Hi everyone,
I’m hoping someone will be able to offer some advice. My B C. Nurse noticed some swelling in my reconstruction, the skin had a “peau d’orange effect. I was referred to the lymphoedema clinic where I was seen today by the nurse. She tested the reconstructed breast with a machine which showed up a reading of 85 and 86 in the bottom quadrants and 76 I think in top left quadrant. The nurse has advised that it maybe due to surgery or radiotherapy or both. I’m quite upset as I have been doing my exercises and massaging daily. ( my surgery was Oct 22).
The nurse has shown me how to do lymphatic drainage massage, and advised to continue to moisturise and massage the breast.
She has booked me in for 4 sessions of laser and hivamat therapy. I have no knowledge of what this is? Or how it works? Has anyone had this therapy? Has it worked? Any advice would be greatly appreciated.
JUST WHEN I THOUGHT I WAS BACK ON TRACK WITH MY NEW NORMAL.
I’m sorry you haven’t had a response to your question. I’m sorry to hear what you’re going through, it is not a surprise that you feel afraid of the unknown.
I am sure someone will be able to share their experience with you. In the meantime please know that our nurses are here for you any time, here on the forum on the Ask our Nurses your questions or over the phone 0808 800 6000.
Hi Sab53. I am new to these forums though my BC was back in 2015. My BC was discovered through routine breast cancer screening and I was lucky that it was found v early. Mine was a grade 1 and I had a lumpectomy and radiotherapy, then put on a 5 (became 6 because of lack of follow through care during Covid) year programme of tamoxifen. What is very unusual about my story is that I developed lymphoedema of the breast following radiotherapy even though I only had one lymph node removed. Apparently the chances of this happening in such an early diagnosed cancer and the treatment I had, are almost 1 in a million but I was that 1. The NHS will only give you a few session of MLD and then you are left to your own devices. I have had to prioritise spending money every fortnight seeing a lovely MLD therapist who uses a hivamat. The hivamat is really good at softening the breast tissue, which with Lympoedema gets very hard and uncomfortable. Sadly, nothing will help reduce the swelling/size issue which means I’m very lopsided but I’m over 60 now so am less upset than I might have been had this happened to me earlier in life. A laser I think helps break down your fibrotic tissue. Neither of these treatments will cause any harm so I hope you have taken up the offer of having these treatments if the NHS offers them. Again, it’s a postcode lottery. If you have any further questions, please do contact me via this forum. I’m hoping yours isn’t true lymhoedema as unfortunately it is a lifelong condition and can’t be cured. Wishing you all the best
Hello Sasha1,
Thank you for taking the time to respond to my question. I had my first session of laser therapy and hivamat oscillation therapy yesterday. Before the treatment I asked the nurse to do the meter readings for the fluid in the breast and I’m pleased to say that the readings were lower than when I went for my initial assessment 3 weeks ago. I have been doing SLD myself and have had 2 sessions of lymphatic drainage with a therapist. Not sure if it’s the SLD or the therapist that has made the difference or a combination of both. I do feel the breast is softer now.and I can see how it’s meant to feel. After my surgery I knew the breast would feel different, it did feel heavier and firmer than the other breast but I thought this was because it was stomach fat not breast tissue. I have 3 more sessions of the therapy left and they will call me after 12 weeks to see how I am managing the SLD myself.
Are you managing your lymphoedema ok ? I was really upset when they told me it was lymphoedema, it got me really down as I feel I was doing everything they had advised me too, yet the gift of cancer, keeps giving!
Since my assessment I have been doing SLDx2 daily and quite religiously too scared to miss it incase fluid builds up again.
Hi Sab53
It sounds like you are managing the condition really well yourself. I don’t ever seem to have got the hang of SLD - maybe because I’m really bad at any form of self therapy, beauty or healthwise as I don’t have enough patience. By the time I was diagnosed the oedema was bad and I was very swollen on the breast where I’d had the lumpectomy and readiotherapy. I was on holiday when it happened about three month after the initial treatment. Lymphoedema of the breast is also quite difficult to manage when it comes to compression garments (ie bras) because a bra can’t get between the breasts and apply pressure to the inner upper quadrants. That’s where I get a hardening between treatments. I’ve never had any readings done so think you are quite lucky that you are somewhere where that is offered. Ironically I am under St Georges, Tooting, where one of the leading lymphoedema consultants practises. Their equipment is basic. When I had my six free treatments there was no laser or hivermat. Keep me posted how you go but I am hopeful your outcome may be better than mine!
Kind regards
