Independent Cancer Patient Voice Course - The Biology of Cancer

[Whippit]

I wanted to share with you an extraordinary opportunity I've had recently which was to attend a course on the Biology of Cancer at Barts Cancer Institute, Queen Mary's, University of London.

The course is run by a group of amazing people who encourage patients to understand more about cancer. Their aim is to improve existing treatments for every cancer patient and to develop new treatments by bringing patients’ voices into clinical research.

The course was the third of its kind. It was a residential course delivered over 5 days at the Barts Cancer Institute. I was quite nervous before I joined the course as I'm a science dunce. I studied Biology A Level at school but that was when biology was about cutting up various animals and plants. DNA structures and molecular biology were the stuff of science fiction in the 1960s.

We had lectures every morning from 9 to 1:30 delivered by various leading academics. In the first two days we covered the Cell Biology and Molecular Biology. It was a bit of a shock but with the infinite kindness, patience and a lot of enthusiasm on the part of our teachers we all managed to grasp the principles to some extend or other. In the afternoons we did practical work in the lab and progressed from the first day learning how to measure and weigh to an incredible observation session when we watched a leading Histopathologist examining tumours in breast tissue and reporting back to the surgical team to advise them of any additional work they needed to do before finishing surgery on the patient. We isolated and observed our own DNA, and on the final session detatched cell receptors in tumour tissue - the receptors which are central to clinical trials investigating PARP inhibitors. The remaining theory lessons covered what goes wrong and why cancers develop, and then an overview of a number of site-specific cancers including ovarian cancer.

There will be another course next year and you can check out the VOICE website at independentcancerpatientsvo... to see what they do and details of their courses. It really is an opportunity of a lifetime.

[TrishLey]

Thank you so much Annie for sharing this with us. It sounds fairly intensive, I hope you can have a rest now.

You are such an inspiration to us all.

xxx

Trish

[Whippit in reply to TrishLey]

I just hope that other women/men on this forum can benefit from the course another time.

Time for a bit of luxury in my own home. Can't quite decide what to do first! xx

[Anitaalmond]

Hi Annie. Nice to hear that you found the course beneficial and worthwhile. It sounds like it was very well organised but I bet you will be glad to get back to your own bed and shower. Thanks for the info and link, I will have a little read later. Xxx

[Whippit in reply to Anitaalmond]

Ah Yes! I didn't mention the Student Halls of Residence at QMUL !! Still we survived! xx

[Lily-Anne]

I'm a bit of a chemo cynic, did the course identify whether chemo is beneficial long term? I'm at quandary mode right now.

LA xx

[Whippit in reply to Lily-Anne]

The course didn't advice on chemotherapy other than to say the incidences when it was recommended. What it did explain is the normal cell biology, what happens to cause neoplasms (tumours), and the scientific theories of how chemotherapy and targeted treatments work.

It most certainly explained that the problem is molecular, a disturbance of normal messaging from one cell to another, and a subsequent disruption to DNA that causes cells to multiply out of control. There was no suggestion this could be controlled by diet or supplements.

Each lecturer was keen to point out what they don't know about cancer. Advanced ovarian cancer is one that continues to confound known science so in a way and for the time being those of us with incurable ovarian cancer rely on chemotherapy to extend our lives.

Hope this is helpful. xx Annie

[Gina555 in reply to Lily-Anne]

Hi Lily-Anne,

I've had those doubts about chemo too, especially for recurrence, and I found this article helped put things in perspective a bit:

sciencebasedmedicine.org/ch...

(despite the title, it's pro-chemo!)

Gxx

[sharonforce]

Hi Annie

Thank you for sharing this information. I was just thinking about you and the course when I woke up this morning and was going to message you for further details so this was very opportune! It sounds like it was an amazing course i one I would definitely be interested in. I will check out the web link you posted.

Hope you are keeping well.

Sharon

x

[Whippit in reply to sharonforce]

Hi Sharon, You were in my thoughts during the course as I knew you'd have enjoyed it. The halls of residence are adjacent to the seminar room and labs and everything is within a very short walking distance. This means theoretically you can just take a break and a rest whenever you want - but in practice you would have to drag yourself away because it's all so fascinating.

I'm looking forward to meeting the trials nurse to talk about the Ariel 3 trial I'm joining next week. The course has helped me read and piece together information from some of the scholarly articles and presentations on Rucaparib and the hypotheses being investigated in the Ariel 3 trial.

Annie xx

[Gina555]

Hi Annie

The course sounds really interesting, I would love to take part next time. Thanks so much for posting the link! I was wondering, can any cancer patient take part? I had a quick look at the website and it mentions that it is for patient advocates and I'm not sure what that means. Also, do they charge?

Gxx

[Whippit in reply to Gina555]

Hi Gina

The course is designed for patients who do advocacy work - and it's particularly good for patients who are involved in developing and assessing clinical trials because it's so much easier to understand the technical jargon on the research papers and applications for funding.

I think the fees are £500 for the course but most of us were funded by organisations for which we work either in a voluntary or paid capacity.

I know they are keen to promote the course but it's worth considering their aims which are: 'to improve existing treatments for every cancer patient and to develop new treatments by bringing patients’ voices into clinical research.'

Hope this is helpful. If you're interested in getting involved with the development and assessment of research trials you can do this with charities such as Cancer Research UK, Ovarian Cancer Action, The Eve Appeal and Target Ovarian Cancer. These are just a few I know of. I'm sure there are many more.

xxx Annie

[Gina555 in reply to Whippit]

Thanks Annie, I see I have some more googling to do xx

[daisies]

Annie - what a brilliant report from you. You certainly did grasp a lot and more importantly you were able to share the info with us, so that we could grasp what it was about.

