Baseline Measurement for Lymphoedema

lrb_03

@Lynn65, my treated breast was warmer than the other for about 2 years after radiotherapy finished. If I  overheat, it's still warmer than the other, another year on. You can have some swelling in the breast for months after radiotherapy,  so it may settle over time. Have you checked out the Australian Lymphology Association website?  They have some information on the site. You can also check to see if the lymphoedema therapist that you saw has recognized qualifications. 
There are some options around to assist with breast oedema, but I  wouldnt recommend spending a lot at this point
Take care

Lynn65

Hi @irb_03 thanks for your response.  That’s very interesting about your experience of treated breast being warmer for that length of time, and  I didn’t realise that the swelling in the breast from radiotherapy could last for so long.  I will check out the ALA site, thanks for that.  Good point about having a qualified therapist - yes, she is qualified thankfully . I think I need to work on learning to ask more questions while in the appointment.  I prepare for the things I know I want to understand better, but then new things that come up in the appointment often hit me by surprise, and only later do I think that I wish I had asked more questions to clarify those things.  Live and learn from experience I suppose. Thanks again.   

Sister

There are some exercises you can do to encourage the lymphatic system to work properly.  But I have also heard that aqua helps a lot - do you have an Encore group in your area?

Rosie_BCNA

You may be interested to watch the webcast on Understanding lymphoedema following breast cancer treatment, available through this link - https://www.bcna.org.au/understanding-breast-cancer/resources/webcasts/
Those who registered to
watch the webcast can just your email address in to view the webcast. If you  haven't registered, you will need to complete the
Registration details then enter the email into the toolbar and away you go.
This is the first of two sessions. The next one will be available to watch live on May 26th - local times are noted on the registration page. 

Lynn65

Thanks @Sister that’s a good suggestion.  We don’t seem to have Encore in Victoria (or near me), but I did join a gym 10 weeks before diagnosis (!) and that does have aqua classes.  I have checked class times — and have signed up for tomorrow morning - they have a few options that I can try out. 

Thanks @Rosie_BCNA - I did have a look at that one, but wasn’t aware of the second one - I’ll put a note to check it out for May. 

kmakm

@Lynn65 No we don't have Encore here in Victoria sadly.

Check this out, it might be of interest:

https://www.counterpart.org.au/stepping-wellness-2018/

Sister

I used to do aqua years ago and the Encore sessions weren't really very different from those.  A word of warning as many instructors don't know enough to mention it but be careful not to hyper-extend when you're in the water - really easy to do as everything relaxes a bit.

Lynn65

A migraine kept me from attending the aqua class Saturday but I’ll give it a go in the coming week.  

@kmakm thanks for that link - will check it out.  

@Sister thanks that’s good to know that aqua sessions will probably be similar to Encore.  And for the heads-up warning on hyper extending in the water - I would never have thought of that!  I’ll keep that in mind. 

Buying new bras today.  I think the compression even with old stretched bras (wearing two sport bras as suggested by a friend who used to be quite athletic - it does add extra compression even for a tired bra!  A simple idea that would never have occurred to me. 

lrb_03

@Lynn65, it's hard to prepare for what you don't know. I almost always come away from appointments,  particularly with a new specialist, and as I process the information from the appointment,  more questions come up. 
Late last year I had an appointment with yet another specialist, an over the next few days more questions came up in my head. I found that there was a practice email address, so I wrote my questions in one document and emailed it off as an attachment. I had a response within 48 hours 
Just might be one way around it, particularly with infrequent appointments 

Lynn65

@irb_03 that’s a good suggestion, I’ve started a running log of medical questions, and for ones that I can’t find answers myself and that I need answers for, I’ll send off.  Thanks!

Lynn65

After wearing bra for a number of days, exercises, swimming etc, the swelling in breast decreased but didn’t fully disappear and still just feels Not Quite Right especially after exercise. 

I managed to get an appointment with first lymphodema specialist that I saw — we covered a number of things, but the main thing was she taped my breast with Kinesio tape and suggested putting a rectangle of Mobiderm plaque textured material in my bra below my nipple  — both to help by providing additional compression.   Even with the new bra and lymphatic self massage, I still feel like I get too much swelling, so I’m glad to have that to add to the arsenal (this is war, right?).  My partner came along and videoed the kinesiotaping as I am wanting to be doing this for myself (or with help from my partner if needed).  I looked up the tape - not too pricey for a roll of it and each application lasts 3 to 5 days.  

This is starting to look like migraine management - figuring out how to manage it, then just following through.  No one signs up for any of this, so just have to make the best of it and grateful for the help from folk on here and the lymphodema physios. 

Nadi

Well don't I feel lucky. I am one of the 5%. SNB, lumpectomy (Nov 2015), chemo (docetaxol) and radiation and here I am only now just diagnosed with Lymphoedema. 

Afraser

Oh bad luck!! You don't need that, but it's doable and possibly improvable. I have found a good therapist to be invaluable but once you know how to treat it, you can do a lot yourself. Best wishes. 

kmakm

I'm so sorry @Nadi, that is rotten luck. K xox