Are you doing anti-lymphoedema exercises post surgery?

Thanks for this Dedalus, I wasn’t told about exercises either after surgery, during chemo or rads, it’s not been mentioned at anytime since either. So I didn’t do any!

It was only when I started at the gym I realised just how tight my left shoulder area was.

I had 4 nodes removed too and rads to 3 fields.

Hi Dedalus,again,lol,

I have self diagnosed cording and have been using a great YouTube video.I also joined an on on line Jobst lymphedema site.I'll try and find you the links.My BCN has confirmed my cording and I showed the two senior nurses in the chemo unit,who knew nothing about it as a side effect as the only have more serious ones in the unit.They are going to do some C.P.D.on it!!

Regards,

    Yvie

The YouTube site is Mercyhealth,she is very serious and it is very thorough.

"Self-massage for upper extremity lymphedema"

 LymphConnect by Jobst.has a specialist nurse who s also a sufferer and is available for questions.Jobst is the manufacturer of the sexy surgery stockings etc and train nurses,doctors etc

Dedalus, Info about lympheodema is very patchy. It is awful that you and ruthie2 were given no information. I was advised about arm but not breast lymphoedema. I asked fir arm compression sleeves, was measured, but had to buy them. I wear them in risky situations I.e. flying, and in Australia ( very nasty bugs!) Also after drips and cannulas. I have to be careful because I had lymph node clearance on both sides. So far I have been lucky. I did get breast lymphoedema, but it gradually went. I was taught lymphoedema exercises and did them fir about a year after surgery.

Thanks to all for your replies and to OscarTheCatGotMeHere for those references.

We didn't know about cording until you mentioned it.

If they would just provide us with all the appropriate information and required intervention prior to and post-treatment there would be far fewer additional burdens to contend with, as we could take appropriate measures to prevent issues where possible.  I say we, because I also have what were avoidable issues following surgery.

It is unfortunate that we are left to do our own research and usually prompted by a manifestation of some problem.

We are happy to receive any other references with regard to breast lymphoedema massage that has been effective.

D

Hi Dedalus, good you have raised this thread. I was referred to my local lymphoedema service by my oncologist, after I raised the issue of my bigger treated breast at my post rads appt. It was also a bit pink and warm so they gave me antibiotics just in case there was an underlying infection. The lymphoedema nurse confirmed it was lymphoedema and I have since read that it can be a side effect of rads. The nurse recommended the following:

1. more supportive bra - I was wearing post op bras which were soft and comfy but not much support. She said full cup and full support, enough to lift and give cleavage! Even for me with only a B cup! 
2. basic massage under armpit and stroking towards other lymph nodes, away from the affected side. I don’t find these easy and was never sure I was doing them correctly so kind of gave up.

3. Nordic walking - I started straight away and haven’t stopped! Apparently the pole actions are ideal for getting lymph moving.

4. Swimming and/or aqua aerobics. I am no water baby but did get myself swimming for a while, but stopped after a skin infection and then Covid arrived. 
So Nordic walking and new bras have helped a lot, but it’s still there. I think the above keep it under control but it never feels ‘normal’. And the skin still ‘pits’ wherever there’s a seam. 
Re medics - I was referred back to my surgeon by my GP after a skin infection/ suspected cellulitis (treated with antibiotics) last year. The surgeon was completely dismissive, demanded to know why I thought I had lymphoedema, and said he considered that I’d had mastitis rather than a skin infection and had some breast inflammation ‘because the radiotherapy had done its job’!! Horrible experience, I scuttled away feeling like a fool. In retrospect I think he was very defensive, as if I’d accused him of causing it by his surgery. When in fact I’d stated that I thought it was a post rads effect. 
Anyway I know I’ve got oedema of some sort! Hence the larger breast, pitting and slightly orange peely appearance. I carry on with the Nordic walking myself and do zoom classes with my local group. I also joined the Lymphoedema Support Network, which is interesting but seems mainly to do with limbs rather than breasts.  
Hope your wife gets some resolution, it’s so horrible getting so little guidance. HFxx

Yes HappyFeet1, I joined the LSN but they mostly deal with limbs. Jobst advertise breast compression garments, and some others, Saw adverts in LSN magazine.

LSN can put you in touch with lymphoedema massage therapists ,  they have a list, but whether covid has stopped them I don’t know.

Thanks a lot, HappyFeet1, for that detailed reply.

Re your point 2.  It is difficult to determine what is the correct method.  Apparently, the BC nurse specialist was rather laissez-faire and perfunctory in her instruction, and it was only proferred upon request.   All the Youtube instruction appears to contradict her in terms of the direction of massage.  You really need to be given specialist instruction, but how to achieve that!  We also read you can do more damage by doing the massage incorrectly.  Apparently, Duncan Bannatyne's Health centres initially stopped doing massage on those who had experienced breast cancer because of this potential for damage.  The company has now certificated its staff, but would you trust such a certificate?

With regard to point 4.  Ever since a former colleague contacted a permanently resistant skin condition whilst swimming for exercise we both have avoided swimming pools and jacuzzis for decades.  We even avoid them whilst abroad and in a hot and sunny climate, when the pool is really inviting.  

Nordic walking seems appropriate.  We recently considered buying either a treadmill or eliptical machine.  In the end, we bought the treadmill.  Perhaps the elliptical would have been better.

My wife has been experimenting with different bras.

D x