Krocks In The Kitchen

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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Don't google RCC, the info and stats are completely out of date. Any paper/post prior to 2018 is out of date.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.
 
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They are pretty timely in their videos. That biopsy result took much longer than expected and then surgery was next day...I think they probably intended to do a results on biopsy video but did not have any and then recovery from surgery. Considering what they are juggling I can understand if timing is not perfect.
Thanks for that. That's the difficult thing about feeling a connection to a YT life story, you wait anxiously for news. It is a reminder not to feel invested when you realise that what you've been waiting to hear is news that is actually long past, it just hasn't been shared yet. I should have learned that from TT. I appreciate that the Krocks don't need a lot of editing at least. No clickbait cliffhangers either.


I hope Brian doesn't have a recurrence after his nephrectomy. Life with just one kidney will mean he needs to look after it.
Sadly I see so many younger people with RCC have a recurrence a few years down the line. RCC is very sneaky type of cancer.

I'm not excited about the fact that he may be stage 1. His prognosis will depend on if there's been microvascular invasion, if the tumour can be removed with clear margins, where about the tumour is sitting (which pole), how close the tumour is to the renal vein. The biopsy states clear cell RCC , but the tumour itself may contain papillary cells as well as clear cell.

My husband was grade 3 too.
It's a sneaky cancer. Why is RCC sneaky? There's no markers for this cancer, it doesn't show in blood tests. Many patients don't show any symptoms at all. RCC is resistant to chemotherapy and radiotherapy. Treatment is immunotherapy or tyrosine kinase inhibitors (tablets taken daily but the cancer becomes resistant to tki's quickly). It often takes years for metastatic spread to show up on scans because it's a slow growing cancer with slow dividing cells.
Many patients (even stage 1, grade 1's) can be living their life after nephrectomy feeling they have been cured, and bam 4 - 5 years down the line a lung nodule or bone met appears, despite them having clear margins.

I hope Brian's oncologist will look into mutations. Personally, I think doing a biopsy was too much of a risk. Biopsies carry risks of seeding. Oncologists say that there's only a slim risk of seeding @ 1%, but someone is that 1%. If the tumour/mass had to come out anyway, it would have been sent to the pathology lab.
@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.
Such great information you share @Saydee , you are sadly such an expert on this topic now. I have actually shared that smart patients website with someone, thank you for putting it out there some time ago. I had no idea I might ever need it, but it came to pass that an acquaintance of mine was diagnosed with cancer. I felt helpless and could only offer that portal that you had shared here and I had saved for no particular reason. It came in handy sooner than I had imagined. Thank you for giving so freely of your knowledge; I have quoted your posts so I can find them easily in my own history here.

You must be so helpful to those only just receiving a diagnosis, you could save someone so much time and confusion. If I were diagnosed with cancer, I would want contact with someone like you ASAP to help me navigate my way through. You are a wealth of knowledge.

If there are no tumour markers, so someone has to go for ongoing scans (of their entire body??) to maintain vigilence for metastases elsewhere? "NED" must bring cold comfort to patients, it unfortunately must bring a false sense of security to many.

He is 10 days post-surgery, is it unusual that he is still in a lot of pain? Of course, I don't know when this video was actually filmed...

Thank you for so much information. I hope you and your family are doing well. I really hope the Krocks peek in here and find your invaluable posts or others in need may stumble upon them.

Some patients need a rib removed during surgery, others don't.
Oh my! :oops:
 
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Thanks for that. That's the difficult thing about feeling a connection to a YT life story, you wait anxiously for news. It is a reminder not to feel invested when you realise that what you've been waiting to hear is news that is actually long past, it just hasn't been shared yet. I should have learned that from TT. I appreciate that the Krocks don't need a lot of editing at least. No clickbait cliffhangers either.






Such great information you share @Saydee , you are sadly such an expert on this topic now. I have actually shared that smart patients website with someone, thank you for putting it out there some time ago. I had no idea I might ever need it, but it came to pass that an acquaintance of mine was diagnosed with cancer. I felt helpless and could only offer that portal that you had shared here and I had saved for no particular reason. It came in handy sooner than I had imagined. Thank you for giving so freely of your knowledge; I have quoted your posts so I can find them easily in my own history here.

You must be so helpful to those only just receiving a diagnosis, you could save someone so much time and confusion. If I were diagnosed with cancer, I would want contact with someone like you ASAP to help me navigate my way through. You are a wealth of knowledge.

If there are no tumour markers, so someone has to go for ongoing scans (of their entire body??) to maintain vigilence for metastases elsewhere? "NED" must bring cold comfort to patients, it unfortunately must bring a false sense of security to many.

