Hi this is my first post. Following WLE and SLNB on 3/5/22 on the inside of my left knee I am still experiencing pain and tightness and am unable to bend knee. I had a skin flap done at the time to cover the hole! Have follow up and results appointment on Monday but just wondered if anyone else had experienced similar and if normal after 16 days. SCN said nerve damage / healing process. The WLE itself is not bothering me but the whole of my knee is warm to touch / tender and skin feels weird. Anyone had similar experience?
Hi Natsqui and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
As my melanoma was on my arm and my SLNB was in my armpit I don't have direct experience to share with you but I noticed that your post hadn't had any replies yet. It probably took about 2 weeks for me to get the full range of movement back in my arm after my surgery but considerably longer for the numb feelings that I experienced at the wound sites to go.
Make sure you mention how your knee, etc is feeling when you go for your appointment on Monday. I'll be keeping everything crossed that your results are good.
Hi Latchbrook thank you for your warm welcome and reply to my question. I am hoping that is all normal healing process as you experienced too and will mention at my appointment on Monday. I guess I am looking for reassurance prior to that as leg does feel very “heavy” too. Thank you and will update on Monday x
I'm sorry to hear that Natsqui. I didn't realise that there was a size below which immunotherapy wasn't offered. let us know how your CT scan goes.
Hi Natsqui and welcome to this lovely group of people. I'm sorry to hear about your lymph node having 0.6 mm of spread. Have you been given a "staging" number and letter? I've also never heard of immunotherapy being determined by amount of cancerous cells in the node. I was staged at 3c and am nearing the end of my year of immunotherapy (Pembro).
I believed that if the disease had spread to the lymph gland at all then immunotherapy would be given. I might be inclined to seek more advice from your specialist re this plus talk to the Macmillan team too. "NICE" which is the governing body covering "best practice" for all doctors and nurses for all treatments is worth having a look at too as it may indicate if there is a level of lymph node infiltration that dictates treatment with immunotherapy. I know that Stage 3 melanoma has only been offered immunotherapy in the last few years and it seems that in order for lymph spread to happen then the depth of the melanoma must reach a certain level beyond the epidermis to enter the lymphatic system therefore I would have thought any cells in the lymph node indicate treatment is needed. I like logic, it has no grey areas.
Sorry if my reply worries you at all hon, that's not my intention but after spending time on this site and one other I was led to believe lymph infiltration means you have treatment and I would feel terrible if I'd not spoken up. Please search for some more advice before accepting the outcome your specialist has given you. I'm actually going to have a search now myself. I hope that I'm wrong and that your recommended treatment is correct hon.
Take care xxx
Hi Alottment Lover thank you for your lovely welcome. I have now spoken to my SCN, as she was not at the appointment yesterday, and she advised now Stage 3A. She confirmed what consultant said yesterday that as in one node and now that node has been taken out, weighing up the unlikelihood of spread and side effects of any further treatment they do not offer / feel would be beneficial and as stated will get regular CT scans going forward as a higher watch option. I feel happier having spoken to her now, was a bit of a shock yesterday as really didn’t think it was going to be found in node! I will though do a bit more research as you suggest and if you find anything please do let me know x
Hi have since been referred to oncologist who I saw last Wednesday and have results of CT scan which thankfully was clear. I have now been told that treatment is open to me because of Stage 3 so now have to decide whether to 1) watch and wait 2) targeted therapy with DAB / Tram as Braf positive or 3) immunotherapy. Really struggling as part of me wants to not have any further treatment and get on with life (with checkups) but so scared that’s the wrong choice as all the way along I have been told “not likely to be melanoma or spread” but each time it is the worst news. Any advice gratefully received
Hello Natsqui, I am glad to hear that your CT scan was clear, and understand how difficult it is to make treatment decisions. I wouldn’t dream of advising you one way or another but thought I would pass on my experience in case that helps. I am not Braf positive, so targeted therapy has never been an option for me and I don’t know anything about it.
Like you, I had one lymph node affected and a clear CT scan. I couldn’t bear the thought of doing nothing, so my instinct was to go for immunotherapy rather than watch and wait. The most useful thing I did was to have some very clear questions for my oncologist to establish some facts - I have found over time that he is reluctant to offer advice but will always answer fully anything that I ask him. For example, the chances of recurrence with/ without treatment, the chances of success of treatment etc. He has always been able to give me a rough percentage for all of these. With hindsight, I think it is always worth asking if making a particular choice might reduce options in future. Your nurse might also be able to answer questions like this, though I’m not sure mine would.
In the end, I did have the immunotherapy, 1 year of Nivolumab. I was able to carry on working and didn’t have any side effects other than tiredness, so I was able to put it all to the back of my mind at least some of the time.The rest of my history is on my profile.
I hope this doesn’t add to your confusion! Good luck with the decision-making, and take care. Xx
Hi Rosie01, thank you so much for your reply it has helped in making my decision. I have decided on immunotherapy and should start in a couple of weeks. Like you in the end I couldn’t accept not taking action. I’m sorry to see you have had recurrences and am glad it is showing some improvement, long may it continue. Take care