Hi,
My wife was diagnosed in August 2019 with cutaneous malignant melanoma (mole removed and biopsied in May 2019, my wife had been complaining about it since last autumn) at the junction between the shoulder and the neck (Breslow thickness 1.4mm, ulcerated, mitotic index 2.2mm/sq). She’s had a wide local excision, and sentinel nodes removal and biopsy (one node in the neck, one in the armpit) on 02 September. Late September the results came back, three deposits in the nodes (biggest one: 2mm). She’s had a whole-body CT scan on 06 October, the results, looked at quickly two weeks later, are a 5cm tumor in the left kidney and a 5mm tumor in the liver. Consultant said it was probably all fine, and nothing got done or even booked until yesterday (31 October) when the urology team decided the kidney tumor was quite likely a melanoma metastasis. She is now booked for a liver ultra-sound on 04 Oct and a kidney biopsy on 05 Oct. Two and a half years ago, she had an unrelated scan that showed both the kidney and liver to be clear. Kidney cancer, if it was not a melanoma met, is supposed to be slow growing.
The only person we have managed to talk to since yesterday’s ‘bad news’ is a nurse (not specialised in cancer), who said the biopsy results would take 10 days and then surgery would likely be booked with an additional 4 weeks waiting time.
Bizarrely, we still do not know whether she is BRAF positive, in spite of the fact that D+T would then become the consultant’s first choice if so (she agreed nivolumab would be dangerous to my wife given her history of auto-immune disease).
She’s been complaining of worsening symptoms for a few months: near-constant fever 37.6-38°C (sorry for the non-US units!) in spite of no infection, weight loss (8% of her body weight, she was a very slim 19.6 BMI to start with) with no appetite pretty much ever, kidney pain that seems to worsen, near-constant fatigue. All dismissed as non-cancer related and not worth investigating either.
Additional info: she’s 39, very susceptible to inflammatory / auto-immune issues, including her thyroid entirely non-functioning since her mid-twenties and a year-long severe auto-immune attacks to various organs. She’s got a family history of skin cancer (mum, and melanoma for her grandmother).
We live in the UK.
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The whole timeline seems absurdly slow to us, and especially the forecast timescale if kidney does turn out to be a metastasis. Does it sound reasonable to you people and / or in line with what you have experienced? Any advice?
Best wishes to everybody,
Jean
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