Digesting

One of the big reasons I started my blog in 2007 was to allow time to digest news as I received it through my breast cancer diagnosis and treatment. I also didn't want to have to repeat the same news over and over in replies to both phone calls and emails. This blog allowed me time to digest any news before retelling it here. I needed that time to digest my latest news. To this day I still do.

Any medical news I get now, I digest it and maybe discuss it with my husband before retelling it. I need that time. I don't know how anyone else deals with their medical news but this is what I do.

I can give many examples of this but as some of them I am still digesting so I am not ready to discuss. All I know is medical news needs time to digest.

More News I Don't Need

You know they tell us that evil cancer cells come out of the nasty cancer tumors and send them secretly through your body so that they show up later as unwanted metastases. These little cancer cooties (the professional term) are just nasty and unwanted and really want to kill us all in the end.

Now we have new research (because we always need more research) on how metastases occur. Or more correctly where and when the cancer cooties come from the tumors. Earlier research had thought that cancer cells came from the exterior of the cells and not very early.

"Even in remission, cancer looms. Former cancer patients and their doctors are always on alert for metastatic tumors. Now scientists at The Scripps Research Institute (TSRI) have discovered why some cancers may recur after years in remission.

The findings, published in the journal Cell Reports, show that invasive tumors can begin sending out tumor cells far earlier than previously thought. These escaping cells – which can enter the bloodstream before the primary tumor is detected – may seed secondary tumors that don't show up for years.

Importantly, the scientists demonstrated that the escaping tumor cells reach the bloodstream by entering blood vessels deep within the dense tumor core, upending the long-held belief that metastatic cells come from a tumor's invasive borders."

I did not need to know this. I really did not need to know that these cells can escape long before the primary tumor is detected. 

"These escaping cells – which can enter the bloodstream before the primary tumor is detected – may seed secondary tumors that don't show up for years."

I love that line. Your metastases could be sitting there, hiding, for years before and after your original diagnosis. Then you get to sit there and ponder 'did my chemo kill those cancer cooties? Or am I doomed already?' No, doomed is not a good word. But I can't think of a better one. 

In addition, now oncologists need rethink metastases...

"The research suggests a primary tumor does not have to be highly invasive to seed metastases. In fact, doctors may want to reconsider the time frame for the onset of cancer cell dissemination. While invasive tumors are more likely to manifest intravasation, the two processes – intravasation and invasion – appear to be independent of each other."

So your basic, run of the mill, cancer, could be sending out more cooties all the time. Nice.

I need to stop reading cancer research. I didn't need this.

I Need to Stop Reading Medical News

I usually like to read the latest medical news. Mostly because I have a lot of medical crap going on. I like to see what is going for advancements and research. I mean maybe some day someone will find the cure for me and all my ailments and I can go back to being a healthy person.

But sometimes the news isn't what I want to hear and isn't very good. Like today.

"Fibromyalgia Worsens Function in RA" This is not what I wanted to hear. Also there is a higher prevalence of fibromyalgia in patients with RA. But there are treatment options for patients with both RA and fibromyalgia.

But still, I don't like the part about worsening function. Crap. Maybe I should read the political news instead.

The killer bacteria

There is killer bacteria at your doctor's office, in the hospital scope, in the air, on the ground, and on the nine things in your house dirtier than a toilet seat. All those unvaccinated people are going to spread measles and other diseases. People with compromised immune systems should take extra precautions to avoid these bacteria. Blah, blah, blah.

And how am I supposed to avoid doctor's offices anyway? I am a regular visitor. There has been so much new recently on all these topics. And I couldn't care less.

I am the poster child for immune system issues, bad health, and all that. And I take zero precautions. Other than being normal and avoiding sneezing, coughing people.

Isn't there anything else on the news anyway? Where are we in terms of a cure for cancer, rheumatoid arthritis, and fibromyalgia? And lymphedema if we are on the subject of cures.

The killer bacteria are out there but so are many other ailments that warrant news, research, and cures.

