Post op problems

Hi JANE-ANN - I dont remember any difference in the nipple however i did get (and still have) numbness as you describe in my arm - the numbness may be due to your surgery as sometimes they damage a nerve during surgery - this is common and should have been described to you as a possible complication i believe? I can also remember it felt like someone had inserted a sausauge in my armpit which was just swelling beneath the surgery site and that did get better over time but made it hard to put my arm down by myside. I think you should speak to your Macmillan Nurse for reassurance they seem to have a knack for making you feel better! Good luck with everything and take care.... Jools

Hello, Jools,

Thanks or your reply - sorry not to have got back to you sooner. I like your description of the 'sausage'....mine feels more like a steel bar! The nipple seems a little better but is still very retracted. I think the swelling is so bad that it is just overwhelmed by the rest of the breast and pulled in. I'm hoping that the swelling will go down, but it just seems to be getting worse, particularly after exercises. I'm now 4 weeks post lymph node removal and 6 since the lumpectomy. It's only 3 weeks til I start radiotherapy and I feel I should be less swollen, so I've called the MacMillan nurse and am waiting for her to call me back, more for reassurance than anything else - I don't imagine there's any more she can do than what I'm doing already! I've reached the very-fed-up-and-rather-sorry-for-myself stage. Not good, I know. Am trying to stay positive!

All the best,
Jane-Ann

Hi Jane-Ann, I had lump and 29 glands removed in Dec2007 they also removed 29 glands and found cancer in 4 of them, i was told risk of numbness and swelling, i am still numb under my arm,part of my boob and down my arm, i have to look when i put on deoderant as i cant feel it, i also get strange feeling like an itch but cant feel myself scratching it, its all very strange, i am also swollen, i have spoke about it to nurses and told it will come back butcould take ages, that why you cant shave under that arm as you wouldnt feel if you cut youself. I cant comment on the nipple as i havnt had that, but still speak to a cancer nurse because as they say we are all different and best to be on the safe side. I have had problems with chemo but today i had my last, so only radio to go i start that at Guys 25th june for 5 weeks, i wish you all the best and hope everything goes well for you. Keep intouch i have found everyone so great on here and the chat room is good not all doom and gloom gets really funny sometimes and we all unserstand howeach of us feels. Sending hugs to you love carol 2 xx

Hi Jane-Ann,

Sounds a bit like you have "cording" in your arm pit. I took pics of mine and sent them to the Ameona life people (can be googled) they done an article about cording, I think it was july 07. They put the pic in the mag. This is (i think where the ligaments or tendon goes into a spasm) and go taught thus leaving a "rope like" sinue sticking out across the armpit. I had this after my op, it slowly went over a few months I think. Not sure how long it was, but just noticed one day that it had gone. As for the numbness, that sometimes goes sometimes stays. All depends on the nerve damage/repair. The whole of my arm was numb but now (3 years on) only part of the armpit is numb. no more shaving with a bic as too risky. Now have to use an electric razor. got a really nice narrow one in Argos, v cheap called Remmington lady shave. The head is only half inch wide.
I hope we have all managed to give you some idea and you feel better about the whole situation. You can always talk to the help line on here they are great.

I wish you all the very best with any further treatment.

Lol

Debbie and April

Hi, Carol,
thank you for yours - good grief, I can't imagine what having 29 out was like....I only had 12, of which 2 were affected and that's bad enough! Where were all the others??

You talk of a 'strange itch'. I have this feeling, usually after my exercises (ugh!) or at the end of the day when I'm tired, that feels as if there was something sharp in my breast, scratching me from inside. It seems to be getting a bit better now, so I assume it's just stitches being absorbed or some sort of healing going on, but it's horrible.

I am staring to feel a lot better, but I still have the feeling that I have a very tight underwired bra whose end has come through the material under my arm and is digging in to me! My lump was underneath, near the chest wall, so I suppose in pulling the remainder down and stitching the nipple has been stretched and inverted. I've seen the nurse who reassures me it will be better but may never come out completely.

But I've been very lucky....I don't have to have chemo. I start my radiotherapy the same day as you, but at Maidstone hospital, so I will be thinking of you.

All the best,
Jane-Ann

Hi Debbie and April,
thanks for your reply - it's really helpful and reassuring to get other people's take on things.

I think, now that a few weeks have passed, that the 'rope' I described is just the scar - it's a lot better now, since I've had physio on it and have managed to do my exercises regularly. I found a really good electric razor on the internet...it's tiny - cylindrical with a diameter across the head of about an inch and because it's round there are no sharp edges.

