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Advice/support following Mx with LD Recon

15 REPLIES 15
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Re: Advice/support following Mx with LD Recon

Had mx and LD flap on 15th Feb, with axillary nodes removed, seroma drained 5 times now, they drained 200mls after just 4 days yesterday. It's a real pain and like the other posts it makes sleeping, driving, quite uncomfortable. Due to start chemo and hope this part is getting better soon. The reconstruction itself has swelling in the bottom part and has shrivelled at the top. I hope it will look better in time. Stretching the right arm fully is possible and I can put on clothes and wash my hair overhead with some restriction. I, too, hope that the pain will go and it will get easier. I still get really tired, too. As with the emotions, I am so busy trying to get repair myself physically, I shut my mind off, it's been just over 6 weeks since diagnosis and the full reality of it all has not hit me yet I think.
Hugs to all.xxxTina

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Re: Advice/support following Mx with LD Recon

Hi Ladies

Doesn't it help knowing you are not the only one going thru this?

Just need to check one thing with you, I did not start getting any seromas until 6 weeks post op & have had them drained 3 times now. It has started to fill up again but I am going to try to avoid having it drained to see if it will help to clear up. Most comments on this site refer to seromas within a few weeks of op has anyone else had them later down the line?

It's 9 weeks since my op but still feeling pain, not constantly but enough to cause sleep problems & stop me from doing things during the day. Not sure if everything coming back to life as another side effect of tamoxifen (but thats entirely another thread).

I know I need to be patient but it is hard.

I have my first appointment with physiotherapist on Monday so I am going armed with a list of questions to find out what I can & can't do now & in the future. I am beginning to worry about what effect this is going to have for the future.

Best wishes to all
Susan x

Lola
Member

Re: Advice/support following Mx with LD Recon

Hi electric landlady,
I notice you are posting on all the same topics as me, so it looks like we have alot in common! You sound like you are doing really well for only 3 weeks post op. When they told me it would take a long time to recover I don't think I fully appreciated what they meant, but it really does get so much better each week. Poor you with the seroma! I only had to have mine drained twice and then it settled down probably also around 4 weeks post op, so fingers crossed that you will be similar. The tightness and pain in the back really will get better gradually. My physio advised not to overdo it at first and try and give yourself plenty of time. It will help you recover quicker in the long term. I normally walk quite fast and that caused me pain so I had to slow my pace for a while, but now I can run again (I don;'t mean I do long distance running or anything, but I can comfortably run when I need to!).

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Re: Advice/support following Mx with LD Recon

Hi Susan and everyone else

I feel like I could have written bits of all your posts, especially Lola's! And I know what you mean about seeming to have got off lightly although your surgery was far more drastic than a lumpectomy. It's not like you can get your scars out to show people so I think few people realise how extensive a mx and LD flap really is.

I'm also getting so annoyed by the "you're really lucky, it hasn't spread and you don't need chemo so now you've had the surgery you must be completely fine" thing. I know people are trying to be positive but they couldn't be more wrong. (and of course i also know that I am really lucky for it not to be a lot lot worse).

It's been 3 weeks since my mx, LD and nipple recon. Although everything has gone really well, today i have a socking great seroma which they can't drain till tomorrow and am so fed up. I think maybe while you have physical pain and trauma to deal with, the emotional side of it stays (mostly) buried. I am fully expecting to be a snivelling mess for months and possibly years to come - how can you not be after all this?

Grrrrrr
One day at a time
xxx

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Re: Advice/support following Mx with LD Recon

Hi Susan & All,

I can't believe how many of us have had similar experiences! I had a lumpectomy in Nov 08 with a further op 2 weeks later to widen the margins. This meant I didn't need radio or chemo but 6 months later another area of dcis was found and I had a mastectomy in June 09!

Last October I had a further (elective) mastectomy and a bi lat LD flap recon. I was really worried about being disabled in any way afterwards but my surgeon said he had done the op on a pro golfer and she was OK. After 6 weeks I had full arm movement but still lots of discomfort.

After 2 to 3 months I was very depressed and felt I would never feel 'normal' again! (I also felt that although I knew it was good that it was caught early and I didn't need radio or chemo I also felt it was unfair that I had actually ended up with more radical surgery than some people with a small agressive tumour removed in a lumpectomy!) At that point I also didn't like the way the recon looked either. A GP friend told me it could take anything up to a year to feel completely well after this major surgery and the emotional roller coaster of a year before that.

