Another Piece of Bad (And Misunderstood) Advice

Who has heard that green tea is good for people with cancer and for preventing cancer? 'Raises hand'

Yes I have heard that. I don't really like green tea that much but I do drink it occasionally. I know people who purposely drink green tea because it is 'better' for them. So here's the bad news:

"Green tea and green tea extracts are widely consumed by patients with cancer. Yet overall there is no clinical evidence that green tea or its chemical components slow tumor progression in humans — and importantly, there is some evidence that green tea compounds might interfere with anticancer treatment."

There is some early stage (stage I) research that suggest green tea intake helps:

- reduce the risk of leukemia, after 20 years of consumption

- reduce the risk of prostate, liver,and endometrial cancers, if you drink 7 cups a day

- reduce the risk of diarrhea if you take the extract, but can increase the risk of skin rash and nausea 

Green tea has also been found to prevent the benefits of chemo (chemopreventive) for breast cancer patients. 

But wait there is more:

"A meta-analysis conducted by Chinese researchers of published epidemiological studies found insufficient evidence to conclude that there is an association between green tea consumption and esophageal cancer, despite a subgroup analysis suggesting a possible risk reduction for women.

"Green tea consumption does not appear to affect the risk of pancreatic cancer."

So the take home conclusion is:

"The evidence base is immature and equivocal. There is limited epidemiologic and lab-experiment evidence that green tea and green tea compounds are capable at high concentrations of affecting tumor biology. There is not, however, substantive clinical evidence that this potential translates to clinically meaningful cancer prevention or treatment benefits in humans."

What this means is that there is no real good evidence saying green tea is really that much better for you and can mess with your cancer treatment.

As a group of people, I think we have learned to quickly grab on to what we see as 'good news' or something 'good' to eat or drink because some study said so. When we need to realize there is a good reason more research is often needed. 

Peeking Into Research

We have medical and scientific research going on around us all the time. We have the freedom of the press people demanding instant access to the research. There are some who are concerned about it in that opposing factions are demanding this access into research so they can come up with ways to block or slow it.

The Union of Concerned Scientists is even concerned about interference into the "deliberate nature of science research". Scientists learn about something new and have to digest and discuss it and research it further without interference to learn its impact.

"These scientists, the group says, are increasingly being harassed by ideological foes who seek to unearth documents that would derail or sully their work with evidence of bias."

My concerns have long been based in the media who seem to insist on hyping tiny developments in research, particularly cancer research, to be the biggest breakthrough since sliced bread. While I appreciate First Amendment rights for freedom of information and I do not think that anything but the truth should be published. I think we need to learn the whole story when the research is completed before being subjected to media hype.

If a clinical trial was based on FOUR people, as I blogged about last year, it is NOT newsworthy. Or if its a preliminary breakthrough which was not the goal of the study, why are you telling us this? And if you are only looking for a reason to derail someone else's work, why don't you wait until they are done (unless you truly have a scientific reason, not a personal agenda) to tell us about it. Research takes time and is not going to be ready for the evening news, until it is complete.

This holds true for all types of research. Time is a requirement of research. And even with the internet and open access an expectation, we need to allow the research to be completed before airing it. This also is the case for clinical trials and FDA approvals. 

Okay, this is a pet peeve of mine.

Advice for the newly diagnosed

Yesterday I got a message from a friend about a friend of a friend of a friend who was newly diagnosed with breast cancer, that unfortunately seems like it might be stage IV.

Both my friend and my friend's friend had been urging her to go to Dana Farber in Boston immediately for more doctors instead of staying where she is for treatment. They also admitted, while they knew a fair amount about cancer - because they have been there - they did not understand hormone receptors and other issues particular to breast cancer. My response was give her my contact information and I would be happy to help her understand her diagnosis, as much as I can, and where she can go to get more information and support.

Later I started thinking (that dangerous proposition again) about what would be my advice for the newly diagnosed.

1. Find information to help you understand your diagnosis, knowledge is power. Look for information online, in books (yes the old fashioned printed things), and from medical professionals and medical associations. Ask your doctor questions about your diagnosis and ask your doctor for resources for more information to help you understand your not-so-fun ailment.
   There can be too much information to absorb at once. But I think if you start with your disease, the stage its at, and treatment options - big picture only - you can get a better idea of what you are facing. I mean do not get wrapped up in different chemotherapy options at this point. I think if you can get an idea of what you are facing in terms your disease and not get bogged down into the details, you can get a better grasp on your options.
   Later, after you have had a chance to absorb your diagnosis and its implications you can then focus on the aspects of the different treatment options.
2. Find support to help you keep your sanity. You can find support in many places. I suggest asking your doctor's office to start but also ask any friends or family who have been faced with a similar diagnosis or are in the medical profession. They may be able to provide support but also may be able to help you find more information. Support is many things. It can be a support group - whether virtual or in person. It can be a network of friends who provide childcare, meals, and company. It can be someone to hold your hand while going through treatment or at the doctor's getting news.
3. Focus on your sanity. When faced with a not-so-great diagnosis, you can easily go down the emotional roller coaster to hell in a hand basket and back again, over and over. It is okay to say, 'I'm not going to make a decision right now, I need to think about it'. When faced with treatment options, a good answer can be a question - how soon do I need to decide?. 
4. Stand your ground. Often well-intentioned friends and family members tell you what they think you should do - because their hair dresser's dog walker's cousin's next door neighbor had a similar disease twenty years ago and this is what happened to them. Smile and tell them thank you and walk away. Others will tell you which doctor to use, or why you should go to Germany for this new treatment, or other not so helpful information. Finally, there are those who will offer condolences as if they were at your funeral 'well, you have lived a good life' or 'it must be your time'. What are they talking about? You aren't dead.
   Do not let these people near you, walk away from them. They are not helping you. They do not understand your predicament and listening to them will not help you. They will send you down that emotional roller coaster again. Focus on finding new friends who are supportive. 
5. There is no such thing as a new 'normal' so forget about finding it. Those people who tell us about the so called new normal have no idea what they are talking about. All it does is stress us patients out as we try to find it. However you can still be who you are after diagnosis. You may find you are stronger than you thought you were. You will find out who your true friends really are.

