Feeling a little overwhelmed
The story so far.
I visited turkey 8 weeks ago along with my wife for gastric sleeve surgery, the hospital screening process found a 6.5x5.5 tumour on my left kidney and a 3x2.5 tumor on my right kidney - I had no symptoms for these tumors and its all a bit overwhelming.
The hospital decided not to go ahead with the operation, however my wife had her sleeve completed.
Back home in England I have been seen to quickly by the NHS and 2 days ago I was finally sat down with the surgeon who is doing the operation.
He suspects both tumors to be malignant and the plan of attack is to remove the left kidney within 2 weeks, 3 months post surgery the team of specialists are going to decide what to do with the right kidney tumour.
I'm going to try and include a screenshot of the CT scan, removing personal details if possible.
There is some positive news...
My wife has lost 2.5stone in 2 months, I have tagged along with her healthy eating and reduced portion sizes and managed to lose 2 stone in the same period.
To be honest we are not overly obese I am 6'2" and was 20stone 8 and now 18stone 8 with a target of 16 stone.
I suppose I'm here for support and the finer detail, it's been a shock, it's been a rollercoaster of emotions and as the title I'm feeling a little overwhelmed.
Comments
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Welcome, pumpy. I'm sorry you had to join us like this, but it's a great group here - we've been through it and know what you're going through, so we know you're going to do great.
With these types of things, it's always better to find them sooner, so thank goodness you went to Turkey and got that discovered when you did. The shock and overwhelming feeling is normal. All of us were there where you are now. It's a lot to take in, but you'll soon be an expert in this stuff.
Your doctor's plan sounds right. With that left tumor over 4cm, that's the more urgent one to get out.
And congrats on the weight loss! That's awesome. Keep that going!
You're going to do great. We're with you!
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Welcome to the board you will do great and great job with the weight loss like eug91 said doctors are on the right path get the larger one out first I know your head and feeling are going crazy right now try to relax you going to get Thur this trust me stay off the internet most of it is old news good luck keep us informed of your progress your in my prayers
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Thankyou for the support
After initially getting worried that it may have spread to lymph nodes and other areas such as lungs, I now feel some comfort that there is no evidence of spread anywhere according to MRI and CT scans - well only maybe the other kidney but this is not a given as the surgeon in turkey suggested that the big one on the left began as an oncocytoma and has perhaps turned malignant, the smaller one on the right the same surgeon suggested that this was a bosniak type 4 cyst.
I suppose I'm trying to decide what stage cancer I have - I know that I will probably find out soon enough it's the not knowing that has been the worrying aspect.
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Above you can clearly see the larger tumor on the left kidney, the right kidney you can make it out in the middle on the outer edge.
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Hi pumpypants (thanks for making me giggle with your name😊) welcome to this place. I think that staging isn't done until after surgery at least that's how it was for me. Congratulations on your weight loss for you and your wife. That will help immensely. Please keep us updated and we will share info and encourage any way we can!
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It's been a difficult first week, I thought in my mind after the first day that I had this mentally but its proving difficult.
Its the not knowing that's difficult, I am being supported immensely by my wonderful wife.
I look at the image above once a day and imagine the left kidney gone and this helps and I'm very much looking forward to the nephrectomy, but it's the not knowing all of the other finer detail, some days feel like weeks and I have concerns about the other kidney now.
I suppose it's natural and expected to feel overwhelmed, some days are good most are negative but then I thank my lucky stars it's been found.
I have been reading conflicting information about the growth rate is this something I would find out post surgery when the mass has been examined ?
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Post surgery they should be able to tell you tumor grade which could give you some of idea of how fast or slow the tumor has been growing. They way I understood grade was how aggressive. I would ask your doc though, I am sure he/she will be able to give you a better idea than I can.
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After your nephrectomy, they'll do a biopsy on the tumor. You should get the report from your doctor, which will have information such as the exact type of RCC, the stage (the size and spread), and the Fuhrman grade (how aggressive the tumor cells are).
Keep your positive attitude up - you're going to do great!
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After surgery, it's pathology. A biopsy is done on just a small tissue sample, usually to determine if surgery is necessary or at least urgent. Stage is based on size and if it's invasive into the kidney tissue. Grade is based on subtype of RCC, how fast the cells were growing, and some other factors that only count if certain things are present.
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I had a chat with my GP today and he has prescribed me with 5mg diazepam (valium) as a short term fix.
I have to say this has helped a lot, it's taken the edge off the whole thing, I feel my sadness and anxiety has drifted away - still focused, still up for the fight but it has helped with the sadness of the situation and I also don't feel that worst case scenario panic.
Thanks to everybody for posting, all the advice I have taken on and digested.
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update
I have had my left nephrectomy completed and I defenitley wasn't prepared for the operation in terms of pain and recovery time.
Surgeon said my kidneys were slightly too big for me - in that there had been extra growth over the years - keyhole surgery was a struggle apparently and a bit awkward, surgeon was 30 seconds away from an open surgery decision during operation but persevered.
Was in hospital 4 days and then sent home, next 7 days couldn't keep anything down , readmitted to hospital for further CT examination and to get some food into me with help of anti sickness.
That day is today, due to be re-released today.
Other tumor they are going to look at in 3 months after examining this tumor on CT they were not overly concerned about it and are going to take biopsy first as they don't really want to disturb it. If it's not malignant they are not going to cut it out but treat with other means.
It's been a rough ride so far but I'm up for the fight.
Weight monitoring
Was 20st 8lbs now 16st 10lbs
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Tumor results today are written below from the nurse, it was all a bit of a rush but I'm seen as intermediate risk.
T2a with nuclear grade of 3 and mayo score of 5 these were not particularly explained in depth.
But no spread is noted throughout my organs which can be seen by CT scan.
I think the nuclear grade of 3 is bothering me a bit and I'm not too sure about mayo scores either.
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