recently been diagnosed with ductal cancer and found to have BRCA 2 gene, so need bilateral mastectomy and met the surgeon yesterday to discuss options.

we discussed implants and DIEP reconstruction, I would be interested on opinions on any recovery issues, side effects and any other issues that they don’t tell you. At the moment I have more questions than answers and have just read some complications following DIEP Recon which were not discussed in clinic yesterday. 

SueRos

 

Hi SueRos,

I had mx with Diep recon on the 7th Sept so I’ll to help.
Firstly op is 8-10 hours (I was just one side) although mine was 11 hours, more about that later.
After op I felt pretty good. I had tea and toast back in ward afterwards. I didn’t sleep much that night due to them checking the flap every half hour. I was pretty chatty though and got to know my make nurse who was checking me pretty well, he said the next night that I never shut up the night before!!
I will have to cut to the chase here as it changed my recovery slightly, but my lung was punctured during the op. This is very unusual, my plastic surgeon had done over 100 of these ops and this was the first time it had happened to him. Basically the vein they were using was stuck to my lung so when they cut it they tore the lung, so I had to get a chest drain put in also as a precaution. So due to that the surgeon wanted me to have an extra day bed rest. So op on the Wed and I didn’t get out of bed till the Friday. All that wasn’t nice, bed baths etc - first time I had really been in hospital so it was a biggie to start with. The lung scenario kind of took over everything else for me as I was pretty scared. Nurse said they see about 2 a year, so I guess I was pretty unlucky.
On the Friday I was helped out of bed onto my chair. I wasn’t in any pain at all, but I had 5 drains and a catheter so not easy to move around without help. I didn’t get the chest drain out until the Saturday late afternoon and then they took the catheter out Sunday, so then I was able to move about a lot more unaided, two bags over my shoulders with two drain each. I’m also quite small so showering for me wasn’t too bad as I could just let the drains lie in the floor, I had enough length in the tubes.
Got home on the Tuesday. I was walking pretty upright, walking up and down stairs was no problem, physio were pleased.
I walked down to local pub on the Thursday I’m sure it was, never had a problem.
I’ve never had any pain as such, the areas are all numb anyway. Most of my issues have been from the axilla clearance, tightness for moving arms and the horrible nerve feelings, but you may not be getting that?
Tummy feeling is fine, bit tight and tighter end of day, but it’s fine. My belly button is a bit red looking and not sure what’s going on there, but they seem happy enough with it. I had a little area of skin on my breast that they think might have failed due to loss of blood flow, but they now think it’s superficial and will heal on its own, I just put an inidine dressing on it.
My tummy scar was checked yesterdsy and nurse removed some if glue and there is a wee bit in the middle that she gave a name - something to donwith over healing so could leave a raised bit? So I have an ointment to put on that and cover with a dressing every 3 days. She said it’ll sort it though.
So I’m now into massaging the scars - got 4 areas (tummy, boob, axilla scar and chest drain scar) so going to take a bit of time!!
Any other questions just ask and I’ll try to answer, even specific like what happens in hospital, if you are like me I like to know what to expect! Like wee things like showering, toilet, washing hair etc!

Hi SueRosA21

 

Choosing was incredibly difficult and I had many sleepless nights trying to reach a decission. I knew I didn’t want to be flat. My 1st consultant recommended I had a DIEP but the amount of surgery didn’t sit well and I had to go to a hospital in the next county to have it done. After tugging and pinching they said it was possible to get a C cup and they could do a reduction on the healthy breast at the same time. I was a G/H cup and couldn’t imagine what it would be like. I met some ladies in the hospital who had had the DIEP and they looked amazing and it took some of the fear away (I would really recommend going to a Breast reconstruction meeting if you can). In the meantime I got a new consultant and she really advised against the DIEP, I had my sentinal node biopsy and it had spread to one of the nodes and there was more urgency to get moving. I have a 3 year old and based on the extent and recovery period of the DIEP and the fact it had spread, I finally decided on having a double mastectomy with implants. A less invasive surgery with quicker recovery and reduced risk of further cancer.

 

I had the mastectomy and implants July 13th. However I was also one of the unlucky ones and have been back in surgery twice since. I got an infection begining of Aug (They told me from the start that  it could happen and mean losing the implant), I was admitted and given antibiotics and another drain and I started responding well but the infection opened the wound so I had to have surgery to take it out, clean it and put it back. They covered it with a PICO vacuum dressing to take the moisture away and seal it but after several attempts and some stitches it didn’t work and the wound opened again exposing the mesh.

 

I went back for surgery and they removed both implants (although the other one and healed part of the wound was pretty grim looking. They replaced them with Becker implants which are permanent expanders, they have silicone in them but saline can be added or extracted through ports in the armpits so there’s no pressure on the skin giving it chance to heal and then expanded. Surgery went well, I wasn’t flat (though smaller and slighly deflated). All was going well, they left the drains in for 2 weeks this time but when I was due to have them out the colour in one had changed overnight and I had a 2nd infection (the other breast this time). I again responded well to antibiotics and by the end of the week all was good but there was a slight hole on the other breast which had been leaking. They put another stitch in and stristrips but it was still leaking 3 days later so they glued it…back today and still leaking so glued it again. The consultant is confident it will close now and has given the go ahead to start chemo ( was supposed to start 5th Sep). If it doesn’t heal they are going to deflate it.

