Hi Lisaf, i can't believe how much i have got in my bag already!! like you say, i probably wont use it all, like you, all i will want to do is to get home but you have to do as your told don't you? when i had my mastectomy in 2004 once i got home i came on leaps and bounds, other half's birthday today, so just chilling out now after a nice shower, been doing bits in the garden cutting back and painting keep saying to Chas "garden needs sorting cos i will be recuperating in the garden in the summer" ha ha, look after yourself Lisaf, love Lynn XX
lemoncake, thanks so much for that, glad to see how far on you have come, hope i speed up like you, still shuffling but a bit more upright now. My op ended up being about 9 hours but there was two consultants and a registrar and I had cut a few hours out having second recon some time ago, just gutted about size difference but will wait until swelling goes down.
Lynn, hope your date comes through soon, must admit i struggled but it was more to do with the drugs lol!! so much better when home. I must admit I didnt use half of what was in my hossy bag i didnt have the energy and just wanted to get home lol! I must admit things change daily Im sitting her now feeling much better after a crap day. Defo worthing it in the long run xxx
Hiya Lisaf, lovely to hear from you, how are you feeling now? you getting about better each day? been thinking of you over last couple of weeks, poor you having to go back into theatre!! sounds like your getting there now love, all be worth it in a few months eh? and you've got your holiday to look forward to, I had a pre-op on Tuesday morning so hoping i wont have to wait much longer now for op!! I'm still buying something each week to throw in my "Hossy" bag!! carry on doing well Lisaf, lots of love Lynn XXXX
Gosh how long was your op having all of that done? Mine was 12hrs having a single mx/free tram flap. I am nearly 4wks post op and getting about so much more that at your stage 2wks ago when I was probably walking about 30 houses away and back (I'm no good guessing distances!). I can now load/unload dishwasher, do washing, cook dinner etc but not attempting vacumning, driving etc for another 2wks.
I don't know what your nights are like as mine 2wks post op weren't so good, I would sleep for 1 1/2hrs then wake up uncomfortable and end up getting up and having a cup of tea then sleeping for another 1 1/2hrs and I couldn't seem to break this cycle even though I was tired. I now stay in bed all night although I still wake up briefly when I turn over.
I hope you get on ok today.
hi all, was just posting a copy of another post of mine below so it's still here but just wanted to say so sorry to hear your news Jules, will be thinking of you and let us know how you get on xxxxxx
I'm day 14 post op. struggling a bit with tummy but boobs are causing no pain. I had double recon and when in there ended up with a diep one side and tram other side so bit painful. Unfortunately I had a blood clot so ended up back in theatre 5 hours later, however, this is only a very small number of people this happens too. My boobs are totally different sizes but trying not to bother until swelling goes down. I found the coming of drugs and dizzyness when sitting up and the heat the worst, once some drains came out and had control of my own bed and shuffling to loo myself I felt lots better. My stay was only 6 days in hospital and Im staying with parents to help with some things where I cant bend etc. im back to hospital tomorrow, had a horrid reaction to dressings so covered in blisters and possible infection. However I would say that I think it is amazing what they do, the implant i had was over the centre and up neer my chin so to have two boobs that belong to me is amazing and Im totally in awe of what they do and the care you get.
I think I underestimated on restricted I would be and im impatient, and I am realising that toward the end of the day i need to take it easier more as i get tired and need wee nap. Lots of people say it takes about 4/5 weeks to start to feel more active so im looking forward to that.
Good luck all with op, it is worth it !!! Im hoping to go on holiday in 7 weeks so something to aim for, bit I struggle with is knowing how much I should be doing.
Waffle over.. xx
Hi Juls silly question love, but how you feeling? thinking of you and always here if you want to chat, lets know what your Oncologist has to say, take care, XXX
I'm sorry to read of your secondary diagnosis. You might find it useful to order a copy of the BCC secondary resources pack, it contains information about diagnosis and treatment options. If you would like to order a copy just use the link below:-
Also, if you need further support or just to talk things through please don't hesitate to give the BCC helpline a call on 0808 800 6000. The lines are open Monday to Friday 9 to 5pm and Saturday 9 to 2pm.
Best wishes Sam, BCC Facilitator
I'm so sorry that you've had such bad news. When will you see the oncologist? Let us know how you get on.
