My visit to UCLH

[VickyEm]

Just wanted to let everyone know how I got at my referral to University College London Hospital.

I was referred by my Oncologist regarding being referred for the PARP inhibitor trials, and I suppose I was just expecting to be told whether I was suitable or not, but it now looks like what I am actually getting is a complete second opinion. Interestingly the Prof seems to think that surgery is the best way forward, if it is possible. I have been being told for 3 years that surgery is not going to help me so I am encouraged that he is looking at my case with 'fresh eyes' even if he does come the same conclusion that it is not possible. So I get to have a PET MRI scan, and UCLH have the only one in the country! (I feel quite spoilt )

If the surgery is not possible he still thinks I should have a go at the PARP trial. He has looked at my pathology from 2005 (1st recurrence) and says that he thinks that mine is a low grade cancer, not high grade as I had previously been told. He was also interested in the BRCA testing I had at the Marsden in 2006. Whilst I don't have either of the BRCA mutations that are known ( BRCA 1 and BRCA 2 ) there is something wrong with my BRCA gene, but its not a mutation they have identified yet so its called a 'variant of unknown significance'. Although he has no evidence of PARP inhibitors working on someone with low grade cancer and only the BRCA variant he still thinks it could be worth giving it a go.

All in all, I was really pleased with the consultation. I really feel that the Prof is looking after me. I was half expecting just to be told I wasn't suitable for the trial and being shown the door (which is essentially what happened when I went to Bart's last January) I will go to see him again on 3rd September, so even though I still don't know what is going on, I feel quite content as there is no immediate rush for treatment.

As we all know, the waiting is the worst bit, but I am well practised at this over the past 14 years and so I shall take my usual stance of not allowing myself to think about it and then I can't worry about it. I shall be keeping myself busy with decorating the house and enjoying the beautiful weather. At the weekend I went camping with my walking group. On the Saturday we walked 14 miles from Beachy Head, westwards along the Seven Sisters. Then dinner in the pub and a bit of stargazing back at the tent, managing to see a few perseid meteors. On the Sunday we walked the 3 miles to the train station with all my kit on my back and that was where I bid my friends goodbye as I was rather tired by then!

Take care all. Vx

[Pimkin81]

How fantastic to get a total review of your case and a fresh pair of eyes. Hopefully they will come up with a new way forward but sounds very positive in any case. I have low grade cancer so would be very interested to hear about treatment trials etc.

Claire

[wendydee]

Good news. That sounds like such a heartening response, Vicky. What a blessing you went to UCLH. It's really interesting to hear about all the new variants on the perception of possibilities for treatments. It must give so many more women hope. Keep us posted...it goes without saying, I hope it all works out really well for you.

Love Wendy xx

[Hidden]

Sounds like a marvellous fresh run Vicky, so pleased for you!

Love

Sue xxx

[Hidden]

Hi Vicky,

Just sending you my best wishes love x G x

[Hidden]

Sounds really positive. I've heard that ULCH is one of the best places to go. My oncologist has great respect for the gynae-oncology unit there. Hope the treatment you get - whether surgery or the trial - has a good result. Cxxx

[ScottishMisty]

I was treated at UCLH in 2009 and have to say I felt from day 1 that I was treated with such respect and positivity from all the team. I know there has been changes there since then but I have heard they are positive changes. Wishing you all the best, Sheila x

[juliaflan]

I am really pleased to read the positive reports of UCLH as that is where my daughter is being treated. I have no complaints so far they have been excellent. She has received her first 3 days of BEP chemo and I won't say she enjoyed it but the first two days were bearable and she spent most of the time playing pool and giving the nurses and support staff henna tattoos. The bleomycin -the final drug made her very sick and we are due back tomorrow for another dose. We will also be at UCLH on 3rd September for yet more 'blinkin' bleomycin.

[VickyEm in reply to juliaflan]

Sorry to hear your daughter has been so poorly on the 'blinkin' bleomycin, but lets hope it does the trick.

[harley]

It is fantastic news to have a pair of "fresh eyes" looking at your situation, I often feel that it is just a case of "If it comes back we have a whole menu of things we can try" . Old hat and nothing new in the last 20 years.

Best wishes

Joanna

xxx

[Hidden]

Hi there Vicky...

I'm low grade too though I'm stage IV. I've been told that I may be eligible for a PARP inhibitor trial too but the only thing is, I don't have a tissue sample. Some of the original tissue was taken at diagnosis to check for BRCA1/2 but the test came back negative. I wonder if you had a second look surgery to get a new biopsy to look at a way of personalising your treatment and that the new BRCA1/2 test can show abnormalities in the gene even if a person is negative? Love Tina x

[VickyEm in reply to Hidden]

As far as I know, when I was BRCA tested in 2006, they used the tissue sample from my original 1999 operation. They should still have your original tissue sample somewhere so getting it re-tested shouldn't be a problem. Vx

[VickyEm]

Thanks for all the good wishes, I shall of course keep you all informed of what happens next. Vx