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Ovarian cancer: discover the world of personalised medicine, where every tumour isn’t treated the same with chemotherapy.

Jun 28, 2019 • 4 comments

Introducing, Intensivist, a member of Carenity Spain who has agreed to tell us about her experience with ovarian cancer and personalised medicine, the so-called "medicine of the future.

Ovarian cancer: discover the world of personalised medicine, where every tumour isn’t treated the same with chemotherapy.

Hello, my story is the same as many others: a problem occurs, a misdiagnosis of something as nothing but eventually reveals itself as ovarian cancer. You have to continue by just going forward, you trust what they tell you, you are lost, so you let yourself go.

The journey consists of crying, nerves and stress. They operate on you and, as they always tell you, everything has gone very well, it's always gone very well... Then the post-operative period: pain, helplessness, suffering... And the journey of oncologists begins: you have to follow the protocol in the hospital and, if the doctors don't listen to you, there is more helplessness and time against you when you haven't even recovered from the operation.

And the journey of oncologists begins: you have to follow the hospital protocol and if the doctors don't listen to you...

You search the internet for information, ask for advice, and then you find out that you shouldn't have had surgery in a place where they're not specialists in that cancer, that the ovary broke and the tumor cells have spread to your stomach. You go to another doctor and he tells you that they should have removed more nodes, they should have biopsied the diaphragm and the peritoneum... and you think: "but what happens in this system, I trusted blindly in my ignorance but now what do I do?”

And then, an angel appears (my amazing specialist) and guides you, and says to you: "look, the first thing you must do is see if the chemotherapy they are going to give you is going to be effective or not", and you find out that there is a test that tells you this. You do it, and you get that it only has an effectiveness of 13%, so you consult your oncologist and he says: "no, no, ignore those tests! Take the chemo and here the protocol is 6 months" and you say: "but isn’t 3 months is just as effective?" and he answers: "yes, it's true, but here the protocol is 6 months". Once again, the fight with the system and “protocol” continues.

However, the doctors don’t listen and they refuse to change their protocols. So you go back to your wonderful specialist and he tells you that there is a center abroad where if you give them your a piece of your tumour they can isolate your mutations and create a vaccine just for you. It is personalised medicine, and you are told  that it is the future brought to the present, and you think: "chemo to which I have a 13% chance of success or the future brought to the present?" and in the end you take a risk.

Chemo that I have a 13% chance of success? Or personalised medicine?

It's been almost 2 years now, and everything is going well, and you keep asking yourself why people can't be informed, why they can't have the right to be treated with medicine of the future.  Why do oncologists keep clinging to their chemotherapies and watching thousands of people die every day. Cancer is a disease with many external and internal influences, but oncology is statistical and oncologists live from it. But we are sick with the will to live, and if we die, we want to do it with dignity, the dignity that many oncologists take away from us by killing the patients with chemotherapy, knowing that the person will not survive the hardship of the therapy. Is it a lack of ethics, or time or of common sense?

We are sick with a desire to live

Chemo is, thank God, coming to an end because of personalised medicine

Hopefully it won’t take fifteen years for people to become informed about these vaccinations which are made specifically for each individual tumour. Every tumour is different, so it doesn’t make sense to treat each one the same way.

I ask God that my vaccine will continue to work, and I hope that we will be able to fight much more effectively against this cursed disease, generated in many cases by ourselves, humans, habits, etc...

Thank you, Intensivist,  for speaking to us and sharing your story! 

What do you think about personalised medicine? Did you hear about it before now? Do you think it seems like a more positive treatment than chemotherapy?

avatar Andrea Barcia

Author: Andrea Barcia, Community Manager Spain

Andrea is a marketing and communication specialist who has worked in the wellness, tourism and health sectors. Now the Community Manager of Carenity Spain, she wants to help patients find answers to their questions or simply get support.

Comments

on 6/28/19

Have you read this testimonial? What did you think? Was personalised medication offered to you? Do you agree with her thoughts on chemotherapy? 

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on 7/2/19

Mary-Joy 'The last six weeks'

 I lost my wife to Ovarian Cancer in May '98. It was 13 months to the day we got married that I buried her. She was meant to go into hospital to have a Pro-lapsed womb taken care of in the previous November but the usual happened it was postponed again, and again?

The GP saw her in the beginning of February '98 and told her 'it's ONLY a stomach upset, ant-acid tablets, one three times a day and come back in a fortnight. I was working on continental trucking then 'tramping around Europe'. As luck would have it I came home 10 days later to find that my wife looked '9 months pregnant'.

Off to the hospital A&E after ringing them to say what had happened after seeing her GP. We went straight in and they took one look and 'whisked' us off to a side theatre where they inserted a 'drain tube' in to her abdomen, particular care was take for me to see how it was inserted and how it was secured in the abdomen wall. I couldn't understand. Why had they shown me in such detail how the tube was fitted?

Within THREE days 7.5 litres of fluid was drained off, containing cancerous cells in it, a new 'bag' was set up and after another FOUR days another 4 litres was drained. She had an operation on the 9th March to remove both Ovaries with Tumours all over them, 60% of the fatty tissue between the bowel and the stomach, that was cancerous and she had a small flat tumour across the kidney, because of where and how it was situated only 95% could be removed.

We saw a Consultant 7 weeks later saying that they could keep her alive for two or three months but to be realistic it was more like two or three weeks. She was told that they could fit a syringe driver to ease the pain or she could have Chemotherapy, but the consultant said that the Chemo was like 'hot needles'  going in and that she was too ill to survive it, but to go back to her private room and think it over and let them know in the morning, April 2nd 1998.

We went to the room and you can imagine what we were going through?? Shall I have the Chemo or shall I take my chances with the Syringe Driver??? Eventually she had a Syringe Driver fitted at 11-30 am on the morning of April 2nd and we went home (she didn't want to die in hospital). The nurse would come in and fit a new syringe when ever it was needed. During the last week of April we had a Macmillan Nurse come in at night for me to have some rest, because nursing her 24/7 was getting to me. In that last six weeks of her life I went to the chemist twice to get prescriptions for her and to give me a short break from nursing her.

At 11-30 am on the 8th of May, we had a visit from a chap from Macmillan, he was a 'patient assessor' for want of a better description. He doubled her anti sickness drug called Nozinan  and her Morphine from 20 to 40 units, which in the general scheme of thing's isn't very much. This was set up and administered at 11-45 am by the nurse, she said that when she finished that afternoon she would pop back in and see how she was.

Around 16-00 hours her breathing became laboured so I lifted her up into my arms and gave her a gentle squeeze and her breathing picked up and she settled down again. Then at 17-20 her breathing became very laboured again, so now I was sat of the bed with her, I picked her up into my arms gave her a very gentle squeeze and she just 'went to sleep'.

The nurse came in just 5 minutes after she had passed away, we cuddled and she said that if I needed anything to ring her at the surgery. By now another nurse had turned up to see where the other nurse was? They decided to 'lay my wife out', that's a horrible term?? Neither of them knew how to take the drain tube out. I jumped up and said' that's easy I'll show you. I found a small screwdriver in the little pot on the fire place and went and undid the little screw which released the line that was making the 'loop' which kept the tube in place. They reckoned that they didn't know how to do it, or was it for me to perform my 'last act' for her?? That's why they showed me in hospital how to do it??

There was NO Personalised medication on offer back then. If you can get the correct treatment for yourself? Jolly well go and get it.....

Didn't mean to go on. Honest.

Richard

on 7/5/19

@Hidden username Thank you for sharing Richard, very kind of you to be so open and share with other members.

on 7/11/19

Such a sad story Richard x 

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