Almost 5 months on after my op and I suddenly feel much better. I now love how I look (better in a bikini than even before the MX) and I improve in how I feel every week. So I think it is all worthwhile in the end - its just challenging getting there.

Its just good to know that the way we are all feeling is 'normal'

Anna

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Re: Advice/support following Mx with LD Recon

Hi Evertone

Thank you for your comments it always seems to help when you hear from some one else experiencing the same feelings. I should have come back to this site sooner.

I had some saline put in at my outpatient appointment last week so moving forward. My consultant advised will check the size ok before removing port as still slightly swollen. I was hoping port would be removed soon as my daughter is getting married in September & I wanted to be past having any further scars needing to heal, but htere we go!

Lola just wanted to say 'snap' I also had lumectomy & SNB in November, didn't think at the time would need another op. My BC nurse has said due to having two lots of general anaesthic this can effect how you feel & recovery process.

Thank you all again & best wishes to everyone.
Susan

Lola
Member

Re: Advice/support following Mx with LD Recon

Hi Everton babe,
Thanks for your good wishes. I now have a new nipple and have no after effects. I've posted about the experience on the "Are you happy with your nipple reconstruction" thread. xxx

Everton_babe
Member

Re: Advice/support following Mx with LD Recon

Hi Lola
I could have written your post, as you sum up perfectly my experience, tho I havnt had my recon yet. That people think you are 'better' and if you have been 'lucky' enough to have avoided chemo/rads, then whats wrong with you?
But its definately not that simple. The grief of my experience has just started to hit home now its been 5 months post-Dx.
I wish you well for the next part of your journey tomorrow.take care x

Lola
Member

Re: Advice/support following Mx with LD Recon

Dear Susan,
I have felt exactly like you and totally understand. I had my MX and LD recon in November 09. Like you I didn't need radiotherapy and chemo and have started Tamoxifen. During the early weeks of recovery I found everyone saying to me "you're so lucky the cancer hadn't spread" and I was saying that to people myself too, trying to put on a brave face. I almost felt guilty for feeling sorry for myself when so many people go through so much more. I felt very low and tearful at times. I also felt overwhelmed by it all. Life was normal and then suddenly one day in September I got my diagnosis and was then on a very fast conveyor of treatment - SNB and lumpectomy October and then MX and LD recon November. The first few weeks after the op were really tough with the drains, seroma, pain, weakness etc, but at that time I had lots of support and sympathy and just tried to get through it. I think it was then as I improved physically a bit that I suddenly started to take in all that had happened in such a short space of time. It was like delayed shock and that was when I started to feel worse in spirits. But it does improve so don't lose heart. My physical and mental wellbeing has improved very gradually over the weeks. At 7 weeks like you I still felt very down and as if I had a mountain to climb. I'm not saying I never feel down now, because I do, but much less often. It is still very early days for you so try not to be too hard on yourself.
I am having my nipple recon tomorrow. Next stage on the journey. x

dotchas
Member

Re: Advice/support following Mx with LD Recon

Hi,
Well done on going 12 years with your Mx,I wasn't brave enough and jumped for an immediate recon.
Its a hard decision to go for it now but its obviously on your mind and you deserve to have 2 boobs,if thats what you want.
Holding a ballroom hold wouldn't cause me any problems at all.And I can push and pull just as before.
For expert advice the best person to ask is a physio with experience of LD flaps as they know exactly what muscle power/movement you are risking losing .I was surprised when mine showed me the one movement I may have problems with but unfortunately I can't remember what it was.
Maybe ask your surgeon if you can speak to a physio for advice.
I think the LD flap has a more natural appearance than an expander implant.
Dot
xxx

RoadRunner
Member

Re: Advice/support following Mx with LD Recon

Hi Awadan

I had a delayed LD flap two weeks ago, mastectomy having been three years ago.

I was concerned about loss of strength as I am generally fit & active (I run & swim) so I asked around a lot beforehand. The concensus seems to be that it's not an operation to have if you are a rock climber, or a professional athlete, but for anyone else it should be OK. The muscle that is used is the one that helps if you are pulling yourself up by the arms (hence the rock climbing), but mostly people report no obvious loss of strength.

