Hello everyone, I started this post nearly a year ago now and I have read your more recent posts with interest and thought you might like to have an update on my progress. Well i got the best xmas present ever on Dec 10th 2012 I had surgery to reconstruct the breast I lost in 2010 and remove the other breast and imediately reconstruction that one using the DIEP method. I am now nearly 12 weeks post surgery and life is great with my TWO boobs! Ok I have no nipples and scars, but they are neat, a good shape and more importantly mine. Surgery was 9 hours, which was fine for me as I was under but I know it was a hard day for my Husband, Mum and Dad and all my family and friends, I had there suport 100% as they knew how unhappy I was with only one breast. Recovery is fine as pain releif was managed well and with my families support I was able to do nothing but rest and recover. The one thing I would like to say to any one considering reconstruction, risk reducing surgery etc. is take your time, research your options, ask questions, ask why each different method is suitable or not for you. I choose DIEP over implants because they would be my flesh, they gain weight with you, lose weight with you, grow old with you and given that I am 33 nearly 34 i still have alot of living to do and the thought of having to have 'maintainece op’s ’ to replace implants in the future put me off. I can have nipples created and tweaking to my breast in the course of this year but that is up to me when and if I bother as they are quite even in size. Please feel free to ask any questions I will do my best to answer them honestly.
Take Care
Jo
Hi Jan
i think your daughter can ask her gp to refer her or her breast surgeon can refer her to a plastic surgeon… again some plastic surgeons are better than others and you can probably google your horsp to find out which ones work there and who gets a good reputation.
the implants plus expanders can be done on women who have had radiotherapy but i think they prefer to do it on skin thats not had radiotherapy… and its more likely to be easier to do on women who origianlly had a wle than women who had an mx… even as the tissue tightens with the wle there is still more skin avalable… good luck with her appt … let us know how it goes.
hi Jo
so glad you are happy with the results of your surgery… hope everything continues to go wellfor you.
take care
Lulu x
Hi Lulu,
Thanks for this. Yes we have been looking on the Doctor Foster website and found a list of consultant plastic surgeons who specialize in this type of surgery on the NHS. There are some very promising ones there and we are going to pursue them before my daughter makes her decision. There are quite a few blogs on the internet of young women who have had this type of surgery prophylactically in their twenties and some of their results are quite amazing. There is a lot of mention of ‘Alloderm’ in the good ones which I think may be a type of material similar to that used in ‘stratice’ (sp?) techniques.
My friend up in Scotland who had breast cancer and immediate reconstruction was automatically referred to a plastic surgeon who worked alongside her surgeon which she seemed to think was standard practice in her part of the world. The PS in Edinburgh is one of the top ones and I have to say that I was amazed at her result. It was indistinguishable from her other side!
I’ll keep you up-to-date about how we get on.
Love
Jan
x
Jan have sent you a pm hope you get it
Wendy
Hi Wendy and all,
Update on my daughter’s progress with her prophylactic double mx and reconstruction quest (due to BRCA 2 for those who don’t want to read the whole thread again!):
She got referral to a surgeon in Leeds whose profile on the Doctor Foster website seemed the best fit for her case and very quickly got an appointment which was last week. He was very articulate and explained the pros and cons of the different techniques very clearly but said that he only did the latimus dorsi (sp?) flap method for women with my daughter’s build (very slim). This is what I had but my daughter doesn’t want this method as she is very athletic and doesn’t want the loss of muscle in her back. She also didn’t much like the idea of the op I went through and the prolonged recovery time. The first surgeon we saw at our local hospital was so nice (but very self-deprecating which was a bit disconcerting to be honest - maybe it’s a gender thing!) but the second one confirmed all that she had told my daughter about the expander implant/strattice method that she was offering so my daughter now feels comfortable in going back to her at our local hospital to go forward with this method. The recovery time will be shorter but the risk of infection is higher with this method seemingly.
My daughter is now considering whether or not to have nipple preserving surgery. I have just had my nipples reconstructed (2 weeks ago) and am delighted with the results. It is amazing how much having nipples changes the appearance of the reconstructions and distracts from the scarring and slight unevenness. The op, which was actually 2 1/2 hours long, was conducted under local anaesthetic only. It wasn’t at all painfull and I watched with fascination throughout! I will have tattoos in around 3 months time which I hope will be the end of this whole roller coaster journey! Fingers crossed. Psychologically I feel that the reconstruction surgery, while very tough, had been well worth it and a couple of my ‘chemo’ friends who have also had it done feel the same way so I would recommend it to those who are considering it on that basis alone. Please feel free to pm me if you would like to see pictures. I haven’t taken any yet but will try to if anyone is interested.
love and big hugs to all
Jan
x
Jan
Thanks for update I am very interested in following your story. I had bilateral mx a week ago with Becker expanders so will also keep you updated but at the minute feel quite up beat about it. Can you please explain to me about the strattice mesh bit of your daughters op.
