@debi1 i think our minds are our own worst enemies, running away with all sorts of different scenarios. It’s reassuring that a consultant has felt it and also you’ve had a radiotherapy planning scan and it possibly would have shown up on that if it was anything suspicious. I’m only thinking that because surely they need to see where they’re treating in people who still have active disease, but I’m by no means an expert. Easier said than done but just take 1 day at a time and it’ll be over with before you know it. They’ll have a good check on Friday and I’ve got everything crossed that they tell you that all of the treatment you went through has worked. Please let me know how you get on. 
xx
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What does levels 1, 2 and 3 mean? You asked me the same thing and i cant find anything about it xx
There are 3 levels of axillary lymph nodes. Level 1 is lowest then 2 then 3 is higher up.xx
Hi Linda 
what did you have then out of curiosity? And how did you get told about the levels? Your query suggests it’s important?
Must admit I thought an axillary clearance was just that, a clearance of them all in the axillary area. I just got numbers of nodes cleared and how many were cancerous, no-one mentioned levels. You’ve got me curious if we should have had more information! x
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Oh sweetie, sorry to hear you’ve been worrying 
. Understandably so, I’m sure we’d all be the same.
Don’t forget our radiotherapy planning involved scans and stuff, so anything obvious would’ve stood out then, and sounds like your post radio exam was thorough, so hopefully its just a ‘byproduct’ of procedures, but I understand your worry.
Sending lots of love and hope this week goes quickly for you xx
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I had a recurrence in my axilla that is HER2 and hormonal. I have finished chemo. I wasn’t keen on a clearance then found out it is in the scar tissue so level 1 needs removing to get clear margins. I was told initially as I am small in that area if it returns it will be impossible to remove then changed to hard to remove any remaining nodes as there won’t be much of my axilla left. I am just worried re the side effects so have done some research and found out that level 3 is not removed in a standard clearance and its 40% likley you will get Lympodema as opposed to 20% if you don’t have level 3 removed. I’ve also been told that when you have a recurrence a clearance is done. One onc said if its in level 3 its metastatic and another that isn’t the case. Anyway I am getting a second opinion this week as I am getting told conflicting things and want to make sure I am doing the right thing having level 3 removed and don’t want any regrets.
I really hope you get the answers to make a decision which helps you. Sounds like you’ve spoken with a number of oncologists and you need to make sense of conflicting information. Have you had a chat with the BCN staff to make sense of what you’ve been told?
For my part as a first time diagnosed patient, I was given no choice on my levels (didn’t know there were levels!), nor information on good or bad in terms of likely metastatic spread between different levels, it was just “the surgeon will decide what to remove” before my mastectomy and “he cleared it” after surgery. Yes, my armpit is both numb and misshapen, yes I may have a higher risk of lymphoedema, but if the clearance in any way reduces or even stops spread through my lymphatic system, I’ll take that. But that’s just my opinion and approach to my cancer journey.
Good luck with your decision-making and getting clarification this week 
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@Linda_Corinne @pipspops
Yeah i just got told I had an auxiliary clearance. Got me curious now too. Will speak to my oncologist at some point about that. As far as i was aware all of them had been taken xx
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I had level 1&2 but I only know that because I went back through my pathology report. No-one mentioned to me before. 3 weeks on my arm is still very numb .
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@debi1 how are you feeling today??
I totally get your worry and I’m sorry you’re feeling like this all over again
The 7th can’t come soon enough I bet!
I will be thinking about you this week
Xx
Thankyou. Im a bit better. Its never far from my mind but trying not to let it get on top of me from now on. Its weird as i had convinced myself it wouldn’t be anything to worry about then it just hit me omg what if its all starting again. I really appreciate the support. Ive been relatively calm throughout all the treatment. Not having time to think about it too much i suppose as just getting on with all the appointments. Anyway i am doing better today so I’ll try not to worry until i know there is something to worry about. I say that to others so time to take my own advice. Thanks so much. Xx
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Well that is standard. Yes def ask as I would want to know. Level 3 is contreversial as the benefits don’t outweigh the risks always. This is why I want to be sure and have no regrets. It can affect use of arm, how it looks, swelling, pain etc
In what way is your armpit mis shapen? Can they rectify that later?
