Hi BC Buddies

I had a lumpectomy on December 10th for Invasive Lobular Cancer and they also did a Sentinel Node Biopsy.

I had good news on the tumour front, clear margins, so don’t need further breast surgery. However one of the two nodes they biopsied came back positive for cancer so I am now going for Axillary Node Clearance on the 21st January.

I’m feeling more nervous this time than I was for the breast surgery, and worrying more than I probably need to about the after effects of ANC - lymphoedema, cording etc. Of course I’m also scared that there may be more cancerous nodes found and what this would mean going forward.

It would be helpful to hear about other people’s experience of this procedure and also what further treatment was needed/recommended afterwards. I’m worrying that even if the rest come back clear, some cells may have escaped from the infected node into my system.

Thank you in advance for any feedback.


Hi Rosy

First of all, we start with a yell of gratitude to those lymph nodes. They do a fantastic job in demanding circumstances! I had 19 of the 21 nodes removed infected but CT, bone and MRI scans have not detected anything that escaped. Second of all, congratulations on your good results.

I’m told the lymph system adapts so there should be no need to worry about cancer spreading because a cluster has been removed (your cancer has gone anyway). You do however need to adapt your life a bit. As you say there’s a risk (small) of lymphodoema so you treat your affected arm with care and respect. There’s also a risk of cording, which can be painful, so you get into new routines to prevent it. And there are other inconveniences you may experience - that kind of surgery is bound to affect nerves and the back of my arm from the elbow up is numb.

  1. Lymphodoema : exercises daily are essential and you keep your scar well-moisturised so it doesn’t tighten up. You remember the affected arm is lymphless and always dry it with upward sweeping motions, ending with sweeping across to your sternum at the front, sweeping across your shoulder blade and sweeping down to your waist. Just remain vigilant for swelling but don’t obsess. The inner arm will be a bit puffy but it feels way worse than it looks - in fact it’s barely visible.

  2. Cording. This is sometimes unavoidable. If you have full axillary clearance, there will be a vacuum into which all surrounding tissue will slip. If you’re unlucky, it will form a solid wodge that needs to be exercised, stretched and massaged away. It’s not painful but the massaging isn’t comfortable unless it’s done regularly. The remaining lymph vessels apparently cling to each other, having nothing left to do, and can form what feels like a tight cord, running from that wodge down to your elbow or, if you are very unlucky, to the wrist. You can feel it, it can be painful and it restricts movement. Your breast care nurse will show you how to massage it away and, again, you do it regularly. If she doesn’t, post here and we’ll direct you!

  3. I’d advise you to buy one of the crystal deodorants (eg Holland & Barrett - you just dampen it under the tap). I’ve abandoned antiperspirant both sides as the crystal is so effective. Keep the scar well-moisturised with whatever you want if you aren’t having radiotherapy; otherwise, stick to a water-based cream like Aqueous, some of the E45s or Aveeno. If you are having radiotherapy, avoid anything oil-based and I’d steer clear of the baby products (they aren’t as ‘pure’ as you’d expect).

  4. Worrying: this is inevitable and I’m sad to say there is no 100% guarantee that a rogue cell won’t have escaped to wreak further havoc at some time. However, as I said at the top, the lymph nodes are amazing. If your team think there’s a risk, you’ll have the necessary tests (usually a CT or a bone scan). I hate saying this but you will never live without a degree of fear that it might come back so it’s up to you to think carefully about the life you want - one filled with worry and fear about something that might never happen and you die of old age having wasted all that energy OR one where you accept the possibility and decide you’ll deal with it if it ever happens. This is the difficult part and none of us, I reckon, can honestly say we live without the fear. But many of us can honestly say we’re just getting on with life, get the occasional surge of fear (I hate Macmillan ads - soooo negative) and place it firmly back in its box somewhere in the mind where it does no harm. It’s very early days for you - don’t expect miracles but you will find your own way. And there’s plenty of help.

I wish you all the best. Look after that arm and pray you don’t get the unreachable itch lol!

Jan x


Hi Rosy 

Jan gave details of what can happen with an ANC. Here’s my findings of the practicalities of the op that I had 8 days ago.

  • No pain - pec ache (had a Mx too) like I’d overdone the gym and numbish underarm/tricep - think like when your dental injection starts to wear off
  • I’m on 1 x paracetamol am and 1 pm Taken 2 ibruprofen in the week
  • Drain - annoying more than anything. This was my one worry about the op… the leaflet was frightening! I can drain, clean and re-vac in minutes. Less if I had my glasses to hand to record the volume. Mine decided to play up and not click together, which a quick call to the ward talked me through. Ditto when it wouldn’t drain
  • I was given a little cloth shoulder bag to carry it around
  • When I went out, I popped in the inside pocket of my gym-style jacket
  • Sleeping with it was no problem
  • Deft use of a big carrier bag as a shower cape protects my dressing
  • A lanyard keeps the drain under the cape in the shower
  • Drain came out today. Again, no pain, just a funny sensation I was warned about
  • Exercises are helping with the movement - though I am a swimmer so strong in that area
  • No stretching with that arm - it’ll smart. If you have to pick anything up off the floor, crouch right down even using your good arm

Talk to your BCN. There is no such thing as a stupid question. The more you use them/ask the better they can be with each interaction with you from the start as they get to know you.

