Effects of surgery, and more ...

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Hi folks

I’ve just registered, having been looking at your forums for a little while.

I have had a WLE and SLB for Invasive Lobular Carcinoma. The surgery was 20 Feb 2012, just over 3 weeks ago. All seemed to have gone well. I had the 2 week check up in out patients and was told the lymph glands were clear and I don’t need chemo. I have been referred for radiotherapy, having been told I will have 3 wks x 5 days treatment, plus a ‘boost’ as the margin was a bit skimpy towards the front but he took as much as he could, so this is just to cover that.

The wound, under the arm pit, has healed well but I have a swelling in my breast which is apparently seroma and also some fluid in my axilla. I have the usual tender skin under the arm, as result of severed nerves.

However, my main problem is pain down my arm, which I assume is ‘cording’. It is getting more painful and I now get pain down to my thumb. The Breast Care Nurse suggested painkillers but they don’t do much. I can only take Paracetamol, and I can’t take anti-inflammatory meds.

Has anyone had experience of this? What can be done to lessen the pain? It seems the more I exercise and stretch it, the worse it gets. So, I don’t know whether I should be stretching it less, or more!

All this on-going pain/discomfort is getting me down. I have also heard RT can make all this worse. Hence, I would like to try to get on top of it before starting the Rads.

Look forward to hearing from you. Cheers

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Hi ChocDrop
I have had the same as you WLE and SLB for ILC i had surgery on the 5th march and get my results the 22nd.Just hoping that they got clear margins and no spread to lymph nodes keeping my fingers crossed.My wounds have healed well but like you i have swelling in my breast,The one under my arm is a little sore to.I have also felt alot more tired and really down this week alot of my friend’s say i should be happy that the lump is gone but they don’t understand i now have to wait the longest 2 weeks of my life trying to stay positive and hoping that i get good results.Good luck with the rads big hugs
Becky xx

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Hello Zumba/ChocDrop, I hope you are both well this morning.I too had WLE & SLB for ILC had my first operation 24th Feb I had the results the following week and cancer had spread to the margin so needed a second operation 5th mar Finally got the all clear,so yes I was very scared the second op ( i had called my cancer a annoying bit of fluff and was going in the second time for a final spring clean.So please stay positive.My wounds are also healing nicely,but I am also getting more pain from the wound under my arm, do you think we are exercising to much? I think my radiotherapy, will be delayed because my wound was cut twice I think I am more worried about the radio than I thought I would be. Silly of me because the worst bit is over I keep telling myself.I too had a melt down yesterday and couldn’t stop crying glad to her it is not just me feeling like this. Keep in touch when having your radiotherapy perhaps we can support each other.
Bye for now

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Hello Minx50
Glad to hear that all margins are now clear for you,Good luck with your radiotherapy will keep you posted when i get my results next week.
xxx

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Hello all
I’m another one who had WLE and SNB. My op was June 2011 and my radiotherapy were 15 over 3 weeks. So I’m 9 months down the line (next appt next Thursday).

I still have some pain when I stretch. My arm is okay though, its all underarm. But not too bad these days. Scars are very nice, although a bit lumpy (I was glued, which has healed really well).

Rads were okay - i did feel very tired, and lacking in stamina over the autumn. And life was stressful because my dear old dad was going through his final illness, so I had to do much more rushing around than usual. I slept a lot extra, and often had a nap. Tried to listen to my body. But slowly but surely the energy came back. I’m still more easily floored by things like a cold, but again, its getting better.

I did have a skin problem in the crease under my breast about ten days after rads, but that too has healed slowly.

My strongest advice concerning rads, is to equip yourself with some really comfortable, supportive, but cotton bras, with no underwiring.

Now of course, I’m slowly winding myself up about my next mammo in May. Promising myself a long-haul holiday but don’t quite dare book yet.

So - all very survivable. And reassuring to meet a little group of you who are having rads but not chemo

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Hello araminta9,
Glad to hear you have recovered, and seem not to have to much discomfort, and good luck with your next mammogram.
Thanks for the advise regarding bra’s.I am wearing crop tops at the moment as I still have a fair bit of bruising and scares are still very tender.I have tried sports bra’s but they are still uncomfortable.I will certainly get some cotton bra’s.Did you use any creams?.

