A Carcinogen in My Coffee

I feel like this is another step in the plan for Big Brother to take over our lives and regulate us to death. Seriously. Or maybe its just another way for the lawyers to get rich over stupid lawsuits.

There is a lawsuit making its way through the Los Angeles court system that wants companies who make or sell coffee to warn consumers that there is a potential carcinogen created in coffee brewing that could cause cancer. As part of Proposition 65 in 1986, California businesses need to warn customers that there could be a risk involved in consumption or use of a product. So the lawsuit claims that customers need to be warned about coffee consumption. When I first read this article, I asked 'what are they thinking?'

First of all, there are plenty of other things in this world that could cause us cancer - lets start with sunshine, drinking water, inhaling air, eating, and more.

Second, we do not need more regulation that would increase the cost of doing business.

Third, there is no proof that the chemical, Acrylamide, involved is even a carcinogen.

So as someone who has wondered, from time to time second to second, as to why I have been so lucky to get cancer twice, I really do not to waste my time trying to figure out if I drank a 'bad' cup of coffee at some point. I have plenty of other things to worry about - like where is my cell phone or what is that new pain in my back. I don't even live in California and it really just irritates me that money is being wasted on this.

Obviously the lawsuit was filed by someone who is not like me and doesn't have any dependence on their morning cup of joe.

I would seriously like to take the money wasted in this lawsuit and especially the legal fees, be put into something useful, like a cure for cancer.

Giving Back

Or helping yourself while you help others. After going through cancer, or other nasty medical misadventure, you are traumatized, and, as in the words of Arlo Guthrie:

"...you get injected, inspected, detected, infected, ..."

You do not have fun for many months as you watch your hair fall out, your blood counts go up and down. You also follow your tumor markers more than the stock market, try to figure out how to get rid of your 'chemo pallor', and lighten up any surgical scars. At the end you feel like you have been dragged through a swamp, up a mountain, and under the proverbial bus. 

You spend a lot of time trying to find the rumored "new normal" and crawl around dealing with PTSD. At the end, you are you again but not the same. There is a lot of coping involved and it doesn't end overnight.

Since my second cancer diagnosis I have spent more time trying to cope than I have ever done anything else in my life. One thing that has been very helpful for me, because of all the cancer crap I have had to deal with in my life, has been to give back and help other people who are coping with cancer - or just plain 'giving back'. 

In the past three weeks or so I have been connected with three people who are coping with cancer. They are completely disconnected from each other. But I am trying to help them cope. 

How can I help them? I am not a doctor. I am not a medical person at all and do not claim to have any medical or psych/social training. But I do have experiences to share. Most medical personnel have not been through cancer so they cant talk about it from my side of the street.

I can talk to them and help (I hope) them cope with what they are going through. I can help them find resources to give them more information (instead of listening to Dr Google or reading wikipedia). I am also living proof that someone can live through cancer twice. 

What does all that give me? It gives me the opportunity to stay connected with the cancer community. I can never ignore the fact I had cancer twice and those thoughts never leave my head. By helping others, I get a sense of satisfaction that I am doing something good, something that helps someone else. 

In addition, I am not trying to hide my real feelings about cancer by burying it some place where I don't talk about. I can't hide my cancer feelings so it does me a world of good to use them to help other people.

So if you have cancer, go find help if you need it, or if you can, go help someone else who would benefit. Do some good by giving back.

End Of Life Stuff

No I am not dying. But in the middle of the night I couldn't sleep and my mind wandered off to the best and funniest obituaries that you see shared around the internet. (I have no idea why my mind wandered that direction.) But I was snickering about some of the funniest ones I remember parts of.

But it made me think. I want to write my own obituary. And it will have to be a funny one. Because I want people to laugh about me or at me after I'm gone. And not mourn me sadly. But that should be in a couple of decades (I hope).

So here are some thoughts on what I will include:

• She was so uncoordinated she could walk into a wall if she wasn't looking.
• She spent many years abusing her body through ice skating, skiing, hiking, walking, and more to get her body into the sad shape it was later in her life.
• Though she went through cancer twice, she made an effort to enjoy everything she did
• Her overwhelming addiction to bacon was prevalent.... But she enjoyed cooking and would never follow a recipe.
• A early in life bookworm she managed to kill many houseplants but did love gardening
• She leaves behind her ever 'eye rolling' husband of X years, who put up with her cat fixation and tolerated her cooking.

I could go on with this list but it still needs finesse. I will keep working on it.

My grandmother, for the last 15-20 years of her life, had an 'In Case of Death' envelope. Whenever anything was remembered that would be useful after she was gone was scribbled on a piece of paper and filed in the same 9" x 12" envelope. After she died, we found many duplicates, some mysteries that may never be unraveled, and lots of last wishes. 

Maybe its my age, maybe its my 'oh so fun' medical history that prodded my mind in that direction, but I might need to get organized a bit more in this area.

I Need A Nap - Or Reasons I Don't Blog

I haven't been blogging (as I promised) because I have been too exhausted. I meant to blog today, yesterday, the day before, and probably the day before that. But when I finally have a chance to sit down and gather my thoughts to blog, I am exhausted and just can't formulate words.

I do need to blog as it helps me destress. But I haven't been able. Maybe I just need a tropical vacation....

