Suspected Kidney Cancer

Hiya. Sorry to hear ur son and family are on this journey.i am not a medical person so I can only go off my own experiences. I know how shocked and anxious (my son lost most of his eyesight,) so I understand ur pain. I have kidney cancer and had a full nephrectomy. U can read my profile for more. You are doing the right thing in ringing ur team. Did they allocate a nurse u can ring.. if so she may be able to reassure you about how things are going. Use this time to do your research (English sites only from a good source, do not Google. A lot of unsourced info is either out of date or wrong for this country. 

The waiting is horrendous mentally. All of us on this site find it the worst. If it is any comfort kidney cancer, I was told by my consultant, are slow growing.

For myself, I had the op and then offered immunotherapy or/and target therapy...u can look these up on macmillan and cancer uk sites. These may be offered to your son, so research them.

I hope that some of this has helped...

I know you are frightened but maybe another way is to remove the (cancer) word. I named my lesions Rufus for the kidney and Lydia for the one in my lymph.  I know it sounds daft but I said good morning to them every day, because they were part of me. I didn't want to think of them as some alien. Keeping it light and fun really helped me...I even got friends and family on board.

You aren't alone. This forum is a safe place with friendly people. You can ring macmillan nurses. I did when I wanted to cry, just talk..they are wonderful

Hugs and all the very best for you son......

Thanks for your reply.  It means a lot to hear your kind comments, to hear your journey and to research the valuable information you have provided.  Thanks.

Yes, We have been allocated a specialist nurse.  Tomorrow will be 1wk since our consultation, so the next round of persistent, yet polite phone calls will begin again. At the minute, I read everything, but filter the Google and other such rubbish. 

kinda like that you named your lesions, I guess to provide some humour, despite such a sobering subject is a great way to provide some light. At the minute, it’s all very raw for me, the most fun name I can give my Son’s tumour is… wan&&r!! …at the minute. 

I spent a few hrs reading and researching into the early hrs last night.  You’re right, this does feel a friendly place.  I’ve spoken to a couple of MacMillan nurses.  All helpful.. 

Wishing you well.  

It is still early days, but trust me things in your mind will settle. It is all a huge shock and a lot to take in. 

I understand your pain and anger, however. Try and make each day a good day because when the op and treatment starts your son may be more tired while he recovers.

Just one step at a time, one day at a time. 

Always here...just reach out hugest hugs to you all..

Hi

Sorry to hear about you Sons suspected diagnosis, iam afraid I can't give much advice or suggestions but sounds like my husband is on a very similar journey. 

By chance a tumor was found on his kidney and since has had CT scans and an MRI scan on his spine which was wasn't told why. We are now awaiting to hear results from both scans and although trying to remain positive are pretty terrified. 

If they have told him he needs surgery and hasn't spread then as awful as it is that sounds reassuring.  The whole waiting game is an emotional rollercoaster and we haven't been told anything in over 8 weeks! 

I rang up lots and got scans brought forward but haven't had any luck bringing consultation forward.  We to was looking at going private,  but think that can take time to. I hope your son gets a date for surgery soon, there is no harm in ringing to seen if there are any calculations or any information. 

My husband is only 42 and we thought relatively fit and healthy so yes news has felt abit like a train crash to us to.

I know how these things can effect the whole family but iam sure having your support is a massive comfort for your son, wishing him all the best on his journey. 

Hello.  Thanks for your reply.  I am sorry to hear about your Husbands diagnosis, and the uncertainty and fear this brings. Our world has just been turned upside down, completely upside down, so much anxiety and worry. My Son’s mental state is shot to pieces, becoming more withdrawn every day.  I’m speaking with various support networks, this helps me, but my Son isn’t ready for this yet.  

We were told it was a 7wk wait to see a consultant surgeon. I refused to accept this and managed to get to speak to his NHS secretary, by obtaining this number from the urology team. The consultation was brought forward to within a week, so be persistent. A cancellation. Apparently. 

