Accuracy of biopsy

Just so this one doesn't go unanswered

Stop googling! Who mentioned sacramatoid?

I've done 7 years of this come July and not once have I actually understood what Sacramatoid is until right now when I've just googled it to find out what you have been terrifying yourself with.

It's not something I need to know. Right now it's not something you need to know - and based of your biopsy, something you never need to know.

Why would you trust google more than your team?

Trust you team. They want you to live. They want it as much if not more than you. Sounds hard to believe, but it's true. Their professional reputation is at stake. They want the very best for you. They are you best resource. Not google.

Breathe xx

It was something I read Jo re prognosis and have have terrified myself with.

my pathology from biopsy was ‘Chromophobe’ and just wondered whether my Consultant would be able to see it from my biopsy.

I am just utterly terrified about these results 

xx

You've already been told it's not aggressive.

And yes it would be seen in your biopsy.

But, as I said in your other thread, at the moment although you want to hear the answers that are positive, you're looking for answers that support your fears instead -which is natural with high anxiety levels. You have biopsy results, which you don't trust, you've been told it's not aggressive, which you don't trust.

You have a lot of questions. Mostly derived as a result of researching online. You've gone so far down the road of futur what ifs that you've lost now.

Write down all of the questions now. And when you get the pathology results ask all of them and write down those answers. Don't rely on remembering anything, write it down.

They are the answers that relate to you. Not the thousands of other cases online. They are not you. Moreover, those answers aren't coming from the people who are treating you - who know your disease - or now hopefully lack of disease, better than anyone else in the world does. Trust them. Refer to those answers.

We all know how hard this is. When buttercup01 said prepare for tough love - this is what that looks like. People in your family and friends group will be scared to and won't know what to say or even if to say. But you know yourself you're driving yourself to distraction and right now, you're looking for the worst case scenario. Why? Why would you hurt yourself so badly to think that way? If other people spoke to you and told you things you are telling yourself you would be devastated, possibly raging with them. 

Right here, right now, you have had a nephrectomy. You are recovering beautifully. You are almost certainly cancer free. You have been told that your operation is designed to be curative and you have been told that your ex cancer was not aggressive.

Stick with those facts. Because they are facts. Everything else is the devil that is google.

I suppose because I read into things so much.

I chased up the Consultant today and he hasn’t phoned me back yet? Why? Is it because the news isn’t good?

It‘s like emotional self harm. I can’t help it.

I’ve tried mindfulness and I just can’t switch off enough. I feel so stressed 24/7.

I often think that if I was alone it wouldn’t be so bad. But because I have an amazing Husband I feel so guilty. Like, why is this happening to him? It’s not fair.

I seem to forget everything I’ve been told.

My specialist nurse has been off for weeks and not having that contact is hard. I feel left alone and my mind is going 1000% miles an hour.

I am sorry to keep going on and on. You’re a great comfort.

I don’t know how I will ever get over this xxx

Bless you, you will.

You have mentioned your husband several times - make sure you talk to him and tell him all of your fears. You're very much in it together and he will want to help. If you are a generally anxious person my guess is he's used to "managing" that for want of a better expression, so he is literally probably the best person to speak to. Also, it's very definitely better out than in. And not out here - but out to the person that you're worried about - because they'll always have a better take on it.

If you do nothing else, put some music on that you like - not just quietly in the background, but so that it disturbs your train of thought - so that you could sing along to it. You sound like you are very much in your own mind at the moment and you need to actively get yourself out of it.

Your consultant hasn't rung back because he's busy. More so than normal. He probably has half a team because the other half are off having to isolate and our daft government hasn't figured a way to get them tested so they can know if they can come back or not.

In this situation no news is good news really does hold true. They don't hold off from telling you bad news, there are no delaying tactics - it's not like us trying to figure out how to tell someone something they don't want to hear. If you haven't heard back I'd work on the basis of no emergency, nothing to see here.

Fingers crossed you hear soon xx

Thank you Jo

I very much appreciate you taking the time to talk to me.

I have telephone counselling at 2pm so that will hopefully help me.

Thank you thank you thank you xxx

Jo

I heard today and wished to tell you the news given you were such a help to me yesterday.

As expected, stage 1, no aggressive features, no fat and no lymph node involvement.

Consultant anticipates a very low recurrence rate.

Now I have to hope and pray that that is true.

Thank you for helping me through the darkness of yesterday and I wish us both continued health and long lives

Sarah

xxxxxxxxxxxxxx

Hi Sarah

Wow! That really is fantastic news, I am so pleased for you xx

Now, in the nicest possible way, bugger off and make sure you don’t come back

Joking of course, but seriously, you’ve got through this - go and conquer the world, or at least your corner of it. Then come and tell us all about it. 

Today I did not conquer sourdough bread making. I’ll try again tomorrow

Sleep well. Truly delighted for you

xxx

Thank you Jo

I hope to do it all 

Thank you so very much for helping me in my darkest hours 

xxxxxx