Recently diagnosed with Lymphoedema following prostate cancer surgery

Hi Angus

I can't speak from experience of prostate cancer (mine was vulvar) but I did have lymph node removal and radiotherapy, and developed lymphoedema in both legs. I used compression tights, which helped a lot.

What I wanted to let you know, while I'm aware some people do have quite severe on-going problems with lymphoedema, you may find that as time goes on it settles down. I'm now 7 years down the line, very rarely feel the need to wear my tights, and as long as I get out for regular walks don't have problems with swelling.

Hi Seagull,

Thanks for your message, that's quite reassuring to hear.

Hi Angus,

I've had lymph nodes removed both sides of my groin and in my pelvis, and suffered a bit with lymphedema in my right leg.  My lower calves and ankle would be like Plasticine some days.

I started using normal compression socks and did more and more exercise and things started to improve.  As I removed more and more inflammatory foods from my diet, it got even better.  But the biggest change came a few weeks ago. 

From absolutely nowhere, all the scrotal/genital edema and the puffy right leg just disappeared.  It turned out that since my pelvic surgery I'd had a lymphocele in my pelvis, about the size of an orange.  On the last scan, it had dissipated all on its own and my body had worked out how to deal with the lymphatic fluid.

Jon

https://knob.blog

Hello Jon

Very kind of you to share your story (I also had a quick look at your blog - scary stuff). I have been wearing a compression stocking and cycling shorts (to try and compress the pubic area) for the last 5 months, the swelling has definitely gone down noticeably in my leg but it's still there.

But generally, I'm doing OK, and hoping for the best.

Angus (not my real name)

That's my pleasure - knob.blog is just my way of keeping track of everything that's going on!  But it's also a great resource for all the crazy things that might happen during cancer treatment.

Getting the lymphoedema under control is a daily mission for me, and it's certainly the most intensive part of my day now.  I have to be a lot more active, make a really conscious effort to keep weight down, and not eat many of the foods I used to like.

It's probably going to be a permanent thing.  For me, that's a price worth paying as I hate the heavy, achey legs, and it cuts down the risk of me having another round of cellulitis/sepsis too.

I wear sports compression tights now, and they seem to be doing a great job alongside the exercise.  Hopefully the stockings that your clinic give you make a real difference for you!

Best of luck,

Jon

https://knob.blog

There is a booklet you can download that Macmillan have. It helps to have the facts and understand what is lymph is all about. It's coming up to 14years since my cancer was removed with lymph nodes. It's very rare now that I suffer with lymph. When it starts it affects both my legs but I have learnt over the years that I can overcome it myself without using those stockings. Treat it quick and it goes away quick.