• At the meeting, we were led to believe my Sons case was urgent and a radical Nephrectomy would be possible within a few weeks, told his case would be marked as priority due to his young age. I was told we would receive a letter within a week or two  I chased this up with polite persistence   Yesterday, I was told there would be no letter first, but a phone call, at any time that might give an Op date. I was told my Son is on a waiting list of over 60 people in my region. I was also told the surgeon only performs two operations per wk, and is the only surgeon that performs this operation in our county. It was explained that we have only been waiting a couple of weeks since the consultation, people have been waiting up to 6 months on the ‘list’ so we shouldn’t expect anything soon! I was so horrified to hear this I asked what a typical , average wait time is currently. 4 to 6 months apparently. I find this unacceptable for my Son, I find this unacceptable for any person. So much so, I returned home to research public statistics average wait times for cancer sufferers in the UK, by region. I’m using this to write to the key people in my Sons urology team.  It won’t change things, but selfishly, I’m doing what ever I can to leverage a clear response. Communication in this troubled time for my family is the minimum I expect.  All I would like is truth, the facts so my wife and I have all the options to make informed decision. 
  
  

i was upset, frustrated and angry yesterday.  Of course, i was polite snd respectful on the call but  reading so many forum, blogs etc it appears waiting, more waiting is the norm.   I wish you well on your journey. Sorry for my rant, may be it will help. 

it would be interesting to hear more from this group, regarding wait times from initial, suggested diagnosis > Consultation > Notice of treatment > Operation  

Hi, my hubby was diagnosed at 45 (he's now 50) so considered young for this diagnosis. At that time his tumour was 13 cm (5.5"ish I think). I remember the fear and need for information. Your son will have a Macmillan nurse who will also support you if you are Next of Kin. 

Like others have said, use the time for research from reputable sources but try not to focus on the stats as they're always based on older data and treatment is progressing rapidly in this area. 

I wish you and your family all the best. x 

Hi

Sorry for delay in response , I think sometimes having a good rant really helps. 

I know how frustrated you must be feeling all I can say if keep ringing for cancellations or to chase things up which is what I have been doing since the beginning of this journey.  Sometimes you feel you aren't getting anywhere but doing something sometimes feels better and you never know you might get things moving. I hope your son doesn't have to wait to long for his operation. 

My husband has now been told he will now have an operation to determine whether his tumor is cancer which we are pretty sure it is but hopefully operation will be successful as will your sons be.

The waiting and not knowing and trying to be positive but thinking the worse is so difficult,  we are just trying to keep busy.

Wising your son all the best on his journey. 

Hi, apologies for my tardy reply.  I’ve been off radar for several days.  I’ve been constantly calling and emailing the urology team, politely but with persistent determination. 

I wish your husband all the best, it’s all so very difficult and worrying for us all but I find reading other people’s journey in this group helps.  

We were told my Son has a mass on 6th Feb, so I’ve been constantly reading and researching all I can find.  It’s been a roller coaster several weeks. The urology team have been wonderful, patient and professional.  I’ve been pushing for an appointment for his operation, given I’m told it’s urgent. I’m hoping for some positive news soon.  

My advice, given my journey is polite persistence.  

Hi. 

Thanks for your reply and apologies for my late response.  It’s been an awful couple of weeks, kind of given hope, a rough time line for an operation then a few days later reminded they’re others are in a similar position and that there is a waiting list. We were told we could be waiting several months. I’ve politely pushed back on this, I’m told his case is urgent so I push on with determination. 

My son has a similar size tumour. Im horrified, to be told he has a 5” tumour in his 20’s has come as a massive shock to us. 

Staying positive- wish you alL the best. 

Polite persistence is essential indeed. As I well know from experience. However there are meant to be very clear timescales for cancer cases... Number of weeks from suspicion to tests, number of weeks from tests to getting test results, number of weeks to get to see a consultant, and number of weeks from hearing his/her treatment plan to actual treatment. Do check these out. I think the NHS and MacMillan and other websites lay them out. They add a concrete basis to your enquiries. Very best of luck... such a worry for a parent. It is bad enough when it is oneself. I have just had my 3 month scans post kidney removal and all is clear so they won't do any more for a year. Hopefully your son will have a similar result. We have a second kidney which can cope fine... my son's friend in her early 30s has only one since removal and is fit as a fiddle 4 years on. Far better there than in another organ.. to try to "look on the bright side." It helps to normalise it all, talk about it and even find humour. I asked my facebook friends to name my tumour and "Nephrotiti," won the day. We said goodbye to her with no tears. Keep strong. X