Hi everyone. I am new to this forum and am finding all the advice really helpful. I had no idea prior to my own diagnosis, just how many women are affected by this disease. I had neo adjuvant chemotherapy followed by mastectomy and lymph node clearance back in November. All ok now apart from mobility issues which seem to be common and no radiotherapy needed. I am soon due to go on my first foreign holiday, to the South of France. A fairly short flight but I am worried about lymphodaema which I have thankfully managed to avoid so far. Does anyone know if it is advisable to wear a compression sleeve or do anything in particular to guard against it please?
I had a full clearance under my right arm 14 August and it been 3 days now that my hand and arm have been very uncomfortable and swollen. I’ve tried ringing the Lymphoedema clinic 3times this afternoon but no one has rung me back. I’m worried that it’s going to get worse by Monday
Good the forum is helping. The numbness is very common after node removal, even if only one out, so if she has had more out then she will be numb for sure, and for a while afterwards. Weird feeling trying to wash your armpit and not able to feel what you are doing. Hopefully she will have been given advice re excercises to do to regain mobility? Best wishes to her and to you. Lots of other threads to read if she goes onto further treatment. xxx
Hi Sarah, what a special club were in! Pleased the surgery went well. I had a full clearance, too, and I certainly found the trickling water sensation weird. It's the fluid looking for another route! Please do keep doing your exercises, you'll need full movement fir any CT scans and radiation. I'm 11 weeks post op and I still feel as though I have a book stuck under my arm pit. Just funny, not painful. You'll find we're all different, and some very good stories to tell. Good luck. X
Hi Sarosh, had my WLE and total excision 6 weeks ago. Would like to help you, but not too sure what you need.
If you are worried about immune system after LNE then you have lots of others around your body . My consultant and BC nurse told me to wear gloves for gardening and housework, especially with chemo.
You need to do exercises to ensure that any fluid build up is dispersed otherwise you will get Lymphodema - not good! Once the lymph nodes have gone, your body has to find a way of dispersing fluid. This may feel a little peculiar at first but settles down. I still have some pain under the arm. This will always feel numb as the nerve has been severed to get to the glands. Hope this helps.
Good news is,you are cancer free!! Just belt and braces now to get you fit for the future. Well done you. X
Sorry, Donna, just re read your post. Mine came out on day 5 as the drain registered less than 30mls in 24 hours. However, I was told that it could only stay in for a total of 7 days anyway because of the healing process. Not sure why you have had yours in so long. Have you had problems?
Hi Donna, I had a really lovely district nurse who had me doing deep breathing. When I was centred she clipped the stitches , then very firmly pulled the drain out. I did not find it painful, rather a sort of sliding sensation. I chose to lay down for it and made sure I was very comfortable. I felt this would help her slide it out sideways , rather than pull down over . Anyway, worked for me. Hope this is reassuring for you. So much freedom when it's out!😄
I didnt find it at all painful and didnt realise the nurse had already done it !..so dont worry too much !
I had lumpectomy and axillary node clearance two weeks ago today (drain still in). I get the results of surgery tomorrow but scans only showed up one raised node. My thoughts on it are Im glad that they removed all nodes. I dont want any little rogue cells sitting dormant in any of my other nodes. My body will learn to drain the fluid in that area some other way and I will continue to do my exercises and look after my arm to decrease the chance of lymphodema.
The drain is also being removed tomorrow - I have been told its sore - anyone verify this?