Thinking of you
So sorry to read this juls 😞 There is a triple neg secondaries thread in the 'living with secondary bc' section + we are a very friendly + supportive bunch. I will bump it up 4u now. Between us we sadly have a wealth of experience relating to stage 4 treatments + would be happy to support + advise u in any way we can. Will be keeping everything crossed that a new chemo really hits the spot.
So sorry to hear your news - it is such a shock isn't it! I know how you feel as I was diagnosed with bone mets at Christmas and to begin with you are just in a blind panic and think the very worst! There is lots of support on this site though - I would look at the other threads and see which you will find most useful. I have really benefited from reading posts and contacting other ladies in a similar situation - they share practical advice as well as emotional support.
Sending you lots of hugs
Hiya Juls, I am so sorry about your news love i really am, please stay positive, i know thats easier said than done, wait to see what the oncologist has to say next week, try going thru other parts of the forum there maybe some-one who has been in your situation, keep your chin up my love, XXXX
Well im afraid its not great news. Went to see consultant yesterday and my ct scan showed up that the big C has spread to my liver and possibly lung! So much for the reconstruction now. Have got to see oncologist next week and have to go back on chemo as Im triple negative. Am numb at the moment and dont know what to do. Has anyone out there been in my situation. xxx
Well I went to the doctors yesterday as this lumpy rash over mastectomy scar has not gone away, they said they would need to refer me to see the consultant urgently as couldnt rule out that the dreaded C had returned. Had Ct scan anyway yesterday and now have to go up to the hospital monday morning to get results! Im trying to stay as positive as I can but its not easy. Really dont know what to think. The surgeon didnt seem too concerned when she saw it a few weeks ago to discuss my op. xxx
HI Lynn, so glad that your pre-op assessment has come through, lets just hope you dont have to wait too long for the op after! Im going to ring the hospital today and ask how long the waiting list is just to give me some idea. Going for ct scan today, I know I wont get the results today but am nervous all the same.
Hi Lisa, hope you are feeling well?
Glad too bigbird41 that you are feeling better, this journey is like a roller coaster, lots of ups and lots of downs......
Have a great day everyone.
Hiya bigbird41, glad your feeling better love, your bound to have up and down days after all you've been through, keep your chin up lovey, x
Juls, so your daughter had a good birthday, bet it was hectic for you!
Wonder how Lisa is getting on?
I had a letter from the Hospital this morning, have to go for a pre-op assessment next Tuesday! i did have one in September last year, how naive am i thinking that one would be still be valid!! ha ha,
it stated on the letter a date for my op would follow in the near future!! which set my nerves off big time, take care girls, love Lynn 😉 XX
How are we all doing? Well im pooped, a very busy weekend with my daughters birthday! Hope you all had a good one. Only till wednesday to wait and it will be my CT Scan, at last. Going to try and find out as well where I am on the surgery list. xxx
Hi Shoez, Thanks I'm fine, think I just had a bit of a wobble the other day on waking up. Obviously far too long a lie in bed that morning! The scars are healing well, especially my back. I'm due to see my surgeon in a few more weeks so 'Im starting my next list of questions for him.
Thanks EllisB for your PM, a great help, I've posted one back to you.
Its really good to know we're not on our own using these forums and being able to give and receive so much support from others.
I've been kept busy this weekend with my family visiting and a young and playful niece and nephew to wear me out. Hope everyone else is having a good weekend!
Hi Bigbird41, aww sorry to hear you are feeling alittle down love, hope your feeling better soon, when i was eventually offered the reconstruction last July the PS said i would benefit more from the tram flap, (think i have more fat on my tummy to be honest) are you happy with your results so far? take care, love Lynn xx
As you had both ops, I understand you couldn't have the same twice but did you prefer one over the other? I had the LD flap recon as this is what my surgeon recommended at the time. I'm now 6 wks post op but don't remember there being a choice, maybe it's all the talk of a diep tram but I'm now left wondering if I've done the right thing. Sorry girls just feeling a bit down at the moment. 😞
Just want to wish all you girls a great weekend. I have a busy one what with my 5 year olds ballet show photos, and her birthday, not just 1 party but 2! (How things have changed)..... Juls xxxxx
I'm glad that so many of you are having reconstructions - I can honestly say that I regret none of the surgery I've had - even though I lost my first recon as it was skin saving and unfortunately - and very unusually - the bc came back in the skin. Lemongrove - I had the second op as a tramflap because there wasn't enough muscle etc left on my back to do another one - as I understand it they only do one recon from one area ( and I am quite short at 5' 3" and was then only 8st (I'm a bit more now!)I didn't have to have an implant so my boob is all me - albeit me moved around a bit! (My appendicitis scar is now in my cleavage!)