From other replies I've had, I think I've been very lucky....I don't have to have chemo and the cancer is apparantly the least aggressive.

I hope you continue to do well,
All the best,
Jane-Ann

Its all sounding good for you, I'm very pleased. Look after yourself and Do keep intouch.

Lol

Debbie and April xxxxx

Hi Jane-Ann, i will be thinking of you on 25th, i have to be there at 4pm so it will be a pig trying to get home from Guys in rush hour, but cant really complain its for the good. Hope it all goes well for you, do you know how many times you have to go.Hope to speak soon, sending many hugs, carol 2 xx

Hi Carol,
Sorry not to have got back to you sooner - I thought I'd set up the site here so that I get a message to my e-mail address which I check every day to say I if have a message here so that I remember to log in, but I guess I didn't!

How is your radio going? I have to have 15 sessions, followed by another 3 because my tumour was very close to the chest wall and they need to be sure nothing has travelled that way. I've had 3; so far so good. I have a bit of 'sunburn' soreness, but not too bad yet and I don't yet feel the expected tiredness. The worst bit is staying still with my arms over my head. The first time, which took longer as they were working out how to position me, one arm went completely dead! Also I have this almost uncontrollable urge to move while it's going on! Poor you, Guy's is a bit of a grim area to get to, but it's the very best, I'm sure, for doing the job. I have to get to Maidstone which is about 3/4 hour drive from here - a bit of a chunk out of the day by the time you've waited etc, but not an unpleasant trip.

Let me know how you're getting on, and I'll try to remember to check in here from time to time!

All the best,
Jane-Ann

Hi Jane-Ann, Radio is going ok, on Wednesday my appointment was supposed to be 4pm but at 9-12 in the morning (me thinking i would have a layin) i got a phone call from Guys asking if i could get there earlier at 12 it was a mad rush but i made it, and at least i didnt have to struggle in rush hour. Like you my arm went completely dead but apart from that it all went ok. They have managed to rearrange my appointments so most of them are earlier, which will be alot better, exept for next monday 7th when i have to go to St Thomas at 7-30 in the evening, but it wont be to bad as my husband can go with me that day. I am feeling tied but i think thats still from the chemo and travelling. At first they said 4 or 5 weeks but now it is only 3 so have my last 15th July. I cant wait till its all over its been along time since last Nov when i found the lump. Hope it continues to go well for you. Please keep me posted. I live near Dartford so its the same end of the country as you. Sending hugs Carol2

Hello Carol,

I just thought I'd ask you if you've come across a thing called a 'chillow'. My daughter found out about it and ordered me one on the internet. It's a sort of thin pillow that you fill with water and it stays cool - not too cold, either. I'm beginning to get the sunburn effect from the radio and I find it very comforting and soothing.

I have to take my hat off to you; I can't imagine what it must have been like to have had chemo and then to have to go through all this with the travelling you have to do. You must be exhausted. Are the staff at Guy's nice? I find everybody at Maidstone lovely except the people who actually do the radio process. I'm still very swollen from the surgery/lymph fluid and they seem very puzzled about it, but when I ask them if it's unusual they just sidestep and more or less ignore me. I know they're busy, but at the initial talk I had, they said just to ask if I had any concerns, yet they don't seem to want to know - it's almost as if I was swelling up just to spite them!

Like you, I can't wait for it all to be over so I can pick up my life again.

All the best, and look out for a chillow if you're feeling a bit burned!
Jane-Ann

Hello Jane-Ann, thanks for letting me know about the chillow, do you know where your daughter got it, it seems a good idea suppose could also be used for sunburn (not that we are allowed to get sunburn, but im going to Greece in september so it could happen). I agree the people who do the radio treatment dont seem that sociable, they just want to get you in and out as quick as possible. Did you know that we shouldnt use deodorant on the affected arm, i didnt and when i told a nurse that i was getting sore under the arm, she told me i shouldnt use it while having treatment. Hope your treatment is going well, i have 8 left then i have to have another CT scan as when i had the last one before chemo they saw something on the lung, they arnt that worried about it, doc said if its gone then it was cancer if its still there its a cyst, but its less than 1cm, after that a colonoscapy (prob spelt that wrong) as they saw a thickening on my colon, but once again not that worried as i have ibs and they think thats what it is. After that im off to greece for 4 weeks and really cant wait. My cousin lives at Lydd and she uses the Maidstone hos. Please keep intouch and let me know how you are getting on Take care, hugs Carol2

Hi Carole,

You can google the chillo . They are called chillo personal cooling systems.
Best wishes with the rest of your treatment and have a fantastic holiday.

lol

Debbie and April xxxxxx

Hi Carol,

Jessica found out about the chillo (thanks for the spelling, Debbie and April!) from a book she got on tips for helping those with cancer and she ordered it on the internet...As Debbie and April say, you could Google it.