I wasnt given the option of radiotherapy rather than getting my lymph node clearance I was told this was what NICE guideline presently recommend. I had had a choice Im notsure which way I would have gone but if they were going to give me radiotherapy to the armpit anyway i would have probably opted for that but it they said it was either or well that would be a tougher decision as I would have t consider the implications of getting more radiation zapping my body versus the the difficulties with the LNC op. Ive heard that radiotherapy shrivels up the lymph nodes anyway so they dont function afterwards but not sure if this is true.. dont envy you in your decision.. I am presently grieving for my Lymph nodes (I know it sounds a bit dramatic)especially as they took out so many which were healthy but at the end of the day it was my decision as did not want to risk leaving lymph nodes in when they may have cancer in them and was told this was the only safe option. hoping you manage to make a decision soon as must be really hard for you x
sounds really difficult ! sorry to hear you have to have chemo and hoping it isnt too bad for you. I am still hoping Chemo wont be recommended to me but if it is I suppose I will just have to get on with it. Even the thought of taking letrozole for 5 years worries me as I always seem to suffer a lot of side effects with any medication. I know for certain I will need radiotherapy,not sure if this will be as well as the chemo or an either or thing. Getting radiotherapy scares me too and wandering about the effect of that on my skin , breast and body..Ive heard it can discolour your skin and leave scars..and make you feel very tired but a small price to pay if I get rid of the cancer..Feels like a bit of a time bomb to me as Im always wandering if it will come back but trying to put that thought out of my head and concentrate on eating well and doing my exercises to give myself the best chance of recovery. Take care x
Just jumping in on this thread as I'm currently having to decide whether to have full clearance or radiotherapy to my armpit.
I had 2.3cm tumour removed (lumpectomy), clear margins, and three lymph nodes removed, and they found a 2.5mm bit of cancer in one of them.
Frustratingly, my surgeon, oncologist and radiologist are all offering me different and conflicting advice. They've also talked to me about POSNOC, although I won't be part of the trial.
I'm assured that the outcome (ie risk of cancer returning) is the same for surgery or radiotherapy. Ahhhh, I never knew cancer came with so many choices!!!
Anyway, they're discussing my case at MDT on Monday and I see my consultant again that afternoon. Will then need to make a decision. I'm already due to have chemotherpay, radiotherapy and tamoxifen, and I just want to get on with it, I'm finding this really frustrating. Rant over, apologies!
Hope you're all making good recoveries. I've been doing the lymphoedema exercises too, just in case!
Hi Elaine sorry to hear your feeling so low ..you are not on your own with that.its a bit of a roller coaster ride. I was feeling happy yesterday at being told only one of my lymph nodes had cancer in it after my axillary node clearance op.Now im feeling angry because so many other healthy lymph nodes were taken out and I feel Im really upset about that and been feeling tired and weepy and my arm is numb in places and very tight under te arm and sore so ive been feeling a bit down too. but really kicking myself as should be happy as Im really lucky that it turned out the cancer is only in one lymph node. just think the constant worry about waiting for results and not knowing whats going to happen next wears you out. also a red mark appeared on my breast which had been operated on and that caused me worry even though they said it was nothing to do with the cancer.hopefully we will both be feelin better soon Take care x
Hi RachelElizbeth I wasnt given any other option than lymph node clearance as they said they would not know for sure how many lymph nodes were infected till they took them out. and as they already knew I had cancer in one that this was the recommended treatment. found out the results from op on wed . they discovered that the only lymph node infected was the one I already knew about before the op, its annoying I had so many healthy lymph nodes taken out.but apparently that is the only way they can find out for sure whether there is any cancer in them. I count myself as lucky though as it may have been all my lymph nodes were infected. . they also got a clear margin around the lump they took out which is good. now waiting for an appointment with the oncologist regarding the pros and cons of treatments to be considered as part of my careplan my care plan. I am hoping the oncologist doesnt recommmend chemo . Im contnuing to be very sore under my arm and very tight so pain ful doing the eercises but persisting and doing them regularly .also have a lot of numbness and have been told to rub the numb areas with materials of different textures in the hope this may help.. so kept pretty busy doing all this.. dont know when I will be able to go back to work but feel lie I need to stop off to give myself time to do all this stuff. also still feeling very tired. have other whove had this op went back to work within a short timespan or have they taken a while .just wandering what can be expected of me. ??
