Kidney cancer diagnosis

Hello Glambert

I'm sorry to read your post, and that you find yourself here. But welcome to this forum, where you'll find lots of supportive people who will help you and share their experiences with you.

I, too, was immediately diagnosed with stage 4 renal cancer. When mine was found, it had already spread from the kidney to both adrenal glands, the pancreas, both lungs, one breast and many lymph nodes. It seemed totally hopeless, and not worth going ahead with any treatment.

However, like your husband, I was offered immunotherapy. I was really not sure about accepting it. That was over two years ago! My cancer is now stable, all the main tumours have shrunk by more than 50%, and have stayed that way. I do get regular 3 monthly scans to monitor this, and there has been no change for more than a year now.

Yes, I did get some side effects, one of which has been permanent, so the immunotherapy is not without risk. BUT, and it's a big BUT, I am leading a 'normal' life, can do pretty much anything I want to do, and most of the time I feel really well. It has not been an easy 'journey', I have to admit, but it has been worth it. I don't think I'd still be here enjoying my life if I had turned down treatment.

I know it is very early days for you and your husband, and I can remember how scary it was, and how anxious I was. But please have hope! Try not to 'google', as a lot of the info on the internet is inaccurate and out of date. Make use of the support line on this website if you need advice and support...they are excellent!

I'm sure more people will respond to your post soon.

Try to have hope!

Sending a virtual hug

Candysmum

Thankyou so much for replying to my post,I'm just so scared of what's to come,he was supposed to have immune therapy by injection and tablets,but they say he's not strong enough for both so he's on the tablets.  What a journey you've been on,I'm pleased your doing well,thankyou for giving me hope x

Hopefully they will be planning to introduce the immunotherapy infusions once the oral treatment has had some effect, and he is stronger.

xxx Candysmum

Hi Glambert, I’m so sorry you and your husband have had this news. I’m 49 years old and was diagnosed on April 4th this year with incurable stage 4 kidney cancer with lung mets. My cancer is also grade 4 which is very aggressive. The original scans showed a large left sided kidney tumor 10x11x10cm and 25/30 lung metastasis spread between both lungs between 5/10 mm.

This came as a massive shock as apart from some blood in my urine 2 days before diagnosis I had no other symptoms. I have a wife and 2 teenage children, telling them was the worst thing I have ever had to do ( as was on my own when I found out). 

I was transferred to the Christie hospital in Manchester for treatment, the 1st scan I had there showed my kidney cancer had grown to 11.5 x 11.5 x 11.5 in just 3 weeks. I was then started on 40mg of Cabozantinib daily tablet and Nivolumab which I take via IV every 4 weeks. 

On my 3 month scan my kidney tumor had not only stopped growing but had reduced in size to 10.5 x 10.5 x 10, and my lung mets by 4/5mm. I was unbelievably happy with this result. I have my 6 month scan on Monday 11th November. 

I know right now it’s an unimaginable situation you find yourselves in, but once you get your treatment plan and pain medication sorted it will eventually become the new norm. The word cancer fills everyone with dread, but treatment has moved on so much in the last 5 years.

I have completely change my diet, I try not to eat to much sugary foods, I try not to eat any processed foods, I eat more fruit and vegetables than I have ever done before. I did some research in to Genuine Essiac T which I drink 3 times a day. I am open to any new trials that come along and will do any to help fight this terrible disease. 

This forum is full of people with different cancers and treatments who are unbelievably helpful. I go to Maggies the charity who have been fantastic with helping me with counselling and benefit advice and treatment advise. Maggies is also a great place to go and relax as well. 

The MacMillan nurse who comes to see me every week has also been so so helpful. The district nurses have also been great in helping me around the house and arranging my wheelchair (I struggle to walk more than 20 feet). There is so much help out there for you.

I truly hope your medication starts soon and you can start your journey in to halting the cancer’s progression. If you ever need a chat or a vent then please do not hesitate to come to this forum as there is always someone to listen. 

Take care and I hope we speak soon, in the meantime I hope you and your husband can find solace in the fact that there are lots and lots of people to help you find your way through this extremely tough time. X