Hi
I’ve been posting stuff on the DCIS thread, but have some conerns about reconstructive surgery, so thought I’d make a request for info here. I was diagnosed 6 weeks ago with DCIS in 2 areas so need a complete mastectomy. The doctor I saw wasn’t keen on an immed recon so a mast was booked for june 2nd. I asked to see the consultant (away for my appointmt) and had to wait over a week for him to return from a conference. Finally got to see him and he was much more positive and agreed to an immed recon and skin sparing mast. But the plastic surgeon was away on holiday, so have had to wait a further 2 weeks for his return, and have just seen hm today.
I’m pretty upset actually… He has also agreed with the immediate reconstruction but they only do the LD flap here and I would need inplants too. He talked of expander ones. When I asked about the DIEP flap and being referred somewhere they could do that he said there were so few places that would do that as an immediate reconstruction, and even if he referred me to one of these (he mentioned possibly Nottigham, Cheltenham, Norwich, London) he said there was no guarrantee the PS there would agree to do it, but might still offer me an LD flap. I’ve read lots of negative comments about the LD, and don’t like the sound of muscle for breast mound and really don’t like the sound of inplants - the latter sound like high maintenance with the need for replacing. So I’m feeling there is a recurring theme here - being told I do have choices and they will explore the options with me - but actually there really only is one possible option. To be fair, the PS did spend time with me talking about it, and has agreed to make enquiries about where could do it, but I really don’t know what to do now. A dilemma - do I have an immed recon, but with a reconstruction which is’nt my first choice? This would be quicker. Or do I search for an immed reconstruct with a diep flap - but god knows how long that would take and where it would be? He also said, when asked what he would advise a close female relative, it would be a simple mastect and diep recon LATER! So, now I don’t know whether to relinquish the immed recon and just go for the masect afterall - which I was booked to have just a week ago!! Feel like I’m going round in circles anf getting nowhere. Seems to be so much waiting. Now I have to wait for the PS to report back about where if anywhere they do a diep immed reconstruct. They also kept emphasising how greatly a referral would delay things and how difficult the “logistics” are for scheduling immed recon especially the DIEP type.
So if anyone has any info about best places for DIEP immed recons please let me know. Also if anyone has had a POSITIVE experience of a LD flap let me know.
Sorry to rant here, but the helplines are closed and I started phoning round a few hospitals but couldn’t get any info.
Warm wishes
Lyra xx
Hi lyra…I had a mastectomy with immediate recon about 8 weeks ago. My op was a Diep free flap. I was told by the bcns that the ps was brilliant at these and had never had a failure!! To be honest all I was bothered about was getting the cancer out of me. But after a week or so I appreciated his ‘work’…from the beginning he approached the recon like a creative artist… very charming and very clever at his job. Its still early days for me yet…but I personally wanted a recon ‘made’ from me if possible. He just used the fatty tissue from my tummy. Not everyone is able to have one for various reasons, and he did warn me that if there wasn’t enough tissue he would have to do a tram flap, which is still using the tummy tissue, but muscle is used as well. I do believe the diep isn’t done by many ps as yet, so I guess I was lucky! I cannot give you any info about LD flaps. But if you go onto one of the other threads, you will find other ladies who have. Don’t know if this helps or just confuses more.
good luck with your decision
Helenx
Thanks Helen for your info - can you say where you had your op done?
Lyra x
Hi Lyra
I’m reading this thread with immense interest.I have DCIS and after two lumpectomies and no clear margins I must have a mastectomy too. I’m also hoping for the immediate recon. I can’t have it done at my hospital as they only do mastectomies there so I’ve been referred to another local one.
Like you, I’ve done a bit of research and would prefer the DIEP for similar reasons to you. I have an appointment with the surgeon at the referred hospital on Fri but fear I may be faced with the same problem as I don’t think the surgeon there does DIEP’s.
It is so hard isn’t it? It seems so unfair that we can’t have the choice we want. I too am wondering wheter to have a mastectomy and later recon after all as it seems so unlikely I will find a surgeon and a hospital to do what I want within the need timescale.I’ve got young children and I wonder how practical it would be to have treatment further away anyway?