thankyou for your input. sorry to hear you are having a difficult time with having a seroma under your arm. I am very numb under mine at moment and also have some numbness on the back area . I am hoping I get some feeling back as it feels very strange .I am a little bit swollen but breast nurse just said to keep an eye on it. I wasnt told to put any aqueous cream on. The physiotherapist told me I could put some olive oil on my poorly arm but I did not put that on my breast incase it made my dressing loose. I will be going back to hospital for my results on wednesday and will be very fearful and hoping that its good news. I already know they found cancer in one lymph node and Im hoping there are not other lymph nodes infected.when they did the op they took all level 1 and level 2 lymph nodes out but left the third level in as they said they did not 'feel' abnormal.So hopefully they are not. I have been putting Wednesday's visit to the hospital to the back of my mind and just concentrating on trying to get well. Im dong the execises regularly as told to do and feel like I am progressing .some are easier than others. Havnt managed to raise my arm right up yet and yes it feels tight. I am wandering once the dressing from under my arm comes of it might be easier as it feels its getting tugged when exercising .
Im hoping things go well for you and your seroma goes down soon. it must be very uncomfortable.Ive been feeling very tired and resting a lot. Please let me know how you are, will be good to hear from you x
i hope you don't mind me dropping you a line.
It sounds like you have gone through the same as me, I had lumpectomy back in December and 3 nodes removed. I never expected them to find cells in 2 of my 3 nodes!! I like you opted for the Axillary clearance and had that last week. I have also got a large seri a under my arm pit, my surgeon does not want to drain as she says it increases infection and will just keep coming back. I am trying to put up with it for now and see what happens, I have to go back for my results on the 23rd Feb. Sometimes the exercises are tighter than other days do you find that. I have been using the aqueous cream the nurses recommend.
I do do hope you get good news, I will keep everything crossed for you. Please let me no how it goes, it is good to share, the rest of the world does not understand.
thanks for the advice Emma..Im recovering well from the op and doing regular exercises for my arm which I can not raise very high at all at moment . Im wandering if you could recommend a moisterisor which would be suitable to use on my arm as I know you have to be careful of what you put on it. i go back to the hospital on wed 15th of feb so will get the results of the tests they would have done after my surgery on that day.. that will be a difficult day as always hard going to find out results. ive been putting it out of my head and concentrating on getting myself well..hoping you re ok x
Hi A Fead
My surgeon has told me as I have def got cancer in one lymph node they need to take the rest of them out as they will need to be examined before they know if they are infected. She has said just because they look normal doesnt mean they are . Ive agreed reluctantly to have mine removed as dont want to take the chance of having the cancer spread by unknowingly leaving cancerous lymph nodes inside me. hope whatever you decide works well .good luck x
I was told they would only do a Sentinel biopsy if there had been no cancer showing up in the core biopsy of the lymph nodes. sounds like you were given different information x
I really appreciate your reply but I have now already agreed to the surgery and will have this on Tuesday 31st. not happy but did not want to delay my surgery any longer .talked with consultant about the trial and it would be randomly decided on the trial who would have surgery and who wouldnt and it may be I would then have to just have surgery anyway. They have said one of the core biopsies they did on one of my lymph nodes was cancerous so they said they really need to take the others out as there is not way of telling whether they have cancer in them without taking them out and examining them. Ive found it really hard waiting around for test result and already had to cancel my surgery once due to having to wait for a futher test for HER2 as it came back borderline in the first instance and putting in for the trial would delay my surgery even further and feel so bad now I just want to get on with things as def dont want to take the chance of the cancer spreading further if I delay things. x
Maybe ask your consultant about the POSNOC trial and why they are doing it? I don't know of your personal circumstances so this is just an idea.
It's what I did to get a better understanding of the way(s) to treat my own lymph nodes.
My experience was that there was cancer in my lymph nodes as well as a tumour in my breast on diagnosis and biopsy.
I had chemo and then a lumpectomy.
The standard treatment at my clinic was to do a node clearance as part of the lumpectomy after chemo They don't do a complete one but to a certain level. I asked them not to do this and asked for a sentinal node biopsy to be done at that time and tested for cancer.
I as lucky and it was clear. I didn't have any other lymph nodes removed after that.
Treatment options are changing in the UK on how many lymph nodes are removed or if they do a sentinal node biopsy only or only radiation or what they do.
