Finally my genetics letter

Hi Lara Lou.  Wow this does sound confusing doesn't it, what a disappointment when you were expecting a clear answer.  Does the letter have any contact details, for someone you can phone or email or write to, to get some clarification?  Do you still have a CNS at your hospital?  Perhaps the CNS could advise you how to take this forward, as I expect they would have come across genetic testing with other patients.  Is there any way to find out who the genetic testing people got the sample from, perhaps that department could shed some light on what the sample was?  Sorry you still have no clear answers.  You must be feeling so frustrated.  Wishing you lots of luck to get this sorted out.

Heya, 

As I said to you elsewhere, there are all sorts of scenarios that might or might not have happened. No-one here knows what happened, and we could all come up with a different guess and still be wrong.

Right now you have three options. 

1. Let it be. Accept what has been said in the letter and move on.

2. Phone the number on the letter and ask for an appointment with a geneticist to ask all the questions you have. 

3. Call or email PALS and ask for their help in finding out what's gone on. Though they'll probably only arrange an appointment with a geneticist for you.

So it's up to you. If you need a definitive answer on the genetics issue, then you need to be proactive and ask for more testing and gene mapping. If you want answers as to what they were playing at for 14 months, you need to be proactive and find out. Unfortunately, these aren't questions we can answer, only be there to cheer you on and give you the honest truth.

As for your checks, you chose to not have them as frequently because you were working yourself into a state each time an appointment or test was coming up.

As for being left on your own, yup. That's life. The doctors aren't going to be there, forever doing checks and followups when there's nothing wrong with someone. The poor NHS is far too overstretched as it is, trying to see people in desperate need of one thing or another. So once you're physically fine, you're sent on your way. And if a problem comes up, you go to your GP, or you can self refer back again in some cases.

So as your cancer is gone, you've no complications or side effects from the op, you've chosen not to be checked as frequently as they suggested, you're all good and have no need of a Gynae. 

So now it comes down to picking one of the three options above, unless anyone else can think of any other practical suggestions, and going for it. 

Whichever one you pick, good luck, and you know I'm there if needed. 

Lass

Xx

Thanks little runner, I know no one here can give any answers but I just like to hear others opinions, I might email my cancer nurse tomorrow I’m Probably  just disappointed because I was hoping for an all clear letter lol, oh well such is life, how are you doing hun? X

Lass I know no one can give me answers but I’m entitled to ask others opinions, because I know sometimes I see  things differently, As for the checks yes I hated them and yes I got stressed but I tell you now I was willing to go through all that every time and would never havre missed an appointment , I was signed off it was not my choice at all, you know as well as me that we don’t get a choice, so you are wrong to say I chose because I actually chose nothing of the sort, and I have cost the nhs nothing for 46 years, I never went to hospital rarely to the docs etc etc and have only been in their care for about 4 years, I have paid heavily into the nhs and I admire and appreciate everything they do, I am the first to moan about time wasters, I never even wanted these tests, but they did them and all I wanted was an answer, I don’t think that is to much to ask, but do you know what, I don’t even care  now, I’ll just let it go and free up their time, (I like to do my bit for the nhs after all) please do not reply to me on here Lass, if you have something to say please say it in the other place as you put it, because now I just feel like an idiot 

Heya, 

Of course you're entitled to ask for opinions, the problem is though, the questions you're asking aren't ones that can be answered with opinions. As I said above, everyone could come up with a totally different guess as to what happened with your samples, and they could all be wrong, or one might be right - but in a sea of wrong answers none of us will ever know which is which. So if you really want to know what happened, then you need to go back to the hospital and ask. If all you want are guesses then here's mine.....

An alien came down from the planet 24601 and removed your sample. This is because you are a genetically superior being and would have been found out had they tested your real sample, and it isn't your time to be revealed as such yet......

As for the checks, I must have misunderstood you at the time, Sorry. I thought you had a chat with the consultant after a panic attack had you leaving at first, and you both agreed it was in the best interest of your mental health that you were discharged. Especially because all the checks were clear, so he saw no reason to put you through all that. Because I've certainly been given choices about check ups, across lots of my ridiculous health issues. Lol. So it didn't seem unusual when you talked about it. But I guess I picked up on what you were saying incorrectly.

