Dealing with Health Information on the Internet

So you (or a friend of family member) come back from the doctor and have a new previously unknown condition to deal with  and you head to Google to lean more.

Health information on the Internet can be overwhelming and if your not careful very misleading. Initial searches bring up shallow commercial, wellness or media driven sites.  Wikipedia is good for definitions and some times has some good references, but don't stop there. The good information is far harder to find. Look for support organisations, government and not for profits, where the information is generally far more balanced and detailed. These sites often have links and you need to keep following the trail.

Get copies of all medical communication and goggle and gain information on the technical terms and prognosis. There is a massive amount of technical medical information and databases such as this PUBMED; At times you wish that you concentrated more when studying science at school, but generally you get the gist. I recently found a best practice guide to treating sarcomas, an incredible and useful document to have.  Medical professionals, if you are ask, are good at explaining the gobbledygook, but time is often limited and you are better to go in to consultation with a least a reasonable understanding of the subject matter.

To get a patient perceptive I have found blogs to be wonderful, but again be careful. People who have a minor condition or potential major condition but get through it quickly don't generally blog about it.  So blogs don't give good balance and are over represented by patients with a poorer than average prognosis. Blogs also have links to useful and interesting sites, such as mine here.

Patient support forums are a great interactive way to get and share information with others with your condition. You learn a lot on coping and wellness from other patients and you learn from their eyes and experience, not the doctors. Also check out YouTube, iTunes University and podcasts, they often have easy to access and digest information. .

As previously blogged the medical industry is a bit dysfunctional, they are great at drugging and cutting but not necessarily good at wellness.  You are referred from specialist to specialist and it is critical that you are informed and take charge of your treatment. If you decide to do your own health research on the Internet I suggest that you do it thoroughly or not at all. Don't charge out too early i.e. "I have a lump what could it be?"  wait to you have a medical diagnosis. Also focus your research on what is know and the current facts of your situation and not on what might happen.

The advent of Health Information to the internet is fantastic. You are able to become fully informed and take a far greater role in your treatment.  It will drive greater accountability and learning into the medical sector and is transforming how we interact with health professionals. Power to the Patient!

NED is coming to Christmas

Generally people get through primary cancer fine, it's when it starts travelling and you start developing metastasis (mets) or secondary cancer in other parts of your body when all the major problems begin. Today I have no mets detected and my cancer is graded stage 3 (out of 4). If I get mets I get upgraded to 4, one upgrade I don't want.. The medical team have indicated that due to the nature of my tumour that there is a good possibility that mets will develop and potentially that these are already in place but they are so small they can't detect them yet. Next week I get my first CT scan (every 3 months) to see if any secondary mets or tumours have developed.

Also following Radiotherapy (RT) and the coming surgery the pathology team start playing a role and from the material excised they will give us a clearer picture of progress. From their work they may find: 

1. no cancer cells detected (last surgery cut it all out)

2. dead cancer cells (RT was very effective)

3. some live cancer cells (RT was less effective)

1 and 2 results are great, 3 not so. With result 3 "where there is smoke there is fire" i.e. although the test is on excised material it is likely that at a cellular level there is still cancer in body and it is resistant to the treatments todate.

So who the hell is NED?
NED is a cancer survivors term for No Evidence of Disease. So my short term goal is for the CT scan to be negative and to get a 1 or 2 score on the pathology report. If so at Christmas, although I will still be hobbling about a bit post surgery, I will be wearing a large NED badge and smile. Although I need to be in the NED zone for a couple of years before my prognosis starts improving, getting into the NED club will be a major milestone.

Kat: My #1 Supporter

Why I spat in a jar and sent it to America

I am participating in a DNA study that has been initiated by 23andMe, a commercial genetics company that provides health and ancestry information based on one's genome. One of the founders of the firm has been diagnosed with sarcoma and is interested in stimulating further research into all types of sarcoma.

If you choose to participate, you will be asked to submit a saliva sample from which your DNA will be extracted. Your DNA will be made available to researchers interested in sarcoma. In return, you will recieve detailed information about what your genome says about your potential health risks, traits, and your ancestry. Its kind of fun, but you may learn things that they may not have wanted to know.

It is an opportunity to contribute to the scientific community's knowledge about this rare disease, and I'm willing to do that in the hope that someday someone will learn enough about sarcoma to develop effective treatments for the hardest to treat forms of the disease.
 
So if you have a sarcoma and want to register go to https://www.23andme.com/sarcoma/

You don't need cancer to enjoy this therapy http://www.samoa.travel/sightseeing/a9/Savai

Next Operation Scheduled

The next operational is scheduled for 21 October 2010 at Burwood hospital, checking in on the 20th. Expected to be in hospital for 7 to 10 days. Burwood is a specialist hospital in Christchurch with a good reputation. My hospital room mates are more likely to be Rugby and Car accident patients than the run of the mill patient in public. I expect post op physio and care will be good. I am doing some MRI imaging work next week and have another surgery planning meeting with Sarcoma specialist in a couple of weeks.

Back is still healing from RT, these things always seem to take longer than you expect. Fatigue is gone and energy levels have returned which is fantastic.

Looking forward to our lying in hammock and floating therapy coming up in Savai'i, Samoa.

T67 Milestone Radiotherapy Complete

I finished radiotherapy yesterday and very happy to be through that. I feel perkier already and it is nice not needing to make that daily trip into hospital. The impact of treatment may increase and hang around for a couple of weeks but I expect to bounce back quicker than that. This would have been a lot harder without the fantastic RT team at Dunedin Oncology, they are the real deal. Professional and very competent, yet warm (hearts not hands) & funny. They are wonderful people providing a great service. Thanks Guys!

Planning to lay pretty low in next couple of weeks but progressively increase exercise and activity. I would like to be pretty fit before operation in October. Dog walk around Portobello with Kat is todays exercise regime.

My grass is growing and it is spring

Thanks to the new lawn supporters... Graham, Calvin, Grant and Zach 

5 weeks of Radiotheraphy and Driving Cars doesn't mix

CRASH... off to a different doctor tomorrow.