Which hospital will your daughter be treated at?
Glad you like your nipples I am sure it makes you feel complete.
Thanks once again
Wendy x x
Hi Wendy,
I’ve never heard of Becker expanders! Does this mean that you didn’t need LD or Diep treatment? The strattice method involves the use of pig skin with implants I think rather than your own tissue although I’m no expert. My daughter is going back for the next consultation at Doncaster Royal Infirmary where I am having my treatment. She has got a new appointment today for 28th May.
Yes, the nipple reconstruction wasn’t my idea as I thought I wouldn’t want to keep going but my daughter insisted! I am her guinea pig!
Love
Jan
x
Hi Jan
The Becker expander is a implant put under the muscle at time of mx and then gradually inflated. They over inflate them let down slightly to give a bit of a droop. It is permanent or you could exchange with silicone implant at a later date. They are sometimes called tissue expander. . So assume your daughter can have this strattice mesh and implant at time of Mx and maybe they do not insert under the muscle. My daughter does not have any spare flesh for any other type of surgery I don’t think.
Wish your daughter well for 28th for me and hope she gets all the answers but she might want to ask about the Becker or at least research it before she goes . It’s a mind field isn’t it.
Love Wendy x x
Hi ladies
all reconstructed breasts should have the implants placed under the muscle but there is much less muscle than skin so the muscle covers the top half of the implant usually and the strattice or permacol makes like a bra to hold the implant in place at the bottom. Your own tissues meshes with the pig skin and its meant to give a more natural look. Alloderm is similar to strattice and permacol which are both from pig skin, but from what i recall alloderm is made for human skin which has been specially treated but. Dont think its licenced here in the UK although that may have changed in recent years but havent heard of it being used here. depending on the type of mastectomy and reconstruction she is having they may not need to use expanders… They tend to be used more so when all the skin has been removed and if the lady has had radiotherapy as it increases the size slowly over a few months… Whereas a somebody who hasnt been affected and is having a skin sparing mastectomy is likely to have enough tissue to put in a permanent implant and not need to enlarge it over Time. I think if my daughter tests positive and decides to go down the route of mx and recons she will probably be best suited to the implant too as shes very slim.
jan thanks for the update with your daughter… My son has a genetic appt in june to discuss getting tested and my daughter is seriously conidering it now too, shes going to chum him to his appt and may get the mouth swab done as sges needdle phobic. My son unfortunately has a breast lump behind his nipple and as a hosp appt on 20th… I don think its anything serious as hes only 18 and its quite round and uniform in shape now and very central, and has grown quite quickly so for me thats reasurring… When i first went with him to the doc it was firm, painless and irregular shaped and gp refused to refer him to the breast clinic despite me being brca2 and him having a 50% chance if carrying the gene… That particular gp wasnt very reassuring so took him back to see my own gp bd she said seeing its she would refer him just need a bit of reassurance it is only on one side and its most likely gynaecomastia which is just a swelling if the breast but just wanted him to get it checked by a specialist not by a gp who has probably never come across male breast cancer in his life.
I am being treated in Edinburgh too and our bilateral Mx and reconstructions are usually done by a team the breast surgen does the afftected breast (if your have had bc) and plastic surgeon does the other side… Youll need to pm me the names to see if they are the same as my surgeons.
good luck for your daughter on the 28th.
glad you are happy with your new nipples… Iv seen some excellent results.
wendy im pleased to hear your upbeat about your new breasts.
Take care
Lulu x
That explains a lot Lulu. Thank you so much. I hope your son has the all clear really quickly and then you can relax a little. This gene business is awful isn’t it? Most of my family seem to have inherited it unfortunately.
I will give an update when my daughter has had her appointment on the 28th. I get my stitches out on Monday too.
love
Jan
x
Hi Jan
I too am now on the double mx and reconstruction quest. I was diagnosed with TN BC in my left breast in Nov 2012 (I was 35 when diagnosed, now 36) and had a lumpectomy, WLE and I’m mid way through chemo now (FEC-T). I also discovered I am a BRCA 2 carrier (despite no family history) and so am currently researching all the surgery options and have another consultation in a month. I was happy to find this thread as it’s very helpful to hear that your reconstruction went well and that you are happy with your results as this is a scary decision to make and I’m a bit overwhemed at the moment. The road ahead still feels very long.
