News on Tumour profiling

[Jessica-DianeB]

This is now available on the NHS!!!!! 🎉

Not sure if it's across the U.K. But my hospital are offering it now. Hope this can assist many woman in finding targeted Therapy xxx

[Hidden]

That is fantastic news! I paid for it as it's not available here in Ireland on our Health system, not does private health care cover it.

Juliet

[Jessica-DianeB in reply to Hidden]

Was it if any use to you Juliet? Xx

[Hidden in reply to Jessica-DianeB]

Yes, the profiling identified that I had BRCA in tumour and I was on Olaparib for 3 months. Unfortunately, it stopped working and disease progressed again in peritoneum - I'm now another chemo drug - Cisplatin.......

Juliet

[85live4ever in reply to Hidden]

Hi Juliet, sorry it stopped working at least you gave it a try because you never know till you try it. I hope your next treatment works. Take care Cindyxx

[Hidden in reply to 85live4ever]

Thanks Cindy . I'm keeping everything crossed!

Take care

Juliet

[85live4ever in reply to Hidden]

Hi Juliet, we are all good at crossing our fingers & toes. We are great at wishing, hoping, praying & fighting for each other as well for our sleves.

I want to wish you all the best. I want to cross my fingers & toes, hope & pray & I want you to fight. Take care Cindyxx

[Hidden in reply to Hidden]

I see Juliett you are one step ahead of me, I understand that it is hoped that this will be roled out to all those diagnosed and those with recurrent disease in the future, depending on funding

[Hidden in reply to Hidden]

Hi Suzuki

Yes that's my understanding that hopefully it will be available on HSE but I don't know where negotiations are at. At the moment, even private health care won't cover it so we have a long way to go!

Juliet'

[Hidden in reply to Hidden]

Hi Juliet,

I'm also in Ireland, can you just explain to me exactly what this is and what it means?

Ann Nora 🍀

[Hidden in reply to Hidden]

Hi Annora, it is available from a hospital in Dublin and you should ask your gynae liason nurse or oncologist about it. I discovered its existence the other day but funding will be the key. The recommendation will go to the HSE and hopefully it will be successful

[Hidden in reply to Hidden]

Thanks for that,

I noticed your keeping an eye on everyone, you are so good.

Take care of yourself,

Ann Nora 🍀

[Hidden in reply to Hidden]

We had two lovely ladies Daisies and Ms Fitz who were brilliant for the blog and also we had the hospital here in Cork tormented well the CEO for better conditions for Oncology patients and waiting lists etc. Unfortunately they are no longer with us. Annie H is also brilliant at this and has helped improve services down here. I got involved with the PPI as in patient section of the Icorg and they are always looking for patients for workshops and ideas etc. I am able to do this at the moment as not on treatment. It helps me cope and keeps my mind from doing overtime on the what ifs.

[Hidden]

Hi Ann Nora

After Topotecan failed in February this year, (this was my third line of chemo) my oncologist offered genetic profiling with a company in UK. I agreed and had results within 10 working days from submission of tumour details and it identified that I had BRCA in tumour as opposed to in blood, which is genetic. So, Olaparib was suggested and I was on it for 3 months. It worked for a very short time, but then CA125 rose again and scan last week showed more progression in peritoneum. So, I'm back now on another chemo (Cisplatin) since last Friday. My onc is hoping this will put me in remission and he then go back to the report and use something as a maintenance treatment.

Juliet

[Jessica-DianeB in reply to Hidden]

Good luck Juliet. I am in a very precarious situation right now, it's horrid isn't it xxxx

[Hidden in reply to Jessica-DianeB]

Yes- it certainly is- we just have to keep hopeful. There are so many good stories on this site regarding various different treatments.

Juliet

[Solange in reply to Hidden]

Hi Juliet, I do hope the Cisplatin will do the job for you. Keep smiling. Love Solange 😊

[Hidden in reply to Solange]

Thanks you Solange!

Best wishes to you too!

x

[Hectoria]

My oncologist of course played it down saying only 3 per cent or something would be positive, but that doesn't seem to borne out on here at all. I have told her to go ahead and get me tested!

[Jessica-DianeB in reply to Hectoria]

Hi Hectoria.