It has a mid-indentation and slight skin creasing compared to my other underarm now, but then I have a hollowed out area almost the size of a plum at the end of my mastectomy scar line lower down which takes your eye off my underarm if anyone’s that close to see!
. Without that, it’s not horrific or anything, just more…… creased, like something has been removed.
It’s getting better with time but still numb-ish 9 months later and although I’ve got pretty much full arm movement back, it’s difficult to shave under that arm now. It’s hard but possible with a hand ‘spreading out’ the indented skin, and a mirror to see the process because of the lack of feeling, rather than previously just shaving blind by touch if you get me? Just need a third hand 
to hold the razor!
I’m afraid I’ve no idea if further surgery to add volume would change the look, I’m not personally interested in boob reconstruction/tinkering which may pad it all out, so haven’t asked the question 
Hi all
I can’t remember when i last posted. I had surgery two weeks ago- a mascetomy, implant reconstruction and complete node clearance including level 3.
I got my results today. I don’t know what to think. There was more DCIS then they knew about, there were still live cancer cells in my main tumour and three lymph nodes had live cells in them.
I had 10% residual.
So I’m due to have 3 weeks radiotherapy and oral chemo (Cape).
I wanted 100% and no more chemo.
But I’m being positive or trying but I’m disappointed. The surgeon and oncologist said it wasn’t surprising because I had to miss chemo because of my side effects.
Does anyone have any advice? I’m worried about the oral chemo because the main side effect is usually diarrohea and ive already had two months of that and having to isolate because i couldn’t predict when I’d have to rush to the loo.
It might not be that bad!!
I suppose i feel i can’t really tell people, I’m scared and I’ll go through all of this and end up with cancer again.
Sorry to ramble…xx
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Hi @cf640
How long do you have to take cape for?
I only ask as I discussed starting abemaclibab with my consultant which is target therapy and that also can cause horrendous diarrhoea and hair thinning so I am anxious about starting it. (I’m hoping other ladies on here have had good experience to date 
)
My oncologist said I could wait up to 12 weeks after radiotherapy to start it and I said no - I wanted to go ahead sooner rather than later as I hate the unknown. (So am getting them next week but am worrying I’ve gone to fast into it! I’m hoping it won’t be that bad. I have a friend who is on it and is fine . My tamoxifen and zoladex has been fine so why I am I still catastrophising?
What I am trying to say is - can you have another meeting with your oncologist to talk things through - mine offered to so I’m sure yours would to help answer your queries/worries as we always have questions after we leave a consultation.
I’m with you - we want to do everything to stop it coming back worry about side effects and about it coming back anyway. Xxxxx
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Hi,
I felt the same as had 4mm residual and cape was mentioned at my post surgery meeting, this had never been mentioned before so a bit concerned when you hear more chemo 
I have done some research and seems it is very tolerable for most people! I have an appointment with my onco tomorrow so will find out more then! I need to find how much radio I need and whether I will complete Pembro, so lots to discuss xx
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@cf640 and @kerrylou1
Just throwing a quick feedback on my experience of abemaciclib side effects while you’re discussing it. Zero. None. Expected the worst and nothing to date. 1 month down, picking up 2nd box of tablets tomorrow.
I’m of course not underestimating what they can be, but it may help to know not everyone is affected xx
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Wowsers thanks so much for the reply @pipspops . Love the positive feedback - right you’ve really helped me… I’m not going to google side effects anymore and go for it 
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Glad to help sweetie 
Its got a really bad press, so its so important that any ‘no side effect’ experiences are spoken of too. Its a bit awkward when you know some people are having a terrible time, you feel like people think you are showing off! But when you are trying to make a decision and no-one speaks up, you’d swear its an awful drug.
I really hope it goes well (dare I say after googling I’ve got a house full of toilet rolls, so if you run short…) Seriously, you’ll only know once you try and the dosage can be reduced if need be, and you are well monitored and looked after xx
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