Renal cancer with lung mets

[Londonbug1]

Anyone got any experience of this???
So so grim

Yes, unfortunately. My DM was diagnosed in August 2013 with a massive tumour on her kidney (in fact, hae kidnet was all but consumed by it). She had a radical nephrectomy but there were already small mets to lungs. Now we're trying to get second line treatment which isn't simple as we're not in England. So shit.

Renal cell carcinoma has very variable course. Taking out the kidney tumour can lead to improvement of the metastasis. Chemotherapy may be offered and in a main kidney cancer centre there are likely to be trials running.
Has a nephrectomy been done?

Yes he had a nephrectomy five years ago
At the time the surgeons said they felt they removed all of the cancer and he did not need any further treatment other than follow up
It was at the five year check up the mets were discovered
He has now had two bouts of immunotherapy and is awaiting the outcome of this
My experience of lung mets is pretty grim but apparently the medics are bring reasonably positive
I just wondered what other peoples experience was really - hoping for good news stories really

That is a typical situation for renal cell carcinoma. It grows slowly and pops up when you don't expect it. Lung mets depend on the primary and the rate of growth. They can remain static for quite some time. Only the follow up act s can really tell you.

My DMiL was diagnosed about a year ago with stage 4 renal ca with bone and lung mets at time of diagnosis. She had a nephrectomy. Basically she's had minimal progression for a year - she tried taking a drug for about a week which she didn't tolerate so she doesn't take anything now. They're thinking about taking out the bone mets now to help her pain. This is just a really unpredictable cancer and I think that's been the worst thing for her - the sheer unpredictability is something she finds very stressful and traumatic.

My DM has Axitinib - she had to move for it - and it is definitely worth it. Although she has a pathological pelvic fracture the tumors themselves are currently under control. According to Macmillan the average effectiveness of the drug is 8 months, but for us, with two small DCs who I want to remember their granny, anything is a blessing.