Things the Oncologist Never Told Me

HearNoEvilWhen I was diagnosed with brain cancer, the number one thing I realized no one ever said was that I had cancer. That floored me when it sunk in. I had seen five doctors, including a GP, a neurologist, a neurosurgeon, and two oncologists (radiation and chemical), and not one of them had actually said “CANCER”. They spoke to me about pathology reports and grades of tumour and next steps, but you know that scene in the movie where the doctor breaks the “C word” to the tearful patient, sitting on the edge of her chair, clutching her loved one’s hand and a ball of Kleenex? Yeah, I never had that. I felt a little cheated.

Then I felt more than a little angry when, without warning, a package arrived one day in the mail from my local Cancer Center with a bunch of “So You’ve Got Cancer” brochures in it, and a whole book of how to talk to your family about your diagnosis, and a schedule of all the support and education group meetings included. All I could think was “What if I wasn’t an educated person working in cancer research, what if I didn’t know what the tumour grading and all the blah blah really meant? Is this how I would find out that I have cancer?” I indulged in a little tantrum, on behalf of the person I was imagining receiving that package and thinking it was perhaps sent to a wrong address.

After paddling about in the sea of watchful waiting “next steps” for about six months, I ran into the second big thing that no one ever told me. There is a lot of excellent research out there about the effect of lifestyle and diet on cancer. Not just sad, desperate stories about the magic soup that someone’s cousin ate to cure their tumour, but real peer reviewed research that shows that dietary choices can have an impact on tumour growth. I felt like I was emerging from a fog of mental incapacitation (I maintain it was brain tumour induced), and my wheels were finally starting to turn again. I will have other posts on the changes I’ve made in my life and diet, but for now, suffice to say that finding the work of Dr. Thomas Seyfried from Boston College led me on a wellness journey that, one year in, I truly believe has been life altering in every sense. What I noticed once I was able to unstick my mental machinery is that none of my doctors had even alluded to the fact that I might want to do some research on cutting sugar out of my diet, for example, much less going so far as to provide actual advice to do so.

I regularly use visualization techniques for relaxation and therapy. Again, this is a topic for another day. But one of the things I visualize before I go for another monitoring MRI is the cover of my book, which will be entitled “The Girl Who Starved Her Brain Tumour to Death”. And maybe someday some doctor will be able to give it to a patient, sitting on the edge of his chair and trying to clutch onto some thread of his unravelling reality, and say “here’s something you might want to investigate”.

16 comments

  1. Hello there,

    I had a very similar experience to you. Despite asking my oncologist if there was anything else I could do in terms of lifestyle or diet changes, he gave no opinion. He told me if it makes me feel good I should do it. Through research on my own I found out about refined sugar and have cut sugar out of my diet. Through peer review I started to take Boswellia serrata. I don’t know yet if these changes made any difference since I am awaiting results of my first MRI after RT. If you have any other advise I would be happy to hear from you. I am thinking to go for a month to India for some Ayurvedic treatments in order to reenergise my body.

    Best wishes from the UK
    Dagmar

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  2. Thank you for your comment, Dagmar. I don’t know why I’m continually surprised at the similarity of experiences like this, all over the world. I think every doctor just perhaps assumed someone else had actually told me that “grade two” meant this was malignant, it was brain cancer. And I suppose no doctor wants to advise something lifestyle related that will give someone false hope. But I have to think that there must be a happy medium, where they could direct you to information that you could evaluate for yourself. I will share other information in future posts on what I’ve done in terms of diet and lifestyle, absolutely. Best, Alix.

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  3. Thanks for sharing this experience. I really wish you lots of luck with your own healing path. I don’t have any serious illnesses, so I can’t relate to what you are going through. However my doctor won’t consider any other treatments or therapies (like nutrition) unless they have been through a clinical trial and peer reviewed – in other words unless they are funded by the drug industry. She stands behind her closed-mindedness by calling it “evidence-based medicine”. It can be really hard to find a health practitioner who practices more than “medicine”. Best wishes.

