Why don't we all have cancer?

As a cancer person, do you ever have those 'why me?' conversations with yourself? Well apparently everyone should really be having the conversations with themselves of 'why not me?'

I found this video on twitter, thanks to Matthew Zachary of Stupid Cancer. Its nine minutes of worthwhile watching. The host is a fairly interesting presenter.


So what did you think? Why don't we all have cancer?

Trying to scare or educate us?

I like these little articles found all over the internet: "signs of  [insert disease name here]". I just found one this morning for signs of oral cancer.

Oral cancer is not something that has crossed my mind really. A few years ago I had a pocket appear in the back corner of my mouth and the dentist (stupidly) said to me "Well it doesn't look like cancer but you really should have Dr F look at it to be sure." Note: never say that to someone with cancer.

But these are the signs of it so you should see your dentist regularly:

• A sore on the lips, gums, or inside of your mouth that bleeds easily and doesn't heal
  
• A lump or thickening in the cheek that you can feel with your tongue
• Loss of feeling or numbness in any part of your mouth
• White or red patches on the gums, tongue or inside of mouth
• Difficulty chewing or swallowing food
• Soreness or unexplained pain in your mouth, or feeling that something is caught in your throat with no known cause
• Swelling of the jaw causing dentures to fit poorly
• Change in voice

Now that I have this list, what should I do? Of course there are little lumps and bumps inside my mouth that I can feel with my tongue. I don't have dentures so that one is out.

Now that I have this list I can obsess over it for as long as I can remember it.... That's the biggest problem. We get a list of signs to look out for whatever the ailment is. We read it. We think about it. Then our brains are full and it falls out, or we convince ourselves we have it and rush off to the medical professional insisting that we are going to die!!!!

Scared or educated? I'm not sure.

So what do those test results mean?

A new study shows (because we always need more studies) that women with breast cancer want the genomic tests but then do not understand the results.I am not surprised by this at all. This applies the results of the Oncotype DX, Mammaprint, and Mammostrat tests.

When I was first diagnosed with breast cancer the Oncotype DX test had just been made widely available. Many women who were also hanging out on the online websites for breast cancer support were getting their Oncotype DX test results (of course I was not eligible for the test) and questioning their results.

• Some women would say this is my result and this is what the doctor recommends, do you think I need a second opinion or something to that effect.
• Another group would say these are my results and they are in the middle, what should I do?
• Finally, there would be more women saying, these are my results, did anyone else have these results and what did they do?

It was clear there was a lot of lack of understanding of the test and what it meant. I think the first point is that doctors clearly need to better explain the tests and what their results mean. But we can't blame the doctors for all of this. Women, or any patient who is faced with a new diagnostic or predictive tool like this, need to understand that it is just one more tool in helping to come up with the best treatment plan for them.

Genomic tests are going to be part of the diagnostic and predictive tools available in the future. Education needs to be done for the general public to understand their potential impact and what they mean. To me they represent the next step in understanding the many subsets of different diseases.

Breast cancer is not one disease but hundreds. Every little test like this can help set up the correct treatment plan for each patient and prevent over and under treatment. Greater education needs to be given so that patients better understand that each patient is different and treatment plans are not going to be the same, even if you are treated at the same hospital by the same doctor.

I am skilled

In the past few days I have had the opportunity to share knowledge and decipher the oncology department. It turns out hanging out in the Cancer wing gives you ins on all sorts of special information:

• I know the receptionist - not just because she has been there since I started going there in 2007 but she also used to work out at the gym I go to where her cousin was a trainer. 
• I could explain about the special amenities in the oncology waiting room - the lunch and snack trays that come through earlier in the day.
• I know they do validate parking - its the least they can do for their oncology patients.
• They have the nicest nurses and staff who regularly go the extra mile (I'm  not saying that other nurses and staff don't do this but there seems to be extra concern and caring in oncology - this may be due to the frequency of patient visits).
• I know the best place to park which involves the least walking to get to the far away oncology wing.
• I know all the credible online resources and which ones to avoid. 
• I could spell most of the big words the hematologist shared with us.
• I knew what questions to ask to get to the next steps.

So I guess cancer gave me some skills. I am an educated patient in some respects. And it wasn't about my health.

Why don't we all have cancer?