Maybe have a read about the POSNOC trial (not for you to join but as a way of putting the question to your consultants) and then discuss with your team? The POSNOC trial uses different ways of treating cancerous nodes and surgery isn't the only answer. Although POSNOC has only just started and it will be years until we know the answer there has been a similar trial in the USA that your consultant should know about,
You need to give your assent to any surgical proceedure that is carried out. You can't make an informed consent if your team isn't explaining all the options and giving you a choice. It's your body.
Iam supposed to be haing a node clearance and really dont want this . They took 2 biopsies of nodes which turned out to be cancerous but I still dont understand why they have to take them all out when some of them might be fin..dont know enough about medical stuff to argue my own case but really dont want the nodes removed unecesserily. Im very distressed as dont seem to be able to get answers about why I have to have them all out
Well, my surgeon is well aware of the research and said they are generally moving towards less node clearance. He is on board with me and is going to discuss it at this weeks MDT meeting. I said of course, that I would take whatever would be the safest option! He did suggest I would probably have chemo, I think it was more due to my 'young' (53) age more than the node keeping.
As as I suspected, there will be no definitive answers until the MRI has been done and discussed and with my surgeon having annual leave soon, I think I'm going to have to wait a while before I know the treatment that propose...and whether I will be able to hold onto my nodes!
I'm seeing my surgeon tomorrow and I will definitely be raising my concerns ref. node clearance. Studies and trials point toward there being no benefit...but only if you fit certain criteria.
I will be guided by the teams evidence of course, and I expect they won't be able to fully decide and advise me until after I have had my MRI.
Hi, this also concerns me. I had a wle and snb 2.5 weeks ago, results 10 days days ago,margin not clear and 1 out 3 nodes taken was positive.Consultant recommended re-excision to remove some tissue a get a better margin(this was done yesterday morning), followed by chemo then ANC. His reasoning for the ANC to be after chemo is because the recovery time from an ANC is longer due to potential seroma and he doesn't want to delay chemo starting(I really am unsure about chemo but I will probably go with it, I'm 41 and have 2 dependant kids). I asked would the chemo not blast anything potentially lurking in other nodes but he said there is no way of testing this and that's why a full ANC is recommended. However I will ask about just taking the next level of nodes....
Also he mentioned that another snb can't be done as once the lymphatic drainage system has been interferred with things change-this is what I understood from him anyway.
I'm going to do some research about it but as the full ANC won't be till after chemo I have a few months to look into it. Please let me know anything you find out or decide upon.
It's good to hear other ladies experiences about this, thanks for that.
The sentinel not they took from me had a 3mm met in it, so I guess they would not describe that as micro so maybe that means lots of others will be affected too. Lots to ask, when I see the surgeon on Tuesday!
It is strange how hospitals differ so much!
Back in 2013 I had a bilateral mastectomy and 4 sentinel nodes removed. The first node had micro mets but the other 3 were clear so no further surgery was required. I went on to have chemo and radiotherapy to the area as a belt and braces and now just take tamoxifen. I did a lot of googling on sentinel nodes and found not all surgeons go down the full clearance root as often the extra nodes removed are clear. In the US they opt for radiotherapy as long as they get clear nodes (after the positive node) as this helps prevent lymphodema.
I had mx in January with positive sentinel node so then had further nodes removed but only the next tier (5 nodes). Surgeon said this was sufficient to see if I would have to have chemo and gave me a 10% increased risk of lymphoedema. I had my treatment at Kingston Hospital in London. I haven't had any problems with my arm so far apart from numbness. I wonder why hospitals differ.
I am really worried about this, too! I have had a WLE and sentinel node removed (just one!) and that has a 3mm metastasis. They need to do more surgery as they did not get clear margins and to do node clearance!
I will be seeing my surgeon on Tuesday but I am not keen on risking the possible lifelong side effects. I have looked at your links and others, I can’t make sense of it all but there does not seem to be that much more risk by not having it done. I get the distinct feeling it is recommended by NICE because it is cheaper that having additional surgeries to check on a few more nodes!
