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bilateral reconstruction advice

16 REPLIES 16
0003SJN
Member

Re: bilateral reconstruction advice

Good Morning Ladies

Sorry to hear that you had your operation delayed Max. Before my operation I also had real problems with pain in my underarms on both sides and by the time I went for my operation I was convinced that my nodes were effected. When my histology came back my sentinel nodes were clear. You could have knocked me down with a feather. Maybe our minds just play tricks on us because we are so frightened!!!

I was given the go ahead to go swimming from last Friday so I'm going to try that today. I don't know how the chest muscles will hold out.... I just hope I don't drown. If I get into trouble you never know there maybe a gorgeous lifeguard there to save me!

Misha – Know what you mean about the feeling that you can’t breathe deeply. I’m hoping that the swimming will help to stop me feeling like someone has strapped an invisible rucksack to my front filled with bricks!

Well, I can’t put it off any longer, the pool awaits…It is a beautiful day here in Wales so at least that make me think better about going swimming.

Talk soon

Sarah-Jane

misha
Member

Re: bilateral reconstruction advice

Hi Maxinebev

Thanks for asking. My sentinel node biopsy showed lymph nodes clear on both sides - the first positive result I'd had !! A great relief as this meant no rads needed and immediate recon possible AND the deed is done.

I had bilateral mx on 23/5 with expander implants fitted - the plan is to have permanent silicon implants later. I went for this as minimum amount of surgery required to other parts of the body even though at least 2 ops to breasts. I was in hospital 6 days. The expander implants have been fully filled (this is the way my surgeon does things...). To be honest I feel like my chest has been trampled by a herd of elephants and one of them has stayed behind. It is very hard to breathe freely and I haven't left home since coming back from hospital as I live in a 2nd floor flat and haven't been able to face the 30 step staircase to freedom yet. Might try that tomorrow as I'm beginning to feel like a recluse.

I have to go to clinic on Thursday to have dressings checked and hopefully get pathology results to find out if chemo / hormone therapy etc are needed.

Sorry, to hear about your delayed op - the waiting is so hard. All the best. There was a lady I met in hospital who had had a DIEP recon last year and was in for a second mx and immediate LD flap recon. She was very pleased with the early result and was bouncing out of bed after a few days and went home with drains in. Of course I wish her well but I did feel a wimp - I was being sick as a dog for the first 24 hours and unable to walk to the bathroom unaided until day 3 post op.

We're all different I guess.

Best Wishes
Misha

maxinebev
Member

Re: bilateral reconstruction advice

hi Misha and everyone

Agreed to have double mastectomy and immediate bilateral recon ld with implants. Op scheduled 17.5.08. Caught a chest infection week before and they wouldnt do op as too poorly. Still feel rough after steroid tablets and 3 lots of anti biotics. Found out from phoning breast care nurse last week that have high grade DCIS in my right boob which means it can spread. Really worried as both underarms have been hurting all year. Havent seen a consultant since 21.4.08. Worried it has spread and that I may need radio and that recon may be ruined.Nurse just tells me not to worry. Has any one else experience tenderness under arms?

Misha have you had results of centinal node biopsy?

Max xx

0003SJN
Member

Re: bilateral reconstruction advice

Hi MaxineBev

I am 42 years old and was first diagnosed on 8th April 2008 following a routine mammogram at the "High Risk Clinic" I was diagnosed with Grade 1 Invasive Lobular Carcinoma. My knee jerk reaction when hearing the news was just to point to my breasts and say "take it all away!" My consultant was concerned because although they had seen the site on the mammogram, had it confirmed by biopsy he couldn't see it on Ultrasound and couldn't see how large the tumour was. I was therefore booked into have a MRI. which also proved to be inconclusive but showed 3 sites of enhancement in my left breast.

When it came to making my treatment decision, I had a confirmed tumour in my left breast, maybe 3 more in my right and a High Risk family history so I opted for a "bilateral subcutaneous mastectomy, skin and nipple sparring with immediate reconstruction" and my consultant didn't disagree... After reading comments, I think when it came down to it, I was given a choice... but I have the feeling in the back of my mind that I made the decision which my consultant wanted me to make and would probably not have let me make the wrong one... but it was my decision.!

