Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

complex cyst

dom1969
Posted by

Hi every body

Ive just popped over from the bowel cancer forum having had this 2 years ago.

Any way on a ultra sound for a hernia yesterday they said I have a slightly complex cyst on my right kidney, cause for concern or not please?

thanks in advance

dom

buttercup01
Posted by

Reckon u need more info re cyst, " slightly complex" not helpful. Can u ask your cancer support nurse about it or email the consultant's secretary to ask him/ her?

We and the nurses at the helpline 0808 808 0000 can guess at what it might be but could b completely wrong. After all, u don't want to waste a good worry, do u? 

Btw, it seems I've got a cyst on my liver, (seen on past monitoring CT scans post nephrectomy ). The medics know it's there but aren't bothered about it, so neither am I.

Hope that helps!

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
dom1969
Posted by

Thank you,

She said she would write to my GP within two weeks, from what else she said I've made an educated guess at a Bosniak 2 or 2f, why they cant give this information is beyond ne to be honest

buttercup01
Posted by

Is "she" the sonographer?

Yeah, why give you half a tale, enough to bother u, but not enough to inform u !!

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
dom1969
Posted by

Yes, SHE is the sonographer to be fair I did ask if there was anything to be concerned about and she said no quite emphatically....didn't have the best bowel cancer journey and a lot of trust in the NHS went out of the window...but exactly, 1/2 a tale!!!

I asked what " slightly complex " meant and she said there was a line through it., why not just say its a septated cyst for god sake i detest it when they assume your an absolute medical bloody moron, 

buttercup01
Posted by

Yeah, I totally agree  with ppl assuming we know nothing re medical terms etc

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
sueCC
Posted by

Hi Dom1969, my husband had 2 bosniak cysts, his were apparently 3 and 4 but as no one has mentioned cysts since his operation we’re still a bit in the dark over that. They were big at 30cm together, from what I read on google ( I know we shouldn’t) anything over 4 is mostly cancerous. He has Papillary type 1, grade 2 and stage pt2b, Papillary type 1 has a better outcome so I’m lead to believe. He had his kidney out last Oct by open surgery and never looked back, first CT showed a small nodule second one we got results back last week and all clear, back for for another CT in a year. Of course yours may just be cysts as a lot of people have them. Keep in touch and good luck x

Sue Xx
dom1969
Posted by

Hi all

So finally got to see the consultant today, some 18 weeks after the GP referall, they are sending me for another CTm my CT in october 2019 showed the cyst as a Bosniak 2 but he wants to doubcheck, has anybody any experiace of a Bosniak 2 turning into something more sinister please?

dom1969
Posted by

ps forgot to mention the cyst was reported on on my 1 year check up after bowel cancer

sueCC
Posted by

Hi again Dom, I said above about my husbands bosniak cysts and I obviously googled at the start of his journey, I read as I’m sure you will have done that 1 and 2 are generally not cancerous. My husbands is Papillary type 1 RCC and doing well. I hope yours turns out to also be good. Please let us know how you get on. x

Sue Xx
dom1969
Posted by

Hi sue

 I hope you dont mind me asking, are you from louth by any chance ?

best regards

dom

sueCC
Posted by

OMG Dom, yes we are x

Sue Xx
dom1969
Posted by

ha ha small world, I am in Skegness!

Im not stalker I promise ! I saw your post on the kidney facebook site and thought it was you, I hope you dont mind me asking you a few questions please?

Most importantly how is your husband getting on now? Did see your consultant at Louth, I saw somebody called Twocross last week at Louth, and where did your partner have surgery please.

How long was it before you heard back from urology please after the CT scan, I ve looked and IF mine requires surgery its extremley rare for it to spread, but they dont seem to be going very quick, I waited since august for my appointment and my CT isnt until the 15th of Jan

I know its daft but my biggest worry at the minute is that it wont all be sorted before the end of March, we have a family holiday booked for then, the first one since I had the all clear from bowel cancer 

I get the feeling at the minute that they are just been very thorough as I had lots of CT scans for the bowel cancer, well I hope so any way!

Hope you dont mind the questions

Very best wishes 

dom

sueCC
Posted by

Yes a small world, (I did try and stalk you but came up with nothing lol) No I don’t mind you asking me questions at all. My husband is absolutely fine you wouldn’t even know he’s had his kidney out, he was ok before he had it out, never a problem and he’s been fine ever since he got out of hospital, I did wonder why after reading a lot of posts saying they had problems, but just happy he didn’t. He had his operation at Lincoln and that’s where we go for his CT scans, he had his first two appointments at Lincoln also to see consult before his op, only been to Louth once to be told he had a small nodule after his first CT, but that was ok on his second CT.  

Ive never heard of Twocross at Louth but a Mr chocoff (ovs not spelt right) did my flexi scope at Louth so could it be him? What did you have done at Louth? My husband first saw a Mr Daruwala and then Mr Varadaraj who told him what he thought it was after CT, Mr Varadaraj  did his operation it took 5 hours, he’s his urologist also mine. All appointments have been at Lincoln apart from 1, now it’s just letters if everything’s ok.

They have MDT meetings on a Thursday at Lincoln so I waited 2 weeks after that and phoned CNS up for results which was given to me then they send a letter but that takes ages. With you having bowel cancer I’m sure you know all this anyhow.

Cant really advise about the holiday as there seems to be lots of options open and you don’t really know which way they will go, we waited 5 months before we went on holiday after operation.

My husband first noticed the side of his stomach was a bit bigger than the other side while we were on holiday July 2018, went to doctor when we got home, he had his operation 30 Oct after two cancellations.

Hope this helps and please ask if you want to know more but do let me know how you get on. 

Sue Xx
dom1969
Posted by

Hi Sue

Thanks very very much for the reply, yes I think it was Chocov, tall thin man . very pleasant, I am by the way as deaf as a post! I just saw him as a routine appt from the GP and he has sent me for the CT to double check as it were, was your husbands op an open or laprascopic please and how long was he in hospital for.

Mr Chocov said at my appointment if its re classified as a three he would do a radical nephrectomy as a matter of course

I m on Facebook as Dom with a picture of a little imp in my work boots should you wish to stalk lol, nothing very interesting though !!

Have a lovely Christmas!!

dom