JUST DIAGNOSED! SCARED

Hi Hughug3,

I have just joined too,  and i feel for you.  I'm in the middle of my own terror right now as a tumour that is not looking benign has just been found in my otherwise healthy liver.

Did you mean 11mm?   Mine is 11mm.  I was thinking 11cm is bigger than a kidney right?

Anyway,  so sorry to hear about your diagnosis.  Now,  i'm no expert and i don't want to offer any false hope,  only a possible point of interest for you (and me).  I have this week discovered DCT (Dendritic cell therapy).  I enquired to a company called Immucura. Google them and read everything on their site.  They are based in Spain.  It's a therapy where they take 200ml of blood,  and manufacture T cells (killer cells) and put it back in you.   Now,  it certainly looks amazing and on my initial research it appears to be the future of cancer care.  I got a quote from them.  47K euros.  £42K.   The lady who called me said it works with later stage cancers as well not just ones that are caught early.    

Regarding your pain - was the tumour found by accident or did the pain lead them to it?  

I have in the last week had lots of pains and it sets off a chain reaction.  It gets everywhere where you feel the tumour is doesn't it.   Our brains can't help but tune in to it.

xx

Hi Trance, no mistake my tumour is 11cm, it’s a big one! Thanks for your advice x

Hi Hug,

Gosh.   I can understand why they need to remove it,   but consider it positive news that they actually can remove it!  This sounds good.  Removal plus immunotherapy will likely work wonders for you.   My very best wishes x

Hi Hughug3,

The psychological impact of being told you have cancer is enormous and should not be underestimated.  I too was told I had metastatic kidney carcinoma, which was only found because i had a secondary tumour in my brain as a result.  With a large tumour in the kidney such as the one you describe it is normal to remove the whole kidney as was the case with me.  That hopefully removes the source of any further seeding of secondary tumours.  The first thing to note is that you can live a full and happy life with only one kidney, my operation was two years ago.  Next, it sounds like your primary tumour in the kidney has seeded off into the lymph glands so that is what the consultant will address next using a variety of treatments such as those you mention, chemo & immunotherapy.  I have been on immunotherapy for two years now, which has been designed to flag any remaining cancer cells and trigger the body's immune response to target them 

Hi Hughug3,

The psychological impact of being told you have cancer is enormous and should not be underestimated.  I too was told I had metastatic kidney carcinoma, which was only found because i had a secondary tumour in my brain as a result.  With a large tumour in the kidney such as the one you describe it is normal to remove the whole kidney as was the case with me.  That hopefully removes the source of any further seeding of secondary tumours.  The first thing to note is that you can live a full and happy life with only one kidney, my operation was two years ago.  Next, it sounds like your primary tumour in the kidney has seeded off into the lymph glands so that is what the consultant will address next using a variety of treatments such as those you mention, chemo & immunotherapy.  I have been on immunotherapy for two years now, which has been designed to flag any remaining cancer cells and trigger the body's immune response to target them.  So far so good!  Let me return to the psychological impact which I personally have found the hardest part of the journey. In the early days every time I had a headache i told myself the brain tumour had returned, every ache and pain was a new cancer related problem and I was constantly asking Doctor Google about the symptoms - BIg mistake!  I'm not implying that all of your aches and pains are purely psychological and you should always mention any new symptoms to your consultant.  However, the mind can be your worst enemy on this journey so beware of catastophising and self diagnosis.  You've done the right thing in joining this forum, it is a great source of help and comfort for those of us who are living with cancer.

I wish you all the very best, try to stay positive,

Mike

Hi hughug3

My wife Val had her Kidney tumour (RCC) diagnosed as stage 3/4 which had spread to her lung and adrenal gland, in Feb last year. It is a huge shock and of course causes panic at first. It wasn't until August that any type of treatment was offered which caused a lot of anxiety - why not straightaway? Now we understand that it takes a little time to be scheduled in, but once put on a programme, it seems to work very well. Val's tumour was measured at 10cms, but it's not the end of the world. There are seemingly endless options for treating RCC with Immunotherapy, and it will help if you let everyone know which course you are put on. Val took a lot of comfort from reading replies to her various questions from patients who had gone through the experience. 

Val is on a course which started off with with Ipi/Nivo - just type them into google to get some idea of how they work, but you may be offered another combination. She started in August and of course we wanted desperately to hear some positive news, but none came. Mostly because her oncologist didn't expect anything dramatic in the first few months, but then she had a CT scan in November and he phoned just before Christmas to say "Fantastic News! Your tumour has stopped growing" . Naturally, we had really hoped to hear that it had reduced, but it doesn't work like that. Val's next CT scan is on 4th March when, fingers crossed, we hope to hear that her tumour has reduced in size. That said, once it starts working, it works!

So, all is not lost - just be guided by the experts - Best Wishes for a successful outcome, Ron and Val.

Hi Hughug3 and TranceW,

Sorry if I have not yet welcomed you both to our community my head is in a different place at the moment, they are a really great bunch of people and very informative everyone will help you as much as they can, we all know what it is like to be told that you have cancer and most likely know what you are going through, if you have any problems or just want to rant there is someone who will contact you, no question is silly and we will all try to help where ever we can as you know no one wants to be a member but we are all glad of the group being there to help sending hugs and best wishes to you both love Sandy xx

Hi Hughug3

When my cancer was discovered, there was a large tumour in my right kidney, plus many smaller ones just about everywhere else in my body. After 4 sessions of immunotherapy, I was scanned again. This was 3 months after the first scan. My tumour had shrunk by one third! And some of the others had disappeared from the scan ( though they may still be there, although too small to show). All of them are shrinking, so my treatment is continuing. I will have another scan to check progress on 22nd March. It is possible for the immunotherapy to tackle really large tumours. I hope your wife gets good news on the 4th march!

That's really nice thanks Sandra.