Withheld information

A few times in my life, I have had people say me 'we didn't want to tell you but so-and-so was diagnosed with cancer, we thought it might upset you'. I hate this. It goes back to my request not to treat me any different because of my health. Unless you want to shower me with money.

I am capable of handling news about other people diagnosed with cancer. I live in cancerland where everyone has cancer. Its not a nice thing to hear about someone getting cancer but believe me I can handle it. The only time it would upset me seriously would be if it was me again. And it really pisses me off when information is withheld.

Just a little rant today. Its been on my mind recently.

Separately I just learned yesterday that an old friend from childhood who lived across the street was diagnosed with breast cancer and died 8 weeks later. Her cancer was hidden behind a benign breast condition so it was not diagnosed until too late. This makes me sad that this could happen in this day and age of modern medicine. She was 54.

Ignore all the headlines

I think I spend too much time reading the headlines, especially in the category of health news. If I believed them:

• I will get the flu because it is rampant across the country
• The cure for many things can be found in some obscure arctic bacteria
• Booze is so bad for you, you could poison yourself easily.
• Pain killers are now the street drug of choice.
• Our phones are suffocating us.
• Cancer is due to back luck.
• The cure for some obscure form of cancer will be found shortly.

I am so done with all that. I am going to be healthier this year and am promising myself, I will stop  bouncing through the news headlines. We know Dr. Google doesn't know anything. So we should also assume that Dr Internet knows nothing.

Emotionally, grabbing at headlines can be very stressful. The yo-yo effect of the constant ups and downs are significant. Its sort of like scanxiety at a lesser level. I need to take more control of more levels of my life, as I have blogged about before, and this is just another one.

With bad medical diagnoses, we tend to grab at straws looking for the magic cure. Then we develop the bad habit of following anything we can find - usually ending at disappointment - and keep repeating the process because it offered us a small glimmer of hope however fleeting.

So I am going to stop reading the over-hyped headlines that offer false hope and start looking for real information. I can't live on false hopes and the ensuing roller coaster.

Blah, blah blah, blah, blah

Ooohhh.... more information on breast cancer risk!!! Hot damn baby, this must have the clues I need!!!

Nope. Not there.

Here they are:

Hereditary: not me

"Being obese, smoking, drinking alcohol, using birth control pills, lack of exercise, early menstruation, and certain benign breast diseases, have all been associated with an increased risk for breast cancer"

I'll take the fifth here. But I wasn't fat until after breast cancer. And I have always been known to get exercise and have never been a fan of the pill.

And then there is something about how estrogen metabolizes in your body and there is a new fancy test for this. The 2/16 alpha-hydroxyestrone ratio which can be measured in a urine test. And you can balance your ratio by eating more plants.

Finally:

"Having one or more risk factors for breast cancer doesn't necessarily mean you’ll develop the disease, but being aware of the risk factors may inspire you to take preventive steps. This could have a huge impact on your health."

So, nothing new here. Its just blah, blah blah, blah, blah.

Maybe I'm in a cynical mood this morning.

When Its Not News!

But you think it is. Yesterday I was cruising through the Health section of cnn.com, reading an article here, and another there. At the bottom of each article were links to more articles. I was reading titles, clicking, and reading some more.

I always look at the cancer one, in case they have discovered a cure and I missed it while sleeping or something. The one I saw yesterday was called "Chemotherapy Game-Changer for Stage IV Cancer". Immediately intrigued, I clicked the link and landed here.

Its looks like a lovely article on chemotherapy and stage IV cancer patients. ITS NOT! Its a paid ad or blog post or whatever.

A week or so ago, I was also cruising around the health section of cnn.com and found this article on inflammation which I found barely interesting and biased. It was titled "Chronic Inflammation is the Fuse for Cancer" and it also was an ad. And from the same website, Envita.com, which is the website for a bunch of medical centers.

I felt duped. I found a link on cnn.com and thought I was reading articles, not ads. I did some more poking around and found that it seems there are always more ads linked in among the true articles.

The third article down on the left is titled 'The Secret to Sleeping Throughout the Night". Its basically an ad as well. You will note the source - Simple Skin Care.