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  4. […] ‘Grey Madder’ is a new blog from a brain tumour survivor in Manitoba. She describes the blog as “Thinking really big thoughts on health and life with a dash of frivolity.” Earlier this week, there was a post titled. “Things the oncologist never told me.” It’s a must-read, not just for patients, survivors  and families – but also for health care professionals who work with those facing a brain tumour. Check it out at GreyMadder.net. […]

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  5. Thank you for posting this information. I found one of your comments quite interesting as I was diagnosed two years ago with a grade 2 tumor as well. The doctors kept saying no it was not malignant but instead a grade 2 Being in the medical field I know what these types of cells mean but no one would ever say the “c word”. One of the first questions I am asked when someone finds out I have a tumor is if it is malignant or not. I never really know what to say. I tryto explain that grade 3 is anaplastic and spreads more quickly than a grade 2. I find that grade 2 tumors get downplayed. Yes, they are low grade which is a very good case scenario for having a tumour but it is difficult to explain and comprehend with unclear and conflicting information provided amongst doctors and research. For some reason it makes a difference in my head if it cancer or now. What are your
    thoughts?
    Thank you
    Brandy
    PS: I look forward to reading your posts on diet changes

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  6. Great read… What are you thoughts on wireless technology and electro-smog on brain tumors? Have you looked into this yet?

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  7. Yes, I love that. I am doing the same thing with my diet – changed it considerably, and hope that it has a real impact. Great post, I look forward to reading more from you. ~Catherine

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  8. Hello,

    First off, I would like to express how inspiring it is that you have in part taken your health into your own hands. I feel like too many people are taught to rely wholly on the advice they get from their doctors and aren’t encouraged enough take responsibility to do their own research and practice wholesome life habits. I fully agree that looking to MD’s and specialists for simple, clear answers is often tedious. Having kept a good relationship with my own GP, the conclusion that I’ve come to from talking to her is that doctors have a legal and moral obligation to/not to say things and to guide you on the path that they know through their own teachings. This certainly doesn’t excuse the current sorry state of certain medical practices, but it should be a good indication that, in order to get better, feel better, stay better, one cannot rely solely on what our doctors tell us but must also listen to what our doctors do not tell us. I certainly have hope that the world of modern medicine is slowly evolving to incorporate more than what is currently available. I’ve never been seriously ill before and can’t even begin to imagine how physically and emotionally exhausting it is. I can’t help but think that one would only come through something like this way stronger and more enlightened than when they entered. I wish you the best of luck in your healing journey and hope that others can find inspiration in the path which you have chosen.

    Sincerely,

    C

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  9. I was diagnosed with non Hodgkin’s Lymphoma in October and became aware of the work of David Servan Schreiber who was diagnosed with brain cancer but survived 20 yrs I think and wrote a book, Anti-Cancer A New Way Of Life. He also gave up sugar. There are some moving you tube clips which he made describing some of his lifestyle changes which are worth viewing.

    My experience of healthcare professionals was very similar. No mention of “C” word at diagnosis and when I asked my Macmillan nurse if I could consult a dietician I was told that I couldn’t for my problem. It seems healthcare are only interested in drug cures not prevention or lifestyle changes. No drug company is going to fund research into the benefits of different diets as there is no profit to be made. That’s why we need govt funded clinical research. And given the profits made from diabetes drugs drug companies aren’t going to fund research that would demonise sugar.

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  10. Thanks for reading and for the comments. In general, I do in fact appreciate the difficulty facing health care professionals when there is so much information available out there for patients, and they must get inundated by so many questions that they can’t keep up with everything. To my mind, that’s even more motivation to at least point someone to a reliable source, to another professional such as a dietician, etc., however.