I had my surgery on 8th April and apparently my words when I came out when someone asked me how I felt when I came out of surgery that I felt like my chest had been trampled by a herd of elephants. When I saw the consultant in recovery and told me that they were happy with the surgery and initial feeling was that it hadn't spread to my lymph nodes and they had managed to save my nipples.

I've been returning to the hospital for regular "pumping up" of my implants as had temporary fillable type to stretch the muscles via ports on my sides . Didn't know anything about reconstruction but know more now... My breasts are now virtually back to the 34DD I was before the op, although they are a different shape, flatter and higher. I would recommend you get a good bra for post op as this has been my biggest friend...

On Friday I was discharged from the post mastectomy clinic and given an appointment for pre-surgery check for the replacement of my temporary implants with permanent bags 1st week of September. I was offered the tummy fat replacement option but don't want more scars.... so will probably go for silicone implants, after all they are good enough for all the film stars..

Hope all goes well with your op, thinking about you.

Sarah-Jane

archie
Member

Re: bilateral reconstruction advice

Misha
I had bilateral mast with Immediate LD recon 7 days ago. The implants used are permanent. I had mine done at the same time because i didnt want 2 general anaesthetics, its the anaesthetic i find scarey not the actual op.

rather sore at moment, but still have the 2 back drains in and im sure it will be more comfortable once they are out. I dont regret having it done all together.

Its reassuring reading Karens message as she is further down the line to me. Speak to your breast nurse if you are still unsure. Hope all goes well for you
Debi

trudymerseysid
Member

Re: bilateral reconstruction advice

hi maxibev
i had a double mastectomy October last year it was a bilateral using my tummy and if you do have stretch marks they will be transferred. i have not been comfortable since i had the op and have got to go back because the right one needs to be adjusted. i feel like i am permanently pregnant and under my arms are also sore all the time. in April i had to have a scan on the scar tissue on may left breast and under my arm because they thought there was something going on but it was ok then in may i found three lumps under my right arm and had to have needle biopsy's.I am really depressed. i thought that once i had the op i could forget about the cancer and get on will my life am constantly reminded 24/7. my advise to you is to go for any other offered.is there anybody out there who has had the same problems as me?

misha
Member

Re: bilateral reconstruction advice

Karen or anyone else...

With implants used in LD flap operation - are these permanent or are temporary expander implants used in the same way as for implants only? I'm trying to work out if immediate LD flap recon can be done in the single op (assuming no complications).

Hope you can help

Thanks
Misha

kaz42
Member

Re: bilateral reconstruction advice

Hi Maxinebev and Misha,

I have had no problems at all with my implants, everything has settle down really well with no complications, I may be having them changed purely because I would like to go back to a C cup - the size I was pre cancer.

I did have the both sides done at the same time, the worst part about it was trying to get comfortable when sleeping, what with four drains in and obviously alittle sore. As far as the strength in my back I can't say I noticed much difference after the op. I'm now nearly 12 months post op and back to doing my kick boxing which involves press ups during the warm up. The only wierd thing is when I press a certain part of my new breast it feels as if someone is prodding me in the back, aparently the brain still thinks the muscle is in your back, but it is a minor thing and doesn't cause me any problems.

Hope the above is useful ladies, like I said before I would go through the recon all over again to feel how I do now.

Keep in touch, hope things go as well for you as they have for me

Take care
Karen
xxxxxxxxxx

misha
Member

Re: bilateral reconstruction advice

Maxine,

I found a lump in my right breast which turned out to be a tumour and I was hoping for a lumpectomy (that was my last optimistic thought..). After further tests and MRI scan they found I also had DCIS in several places in the right side and then some other pre cancer (not sure what?) in the left side so have recommended the bilateral mx.