He is 10 days post-surgery, is it unusual that he is still in a lot of pain? Of course, I don't know when this video was actually filmed...

Thank you for so much information. I hope you and your family are doing well. I really hope the Krocks peek in here and find your invaluable posts or others in need may stumble upon them.



Oh my! :oops:
Without giving too much away, I do volunteer work involving RCC. Yes no tumour markers for RCC. It used to be CT scans for 5 years but recently younger patients have been moved to 10 years. CT scans are standard Chest, Abdomen & Pelvis with contrast dye if their remaining kidney can tolerate contrast dye. Kidney function is checked before contrast is given. (Another reason for looking after the remaining kidney!) RCC does spread to the brain but unless a patient is showing concerning symptoms (slurred speech, headaches, limp) they don’t routinely scan the head. Usually it would spread to the lungs and neck lymph nodes before spreading to the brain.
Scan frequency is usually 3 monthly for a year, then 6 monthly for 2 years, then annually. If a patient presents with any symptoms or concerns, scans can be given sooner. At the 10 year point patients are discharged. Although I would insist on a private scan annually! Recently I met a man that had his kidney removed 17 years ago. He moved to South Africa to work and felt breathless on inclines. CT scan showed recurrence after 17 years but it’s widespread. His oncologist says it’s bee growing for a few years. RCC is often very slow growing averaging 1cm per year, but it’s quite resistant to treatments and becomes more aggressive the more that it spreads.
Pain after nephrectomy is very common. Most patients prefer to sleeper in a recliner for a few weeks because sleeping flat is very difficult. Also hugging a cushion or pillow when coughing. It is wise to get walking asap after surgery to reduce the risk of DVT, but to walk slowly. No heavy lifting for 6 weeks. Pain can be caused by constipation too due to the bowel being handled during surgery. A sensation many RCC patients experience is feeling a shaky movement internally. It is actually the bowel having more room to move! It can occupy the space where the kidney used to be.
Adrenal glands sit at the very top of our kidneys. Some surgeons remove the kidney with the adrenal gland and others preserve the adrenal gland and leave it behind. For those patients that lose the adrenal gland, they can feel fatigue due to the reduction in cortisol.
I imagine life for Brian feeling very strange. A carer/advocate and now he is the patient? 🙁
 
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@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.
Excellent review and report our dear @Saydee 💝
Thank you!
My first conversation with Brian would involve a big statement about being big and large and how detrimental that is on your body, more specifically heart and kidney (singular)
I’m not sure about their diet, but it certainly needs some review too!

Hopefully this is the beginning of change 👌🏼
 
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A sensation many RCC patients experience is feeling a shaky movement internally. It is actually the bowel having more room to move! It can occupy the space where the kidney used to be.
Wow, if that happens just from the extra space from missing a kidney, I wonder what kind of shaky movement one must feel after a PE surgery and all that extra space then! I wonder if something similar happens after a hysterectomy? Fascinating tidbit!

All I recall from my uni days is that the adrenal glands are involved in the regulation of the three "S's": salt, sex, and I forget the 3rd one. Will have to look it up again now (just looked it up: sugar). 😄

Brian seemed very matter of fact and not displaying any emotions. I suspect he's putting on a brave face, I sense he's very frightened. For both of them to be in the other's shoes must feel very surreal; they know intimately what the other was feeling. With a brand new child, their fear must be palpable. I could see it in Jessica's demeanour and in her voice and facial expressions. They probably have a brand new mortgage too.

I agree, even waiting a whole year between scans would be very hard. Given its stealth behaviour, it doesn't sound like past results are any predictor of future status at all.

I am so glad you are sharing your knowledge with others in some way. I am certain you are helping others navigate this difficult path in their life.
 
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Like Brian, many RCC patients are diagnosed as an incidental finding.

A few years ago the NHS ran a research study. Teaching dogs to sniff out urological cancers in urine samples. Prostate, bladder and kidney cancer!
Recently I was also told a new study is going to see if dogs can detect urological cancers in sweat! A common symptom of RCC is night sweats and complaints from bed partners about a "strange smell" which is described as sweet or fruity but very potent.
 
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Any news?
Someone here noted that they mostly post on Sunday evenings. Brian will know his pathological T Stage by now, I hope the tumor did not spread through the kidney capsule and make its way to the outside of his kidney, it looked like this was a possibility on the CT scan. I wonder if he's had a PET scan (to rule out metastatic disease). And Brian had wanted to plant a vegetable garden at their new house, hopefully he did at least a bit of planting before he got diagnosed or is able to get in the garden now while he's recovering.
 
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Anyone watches this channel? Colorectal cancer.
They seem like good people.