 

So 3 months, 6 drains on one side, 2 on the other, almost constant antibiotics, lots of pain -and implants feel weird, very alien and heavy and take a long time to get used to - I still haven’t. I am only just starting to have proper cuddles and can pick my boy up. I am still sleeping propped up but starting to attempt side sleeping. Chemo cancelled 3 times. at least one visit a week to the breast clinic. I kind of regret not having the DIEP but I have no idea if it would have worked. I was happy with my decission at the time (took long enough to decide) and I just have to keep telling myself that. 

 

Good luck in choosing, of course things can go wrong but it  doesn’t mean it will. Go with your gut instinct and stay confident. BIg hugs. xx

Hi SueRos

 

thought I would share my choices too.

 

Diagnosed in April, requiring MX and ANC. Surgeon advised my best option was immediate recon with DIEP and referred me to tertiary hospital. Saw new breast surgeon who advised the same and referred me to Plastic Surgeon. She was lovely but didn’t hold back on all the risks, including writing me a long letter spelling them out. I was then listed for the op… and the days ticked by. I was desperate to get on with treatment and anxious about any delay in recovery from surgery delaying chemo plus my darling son was in the middle of his GCSEs and could do without his mum having major surgery and a long spell in hospital right in the middle of them.

 

I looked at other options - the skin sparing mastectomy with saline bag did not appeal as I didn’t like the idea of it going behind and stretching my pectoral muscle permanently for no long term benefit as I would still be having the DIEP. The implant and mesh wasn’t an option as I am older (and droopy!) and an E cup on other side.  So I opted for just the MX - I was out in 24 hours and full healed with full movement within the month and I started chemo 5weeks after surgery.  

 

I have no regrets about my decision as it was right for me at the time BUT I am so fed up with being treated I cannot imagine I will ever find the time or inclination to voluntarily go back for recon for purely cosmetic reasons. So at the moment I think I will live with my uniboob but guess my views may change as the memories of hospital appts fade! 

 

all the the best to you.  X

This makes me feel a little more positive. Due to see my consultant on the 4th Nov. Decision time

Hi I thought I’d update here, as I posted a reply 2 weeks post Diep and I’m now 6 weeks.
The horrible nerve feeling in arm, has now gone. I think this is important for folk to know, as it really annoyed me, it ended up feeling like raw skin rubbing, but pleased to say I think it was in a out week 3 it just got so much better. Slight numbness at back of arm, but it’s nothing.

The tightness is tummy is gone. This was probs my my least area of concern and it surprised me due to it being the bigger scar. Apart from the first week after op being stooped slightly, I feel almost normal in that area. Can move about just as before, can pull myself up using tummy muscle (Prob like a sit up although I haven’t done one yet) The scar is looking really great I think. It’s very fine apart from but in middle, not sure whether that is due to the fact that perhaps all the work is done in there, or due to my waistline. A bit of numbness still, but nothing that is bothering me.

Stretches for the axilla area are going well. I still feel tightness as I stretch, but the difference in where I can stretch to in just a couple of weeks is giving me the confidence to know that this should be ok.

The areas in my boob that didn’t quite heal are now all fine and ended up being superficial. I started univ the cream on my scars in boob, but at nurse check up she noticed a wee break out of spots. So gave me a different cream. It hasn’t hekoed though and has broke out all over breast and now going down onto abdomen. I’ve stopped using creams altogether. Will call nurse today, but I have radiotherapy planning appt on Monday, so in one hand I know it’s going to get looked at but on another I hope it doesn’t delay rads. The boob is still quite numb, and I’m not confident to massage it much, although stopped now anyway due to the rash.

The plus side is I have a much flatter tummy! It’s weird because it is only the tummy area, do my waist still needs to lose some weight, but what a difference if I wear a tight fitting dress or tunic over leggings, I don’t have that round but sticking right out. I have also been able to eat anything and everything and not put on weight, I’m guessing healing is taking up lots of calories! So a good time to lose weight if you wanted. I’ve used it to just relax and enjoy chocolate and crisps and the food that I denied myself on slimming world, like buttery toast! Back to sw next week though - I think!!

I am going skiing in January (Lapland) and I don’t have any worries that it will give me trouble. I’m even considering cross country skiing which I’ve never done but is such a workout.

All in so far I have no regrets of choosing the Diep.
I hope that this is helpful to those considering. They say it’s a longer recovery, but I feel I can do almost anything now. I don’t lift anything too heavy, more due to worry of risk of lymphodema, so I guess if you had a very young child you have to lift then it’s maybe something to think about. My son is 9 and nearly as tall as me so no chance I’m lifting him!!

Sorry for the typos! Using phone!