Patient experiences

This page contains links to other blogs.

Vederzwaar is a blog written by a young Dutch mother who was first diagnosed with breast cancer at 28. Diana passed away on March 5th, 2015 in The Hague, The Netherlands after living with metastatic breast cancer for five years. I hope her blog will remain, as it is a testament to her great belief in her family and her perseverance against all odds. Rest well Diana.

Below is a message by our good friend Marc from Canada. Marc passed away on Sunday October 19th, 2014 in Alkmaar the Netherlands.

Hello Victor,

I will write in English because it is so much easier for me.
I am so very sorry to hear about Sheila’s breast cancer. My strongest thoughts and best wishes to you both, I know this is a very difficult time and a roller coaster of emotions. I have read part of Sheila’s blog (I only just found out today from Christine). She seems very strong and full of the right attitude. Again, I wish her and you the very best in these difficult times.
I know what you are all going through and how devastating this all is. I had lost your contact information so you may not be aware of this but I was diagnosed with advanced colon cancer myself last year. Things have not gone well for me, which is why I feel such a profound empathy for Sheila. I had major surgery in July last year, apparently complete removal but numerous lymph nodes were involved. This was followed by 6 months of chemo therapy which I finished in January. No picnic but I came through it well. A follow up CT scan showed no evidence of disease. In June of this year I had a further CT scan. Disaster, 2 large tumours in my abdomen and more than 30 deposits in my lungs. Biopsy revealed a poorly differentiated cancer.
Saw my oncologist, he says more chemo, won’t cure you but if it works it may give you 18 months to live. So there it is, incurable cancer.
I have decided not to do the chemo. I feel well at this point, so what is the purpose of palliative treatment. I am also thoroughly disgusted with how mainstream cancer treatment operates. My oncologist is happy enough to follow the protocol, the standard treatment even though the outcome is dismal. He seems to regard my premature death as a perfectly acceptable outcome, “standard” if you like. Not good enough for me, even if it is for him.
I have done a lot of research, and learned a lot about the “onco-pharmacological” industry. It is a disheartening and cynical business, business being the operative word.
So here’s my take on it all: There is no doubt that modern cancer treatment has made progress. But the progress has not been as good as we had hoped. As a result of prevention, screening and early diagnosis, coupled with effective treatments the prognosis has improved. Modern treatments are very good at curing early, localized disease, and chemo certainly has a role in this. In my case, a stage 3c, resection gave me a 50% 5 year survival rate, increasing to something close to 70% if followed by chemo. Anyone would be mad not to take those odds, not to take the chemo. But modern treatment is not so good at treating advanced disease, with distant spread. And modern treatment is not very good at treating recurrence in distant sites.

My oncologist advised folfiri/avastin/erbitux. He said it would give me a life expectancy of 18 months (when he saw my face he said “maybe 24” – so that’s all right then! ) I actually think he is being optimistic. But that is the way it is. Chemo in advanced disease won’t cure you, it may slow things down for a bit, but after a while it stops working, the cancer mutates around the treatment and starts growing again. And then you look for further treatments and so on until you run out of options. And then you look for trials – I hate those trials. Look at the phase 2 or 3 studies: Some fancy new drug, add it to the established cocktail and compare. And sure, the survival increases from 6.2 months to 9.5. And this then is considered a success, FDA approval is obtained, the drug is added to the protocols and someone somewhere makes a shit load of money. And the patient suffers and dies…..

This Victor is not meant to be pessimistic or to bring you and Sheila down. But there are other ways. Given that mainstream medicine has nothing to offer me anymore I have decided on a very different treatment, which is in fact illegal here in North America but I have been able to access this. And no, I am not talking about vitamins, herbs, diet or other forms of quackery, this is a well documented treatment with outcome statistics that are better than modern treatments in advanced disease. I will be starting this treatment in a few days. The statistics for advanced breast cancer are in fact quite encouraging with this treatment. If you are interested I will happily provide you with the details. As you know I am a pretty sane, well informed person and believe this treatment has merit.

For now I think it is quite reasonable to follow your oncologist’s advice and recommendation and judge the response. But if his treatment does not work there are other options, Sheila’s disease need not be terminal! And if anyone tells you that it is, don’t just take their word for it, take control of your life, stand up for yourself, you have nothing to lose!

Take care my friends,

Marc Dufour

Read more about Marc’s experiences: http://marcdu4.wordpress.com/

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