And noone said that wanting an answer was wrong. You're entitled to much more than that letter said as I said before. An apology for a start, because testing a sample to find the cancerous cells ready for genetic testing, doesn't take 14 months. I'd say a month, 2 at most if they are busy. So what have they been up to for the last 12?!

If I were the one who got the letter, I'd have tried to ask for an appointment with whoever sent the letter, or one of their colleagues. If they'd refused, I'd have written it all out in an email and pointed out how atrocious and unacceptable this was, then sent it off to PALS so that I could get an appointment to ask wtf had been going on. 

And there's no need to feel like an idiot either. Noone thinks that of you here. Not even a little bit. 

Lass

Xx

Lass maybe I used the wrong word by saying opinions, maybe I should have said let’s have a discussion either way I just wanted to talk to someone on here and hearing different ideas is what I needed, I was never gonna hold anyone to ransom if turned out to be wrong advice,..and yes you were totally wrong, I agreed it would help me mentally but that was only after I was struck off, i had no choice at all which is why I said To you I might get my dr to check me for the other two years why would I do that if it was my choice.... I’ll get in touch with my cancer nurse tomorrow 

Hi LL,

ill start with a pre disclaimer that this is my opinion and my science / understanding is patchy lol! 

I think I remember you saying that your cancer cells from the removed sample were microscopic, in that you didn't have a defined tumour? Have I made that up lol? My memory is terrible. If that's the case it could be that the whole cancerous part of your womb was removed as part of the histology testing and there might not be any cancer left in the sample that they have? 

I had a tumour that was 7/8cm x 5/6cm so when they sent off for a genetics sample they would be more likely to get some cancer cells with it, as it was visible to the eye and the initial histology wouldn't have used it all. I'm thinking of my reproductive system and tumour sitting in a jar in a basement somewhere getting sliced for testing, what a thought!

They done the same thing with me genetics wise, in that they didn't test my blood, they looked for protein markers in my tumour, they didn't find any protein markers so they didn't do a genetic blood test and have assumed I don't have a genetic flaw. I had an appointment in autumn 2017ish and got my results in early / spring 2018, after chasing them up a couple of times. 

What im trying to say is that my test was inconclusive too, so I don't think a yes or no answer is possible unless they do the full genetics blood test.

i think the chat with your CNS is a good idea to see what you want to do next and whether you would like a full test, or not.

lots of love 

xxx

• Hi aria thank you so much for your reply hun, I was only ever told I had stage 1a grade 1 cancer even after histology, it was only others mentioning the size that made me ask what size mine was, I was told my cancer was cellular, I was not sure what it meant and assumed it meant still in the cell stage rather than being a mass, so yes you are right if that’s what cellular means, I did mention to someone I wonder if it was because of that, which is why I was happy to accept it and happy at no screening, but after she gave me reasons what else it could be like someone else’s sample or lost sample it then made me start thinking different.......as for the blood test ...they took blood but have not even told me what that showed, these tests were done in July 2018 and my result or non result came September 2019 , I honestly thought that you had got a clear answer for lynch syndrome, I didn’t realise that your was never carried forward, so maybe it’s the norm then, but why waste all that time taking blood etc unless they only do it if something really odd shows in the blood, it’s all guessing I suppose but reading your reply makes me realise that  you probably never get the answer as cut and dried as I expected so thank you arla xx

Hi Lara lou xx it sounds like a really confusing result and also odd-, I’d be bamboozled too, and would want to understand what had happened. It seems odd it took so long, but on the other hand none of us know the timescales of these things unless we are working in whichever department  is being talked about. I’d be asking for an explanation and it might be that there’s a simple reason that will put your mind at rest. I hope so. It’s entirely ok for you to ask for opinions, that’s absolutely what this site is for, discussion, empathy and listening to what someone is feeling. Please don’t feel you are being left on your own xx

Hey LL,

They took my blood too, a big tube of it, but they didn't test it as they didn't find the protein markers. I had the blood test first, then the meeting with the genetic counsellor, then they done the test of the sample and after that I got the results.

To be honest the whole experience upset me as I, like you, assumed I would be given a definitive answer, especially as they had the blood sample, taking it first gave the impression that they would actually use it and there wasn't a question about the testing taking place.

I hope you can get some answers as to why it took so long 

lots of love

xxx