Anyway - good luck to all of you - short term pain for long term gain!
I'm the same Juls, just want it doing asap!! so i can enjoy the summer (if we get one) if weather is still as mild as it has been, want to get in the garden at the weekend and get it sorted, so i can recuperate out there ;-), just wondering if i will need another pre-op seeing as my last one was September?? wonder how long they last? take care Juls, love Lynn XX
Originally my op was after xmas. havent had any boods etc done yet and no pre op assesment, so could be going on to middle of year, although surgeon did say about april. Just have to wait and see. Just want to get it done and dusted before the summer and be able to enjoy it. xxx
Hiya girls love hearing everyones stories, and thankfully not heard any horror ones yet, all good, 😉
Juls, I had pre-op/bloods done in September, pre-op photo's done about two weeks ago! when i last saw my PS the end of January he did say 2/3 month waiting list so that takes me to the end of April, do you have any idea of a date for yours yet?
I'm 50 this year so it will be a nice pressie eh? xx
I am 54 nearly 55.
Vj. Yes the diep is done at some hospitals but if you really want it ask them its your choice. I tion the east route last time but for me it didnt work.
L. X x
Its been really helpful to me reading everyones experiences. I got diagnosed 3 weeks ago and am only seeing the surgeon for the first time tomorrow, so already in state from all the waiting and uncertainty. I know he only offers the LD flap with implant - I don't really want either, I think my preference would be the DIEP but this is going to me more appointments and consultants at a different hospital which I may have to fight to get.
Beginning to wonder if I have that much fight left in me, its been a month already since this started and I feel the lowest I've ever been in my life and I haven't even started the treatments.
Great to hear some of your positive experiences. Thanks for sharing.
Hi Ellis and Lemoncake
Thanks so much your replies have really helped me.
I had an LD flap but had to have it removed and my only option a couple of years later is DIEP, I was worried re: pain etc but your comments have really helped.
Lemoncake , we must be around the same age the jean thing I remember it very well!!!
Hi EllisB, why didn't you go for an LD the second time?
Juls, just looking back at my earlier post I realise that I didn't say that one of the reasons I decided to have the free tram flap was because although I am slim (5ft 8in, 9st 10lbs) I have always - post children - hated my stomach which I felt made me still look pregnant as I don't carry weight elsewhere. This is why I would have needed an implant with an LD flap which I didn't fancy as my wonderful PS said it would need replacing every 10yrs.
I have had all my dressings removed today and am really impressed with both the recon and the tummy tuck. The PS did say he would do a really good tuck for me and that it would be very tight and uncomfortable to start with - hence once again I'm posting in the middle of the night. Its ok during the day but pulls a lot when I lie down. I liken the feeling to wearing several pairs of extremely tight jeans at the same time, the kind you can only do up by lying down and putting a coathanger in the zip to pull it up (or is it only me that used to do that as a teenager??!!) and that was after you'd sat in the bath in them to shrink them - oh the memories.
Why have you decided on the tram Juls. I had bloods/pre-op etc 3 days before op then photos and drawings the day before op.
That was a bit of a ramble wasn't it?
I had a reconstruction (LD) in 2005 and then another (tram flap) in 2007 so I'm one of the few people who can say they've experienced both (strange thing to boast about!?!)
Whichever op you go for does take some time - and afterwards there is some discomfort - and a little pain at first - but you get great pain relief and I can honestly say that after 2 weeks you are really on the mend.
Comparing the two ops - I'd say that the they were pretty similar in terms of pain etc.
Anyway - good luck - I have never regreted either op - and the short term problems were well worth it for the benefits of feeling normal and no need for prosthesis!
