Just an update

Hi sueCC,

I'm sorry that you haven't had any replies to date.  I had held off as I'm afraid I have no experience of Bosniak cysts or papillary cancer.

I often don't take things in at the time but when I think afterwards about what was said I realise I have some questions.  I contact one of the research nurses (usually by e mail) involved in my care and ask them.  If they don't know the answer they get back to me later.  Is there anyone in your husbands cancer care team that could explain this to you?

Wishing you both all the best,

Gragon xx

Thanks Gragon, would it not be the same for all of KC or is each type treated differently?  I can see I have a lot to learn. Really hoping next CT scan the thing has gone. Yes he has a CNS in fact she is both of ours, I don’t really like getting in contact with her as I think she has people who are a lot worse off than us to look after  but if I carry on worrying I will have to.

I hope you're doing well Gragon and have you been on another holiday yet? We’re going to Majorca start of June, we have to get them in while we have a clear month. Take care and thanks for the answer.

Hi sueCC,

That was why I held off replying as the treatments can vary.  I am on a biological therapy and I know that these are increasingly being used for other types of kidney cancer but I'm not sure which.  Some types have historically been treated with radio and chemo therapy as they respond better to this than renal clear cell does.  With my cancer if I was told I had a nodule I would presume it was a small tumour but I am not sure if your husbands tumours started off as cysts, whether this might also be a cyst and do not know what they might do about it.

I wouldn't hesitate to contact your CNS.  I'm sure that they would rather you contacted them than continuing to worry.  I'm sure they get contacted all the time by people who have much less on their plate than you do.  I know mine would tell me off and ask why I did not contact them straight away.

We haven't been away on holiday yet as my son is 14 and still in school and my wife works in college so we are pretty much limited to school holidays.  We are planning to go to France for a couple of weeks at the start of the summer holidays.  I had to rethink the trip though as I am insured through Eurotunnel and when I rang to renew I was told that I could only get insurance through them if I had booked a journey with them.  Not a big deal as it is still cheaper for me to book a crossing through the tunnel and get their insurance than it would be to travel by ferry and go elsewhere for my insurance but I have yet to sort our our exact route and dates.

We intend to go to the west of France for a change rather than following the Atlantic coast as we intend to pop into Germany for a couple of days as well to visit some friends.  It is a bit more stressful to organise than booking a package but it is flexible enough that it can be tailored to suit all three of us.  Once it is all booked I really enjoy this sort of holiday as we get to see much more of the country than simply going to one place.

I suspect it will not be long before our son decides that he would rather not go away with us.  We are hopeful that next year we can book a package with my niece and her family.  Her son is six months younger than ours and they get on well together so we are hopeful that they will spend time with each other and get out and about a bit.  Last year in Croatia our son spend most of the time at the hotel playing games on his phone over the internet with his friends in the UK.

I hope that you have a good time in Majorca.  My treatment makes me sensitive to the sun and as I was putting my sun screen on the other day the scent reminded me of putting it on in our room in Santa Ponca before we went out.  It took me straight back there and was a lovely reminder.

All the best,

Gragon x

Hi sueCC, 

I’m sorry I’m not knowledgeable enough about the different types of kidney cancer to be able to give you any clear insight. Mine’s clear cell RCC and so my experience may not be of relevance to your husband’s situation. I just don’t know. But I did have a nodule appear where the kidney used to be. 

It’s now a year since my open surgery, and at about the 6 month mark, the CT scan showed a little something growing where the right kidney had been. It was mentioned at the follow-up appointment but the focus at that time was on the metastases in my lung. 

At the next CT scan, 3 months later, the lung mets were found to have been stable, even a little smaller, but the new thing had whipped up some enthusiasm and doubled in size, and so the attention turned to him. “Where the kidney was”, “on the kidney bed”, and “close to a retroperitoneal lymph node” were phrases used, but I haven’t any more technical info than that. Though small, about 20mm I think, because of its position near a lymph node it had to be got rid of and I was lined up for Radio Frequency Ablation at the end of March. My most recent CT scan has confirmed that it was well and truly zapped. It was also biopsied prior to the zapping and proven to be metastatic RCC. 

So. None of this is much help to you and your husband, I know. Just that I’ve learned in the last year that this sort of thing can happen. A new thing can crop up, be watched for a while to see how it behaves, and then, hopefully, in most cases, be dealt with. Active surveillance can be a worthwhile tactic, especially while your husband’s body is still recovering from major surgery, and July’s not too far off now. 

All the best to you both, 

Mark 

Thank you both for the reply, I now understand that KC treatment can be different for everyone. Forgottonworks that’s very encouraging and thanks for posting, I think I understand better. 

Gragon again thanks for replying, I really hope you have a lovely holiday when you get the insurance sorted out. We went with Boots in the end and thought it wasn’t too bad for a year. 

Good luck to you both xxx