I was told about the deodorant in the chat I had before my first session. They also told me to use only the Simple soap and /or body wash and only aqueous cream or E45 cream to soothe the skin.

I'm still very swollen from lymph fluid...a couple of pockets under my arm and towards the back. Do you have that as well? You really do seem to have been in the wars. I hope you have a really terrific holiday - I love Greece. Can't seem to persuade my husband to go anywhere, though.

Keep strong,
All the best,
Jane-Ann

Hi Jane-Ann, Hope you are OK and radio going ok. I have 5 more to go but am getting really tied with all the travelling, last night my appointment was 7-30pm at St Thomas thats alot more difficult to get to than Guys and we didnt get home till 10pm, tomorrow im back at Guys. I also use Simple body wash and Aqueous cream. How many have you got left to have? My arm and boob is still numb but at the same time it has a funny feeling that i cant really explain. I also love greece we have been to Zante 14 times and have alot of Greek friends and it will be good to see them again i have had lots of calls from them since i have been ill. Not long now for you and me then we can celebrate getting though this, hope you ok ,and i hear from you soon, hugs Carol2xxx

Hi Debbie, thanks for that, hope you will soon be feeling much better and back to yourself, we all miss you here. Im sending many good wishes and hugs to you and hope you will soon be well and back home love and hugs carol2xxxxxxxxxx

Hi Carol,
You really do seem to have a confusing schedule - it must be difficult, not just the travelling and finding your way round a different hospital but also having different staff and things....makes me realise I've been very lucky - even parking is easy at Maidstone. I finish next Friday because I have to have 3 'booster' shots of radio. I don't really understand the ins and outs, but possibly because I didn't have chemo and also because of the exact site of the tumour (very close to the chest wall), they feel this is necessary. It's a different technique, apparantly. I had to go and be marked up for it yesterday....my boob looks like a map at the moment! So my actual series of 15 stops same day as yours but I'll then go in for the extra 3.

I'll be celebrating when it's over - I haven't had nearly the long run you've had, but quite long enough! I'll be thinking of you on Wednesday and will raise a glass to us both on Friday...

All the best, and let me know how you get on,
Jane-Ann

Hi Jane-Ann, At last its nearly over,its been along time since November when i first felt the lump, this illness realy takes over your life doesnt it, all we seem to do is go to hospital for this or that. I cant wait for tomorrow when i walk out of St Thomas hos for hopefully the last time. I still have to see the oncologist at the local hospital in the next couple of weeks then the CT scan to check the spot on my lung has gone, ( they say if its gone then it was a cancer and if its still there its a cyst and nothing to worry about) also they saw a thickening on my colon and want to check that again, but i think (well i hope) its IBS. I am abit worried i know its nothing but at the same time dreading having it done incase i get more bad news, silly i know but i cant help it. Anyway im glad you will be finished by Friday, i will be thinking about you all week, we need to decide a time to have this drink on Friday then we can both raise a glass at the same time. I am really happy that it will be the end of a horrible time for us both. Has your arm and boob settled down yet, mine is still numb and abit swollen, but as long as we have got rid of the cancer i can put up with that. Really want to shout out loud WEVE DONE IT,ITS ALL GONE now to start having a life again. Hope we can still keep intouch, i have sent you a private message with my phone number incase you ever feel like a chat. Congratulations Jane-Ann for getting through this and beating the horrible thing. Hope to hear from you, many hugs, Carol2 xxxxxxxxxx

Well done to both carole and Jane-ann. I am so pleased that you are nearing the end of your treatments and are sounding so upbeat about it all.
Its not silly to worry about anything else that pops into view with regard to our bodies. After getting that initial diagnosis I will never let anything go unchecked. Dont care if i irritate the docs. It's our bodies and there is only us to keep a check on it, and keep it fit and well.
I will also raise a glass to you both at the end of the week. It's so nice to be able to celebrate something for a change.

lol and hugs to you both,

Debbie and April xxxxxxxxxxxxxxxxxxxxxxxxxxx

Great news from you both - I'm so happy for you! I too will be raising my glass to you on Friday ... after my own first chemo. It's so good to hear some success stories. All the best to you - love, Kate xxx