I am asking a couple I know who are both scientists, to have a look into this for me…to check the research is reputable and decipher the meaning into a simple form. I’ll post back here if they come up with anything! I have found more links, Googling ‘is lymph node clearance really necessary’ and also try ‘Sentinel Node Metastasis’
Very interested to read these threads. Topsymo - I've never heard of going to a clinic for being high risk. I've had a full axillary clearance and never been given anything but the most basic advice.
Are there any particular exercises or other bits of information that they recommend that you could share?
The only thing I've found caused a little problem has been when I've done too much gardening. I had a little area of swelling and tenderness but to be honest I think it was more like the vein where I'd had chemo last year than a generalised swelling. The surgeon and BC nurse didn't seem interested.
Shortly after my operation I did have numbness and I remember terrible sensitivity. If someone accidentally touched my arm it was horrible. I'm now just over a year on from the surgery. Most of the numbness has remained which I expected as the nerves were cut but that horrible sensitivity has gone.
Doing the exercises is so important and I still do them twice a day now.
I did have a problem with a seroma but I'd say not to worry about that in advance and cross that bridge if you come to it (hopefully not). The seroma problem is fully resolved last year.
take care all
Hi Elaine- do hope you are feeling a bit brighter now. I wonder if you are having chemotherapy to follow your WLE -or maybe you're not sure what is to follow and that is adding to your concerns?
I had Level 3 clearance 18 months ago ( plus a wound infection) but the physical discomfort soon passed.(I think it helped that I had a very dishy surgeon!) I remember the weird feeling of numbness which made my underarm feel really bulky and as if I had some huge swelling there- when there was actually very little to see.
I thought it would never feel 'normal' again but although some numbness has persisted this has really decreased as time has gone by and my 'bad' arm now seems much like the other one - apart from the 'hollow' in my axilla and the scar (ugly but not very visible)
I actually attend a lympdoedema clinic as I am considered at 'high risk' - but I do NOT have lymphoedema and agree with Roadrunner and the others re guarding against it. I do understand your anxiety- but it is important not to get too worried about it and allow it to inhibit your lifestlye. It is only an unlucky minority who develop lymphodoema - and YOU are not going to be one of them!
PS Make the most of your husband spoiling you! BC is hard for him too -and if your emotions are anything like mine were in the early days, he is going to have to get used to a few mood swings- it's par for the course!
I am five days post ANC and lumpectomy. It is very scary place to be, but from my own experience, I can only agree with their advice. Dont expect too much of yourself and rest and take the painkillers - I was in next to no pain 36 hours ago, and now I am in agony and having trouble sleeping. My drain is due to be removed on Monday so I will have to see how I am after all that - I have an anxious wait until the following week to find out whether I will need to have further surgery
My mum had a lumpectomy and partian ANC 13 yrs ago and she suffers with lymphoedema and it is an awful thing to see someone have - she is allergic to nmost antibiotics so she has to ride it out - she has had a bad bout of it this weekend and has spent most of it in bed shivering and feeling sick - I am just hoping and praying I dont have to go through that. Thinking of you xxxx
The numbness does continue and I'm pretty sure it's forever as nerves have been cut to get to nodes, but I find now 7 months after clearance, it's barely noticeable. In fact, it faded into the background before now.
I not suprised you're feeling down. You are ill and having to go thru some very difficult treatment. As regards the arm numbness, it does tend to improve a bit, tho I think some permanent numbness is inevitable. It's great you are doing the exercises tho; they will get easier as early days.
Well had the ANC and all went to plan. Drain came out on Wednesday so I am able to move about a bit easier now. My arm is very sore and stiff and because they had to cut the nerve the upper part of my arm is numb and very sensitive to touch. That is probably the worst part. I am doing my exercises and I think they are getting easier. My main problem is that I'm feeling very down. I think it has just hit me that I have bc and from now on it is going to be a rough ride for a while. I feel so useless because I can't do anything. Hubby is being great but I do get cross with him when he treats me like an invalid!
Sorry for the moan girls. I think I'm just feeling sorry for myself. Perhaps a glass of wine (or 2) might help.
hugs and best wishes from Elaine