Waiting on results

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Hello everyone,

I am awaiting results and I've been completely shattered mentally to be honest because of the lack of information from doctors etc. A little back story... I am a male in my late 20s and I have ever been quite cautious about my health and I had mild form of hypochondria I was thinking I could be ill etc and I was just going to get tested just in case had no issues whatsoever. My only "sin" has been smoking and it's an on off relationship... Anyway I have managed to overcome my health anxiety and I was starting to feel normal but there's been always that thing on the back of my mind saying what if there is something - I've had the thought of having cancer multiple times since a relative passed away from cancer, but I was trying to dismiss it and just enjoy life, because I was too young to have cancer....

Then I go to my GP last November for abdomen discomfort which was considered to be IBS, but I've explained to my GP my concerns and he sent me for an US scan. This is where everything starts to crumble for me.

I had the US scan and the same day I have a missed called from my GP, which made me think there must have been something off on it for them to call so quickly. 

Two days later he breaks the news over the phone - they have found a small lesion on your kidney, I will send you for urgent urology referral to rule cancer out. As soon as I hear this I start asking questions, how big is this lesion etc. He tells me it is difficult to say, so I ask him let's say it's a sphere how big would it be In terms of diameter and he goes 23/4mm - about an inch.

This is as far as it goes with my GP, then on the 29th of December I go for urology appointment where the doctor who saw me was dismissive did not answer my questions and when I asked what could it be he said it can be a benign lesion like AML or it could be cancer but they are not sure, hence the need for a CT scan and he says he will book it for me. To describe the lesion he used the word small located on the upper part of the kidney.

The what happens next made my heart stop for a moment, a few days after I get a letter in my mailbox from the same urologist - it's a referral letter.

The letter says - 43mm solid lesion with central vascularity appearance suggestive RCC

As soon as I read that I was in tears and I haven't been since I was a young lad. It is like the world just stopped spinning and no one tells me anything. I do not understand why my GP told me about and inch and the referral letter says 43mm suggestive RCC, so I do not know who or what to believe.... Like is it 23 or 43 why would they do me like this ?

After New Year I have called the urology department to check if there is a date for my scan and I was told they have not arranged it so after a few redirects I've managed to speak with the booking team and got it booked for the next day.

Few days after the scan I've called the urologist's secretary who told me they had my results but they need to be discussed by MDT and she emphasises "we are definitely seeing you soon" which again made me think it's bad news.

I just don't know what to think and what to do anymore, I got a letter for appointment on Monday and the person who is seeing me specializes open complex cancer surgeries and this made me lose all hope whatsoever, I just don't know what to do or what to think I've been so depressed the last 10 days that I just can't describe it I can barely make it out of bed and all I do is read online and it never looks good but what worries me is the things I've described above, the size discrepancy the wording in the referral letter and the way that secretary spoke to me, it's just so hard to be positive, during the day I can cope with it but in the evenings it's like someone is ripping my hearth out and I'm just scared because I can't process what is happening or what could happen, I have that grim feeling that it would be something bad.

I never had kidney issues only once I've felt kidney pain a few months ago in the same kidney and I didn't think much of it, my bloods and urine tests were absolutely normal both times when I had them done with GP and at the urology clinic...

Why would they refuse to be transparent with me in their current findings, why would GP and Urologist give me two different descriptions of the lesion based on the same US scan....

  • Hi, as an anxious person myself I understand all your worries but you must try and wait until your results have been discussed at MDT.  Take a step back and breath deeply. I think the secretary was just trying to reassure you by saying  you will be seen. Nothing more. I am pretty sure she knew your anxiety by your voice etc.  Try not to use Google etc. Nothing to be gained there but more worry. It may be best if you give the Macmillian team (number this site) a call, they are brilliant and can help calm your nerves a tiny bit. I have had a partial nephrectomy Feb last year and recovered very quickly. I went to Mexico in early June. I would maybe suggest some counselling with your anxiety as unfortunately with this type cancer you have to have regular follow up CT scans for many years  and blood tests to check for reoccurrence. We call it ‘scanxiety’ My first yearly scan is in two weeks. So if you can control your fears it will help you on a journey, like me and all the others on this forum who would rather not be on, to cope with a new future. Treatments are amazing and you will be well looked after. Good luck and stay positive but trust your health professionals. 

  • Hi there, just a quick note to echo what Cilla has said.

    I quickly angered due to discrepancies between what I was being told, and what I was reading. i should add that, for various reasons, I had 3 consultants look at my MRI result and provide their own takes on it. I think it was the hyper-vigilance/anxiety that drove that for me; I lost objectivity. It does ease somewhat once you are given a treatment plan; in fact, it was extremely helpful for me. So hold on for that.

    In the meantime, and I'm sure you will have read on other post, try not to Google. I did what you did and searched my consultant to check what his sub-specialism was. I thought 'knowledge is power' when I first came at this and Googled extensively, but it really did do me harm in the long run. 

    Wishing you the best for the next stages,

    Jonathan

  • Hello, my heart goes out to you, as I have 2 sons around your age and it does seem so unfair to have to deal with this at your age - it's bad enough for anyone! It's natural to feel shocked and distressed. But, as others here say, resist the urge to do any more research, as everyone's case is unique really, because there are so many variables. If it is cancer, which seems to have been hinted at, they will treat it. You are young and from what you say, generally healthy, so you have that on your side. Many people here have been where you are and are getting on with their lives and you can too. I hope you do reach out and call Macmillan. It's good to talk to someone objective who really understands what you'r going through. But I hope you also have family or friends you can talk to, it really helps to say your feelings out loud sometimes. I hope you get some more certainty soon about what will happen, I hope this helps you a bit. Best wishes and keep us posted.