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Hi chocdrop and Zumba

I had WLE and SNB on 27th Feb. Like you I had a swelling around the original tumour site, and at times, usually 4am in the morning - I would convince myself the tumour had grown back to the size of a golf ball! ( 4am is NOT my best time for rational thoughts)

However, it was fluid and general trauma swelling around the site and it is generally settling down.

The arm stuff is plain freaky as I find myself hurting on the under-arm - a long way from the SNB incision. I also found that I couldn’t bear any weight - even a cup of tea. However, have continued with the physio and finding it gradually gets better. The pain feels like someone is scratching me with barbed wire.

My BCN advised that I stroke the area with a soft hankie in the direction toward my wrist - don’t know if it helps but it occupies me!

Good luck with the rads. I will be starting them soon once I have made my final decision to refuse chemo/herceptin. (i am borderline for chemo so have a choice. some choice eh?)

Good luck to you and hope it eases for you soon.

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Hi Chocdrop

I had an mx and lymph node sampling last year follwed by rads, no chemo either, and I went to an excellent session run by a Macmillan physio on cording and lymphoedema. I had the strange tightness and pricking sensation about half way up my upper arm on the uderside too, and the advice was to exercise and stretch it as much as possible. You’ll need to do that anyway for the rads as you’ll probably have your arms above your head. The rads were OK for me apart from feeling a little tired and one major blubbing session while lying on the table, but after checking they weren’t hurting me the lovely guy doing my session just said “one of those days eh love?” I started back with pilates as soon as I could and that helps too.

To help prevent lymphoedema they recommended massaging the affected arm with a non perfumed cream such as aqueous cream (but I used e45), starting at the top and working down the arm in small sections, but always sweeping the hand upwards at the end, to move any fluid up towards the remaining lymph nodes. I’ve had no problems with swelling and I did find that the massaging helped with the cording. It may be worth asking your BCN if there is anything similar in your area, this one was at Pendleside Hospice in Nelson, although I have to say going to a Hospice didn’t do much for my state of mind!

Good luck with it all, just had my first year check up and everything is OK.

xxxxx

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Hi Girls

It’s been good to read your posts. I don’t feel so ‘alone’ now.

I’ve been getting ‘low’ the past few days but I do suffer with depression anyway so not surprising really.

Zumba, I do hope you get good news on 22nd. Yes, it’s a difficult time. I think I was lucky in that I had a good feeling about the outcome for some reason. I was right in suspecting my lesion was cancer, somehow, and so it was reassuring my gut feeling was right for the second time. Anyway, not too long to wait now. Will be thinking of you and checking the posts on Thursday. Good luck

Sorry to hear you had to have further surgery, Minx. It must be a worry having to do it all again. However, you’ve done it now and I do hope your wound(s) heal well. I would think a second incision on your first could be more sore than the original. Hopefully it will feel better soon. My wound isn’t sore but the skin around is sensitive but I’ve assumed this is to do with the nerves being ‘assaulted’ during surgery, one way or another. I’m hoping it will largely settle down in time.

Yes, Minx, must keep in touch during our Rads. I have yet to get an appt from the Oncologist but am expecting it to come through soon. It’s over a week now since my follow-up appt in clinc, when he was going to refer me. I suspect, once I’ve seen the Onc, things will move pretty quickly. I hope so as I hate all this ‘hanging around’. I just want to get on with it and get it out of the way.

Regarding ‘melt down’, I’m often in floods of tears - to do with depression, how I handle frustrations etc. It’s just how I am! I make sure I’ve got a packet of tissue’s with me and people who know me are used to it!!! I’m just hoping I don’t get worse, what with getting tired once the RT starts, being on Tamoxifen and just being a bit fed up with my ‘lot’ in life. (I have other stresses too)

Thanks for your advice, Araminta. It’s good to hear how you have ‘come out the other end’ as it were.

