Lymphoedema

I had similar experience to you. Surgery in September and Radiotherapy in November. I contacted my breast nurse in January as I was concerned that my breast seemed slightly swollen and achey. I asked if it could be lymphoedema but breast nurse said it sounded normal for post radiotherapy.  I had seen an advert locally for private Lymphoedema clinic and have had three sessions of massage and exercises. I feel it has helped a lot.  It was a really positive experience. I would definitely consider getting some massage as my breast feels so much more comfortable.  

Thanks for your reply Evajean.  I'm glad you're finding massage has helped.  That's something I'll look into.  

Hi there,  have you ever tried self massage?  I had the ok from radiologist 3 weeks after my radiation treatments were done to begin.  Will be a year in May since I started doing it and my breasts feel good with no fibrosis or painful zings.  Would recommend you get the ok from Dr before starting since you are having issues. Here is the link that shows how to do it.  

https://m.youtube.com/watch?v=uRlGXeOcJno

Hope you feel better soon.  I also see massage therapist monthly for manual lymphatic massage.  I don’t have lymphedema but surgery disrupts the lymph system.  
Barbara

Hi  , sorry you’re having these issues, some of what you’re describing sounds similar to my situation post radiotherapy. I had a follow up oncology appointment 10 weeks after my 3 weeks of rads finished, back in 2019. I asked about the fact that my treated breast was bigger than the other (having been the smaller one pre cancer), and also that I’d noticed that any seams left ‘pitting’ on that side. They had a look and thought it was also a bit hot, so gave me antibiotics in case there was an underlying infection. In addition they referred me back to the breast clinic and to the lymphoedema service. I had skin and nipple issues too. Short summary after the various appointments: skin and nipple problems gradually resolved apart from the nipple remaining slightly inverted. Lymphoedema nurse confirmed mild lymphoedema and I discovered that it’s a less well publicised side effect of radiotherapy. Her advice was: more supportive bras (I was still wearing soft post op bras with very little support); massage which I found quite tricky; Nordic walking or aqua aerobics. I signed up immediately for a Nordic walking course and have been doing it ever since, so for nearly 4 years. I love it! At a follow up appointment the lympheodema nurse was really impressed with the results and I was discharged from the service, but can self refer if necessary. 
I would really recommend pushing for a lympheodema referral, it’s made such a difference. And it was a big relief to be given a diagnosis and professional advice re what to do. Of course yours may not be lympheodema but it does sound similar to me, including the orange peel skin under the breast. At least it would be good to rule it out, if nothing else. 
Wishing you well, love and hugs, HFxx 

Just to add, I went to get fitted for more supportive bras at MandS, and have stuck with the same style since then. Also use a sports bra for Nordic walking and weekly exercise class. Xx

Thanks for your reply HappyFeet1.

My Oncology appointment was over the 'phone at the beginning of the year.  The Oncologist also asked how radiotherapy had gone.  I had no problems at that point so between that and making the decision that I was stopping Letrozole and did not want an alternative I've now been discharged from the hospital.  I will still have yearly mammograms for 5 years and have an appointment with the breast surgeon in July. I'm still wearing sports bras and have recently felt well enough to increase my activity a bit. I don't drive so walking plenty hasn't been a problem.  I will continue with massage and see how that goes. I don't really want to get in touch with the breast care nurse and am not concerned about my symptoms being anything more than mild lymphoedema so am fine to manage this myself meantime.  I was aware this could become a late side effect of radiotherapy but from what I've read can be more difficult to improve the further down the line it appears.  I'm glad the nurses advice and exercise has made a big difference for you.  

Morvern xx