New Breast Cancer Research Found A Factor that Doubles Death Risk

Isn't that a warm fuzzy feeling? Now I want to ask my oncologist if I have this factor. But first let me see if I can explain it. This is the precis:

"Researchers at Karolinska Institutet in Sweden have discovered that the risk of death from breast cancer is twice as high for patients with high heterogeneity of the estrogen receptor within the same tumour as compared to patients with low heterogeneity. The study, which is published in The Journal of the National Cancer Institute, also shows that the higher risk of death over a span of 25 years is independent of other known tumour markers and also holds true for Luminal A breast cancer, a subtype with a generally good prognosis."

Apparently Luminal A breast cancer is a subtype of hormone receptor positive that usually is a good thing. But if your hormone receptor status changes when you develop a metastases or even with in your first tumor (which sometimes happens). 

"Why this is the case, however, is not known, but a possible explanation is that there are tumour cells in one and the same tumour with varying degrees of expression of the estrogen receptor. This is known as intra-tumour heterogeneity."

But some recent research found that patients with high heterogeneity and Luminal A breast cancer, regardless of previous treatment, were found to have double the death risk. 

"Our study shows that patients with high intra-tumour heterogeneity of the estrogen receptor were twice as likely to die up to 25-years after their diagnoses as compared to patients with low heterogeneity," says Linda Lindström, researcher at the Department of Biosciences and Nutrition, Karolinska Institutet. "And this was independent of whether or not they'd received tamoxifen and of other known tumour markers."

The researchers also discovered that the greater risk of death for patients with high intra-tumour heterogeneity also applied to patients with Luminal A breast cancer, a subtype of estrogen-receptor-positive breast cancer that is considered to have a good prognosis."

So what does this all  mean to the average bear breast cancer patient? Me, I'm going to add this to the growing list of things to ask my oncologist. I don't know if I was ever tested to find out about heterogeneity or Luminal A and if I can be now. But I want to find out.

This is a classic case of new research on cancer finding more differences in the different types of cancer. As we have learned, cancer is not one disease but hundreds, or thousands of different diseases. Scientists are slowly unraveling them one step at a time. Sometimes panicking us patients, and sometimes making us feel a little bit better. But the process is way longer than I want.

Early Detection

We do regularly try to detect some cancers early through mammograms, colonoscopies, and PSA tests. I think most of us (meaning the general public) are comfortable with these tests as we age. But what if there was a genetic test available which you could have done regularly, every few years or whatever time frame, to test you for several different cancers before they had a chance to spread.

A new test, CancerSEEK, has been tested on more than 1000 patients and seems very hopeful.

"The CancerSEEK test looks for mutations in 16 genes that regularly arise in cancer and eight proteins that are often released.

It was trialled on 1,005 patients with cancers in the ovary, liver, stomach, pancreas, oesophagus, colon, lung or breast that had not yet spread to other tissues.

Overall, the test found 70% of the cancers."

But do we want it? I'm not sure. Yes it would be nice to be able to get to cancer sooner but is it worth the stress and costs? By costs, I do not mean financial (because the earlier a cancer is detected the less it costs to treat) but emotional on the patients.

I know women, who have never had breast cancer, who get very stressed by their annual mammogram and hold their breath until they get the all clear (which is sometimes in the form of a letter sent weeks later). This can be a very bad time for them.

With my medical history, do I really want another pile of stress on me? I'm not sure. Yes cancer sucks but sometimes we just don't want to know what is lying in wait for us. I am very much up in the air on this.

I think this is in the category of 'just because we can, doesn't mean we should'. Medical professionals may think this is the holy grail of cancer detection, but I kind of find it like being micromanaged on my health.

I Am Very Confused

I realize this must be part of the vast conspiracy to keep breast cancer patients confused. Nancy, over at Nancy's Point, blogged about the AJCC’s Updates to the Breast Cancer Staging System, asking if we are confused about it. Well, since I didn't know about the updates (or even who the AJCC is) I was and still am very confused.

Let's start with the AJCC or the American Joint Committee on Cancer. Apparently they are the people who set up cancer staging criteria. They set the original TNM staging system in 1959. TNM means Tumor size, Nodes positive, and Metastases. 

"The panel recognized the need to incorporate biologic factors, such as tumor grade, proliferation rate, estrogen and progesterone receptor expression, human epidermal growth factor 2 (HER2) expression, and gene expression prognostic panels into the staging system. AJCC levels of evidence and guidelines for all tumor types were followed as much as possible. The panel felt that, to maintain worldwide value, the tumor staging system should remain based on TNM anatomic factors. However, the recognition of the prognostic influence of grade, hormone receptor expression, and HER2 amplification mandated their inclusion into the staging system."

I used to know what stage I am - IIA. Now I can't figure it out. With all this other stuff included. I am very confused. I looked at the American Cancer Society's website for help. And I am even more confused. There is no more little chart that shows what you stage you are. 

So here is my game plan: I will ignore all this new information until I meet with my oncologist sometime next summer and ask her. I feel this is better for more. A little ignorance and confusion will go a long way in reducing my stress. 

Now all of us breast cancer people can have these little conversations:

'What stage are you?'

'IIa, I think.'

'Is that the old staging or the new staging?'

'What new staging?'

'You didn't hear about it?'

'No.' 

All the breast cancer staging changed in 2018. They added all sorts of new information, grade, hormone status, etc'

'Oh, so if I was stage IIb, do you know what new stage I am?'

'No, I don't even know what stage I am. I can't figure  it out. I'm going to ask my oncologist.'

'Crap, let me call my oncologist too.'

But I swear there is a vast conspiracy out there to keep us all confused.