Can someone please help me urgently?
I was first biopsied on 3.12.07 because I had 2 solid lumps (one with a shadow behind it) and several clusters of micro calcification in my right boob. They pierced my artery whilst doing the biopsies and I was left black and blue and had a huge haematoma in my breast as a consequence. I had a wide local excision on 25.1.08, when they could only pin point one lump to remove instead of the two. (the other lump with the shadow,I feel, was hidden by the haematoma). I was told on 13.2.08 I had intermediate DCIS in the clusters and other tissue. They said the edges werent clear in 2 places and I needed another smaller op to get clearance and that is all the treatment I needed. They wrote to my doctor twice saying this. I argued that there was still one lump still inside me for weeks and weeks and have never had the egdes cleared . AN MRI showed everything still hidden by haematoma.They said I could consider a mastectomy if I wanted or have the edges cleared and wait 6 -12 months for review when they might be able to see more clearly.
I went for a 2nd opinion and was told without doubt that I needed a mastectomy . Moreover they have picked up from the MRI that I have it in my other boob. I found out on 21.4.08 that I need a double mastectomy.
I have been back and forward to hospitals for 5 months and am desperate to get the cancer out of me. I saw a plastic surgeon yesterday who says they have provisionally booked 17.5.08 for my bilateral mastectomy and recon. I saw him for first time 4 weeks earlier when I possibly only needed one done. We agreed on a DIEP recon then. Now yesterday he suggested an LD with implants as he couldn’t guarantee my size with the DIEP. I mentioned theTRAM ops which use your muscles as well to bulk out. He doesn’t believe in doing those at it compromises your stomach muscles. I was all set on having a tummy tuck as well.
I have been thinking about it overnight and rang the breast nurses today to see if I could speak to someone re TRAM recons especially the free TRAM. They have said I have to have what he does as he is in a team with my breast consultant. To speak to another team and a different plastic surgeon there who does do TRAM recons will delay my op. I have had to wait 4 weeks to see the plastic surgeon yesterday and feel he is limiting my choices and I would rather not have implants if possible. I am 10-12 and 4ft 11 in , 9 stone and 36c. Would I get volume with a tram and should I wait to get a second opinion or go for LD and get the cancer out of me after 5 month?
Thanks to anyone who reads this.
Maxinebev
Hi Maxinebev
my situation is abit different to yours but I can advise you on LD reconstruction, I had one masectomy and recon on 10th January and then went back on 27th march for the other side too. I must say I didnt really get a choice because I stayed with the team and surgeon that im under and didnt want to move hospitals. This was the operation they wanted to do on me. I felt safer and trusted them. The cosmetic result is fab and I am actually a little bigger than before. They move your back muscle round to the side/front and wrap an implant in the muscle so your body then accepts it! I had fluid on my back called seroma and had to have drainge for 4 weeks but it doesnt hurt and becomes more of an inconvenience in the end. Personally i think i would go for it and have LD recon done as I have had great results from this. Saying this you are entitled to choice and if you wish to go somewhere else for a second opinion you can. By the way implants come in different sizes and shapes so they can still make you fairly big if you wish!!! Good luck with your decision and ask me anything else if you need to. all the best
bakers
Hi maxinebev
You may find the breast reconstruction booklet produced by BCC useful to read, it includes lots of information on different types of reconstruction. It can be found by going to the following link:-
breastcancercare.org.uk//docs/breast_reconstruction_dec06_web_0.pdf
I hope you find it helpful.
Kind regards
Sam
BCC Facilitator
hi MaxineBev - gosh you have had a rough ride! I was diagnosed with lobular cancer in one breast and told it could also be in my other breast on 28th Feb.
Had a full mastectomy with LD reconstruction in one (the other was pronounced clear after a MRI) on 8th March and am now into cycle 2 of the Tact 2 chemo trial.
My specialist was brilliant and though I had private health care my NHS op was scheduled for 12th March…I only went private so that somebody else could
have my NHS slot.and am having my chemo NHS.