Tumour profiling tests the actual tumour tissue for somatic mutations whereas the BRCA testing is looking at germline mutations in the blood.

There are cases where woman have been BRCA negative in their blood but their tumour tests positive.

The results offer information regarding targeted therapy. However be mindful this isn't always achievable as availability to the drugs varies massively xx

I'd push for it, as everything's worth a shot xx

[lorraine71-Australia in reply to Jessica-DianeB]

Hi Jessica, Thank you for your information it's interesting that the results may lead to targeted therapy and as you said it's worth a shot..Take care Lorraine xx

[Hidden in reply to Hectoria]

Hi Hectoria

The percentages I heard from the OC sites are that's it's about 10%, but I really don't know. I think anything is worth a try!

Juliet

[Hectoria in reply to Hidden]

My onc is always v negative and pours cold water on everything I suggest. I knew it wasn't 3 per cent, but didn't bother as she is always full of doom and gloom. S x

[85live4ever]

Hi Jessica, where in the UK are you? Does that mean you will be going for it?

I have mentioned it many times to my onc but I get fobbed off maybe they feel uncomfortable with us knowing as much as they do. I will be asking again it can't hurt the more we know about our cancers the better we can fight it. Thank you for posting it. Take care Cindyxx

[Hectoria in reply to 85live4ever]

Hi Cindy,

My centre offers absolutely nothing other than standard care, but I have requested tumour profiling and they have agreed. You can get PARP inhibitors if you test positive.

S x

[85live4ever in reply to Hectoria]

Hi Hectoria, glad to hear they have agreed to this, good luck.

I am being offered a PARP inhibitor because I have just finished my 3rd line of chemo. If this doesn't work then I am going to ask for tumour testing. If we don't keep pushing then we go no where. Thanks for posting take care Cindyxx

[Jessica-DianeB in reply to 85live4ever]

Yes I'm hoping to. I'm yet to have my Germline testing yet. I do so on Tuesday. Following that result I will be having the tumour itself tested.

I've recurred within 3 months of my 1st line treatment in my plural cavity ( new site ) after successful radical debulking surgery.

So I'm pretty gutted to say the least! Xx

[Purple-iris]

Thanks Jessica

Will definitely be asking my oncologist about this at my next appointment. Am being treated at Guys London . Where in the uk have you been offered the test ?

Love and best wishes Kim x

[Jessica-DianeB]

I'm in Staffordshire, UK.

I contacted 'oncofcus' first and spoke to them regarding tumour profiling, they were incredibly helpful, including sending me an anonymous case study of some results of a lady with ovarian cancer. This info I printed off and presented to my oncologist who ironically told me that NHS are now funding this. So it is definitely worth asking the hospital where you are being treated. The cost was £1500 to have it done through the above company. They use your existing tumour that is held by your hospital.

Don't EVER be afraid to ask. This is your life. That's why I find it easier to present information I've found. Even if it proves to be a lot of rubbish!

I will put up the address and hope that this is ok to do so xx

[Purple-iris in reply to Jessica-DianeB]

Thanks for this info . Agree with you totally , we have to be proactive and push and question .

This forum is amazing for sharing the latest treatments , trials and info .Thanks again for your post

Love and best wishes Kim. X

[Jessica-DianeB in reply to Purple-iris]

So true Kim xx

[85live4ever in reply to Jessica-DianeB]

Hi Jessica, what a good idea it seems to have worked for you.

I live in on the South coat UK. Where I am getting treatment is good but I do feel fobbed off at times. if I have some evidence to show them it might help. I will look up ' oncofcus, & see what I can sort out thank for posting. Take care Cindyxx

[Hidden]

Hi there yes tumour profiling is part of the future treatments so that treat,emts whether chemo or parps are tailored to give the patient a better chance of survival. It is hope that this along with genetics will help women in the future. It is not available in Ireland yet but with funding may come on stream

[Hidden]

Hi All. I've read the above posts. Please can someone clarify : is tumour profiling the same as genetic profiling? Thanks Pauline.

[Hidden in reply to Hidden]

No.

Genetic profiling(aka germline) is you and your natural landscape. This may or may not give useful information, especially if BRCA+.

Tumour profiling (aka somatic) is what it says: the body has misbehaved - is there anything special/different about the tumour which could be useful, eg BRCA+?

