Transient or permanent lymphodema

Going through breast cancer treatment Lymphoedema
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Hi folks,
Looking for some advice please. I am 7 weeks post axillary node clearance and left mastectomy. The back of my hand has been intermittently tight from the get go. I was told to be on the lookout for this but when i rang physio dept maybe two weeks post op, i got the impression i was being overly dramatic. They offered to do “measurements” but as i had no swelling i couldn’t see the point.

Still concerned, i took myself off to a private clinic to get bioimpedance baseline at 4 weeks post op. My l-dex was 8.6 and despite getting some intermittent swelling around my 2nd and third knuckle at this stage, there was nothing on the day and she thought my post op status might have it artificially elevated.

The swelling became more frequent, still mild. I sent photos to surgeon who rang me back to say post op lymphodema at this stage is transient and to avoid repetitive movement, but that she couldnt see benfit in putting me through the hassle and discomfort of garment right now. Esp with radiotherapy to go.

In the last 5 days my hand has swollen further. I can no longer wear my wedding or engagement rings, both of which fit when i was 8kgs heavier at beginning of this year. I have lost definition between all my knuckles, the wrist is uncomfortably tight most of the time.

I want to treat this at stage 0 (possibly too late for that) if i can, hence the l-dex. I have contacted the private practitioner who advised a second baseline pre radio which is due to start in about 2 weeks.

I am really frustrated and worried. I see lots of conflicting advice such as no repetitive movements but strengthen your arm. Some people getting cording released and others saying leave it alone in case the lymph vessels becone patent again. Even the exs i was given post op said dont elevate above 90 degrees for a few days but brush your hair :unamused:. I was a physio myself for years and it reminds me of the worst of our profession. No context at all! Is my swimming repetitive movement, albeit good because of pressure of water? When does post op transient lymphodema become chronic (i saw a study using 12 weeks but i think that was more for clarity of conclusions rather than therapeutic benefit).

If you had asked me 5 months ago, i would happily live with a swollen arm to live. Now i am being greedy because i am entertaining the possibility of a longer life.

My neurosis about post mastectomy pain syndrome was, for me, unfounded. My neurosis about IBC was spot on and got me treated almost immediately. I would love to be wrong about this having plagued everyone as the “worried well” rather than be right and ignored my gut.

My question is, did anyone here have this transient swelling at my stage and did it settle without garments. Many thanks all xx

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Hello Jaffaboob. Sorry to hear you’re in so much discomfort. I had the same after the op 5 years ago, plus the cording and stiffness etc. The breast care nurse told me it was important to keep up with the exercises, gradually increasing how far the arm can be raised. Difficult but it worked and gradually improved within a few weeks.
I did get lymphedema after radiotherapy was finished, and still have a bit around the elbow and tricep area but it’s minor. Keep in touch with the lymph clinic because they are really good at trying different night and day sleeves and my most recent ones have made a big difference. Apparently the technology is improving all the time. I leave my day sleeve off from time to time, but not all the time as i want to keep it under control. I can wear my rings and my arm looks normal. Hope this helps. Take care.

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Thanks for sharing soos. V glad to hear you have been able to keep it well under control. I also know this is a luxury worry as far as cancer worries go.

I have great range in the shoulder, tight at full elevation but i’d get over that and the swimming has done wonders for me. Suppose im just worried as i havent even had rads yet and i dont get any sense of urgency to treat it because im only 7 weeks post op… despite anyone ive met who has gone through this saying to be on top of it asap. Still havent heard back privately or publicly. Will chase if nothing by close of business today. I think im just going to have to resort to the hassle factor but will keep you posted!

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You sound pretty positive and doing well. Sometimes it’s a waiting game but i trusted that the experts knew what they were doing. For me chemo started 3 months after op, then straight into radio. All these odd side effects are normal i think but still a worry when they happen. I chose not to read any of that thick file of info they gave me and just went with what they said. The best advice from breast nurse was just deal with what’s happening now and not what’s to come. Otherwise it’s just too overwhelming.
Look forward to hearing how you go on. Xx