Before I had my reconstruction I was shown all the options - in full detail and colour and was not pressured into one or the other. I picked the LD as it looked the
least invasive and a simpler operation. I was a 36dd and so have an implant. The scale of the TRAM looked quite scary.
My op was 8 or 9 weeks ago and though I still have quite a bit of tightness and some numbness the actual recon is very good and virtually the same size as my other
one, I have actually lost some weight so it is slightly bigger but it is still a bit swollen.
I won’t pretend that it is painfree but the end result is good and I don’t see any problems with wearing strappy dresses or bikinis. People cannot even tell
when I am in a bra and pants…and because you are given exercises to do at least twice a day my stomach has decreased in size.
Go for it as I am sure it will be worth it and you have waited long enough as it is!
Lots of love x
Hi Maxinebev,
Just read your thread. I can see how stressfull things have been for you for the last few months, and just wanted to see if you had thought about maybe opting to have the mastectomy surgery asap, so the cancer can be removed, and then having a delayed recon? This way you may feel less pressurised and rushed into making a decision on what type of surgery you would be happy with.
I will be having preventative mastecomy and expanders implant recon in June. But was originally looking at a Diep. Decided due to the length of recovery and others issues to opt for implants now, and Diep in about 10 years time once finished family ect… so I do know it is possible to have delayed recon.
I hope you have some support at home too, it’s tough to go through this on you own?
Carol
Thanks for your comments. They are much appreciated.
I would really like immediate recon Carol as I think this is best for me, but thank you so much. Am 52 now so dont want to go through the DIEP later as I will be too old!
Thanks holly56. Your comments have cheered me up as I have been worried sick since Thurs about whether I have made the right choice with the LD, and should I delay op on 17.5.08 to get a second opinion. The plastic surgeon they have given me only qualified 12 months ago so he has not shown me any after photos, only one during the op, which I didnt really want to see. Have looked on this site and there seems to be LD problems with nerves, tendons and chest tightness.I suffer from asthma so hope the chest tightness wont affect that.
Also I spoke to a lady who had a bilateral recon with LD and she had had each of her implants rejected 3 times, so 6 times in all. Also they slipped down and also went higher. Has anone else had these problems? She has been in and out of hospital having them replaced for 4 years!
Does anyone know if the DIEP uses more fat than you can grab. I have been trying to grab mine to see what size I’ll end up with. Really wanted a tummy tuck and may consider paying for liposuction later if I stick with the LD, as if I can get through this I can get through anything!
Have not had a pre op yet. If I was having the DIEP I think I need a CT scan too and no one to contact about this. The breast care nurse is on holiday till Thurs. Seems I may have to stick with the LD as all the odds are against me time wise. It has been going on for 5 months and now it is all rushed at the end.I have been keeping notes and now am on page 56!
.
Thanks everyone
Maxine
Bakers
So sorry.Thanks Bakers for your comments too. (Didnt get much sleep and am in a bit of a state.) You have made me feel alot better. Why did you have the recons separately, I am having mine both together. How long will the op take do you think? Can you answer any of my questions above.
Thanks Maxine xx
Hi Maxinebev It doesn’t look like you are getting as much info as you need from your team - as you can see my treatment moved very quickly as initially they though I only
needed a lumpectomy and rads but once I had my MRI the results showed a full mastectomy was required. This meant that i was making descisions very quickly - not because I was
being pressured by my specialist but becasue my mother had breast cancer and my sister has just finished a course of chemo after having a recurrance after only 3 years(she didn’t have chemo or rads after her mastectomy as she was told it wasn’t required.) so I wanted mine removed as soon as poss…plus this was the first op or stay in hospital I had ever had and I didn’t want to have to go back for a recon later.
What I am getting at is at every step or descision I had to make I was given info and a booklet to read - the one on reconstruction is called understanding Breast Reconstruction and was produced by cancerbackup - it shows all types of recon along with pictures, length of op whether you need a plastic surgeon or just a breast surgeon, the recovery time etc.