I am not a doctor or a medical professional. I am only a professional patient who has been wandering the halls of medical disasters for decades. This is my advice. You may find that your advice to the newly diagnosed is different. 

Genetic Testing's Downside

Finally someone did a study about a lot of genetic tests. And the results were not that good.

Allow me to state that I have never been a fan of genetic tests. I am not someone who is going to go out and have any genetic tests, any more than I am going to get my palm read or see a fortune teller. I have no desire whatsoever to find out what could be in store for me. I have enough going on currently without worrying about the future as well.

The thing about genetic tests is they tell you if you have a gene mutation or variant that could show an  increased or decreased risk for something. Some of the things could be minor, like getting gray hair younger (like my siblings) or a propensity for wrinkles. Some things could be major, like cancer or a heart condition.

Genetic tests tell you what you could have happen. But they do not tell you what the risk is. The only way to know the risk is for test results compared to other test results and their health issues. The data must be shared. But not all labs share their data.

"...  not all gene mutations, or variants, are equal. Some raise risk a lot, others just a little, and some not at all. Most are of unknown significance - a quandary for doctors and patients alike. And most variants are uncommon, making it even tougher to figure out which ones matter and how much.

To solve these mysteries and give patients better information, the U.S. government several years ago helped form and fund ClinVar, a database for researchers around the world to pool gene findings, coded to keep patients' identities confidential. More than 300 labs contribute to it, including universities such as Harvard and Emory and some private companies such as Ambry Genetics and GeneDX."

"...So far, the project has tracked more than 172,000 variants in nearly 23,000 genes, a small portion of the millions known to exist but some of the more common ones that have been identified.

More than 118,000 of these variants have an effect on the risk for a disease - and 11 percent have been analyzed by more than one lab so results can be compared. In 17 percent of those cases, labs interpreted the findings differently, as either raising the risk of a disease, having no effect on it or having an unknown effect.

At least 415 gene variants now have different interpretations that could sway a medical decision, such as whether to have healthy breasts or ovaries removed to lower the risk of cancer, or to get a medical device such as an implanted defibrillator to cut the risk of sudden cardiac death."

The first problem is not all labs interpret the results the same way and then the problem of what to do about them surfaces. Data sharing will help with these problems as more data is shared and compared.

Further proof Dr Google isn't very good

Another story has come to light on how Dr Google isn't the best adviser for medical stuff. It turns out most people use Wikipedia or Web MD for information on drugs. A new story in the New England Journal of Medicine published recently talks about it.

'"Despite debates over its credibility, Wikipedia is reportedly the most frequently consulted online health care resource globally,” the authors write. “Wikipedia pages typically appear among the top few Google search results and are among the references most likely to be checked by internet users.” Wikipedia, along with Google and WebMD, is where more than half of all Americans turn to for health information, according to the report. 

Researchers found that when the FDA issues a drug safety warning, Google searches about that drug increase 82% on average in the following week. Wikipedia pages about the drug see a 175% increase in views on the day of the announcement.'

The cause for concern is that the FDA does not issue drug safety warnings and update Wikipedia - its left to the general public. WebMD is a little better but it is not proactively updated with things like drug safety warnings. If you need that kind of information you need to follow the FDA on Twitter. So the call is to get the FDA to reevaluate their social media presence''.

I'm not sure the problem is with the FDA's social media presence than there is with that fact that so many people go to Wikipedia for medical information. Wikipedia has credibility issues. It is not based on any specific information but on updates from the community. I never use Wikipedia for medical stuff because I do not trust it.

Dr Google insists in on displaying Wikipedia results prominently in so many search results so of course it is used so frequently. I think we need to learn to use more common sense and switch from Wikipedia to WebMD and other more credible sources.

Healthline - online help for medical issues

Healthline is an online resource for many health issues, blah, blah, blah. I discovered them when they discovered my blog a few years ago I think, or maybe I signed up with them before. I have no idea now (thanks to chemobrain, fibro fog, etc). Anyway, they have nominated me for one of their best breast cancer  blogs (vote for me - and Ann at But Doctor I Hate Pink here - she's in first place but we want to make sure she wins. I just want votes for my ego. I have 11. She has 2900).