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Someone here noted that they mostly post on Sunday evenings. Brian will know his pathological T Stage by now, I hope the tumor did not spread through the kidney capsule and make its way to the outside of his kidney, it looked like this was a possibility on the CT scan. I wonder if he's had a PET scan (to rule out metastatic disease). And Brian had wanted to plant a vegetable garden at their new house, hopefully he did at least a bit of planting before he got diagnosed or is able to get in the garden now while he's recovering.
I just went back to their last video and checked the comments to see if there was something new.

Brian graciously responded to some queries in the comments some time ago but no word from him for a while now.
 
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Great news that his hospital are on the ball. They have basically done equivalent to what UK oncology clinics do with younger RCC patients. Genetic studies.
A FiSH study ( fluorescent in situ hybridization). Brian was negative which means he doesn't have any of the rarer forms of RCC often found in RCC patients.
Still a massive concern for Brian though being grade 4. It's the highest grade possible and it means that although he had a standard RCC, it is acting and growing aggressively.
This actually confirms that Brian doesn't have the typical slow growing RCC. It grows aggressively. It actually makes me wonder if Brian developed RCC through stress of what he went through with Jessica.

Like I said and like Brian has now been told. There is no chemotherapy or radiation therapy available for RCC, because RCC doesn't respond. I believe that's because chemo is designed to kill fast dividing cells, but what makes RCC different to other cancers is that its cells divide very slowly. This makes chemo and radiotherapy useless.
Immunotherapy Keytruda & Yervoy or Opdivo & Yervoy ( UK names pembrolizumab & Ipilimumab) & Nivolumab & Ipilimumab can work on some patients with RCC. I believe Brians made the right decision so far. Not using immunotherapy yet. I had meetings with a Professor of RCC at the Christie - Professor Hawkins (now retired) and he told me to imagine you have one bullet. You have cancer (enemy) and one single bullet. When to use that bullet? When there is nothing there (microscopic) or when it's aggressive and spreading?
Grade 4 as a tendency to spread down the line. I would wait until something appears (if) and maybe down the line there will be more treatments (and better tolerated).
If Brian uses immunotherapy now, his disease will mutate and become resistant to immunotherapy down the line. Save it until its absolutely def needed.
I feel sorry for both Brian and Jessica. I hope Brian does make massive lifestyle changes and he is one of the lucky ones that doesn't have a recurrence. I truly do. I lost my husband to this beast. He had a trial of immunotherapy which worked wonders for him (got him to NED) but microscopic disease was still lurking and his cancer was then resistant to immunotherapy. We had nothing left to use.
 
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@Saydee you are so brave and selfless to use you and your husband's experience to educate us.

It helps us to understand what Brian is facing.

Thank you. ❤
 
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I noticed that Jessica is back to being grossly overweight too. Some scenes of her, from behind, pushing the baby stroller. I just don't understand these two. Both with cancer yet Jessica seems heavier now than before her diagnosis. Brian still quite heavy too. I hope he sticks to his weight loss promise. But if Jessica is overeating, that will be hard for him too.
 
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@suzeq
@Saydee you are so brave and selfless to use you and your husband's experience to educate us.

It helps us to understand what Brian is facing.

Thank you. ❤
I must be getting soft because I actually filled up seeing Brian after surgery, and Jessica and Elsie waiting for him :( Isn't it a cruel horrid disease!

I can't even imagine how difficult it must be for Brian. He was Jessicas carer/advocate for so long, and now he is the patient himself. Both on active surveillance and living in hope that scans will be clear for both of them.

Brian if you read, please join https://www.smartpatients.com/communities/kidney-disease
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I noticed that Jessica is back to being grossly overweight too. Some scenes of her, from behind, pushing the baby stroller. I just don't understand these two. Both with cancer yet Jessica seems heavier now than before her diagnosis. Brian still quite heavy too. I hope he sticks to his weight loss promise. But if Jessica is overeating, that will be hard for him too.
I did wonder the same ladyt but I wonder if now having Elsie makes it easier for them to slack off healthy food options.
I hope Elsie and both cancers spur them both on to make changes and get themselves in the best shape possible.
I hate to say this but being overweight is a known cause of RCC. In a recent annual global RCC survey the results spoke volumes. Patients are asked about their age, stages, grades, treatments to date, if they had partial kidney removal or full nephrectomy. It then looks at symptoms they experienced before their diagnosis and looks at lifestyle. Smoking? Have they ever smoked? Diet, Weight, Blood pressure etc. A whooping 87% of RCC patients stated they were overweight at diagnosis. It speaks volumes to me because its such a high number of patients.

Brian losing weight and keeping weight off will certainly be beneficial for him.
 
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