I don't think CNN is trying to scam us. I think the stores at the bottom are found by search engines and compiled there - which is why when you go back to the article, chances are the list is different. Its the advertisers who are trying to fool the search engines into thinking they are news and not a load of propaganda.

So the moral of the story is basically 'buyer beware'. Just because you think its news doesn't mean it is.

Looking for new news

I receive several billion regular updates on advances in the treatment of breast cancer, thyroid cancer, rheumatoid arthritis, fibromyalgia and back pain, among other ailments. Every so often something pops up and grabs my attention or even the headlines on new advances that show some real significance.

But they always speak of small studies and that more research is needed. And then we never seem to hear the results of anything only that more research is needed. And nothing seems to ever help me positively. All I have gotten so far is to learn that I need to stay on Femara an extra five years. But no miracle cure.

After six years of this obsession with cancer research, I feel like there is not much new. Maybe its the lack of the significant breakthroughs that impact me positively. Maybe its frustration with my health's continued downhill slide.

There has been so much promising research but we never seem to see the results. A significant part of this I think is do we remember five years ago when they said this looks good because of this but it needs more research. Now the research is done but we can't connect it because its been too long.

There should be away to easily connect all of this so we can see the long term progress.

I am way behind

Yesterday was National Cancer Survivors Day. How did I miss it? I should get to celebrate twice or something. But I wish it didn't have the S word in the title. How about National People Living With Cancer Day?

Also, this weekend was the ASCO conference. I usually read what is announced each day and now have to catch up.

Here are a few details so far:

• Extending Tamoxifen to ten years from five years reduces risk of reccurence by 15%
• Sorafenib Shows Benefit in Radioactive Iodine-Refractory Differentiated Thyroid Cancer
• Surveillance in Breast Cancer Survivors: First Do No Harm - which discusses over testing after treatment ends.
  
• Innovations in Breast Cancer Drug Development: The Neoadjuvant Breast Cancer Workshop 

There is lots more to read about and I'm sure there will be some big announcements. I have gotten through a few of the sessions so far. The two sources to read are:

• First the news summaries listed here: http://chicago2013.asco.org/daily-news/latest?field_cancer_topics_tid=All&field_daily_news_article_categor_tid=All
• Next read the ASCO Daily News which are at the very bottom left of this page: http://chicago2013.asco.org/daily-news

So I will start reading them myself and see what I think about them. I am sure there will be many exciting new topics discussed.

New Breast Cancer Drug but at What Cost

The FDA approved Kadcyla for late stage breast cancer treatment. This is a good thing. Its about time.  And it will save many women's lives.

But I have a real problem with the financials behind it. A month's treatment costs $9800 or $117,600 annually, which apparently is about twice the costs of Herceptin. These costs will mostly be covered by insurance - and we wonder why insurance premiums are going up.

Immunogen, who developed it, expects to receive a $10.5 million pay off plus royalties of 3-5% of the expected world wide sales of $2 billion (with a b). To my tiny math brain, that means they get $60,000,000 (that's 60 million if you are having problems with all the zeros).

It will be marketed by Genentech who I assume will take in the rest of the profit after coming up with snazzy packaging and fancy ads. I have no idea what Genetech's manufacturing and promotional costs will be but I am sure their profits will exceed that of Immunogen.

But that's okay because the insurance companies will probably cover most of it - which is why our medical costs keep increasing so rapidly.

Going back to when I blogged about pricing and how it is determined by marketing people, I am sure the whopping price tag was set by marketers (those evil people) who wanted it to be high end, represent a last chance for women to extend their lives, and if its expensive it must work really, really, really well.

But at least it is finally available for the women who need it who will gladly pay any price to extend their lives. Call me cynical, but maybe I am.

She can talk about it on her own terms

Oh, the scandal! Paula Deen has had diabetes for three years and didn't tell all of us until this week! She should have told us immediately. And now she must change her cooking style and switch to raw veganism so that she will lose weight and control her diabetes and prevent an early death! We should have been told!

