Biopsy trial? Anyone been asked or taken part? - My Ovacome

My Ovacome

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Biopsy trial? Anyone been asked or taken part?

Izzystep profile image
16 Replies

Hi ladies. I have been approached to go on the BriTROC -1 trial. It's a trial for women who have had recurrence and they are looking at why, what, when, who, how etc....... They want to remove a small piece of the tissues in one of the tumors. I remember having a biopsy to diagnose the cancer and it wasn't very nice. Took a long time to heal and with the treatment I am having might make the healing process longer. I do want to help others but am a bit worried about having a biopsy when on chemo. Bleeding etc etc. Anyone out there with any advice or had this done please help. Many thanks as always. Izzystep xxx

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Izzystep profile image
Izzystep
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16 Replies

Hi there Izzy

.. What does your oncologist say I wonder? Love Tina x x

Izzystep profile image
Izzystep in reply to

It was my onc that suggested it. The CNS research nurse was there and gave me all the info on the trial and what it involves. I am always willing to help others in the research that will help others. I have 2 daughters so have a vested interest in anything that would find a cure. My only concerns the healing process, which I will go into more detail with when I meet or speak to the clinical trial nurse. I will keep you posted. Love n hugs Izzy xxxxx

vipervictoria profile image
vipervictoria

I personally would go for it - depending on the specific advice you have from your oncologist and surgeon, if they both think it would be OK, and if your treating specialists get the results, then the analysis might help you personally, and the information they get from the study outcome will hopefully help everyone with OC. Vx

Izzystep profile image
Izzystep in reply to vipervictoria

I am tempted because I tool part in the ICON8 trial when first diagnosed. That was weekly chemo, weekly blood tests, both of which have made my veins poor and including two times a week visits for blood and chemo. I am always willing to assist in any way but this time I am a bit worried because of bleeding and healing whilst on gem/carb. I will ask a few more questions before I make my decision. Thanks for the support. Love n hugs Izzy xxxxx

Madz profile image
Madz

There should be a research nurse attached to the trial plus a doctor ask them for more information and if there is anyone who is already part of the trial that you could talk to xxx

Izzystep profile image
Izzystep in reply to Madz

Yes there is a research nurse who I will be speaking to. Will write down all my concerns and questions before I speak to her. Love Izzy xxxxxx

in reply to Izzystep

The research nurses usually know far more about real physical impact and implications than the onc dies Izzy so I think that's the right course of action. I agree BTW - I believe we should participate as it all helps keep research moving. I would do this if...

Good luck

Love sue xxx

Shazican profile image
Shazican

I got approached by my onc when I was there 2 weeks ago asking if id be willing to hand over the remainder of my tumour to research .. as I was made aware when they remove them during op .. they keep part of it so they can test it .. if u have to start hormon replacement .. they tested it to see if my tumour was hormone based but thankfully itccame back as no .. off course I said yes .. I dont exactly need it now lol .. and if it helps them come up with a cure at least I've helped in some little way

vipervictoria profile image
vipervictoria in reply to Shazican

Very well put!!! I'd offer them mine except it's suspended in formalin and probably useless. Vxxx

Izzystep profile image
Izzystep in reply to Shazican

When I was first diagnosed I let them have anything they wanted. Fluids when I was drained, extra blood tests plus during surgery I signed to say they could have whatever they wanted. I wasn't going to keep them or need them. I feel like I have done my part for research and would love t help again, but just a bit worried about healing etc. I will look into it a bit more before deciding. Thanks for your support. Love Izzy xxxx

sarah1963 profile image
sarah1963

I am a big fan of trials so I say go for it. But we are all different so dont feel pressured into it.

They were talking about genetic sequencing on the news yesterday and that people might need counselling before they volunteer in case it came up with something nasty. We know the worst already so maybe we would be good candidates?

in reply to sarah1963

Hi sarah

Hope all going ok. Hopefully will hear about another trial next week. had my biopsies last wednesday.

Did send you a private message but I think it may have disappeared!!!xx

Izzystep profile image
Izzystep

I agree Sarah, we know what we've got so we are the best candidates. Will be taking advice from CSN before deciding. Take care, izzy xxxxx

Natalie1022 profile image
Natalie1022

I am all for the trials if you are feeling up to it ,ive had lump biopsy , lumpectomy then mastectomy,radio,chemo, reconstruction,and tamoxofen,, and know with four daughters i have been referred to genetics so really i feel the trials are vital and so important but dont put your health or wellbeing at risk,, ps ive now got a2cm folicular cyst in my ovary ive had the blood test and its negative but my goodness a fear i have had to deal with, but touch wood all is well has anyone else had cysts after breast cancerxx

Hi Izzy .. I'm not sure what I'd do personally in your circumstances .. so I'll imagine what my mother would have said to me had she been here .. First of all, you don't have to do anything that adds to what you're already going through .. I presume it's a laparoscope which carries its own risks. Your body is vulnerable and there are times when we have to guard all borders .. . However, there may be advantages for you personally as Vicky has said so it might be worth asking that question. I'm into my ninth week post op and still haven't healed and I don't know whether it's because of the underlying disease or because of general wound problems .. Love Tina x x

Izzystep profile image
Izzystep

Hi tina. I agree on both points. I would love to assist in research and did so in the ICON 8 weekly trial, which I think has made my veins so deep and hard to find, therefore had a PICC (which carries its own risk). I am in the mind at this moment to say no, because of the healing, pain, bleeding etc..... However, I know what Vicky means, it may hep me, many others and my own daughters, to find out why we get recurrence. I think I will sleep a few nights, talk to specialist nurse and my onc again. Take care Tina. Love n hugs Izzy xxxxx

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