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My Annus Horribilis (part 2)

Posted 31 Jul 2017 at 09:34

Well, hasn't this site changed?  I am guilty of being one of the ones who drifted away from posting etc, after successful surgery and in fact it's been nearly 4 years since I updated my own story, which is now in the 'old posts - read only' section here My Annus Horribilis Part 1.

So what brings me back? Well, I was simply looking for a little information on an annoying problem, that I believe is linked to my surgery and found my old log-in wouldn't work. So, if I am going to regain access, then I should also bring my own experience up to date, while seeing if anyone else has experienced my problem! 

First the updates:

October 2015 and the annual review with my consultant.  Great news as I am no longer required to attend his clinic as my PSA was once again undetectable. In future an annual blood test with my own GP is all that is required.  My general health is good although I could do with losing a bit of weight!! I am still not 100% happy with my ability to gain an erection and don't enjoy the redness in the face etc that comes from taking Viagra, but hey ho!

October 2016  Blood test results still still good but while at the doctors, I mention that I am noticing that I am seeing swelling in my lower legs and ankles, particularly my right one.  She asked how long this has been happening, but to be honest, I hadn't really any idea.  It could have been 'creeping up' for years as far as I am able to say. She agrees to investigate the cause and I asked if it could be anything to do with my radical open prostatectomy and the removal of 2 lymph glands.  Her reply was that it couldn't be ruled out.

November 2016  More blood tests (nothing found) and an appointment to attend a 'full bladder' ultrasound scan to rule out any problems in my abdomen.  Sat in waiting room feeling very uncomfortable and at 15 minutes after my appointment time I was told that the ultrasound operator was unwell and a new appointment would have to be made! Now where is the toilet......

January 2017  Back again with the old full bladder, only this time, the scan goes ahead.  Informed by my doctor, 2 weeks later that it didn't show anything, so she was now sending me for an ECG, as heart problems can cause swelling in limbs.  Lovely, I thought, just what I need.

February/March 2017  ECG showed my heart was still where it should be and working quite nicely, thank you. Phew! Next was a 24 hour BP monitor, as my blood pressure was higher than expected.  White coat syndrome, I said, and after an uncomfortable 24 hours of inflating cuffs and beeping devices, she agreed. Then she added that just to tick another box, in the diagnosis process, she was going to refer me to a vascular consultant.

May 2017  Appointment with vascular consultant came through for August 4th.  Now I am really noticing the swelling and find a couple of pairs of shoes are becoming uncomfortable.

July 2017  Bl**dy NHS. Appointment with vascular guy cancelled and rescheduled for October! Not happy and currently waiting for my GP to return from holiday so I can discuss with her.  This is when I decide to see if anyone else has had similar issues, post surgery, so here I am again.

There we have it. So, if anyone has suffered lower leg swelling following a prostatectomy, I would love to know and especially keen to hear about solutions etc.  My GP suggested compression stocking at which I think the look on my face said it all to her.  Apart from when I am visiting clients, I usually spend as much time as possible, from April to October in shorts and sandals, so having to wear 'Nora Batty's' is not really on for me.  And if anyone wants to ask anything about my journey to here following my original prostate cancer diagnosis, simply get in touch



Posted 31 Jul 2017 at 11:31

Lymph odema is actually quite common after RP which is why some surgeons only remove lymph nodes if they look suspicious. Ask the GP whether there is anything in your notes about how many lymph nodes were actually removed and then ask for a referral to a lymphodema clinic (if your area has one) but in reality, compression stockings or odema massage are the likely treatment options.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
Posted 31 Jul 2017 at 11:49

Hi Lyn,

2 lymphs were removed, however not because they displayed any evidence of a problem, but because my surgeon felt it gave better access. I suppose, in reality, I am looking for the proverbial 'magic pill' with regards to the lymphodema!

Thanks for replying

Posted 31 Jul 2017 at 15:51

Steve, what you have is common. I had a bladder and prostate and 18 (I think) lymph nodes removed four years ago. The lymph nodes were removed so that they could be checked for cancer and were all clear. Perhaps one day they will be able to check them without inflicting such damage.

I was referred to a lymphoedema nurse specialist and had a massage. Brings about ten minutes relief! Also supplied with the Nora Batty stockings. They might have stayed up had I less meaty thighs, but ones like mine will be seen in many a Rugger scrum so the stockings ended up supporting only my ankles. Other advice was to elevate my legs, ie, above the heart. I do try, when it is practicable, but think about it, how much time in the day can you spend like this?

To wrap up what I wish could be helpful advice, I fear that there will be little done for you.

Now a warning: should you need chemotherapy at some stage, one common side effect is fluid retention, especially after five or six cycles, so I have that on top of the damned lymphoedema. It is the same thing really, an impaired lymphatic system can't clear excess fluid through the kidneys in the usual way, so the fluid gathers from the waist downwards. Makes wearing shorts in the summer a bit of a problem and one's running days are over...

If you find some advice which helps, do broadcast it please, please, please..


Posted 01 Aug 2017 at 09:04

Hmmm. Not, perhaps the 'confirmation' I was hoping for. The swelling in my right calf/ankle/foot stopped me riding a motorcycle trial at the weekend as I couldn't get one of my boots done up! And thats with very strong over-centre type buckles.

I totally agree with your view, Auld Codger, on elevating legs. I tried to do so, last night while trying to watch TV. I think I managed 10 minutes undisturbed, and ended up realising that most evenings I must be doing the human equivalent of being a yo-yo. That's the trouble with dog ownership. I have 3 and there is always one that needs to be let out

Anyway, I have now got an appointment with my GP on 15/8 so will see what she has to say now, as well as still look for 'magic pill'!!

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