Where have you girls got supportive but cotton bras from. I’ve looked, and asked, in M&S but the cotton bra I found wasn’t very supportive. Minx, I might try a cotton crop top but I would need a bra over the top!!! That would surely make me very hot - seeing as I feel the heat anyway.

Pesteringpixie (love your name!), it’s good to hear your swelling is settling down. I’m finding the swelling isn’t so sore now but it still seems the same size. I’m wondering if your ‘barbed wire’ feeling is what I describe as feeling ‘chaffed’, particularly when my arm rubs against my body? That seems to be getting a bit better. I think I might try your ‘hankie’ tip though. Thanks for that.

It’s the pain that goes down my arm and now down as far as my thumb that I’m concerned about. It’s getting worse although some times during the day it doesn’t seem quite so bad. I’ve read that radiotherapy, if aimed at axilla, can make this worse. I don’t know if my RT will involve axilla (does anyone have any idea regarding this?) but I don’t relish the idea of this ‘cording’ getting worse. Maybe I’ll have another chat with one of the BCN’s next week.

Anyway, looking forward to hearing how you are all getting on, dates for radiotherapy etc. Pesteringpixie, I’m sure you will come to the right decision for you but it must be such a tough thing to decide. I do hope you are getting a lot of support and appropriate information so you can make such a choice. Good luck and will wait to hear what you decide.

Cheers
J

Using E45 cream sounds good to me.

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Oops! Hi Foxy. Had read your post but somehow didn’t get to acknowledge you. My apologies.

Pleased to hear your check up was good!

Cheers
J

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Hi Chocdrop

No problem!

But to pick up on a questions you asked, if your lymph nodes were clear my understanding is that you won’t have rads on the axila. Like you my problem was not getting a clean margin on one of the areas of DCIS which was near the chest wall and that was why I had rads, and it was only to the chest area. On the other hand my mum had rads to the axila but she’d had clearance. If not knowing is adding to your stress do ask the BCN, she’ll have access to your notes and can tell you what’s been recommended.

Asda do an amazingly soft cotton sports bra for something ridiculous like £4 which I wore for the first couple of months, but I’m quite small so I can’t comment on how good the support is. But may be worth a look at that price.

Also it occured to me I was assuming you were given the BCC exercise pack “Getting fitter, feeling stronger”. If not try and get hold of it, not only are the exercises good the general info is very reassuring. I found doing the exercises to music helped as it can get quite boring.

Take care all of you. Been there and got the (slightly lopsided) t-shirt so I know how awful it can be, but you get through it.

xxxx

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Hi ladies
Nice to read all your post about your surgery etc bit in limbo at the mo till get date for chemo. I had my orginal surgery on the 24th feb mx with ld rec & implant with anc with 4 drains in total went home 5 days later doing ok had the last drain taken out on the 2nd march & dressing changed by the next day had to go back to hospital as it looked like i had an infection, cons came & saw me deff infection removed some pus like fluid then sent that to microbiology. Went to surgery next day but unfortunately had to have implant removed had to stay in hosp to have iv antibiotic while in hospital had result back to see if i was on right antis but unfortually was on the wrong ones to treat the infection. Went home on the 7th march with 1 drain still in, had result from surgery had 22 lymph nodes removed & 20 had cancer cells in them. i am strongly her2+ which i need chemo , rads , herceptin & tamox with having 20 nodes involved will need ct scan & bone scan. seen onc 14th march & see has put me forward for trial with a diff drug which goes along herceptin so they will keep a close eye on me which makes me feel a bit better

Big virtual hugs
Hope every body is ok

Tash xxx

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Hi there folks, this is the first time I have posted so here goes. I was diagnosed with a tubular cancer and had surgery (WLE and SLNB) on 21st Feb. I have had the results and there was a clear margin and clear lymph node, so really pleased that I won’t have to have chemo.
However, even after 4 weeks I still feel really sore, not the wounds themselves, although I am still very bruised, but under my armpit and at the back of my arm at the top where it meets my shoulder, nowhere near the wounds. My GP thinks the nerves are bruised and had prescribed me Gabapentin, which I have had before when I accidently severed a nerve in my wrist 10 years ago in a fall. I have only been taking it for a few days so it is a bit early ro say whether it will help as it has to build up. Is it usual to be so sore and bruised 4 weeks on? I realise that recovery is going to take a lot longer than I thought. I am a bit worried how I will get on with radiotherapy if I am this sore before I start.