    With regard to labels, the “C” word, staging, I am conscious of the fact that my situation is not as bad as it could be (i.e. grade 3), nor as good as it could be (grade 1, benign). That said, these are all just labels and don’t always shed a lot of light on the reality of the situation, I think. There are benign tumours that cause more serious health consequences than I have encountered, for instance. Some of the particular cell types in my tumour can show a faster “conversion” to grade 3 than normal, so that’s why it’s being monitored a little more frequently than some low grade tumours. But the genetic make up of my tumour cells also contains a mutation that makes it more likely to be responsive to chemotherapy, if and when that becomes necessary. So, it’s very difficult, I’ve learned, to generalize at all. Brain tumours are such a broad category of health challenge, and I never thought I was someone to whom the specific label mattered, actually. Until I received those brochures. Then it mattered to me, that I was being categorized in the “so you’ve got cancer category”. Might not be rational, but that was my reaction and experience.

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  11. We live in Manitoba and our you hear daughter was diagnosed with two brain tumours last feb/13. We are trying to modify her diet as muh as we can, and like you I felt I had no guidance post treatment also. I find its our own research that seems to be helping.

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  12. Larry Menard · · Reply

    In 2004 was told that I had a brain tumour, but never once did I feel that I was being given a complete and understandable explanation. I quickly realized that I had to be my own advocate, challenging the medical professionals’ opinions or scientific descriptons and then there were the duisagreements between specialists about the best course of treatment. Had I not undertaken my own extensive research and pushed for additonal opnions, I amt not sure that I would have had the same outcome.

    Larry
    Ottawa

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  13. J. E. Graham · · Reply

    When my brother was 47 yrs.old, he was diagnosed with a glioma, an astrocytoma, grade 2 . Unfortunately, when the docs tried to do a biopsy, they gave him a stroke. He awoke able to speak, but did not know what the words meant, & many of them were garbled. Five weeks after surgery, he was on tour with a famous musician, singing & playing his guitar. He remembered all the notes & words, but speaking sentences off the cuff was very difficult for him, & for others to understand. He recognized people, but could not remember their names. He underwent radiation treatments daily for (I think) 3 weeks & went for speech therapy for many months. Eventually, he was back to his old self again…almost. Three yrs. ago , there was new tumour growth, & he had 3 months of oral chemo. Today, he got the news that he had only 4-5 months left. It has been 20 years since he was diagnosed with a brain tumour. We are all very thankful to have had these years with him, but it is still very hard to hear and accept an end date.

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  14. Anonymous · · Reply

    I have been diagnosed december 2012 with an astrocytoma Gr II.
    My neurosurgeon didn’t tell me it was cancer at all and when I vistited my doctor he told me that this wasn’t so bad since it is NO cancer…. *sigh*.
    At least I have a brother who is working for a farmaceutical company which is performing research into different cancers and he sent me some studies.
    After reading several articles and books I can conclude that an astrocytoma is malignant and definitly can be catogorized under ‘cancer’.
    This makes me really mad to realise that patients themselves have to figure out what they have!

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    1. Thank you for sharing, this makes me angry on your behalf! I know that these are just words, labels, but I do not believe it does patients any service at all in processing what’s happening and accessing support to simply use different, more confusing and jargon laden labels!

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  15. I think it is essential for us to remember that we are all humans – each of us facing life’s challenges and stressors. And we are all striving to do the best we can under our own particular circumstances, facing our own obstacles. I also think that because we – as patients – are trying so hard to do the best we can under our own circumstances, we are that much more aware of and sensitized to the behaviour and actions of those around us. That being the case, then surely it would not be unreasonable to expect all those around us to not just strive for the peak but actually achieve it?

    Perhaps some scaling back on our expectation of perfection and speed might help us become a little healthier? Let’s not forget to take time to breathe deeply a few times each day, take delight in the beauty of nature, and be kind to one another.
    I think I read somewhere that this kind of practice may have the potential to help keep cancer and some other serious illnesses at bay?

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