Who am I kidding? I completely support her decision not to go public until she was ready. In her own words she said I wanted to bring something to the table when I came forward.” She and her sons have started a foundation called Diabetes in a New Light and is now a spokesperson for Novo Nordisk which manufactures diabetes medications.

What else is she supposed to do? Is she supposed to change the world, create global peace, and find the cure for diabetes? Isn't this enough? I think she is doing a lot of good with the foundation and as a spokesperson.

When anyone gets a 'not so fun' medical diagnosis, they need time to digest it and get a treatment plan going. They also may need to adapt their life style and make additional changes - maybe changing employment or more. The last thing someone with a nasty medical diagnosis should be required to do is to announce it to the world until they are ready. She gets to talk about it on her own terms.

Tell me more!

This morning I was bouncing around the internet looking for worthy blog topics and came across a tiny article which doesn't tell me enough.... (Do you think I come up with this stuff by myself? I always have to search for ideas. Sometimes I find things to write about and then forget about them before I start writing but today I went straight from the article to my blog before my brain loses the content I want to write about and here I am.)

First I found this TINY article that tells me that the FDA has approved a drug to treat bone loss in cancer patients - specifically women who are being treated with an aromatase inhibitor after breast cancer and men with non-metastatic prostate cancer receiving hormone therapy. Obviously I am not in the second group but the first. And I am having bone loss issues. I will talk to my doctor about this one after my next bone scan in the spring. Basically my bone density is down and in addition to being on an AI, I have a strong family history of osteoporosis. I have already talked to my doctor about next steps in bone density if it continues to go down.

But I digress this tiny article didn't not tell me enough and it referred me to the Prolia website which tells me nothing but offers a lot of scary side effects. So I did a little more research with Dr. Google which led me to a little more information on WebMD that tells me it is an injection every six months and has common side effects of low blood calcium, joint pain, and back pain, in case I didn't have enough of those already. But that is always another tiny article. I need to talk to my oncologist to get the real information.

I'm aggravated

Or maybe I am irritated. I'm not sure. It may be a case of reused 'not-so-new' news. Last night I was watching the evening news and there was a 'Medical Minute' on that said that there are issues with taking Aromatase Inhibitors after breast cancer. I didn't catch the whole thing and wanted to go see it again online and I CAN'T FIND IT!

The topic was something about the benefits vs. the toxicity of the AIs and their prevention of a recurrence vs. Tamoxifen. I am all confused. I am on an AI. If its toxic I want to know. If its not helping me I would like to know. I don't go back to my oncologist for a bit and would like to educate myself in the meantime to figure this one out.

The media has the habit of rehashing 'not-so-new' news when they need to so this may not even be something that hasn't been discussed 10,000 times before. But I would like a little confirmation here.

I will be either aggravated or irritated or both in the meantime.

Medical round up

- This is in the category of 'if you can't cure them, confuse them'. One of the locations of the hospital I go to has decided to renumber their floors. They used to be 1, 2, 3. At the main hospital you enter on the 4th floor. Go figure.

- At PT for my knee yesterday, I told the therapist I was trying to figure out the best way to keep working on strengthening my knee with out causing more pain from the bursitis in my hip. She told me that due to the pain caused by repetitive industry, she doesn't think I have bursitis but arthritis and should talk to my doctor about testing for osteo vs. rheumatoid - which runs in my family.

- I'm cranky because I am waiting for my doctor to call me back - she was out on Tuesday and went home sick yesterday. When I called again yesterday, I was told that it would be referred to the doctor on call if my doctor is out again. I am not in a mood to wait.

- The latest news for women with breast cancer has its ups and downs. They are working on implanting lymph nodes to help with lymphedema but its still in the testing stage. However the FDA now says that silicone breast implants should only be expected to last ten years because of rupturing issues, along with that increased risk of lymphoma.

- Don't go to the hospital in July as they are filled with new residents who don't yet have a clue. If you do have to go to the hospital in July, ask a nurse to make sure the resident knows what they are doing.

- They still do not have a cure for cancer but claim they are getting closer.

That's enough for this morning.