Hi, my husband has was diagnosed with stage 2b 4.1mm melanoma in February. Hes 45. I'm really struggling with conflicting information we are recieiving. He had a ct scan 3 weeks ago and we recently met with the plastic surgeon. He advised that they had detected 4 small nodules on his lungs and 2 on his liver. He advised, due to the seriousness of this we would get an appointment with the oncologist no later than this week to go over a treatment plan and get additional support. He mentioned that in his experience the nodules would be linked to the melanoma but were too small to biopsy. He said he would now not perform the lymph node biopsy along with the wide local incision (which will be in a couple of weeks) He also mentioned starting immunotherapy. He also said they just didn't know whether to " stick or twist" with his case. This was a little upsetting because its not a card game he's playing.
We contacted oncology today and were told no appointment had been made for my husband and that the plan was to wait 2-3 months to see if the nodules grow.
I feel confused and don't understand why they would wait if they feel that it is such high risk for it having metastasized. We have never spoken to an oncologist to answer any of our questions and I feel like we have been left in limbo with nothing but Google to help us understand.
Any support or advice would be greatly appreciated.
Unfortunately that seems to be quite usual , little or no Information, and convoluted referral systems, I was also diagnosed in Feb, primary under toe nail and groin nodule involved, going for op o Tuesday next , communication and apps only started to happen once I did a PALS complaint, I am a nurse andI am tired from having to self advocate, do you know who your loxal McMillian nurse is?
Thank you so much for your reply.
I have no idea who our local macmillan nurse is.
Throughout the whole process we have been misinformed and given conflicting information. It's very disheartening.
It does seem to be that way a lot , I found mcmillan useful, maybe ring the Hospital you are under an ask do they have a cancer specialist Nurse, I wrote an email with all my concerns on poor communication etc ad sent it to PALS it worked, I hope things get easier the anxiety is hard to handle ,
Hi, I too was diagnosed with melanoma 2b had a wle & slnb which came back clear however 6 months later ct scan showed small nodule on lung and one on liver. It turned out to be a cyst on my liver and after a pet scan and referral to lung specialist it was decided to scan again in 3 months re the lung nodule. Ct scan 3 months later showed lung nodule had grown and there were 2 more so I am now on immunotherapy. I would push for a pet scan that would show if the nodules in the lungs and liver are active.
if I were you I’d chase up with the plastic surgeon ask for the name of the oncologist and try and get an appointment.
Thanks for your responce. We are being told that the nodules are too small to analyse (3mm, biggest 6mm)
I appreciate your advice, I will call first thing tomorrow and hopefully get somewhere.
Wishing you well.
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