I have about a five inch scar on my back - but this was done so that it would go under my bra line, and at the front have an eliptical scar where my nipple was removed…my surgeon thought he could probably save it but again I didn’t to take any chances. They are the only scars - hence the reason why my cleavage looks so natural- not even sure how he managed to get the implant in!
the booklets were all given to me by either my breast care nurse or my oncology nurse and if yours isn’t there another one should be answering her calls - mine was off for a week during my
treatment but I was told to ring the same no and was dealt with by another one who was just as helpful. The tightness I talk about is like having a very tight bra on - but not being able to take it off for relief…it is just where the scar is healing and is made better with bio oil or a good skin softening cream. The numbness is getting better though I have been told that some feeling may
not come back - its very strange when you can feel an itch but scratching it makes no difference at all.
I also had fluid build up for a while and had to have it drained 3 times before it went but never felt a thing … thi is where the numbness comes in handy.
I am 51 so virtually the same age and do like to take carewith my appearance.
If you want any more info let me know but do get hold of the information booklets as they are very helpful - I have about 6 now on various subjects.
lots of love x
forgot to say my op for one took about 4 hours. x
Hi Maxinebev,
As Holly56 suggests information booklets are helpful. I have posted for you the link to BCC’s publication on Reconstruction, you may find it helpful.
breastcancercare.org.uk/content.php?page_id=663
You are welcome to phone the helpline and have a chat with the nurses here about your thoughts and concerns, I’m sure they will be able to help you. As it’s bank holiday the lines won’t be open again until Tuesday morning at 9.00 a.m. but please feel free to call after then. The number to ring is 0808 800 6000
Hope this helps.
Kind regards,
Jo, Facilitator
Hi Maxinebev
In answer to your question I had the recons separately as my surgeon would not operate on the two sides at the same time. The first op was 3.5hrs and the second one was 4 hrs she felt if she had done them together its along time. Every surgeon is different though. I must say each time I had three drains out of my back so would have probably had six if operated together, not sure how that would work. Its not easy going in second time but I knew that I could do it, even though I felt more upset. My history is I had BC in aug 06 had WLE, chemo FEC x 6 , rads, tamoxifen, on zoladex monthly injections, had affected side done first masec then recon then other side was preventative because of family history. I am 40 at the end of May. take care
bakers
hi i’ve just been readingthrough, i had both sides done at the one time ,i have never and never would feel under any pressure from any nurse doctor consultant surgeon!!! ,the operation took roughly 4.5 hours ,its been 8weeks,my surgeon from start to finish was amazing and extremely helpful,in explaining all the procedures, 18 months i went without breasts i was 29years old then and to be honest i didn’t miss them but this was the best decision ever to have this type of surgery the muscle and implant together, thereason why they would not do a full mastectomy,then reconstruction with radiotherapy has a massive effect on implants but really you now all in all at this time shouldbe understanding and feeling comfortable about the decisions and choice they give you i hope you get all the support you can and take care and remember this sounds harsh but your the most in important in all this
Thank you all for your comments. Saw the breast care nurse for an hour and a half yesterday and feel much better now about having the double mastectomy and LD recon with implants on both breasts. She explained the op to me which made me feel a lot better. She said the whole op could take 8 - 10 hours, but if I had the DIEP it would take up to 18 hours and is more risky. Also the time in hospital will be less. She had no before and after pics for me. Have all the leaflets now too.
My letters have come today. Have my pre op asst tomorrow and am being admitted 16.5.07 for op the next day.
I am a 36c now. What size bras should I buy for after the op. Will my back and front be really swollen, and for how long? What type of nightwear should I buy?
Thanks everyone.
Maxine xxx
Hi Maxinebev
im glad you have made your decision. I got told to wear support crop tops after the op, I got mine in matalan and they come in small, medium and large. I had to wear this for 6 weeks night and day. Primark, and BHS also done them. They are the stretchy type. My back has only ever been swollen with fluid but once that was taken away it was flat again. The front is probably swollen for a little while longer but as I said im still in stretchy crop tops at the moment.
