Kidney cancer

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

Recurrence after three months post nephrectomy?

pugs2411
Posted by


Hi all,

 my hubby was diagnosed with a 9.5cm tumour on his left kidney in July this year and had a radical nephrectomy in August during which they ruptured the tumour - we were told it was dealt with and cleaned.

His pathology showed it as T3a N0 M0 predominately grade 2 cells, focal grade 3 (can anyone please explain what the focal bit means?).

He suffered a wound infection about three weeks after the op which was treated with antibiotics.

In the last two weeks he has become really bloated with gas and you can see his tummy is bloated. He was admitted to A&E this Tuesday and given a CT scan. 

He has been told there is a small mass where the kidney was removed which could be a recurrence or something to do with the op - would a recurrence show so soon?

Also where his laproscopic wound is they said there is some internal blood an necrosis.  He now has to wait in hospital until Monday (it's now thusday) for their MDT meeting to discuss and he hasn't been given any further info such as what would be the options if it was recurrence etc.

Back to being so worried and waiting :(

Thanks for taking the time to read

Jo300
Posted by

Hi pugs2411

From everything I've ever been told I'd honestly be surprised if there was a recurrence so soon - particularly one causing that degree of reaction. 

IF which the more I think about it the more I think unlikely - it is - then there are a lot of options for treatment going forwards. I'm not surprised at all that they haven't been discussed, it could literally be a none conversation. However IF it is, then please take as much comfort as you can from the fact that there are many of us here who are stage 4 and being treated and living pretty much perfectly normal lives with every intention of living them for an awful lot longer yet xx

Focal grade is the highest grade of cell in a tumour. Basically, most of the cells in the tumour were grade 2, which is great - but a few were grade 3. Hopefully this is surgery / wound related and things will start to improve again very soon.

Jo
x
pugs2411
Posted by

Thank you for taking the time to reply. He is getting a visit from the oncologist tomorrow so hopefully they may be able to shed some light on what is going on.

I really appreciate your kind words. Thank you 

pugs2411
Posted by

The doctor has been round this morning and ordered a full ct scan as he said there are some ‘worrying indicators’. The oncology team are visiting at some point today.  I am so scared and worried.

his full ct scan four months ago showed N0 M0, how could it go wrong so soon :( 

Jo300
Posted by

Will keep everything crossed that it’s not a recurrence and you get some answers very quickly. Let us know how you get on xx

Jo
x
pugs2411
Posted by

Thanks Jo, i’m just clinging to the fact there was no metastasis four months ago so anything they find will have been caught early.

pugs2411
Posted by

cancer has completely come back and aggressive, they are starting immunotherapy next week but said it only works for 50%, devastated. scared.

dont know how to tell our boys, 10 and 14

Jo300
Posted by

Oh my goodness. I am so so sorry

The only thing I can say from experience is take your time telling your boys. They don’t need to know today. Give yourself a bit of headspace first. I made this mistake with my son who was 14 second time round. I told him it had come back the day I found out and I didn’t make a particularly good job of it. I got too upset to be able to reassure him well. I was cross with myself that I had told him so quickly after finding out myself. The result was he went to google and spent the next three months thinking I would die imminently. I’ve only just found that out three years later and I feel awful about it.

immunology has the potential to be great. Someone has to be in the 50% that works. Your husband is young and strong and hopefully that will stand him in good stead.

I know we will all be keeping you in our thoughts for the very best outcome.  

Jo
x
pugs2411
Posted by

may I ask what treatment you had? 

Jo300
Posted by

You can ask anything at all. 

I'm on Pazopanib which I take daily. 

I think has experience of nivolumab if you’re being offered immunology. I do remember when I was diagnosed second time my oncologist being very optimistic by the work being done in this area.  At the time immunology was my third line option, but I know things have changed since then.

Is also starting on a mab around about now I think? Maybe he can shed some light on the immunology side too .

