Just starting to watch their latest video.
I can't recall, do they usually lag between events and posting? I'm just noticing he said the biopsy was May 2nd and nephrectomy was May 9th. They posted the "going for a biopsy" on May 12th, so, they not only already knew the results of the biopsy when they posted it, but the nephrectomy was also already over with. So, this most recent video of May 19th was 10 days past the actual surgery.
I recall there were weeks' lag when they were going to visit their surrogate/cousin and Elsie's arrival and when they'd post about it. I'm just not recalling this lag during Jessica's medical journey.
Have they always had such a lag in turnaround time?
Happy the surgery went well and he is very comfortable with his medical team. Am interested in how
@Saydee interprets his results.
@suzeq I feel very sorry for them both. Both of them will now be having regular scans to check for recurrence. It's awful for both of them, especially now that they are a little family with Elsie.
3 recommendations I would make to brian.
Don't google RCC, the info and stats are completely out of date. Any paper/post prior to 2018 is out of date. Since 2018 the stats have improved thanks to immunotherapy which extends life for some patients (many still don't respond to immunotherapy though)
Data and Google suggest RCC is an old mans disease and this upsets me. It's not why I see with RCC patients and even RCC clinics. I agree that it affects more males than it does females, but it is no longer an older mans disease. It is patients of all ages.
2) Join the USA smart patient website. It's genuine RCC patients with clinicians on board. They sign post the best possible kidney cancer hospitals and treatment info is real time.
3) If I was brian I would ask my oncologist to be referred to the genetics clinic to have a look at mutations. With him having clear cell he may have VHL mutation, if so, there is a new treatment specific for those with the VHL mutation. Brian may have Von Hippel-Lindau syndrome.
After Brians had his tumour removed it will be sent to the path lab. From there they use the Fuhrman or ISUP/WHO grading system to give Brian an exact grade. If necrosis is present inside his tumour or if there is microvascular invasion, he will be moved from his current grade.
When the exact grade is known, he will be given a percentage chance of recurrence. Grade 3's are usually 40% chance of recurrence in the next 3 years.
Here in the UK grade 3 & 4's are often offered immunotherapy to try prevent a recurrence. Due to Brians age I do believe he would be offered 'adjuvent' immunotherapy. The UK started offering this to high risk patients following success from the RAMPART TRIAL. The belief is that high risk patients that have adjuvant immunotherapy for 1 year have less chance of a recurrence.
However, my husband had great success with an immunotherapy trial, he reached NED! Immunotherapy killed all of his tumours, but sadly RCC showed up again. It's a sneaky cancer. It mutates to evade attack from treatment and those mutations eventually become treatment resistant.
On a positive note: I know of a few middle aged patients that had stage 2/3 with high grades 3 and 4. They have remained NED for over 10 years since their nephrectomy.
On a negative note: I know of patients that have been NED for 10+ years but younger patients often end up on dialysis. Older patients can live fine with one kidney until they die. Younger RCC patients with one kidney often end up dialysis. Brian will need to look after his kidney. Look after his kidney function, control his blood pressure. Reduce protein intake because protein isn't good for RCC patients with one kidney.
Worldwide RCC researchers advise clinics to advise patients to stick with the rainbow diet or the colourful Mediterranean diet.
Drink lots of water to keep that kidney flushing. Reduce salt is absolutely necessary. One kidney as to do the work of 2 kidneys.
And no iburoprofen. Many anti inflammatory medications impact kidney function so GP's don't prescribe.
If Brian was older I wouldn't be concerned for him. His age concerns me, especially when RCC likes to come back. It tends to spread long before nephrectomy takes place and can take years to show itself. I saw some talk on a video, people discussing clean margins? Clean margins mean nothing. Tiffany a perfect example..... Clean margins after surgery but it was sat there in her lung quietly.
Only time will tell for Brian. Future CT scans. Adjuvent immunotherapy is available to UK patients 3 months after partial or full nephrectomy, I hope this is available in the USA.
Most nephrectomys are now done by keyhole surgery or robotics, his recovery will be quick. Some patients need a rib removed during surgery, others don't.
I understand now a bit more why his decline was so fast on the last 9 months of his life. I couldn't understand why treatment was minimal after a certain point but I get it now. It's a horrible thing to see.
Isn't it a cruel horrid disease!