In my case genetic profiling showed nothing interesting; tumour profiling showed a mutation common in many cancers and some "variations of unknown significance".

To date, neither remotely useful in helping to plan treatment.

The main beneficiaries of tumour profiling, at the moment, as I understand it, are those where the tumour is + for BRCA+, even if they aren't germline. This enables access to drugs only allowed for BRCA+.

[lorraine71-Australia in reply to Hidden]

Hi Pauline, I've just had the tumor testing done I'm waiting for the results my understanding is if you had the BREAC 1 genetic profiling test done and it came back negative which it did for me.

So now I've been offered the tumor testing which is taken from the original tumor from surgery which was near 3 years ago, it had been banked at Westmead hospital.

The reason for testing the tumor is to see if the actual tumor has a mutation if positive it can help with targeting therapy to suit my treatment and give me the opportunity for other options so it would be good if it's positive..

My oncologist told me it's only a small % who are positive but worth the test.

I hope this has help.

If you would like me to send the copy from the information sheet from the team doing the test I can. I'm not home at the moment, at the beach with my grandchildren for the school holidays. Take care Lorraine xx

[Hidden in reply to lorraine71-Australia]

Thanks Mac & Lorraine. That helps. It's quite exciting the possibilities that are becoming available. I didn't know until I read it here a while back that our tumours are kept. I imagined they were incinerated.

I've had my BRCA testing done : non BRCA but a "rare variant" - as for the majority of women as far as I can tell. Will no doubt take a while until they sort out what all those rare variants are.

Thanks for offering Lorraine but I won't ask for your info sheet. For now, I just wanted to know about the difference.

Enjoy the beach - it's a bit of a hike from the Blue Mountains. I'm imagining you and the grandies caught the train. Hubby & self were living in Sydney all those years ago when the Granville train disaster happened.

BTW I'll get to putting "Australia" after my name ASAP. I did try it but thought I'd buggered it up. And since I'd already changed my profile once, I thought I'd best get out of there (since you can only change it twice). Might have to get hubby onto it - don't trust my skills in this area ! Best wishes to all readers. Pauline.

[lorraine71-Australia in reply to Hidden]

HI Pauline, I remember the Granville train disaster It was a mountain train I had friends on that going to work. it was a very sad day.

We have a house at Umina Central Coast, it only takes 2 hours to drive now with all the motor ways to the coast, we don't get to use it as much as we use to, I always seem to have appointments or chemo.

The weather has been beautiful the grandchildren have been in the water, a bit cold for me.

It's been a nice break but will be going home Monday as i start my Caelyx maintenance treatment. hope all is well with you take care Lorraine xx

[27-359]

Hi. I have been thinking about tumour profiling, but had my op over a year ago, and am not sure what happens to the removed tumour. Would I still be able to get it analysed, or is it too late now. Do they preserve bits of tumour do you think?

Jenny

[BellmoreBelle in reply to 27-359]

Jenny, they do. I've signed up for trials post-op and I asked where they would get the requred tissue sample from. They keep a sample, rather than the whole tumour. So ALL of us could presumably have the tumour profiling done when the appropriate treatment is being decided. I am surprised it is not routinely done - did it previously come down to cost? Why not submit a blood and a tumour tissue sample for genetic testing at the same time post-op and prior to chemo? Surely this will become standard practice, sooner rather than later.

[antheamary]

I had my op 4 years ago. I live in uk. I am hoping to go on a trial, so they have requested my tumour bits to test. So i would hop they saved everyones.

[Solange]

I do hope something is found soon to help you, Jessica. Love, Solange 😊

[Jessica-DianeB in reply to Solange]

Thank you Solange xxx

[Marieloiuse]

Hi Jess,

Thank you so much for the information. On the odd occasion I have asked about genetic profiling etc I've been dismissed. Not concerned for myself all these years later, but for my granddaughter and future grandchildren. I'm sure your info is gonna be of great help to everyone on here. Anything that can help with more targeted and tumour specific treatment has got to be good. Until that day (not too far off we hope) when we can kick this horrible disease into touch, every new development chips away at it.

Wishing you continued good health. Gorgeous family pics btw.

Catherine x

[Jessica-DianeB in reply to Marieloiuse]

Thank you Catherine, best wishes to you too xxx