LICAP surgery

[Emma_B]

True about the bras, I also used to find that wired bras rode up all the time (I didn’t have much to fill them with even before surgery 😆). So I look out for really elastic bands now, M&S and sainsburys do some good ones. 

Also true about the raising of the arms… same for me x

[Ricey]

I have just read through this thread. I am new to the site so forgive me if I should be posting elsewhere. 

I was diagnosed with ER+, IDC in March and because of the fact that my previous mammogram was clear in June 21 and my tumour is around 3cm I had an agonising wait for the HER2  result. That came back negative (I had convinced myself it was positive because of the growth rate).

My surgery is planned for the 20th May, lumpectomy with partial reconstruction and sentenial node biopsy.

My surgeon has said she will take tissue from underarm/back to fill the void       'pedecal perforator flap' which I am presuming is the LICAP.

She has also advised not to wear a restrictive sports bra after surgery. Any advice on good bras would be helpful.

I have read the comment about the shark bite scar. Does this surgery always have this? It is so hard to find information about this surgery and its a natural thing to worry. I am one of these people that needs to know everything so that I can process it. A link to the actual surgery would benefit me if anyone has it and if anyone know where I can find 'real' photographs post surgery I would like to see those too.

It has been an emotional roller coaster of a journey so far and I've only just started but reading the positive comments on here are helping. x

[yjj]

Hello x

I had LICAp too, just less than a year ago.  I'm really glad I did, the boob scars are very faint but the larger flap scar is noticeable but you can't see it under clothes or most bras.  Now talking bras I think it's worth mentioning that since surgery I can't really stand underwires any more than a few hours but I find that going wireless is quite on trend and there is a tonne of choice nowadays.  I had fat transfer to even out symmetry and a large dent as I had a good quarter plus removed. I have a strip of noticeable tissue if I raise my arms but how often do you do that in public?! As my consultant said, don't raise your arms like that then! I'm really glad I went for it x good luck and keep us posted xx

[Emma_B]

Hi @dragonflygirl ,

I had the LICAP and it went better than I could have imagined. I was lucky enough to have very little pain and although the scar is very big, it healed really well and it doesn’t bother me at all. Other than a decrease in size, amazingly the breast shape was pretty much unaffected, although, over the last couple of months a dent has appeared where the tissue was removed (about 15 months post surgery). 
Radiotherapy hardly affected my skin so overall the result has been brilliant. 
I MAY see about having lipofiller at a later date to correct shape but feel that the NHS has other priorities at the moment. 
xx

[dragonflygirl]

What did you end up doing? How did it go? 

[yjj]

Emma - arrghhh I lost my phone and All my contacts and all my pics as I don't back up!!!  Please can you reconnect?!  Number is the same, new phone

thanks and hope u r ok xx

[yjj]

Hello and thank you xx. I’m all Licapped up now and glad I went for this option v much. My surgeon has been brilliant and I’m healing really well. He says that radiation will almost finish my scars to being not noticeable. I have 2 parallel scars top left of boob and obv the shark bite LICAP scar

just waiting on onco DX to see if it’s chemo next or just radiation but will be cracking on with next stage v soon

where are you up to with treatment?  I’m keen to hear how people fair on Letrozole as that’s in the final mix for me

beautiful day - enjoy the spring sunshine xxx

[RenZen]

Hi ladies,

I had LICAP surgery in December. At the beginning i didn't know what to expect as they didn't use the term "immediate reconstruction". The things were moving forward quickly so I didn't have time to research and think. But right after the surgery I knew I won the lottery  - the result is just awesome. And I really like the scar on the side.

This is true that information on Licap is hard to get, I wish I could have seen this thread earlier 😉.  I found that sometimes they call it "hidden scar lumpectomy".

https://youtu.be/DWSISuHttXg

I'm cup 34B. Really recommend a compression post op bra though I bought one in my normal sizing and couldn't fit in for the first 2 weeks ( 3 rows eye and hook front closure). I tried some soft cotton bras instead ( as the skin was sensitive) but I think it caused seroma under the flap after all. Good to prepare more than one bra option.  👌 

Stay positive! X

[yjj]

See Elisabeth your gorgeous kind reply has me blubbing !  You are so very kind, thank you xx

[sailorgirl]

Hi Emma, 

 Ah I see, quite a bit more than me so,I am sorry that I can’t really help with your question. The best I can say is that I don’t think there is an awlful lot of difference in the hardness in my boob now, a year on, than soon after radiotherapy finished. Slightly different dents and bumps but not much different. Still have the lovely deep “ sun tan line” though 😂. Mammogram was a bit uncomfortable to say the least, may have uttered an expletive under my breath but the radiographer was lovely and did her best to keep as it quick and as carefully as she could, guess it will be tender for a while. 

