Axillary clearance advice needed

Hi Helen and NBI,

Well I've got back from my appointment - cancer was in 1 more lymph node (so 2 in total), I thought I was getting my Oncotype results today but they take another 10 days and I'll be contact by the oncology department about them. 

I asked my consultant what his gut feeling was about chemo and he thought I'd be recommended it. Although I was trying to prepare myself for this, it's still not the same as someone saying those words to you so I've had a bit of a sob.

He thought that because of my age (49) and the presence in lymph nodes that they'd try and give me the beset chance of a long life. I'll be honest, I cannot wait for 2021 to be over and to get to a stage to put this all behind me. I know that I'll pick myself back up again in a day or so, but at the moment I feel pretty low. I think it's dawning on me that before I could cover myself up and look fairly 'normal' to the outside world so I had some control over who knew, but with chemo it's going to probably become obvious to the world and his wife that I've got cancer. Maybe reality is kicking in.

I'm pleased that you got good results Helen, maybe mine are similar, and keep feeling positive - I'll be back in touch once I've cheered up!

have a good weekend

Helena xx

Hi Nardine, thanks for the update and good wishes- maybe you've seen my other post to you both about my results this morning?

Thank you too for the positive feedback on your chemo, I'm really pleased to hear you're doing well. The consultant said I was recovering really well from the 2 lots of surgery, so i'm going to hold onto that and think I can apply the same 'bounceback' to chemo!! like I have any control over the matter...do you find the Macmillan chemo forums useful? I don't want to depress myself reading them...

Anyway I'm off to get my 2nd covid jab shortly - what a day! 

Have a good weekend

Helena xx

Hey Helena, yes I have seen your update and I’m so sorry it’s not (a) definitive yet and (b) potentially heading down the chemo route. 

When the doc first outlined what my treatment plan might look like and said the word “chemotherapy” my first response was no way, I’m not doing that. But then we chatted some more and she explained that it would give me the best treatment outcome given my age (52) and the fact that the biopsy had shown one axillary lymph node affected. That was confirmed with the subsequent MRI.

It took a good couple of weeks for me to feel comfortable with that but I did end up feeling just that and prepared to approach it as positively as I could. It’s been nowhere near as bad as I imagined it would be. I’ve been able to exercise throughout, taking it easy in the first few days and building it up . I have no proof but personally think this has helped me manage side effects. Also eaten well and slept fairly well, apart from the first couple of nights when the steroids make me a bit restless but I only have those for a few days. If it’s confirmed you’re headed down that route and know what regime you’re on, if it’s similar to mine I’m happy to give you a heads up on what I’ve experienced and answer any questions.

The chemo thread is helpful to dip in and out of, to see if anyone has any tips for side effects you might be experiencing. But not necessarily for daily reading. The threads also get quite long so it’s sometimes tricky to find what you might be looking for. Don’t read them now, wait until you definitely know what your plan is

And….if you find you’re not headed the chemo way, I’ll give you a big clap and a cheer from Buckinghamshire! 

Try and push it to the back of your mind for now - although I know that’s easier said than done. Have a lovely weekend 

Nardine xx

Hi Helena

I am so sorry, but don't give up yet. I had cancer in 6 nodes as with you I am waiting for d x result if under 25 no chemo my consultant was very upbeat that probably would not need. I am 64.

I like you are waiting the call. I am dealing as follows:

Cancer has gone now the next stage is prevention of it coming back. If that means chemo then we will get thru it together with nardines help as she is a bit in front of us. Thanks nardine

Try and have a relaxing weekend

Lots of hugs

Helen2021 .

Hi how are you doing?

Helen2021

Hi Helen, I'm OK - I've had a few wobbles over the last few days and went to the Maggie's Centre at Leeds this morning for a good cry.

I know I've not been on the forum for a few days, I think the prospect of chemo has hit me like a truck and the realisation of what's been going on over the last few months has started to sink in. I just needed a (mini) break from cancer (if that's possible).

I meet friends for walks and they're all lovely, but I end up feeling like I need to be the person they expect me to be i.e. positive, 'strong' and I'd just reached a breaking point so I had a good chat with a lady at Maggie's so I could just be honest to her and myself about feeling like shit!  I felt much better for being able to let it all out.

She explained that it sounds like I'm in the 'threat' stage and getting by on adrenaline and not able to access my 'soothing' stage which will help me process and accept it all. I'm going back next Monday for a relaxation session and I've signed up, although not sure about it yet. to do a 4 week Managing Stress course at the back end of June. They do have their relaxation sessions via Zoom too, I know you're miles away, but you might want to consider giving them a call for a chat if you feel it would be a benefit to you? 

Physically I'm coming along although not very happy that I was told I've got cording in my armpit so need to work through that. I've also got a 121 Pilates session tomorrow to try and get me more upright and stretched out.

How are you doing? Have you had any more results yet?

