Sorry to hear you’ve got to go through this. It’s so worrying isn’t it. I had the same op Jan 2021. For the first 2-3 days it was very painful when I tried to lift my leg, and I had to take one step at a time going up or downstairs. I had a drain into my leg for nearly 3 weeks, although some people have one for a lot less. Advice I got from this site was to put it in a cloth bag with long handles so I could carry it over my shoulder. My biggest fear was getting lymohodema so I wore compression socks until the drain came out and after that I wore a stocking every day. Once I was able I started doing simple exercises to get my leg moving, and started physio after 4 weeks - arranged through my GP. I also asked my surgeon to refer me to the lymohodema nurses and started seeing them after 3 months. That was the best thing I did as they were able to give me advice and provide compression garments and lots of reassurance. Some people don’t get lymohodema but I do have it just below and above my knee and at the top of my leg. It’s only Level 1 and I’m doing all I can to stop it getting any worse. The nurses tell me I’m doing a great job at managing it, but it’s an every day effort. I was told I’d be ok after 2 weeks. Er no, I wasn’t ok for 5 weeks so don’t get stressed if it takes a while. It’s a big operation so be kind to yourself. I had counselling sessions through the cancer charity at my local hospital, and also spoke to lovely ladies at Macmillan and also Melanoma UK, as it took time to come to terms with everything. That helped me so much and I’m so grateful the help was there. They’re like angels. Now, apart from the Grade 1 lymohodema in my leg which is completely manageable, I’m back to normal and able to do everything I could before the op including yoga, Pilates and salsa. Look at a website called Pebble for reasonably priced and feminine compression garments (that’s assuming you’re a woman, though they have male wear too). I hope everything goes ok for you Santorini and I hope my experiences help you. When will you be having your operation? Take care.
Hi daffodil59. I’m a 62 year old wife and mum. Feeling really anxious is an understatement. Started in early December finding a lump in groin. Saw the doctor and he sent me for a two week referral for a n ultrasound scan . Two weeks after that I had another scan c t I think that one was.No moles or anything was found . On the 30th December was called in to see doctor who told me it wasn’t good. In the middle of January I had groin biopsy to see what they was going to treat me for because we didn’t know where it had come from . After biopsy they said they would need to do further tests at Christie’s. I saw an oncologist under cup while waiting . When results finally found it was melonoma an appointment was made for me to see plastic surgeon last Thursday when he told me I would have the groin dissection in two to three weeks I’m petrified. Thank you for your reply.
Hi Santorini, I have read your post as I too am due full lymph node clearance for unknown melanoma , I do not have the wealth of support others so graciously give on this site but maybe we can be support for each other . I know your anxieties completely but I don’t come on very often .
The mix of thoughts and feelings and emotions you’re feeling were the same for me too. I can only tell you what helped me and I’m sure others will chip in. I talked to 2 close friends, but then tried to stop as I didn’t want my problems to monotonise everything and wanted a bit of normality when with them or chatting on the phone. I tried not to talk about my fears with my children too as I felt so guilty for being ill and them having to look after me. The only person I opened up to fully was the counsellor through my hospital cancer charity. I had 6 sessions and cried solidly through the first 3. By the 6th I was chatting as normal, no tears and lots of laughter. I started Pembrolizumab adjuvant treatment after that. Being lucky not to have side effects has helped me get back to being me. I have one more to go. For me, I’ve come to terms with everything as much as I can. You will too, but take one step at a time and speak to a counsellor or someone who understands as it can really help. I’m the same age as you by the way, with 2 children both still living at home. Sending you lots of warm hugs and love. X
Hi Rescuem, It would be good to be able to try to support each other through this.Been going through all forums since start of the new year trying to get my head around all of this. Waiting seems forever. I will let you know when I get my date for the op. Thank you for the reply. Take care everybody.
Hi I had a WLE and groin lymph nodes removed last Oct , lymph nodes where taken out as a precaution, thankfully everything was all good . Out of the 2 ops I had at the same time the groin one was the worst in healing , I had a couple of fluid problems and infections but a couple of courses of antibiotics cleared it up . After 3 weeks of finding hard to walk because of the problems , I was back to normal. As for worrying about lymphoma depending how many they take out , you should be fine , I had 3 removed, and touch wood no problems . Hope this helps .
Hi Mrs BEJ,I’m due to have full lymph node clearance. I have seen the plastic surgeon last Friday I’m due to have this procedure done in the next two weeks.To be honest I am really worried. My pet scan showed it hadn’t spread thankfully..Can’t seem to think of anything else. Thank you for your reply. Take care.
Aww bless you.If it makes you feel any better it's very natural to be worried . Every time I visited the hospital , all I would do was ask a question, but found I couldn't get a answer , the normal thoughts , what are my chances of getting through this . But then I went for my pre op and happed to mentioned something for the nurse to say " I know where your going with this , if it helps I know a patient that had a full lymph node removal, he's absolutely fine and comes and sees me regular, and that was 20 years ago " she was the only person that gave me something to cling on to . Can I ask how old you are , I'm 49 ( was 48 when I found out ) thought my world had stopped, but after a couple of worrying weeks ( that's normal ) got my head together . I have found this forum very helpful, so please don't be afraid to ask any questions, I always say " a problem shared , is a problem halved x
