Hello everyone. My name is Chris I'm 37 years old.
In November 2021 after a ultrasound scan for an unrelated medical problem, they found a 1.2cm tumour on my right kidney. The surgeon suggest that I got on active monitoring as it was so small, which I agreed to. I had my second CT scan in May and the tumour is now 1.4cm, again I'm still on active monitoring and due my 3rd scan in November.
I thought I would reach out to people going through this process as I don't have many friends or family to talk to. Has anyone else been on active monitoring for a period of time? I feel like my urologist isn't being detailed in my scan results and simply giving me a choice of surgery or monitoring. My first scan result was face to face and lasted 5 minutes, he seemed very blunt. My second results meeting was via telephone, again very blunt and just given options.
Generally I'm devastated, but I have lived with it for 10 months now, I'm scared I will make the wrong choice and if the tumor is cancerous will spread.
I look forward to meeting you all, and sharing and help you through your experience.
Thanks Chris.
What?! Sounds strange. Consultants these days are supposed to be really nice, build a rapport with patients and establish a trusting open relationship where any question or concern can be raised. My urologist was like this, although I only met him once, and my oncologists certainly are.
The good news here is that it's caught early, before spread. If it's cancerous then they'd be taking it out (assuming no spread elsewhere) but they might want to wait until it's big enough to remove, I believe. At some point people generally have biopsies, or some people have a [partial] nephrectomy based on the likelihood of cancer. Then after it's removed, they'll test it in the lab to find out if it is and what type. But people aren't asked to make these decisions with zero info, they generally get advised facts, risks, options, likely outcomes and so on. It's a big decision that needs a lot of info to make the right choice.
The advantage of active monitoring is that it can save the arduous experience of an operation, perhaps needlessly. You don;t want to be having an op unless you definitely know it's beneficial. Another advantage of monitoring is that the 3 month interval between scans is optimal, based on known growth rates. Then, as soon as you have two scans you have a baseline and a growth rate over time.
Mine spread before it was found. But I have discussed "watch and wait" both before my treatment started (no way!) and now as an option, as we have the cancer under control. My Q&A sessions with all my consultants are allowed to continue until I run out of questions.
Things that might help you - kidney cancer is slow growing. I think 1cm is quite a small tumour too. Mine was described as large at diagnosis and I think it's 4cm now, so that would put it at 5-6cm on diagnosis.
People on here frequently discuss the "is-it?", "isn't it?" cancer dilemma. It's not a position I was in as mine was diagnosed as cancer from the CT scan, but I can imagine it's an awful situation to be in.
But all these options and approaches, and pros and cons should be explained to you, so you know your team is working for you.
Anyway, hope all that doesn't come across as a lecture. Finally, I probably should have started with this, but I was appalled at the environment you had described, hello! Welcome, we're all here to support each other and to have a rant when we need.
Hi Chris firstly you have made a step I think that this forum is fantastic and the help and support from other members is great. I read other posts for almost a year before I made a comment. As I normally say do you have a Macmillan nurse as they are a good point of contact.
I was in a similar situation as my tumor was discovered after my appendicitis. After a couple of months I had a 5cm growth which with a consultation was decided to monitor another scan after 6 months same size, however a decision was made between my team to remove the tumor which I was happy to do.
My story is then after the operation t had a meeting with my consultant and my little friend had been having a party hidden by my kidney and if it had been left any longer it would have been on a tour of my blood stream.
Moving forward and everyone's story is personal to them. I had another CT scan today as I enrolled on a trial immunotherapy which meant an infusion every month. My results were supposed to be tomorrow but maybe delayed till I can see my consultant.
Last scan 3 months ago I had a moment and as a result was singing........
S Club 7 I am not ashamed to say.
It's the little things that will keep you going, certain things are out of your control.
Take care.
Mike
Thank you for your kind reply's, it's very calming to know that there are people who can offer support and share their experiences through this forum.
My last scan results I had over a telephone appointment which I thought was very bizzare? Again the urologist was very blunt, I had to ask him if it had grown and by how much. It was again a 3 minute phone call, all he told me that my tumor or mass was stable and that If I wanted the surgery it would be difficult for them to find. It's very frustrating I just want my urologist to be informative and offer some guidance,
Again thanks for your support, it means a lot.
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