One question I have is how soon did you have the surgery after active treatment? It has been suggested that if I decide to do this post chemo I won’t need radiotherapy but I’m wondered if it is better to let your body recover from the chemo first so that you have the best recovery result from the surgery?
Best of luck to your daughter with her next consultation.
Pixie x
Hi Pixie,
I was diagnosed with Grade 3 TN BC in July 2011 and had chemo first prior to mx in December of that year. I then needed to have Rads. I wasn’t considering reconstruction then at any rate but when I got the BRCA2 diagnosis in May 2012 I decided to have a second MX and double recon using the LD flap method. I had this surgery in September 2012 followed by oopherectomy in November. To be honest I was desperate to have rads as my sister who sadly died at the age of 45 just a couple of weeks after my diagnosis had had the same treatment as me minus the rads. She had a first BC diagnosis at the age of 40 and despite clear lymphnodes got secondaries a couple of years later. I was therefore anxious to do everything I could to try to prevent that happening to me. I’m not sure this helps you with your dilemma though. The reconstruction surgery is very tough and I don’t think I would have liked it any nearer to the chemo than I had it as I feel you need to feel quite healthy and strong to get through it and recover well.
Lots of cyber hugs while having your chemo. That was definitely the worst part of the treatment for me. Thinking of you.
Jan
x
Hi Jan
I am really sorry about your sister. It must have been terribly hard to cope with that and your diagnosis at the same time.
A huge thank you for sharing the story of you and your sister. It really has helped me. I am also grade 3 with no lymph involvement but I’m now determined to throw everything possible at this while I have the chance. The TN diagnosis was scary enough to begin with but then finding I had the BRACA2 diagnosis was the icing on the cake. I don’t post on here a lot but the weight of making the decision to opt for the surgery was overwhelming me with so much information thrown at you at once. It is hugely beneficial to share the experiences of those who have actually been through this and know what it feels like. I am now armed with a million and one questions for my next appointment and I want to do the surgery - it’s just a question of timing!
I hope everyone has a lovely weekend.
Pixie x
Hi Pixie
I have just had bilateral Mx 8 weeks after chemo. I have also had immediate recon with Becker implants and so pleased I have done it.
i had Tn BC 14 years ago and was diagnosed last Dec with another Tn 48mm tumour. They tested me again and found I have BRCA1 so although chemo had actually obliterated tumour the choice for surgery was a no brainier for me.
I have 2 daughters and the youngest one has tested positive and is looking into preventative surgery. She is 30 and found out on honeymoon a couple of weeks ago and she feels also she needs to reduce her risk. I am gutted for her.
Any questions about my surgery pleas ask . You can pm me if you like.
Wendy x x
Hi Pixie,
Like Wendy, my youngest daughter has also inherited the gene and is embarking on the double mx/reconstruction journey. We are seeing the consultant again for the 3rd time after a referral to another consultant next week. It’s so tough for younger women. She is now deciding whether or not to have nipple sparing surgery and I think will have the tissue expanders. Please feel free to pm me too!
Jan
x
Wendy/Jan
Thanks. I’m sure I’m going to have many more questions after my next consultation. It is hard but I think your daughters are doing the right thing. I wish I’d known before I actually got BC. The chemo is horrible and by the time I’m done with treatment it will be a year. My mum has 3 sisters and my dad a sister and none of them have been affected or their parents so I had no known history to alert me. Oh well at least I can do something about it now.
Pixie
Jan
Any idea what % extra risk from nipple sparing Mx and are they keen on doing it ?
Pixxie
Hope things go ok for you. Yes I also wish I could have had preventative surgery. I did not have much family history only a cousin that has the same BRCA1 gene as me. My Mum must have passed down the gene although she passed away at the age of 64 with no sign of cancer
Wendy x x
Hi,
I believe it only increases the risk by around 1% to 2% and still leaves your risk well below the national average. I also think that it will be possible for my daughter to be vigilant as the nipples are so visible aren’t they?
Jan
Thanks Jan. That was my thinking and my daughters one dread is to loose her nipples. It’s a big thing when you are only 30 and in your daughters case younger. I am struggling a bit with the whole thing if I am honest really feel for her.
Wendy x x
Hi everyone,
Looking for a bit of advice or support so i was relieved to find this thread! I’m currently having appointments regarding a double mastectomy and reconstruction. I had breast cancer a few years ago when i was 31 and thought i had (hopefully) seen the last of it. I tested positive for BRCA2 a couple of months ago and have somehow ended up in this situation. I was very sure that if i tested positive for the gene i would certainly have the surgery but now i am terrified and completely overwhelmed. I just don’t really know what to do and am finding it really difficult to talk to friends and family about it, which is not like me!