Pelvic and groin lymph node removal

Hi Tinktoo, I’m wishing you good luck for tomorrow’s surgery. I read your profile as well, so sorry to see  your lymph nodes need this surgery but can fully see after watch and wait that you’d want it done now. I’m glad you haven’t long to wait now and I’m sure the team in the hospital will be able to answer all your questions on lymphoedema. 

I haven’t had the full dissection done myself, because my biopsy showed the immunotherapy I was already on was still working even though some nodes were enlarged for me they have also started shrinking. I wondered if no one else comes along with first hand experience wether this Macmillan section will be of help.

https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/lymphoedema/reducing-your-risk-of-lymphoedema

Best wishes

Hi Tink,

I'm sorry that you are having to have a node clearance. I had a groin & pelvic clearance 10 years ago and it's not easy to get over but it wasn't as bad as I feared. 

I had one drain - perhaps if I'd had 2 they wouldn't have been in for as long (they are removed once the drained lymph slows down to about 100ml a day if my memory serves me right). I was in hospital for two weeks because it wasn't slowing down & I started with cellulitis on Day 10. After 3 days of IV antibiotics I was allowed home with the drain out & a suction bag attached. This was removed a week later & I wore dressings for a while as I was still spotting lymph. I developed a seroma in my groin due to the calcified build up of lymph - it was drained once & then allowed to break down & slowly disappear on it's own (after about 8 months).

I also developed mild lymphoedema in my leg. These days you get much more information about how to prevent it - wear the surgical stockings they give you before your surgery & for a few weeks after. Keep your leg elevated when sitting down (higher than your heart if possible) and either put a pillow under your lower leg when in bed or heighten the end of the bed on bricks - this is to ensure the lymph flows along the leg towards the heart. Gentle self massage should be shown to you or be given in a leaflet to encourage the lymph to not block in the groin/pelvic area. It will eventually find a new route through the lymphatic system & hopefully you won't get lymphoedema. Don't stand still for too long - keep moving, if only gently or sit with your leg raised.

If you notice any swelling, contact your team immediately. Mine started to swell quickly & my team got me a referral to a lymphoedema nurse a week later - speed is of the essence to keep the condition mild. Compression tights/stockings will be ordered after your legs are measured & I wear mine every day. I've managed to keep mine mild & it doesn't bother me, other than being unable to kneel on that knee. If you would like more information take a look at this link https://www.lymphoedema.org/

Good luck and take it easy. 

Wow Grendo - thanks so much for your post. It’s always so good to hear about someone who’s had these things done and moved on with their life. I’m really happy that you are living your life to the full

how did they follow you up after the surgery?

am getting really nervous now but keen to get on with it

I had regular check ups - every 3 months for 2 years, 6 months for 3 years then annual checks. Aftercare is now different because of adjuvant drug treatment so you will have more regular checks and scans too. 

On a practical note, get some big knickers and either nighties or baggy pyjamas so that you have room for the drains. If they let you home with the drains in get yourself a large, cloth shoulder bag so the drain bags can fit in them and can be carried around easier.

You will get through this xx

Hi @Tinktoo, I had my groin lymph nodes removed, but not the pelvic ones, this time last year.

The drains were the most annoying part to be honest! I had 2, but they took one out quite quickly before I left hospital after 2-days I think, because it wasn’t doing anything. The other one was in for about 3-weeks in the end. I blogged about the whole thing quite a lot at the time if you want a read  - there are some pics in there too.

https://onedaywithoccasionalleaps.wordpress.com/2019/04/27/palpable-inguinal-melanoma-metastasis/

I’d say take a long handled soft bag into hospital with you for carrying the drains around, and get them to show you what to do if the drains get blocked before you leave. I had no mention of that and it was a recurring pain!

Best of luck for tomorrow, and don’t be scared of the painkillers afterwards - someone told me (a bit late in the day) that if you allow the pain pathways to become reinforced, you’re more likely to have longer term pain. Get them blocked! X