Jo
x
buttercup01
Posted by

Hi

Really sorry you've had a recurrence so soon. Do keep us posted x

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
pugs2411
Posted by

i just don’t know how to be reassuring to our boys, I know they are going to ask if their Dad is going to die and I don’t have the answer. My youngest is a big worrier x

pugs2411
Posted by

i just don’t know how to be reassuring to our boys, I know they are going to ask if their Dad is going to die and I don’t have the answer. My youngest is a big worrier x

Gragon
Posted by

Hello ,

I'm sorry to hear your news and can appreciate that there will be all sorts of things going through your mind at the moment.  It is a difficult time as everything that you thought you were going to do with your life is thrown into question and you are left with lots of uncertainty and confusion.  Do you know what type of Kidney cancer your husband has been diagnosed with as this can make a significant difference to the treatments available?  I have renal clear cell (RCC) which is the most common and which has more treatments available.  RCC is usually slow growing but I am no expert in this, just a fellow patient.

When I was first advised my cancer had recurred I was erroneously told by my Urologist that I had terminal cancer.  My Oncologist later corrected this to advise me that until I had exhausted all the treatment options I was incurable rather than terminal.  However, this did mean that initially I felt I had to get everything in place for my death, including telling my then 9 year old son.

At my hospital there is a Macmillan nurse specialist attached to the Urology unit and my wife and I approached her to discuss what and how to inform him.  We had a chat with her and she also provided a booklet about how to talk to children about cancer. (click here)  We decided to be fully open with him but to phrase things in a way he could understand and we needed to be aware of how much he wanted to hear.  By this time I had started treatment and as we explained to him what the situation was he quite openly stated that "I don't want to know if you are going to die".  I am now nearly five years on and only recently told him that I had initially been told that I was terminal.  There is also a specialist website for teenagers who have a parent with cancer called "Riprap", I have put a link here (click here) but have no direct experience of the site myself.  I know it is on Macmillan's list of approved websites.  It may be that your children have questions that they want to ask that they do not feel able to ask you for fear of upsetting you.

We contacted the pastoral team at my son's school and explained the situation and they were marvellous.  They talked to him on a regular basis and when he moved to his senior school they liaised with them as well to ensure a smooth hand over.  He now has a "get out of class card" which if a subject comes up that he finds upsetting he can simply show to the teacher to enable him to leave the class immediately without having to explain in front of all the class and he can then either take five minutes or go to the pastoral care room to chat to the staff there.  If a parent is terminally ill then an allowance can be made with regards to their exam results for their GCE's and A levels to take account of the additional stress and worry.

He has also been referred to the "Young Carers" as although I physically look after myself I know that he avoids certain subject with me in case he upsets me, sometimes talking to my wife instead, and he also sometimes does not argue back as he might as he thinks I am probably stressed about my illness.  This is not anything that I have asked for but something that he and other young people often take upon themselves and as such they qualify as Young Carers.

If there is not a nurse specialist at the hospital you can apply for a Macmillan nurse.  I have included a link here to advise how you could do this. ( click here).  I am not sure how long this process might take but you might also consider ringing the Macmillan helpline.  They are very good at offering emotional support but can also help answer those practical questions which run through your head in the background about finances, work, transport.  They helped me look at my life insurance, employment right, pension and took a lot of the practical concerns so that I was able to focus on the health matters.  You can call them on 0808 808 00 00 everyday between 8am and 8pm.

I found that once I had addressed each question I was able to relax just a little bit more as I began to feel back in control again.  The emotional roller coaster will continue as the treatments continue and you have to wait for scans to find out what has happened so get what support you need in place for you and your children and it can make things easier to manage.  If people ask you "is there anything I can do" then if you do need something you can say that "actually that would be really helpful if you could …." 

I hope that you find some of these suggestions useful and I wish you and your family all the best.

love and hugs,

Gragon x

pugs2411
Posted by

Thank you so much for your detailed reply it really is appreciated. I want to talk to someone first before telling the boys but the eldest is already picking up something is wrong. My partner has RCC but it’s quite aggressive. he has a radical nephrectomy in august and it’s already come back and at several sites in the abdomen. do you mind me asking what treatment you had, glad to hear you are still going strong five years on. We are trying to stay positive but it’s like everything has been pulled from under us. We both absolutely love christmas but at the moment can’t muster anything, but I know we must for the boys.

a good idea talking to the school, once we’ve told the boys I will get onto both schools. 

thank you again for replying it’s so good to be able to chat to people in the same situation.

x