I was diagnosed two days ago. Confused and scared.

Hi! I can immagine how you feel. I had no symptoms but was told in A&E after tests and scans that I had kidney cancer which had spread to lungs and brain. I was totally shocked, I am not really sure I was taking it all in. Initially I was in hospital for a few days for more scans and was put on steroids to help with swelling. I then returned a few days later to have a craniotomy. A few weeks later I had six sessions of stereotactic radiotherapy to the brain. In January I began a course of immunotherapy, the early results of which have been encouraging. I feel I have moved on a lot from that first scary diagnosis. I know the cancer can’t be cured but I try to follow my team’s guidance and advice as best as I can. Of course I have my low moments and get fed up with the side effects but just try to keep looking forward. Gradually I am coming to terms with it all and learning to live with my cancer. I hope this helps. Rest and enjoy time with your family and friends and hobbies/interests.

Hi Marigol,

So sorry you have had a diagnosis, and welcome to this huge caring reassuring community that none of us really would have wanted to be a part of. 

I am on my second cancer. First was Endometrial, two years ago. Low grade low stage and no adjuvant treatment needed. Second, was my recent partial nephrectomy. Due my first 6-week follow up next week but I have had the histology and yet again have seemingly dodged a nasty bullet: all taken out, clear margins, low stage and low grade and no adjuvant required. (Unless he changes his mind next week! but he sounded pretty certain in his letter giving me the histology a couple of weeks after the surgery.)

I was 62 when out of the blue my first cancer happened. (Kidney lesion was discovered during scans for that one, and I have been on active surveillance for two years) Never had anything wrong with me in my life other than the usual illnesses. Never been in hospital, never had surgery. Thought I was completely healthy. I still describe myself as "fit and healthy" - I am just into obesity category, but fit due to my active physical job, and healthy because I still rarely get a cold, never had flu or Covid, have an excellent immune system and no other co-morbidities (no diabetes, for example) and now that I have had surgeries to remove cancers, no further issues (so far) resulting from those. 

My first diagnosis was told to me by a very blunt GP over the phone when I was on my own walking up to town to do Christmas shopping. She said "from your blood test, it looks like you may have womb cancer". Came out of the blue - needless to say, I was in shock and my Christmas shopping didn't get done! - and the second one, I was told at first it was a kidney cyst and I wasn't at all bothered - until the next letter came through and specified it was a Bosniak 4, at which point I looked it up and was horrified!! But I then had plenty of time to work through this, because they weren't going to offer surgery on that whilst I was going through and recovering from my full hysterectomy.

So I had lots of time the second time, to come to terms with it.

The first time, it was such a shock that I was in denial, effectively. And looking back, I describe that time as a Bereavement: I was grieving the loss of my 62 years of near-perfect health! (My kidney nurse liked that description, when I told her that was how I had been.) 

So I worked through that bereavement and by the time it got to my second surgery (kidney) I felt I was becoming an old hand at this, albeit an unwilling one!

I have to say, I don't have family. I have a live-out partner; we have been a couple since 1979! He is technically my next of kin. I have a very, very good neighbour/friend I can share almost anything with. My dogs are my family and I couldn't cope with anything without them in my life. I don't share my health problems with most people. Work, had to know of course. I have fairly good friends who still two years after my first cancer, don't know I have had health problems! This is not usual for most people, as I have to emphasise that if you have supportive close people around you, do consider using them to lean on. But it's just the way I deal with it, as I have always been very independent and private all my adult life.

The other thing I did - and it wasn't conscious, it just happened - was split myself into two. There is the person I have always been, all my life - the healthy, happy, fit person. Then there is the person who went to have surgery for womb cancer and then went to have surgery for kidney cancer. It's like these are two separate people. I think it's linked with being in denial, really. But it has saved me from a lot of tears (I never even feel like crying), a lot of terror (although I did get some panic attacks around the time of my first surgery; none at all at the time of my second one), and a lot of other emotions that I don't have time to allow myself in my busy life. I might have felt very differently had I had ongoing treatment, or higher stages/grades, but as it stands, I see this as having saved me from a great deal of worry over something I cannot really do much about. (Cancer diagnoses)

It is just the way I have dealt with this all, and I haven't yet met anyone else who has dealt with theirs in quite the same way. I really do feel like I am two different people living through this stage in my life. 

I appreciate that it might not work for anyone else, and also is maybe not the recommended way, to act like an ostrich! (Although, that's a simplistic way of describing it and isn't quite what I am doing) I think it arose from the fact that I have been so healthy all my life, and something in my subconscious refused to allow the loss of my health to define my life, and certainly not my future. 

I also each time looked ahead...to the point at which the surgery would be over and I would be back home, with six weeks off work to look forward to. I created a box of books and DVDs I hadn't read/watched, got in lots of easy-cook food plus a few treats, and visualised myself resting at home and having a relaxing time. The good weather, on both occasions after my surgery, has also added to my feeling of being "on holiday". The two days in hospital would be a mere "blip" in my life and then I could get on with the rest of my life...even not knowing each time for sure that this would be so, just thinking about it being so, was encouragement to me. 