Keep in touch, I am here if you need me.

Elisabeth xx

[sailorgirl]

Hi Yvette, 

please do not worry that you haven’t phoned, I fully understand how you are feeling. Please phone if and when you feel ready, I will not be offended in any way. But also if you want to chat please don’t worrying about being emotional on the phone, I was the same many a time, it’s normal to be that way and I wouldn’t expect any different, you are going through an unbelievably difficult time. I hope all goes well on Wednesday and I am here for you any time that you need me.

Elisabeth  xx

[Emma_B]

I’ve got 15 days then an extra 4 days. 
5 days at the boob, 15 at the lymph nodes above the clavicle (overlapping the 5 boob days!) and then an extra 4 day at the tumour bed. 
They’re really chucking everything at it. 

[yjj]

Hello

sorry I haven’t phoned yet Elisabeth... I’m a bit all over the place and fragile. You don’t want a snotty blubbering idiot on the phone!!

I think a boost is the 5 day radiotherapy vs the longer several weeks. Mine is scheduled to be the shorter version

seeing the surgeon on weds for assessment 

hope you are both okay ... enjoy your Sunday xx

[sailorgirl]

Hi Emma, 

i had 3 weeks of radiotherapy so not sure that I had a boost? Not sure what that is? Gosh everyone seems to have a very different journey. So far I don’t feel that the tissue is as hard as I thought it would be. Hope this helps. 

Elisabeth

[Emma_B]

Hi Elisabeth,

Just wondering if you had the boost radiotherapy too. If so, did it make the tissue even harder? I suppose it’s a bit hard to tell if the boost makes it worse. 
Emma

[yjj]

Hello... thank you I started to reply but phone rang and I think it deleted?! No idea it seems I can’t focus on anything!

im glad you are a year on and happy with the outcome.. that’s so useful so thank you v much

i made my decision on Monday and so just awaiting a date now and keen to get next op ticked off and one more step towards recovery

id love to chat to someone who has been through the same. I think we need to be friends and then I can give you my number or e mail address. I will try to send a friend request??

thank you so so much

yvette

[yjj]

Hi Emma

thank you so much for your reply, it’s so very helpful. I’m so nervous about the whole procedure, this is my second operation as margins were crap as DCIS was discovered as well in pathology after first op

id love to see your pics as weird as that sounds!  I’m not keen on watching the procedure though! I think I’d freak even more...if that is even humanely possible!!

could you e mail them or what’s app if I gave you my number/ email address on a private message? Not sure how that works as in midst of the stress I appear to have turned into a Luddite 

thank you so much for the link too - there is very little info so I agree that it must be quite a new process 

I’m using zip front compression sports bras off either Amazon or e bay. I seem to have a fair few which is good as my operated arm stinks to high heaven irrespective of how many times I wash it?!?! My surgeon said they were great for the purpose. For now I’m not so bothered about shape under clothes as the sports bras do squash ... I guess caring about that will return eventually 

I’m rather freaked about the whole sorry process and I go through all the emotions all the time. I’m starting to feel calmer and accepting gradually, I hope you are okay, you sound very together!

Thank you Emma, you’re a saviour xx

[sailorgirl]

I’ve found the marks and Spencer’s sumptuously soft ones the only comfy ones for me, no underwires for the first time in my life 😂

[Emma_B]

Hi Yvette,

Sorry you are having to go through this.

Yes, I'm 4 weeks post-op now. I did decide on the LICAP and I couldn’t be happier with the result. My breast looks the same shape as it was and is only a tiny bit smaller (plus he got all the cancer out 😊). Where the ‘transplant’ is is hard and a bit lumpy to touch, and there is very little sensation in the skin but I’m ok with that. My lump was also on the outer edge, about 2 o'clock. 
I should say that someone I met during treatment hasn’t had such a good result and will be having some further surgery to correct the shape. 
Also, you do get quite a big scar, stretching from just beneath the beast all the way round to the back. Mine’s about 7 or 8 inches long. But it’s healing well and I can accept it. My mum calls it a battle scar. 

My side is quite tight and I'm still struggling to lift my hand as high as I'd like, but that's mostly because of the cording in my arm-pit and it's definitely getting better each day.

