Recently diagnosed with Lymphoedema following prostate cancer surgery

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Hello,

I wanted to ask how common it is for prostatectomy patients to develop lymphoedema? I was given loads of information before and after surgery about various common and less-common side effects but no-one mentioned lymphoedema until it happened. This isn't a complaint - I'm just curious to know if my situation is common or not.

My story is that I was diagnosed with prostate cancer following a biopsy in October 2019, and in December that year I had prostate surgery (with the Da Vinci robot). As well as removing the prostate the surgery removed 13 lymph nodes from my pelvic area, and they found cancerous cells in one of the lymph nodes. I started six months of Hormone Therapy at the end of March 2020, and in July and August I also had 6-and-a-half weeks of Radiotherapy (33 daily sessions).

Sometime around June I noticed some swelling around my right ankle, which I thought might be a side effect of treatment. When I started radiotherapy I mentioned it to the hospital team, and after it appeared to spread to most of my right leg, I was advised to speak to my GP, who referred me to an acute treatment unit where I had a doppler ultrasound scan to rule out the possibility of deep vein thrombosis. 

I was then referred to a specialist lymphoedema clinic, and I am currently waiting for compression stockings that have been ordered for me. All this has happened during the pandemic, and so many of my appointments and consultations have been by phone and video.

I understand that there is no curative treatment for lymphoedema and instead it is regarded as a long-term condition to be managed, which is not the brightest of news to be given.

I'd be interested in hearing about other people's experiences.

Many thanks

Angus (not my real name)

  • 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.