  • Thank you for all the replies. I was having a really hard time before the appointment and once I had it they have pretty much told me what I was expecting that I have a T1bN0M0 tumor. The person whom I spoke with was quite nice actually and we really didn't have to go through much because everything he was telling me I already knew and I felt relax for some reason which is strange. Anyway, I've asked how confident they are it's the C word and his reply was he'd be surprised if it's not once they remove it. So I'm having a partial nephrectomy by then end of February. It's a 43mm tumor on the upper cortex of the kidney, it will be a robotic laparoscopy.

    It is hard to believe my diagnosis, I am not sure why but I am not much worried now. It just feels so unreal, and I can't make sense of why I am not worried I should be maybe it's because I've already went through everything in terms of emotions in advance while waiting for the appointment. I have a feeling that the doctor will indeed be surprised when they take it out, not sure why again, just my gut.

    Hopefully I have the surgery and it doesn't come back but who knows...

  • I’m glad to hear.

    These feelings you’re experiencing and thoughts you’re having  are normal. They may change, and that’s fine too. Just lean on your support mechanism as and when.

  • I think you'll probably be a bit up and down with your emotions - i can certainly feel very calm at times and it's as if it's happening to someone else and as if I'm talking about someone else when I tell people what's happening with me. I think it's the mind's way of dealing with the feelings. Which is good, as it's a relief not to feel upset all the time! But there will probably be times when you feel upset and that's normal. I would advise not to try and anticipate the outcome of what the lesion is. I'm not trying to make you worried but it's best to keep an open mind and just remind yourself that you are in good hands and expert help is there to treat you whatever the case turns out to be. Best of luck with your surgery.

  • Thanks, I agree with what you say, I am fully accepting my diagnosis and I am expecting it to be C as the specialist said. It is just exactly as you've described it like now - as if it's not happening to me, there were some episodes of wondering what will happen in future and I guess a certain bit of worry is settling in. However, my concern is the age that I've been diagnosed not the diagnosis itself there is not much I can do about it apart from treating it. 

    What bogs my mind is why at this age, kind of prompts me there is something wrong on gene level - I have a lot of moles and lipomas on my skin, most definitely you've not seen people with as many moles as me. I can feel my mind starting to ask the questions what if there's something new somewhere else at some point, kind of feels unfair but it is what it is. 

    I don't feel anxious or panicking still it's kind of surreal but I guess things will start to feel real once I speak to the surgeon etc. Hopefully, they do some genetic testing but this was not mentioned on the initial appointment, based on what I've read they should but I don't know.

    I hope that once it's removed this will be the end of it my understanding is the prognosis is generally good for the kind of tumor I have, various studies suggest that RCC in young adults is kinda different than elderly people and doctors should take this into account but I'm not a doctor so I don't know, not even sure whether I should be mentioning these thoughts of mine to them because for them is just another day at the office.

    For example, only around 65% of RCC is Cc in young adults, tumors tend to be more organ confined and lower grade but also sometimes can be quite rare C and aggressive, so I guess I just need to wait and see what hand I've been dealt.

    I get support from family etc, but I think they are over optimistic and I try to be realistic and kind of trying to accept that there's a chance that whatever it is comes back. Just not plan ahead and live in the moment I guess, all I know is that I want to live a long live even though I'm more on the depressed side of population.

  • Hello again. I would ask whatever you want, such as regarding the genetic testing. I know what you mean about people seeming overly optimistic. I felt the same, I want to know all the possibilities and to be realistic. But I have to admit I can tip over into pessimism sometimes! But hopefulness is always a good thing. And just keep on doing the things you enjoy as much as possible, distractions really do help you stop turning the bad stuff over and over in your mind.

  • Hi All, 

    Just venting... I have good days and bad days, though you've recommended I do not read I kind of read all studies etc I could get my hands on RCC especially in young adults. Well I have mixed feelings all I know is I'm kinda tired of it all just want to have the surgery and be over with it at least for a bit because I don't know what to expect in future.... It either comes back or it doesn't guess I will have to live and see what my case would be.

    It's just I have things I want to do and life to enjoy, what makes me sad is that I've missed in stuff the last 4-5 years to focus on work etc and now I regret it.

    I want to make it at least to my 70s but I just don't know whether I'll have this chance... There's still that gut feeling it might not turn out to be malignant even though docs said otherwise and the tumor is not the smallest - 45mm but I can feel it kind of slipping away.

    People around me try to be positive and all, especially my mum it hit her pretty hard too but she just doesn't understand, which is OK I don't blame her quite the contrary seeing her suffering because of what is happening to me, makes me feel worse.

    I just don't get it, how is this possible at my age, I'm not sad or depressed or idk. It's just a meh feeling and the constant question of how long I'm going to make it.

  • Could anyone share what their experience with the doctors was like, so far they've been treating me like a checkbox on a spreadsheet and they give me close to zero information. On the 22nd I saw a specialist after MDT meeting and he said I should be seen by a surgeon within 2 weeks, I did not receive a letter for the meeting at all and after trying to get a hold of them for days a secretary told me the surgeon will see me when he decides it's necessary which is confusing AF. I've tried getting the results of MDT, including the scans but I was dismissed right away the whole thing start to seem super sus I don't know what to do.