Lymphoedema

Hi , sorry you’ve got this to worry about. I was diagnosed with breast lympheodema 10 weeks after my radiotherapy finished. It improved after I took up Nordic walking on the advice of the lympheodema nurse. That was nearly 3 years ago now! Last summer I noticed a slight bloody discharge from my nipple and contacted the breast clinic. By the time I was seen it had stopped, but they did a mammogram and ultrasound which showed nothing untoward. I was seen again a couple of months later and as there had been no further problems, they said just to get straight back in contact if it happened again. So far so good! Hopefully it will be the same in your case. I still have no idea why it happened in the first place! I did wonder if it was from one of my zoom exercise classes where there were quite a lot of upper body exercises, but the doctor didn’t think so. I guess I’ll never know, and just have to trust that nothing showed on the scans so all is hopefully ok. 
I totally get your feeling of wanting to ‘move on’ as it feels like another knock back when these things happen. But it’s good you got it checked and I’d agree that it’s best to have an ultrasound to make sure. I did find it very reassuring (although painful as it’s still quite sensitive!). Good luck with it all, let us know how you get on. Love and hugs, HFxx 

Hi HF

Thank you so much for your encouraging email. I had a very low day yesterday but I'm sure today I will be more positive again. 

I am definitely going to look at Nordic walking, have been wanting to do it for a while so this is exactly the motivation I need.

I am also doing some massaging to try and shift the fluid manually and will do that daily from now on.

All of this is so hard but through it all I do feel grateful as well.

Regards 

Wendy

Hi , can’t recommend Nordic walking highly enough! I am really quite boring about it. When I had a follow up lympheodema appointment 6 weeks after the first, having by then done several weeks of the walking, the nurse was really impressed and was happy to discharge me on a self refer again if necessary basis. I love it and have made new friends as well as seen bits of my local countryside that I didn’t know existed. It’s such a good all round exercise, regular walking is great and I love it too, but the poles mean your upper body gets a workout too, not just your legs. Let me know how you like it! I’ve still got the breast lympheodema as I don’t think it ever disappears completely, but it’s so much better. HFxx

I will order myself a pair of poles. I love walking so this will just be an extra bonus!

Happy feet 1

Where do you go nordic walking if you don't  mind me asking. I'm  just starting on my journey nearly all tests done, waiting for chemo. Take care xx

Hi BobbysGirl, I found my first group by looking on the https://nordicwalking.co.uk/ website. The nearest I could find was St Albans (I’m in Hertford so not far away, 25 minutes drive), so I booked a trial session, which is free, and immediately signed up for lessons. Once I’d done the course I walked at least once a week, sometimes twice. It was worth doing the course as it’s a definite technique to get the full benefits. The action is different to walking with regular walking poles. I did 2 1:1 sessions as that’s what was available quickly but nowadays I think it’s just one group session to get started. Then a more local group appeared so I walk with them now. Today’s walk ended with a coffee in a pub but of course that’s optional! 
Good luck with your treatments, I assume your plan will depend on test results? Difficult time to say the least,  hope you get started soon. Love and hugs, HFxx 

Happy feet

Thank you. I will have a look on website for when I'm  a lot better. I do cry sometimes when I'm  down start chemo 1st week in April, 6 sessions with Fec t and docetanzin. Surgery but not sure which yet then radiotherapy as I'm  stage 1 Grade 3 invasive negative. Daft but just want chemo to start so it's  being treated. Thank you for info and you take care too xx

Hi I had lymphoedema in my breast I was referred by the hospital to a hospice that had a nurse specialising in manual lymphatic drainage.  She was fantastic and as it was a hospice there was no length of time regarding sessions she just carried on until she felt it was ok it was over a year.  Perhaps you could ask your BCN if they do something similar. Good luck keep your chin up and stay positive.

Love Kay

Hi Kay

The BCN did say she will refer me to a lymphoedemq nurse if needed when I see her next month.

I'm the mean time I just massage daily. All the joys.......

Wendy

They haven't confirmed if mine is Lymphoedema or not but I started with a puffy armpit and back of arm about 2 months post rads. I rang the physio at the hospital breast centre for advice and got called in. I have a compression sleeve i wear on alternate days (every day was too much). it is better but still get puffy armpit days and my scars hurt especially the one where they took my sentinel nodes out. I was told to keep doing my exercises. I do massage my boob as all day in soft bra leaves me with hard boob at bottom. its just uncomfy. Just been left with it. My nipple isn't affected as my scars are bottom of armpit and then surgery scar below that. Its frustrating as I don't recall getting warned about it.