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kidney tumors

batley
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hi all has anyone in england had key hole op to take a kidney tumor out , or anyone any where really , my brother has a 3,9cm tumor on kidney and was told possible key hole but i cant see it myself , as well as all this he has a brain tumor covered by a cist with fuild which has to come out has anyone suffered with this , it made him very poorly a few weeks ago , trouble is its which op comes first , we find out tommrrow about kidney very trying time , brother already has no adrenal glands , any advice please

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Cancer Pain

5 replies

batley

hi thanku for the replys i do have to say that anythink i ask in here is bein asked for me to do , from my brother and his wife i do not in any take over or get in way , i also talk with them about the questions they want to ask when in the doctors , i was asked by my family to go with them as i know when you get in there yr mind goes blank which has happened to me many a time so i was just there to make sure nothink was missed out , and also i know what my brother and his wife is goin threw i try and be there strenth as well , we lost to many in our family not to know the pain of vhl , anyway the 3.9 is hard but there are sayin not cancer , the 1,8 is also hard but is cancer , but in all thats said the brain must be dealt with first , and scans for kidneys again in 3 months time , i am sorry for yr loss mary , its all so hard to lose the people you love , best wishes to everyone will keep this updated on how its going

MARYWEETMAN

Dear Lesley,

I agree with the comments Joyce has made, and it is always good to list what you need to know in a consultation, so that all is covered when you see the doctor.
Also it is important to remember Lesley that it is your brother and his wife who need to decide what they wish to know. People often ask questions in such a way that they gain the knowledge they need at that time, and some do not want to look too far into the future.We are all different in this respect, and need to respect the wishes of others.
I have spent a good part of the summer helping to care for my brother, who died a few weeks ago. I did take him and his wife to the hospital for various appointments, and they asked me to be with them. However it became apparent that they were dealing with the situation in a way that I would not have done. I need to know all details etc. but Jim and Mary
needed information a little and often. I had to accept the way they dealt with this sad situation and just support them through it, as to have intervened with my questions would not have been right. To be a sister is difficult in this situation, and sometimes painful, as we are not 'next of kin'.
I do hope all goes well for your brother Lesley, and I am so sorry that you have this worry added to all the other anxieties that you have.

Ring me at any time it a chat would help.

Mary.

joyceg98

Leslie, this is not the place to discuss the details of such a case. We are not doctors. You need to have this discussion with the doctors.

I know that news like this is shocking, and that you sometimes have to get a grip on your emotions before you can ask the good questions. Perhaps your brother or his wife need to ask the doctor to phone back and help them understand. From your description I do not have sufficient information to comment on this.

Let's put together a list of questions. I will propose a few, but I might not be on the right course myself because I do not have enough details here to understand it. But I think I would start with:

1. Is this a CYST or a hard tumor? If it's a cyst, then size is less of a concern. I am assuming that it must be a cyst, because I do not believe they would propose to observe a 3,9 (3.9) cm tumor for another four months. However I do not want to second-guess your doctor -- instead, please ask this question and get more information.

2. Why are you proposing to observe this tumor for another four months? Isn't 3,9 a pretty big and threatening size for a VHL kidney tumor? (If it's a hard tumor, then it's cancer. If it's a cyst, it is not.)

3. I'm unclear about your comment "where has it gone?" I did not see anything in the numbers you put forth that anything had gotten smaller. But if it has, then that is the kind of behavior we might see in a cyst. Which would be very good news. And you need to get clearer information so that you understand.

Your doctor is probably thinking that he was very clear in his explanation. And quite possibly he WAS quite clear, it's just that you were so stunned that you didn't hear everything he said. So ask politely for the doctor to go over it again, please, and explain to you what's a cyst and what's a tumor.

If they are unsure what's a cyst and what's a hard tumor, then ask them how we can find out. They sometimes do an ultrasound in addition to a CT or MRI. The different kinds of pictures give them additional information about the nature of the tumor, its density, etc.

Best wishes,
Joyce

batley

hi just got back from hosiptal , and my oh my im shocked , he has tumor size 3,9cm on right with lots of cyics, at a size of 6,8, and many others on both kidneys , on other kidney size of 1,8 tumor , i nearly droped threw the floor when he said he didnt know if they were cancer or not so they r leaving it for 4 months , oh my god i am gob smacked , and how does a 6.8 cycist srink , he couldnt even tell me where the hell has it gone , ive never heard of that happening , please joyce if you read this please answer it my family and his wife is very confused , or anyone answer thankyou

live

Hi batley,

It's very possible that it can be done with laprocopy (key-hole). It's pretty much widely practiced these days. However, it all depends how the tumour is located not only the size. Anything over 3 cm should be attended to ASAP. You can ask if they can do a RFA (Radio Frequency Abalation) on it as well, although this is normally done on tumours less than 3cm in size. I had a back to back brain and kidney in a span of one month. It was rough. Sequence depends on how the doctor's recommend it. I wish your brother strength. I am surprised the doctor made him wait till the tumour got to 3.9 cm. Did'nt the doctor know he had VHL? Our chances are better by constant monitoring. VHL in the kidney normally don't grow very rapidly and can be spotted when very small. It should have been attended to when it got to around 3cm.

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