Hi my name is Deb - I was diagnosed with bilateral breast cancer in February (lobular).I had a bilateral mastectomy with left axillary clearance on the 8th March. I returned to theatre a week later for further excision on the left (margins weren't clear initially) and a axillary clearance on the right as sentinel node positive. CT scan and bone scan negative.I am having 4 cycles of cycle/dox, followed by 12 weeks of pax and then radiation. Herceptin is also planned. It feels like an incredibly long journey with final dose of herceptin planned for June 2018!!!!I had been travelling OK but have developed some mild lymphedema in my right arm. I am seeing a physio, a lymphatic masseur and wearing compression sleeves at all times. I have been more emotional with these recent developments than I was with the original surgery. Trying to stay positive but struggling.Any advice welcomed.Thank you.

Oh crap, Deb! We all hope to avoid that situation, it is particularly awful because there is so little than can be done to either prevent or cure it. I hope early intervention works for you. Marg

Hi @"Deb P", I had a mastectomy (2 invasive lobular, both hormone positive and 1 invasive ductal tumour which was HER2+) back in 2012 and yes, it did seem like such a long road, but I was told by some wiser souls on this site, that I needed to just focus on one part of the treatment at a time as it could get overwhelming. So, trying to take it one day at a time was the strategy but I know that I sometimes struggled with doing that as I was so used to planning and organising! I did get better at it though as I went through my treatments and although the finish line seemed a long way off, I did get there in the end and have just celebrated my 5yrs milestone.I know that when I developed lymphoedema during radiation treatment it felt like the last straw. It's great that you are on to it early and are doing all the right things as it makes a huge difference in the long run and will help to keep things manageable for you. My poor physio copped a lot of tears and anger in the first few sessions but was incredibly understanding and has been a great support over the past few years and I count her as an essential member of my support team these days.If you think you are struggling emotionally it might be worth having a chat with a counsellor - lots of us have done this - and your GP can set you up with a mental health plan. Alternatively, connecting in person with others who've been through this can be just as useful and there are a number of support groups around. You could check out this page on the BCNA website to see if there's anything near you: https://www.bcna.org.au/services-and-support-groups/ I also found the Encore Exercise program really great for helping with the arm and for linking up with other women who'd been through breast cancer: http://www.ywcaencore.org.au/ Best wishes for the rest of your treatment and feel free to check in often! Jane xx

Hi @"Deb P" , I feel your pain. Lymphedema was the thing that nearly tipped me over the edge... But it didn't!! I agree with Jane in that getting on top of it early is vital and it's great that you have. Has the physio trained you in self massage? It is quite simple and I do it every day, even thought my lymphedema is under control now. My lymphedema was initially quite bad, bit with early treatment and consistent massage it is really well under control again.Hang in there.It does get better.Hugsxxx

It is a long road but you will settle into the rhythm of it. I found the weekly taxol really hard going but once through that even though on herceptin I started to feel better. I got some lymphedema under the arm and breast area whilst on chemo but after chemo completed laser treatment settled it and it has been good since. Travelling can trigger issues so lifting my arm up regularly seemed to make a huge difference. I hope it's the same for you. It's hard going all the treatment and now complications, you have every reason to feel teary and upset. (I had a meltdown when my portacath was put in as it was an ugly scar and felt it undid all the good work done by my breast surgeon ...no tears after the mastectomy and recon...go figure)Keep talking about things. It helps. Kath x

Thank you for your wise words ladies. I hope that this sense of drowning passes soon. My friends tell me that I am brave, courageous and strong - the reality is I can't stop crying. I did think that I was going well given the circumstances- but maybe too well. Everything happened so quickly- I didn't really have time to process anything. The lymphedema has opened the flood gates and I don't know how to close them. I have been told that I will have to wear compression garments 24/7 lifelong. Have you ladies found this to be the case?I have a 13 year old daughter. My greatest fear is that I won't be around to see her grow up. I lost my Dad at the age of 14. In the last two weeks I have struggled to think about a life after treatment. My Oncologist told me to walk out of his office with two words in my mind- treatable and curable. So why am I worrying about the recurrence risk (told it was 40%) when it may never happen? I don't want to live my life in fear. I am a Nurse who has worked in Oncology. I am aware that a positive attitude plays such an important role - I thought I had it in the bag. I am seeing a Psychologist in a few days- hopefully she will help me to get back on track

Bilateral axillary clearance - advice sought

13 Replies

mum2jj
Member
8 years ago
Hi @"Deb P" , I feel your pain. Lymphedema was the thing that nearly tipped me over the edge... But it didn't!! I agree with Jane in that getting on top of it early is vital and it's great that you have. Has the physio trained you in self massage? It is quite simple and I do it every day, even thought my lymphedema is under control now. My lymphedema was initially quite bad, bit with early treatment and consistent massage it is really well under control again.
Hang in there.
It does get better.
Hugs
xxx
Jane221
Member
8 years ago
Hi @"Deb P", I had a mastectomy (2 invasive lobular, both hormone positive and 1 invasive ductal tumour which was HER2+) back in 2012 and yes, it did seem like such a long road, but I was told by some wiser souls on this site, that I needed to just focus on one part of the treatment at a time as it could get overwhelming. So, trying to take it one day at a time was the strategy but I know that I sometimes struggled with doing that as I was so used to planning and organising! I did get better at it though as I went through my treatments and although the finish line seemed a long way off, I did get there in the end and have just celebrated my 5yrs milestone.

I know that when I developed lymphoedema during radiation treatment it felt like the last straw. It's great that you are on to it early and are doing all the right things as it makes a huge difference in the long run and will help to keep things manageable for you. My poor physio copped a lot of tears and anger in the first few sessions but was incredibly understanding and has been a great support over the past few years and I count her as an essential member of my support team these days.

If you think you are struggling emotionally it might be worth having a chat with a counsellor - lots of us have done this - and your GP can set you up with a mental health plan. Alternatively, connecting in person with others who've been through this can be just as useful and there are a number of support groups around. You could check out this page on the BCNA website to see if there's anything near you: https://www.bcna.org.au/services-and-support-groups/ I also found the Encore Exercise program really great for helping with the arm and for linking up with other women who'd been through breast cancer: http://www.ywcaencore.org.au/

Best wishes for the rest of your treatment and feel free to check in often! Jane xx
Zoffiel
Member
8 years ago
Oh crap, Deb! We all hope to avoid that situation, it is particularly awful because there is so little than can be done to either prevent or cure it. I hope early intervention works for you. Marg

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Bilateral axillary clearance - advice sought

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