Hi,
I'm out of my mind with worry.
Husband (58) noticed a lump in his groin back in Aug last year. A bit of to ing and fro ing and he had a CT scan in November and a biopsy mid Dec.
The surgeon said he'd ring with the results Christmas week,or 1st week of Jan.
First week of Jan no phonecall, but a letter for an appointment on 7th Feb with the same surgeon.
We assumed it wasn't anything serious as the appointment was so far away (but in the meanwhile the lump has got bigger and is pressing on a nerve)
Arrived at said appointment and the surgeon asked what we were doing there and how was the treatment going.
We said no one had contacted us.It appears it was handed over to the MDT team,but never acted upon.
He mumbled something about cancer/lymph nodes/lungs and told us to go home and he'd call us that evening.
No phone call came,so I spent all Thursday trying to get his meducalll notes and managed to get him a face to face appointment with a GP.
Our GP is saying tte same thing, its all in his file, its been there since 22nd Dec,but no one has contacted us and he doesn't know why.
I got home and started Googleing the big words (never a goid idea) he has metatastic melanoma, so it's moving around, it's in his lymph nodules, the iliac vessels and his lungs (he had what we thought was Covid 2 weeks ago, but we thought it strange I didn't get it) it's left him breathless with a hacking cough, so suspect its well and truly on his lungs now.
Tte surgeon we saw last week said someone one should ge in in touch the middle of this coming week, and our GP said he'll chase it up.
There doesn't seem to be any sense of urgency at all.
I'm at a total loss, we are dealing with a complete breakdown in communications as well as a diagnosis we don't understand.
Can anyone give any help please.
Thank you.x
Hi Verdegris Patina and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I'm sorry to read about the breakdown in communications between the consultant and your husband and it must be an extremely worrying and exasperating time.
Your husband should have been allocated a SCNS (skin cancer nurse specialist), sometimes referred to as a key worker or Macmillan nurse, who act as a point of contact between the patient and consultant. I'd recommend that your husband gives the SCNS a call on Monday morning and she should be able to see what's happening. If your husband doesn't have the SCNS's details he could phone his consultant's secretary and she should be able to give him the contact details.
If this doesn't get him anywhere then he may need to involve PALS (Patient Advise and Liaison Service) part of whose job is to help resolve problems when using the NHS. Every hospital has a PALS department and he can ask to be put through from the main switchboard.
The online community is divided into different support forums so can I recommend that you join us over in the melanoma forum as you'll then connect directly with others with this type of cancer. There you can ask questions, share experiences and get support.
To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be really helpful if you could put something about your husband's diagnosis, tests, etc into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
I'll look out for you in the melanoma forum
Anne
"Never regret a day in your life, good days give you happiness, bad days give you experience"
