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?

A 2017 research paper, following almost 1000 people over 10 years, found a 41% incidence. Obesity, seroma (we still cling to the orthodoxy in Australia that lymphoedema and seromas are not related), chemo infusions in the affected arm and advanced disease all increase risk according to this study. OK, it's only one study, but what is well known and seems to me to be particularly unkind, is that lymphoedema can occur up to 15 years after treatment. Not rare and lurking!!

Great topic @Sister . I'm like you @Afraser with the don't get me started. lymphedema was barely mentioned to me with just a cursory don't have BP's and blood tests on that arm. I admit I got a bit complacent after my first diagnosis as had none. However half way through treatment for recurrence she reared her ugly head. My BS was still in denial that I Had it and would ask me why I was still wearing a sleeve and it would get better. It was my PS who I went and saw down the track to discuss reconstruction with who said I was a sitting duck for lymphedema after a lumpectomy with 6 nodes removed followed by chemo and radiation and then more nodes and chemo after second diagnosis. A radiographer who has since left town said we all should have had baseline measures. Clearly from the responses there is inconsistency around the country. I for one think we all should have one.Paula xx

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.

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/

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.

Baseline Measurement for Lymphoedema

Blossom1961
Member
7 years ago
@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.
Afraser
Member
7 years ago
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🙂.
Glemmis
Member
7 years ago
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.
Kiwi_Angel
Member
7 years ago
@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!

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