August 30, 2012 at 6:54 pm #291
Hi, I am interested to know what screening people currently get and also which hospital/genetics department you are under for this. I saw it mentioned on another thread that a list would be started but I have not managed to find it.
[b]Hospital:[/b] Newcastle Hospitals/Centre For Life
[b]Child Screening:[/b] Quarterly abdominal ultrasounds
[b]Adult Screening:[/b] None
I no longer get yearly breast MRI’s now I have had two mastectomies but I am uncomfortable with this and will be challenging this.September 4, 2012 at 1:16 am #292KarenParticipant
I have been up to Manchester today to meet Professor Gareth Evans at the Christie Hospital and I must say I was really impressed with him. He has a wonderful manner in the way he explains things to you and seems to have a very good knowledge of the subject. Not only this but he is also arranging full body MRI Scans as a clinical service if you are a patient of his. To date 4-5 patients have had these scans and it is only a recent thing that has been set up. You do need to be referred to him by your doctor and visit him in Manchester as I have done today so that he can arrange for the scan, which again takes place in Manchester. He is now arranging my first scan for me hopefully to take place prior to my surgery. The scans will be carried out on a yearly basis.
He also explained to me about the research programme and that patients having the scans will be transferred to this once it is up and running. It has taken 7 months of being told no by others to achieve thiis but now I feel I am finally getting somewhere so if you do not want to wait until the research programme get your doctor to refer you to him and he can sort this out for you.
I also get colonoscopy through the clinic in Birmingham but only once every 5 years.
Hope this helps.
Karen xxOctober 20, 2012 at 2:10 am #314
Just a quick update from me regarding screening. I contacted my geneticist to request more screening, in particular MRI’s, but was again told that they could not offer any more than we were getting which is not a lot. So I asked to be referred to Manchester where I now have an appointment in a couple of weeks. Fingers crossed we will get something more from them. XOctober 22, 2012 at 11:47 pm #318PanKeymaster
That’s good news. Let us know how it goes!November 8, 2012 at 1:25 am #322
A quick update from me. I had my appointment with Professor Gareth Evans at Manchester earlier this week to discuss surveillance options. The appointment went well and I am now awaiting an appointment for a baseline Full Body MRI. Following this I will then sign up on to SIGNIFY. So for me this is fantastic as I am currently not getting any screening whatsoever.
Unfortunately there was nothing more that he was able to offer for my children. He thinks the quarterly abdominal ultrasounds are a good idea so we will continue on with those.
He did say that no lump/pain should be ignored and MRI is the way to go which is great for my sanity. My oldest daughter (6) has a little lump on her collarbone, not sure if I have mentioned it on here before, anyway I first noticed it in August and we were seen pretty quickly by our Paed Oncologist. She said she didn’t know what it was but was sure it was nothing but if it grew significantly then she would see us again. So in October I was still concerned about this lump which although not necessarily any bigger I thought was changing. We went back to the Oncologist to request an MRI. The oncologist was [b]very[/b] reluctant to agree to this and tried a number of times to talk us out of it for different reasons. To be honest I came away feeling like she thought I was being neurotic and unreasonable even though I am just looking for some kind of concrete answer. I can’t help it if somebody, however experienced, ‘thinking’ a lump is not something bad is just not enough to put my mind at rest. Professor Evans kindly looked at the lump and said he didn’t think it was anything serious but that it needed an MRI. Thank god!!!! I’m not so neurotic and unreasonable after all. As Professor Evans said the best prognosis comes from early detection and cutting the tumour away before it has a chance to spread – this to me, and I’m sure everyone else on this forum, is just common sense which makes it more annoying that we have had to push to get this MRI. I spoke to our geneticist today about my appointment and she was really happy when I told her this as she said she can now use this in helping us to get the right screening at the right time in future. I’m very happy about this. 🙂
Something else Professor Evans said that I found interesting was that as well as radiotherapy being very dangerous for us in terms of future cancers there is evidence to show that it doesn’t even work very well in people with TP53 problems. I am SSSOOOOO pleased that we decided against it for my son now as not only would it have massively increased his future risk but it might not have even helped in the short term either!! Nobody else had mentioned this to us so I am happy to have found out about this.
Another thing of interest that he told us was that once a child gets past the age of 4 (ish) the risk of developing a tumour decreases quite a bit although it then starts to climb again in mid-late teens. This gives me some hope for us as my children are now 7, 6 and 3.5. Obviously the worry will never go away and will always be hovering close by.
it looks like my quick update may have turned into a mini essay, oops, 🙂
Anyway, I’ll update again when I or my daughter get our awaited MRI’s. xxNovember 8, 2012 at 10:56 pm #323PanKeymaster
That all sounds really positive – and as Professor Evans said, vigilance is the key here. Hope you’re feeling a bit less stressed after that. keep us posted – especially about the SIGNIFY trial.
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