I am expecting chemo due to having an ANC - not confirmed yet. Follow up appointment is next week. I went to GP with a node lump, so knew it’d spread although I couldn’t feel any breast lump. CT scan shows no other spread so the little darlings did their job.

I hope that helps to answer some of your practical questions. Please ask if you have any I’ve not covered.


Hi Happyvibes/Rosy

That’s great your lumpectomy margins were clear. I’m sorry you have to have more surgery though.

I had masts 2006 and 2007, due to two different type primaries I hasten to add, albeit only a year apart (yeh, just unfortunate), NOT due to spread. BOTH with full ANC as was standard practice back then, before the advent of SNB.  ALL nodes were clear, so no chemo required, phew.

I had cording with one, due to those redundant lymph vessels, Jaybro/Jan mentioned. But was soon sorted with regular stretching exercises.

I’ve never had problems with lymphoedema (she says, rapidly touching wood). I always use a body lotion after showering/bathing anyway, and always apply using UPward movements to aid arm drainage/circulation. BUT I have to be EXTRA vigilant, ref. avoiding scratches, cuts, bites, sunburn. You learn to always keep your arms covered by long sleeves for gardening and such work, wherever likely to get scrapes/scratches, or for out in the sun. Never have blood taken from, blood pressure cuffs, injections of any kind into my arms, be that anaesthetic or innoculations, because of them being immuno-compromised and the risk of lymphoedema developing. Medics have to use other areas, such as ankle for blood pressure cuff, top of foot for blood samples, ankle veins for anaesthetic. It can be a bit more “ouchy”, but you just get used to it.  I do have to remember to tell or remind medics sometimes, though.

You’ll be told all of this and the above, and it all becomes 2nd nature. If you do get a scrape/scratch/bite on arm or hand, you put a good antiseptic, such as Betadine ointment (broad spectrum), and plaster on as soon as poss. Any further probs with, you go and get immediate antibiotic cover from A & E, as a matter of urgency. You’re advised to take antibiotic cover with you if you go abroad, in case you’re bitten, scrape yourself or such. 

I’ve only ever once had to get emergency antibiotics. Bent down to pet a dog tethered outside a petrol station. Damn thing BIT me!!! Broke the skin on my hand. Had to sit down inside because I felt faint within 15 mins (not sure if it the shock of or due to systemic reaction?). Wasn’t anywhere near home for antiseptic and plaster. Within 30 minutes, I had what’s called “tracking” - red streak travelling up your arm vessels, where the poison/infection has entered your system. Yes, it can happen that quickly without your lymphatic protection!  Had to get myself to the nearest A & E for emergency antibiotics, which soon halted it all. Needless to say, I don’t pet any unknown tethered dogs any more , only those that I DO KNOW!!! 

I’m not wishing to “frighten” you with all this, but you DO have to be EXTRA careful.

Hope all goes well for you with your op on the 21st, Rosy. Let us know how you go on, will yer, please.

Lots of love,  Delly  xxxx 

Hi Rosy

im in a very similar position to you with very similar worries. I had a lumpectomy on 2 Jan and was told yesterday that margins aren’t clear and 1 x SN was macrostatic. I therefore need more breast surgery and also a full node clearance

being honest, I’m in full meltdown and freaked out about spread beyond lymph. I may well be over reacting but every headache or twinge is now attributed to cancer and I know that’s really not helpful for me or anyone else!!  

I wanted to say hello and make contact as we seem to be similarly worried. I’m sure we will both do the surgery and come out the other side in a few months older wiser and calmer. I certainly couldn’t be more frantic than now

take care and hopefully catch up soon

y xx

Hi Rosy

I hope all went well yesterday and you’re on the road to recovery today.

Any practical questions, please ask.

I reached the top of the door frame this morning with my exercises - that’s usually saved for last ‘go’ in the last 2 sessions of the day. Whoop, whoop! ? 

Gel x

Hi only just seen this I am going through very similar to you and I was wandering how you are doing if you are up to a reply . Mastectomy July, lymph clearance August same worries about escaping cancer cells now have seratoma under arm BCN tried to drain but it didn’t work waiting for 2 week results on Wednesday :two_hearts:

Can I ask how your shower cape works. Im trying to picture how to fix that and my drain in place but still being able to clean surrounding areas. Thank you. X