Thanyou Kate for your kind words, its so good to know that so many people are here for each other in the good times and the bad, this site has helped me so much when i have been feeling down. I am so glad its over but at the same time really worried that they will find something else on the scan, i am more worried now than i was at the beginning of treatment, but have been told that this is normal, i see onclogist next thursday when she will arrange date for ct scan, I just want to get it over with by the time i go to Greece in september. I hope every thing goes well for you with your chemo and that you will soon be walking out saying its gone i beat the bugger.I will be thinking of you on friday, do you know how many chemo you have to have and have you got to have radio. My thought are with you and wishing you a speedy recovery. Once again thankyou for your support, many hugs love carol2xx

Thankyou Debbie for your kind words and support, and for understanding how i feel now treatment has finished, i want to shout from the rooftops i beat it its all gone, but have this nagging fear that when they do the scan they will find something else, also i am not the person i used to be infact not sure who i am at the mo. I do feel that i am more tolerant and understanding, and dont worry about silly things now, life is to short to worry about trivial things. I also appreciate my family and friends more and the friends i have made on this site. Oh dear im rambling again. Its a strange but great feeling not to be spending all my life with travelling back and forth to hospitals taking temperatures ect. Rambling again. Hope everything continues to go well for you Debbie and thanks for all the support you have given me. You were really missed while in hospital, hope one day to meet you round the selsey area, love and hugs to you carol2xxx

Thank you, everybody, for all your good wishes. It was really strange this morning to hit Tesco instead of Maidstone Hospital! I have to say that the treatment I had there, the surroundings and the cheerful kindness of everybody in the oncology unit were just sonderful...even the parking was plentiful and cheap!

I'm sorry to have been so long in getting back to you all - I keep forgetting to check this site...it was nice to find 5 messages today! Could anybody tell my about their experiences with swelling? I asked my oncologist if anything ought to be done about the lymph fluid, as everything I've read and heard says lymphodema should be tackled early. I have nothing down my arm (yet?), but pockets of swelling behind the armpit, down my side and over my breast. It gets worse when I do my exercises (particularly that awful one of creeping my arm up the wall!) The oncologist said to wait until my 6 week check up on Sept 1st, but I worry that, because it's not very noticeable to anybody but me, she doesn't realise how swollen I am. Any comments?

Carol, I do hope your scan goes well - let me know when it is so I can think positive thoughts for you. I agree, I'm not the optomistic soul I used to be - can't help worrying about side effects and more bad news, but I think we just all have to be as positive as possible - partly because there's not much point in being anything else! I wish you LOTS of luck and hope you can go on that holiday with a clean bill of health.

All the best,
Jane-Ann

Hi Jane Ann,

I was carrying a "water bottle" around on my back, infact it turned out to 300ml. my surgeon said that it is the bodies own way of protecting the raw areas from each other. A bit like a blister. If you dont pop it, when the skin has healed underneath then it begins to reabsorb the fluid. I dont know if this is the same as armpit and arm fluid retention. But hopefully it will go down with time.
I have great faith in my onc and if she had said leave it i would have. So how do you feel about yours. You can also ask on the help line on here. There advice is totally impartial.
I am glad to hear that your team at maidstone were good and supportive. You could also call your macmillan nurse.
The exercises do get easier and before you know it, you will be back to doing all the things you are used to with that arm.
I wish you all the very best.

lol n hugs

Debbie and April xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

I too had the same operation at about the same time. My swelling did go down. Although it felt for a while that I was carrying a sausage under my arm. The exercises were really good and have helped to get full movement back into my arm. So I would recommend that you continue to do these.

The area under my arm is still numb. How long does it take for the feeling to return?

I had my BC in 2000, and had the same problems as everyone else has described on here, I still have numbness under my arm and in the top back muscle of my arm, I am sure the feeling will not return after all this time, I expect the nerve got damaged when I had the op, but I was told about this at the time, I had my armpit drained 17 times which probably did not help , who knows, I did do the exercises regularly and as many as I could manage a day, and then increased them as I got more mobile in that area, I am sure this helped in keeping fluid off the arm.
Steffy x

Many thanks everybody - you've put my mind at rest a bit. I do trust my oncologist, but sometimes I'm not sure they realise just how well we know our own bodies! I do the exercises religiously and I keep active round the house, so I'm hoping things will right themselves.

As to the numbness, I think some feeling comes back but there will always by patches.

How good it is to be able to talk to people and get their experiences - so much more valuable than any amount of reasearch!

All the best,
Jane-Ann

Hi,

I had my surgery (a lumpectomy and removal of 18 out of 20 lymph nodes from under my arm) in January and a follow up operation in February to take more breast tissue. I had severe swelling around the underarm scar which I was told was a seroma. It was drained by the doc three times - first time - half a pint, the second time - a third of a pint and the third time a - quarter of a pint! After about six weeks it settled down. I still have an area of numbness in my upper arm but it has improved dramatically. I think it is just of question of 'time will heal'. Boring but true! Good Luck.