Perhaps we could try and research this together and try to share any info we find?
Thinking of you,
Love Freddie x
Hi Lyra…have just sent you a pm. Don’t know if it will help …good luck!
helenx
sent you a pm too freddie
Hi
Thanks so much. Nothing in this game is ever straightforward is it?
You’ve really helped though,
Love Freddie xxxxxxx
Good luck Lyra and Lynda…I really hope things work out for you. A little push in the right direction might persuade your ps to get in touch with someone who can do what you want doing. I really hope so.
Will be thinking of you both.
Helenxx
Lyra and Lynda - I may be wrong but surely with DCIS there is not a need for a knee jerk reaction in that there is not an immediate need for the op? Surely then a referral could be made and planned for in a way not possible for urgent tumour removal?
Explore your options and if you can take time to ensure that you get the decision you are most comfortable with. Re the surgeon’s close relative scenario - I think that is a red herring. Let’s face it - he is not likely to be bothered with a mum or sister’s sexuality and if it was his wife how would he know how losing a breast would affect her?
Some studies say women who have immed recon have an easier time emotionally and recovery is quicker as there is only one op. I am upset with my recon but I would be worse with nothing - waiting for an op that, let’s face can be delayed or postponed and so on.
Best Wishes
Jane x
Hi Lyra and Freddie…how did you get on? Fingers crossed you managed to find someone to do the op you wanted!!
Helenx
Hi all,
All the advice received has been extremely helpful. Thank you.Thought I’d post an update on this thread as to how I got on.
I had my appointment on Fri and I’m pretty happy with what the consulant thinks is the best way forward. I’d be interested in any thoughts from others too.Following my two wle’s and still no clear margins as you know I’ve been advised that a mastectomy is necessary. I want immediate recon. I preferred the sound of the DIEP method. The consultant I saw today said she thought this was ideal for me and would be happy to do it but…
She says that she would prefer me to have the mastectomy first with a temporary implant. This would allow for them to thoroughly check that there is nothing more sinister lurking around anywhere.She also said that if the mastectomy showed some radiation would be required then it is not good to do this on the reconstruction from a DIEP as the fatty bit goes all funny.As well as this, I’m also having the genetic test next week which mght lead me to a mastectomy on the other side too.The DIEP can only be done once so it makes sense to wait.
I know the downside of this is more op’s but eventually at least I’ll have what I want. The photo’s she had were amazing too,
Lyra- I do hope you’re okay, have you had any further thoughts.
Love Freddie xxxxxxxxx
Wishing you all the best in the world
Jane x
Hi everyone,
Just an update from me too. I also am feeling much better now. My original ps really pulled out the stops and amazingly managed to get me an appointment at another hospital where they do immediate recon with the diep flap at the end of last week. I went to see them and they are willing to do it, within a month, subject to a couple of checks!! I go back this wednesday to see the ps there, but have already seen the breast surgeon and registrar who both agreed it would be OK. The hospital is much larger than my local one, and do this sort of work all the time, so I also feel I am in greatly experienced hands.
So I’m feeling much more positive about the whole thing, though the thought of the surgery is very scary. All of it is scary though, but at least this way I feel my feelings have been taken account of. I’ve also decided that if it turns out I can’t have the diep flap afterall, and have a LD flap, then that will be Ok, because I’ll know its for medical reasons. Throughout this I have considered and reconsidered the idea of having a “simple” mastectomy and recon later - in some ways this would be much easier - simpler shorter op, no complications if I did need radiotherapy, quicker recovery and getting back to work etc - however every time I’ve thought of this, I’ve come up against how hard I would find it to be without a breast of some sort. So for me personally I think at the end of the day when I have the recon would be more important than the type. And I am aware I am taking the risk of messing up the recon if it turned out I needed radiotherapy. The consultants think it unlikely I would need further treatment, but obviously no one knows for sure.
Thanks for all the support ladies during quite a rollercoaster of a week last week!!!