I am only two weeks on, and taking things very carefully, and doing my exercises to get movement back, but so far I am not aware of anything fundamentally lacking in my shoulder movement or ability, and am pleased by my recovery so far.

Guest user
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Re: Advice/support following Mx with LD Recon

Dot,
Thanks so much for sharing your experience. I'm 12 years post mx and really struggling with this decision. For a long time I have tried to convince myself that I didn't want reconstruction but whenever I am on holiday it's constantly on my mind. My surgeon has offered me a reconstruction using an expander implant and strattice (pig skin) but his preferred option is the LD, particularly because I've had radiotherapy and we are not sure how the muscle will react. My only worry is that I won't be able to dance afterwards and since the cancer diagnosis, dancing has become a huge part of my life. I'm wondering if I'll be able to sustain holding my right arm in the 'ballroom hold' for long enough to complete a dance (3 minutes or so) and also, for latin dances and rock and roll, whether I would have the strength to push against my partner's arm (e.g.: to spin round). I would be grateful if you can think of this and whether you would be able to do it.

Best wishes.
Awadan
X

dotchas
Member

Re: Advice/support following Mx with LD Recon

Hi awadan,
I am doing fine (jings its nearly 2 years ago!)
The only slight problem I have is a slight loss of range of movement when I pull my arm back or around my back.(like as if I was wiping my bum!)
Right from day 1 (OK maybe day 2 LOL!) I could lift my arm above my head and had no real problems.It began to feel weak later on,I think due to "reluctance to use" so I got Physio and that helped.
I don't know what movements you need for ballroom but I would think I would be fine.You will also be fitter than me to start with which would help tremendously.I was diagnosed after having 2 orthopaedic operations and had not regained my strength.
Good luck with the decision.Have you had a MX already or are you having an immed recon? Mine was immed and I have never regretted my decision.
My recon itself is great and I have just spent a fortnight in Lanzarote lazing in a tankini and no-one would know.
Love
Dot
xxx

Guest user
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Re: Advice/support following Mx with LD Recon

Dotchas
How are you now, a couple of years on? I'm really interested to know whether you have regained the full use of your arm after this op. I've been thinking about going for the LD flap but am a bit aprehensive as to whether I would still be as active afterwards. I do ballroom and latin dancing so the movement is very important to me.

Would love to hear more of your experience.

Awadan

x

dotchas
Member

Re: Advice/support following Mx with LD Recon

Susan,
As another LD flapper ,I could not read and not reply.
I had my op in July 2008 and remember feeling like you describe,feeling fine one minute with it all and then feeling so very low and weepy.I think you can expect the "feeling OK" times to begin to slowly overtake the bad times.But do remember its still very early days and you have been through a huge operation and a huge shock being told you have BC.Your poor head is all over the place and your thoughts are all mixed up.Its only natural.
Is there a Maggies centre or similar near you where you can pop in for a chat?
Love n hugs
Dot
xxx

Guest user
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Advice/support following Mx with LD Recon

Hi
I had right MX with LD recon 20th January so 7 weeks post op. I had read up on these forums before op so had a good idea what to expect post op & my BC nurse explained everything cleary also showing me pictures of what to expect.
I looked at recon straight after coming around from surgery & was ok with what I saw, I was aware still quite swollen. I did have an infection on my breast which cleared up quickly & have had to have back drained twice.

I do not need rads or chemo & have started tamoxifen.

I am not sure how to explain how I feel now, I have been quite tearful last few days one minute I can look at my breast & feel fine other times I feel overwhelmed by it all. I have been doing my exercises regularly & moverment is improving but I am just so tired of it all. I know I should use the fact that I do not need rads or chemo to help me through this but however positive I try to be is just not working at the mo. In fact I am completely fed up with the phrase 'be positive'

Is there anyone who has gone or is going through this, did you feel the same, will it pass?

This is the first time I have been on this site since op & I have read through some of the newer forums which has helped, perhaps I just missed the connection we all get from this site.

Just being on site & writing this has helped a bit. Sorry for the whinge & best wishes to everyone out there.

Susan