Helena xx

Hi, I am so sorry you crashed, but you need to it helps. I did as well. I called the Macmillan help line got thru and apart from strangling out my name just sobbed for what seemed ages but probably wasn't. The man was so kind when I did eventually poor everything out he was so kind I started crying all over again.  I think it is necessary and I am guessing others on the forum will all say they have been there.  I felt so much better afterwards altho I had another wobble yesterday cooking tea I just started sobbing. I have come to the conclusion that crying is part of it all. 

Trying to pick myself up I have cording and mild lyphodema now to boot. I cannot go into the garden unless my arm is completely covered, etc etc so many restrictions.  The tablets they have said I will go on either as soon as result is thru or after chemo appear to have horrendous side effects including hair loss.

No wonder we have both melted down like you I knew it was coming but suddenly it's real.

I will call Maggie's cos I need all the help I can get.

I appreciate your friendship I don't feel alone knowing you are going thru it all as well it really helps me.

Still waiting for d x result.

Lots of hugs

Helen2021xxxxx

Hi Helen

it sounds like we're having a very similar experience, doesn't it? It is good to cry it out, I was wondering to the lady at Maggie's why now, when I've been pretty calm throughout? She suggested it might be because up to now I've had something to focus on i.e. the next appointment, scan etc and at the moment I haven't got that to aim towards, I'm just waiting for this DX result.

 If it makes you feel any better I've got cording too - in my armpit, it feels like banjo strings. What can they do for your lymphodema? What pills are they talking about post results/chemo, is that the equivalent of tamoxifen? I imagine if you look on other forums then these side effects may not be guaranteed, so hang on in there. I know some women on tamoxifen (which I'll be taking I think) have side effects whereas others seem to be OK - I'm just hoping I'll not notice much difference as I'm pretty menopausal as it is!!

Let me know how you get on with Maggie's and if you can brave the drive I'd suggest you go and visit them if you don't have to work every day - they'll make you tea/coffee and it's a lovely place just to sit or talk or read - it was really calming. I suspect you could probably take your own lunch there too and make a day of it. I was there all morning because after I'd cried in front of a total stranger I got chatting to a lady whose Mum was having treatment and she was waiting for her - it's a very welcoming space. Does the hospital you're being treated at have any cancer support services you can access too? Thank God for Macmillan being there too!

I think that I have to recognise that I cry for a reason - mostly just to release pressure that builds up, but I do feel better afterwards, and the next day you can feel totally 'normal' again and back to your cheerful self. I was told to stop beating myself up about it all today, so I'm going to try and take that advice. I know that there are going to be many more ups and downs if I have chemo - up to now I've been able to hide the cancer away under big coats etc, but chemo will change all of that. I wonder if I've been in denial to myself about having cancer as well as trying to hide it from those I don't want to know about it. 

I'm always here for a mutual moan or cry, do take care of yourself  -we are both going through a major trauma and all of the emotions we feel on this crazy rollercoaster are totally normal and understandable. I think recognising that will help us be a bit kinder to ourselves,

Helena xox

Hi helena2021 and hellbells71 

I hope you don't mind I've been following your stories and you have really helped me alot. My situation is very similar to yourselves I was diagnosed in Feb and   had a maestectomy 6 weeks ago with a diep failure (the reconstruction didnt work) and then had auxillary clearance nearly 2 weeks as its in one lymph node. I am waiting for results on 2nd June as to whether chemo /radiotherapy therapy and then I think its hormone therapy. Ive been trying to get the pain relief right after the auxillary clearance. The arm is just so sore. I am seeing the nurse on Monday so they can check it then. I just wanted to say thank you to both of you. I have been struggling and not really knowing what to do and  because of your thread i searched for Maggies local to me who i feel have really helped. I had a melt down on the phone with them but they have logged me on to some complimentary therapies and I know they are there to talk at any time. 

Hope both your treatments go well and good luck with your results 

Thank you both once again x

Hi Stren70 - thank you for taking the time to pop a message onto the forum, and I'm sorry to hear that you're struggling, it sounds like you've been through the ringer over the last few months. Much as I wouldn't wish this scenario onto anyone, it gives me some comfort/purpose to know that I can be helpful to others.

It sounds like we'll all be going through things at a similar time so do let us know how you get on with the nurse and treatment (if you feel like it). I wonder whether it's the pause between surgery and finding out results that is causing our meltdowns - before we were just getting carried along with scans,ops, clinics, and it's the first time (for me anyway) that I've had without an appointment to look towards.

Is your arm sore all the time, or is it when you move it? I was told to massage mine gently twice a day to desensitise the nerves, which was really painful at the start but is helping over time - it's still sore on the underside of my arm but they're big nerves to try and get better. I hope that you get some help from the nurse on Monday and sort out the pain relief, my only advice (should you want any) is to make sure you have constant pain relief - don't wait until it starts to hurt!

I'm really pleased that you've reached out to Maggie's and had a positive experience - hopefully it's helped release a lot of the pressure that has built up over the last few months and you can start looking after yourself with the complementary therapies

Take care

Helena xx