Nightwear I wore pyjamas with buttons at the front or a loose top so its easy for you to get on and off…
good luck with your operation and let us know how you get on!
bakers
hi maxinebev,I had left mastectomy june 06 and then in sept o7 right mast and immediate recon,pedicle tram fla,before i was a b cup and now 8 months after op i am a d cup and i was only a size twelve so i have a flattish tummy,no major problems and slightly bigger boobs,i have yet to have nipples made but am so glad i had it done rather than implants,its 8 months now,i am still a little uncomfy inbetween stomach and boobs were they stretch your muscles up etc but i am glad i had it done,it looks good.
love debbi x
I had immediate DIEP recon after left mastectomy. Was told to get level 4 high impact sports bras in the same cup size but a chest size bigger, and wear day and night for 3 months. I am a 38B normally and now, nearly 10 weeks later, I still would not want to sleep in something as soft as a crop top. My BCN said it’s important to get sports bras and not just support bras as the seaming is different and they support the recon breast better. You can find photos of LD flap reconstruction on Google Images or just by searching for websites about breast reconstruction.
I wore the hospital gown until I was down to one drain each from breast and tummy, then wore strappy vest tops two sizes bigger than usual so I could just slip the straps down for examination, or to step out of them. All the best, Lyn xxx
Hi maxine,
I’m having LD op on the 16th may on my right breast. I chose the LD because it seemed the recovery time would be quicker. It was my choice tho! I wanted the tummy tuck op at first and was told by my PS that I wasn’t fat enough. But if I insisted he would refer me to the PS that did that. Had my Pre-op today and was given the chance to ask any questions, discuss any concerns etc. Also given all info for hospital stay. I just can’t wait to get it over with and get back to normal. Felt ok at the hospital then cried all the way home my poor fella he only has to look at me and I go to pieces.
Hope all goes well at yours
Take care Diane x
hi luckydi,ur ps told u u was not fat enough?how small r u?I was only a size 12 and not once,and i was seen by 2 ps was i not fat enough ,i barely had a bulge on my tummy but it made 2 good d cups from a b what i used to be.the treatment varies so much from place to place as i have discovered on here its any wonder people know what is the right thing to do.And the recovery time is quicker from the ld,if u have no probs,but i just think the implant thing has more chances of going wrong,less chance if u use ur own tissue etc,i just read so many things about normal boob jobs going wrong that i changed my mind and had tram flap 8 months ago,because originally i was havin implants but decided not to,as i think there is more chance ur body will reject them than it will ur own tissues
debbi x
also mu surgery took 12 hours???already had mastectomy on left a year before so just had right mastectomy and recon.
I was a 36dd before my op and bought a 38dd sports bra from Tesco but it was too small so bought 2 x 40dd’s from matalan - one black and one white and they were fine. I wore them during the
day but couldn’t wear them during night as I did feel restricted I have only just gone back to my normal bras this week (my op was 8th March).I had a check with my surgeon yesterday and asked a couple of questions as my boob is still quite hard where the muscle is - I was told that this is normal and that the finished product can take up to a year. He was very happy with my scars …and I must say so am I! in hostpital I wore PJ’s from Matalan as the ones from there were in thin cotton and buttoned up the front…again I bought them 2 sizes bigger. I was really
pleased with them as the beds were really warm and were covered in a rubber sheet which did make you sweat. You may however prefer to wear the hospital gowns with you having both sides done.
Back to wearing my posh strappy nighties now though.
From what I can tell everybody is different with the swelling etc and speaking to my breast nurse she said that you can’t actually do anything to stop fluid gathering…my back was drained 3 times but some don’t need it at all
Must say that you sound a lot better this week and I’m glad you had a long talk with your nurse
xxx.
Maxine,
My PS will only perform Tram if there is not a good enough blood supply for a Diep and considers it an inferior operation as it compromises muscle. Could it be that your PS is not as skilled or as confident in doing Diep? Could you see another surgeon. Where i live the Plastic surgeons work in twos to reduce the amount of time under anaesthetic. My
diep only took about 4 hours with 2 surgeons. Make sure you have all you options before you make such a big decision.