I found a good leaflet here to explain the procedure: https://www.ouh.nhs.uk/patient-guide/leaflets/files/5137Plicap.pdf

I also found a video of the procedure, but I'm a biology teacher so it really helped me to get my head round it, most people probably wouldn't want to watch it but I can send you the link if you want.

Would you like me to send you my photos of what it looks like now and how I was marked up before the procedure?

I think I will also write a blog article about it soon as it seems to be still a relatively rare procedure and people are struggling to find the information they need.

Best wishes, Emma

PS. I'm having a nightmare finding comfy bras that are small enough. So far I've found that Sainsbury's have some good ones.

[sailorgirl]

Hi Yvette, 

I am over a year on from surgery now, just waiting for my first annual mammogram. I found it such a difficult decision at the time but am so glad I went for LICAP. A year on, the scar is fading and I still have two breasts,  albeit with a few dents in the left one! It still looks much better than I thought it would, as I said just a small dent or two, it does feel different to the touch obviously, a little bit more lumpy. The skin has lost sensation a bit where the new flap is in place but this may return and is not a big issue. Overall the end result is much much better than I anticipated and far better than losing a breast.  The lack of photographs is very frustrating I know, I felt the same, the only one I had seen before making my decision actually put me off! The scar looked enormous and hideous! In reality it is a very long scar but it soon fades and as I said it’s hidden under your bra. With a bra on, you can not see that I have even had surgery. I also had radiotherapy which didn’t seem to affect things too much, maybe hardened up the scar tissue a bit. I hope this rambling of mine helps a bit! Come back and ask anything else, happy to answer if I can and good luck with your op. (Happy to chat if that helps but as I’ve said in the past to others not sure how to organise it but sure we could if needed) 💕 

elisabeth

[yjj]

Hello ladies

i think you will both be post surgery now but I am exactly where you were!! I’ve just decided on LICAP for 2nd op as had margin issues and positive sentinel nodes. Had choice of mastectomy or LICAP as my margins are less than 1mm from skin so skin got to come off. Like you ladies I have small boobs and have already had 32mm of DCIS (which we didn’t know about) plus 18mm of invasive ducts. So quite a lot in a B cup and now we need more off.... hey ho!!!!

I can’t find any pics or real info about this procedure. My tumour was in top outer edge of left breast. I’m imagining a kind of shark bite scar?!  I have to have full axilla node clearance too and will Also need radiation so it might shrink and change more afterwards

would you ladies recommend this ?

im desperate for info and confidence boost so someone who has come out the other side with the LICAPped boobs would be so so good to hear from xxx

thanks

yvette

[sailorgirl]

Hi Emma, 

Glad I could be of help. I know exactly what you mean about the photos, I felt the same but never found any of the lumpectomy for comparison. If it helps, my area of dcis was also about 3 cm if I remember correctly and the surgeons advice was go for the LICAP as 3 cm plus margin on a small breast is quite a large area. 

Good luck with your decision and with whatever option you choose, please feel free to get in touch again if you need to. 

Best wishes

Elisabeth

[Emma_B]

Thanks for getting back Elisabeth and describing your experience, I really appreciate it. 
At the moment I’m very slightly more in favour for the licap. 
I don’t think I’m too bothered about the scar, I’m a bit weird, I actually found a video of the licap procedure and watched it which has made me feel better about it. The less I have to speculate and let my imagination run wild, the better I feel.
If only I could find some photos of both procedures, after radiotherapy, on a small bust with the lump in the exact same place as mine and I’d be much happier with my decision! 😆

[sailorgirl]

Hi Emma B

I fully understand where you are, very scared, very unsure. I too was very worried about what to do. Nearly a year on, I am so happy to have decided to have the LICAP surgery, yes I have a long scar around the bottom of my breast and onto my back, a small dent here and there but generally my breast still looks like a breast and with a bra on you would never know I had surgery at all. I ended up having 3 operations in the end, the second one was because I had a haematoma, that was just specific to me and unlucky, then I had to have another as they didn’t get a good margin first time around. So 3 cuts on the same scar but still it is looking good. The worst part for me to be honest was when they put the wire in before the operation, because my area of dcis was deep into my breast near the nipple, I needed extra local anaesthetic but you would need wire I guess even for a lumpectomy. I still have no sensation in my skin on my breast where the old tissue was removed and the new popped in, that is something easy to deal with, the main worry for me was losing sensation in my nipple but thankfully that hasnt happened. All in all, I had very serious concerns about having it done and I nearly faltered, much to my surgeons cheerful annoyance, ( she was lovely,) as she has I guess seen so many woman facing a future with severely disfigured breasts, that her skills can now avoid with this procedure. Whereabouts in the UK are you? I am in Scotland and had a great team. 