Well done - you really are an inspiration to us all.

Love, Daisies

[Whippit in reply to daisies]

Hi Daisies, I'm hoping by sharing that others will hear about it and if the course appeals join it next year. It also encourages women like us to take part in the design and assessment of clinical trials which is important to keep trials relevant and of use to us.

Up till now I haven't needed to understand the scientific details of a trial but from a selfish perspective the course has been enormously helpful in understanding quite what I'm signing up for in the trial I'm joining this week which makes it so much more interesting - and it's made my own expectations more realistic.

Hope all's well with you xxx Annie

[daisies]

HI. My fingers are still crossed to see if the biopsy done fits within the parameters for a possible trial. But as yet, we don't know if my tumours have mutations/or mutated (from what I don't know). I assume that clear cell OC has markers/signs that can differentiate it from other types of OvCa tumours.

I have always been interested in the science bit of the drugs...as it helps me cope with the 'bad' stuff....yuuk. I will be starting a new drug regime next week as I now have an intolerance to carboplatin and that 'surprise' awaits me next week.

Best of luck with the trial next week and wishing you continued good health.

Maureen.

[Whippit in reply to daisies]

Oh that's so disappointing to have an intolerance to carbo-platin. It comes to most of us and it's news I expect to hear because I had single agent carbo platin as my first line so you get a bigger dose. The Marsden ascribe my recent analeptic shocks to that cause. If only I'd known earlier I would have insisted my hospital give me the dual agent.

Are you able to come to the UK mainland for clinical trials? There is a lot of resistance by the health boards in Wales for allowing patients here to travel to England for trials but being a larger place with more centres there are more opportunities there. Perhaps you'd be interested in the course another year. That would explain all about clear cells and their histology. I bet you'd grasp it better than I did. I'm still re-reading my notes to absorb them all.

I hope your new drug regimen goes well next week. What has been suggested?

xx Annie

[lesleysage in reply to Whippit]

Annie,

I am catching up with the last weeks postings as have been away on holiday where there was very flaky to non-existent internet - mixed blessing!

The last of your replies mentioned clear cells and their histology; my OC is clear cell stage 3c but it is not behaving normally and this has, so far, I think been a positive for me. All I have been able to find on the internet is that clear cell is only about 5-6% of ovarian cancers and is one of the most resistant to chemos. Have you any pointers for me, please?

I have volunteered to be a trustee of Ovacome, be part of their Survivors Teaching Students programme and also contribute to the local Huntingdon Cancer Care Network as a way of learning more and giving back a tiny bit if at all possible. This course sounds amazing and I can only hope I'd be around, be eligible and well enough to attend the one in 2016. Can we ask to be put in a waiting list & if so how do I do that?

Enough for now. Oh yes, you very kindly wrote your warm appreciation of my GP's advice of my job is to focus on growing healthy cells and leave the killing to the medics!

Lesley

[Whippit in reply to lesleysage]

I hope you had a really lovely holiday Lesley. It sounds as though you're very busy with all your volunteering. Amazing to become a trustee of Ovacome. It's a great responsibility these days. It's really good to make contact with other people who are doing a lot of volunteering.

I came upon the course because I'm a patient research advocate for Target Ovarian Cancer and I also scrutinise research papers for Ovarian Cancer Action. I think the course was originally intended to support patients who are involved in this sort of activity but this year they appear to have broadened it out.

The charity that runs the course is Independent Cancer Patients Voice: independentcancerpatientsvo...

Their website lists the day courses they run and there's also a contact box to send messages. I think the residential course is run annually. It's worth getting in touch to find out more. It really is an amazing and unique opportunity to find out more about the science of cancer and the latest research thinking.

As it happens the course has been incredibly enlightening for my own situation. I hope to put it to good use as a research advocate and perhaps even on discussion forums though I feel it's better to refer to expert opinion if there are debates on specific issues like clear cell and how this affects patients.

I do hope you'll post up about some of your activities. It all sounds very interesting and positive.

Sending love xx Annie

[lesleysage in reply to Whippit]

Hello again, Annie,

Thank you for all this; really encouraging. I have only very recently started to feel I could muster sufficient inner strength to find my own way to 'go out' towards others living with cancer. Until then, I have 'hunkered down' filling my days with all the things which enliven and interest me whilst waiting for 'it' to return.

I have been on the Voice website and written asking for someone to talk to about the role of the patient Advocate and also to be put on their mailing list for future Study Days.

Warmest wishes for a good day - today, tomorrow and one by one.

Lesley xx

[Liza]

Hi Annie,

So pleased you enjoyed it. I did the first VOICE course and hadn't even done 'O'Level biology back in the dim and distant past! But as you say, everyone was kind and patient and very skilled at expressing things so that we could all follow it. I think that cementing the classroom learning in the laboratory helped.

Eliza

[Whippit in reply to Liza]

Hi Eliza, Amazing to meet someone else who's done the course. Have you made use of it? I do want to maximise the learning. They are an amazing group of people who organise and deliver the course. x Annie

[Liza in reply to Whippit]

Hi Annie,

Yes, I've found it extremely useful. I'm on the steering groups of couple of trials and am on a sub-group for one of the NCRI's Clinical Studies Groups. Eliza