Think I've decided to have free tram flap op now, even though like you im scared about it! How long do you have to wait for your pre op bloods/swabs etc as had nothing from the hospital? Feeling more positive about it now since hearing from others who have been through it. Hope Lisaf got on ok, just have to wait until she is well enough to email and let us know. xxx
Hi Juls, have the comments helped you with your decision? i know since i've been on this site i've had loads of good advice and tips, and although i am still nervous/scared of the op i'm feeling better about it (if that makes any sence) been wondering how Lisaf is getting on, her op was today wasn't it? i bought some bra extenders from Amazon yesterday only £3!! weather here very mild but damp! take care, 😉 xx
Hi Lemoncake, thanks for that, im glad all has gone well with the op. My main worry at the mo is waking up to find that it hasnt worked and of course the recovery afterwards. You sound amazing though, just hope Im back up on my feet as soon as you.
Good luck to Lisa for your op, I hope all goes well.
I agree Cathie that its only you that can decide to go ahead with a major op and like you said its nice to be able to choose! Hope you get some bright weather in Scotland soon.
Hi Shoez hope you get your date through soon xxx
Wow lemoncake that's amazing to be doing so well so soon afterwards. I go into hospital tomorrow for a double flap on Tuesday so thanks for your post xx
I am 10 days post op of mx and immediate free tram flap recon. I decided to go for this op because I didn't want an implant which I would had to have had with a back recon. I had to have some muscle taken and mesh inserted as I have Crohns disease which can make the veins a bit crumbly so the PS needed the blood supply from the muscle and might have had to use extra from my ankle if more was needed, amazing, I can't imagine how they do it.
Luckily the op went very well although it was 12hrs with another couple of hours in recovery. I felt very sick and horrible for a couple of days afterwards (I'm not very good with ops) and quite uncomfortable but every day feels a bit easier. Today I went for a short walk with a friend to a pond about 5 houses away and that was quite easy, she was amazed how upright I am this soon after op. I wake up lots in the night due to feeling uncomfortable but apart from that its not too bad.
Hope this helps, please ask any questions you want to.
I remember the same feeling about the mx operation (unplanned) Versus Recon (Planned). My partner and some friends thought I was mad to undergo such a big op without 'needing it'. My response was to say it felt like the closure I needed after the MX.
No-one else but you can understand what a cancer DX does to your confidence, self esteem or physical appearance, so although I understood they were just worried for me,the recon was nothing compared to the original DX.
I still feel it was the best decision I made, as Id felt up till then that I hadnt had a lot of choices.
Keep well and hope you get the date soon-and glad youve got the nice weather. Send us some in Scotland its GREY GREY GREY and now very wet : (
Hi Shoez and VJ and all the girls messaging on this subject. Hope you've all had a great weekend, the weather is at last improving! Makes you feel so much better when the sun is shining.
V,I like you were concerned about the strength and how agile I would be to do sports, especially since some of the mobility etc is already weakened, hence swaying towards the free flap op. All I keep thinking about though is the recovery afterwards and the success of the op. I know I have to keep positive about it, but I am worried this time (think it's because it's my choice to have the op, where the mastectomy was a necessity). Keep thinking about my husband and daughter and how hard it will be for them, although I know that it has to be what I want. Role on op date, hope I hear soon. xxx
I'm in the same dilemma as to which op to have - although I want mine at the same time as the Mx. I have concerns about loss of back strength and ability to do some sports with the LD so thinking about going for the TRAM, but will have to travel as my hospital doesn't do it. Might have to fight for what I want!
Good luck with your recon.
Bigbird41 well done to you! four weeks and sounds like your doing great, soo pleased for you! i was diagnosed in 2004 with DCIS, just waiting for my Tram Flap date! can't wait nervous but excited, take care, Lynn xx
Hi Juls I'm like you at the moment just waiting for my date, finding the wait nerve-wracking to be honest! I'm excited but terrified, hope you get your date soon love, bigbird41 sounds like she is doing really well,I have great-nephews who are aged 3 and 4yrs and i play and roll around the floor with them all the time, after my op they are going to wonder why "aunty lynn" can't act daft with them for a while! take care, xx
Thanks for the email, great to hear from you and glad your recovery is going well. I am hoping a op date will come through very soon, its the waiting thats horrible. I hope my surgeon is just as careful as yours with the stitches so its nice and neat.
Il keep you posted.
Diagnosed with DCIS Oct'11, I had 3 lumpectomy ops Oct, Nov and Dec followed with an Mx with LD flap reconstruction op end Jan '12 so am now 4 wks post op. I also had an expander implant inserted.
I was really concerned about what I was going to look like afterwards but 4 wks later, and with only a little swelling left I am so much happier!