As a cancer person, do you ever have those 'why me?' conversations with yourself? Well apparently everyone should really be having the conversations with themselves of 'why not me?'

I found this video on twitter, thanks to Matthew Zachary of Stupid Cancer. Its nine minutes of worthwhile watching. The host is a fairly interesting presenter.


So what did you think? Why don't we all have cancer?

So what do those test results mean?

A new study shows (because we always need more studies) that women with breast cancer want the genomic tests but then do not understand the results.I am not surprised by this at all. This applies the results of the Oncotype DX, Mammaprint, and Mammostrat tests.

When I was first diagnosed with breast cancer the Oncotype DX test had just been made widely available. Many women who were also hanging out on the online websites for breast cancer support were getting their Oncotype DX test results (of course I was not eligible for the test) and questioning their results.

• Some women would say this is my result and this is what the doctor recommends, do you think I need a second opinion or something to that effect.
• Another group would say these are my results and they are in the middle, what should I do?
• Finally, there would be more women saying, these are my results, did anyone else have these results and what did they do?

It was clear there was a lot of lack of understanding of the test and what it meant. I think the first point is that doctors clearly need to better explain the tests and what their results mean. But we can't blame the doctors for all of this. Women, or any patient who is faced with a new diagnostic or predictive tool like this, need to understand that it is just one more tool in helping to come up with the best treatment plan for them.

Genomic tests are going to be part of the diagnostic and predictive tools available in the future. Education needs to be done for the general public to understand their potential impact and what they mean. To me they represent the next step in understanding the many subsets of different diseases.

Breast cancer is not one disease but hundreds. Every little test like this can help set up the correct treatment plan for each patient and prevent over and under treatment. Greater education needs to be given so that patients better understand that each patient is different and treatment plans are not going to be the same, even if you are treated at the same hospital by the same doctor.

Standing up to the idiots

Okay I finally have a real resolution for the new year. I feel I can sum it by saying 'standing up to the idiots'. What I mean by this is that I no longer feel the need to politely step aside and keep my mouth shut when idiots try to tell me what to do.

With my health, I get lots of  'advice' on how to 'cure' myself or to rest up so I can participate in an activity. Now I feel the need to stop being polite and to speak up and politely tell them to be quiet. For example, if I have a back procedure, it is not going to cure my back. Its going to relieve some pain for a while. I repeat, it is not a cure. There is no cure for me. I am stuck with my health the way it is.

My goals are to slow progression of my RA, keep my fibromyalgia under control, and hope there is no cancer reappearance. I think I have real expectations for my health.

The idiots don't understand. I don't get to go to a lot of events and do things that involve much standing or walking or much of anything. Their frequent advice on maybe resting up ahead of time doesn't work for me. If I do too much, I pay the price by resting for a few days to recover.

It is time for me to stand up to the idiots. Maybe I would do better if I consider it educating them.

Trying to scare or educate us?

I like these little articles found all over the internet: "signs of  [insert disease name here]". I just found one this morning for signs of oral cancer.

Oral cancer is not something that has crossed my mind really. A few years ago I had a pocket appear in the back corner of my mouth and the dentist (stupidly) said to me "Well it doesn't look like cancer but you really should have Dr F look at it to be sure." Note: never say that to someone with cancer.

But these are the signs of it so you should see your dentist regularly:

• A sore on the lips, gums, or inside of your mouth that bleeds easily and doesn't heal
  
• A lump or thickening in the cheek that you can feel with your tongue
• Loss of feeling or numbness in any part of your mouth
• White or red patches on the gums, tongue or inside of mouth
• Difficulty chewing or swallowing food
• Soreness or unexplained pain in your mouth, or feeling that something is caught in your throat with no known cause
• Swelling of the jaw causing dentures to fit poorly
• Change in voice

Now that I have this list, what should I do? Of course there are little lumps and bumps inside my mouth that I can feel with my tongue. I don't have dentures so that one is out.

Now that I have this list I can obsess over it for as long as I can remember it.... That's the biggest problem. We get a list of signs to look out for whatever the ailment is. We read it. We think about it. Then our brains are full and it falls out, or we convince ourselves we have it and rush off to the medical professional insisting that we are going to die!!!!

Scared or educated? I'm not sure.