Melanoma - forehead

Hi  and a warm welcome to the online community

I'm sorry to read how much trouble your husband is having getting the tests he needs to see if the swollen lymph node in his neck is linked to the melanoma on his forehead. 

My melanoma was on my arm and I haven't had any swellings in my lymph nodes, touch wood, so don't have the exact experience that you're asking about.

However, I would definitely be speaking to PALS (Patient Advise and Liaison Service) at the hospital about the problems he is having in getting the necessary tests as they can liaise with the consultant to find out what's happening.

To be told in June 2020 that he had to wait 18 weeks is bad enough but now a year later he still hasn't had them is appalling, even taking into account Covid. PALS can help resolve the problems that your husband is experiencing and also give guidance on complaining. It is no wonder that you are worried sick and feel that you are constantly chasing up his appointments.

Do come back and let us know how you get on 

x

Hi I’m so sorry to hear how worried you are and how things haven’t gone right for you. I understand that everyone has a key worker with the NHS it’s usually your skin cancer nurse and they should be your first point of contact and liaise with anyone else at the hospital for you. When I’ve been concerned about not having a scan date, or results being late, or a difference of opinion between oncology and surgery it’s always been the nurses that I’ve rung, they have spoken to the necessary department and fed back to me. It sounds like you are getting conflicting versions, but it’s not how it went wrong that is the priority it’s how to put it right. I think your husband with you beside him should ring the nurse back, explain how concerned you are and ask the nurse if she can liaise to get the biopsy done ASAP, you should also ask about pals and making a complaint as in my experience this can then speed the complaint being solved before pals get involved. 

My lymph nodes that are affected are in my groin, mine seem to fluctuate on every scan at the moment, 2 go down, 2 stay the same and 2 increase, so the fact his lymph node is enlarged may or may not be a worry. You mention it’s swollen 5mm, I’m not clear if you mean it’s 5mm bigger than it was or if it’s now 5mm. My groin nodes are usually around 8mm and when they are reported on as being over 10mm that’s when a concern is raised, but as I say they are not in my neck, I don’t know if the size in a different place is significant. Your nurse should be able to explain what they feel is a concern, or if they are taking action early because a patient is concerned. My nodes at the moment touch wood are hopefully doing their job and are containing and fighting the melanoma but have grown to about 24mm  (Im on immunotherapy Pembrolizumab which is helping my body fight things), I’m awaiting scan results due on Wednesday when I’ll know if they need to take additional action or can wait things out until the next scan, like they have done before.

It’s not easy being in a limbo state, and it sounds like that’s how you’ve felt with all the waiting and things. I hope your husband can sort things with his nurse or with PALS with your help. Headaches can be just because of stress, and nodes can increase due to infection, a recent covid jab perhaps, or fighting any cancer before they subside I hope the NHS can earn your trust back and give you the support you both need, and I hope you can encourage them to help you. Most medical professionals want to help and would respond to that approach, I know they are also working hard but also have less capacity due to social distancing, and have some tough decisions on prioritising to do as well. I too would love to hear how you get on. 

Hi

Many thanks for your reply.  I called the hospital on Friday to see if his scan had been upgraded to Urgent, thankfully it had so they offered me an appointment 0930 30 jun.  We are actually away as our twins are 21 on 29th, but we must take this appointment next one would be late July, will just result in an early night to travel to hospital from where we will be stay actioning.  Will keep you posted 

Hi

How are you and your husband doing? I wondered if your husband had had the results of his scan yet?

x

Hi. He had the ultra sound but she said it looks fine so she didn't do a biopsy.

I wish she had. That would have been closure but still feel in same place, worried. 

KFC