The take-away from this - given that we are all different and all cope in different ways - is perhaps, to surround yourself with whatever or whoever makes you happy, content, relaxed, and loved. And the other thing, is that we are so fortunate these days to have modern medicine and technology which means that the Big C is no longer a death sentence, as it once was years ago. Very many people live a full and even long life with cancer, even when it's a higher stage or grade. Enjoy the present, look ahead to the future - and yes, a diagnosis is very, very scary but try and keep positive and hopeful, because this is ultimately what will carry you through this diagnosis and beyond.

Sending you lots of  

Hi Carlo,

I feel after read your answer that life is very brutal sometimes.

I still don't know anything, expect that there is a big ball on my left kidney and a small on the right.

It came as a very nasty surprise, I had no symptoms.

What do you think of biopsy? I will have one end of May. Did you have one?

Anyway, thank you for your reply!

Hi, Maite.

your letter is an absolute joy to read, thank you!

I am 71, and also thought of myself as fit and healthy.

So the diagnosis was a punch to my face.

But I will fight, whatever comes my way, I have to.

Unless the doctors say no hope, no point for fighting.

l'll know next week, consultations and talks by telephone.

Anyway, you are my strength and hope for the future! Thank you! 

You sound beautifully positive now. Hang onto that! The doctors will not say No Hope because there IS always hope. There's never "no point in fighting". Partly, because all the time there are new treatments being developed; and some are invited onto trials of yet more new treatments. I am sometimes shocked to read other posts where the person has maybe three cancers, or end-stage cancer, or several co-morbidities along with a double-whammy of cancers...and they are still here, still fighting, still largely positive, and have adapted their life accordingly - for example, they may have extreme fatigue but still find joy in things they can do without needing to expend energy they don't have. 

I never realised until I came here, just how many are dealing with such huge burdens, but living admirably and very contentedly despite this. 

One thing you need to know about kidney cancer: usually, it's a slow-growing cancer. There are a couple of exceptions, I believe, but those are the rare types. (Like, 5% or less of total kidney cancers) So your lesions may have been growing there for up to a few years and they may only grow a few millimetres per year. Until you have histology, and perhaps clearer scans and tests, nothing is clear, but that seems to be the general trend. Which can be reassuring; and also, although it's not categorically the case, often when you have no symptoms it may be an indication that you may have an earlier stage or lower grade of cancer. 

Re: biopsies, some surgeons prefer to do this first, and others prefer to simply do the surgery and test afterwards. That seems to depend a lot on the individual surgeon, on the health authority, and on all kinds of other variables such as age, health/fitness and what is seen on an initial scan. Mine wanted to go straight for the partial nephrectomy, but I've come across quite a few people here who had a biopsy first. There's also several ways of treating kidney lesions at the onset. They may want to watch and wait - active surveillance, six-monthly scans. They may suggest alternatives to invasive lesion removal...I don't know much about ablation but I think that one is less invasive than removing the whole lesion and a piece of kidney. 

Try to relax a little in the meantime, whilst you wait for your consultation. Easy to say, I know, and not easy to do....but, carry on with your normal life and plan yourself a few treats as well. Waiting for an outcome is the worst time ever...I can relate to those here who have said that once they actually found out what they were dealing with, had been given a treatment plan, and as in my case had had the surgery where required, they felt a lot of relief. It's the Unknown that gives us the most fear, and once it's no longer the Unknown but becomes the Known, the fear often eases. Feeling in control is also important - you cannot control what has happened to you, but you can control how you deal with it, so discussions with the consultant and maybe nurse, and having your worries and questions addressed, and being fully involved in your treatment plan, gives you that control. 

Keep us posted. 

Hi Marigol

I've had a biopsy for the kidney and breasts.

The kidney biopsy was ok.i had to lay down on my front.they gave local and I didn't feel anything apart from yanking a bit.i guess each person is different in pain thresholds.

After u have to stay still for a certain amount of time.that depends on what the person who does the biopsy thinks on how it went.

Wishing you well .

Hi! You make a very important point about the Known and the Unknown. Finding out, hearing the diagnosis, is somehow more scary than what comes after. Hearing I had kidney cancer which had already spread to lungs and brain was one of the most devastating things I have ever had to hear. That was October 2024. Since then I have had a craniotomy, stereotactic radiotherapy and am now on a long course of immunotherapy, early results of which are reassuring. The cancer is incurable but I see a way forward for me now despite the fatal hour which seemed to have struck seven months ago. Take care, everyone. 

Dear Maite,

first thank you for your kind and encouraging words.

I'll have my biopsy soon, and hopefully start whatever needs to start.

the most painful thing I have to deal so far is my daughter deep despair. I try to show my most positive  face, and it's not all pretended, I really trust NHS, let's go, let's do whatever they decides as a must. ( Although the biopsy scares me a bit ) 

Try to live a normal life, but it is more and more tiering .

Thank you, dear Maite. How are you anyway?

Marigold

Hi Muvva,

thank you for the little encouragement, I really needed.

I'll have mine in 20 days. But before there is some consultation about the biopsy , I did not understand , why, what is the point.

How do you feel anyway, Muvva?

Thank you, Carlo!

You are very brave, respect for your courage! I will look up you in my dark hours in pain and despair!

How are you feeling?