I never seem to get the same answer twice re radiotherapy. First I was told immediate recon could not be done until after any radiotherapy, them that implants would be ok, then then implants could be damaged by radiotherapy! Also the surgeon has told me not to have LD flap until after radiotherapy to prevent damaging the skin. I agreed to have the lymph nodes checked on both sides to be sure about whether radiotherapy would be required and cut down on the options available. At least having the Sentinel Node Biopsy gave me the experience of going into hospital and a general anaesthetic - all of which were new to me and so frightening.

If your cancer is all at DCIS stage then perhaps risk of lymph being affected is lower, but certainly worth asking again. I hate the way the health professionals dismiss some things when we're really worried about them. My team seem very laid back about timescales - "a week here or there won't affect the final outcome" but I agree it is worrying to think the cancer is still in there and developing further,

Best Wishes
Alison

maxinebev
Member

Re: bilateral reconstruction advice

Misha

Saw plastic surgeon on Thurs. Decided on LD at last minute as not enough fat for double DIEP recon. AM having them done both together. Havent had sentinel node biopsy. My underarms have been hurting all year, but no one seems to be bothered. As I was diagnosed with DCIS, they dont seems to think I need my lymph checking as it doesnt have the ability to spread until it is high grade. Mine was intermediate on the one boob in FEB, so it could be high by now. What happens if I have the LD with implants and I then need my lymph checking and radio? What type of cancer did you have? Thankyou so much

Maxine

misha
Member

Re: bilateral reconstruction advice

Karen,

Did you have LD flap recon on both sides in the same op? How did this affect strength in your back?

I have to have a bilateral mastectomy and want immediate recon if poss. I've been looking at expander implants OR LD flap with implant - thought TRAM too complex and I think I'm too thin to create 2 new breasts. The type/timing of recon will depend on whether I need radiotherapy - I has sentinel node biopsy to see if lymph affected but don't have results yet.

I feel I want to minimise the number of times I need surgery but worry about the recovery times of a complex single surgery.

Any thoughts.

Misha

maxinebev
Member

Re: bilateral reconstruction advice

Karen

Thanks so much for your help. Am seeing the plastic surgeon today so we'll see if he wants me to have the DIEP or LD and hopefully how long it will take.I spoke to a lovely lady last night from the peer support group. She had an LD recon 4 years ago and has been having the implants replaced constantly. She will be having 3 changes of implants in the left and 3 in the right over the last 4 years.It sounded horrendous. Have you had any problems with your implants?

I have been waiting 5 months but still have both my breasts and the DCIS is still growing inside me. That is the worry.

Thanks so much

maxine

kaz42
Member

Re: bilateral reconstruction advice

Hi Maxinebev,

I had a bilateral mastectomy in August 06, but had to wait a very long 9 months to have the reconstruction as they were not sure at the time whether or not I would need chemo or rads. Luckily for me I didn't need either.

As I am a size 10 I didn't have enough fat on my stomach for the diep method, so I had the bilateral recon using the ld method where they take skin and muscle from the back, and with an implant reconstruct the two breasts.

I was in hosp for 6 days with four drains in and have to say it was more uncomfortable than painful. I was on morphine and a drip for the first 24 hours, after which I was coping with strong pain killers.

I was able to drive after approx 6 weeks and back at work after approx 10 weeks.

I am so happy with the results, I have recently had the nipples reconstructed and am due to see the plastice surgeon next month to discuss the tatoo. I have also been advised that I can go bigger if I wish as I am smaller than before the cancer and would so love to be back to the size I was before.

My experiences of the recon is all good and would recommend having it done, knowing how much better I feel in myself now - my confidence has shot through the roof.

I hope my experience has helped you in some way.

Stay strong and take care

Karen
xx

maxinebev
Member

Re: bilateral reconstruction advice

Thanx 1966ruby. I really do hope so. Am getting no sleep at night as I can't stop worrying about it all and am unable to switch off as this has been going on for 5 months now and still have no date for my op. Both my under arms have been hurting/aching all year (presumably my lymph nodes), but my doctor and the consultants just shrug it off , which is really worrying me. Also I have had an intermittent ache in my left arm all year as well which I feel stupid to mention.

