Baseline Measurement for Lymphoedema

Sister

Due to cording issues, I see a specialist physio on a reasonably regular basis.  The clinic treats cancer survivors and obviously, lymphoedema issues.  Last visit, the physio decided it was time to measure and scan me again for any swelling in the arm.  My scan came out high (but it's a new machine so possibly that could be a factor) while my measurement came out low.  I'll be getting it checked again at the next visit.  Unfortunately, I have no baseline from before surgery to compare to.  I asked the physio if this shouldn't be done for everyone before surgery and her comment was that it should be but never is.

My question is: has anyone had a baseline measurement done before surgery?

I'm curious as lymphoedema can be such a problem so it would seem to make sense to be able to recognise it before it gets bad.

Is this just another area of "after" that is not considered?

Kiwi Angel

@Sister I definitely ever got any measuring done pre surgery. It was only when it developed due to chemo (thank god it has receded). It should definitely be done. I saw my breastcare nurse for the first time while I was in the admissions area for surgery - possibly that is something that she could do prior to surgery. There are so many afterthoughts!

Glemmis

Hi @sister, I developed lymphodema during chemo & luckily already had the name of a specialised physio It subsided but redeveloped again & now are in the process of buying my sixth sleeve with half a hand glove.  She is still hopeful of getting it back down but without knowing what my baseline is it is difficult.  It was never mentioned to me but I think too it could be part of preadmisdion checkup whether private or public. 

Afraser

Don't start me on the head in the sand attitude to lymphoedema. If it's mentioned before surgery at all, it's often cast as some sort of bogeyman, which scares people from any further action or research. You have a relatively high chance of getting it with lymph removal, particularly axillary clearance but I have filled in many research questionnaires where it's not even referred to as a side effect - sure it's not as common as nausea or fatigue, but it may be with you for life. Assistance for therapy, compression garments etc can be widely variable across the country and most GPs know little about it. I don't regret my surgery at all and I have adapted to life with lymphoedema pretty well, but I have also seen people wait way too long for treatment, mainly because of lack of knowledge or do without aids that would greatly improve their quality of life because of cost. I'll be quiet now🙂. 

Blossom1961

@Afraser “I’ll be quiet now” WHY? Admittedly, no one listens to our noise, but that is no reason to be quiet. One of these days they will get tired of hearing us and actually listen instead. Gripe away.

tigerbeth

Yes I had a baseline done before surgery (public)

Afraser

@tigerbeth, excellent. @Blossom1961 I do talk, write and support professional lymphoedema therapists who have had a couple of hard won wins lately. Asking for a baseline test pre surgery would be good too. 

Blossom1961

@Afraser You go girl! It appears that any win in the BC world is a hard slog to get there

kezmusc

No baseline beforehand over here. 

 However it was high on the list of what to look out for. If I remember correctly there was bit about it on the risks side of the consent form.  I  got a big lecture from the physio day 2 after surgery, a two page information sheet on what to/ not to do and another on the exercises. Both breast care nurses tried to give me a copy as well, but the physio had beat them to it.

  I had some kind of scan thingy when I went for my first physio clinic appointment I think that was about two weeks post op and all was good. Two more physio sessions after that to sort out the cording, another lecture about the importance of exercise, exercise, exercise. It was mentioned again by the surgeon and BCN at my first couple of surg reviews as well.

So I would say I was well and truly informed.  

xoxoxox

kmakm

It is on the list of BCNA lobbying priorities this year. I say go for it loud and hard, make as much noise as possible.

https://www.bcna.org.au/about-us/advocacy/

Blossom1961

No baseline beforehand. Surgeon considered it irrelevant. BC nurse booked me into Lymph Physio two months after surgery and told me they would answer any questions I had. You lovelies sorted me out and then I got the best Lymph Physio ever. She did measurements straight away so she had something to go on but as I had been doing everything you lovelies told me to, I was okay.

SoldierCrab

I had baselines done at Westmead before my surgery ladies 

lrb_03

I had chemo before my surgery, and had to push for contact with a BC nurse. Having said that, when I finally did see her, she suggested I should see a lymphoedema physio before surgery for baseline measurements.  The best thing she could have done! I did have to go to a private therapist, as there was no way that I would have been seen in the public lymphoedema clinic in time.
At about 4 weeks post surgery, I saw her and happened to mention something about a general achiness in my arm. She immediately suggested that I make another appointment as soon as possible for another measurement. At that appointment 2 weeks later, I'd gone from 0.5cm difference in arm measurments,  to a 7cm difference.  I went in to my first sleeve that day. I have since moved on to custom made garments. It's simply part of my life. With the garments and regular lymphatic massage, my arm has remained stable for the last 3 years

Afraser

I was about 5 months post surgery when I noticed my wristwatch band was tight. No ache or discomfort, never have had any. Like@Irb_03, compression garments, massage and exercise keep my arm stable (nearly 6 years). It's a relatively easy adjustment to make to keep life normal. 

Silba

 Had a baseline done before started Chemo , then regularly check after surgery, radio and post treatment every 6 weeks or so , have cording in left armpit and my readings are slowly climbing but physio thinks due to bad radio burns , just keep massaging, have good days and bad days , all with in  in the last 12 months since I was diagnosed.

pammiesyd

I didn’t get a baseline measurement before surgery. I realised that something was wrong with my arm when I developed an enlarged area in my arm. This was 6 years after surgery.