And Freddie I’m really glad you got a result as well, you sound “happy” with the advice you’ve been given - that this is the right thing for you, and I think it really helps us deal with the enormity and scare of it all when we are in agreement with the treatment we are being given.
Warm wishes
Lyra xxx
So pleased for you both Lyra and Freddie…and you have hit it on the head both of you…whatever works for you and makes you happy with your body…It sounds like both outcomes are spot on for both of you with room for manoeverability if needed.
I am truly pleased for both of you…good luck with your ops and I don’t doubt you will both be very happy with your results!!
Take care both
Helenxxx
Hi Lyra and hi to everyone else here.
Lyra, please forgive me for jumping in here but I’ve been where you are now and have had DIEP operation with immediate reconstrucion on May 11 (6 weeks post op at the mo). I was diagnosed on 13 March with DCIS medium grade ER, large area (10.2 cms!) in upper left quadrant of left breast. The word mastectomy totally blew me away but spurred me on to find out as much info as I could.
At first the only option offered was LD reconstruction but as I’m a 38 E, the surgeon said that I’d have to have other breast made smaller as this operation is best suited to small-medium sized breasts. Won’t bore you for now but, after much research - and reading some amazing discussion threads from the amazing ladies on this site, I chose the DIEP which I had at Salisbury. Personally it was the best option for me as I wanted to return to my favorite sport (kayaking) as soon as possible and the DIEP does not sacrifice any muscles. Also, as my breasts are quite large and I work in a very busy environment, I wanted to return to work looking and feeling as ‘normal’ as possible and still wear my v neck tops! (I’m damned if this damn cancer threat is going to dictate what I can and can’t wear!) and I’m now confident I will achieve this. Having said this, I have complete respect and huge admiration for ladies who have had mastectomies and decided not to recon. At the end of the day, it’s about getting a result that you can accept so that you can get on with your life.
Please, if I can be of any help or tell you anything about this operation (warts & all if necessary!), I would be happy to do so.
Finally, thank you so much to everyone who writes here, this is one of the places which made me feel a whole lot better x
Hi everyone
I saw my new ps today and he’s also said yes, so looks like I’ll be getting my immed diep reconstruction!! No date yet, should hear by monday. Thanks for your comments diepcat, it’s good to know others have trod the path before me, and really helps me prepare for what’s in store. Shall probably have loads of questions - probably increasing as my op gets nearer. At the moment it’s too scary to even think about for more than a second, plus I’m still actually rejoicing that I’m getting it (rejoicing over a 10 hour op, very strange…)
Freddie have you got any dates yet for your op, and how are you doing? I feel glad I’ve got the doing all the research and deciding which option bit over. Now it feels like a different “stage”.
And Nell, thank you so much fro all your encouragement and support. I’ve been checking out other threads and it’s really helped to hear about your journey and recovery. Makes it all feel more manageable.
Warmest wishes
Lyra x
Hi Lyra what good news…you must feel so excited. Feel welcome to join us on the other thread about the diep flap…some have had it done, others have just had it done and one other is waiting for one done this month…so lots of different stages, but useful to hear each others comments.
Freddie how are you going on too…hope things are working out for you as well.
take care both
Helenxx
Hi everyone
Just a quickie as it’s late , I’m really tired and all this juggling hospital appointments and working at the same time is taking it out of me. Plus had to have a couple of glasses of wine this eve after driving back after my MRI scan (didn’t like that). Have got a date now - July 9th !!! Pre-op this Friday. Will write more when I can.
Hope all is well with everyone,
Lyra x
Fantastic Lyra…I bet you are so …ooooooooo excited! Not long now then. All the best for your pre-op …its a doddle! But lovely vibes your way for your big op…*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*
How are you doing Freddie? Hope you have a date too!!!
Take care now
Helenxxx
Hi everyone
Don’t know whether to be excited or nervous about my op the week after next!! So pleased to be getting what I wanted - until I remember the enormity of all this, and that this is quite major surgery which will incapacitate me for a while … Had my MRI scan yesterday and on Friday I have my pre-op. I’m winding down things at work and hope to give myself a bit of time to mentally prepare myself…Got to go and make tea now… speak later,
Lyra xx