Maxine

1966ruby
Member

Re: bilateral reconstruction advice

Oh Maxinebev
You have been through a lot. There are a lot of ladies on here who have had this. You will get a lot of responses from real people very soon... you just wait and see!
Lisa x

ForumMember
Member

Re: bilateral reconstruction advice

Hi Maxinebev

Welcome to the forums. I am posting a link to a BCC publication about breast reconstruction which you may find helpful to read whilst you await replies from your fellow forum users, you can read it via the following link:

http://www.breastcancercare.org.uk/docs/breast_reconstruction_dec06_web_0.pdf

You are also welcome to call our confidential helpline for further support and information on 0808 800 6000, it's open Mon-Fri 9am-5pm and Sat 9am-2pm.

Best wishes
Lucy

maxinebev
Member

bilateral reconstruction advice

AWAITING DOUBLE MASTECTOMY AFTER AN AWFUL 5 MONTHS. I FIRST WENT TO HOSPITAL ON 3.12.07. TOLD I HAD 2 SOLID LUMPS AND ALSO SEVERAL CLUSTERS OF MICROCALCIFICATION IN MY RIGHT BREAST. THEY PIERCED MY ARTERY WHILST TRYING TO TAKE BIOPSIES OF THE TWO LUMPS AND SAID THIS CAN HAPPEN. IT TOOK AN HOUR TO STEM THE BLEEDING.SUBSEQUENTLY HAD TERRIBLE BRUISING (MY WHOLE BOOB WAS BLACK AND BLUE FOR WEEKS AND WEEKS) AND A HAEMMATOMA. HAD WIDE LOCAL EXCISION ON 25.1.08. THEY COULD ONLY PIN POINT THE ONE LUMP BEFORE THE OP INSTEAD OF THEM BOTH. I WAS SURE THE OTHER LUMP WAS HIDDEN IN THE HAEMATOMMA. I WAS TOLD ON 13.2.08 THAT I HAD INTERMEDIATE DCIS AND NOT INVASIVE CANCER AND THEY JUST NEEDED TO DO ANOTHER SMALL OP TO GET 2 EDGES CLEAR AND NO OTHER TREATMENT WOULD BE NECESSARY. I SAID THE OP HADN'T GONE TO PLAN AS THEY ONLY LOCALISED ONE LUMP INSTEAD OF THE TWO BEFORE THE OP, BUT THEY WERE ADAMANT THEY HAD GOT IT ALL OUT. WOULDNT DO A MAMMOGRAM OR ULTRA SOUND TO CONFIRM AS THEY SAID ALL THEY WOULD SEE WOULD BE SCAR TISSUE.

HAD 2ND OPINION END OF MARCH.THEY TOLD ME NOT TO WORRY ABOUT THE HIDDEN LUMP AS I NEEDED A MASTECTOMY ON RIGHT BREAST.THEY COULD ALSO SEE SOMETHING ABNORMAL ON MY LEFT BREAST. FOUND OUT LAST WEEK I NOW NEED A DOUBLE MASTECTOMY. GOOD JOB I HAD THE SECOND OPINION.

AM A 36C AND SIZE 12 -14.I WAS PROMISED A DIEP RECON EARLIER, BUT NOW NOT SURE IF THERE WILL BE ENOUGH FAT TO MAKE 2 NEW BOOBS.AM NOT SEEING PLASTIC SURGEON AGAIN UNTIL LATER THIS WEEK, BUT BREAST SURGEON SAYS I MAY NEED TO HAVE AN LD RECON AS IT IS QUICKER, WILL GIVE ME A BIGGER SIZE AND HAS A HIGHER SUCCESS RATE. HAS ANYONE HAD A BILATERAL DIEP RECON SIZED 36C PLEASE? WHAT SIZE WERE THEY AFTER THE RECONSTRUCTION PLEASE?

MAXINEBEV