Then they asked me to link to their best breast cancer videos of 2013 which you can see here. They emailed me this request a month or two ago - but you may call me slow.

All along I have been thinking they only have information on breast cancer. Call me slow. They are called Healthline - that includes the word 'health'. Today I received an email asking me to add their Rheumatoid Arthritis information on my blog.

Then I did a little poking around on their site and they have all kinds of information on RA, fibromyalgia and all my other ailments. I think I need to spend a little more time on their site. I'll also have to rearrange my resources page to include my other ailments. Now thats a project.

Finding cancer information

There is lots of information out there on cancer. Some of it is very good and some of it is a load of crap. Figuring out how to find the good stuff is important. Here are a few tips:

• Use reputable sites. Look for ones which have some credentials behind them. The American Cancer Society is a great place to start at www.cancer.org. Also try the websites for specialized cancer medical centers such as Dana Farber, Mayo Clinic, MD Anderson, Cancer Treatment Centers of America.
• Medical blogs and newsletters. Many of these same sites have newsletters or blogs focused on cancer in addition to more general ones. Dana Farber has just launched a cancer blog. Mayo Clinic has a Living with Cancer blog and newsletter. Johns Hopkins has a specialized monthly newsletter for breast cancer.
• General medical sites such as WebMD can provide solid information on procedures and tests even if they do not have as much detail on your type of cancer.
• Ask the Experts sections can decipher the technical side of the information you find as well. See this section on the Mayo Clinic's site.
• Cancer type specific information can be found at patient associations or non profits. Google 'cancer name' and the word association to find yours. A list of some of them can be found here.
• Your hospital's website. I am treated at Lahey Clinic and they have a lot of information on ailments and procedures/medical misadventures/tests. I usually look up every little medical adventure on their site before I go to have it. There are standards for each procedure or test but there may be different variations on things like - needing a ride home or how long it will take or preparation - that are specific to where you are treated.
• A very good place to ask where to find information online is your doctor. They know where to get the right information.

Once you get to a site, look for their background before you believe anything you may read there:

• Red flags include broken English, misspellings, lack of organization, broken links.
• Look for date of last updates - on the very bottom line of the home page is usually a copyright date. Websites can stay up long after the creators are gone. 
• Look for an About Us or other descriptive page providing background on the posters. If they have no credentials or aren't medical professionals, their cancer information has no credibility.
• Any site claiming to have a cure, treatment, etc that can heal you if you send them money up front is a hoax. If it is a real treatment your doctor would know about it, you wouldn't need to buy it online.

One of the interesting parts of having a blog is the comments I receive. I frequently get comments from weird medical people telling me about their cures or wanting me to help them by publicizing their book or association or telling me how they can help me. I usually just delete them and/or block them. Yesterday a gentleman in Australia commented that he wants to talk to me to tell me about the beneficial side of cancer cells. Hmmm... I checked his credentials and he used to be a chiropractor and now promotes mind/body wellness which is all well and good but what does he know about cancer anyway? Maybe he has studied acupuncture and other alternative therapies but I won't waste my time.

There is lots of information out there but you need to check it out before you read it. If it seems too good to be true, it probably is.

Social networks and medical privacy

So you have a Facebook account, a Twitter account, a blog, and text and email everyone you know. You share things about your life, maybe not all, but probably more than you think. You complain about your life, tell everyone when you have a cold, a customer made you mad, your boss ticked you off, or your husband brought you flowers. You say happy birthday to your friends and commiserate over a job loss or death in the family.

But what if your doctor was on line as much as you and complained about patients or a work situation - which included you - as their patient.

This issue is now coming to the forefront for many people who use the internet both personally and professionally. The technical advice is to 'create separate personal and professional accounts' for everything. Well I have tried that and the lines are blurred. Everything is tied back to specific email addresses and what if you have an account in one place personally but need to use it professionally?

Hospitals are beginning to recognize this as an issue. I see it as a fairly significant issue myself. I expect my medical privacy to be preserved. I would not want my doctor discussing my medical issues on the open internet, nor would I want pictures of me posted by my doctor.

The free for all, no privacy, no rules of the wild west internet are in direct conflict with the guarded privacy found in medicine, banking, stock insider deals, and more areas. It will be interesting to see how this all unfolds in the coming years.

A really cool new government tool

If you are like me with a few billion prescriptions around, you occasionally look at one of them and say 'what is this one?' because its in the wrong place - like on the bedside table all by itself. There is the easy way of start opening prescription bottles and comparing it with the contents. Then sometimes a prescription changes - and you are going on the word of the pharmacy that its the same thing....

Well because of morons like me who cant keep organized and mostly for the millions of people who call poison control centers, the NIH and FDA have decided to work together (yes two government entities have joined forces) and develop an online pill identification database.

I checked it out and my big complaint is that the search only narrowed when I put in the imprint... So if you saw your child put a yellow pill in his mouth, you would have a very wide list to sort through unless you knew which bottle it came out of.

But I think its a darn good start - putting the information in the hands of the consumer.