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Hello Mrsgloc,like you I am worried about radiotherapy as I am still bruised and sore.I am only 14 days post op from my second, so perhaps I am expecting to much.I was told by both my surgeon and BCN that no radiotherapy would be started unless you are completely healed. Have you been doing the recommended exercises? were you given a pack from your BCN,they are quite gentle and you must listen to your own body. Hope you are feeling better today, keep in touch regards radiotheraphy.

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Hi MrsGlock
I had the operation (WLE and SLNBs) the day before you did. Like you, not needing chemmo but for Rads and Taxomifen, which I started almost 2 weeks ago.

How are you getting on with the Gabapentin? Are you finding it helpful? I’m hoping the Rads don’t cause more pain again, of course.

Yes, like you, I hadn’t bargained for all this. No-one actually tells you about feeling so sore. You expect to be sore after surgery but all this ‘extra’ bits, like nerve implications!!! I feel the nerve sensations are settling down now, allbeit slowly. I hope you soon feel some improvement.

Yes, I’m concerned how the radiotherapy will affect me. We won’t know till we are well into it, as everyone is so different. Let’s hope we fare well, eh?

I take it you don’t have a date to see Oncologist and starting Rads yet? I suspect you will be hearing soon, hopefully.

Take care everyone

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Hi MrsGlock
I had the operation (WLE and SLNBs) the day before you did. Like you, not needing chemmo but for Rads and Taxomifen, which I started almost 2 weeks ago.

How are you getting on with the Gabapentin? Are you finding it helpful? I’m hoping the Rads don’t cause more pain again, of course.

Yes, like you, I hadn’t bargained for all this. No-one actually tells you about feeling so sore. You expect to be sore after surgery but all this ‘extra’ bits, like nerve implications!!! I feel the nerve sensations are settling down now, allbeit slowly. I hope you soon feel some improvement.

Yes, I’m concerned how the radiotherapy will affect me. We won’t know till we are well into it, as everyone is so different. Let’s hope we fare well, eh?

I take it you don’t have a date to see Oncologist and starting Rads yet? I suspect you will be hearing soon, hopefully.

Take care everyone

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Thank you Minx59 and Chocdrop for yor posts. The Gabapentin is beginning to help now, taking 2 a day. Trying to cut down on the other pain relief to balance it out.
I will see the Oncologist on the 27th, so will find put more then. The surgeon has not yet prescribed me the hormone tablets as I had a Mirena coil which has since been removed and a bloodtest done to see if I’ve had the menopause or not. I’m 56 but am pretty sure I haven’t yet so we’ll see. I suppose they will get back to me about the hormone bit or do you think I should ask my BCN?

Its great to be able to talk to you girls while we are going through it. Lovely ladies who had to go through this years ago have lots of advice, but treatments change, so your advice is invaluable as it is up to date.

Do take care, Hope you get a date soon Chocdrop. As my surgeon said to me: “We are going to treat you and you WILL be well” so I hold on to that and you can too :slight_smile:

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Hi MrsGlock

Pleased to hear the Gabapentin is now kicking in. Must be a relief for you.

I’ve got appt to see Oncologist on Thurs, 22nd, so only another day to go before hearing the next steps. Just hoping there’s no reason to delay getting started. It’ll be a 50+ mile round trip each treatment but a decent road. Just hope the times are not in the middle of rush hours!!!

How reassuring it must be to have heard from your surgeon! “You will get better”.

Take care everyone,

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Hello just to say I have gone through the same thing and starting RADS next week. Nice to talk to the surgery/rad group and thanking God for no chemo.

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morning ladies :slight_smile:
can I ask what grade you were given ? as yours seems a bit like mine
janx