I do have a large (long) scar on my back but its really thin and and I cant credit the surgeon enough with his stitching, fabulous! Like I said its only 4 wks so imagine how much better in 4 months or a year.
It was a big op for me, apx 4.5hrs, and I was in hospital for 7 days however although it didn't feel it at the time it was definitely all worth it for me as my results showed I had DCIS in all four quadrants. I count myself extremely lucky that none of it was 'invasive' so know I can move forward.
I know you've chosen the Tram op, which I cant comment on, but just thought that as Ive only just had my op so recently it would be good to let you know that things do get better quite quickly. I still have some follow ups to come i.e. the expander/valve replaced/removed and the nipple reconstruction will happen later.
Im sure you'll get your date through quickly, keep us posted on how you get on. Good luck!
Many thanks for the replies.
I have decided to go ahead with the free tram flap and have met the surgeon and it has now made me feel more confidant.
She explained that in any cases until you are on the operating table, it is hard to tell how well the blood vessels etc are situated. Also that my new breast may be a tad smaller. The operation is a huge one and not to be taken lightly. She showed me lots of photos of ladies that had all different types of reconstruction, and gave me the pros and cons to them all. I still think that in the long run that this will give me the best outcome, and that it will prevent me having to have too many future ops.
I am worried that the new breast wont take and will be back at stage one, but I suppose its the risk you have to take. Also I have a young daughter who is going to find it hard to start off with as to why I cant play with her as much whilst Im recovering.
Just awaiting a date to go in for my pre op, hopefully sooner rather that later as I just want to get on with my life now.
I opted for a TRAm flap op last june.I had seen "the work" of my surgeon on an other woman and on pictures and was impressed.I went along mainly because of this and because he has a brilliant reputation. Here in Germany a pediculed Tram-flap is supposed to be old fashioned but I'm very happy with it.The stomachmuscle is a bit tricky at first:Mine went into a spasm every time the temperature changed or when I walked (?) running or exercising didn't effect it...After 3 month i could do normal sit-ups and do not have any backpain or other SE.I have seromas al around the new breast, probably because of to much activity, that is very uncomfortable but they are hardly visible and seem to vanish slowly so don't overdo it.The tummy tuck meant that I lost a dress size,when i wear a bra you would't notice anything but a fine line.
Hi girls, just to say i'm waiting for my recon date hopefully anytime in the next 8wks!! had my mastectomy (left side & calcifications removed from the right side) in 2004 and had been refused reconstruction which i was really upset over, but in July last year i went for my yearly check-up and met a new surgeon who was gobsmacked at the thought i had been refused reconstruction, he decided to send me for some tests and a pre-op! and everything came back fine hoorayyyy!! recon here i come! i am having a Tram Flap, last week i went for my pre-op photo's, really excited but very scared at the same time, but since being on this site i feel much easier with the tips and advice i have been given especially by nonsuch, who has been a godsend! XX 😉
I'm kind of in the same position as you as I have to make a decision in the next two weeks on what type of recon I want to go with my MX next month. I can have any of them, so have to weight up the pros and cons for all of them! An extenuating factor for me is that after being diagnosed and having WLE and SNB in London, I have come back to my home country New Zealand for chemotherapy and now the MX and recon, as this is choice I was given based on lots of grey areas in my diagnosis (extensive lymphovascular invasion being the main one!) so I have to factor in an eventual long-haul flight back to London which I will have to be medically cleared for.
At the moment I'm leaning towards a standard TRAM flap rather than the one involving micro-surgery as it's less time on the operating table and gives much better long term results than an impant (even though an expander plus implant would be much less recovery, it involves two operations with a three month wait in between, so for me I will be looking at three months plus before I can head back to London) and another factor for me is that micro-surgery is only performed at one hospital where I am and that unfortunatley doesn't have the greatest reputation (I also have very bad memories of it from when my grandfather was there on two occasions) and the standard op is performed at an almost brand new super clinic where the facilities are much better and I would be in a room by myself or with just one other.
The main thing I'm concerned about with a TRAM flap is the loss of tummy muscle strength, but the plastic surgeon I saw said this can be regained, and I have a very good friend who is a yoga teacher who has said he will put some extra exercises together for me for when I get back to London, as he is currently doing this for a client of his who had a TRAM recon in January.
Any advice about having the TRAM flap op would be very gratefully received!