The photo on the leaflet about LICAP that I was given before the procedure scared me more than anything and I did suggest to the team that it needs changing! In reality the end result looks far better!  I am very happy that I made the right decision to go with the LICAP surgery.

I am very very happy to chat with you over the phone which may help you but I am not sure about publishing our phone numbers on here, any ideas? I can call the helpline tomorrow and let them know I am happy for them to give you my number? 

Hope this helps.

Elisabeth

[Emma_B]

Hi Sailorgirl, 

I hope you don’t mind me getting touch. I am trying to decide whether to have licap or just lumpectomy. 
I have very small breasts and will have radiotherapy afterwards but the team don’t seem to be able to give me much idea about how the lumpectomy will look afterwards. 
the lump to be removed was 3cm plus extra for margins and it was right on the outer edge of my left breast. 
I’m terrified of waking up with half a breast after a lumpectomy and that it’ll be ages before I could have reconstruction because of coronavirus. But if it ended up not looking not too bad I’d be happy to just leave it and wear a prosthesis I think. 
Id also hate to have the licap and then after radiotherapy it looked rubbish and they can’t fix it cos my skin is so fragile. 

There just seems to be so many unknowns so it’s so hard to decide. 

Would you mind sharing your experience? X

[sailorgirl]

Thank you so much for sharing your experience, it really helps to know that you’re not alone in all this! Glad that you are recovering well. I think the the LICAP, (sorry I got it the wrong way round in my post!), is similar to DIEP, it’s all done in one operation taking tissue from under your arm to replace breast tissue. I get the feeling it’s a newish procedure to avoid mastectomy. My surgeon has said that the area to take away is quite large and on my small breast will not look good and then with radiotherapy shrinking it more, it’s best to have this partial reconstruction.  Hope that your prosthesis fitting went well and thanks so much for the offer of further support, I may well be in touch and hopefully we can support each other! Xx

[Naid]

Hi, I had a lumpectomy back in March. I was diagnosed with DCIS and had a very large lump in a very small breast. There was some discussion about mastectomy because of the size of the tumor and because I needed a major duct excision as well. In the end I had the lumpectomy. My lump was just to the side of my nipple on the outer half of my breast. In the end, they removed all of the breast tissue to the left of my nipple, plus some from behind my nipple and a pizza slice of skin that was over the lump. I'm now coming up on 9 months post surgery and my breast doesn't look too bad at all. It is noticeably smaller (and higher) than the other breast but it is still breast shaped and I haven't lost much sensation. (Bear in mind though: I didn't have radiotherapy and that can change/shrink the breast too)

I decided not to have reconstruction because I really couldn't face more surgery and I didn't want to risk losing any more sensation in the breast and/or nipple, plus, I didn't want to deal with more scars. Instead I opted for a partial breast prosthesis which I was fitted for today.

Overall, it's been tough emotionally but I think in the long run I'll adjust. 

I'm not familiar with LIPAC reconstruction, is it similar to Diep? I definitely think it's worth having a long chat with your team about what they think your breast will look like with and without reconstruction. And also, what you can expect in the way of sensation loss and any other risks.

I'm so sorry you find yourself in this position. It's hellish isn't it. The diagnosis is a shock and then you're on this crazy rollercoaster where you're having to make impossible decisions about things you can barely get your head around, and all of it at a break neck speed. I really do wish you well. If I can help at all, you're welcome to PM me and I can try to answer any questions based on my own experience.

Naid xx

[sailorgirl]

Hi, 

Have recently been diagnosed with DCIS. It’s been a bit of a shock and I feel that I am on a very fast rollercoaster having to make serious decision very quickly. Diagnosis in  the second week of November, op second week of December! 

I was originally told I would have a lumpectomy and radiotherapy but a second radiographer opinion is now saying the Dcis is too widespread and as I have small breasts a large lumpectomy would take a lot and look bad, so the surgeon is suggesting taking the top left quarter of my left breast and performing breast reconstruction surgery known as LICAP. It seems the choice is between a disfigured breast or a large scar under my arm and onto my back.  I have a choice to have this partial reconstruction or not but have to make a decision soon. Has anyone else had this same decision to make? Would love to hear from anyone who has had LICAP and anyone who has opted to not have the reconstruction. Would welcome any advice!