KateG

Hi hope you are are feeling much better now treatment is over. I am ok exept for the nasty burn i have just under my neck bone, its really sore. I went to the onchologist last week and was told to keep putting the cream on it and keep out of the sun. Have you had any bad burns. I spoke about worrying about the spot on my lung and she has agreed to me having another CT scan to make sure everything is ok, that will be next Tuesday 5th Aug at 3-30, please think positive thoughts for me as i am abit nervous about it. Hope everything is ok with you. Will let you know how i get on, many hugs Carol2

I only came on this site yesterday, but have already found it so helpful. Thanks very much all of you for taking the time to write.

I was diagnosed with bi-lateral breast cancer at the end of October. The tumour on one side was large so they put me on chemotherapy first. This worked well, and I had few side effects. The tumour was reduced by 75%.

Next Monday (11th August) I have surgery for bi-lateral mastectomy!! They will take out all the lymph nodes on one side and 10 on the other. Later will have radiotherapy, but not for a while. So this has been a very very long journey for me.

I was grateful to read of all the comments about swelling and numbness and the difficulty at first with the exercising. These are the things that concern me. I keep wondering what I will be like this time next week! I have found it helpful to read your comments as I feel it equips me better for the immediate future. Were you in a lot of pain when you woke up from the operation, or was it more discomfort?

It is getting back the use of my arms that concerns me most. I understand some people, although they exercise, are still unable to raise their arms. I am praying about that!! Can't bear the thought!

I live fairly near lots of you - Margate. The surgeon at Margate Hospital is a woman - Miss Sharp - who has an excellent reputation. By this time next week I will have experienced her skills!

Hi Maureen Jean,

Further to your comments on worries about use of your arms post-surgery, yes, it will be difficult and uncomfortable at first but it is worth persevering with the stretching exercises. I had my post-op radiotherapy delayed because I couldn't raise my arm up sufficiently but I kept on (and on, and on!) doing the exercises and now I can stretch my arm in in straight line up above my head. The physios at my hospital held a class for post-op patients and emphasized the need to do these exercises daily FOREVER because of the risk of lymphoedema developing (even 10 years on from surgery) if you don't keep the arms moving.

As to post operative pain - I was worried and expecting to wake up in agony - I didn't. The surgeon explained that they inject a local anesthetic along the line of the incisions which dulls the pain until the healing process begins. And of course they also give you other pain-killing drugs. (Don't be shy to ask for something extra if you are suffering. It's all very well having a 'stiff-upper-lip' but come on - if it hurts ASK!)

ALL THE VERY BEST

KateG

Your arm will get its use back, dont worry about that. The most important thing is getting through with the op and treatment. It is a very long hard journey but at the end you will look back and think "was that really me".
As Kate says, they inject local and what with the interference with the nerves you prob wont have any pain. Be aware of the first time you touch your arm pit. It is very dead and feels like a lump of rubber. A most disconcerting feeling. But as with everything else you will get some feeling back in time and you also get used to the feelings.
I would like to wish you all the very best with your ops and treatments. Keep us informed how you are getting on when you feel up to it.

lol and ((((((((((((((((((HUGS))))))))))))))))

Debbie and April xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Hello Kate,
Many thanks for your reply....I guess you're right and I have to be patient. I have to say I'm confused about these lymph nodes. I was told there was cancer in the first 2 but 'the remaining 10 were clear'. From that I assumed that I had 12 all together and they had taken them all under that arm, but you talk of '18 of 20' and other people talk of 29...Very confusing. I still have lymph fluid (I assume) with , I had assumed nowhere to go, but if they've only taken 12, maybe there are more? A question for the Oncologist when I see her, I guess!

My scar is now very solid (it was softening up nicely before the radiotherapy as I was sort of kneading it daily but they told me not to while I was having the radio) - I guess I should go back to that now.

It's so helpful to get others' input and experience - many thanks to everybody.

Jane-Ann

Hi Jane Ann

I understand that the average person has around 20 lymph nodes under each arm. Some surgeons take what they call a 'sentinel node' to test for cancer spread and others routinely take more. However, do ask your surgeon exactly what's going on in your case.

I'm off on my holidays tomorrow (see my blog) but will check on this forum when I return.

All the best

KateG

Hi,

Just a foot note, my friend had 26 removed and all positive. That was 10 years ago. She is in fine fettle and looks great.

lol

Debbie and April xxxxxxxxxxxxxxxxxxxxxx