Monday, January 25, 2010

The Times, They Are A 'Changin"




I've said it before and I'll say it again

"every cancer patient or their caregiver MUST be pro-active in their own treatment and care"

Don't always leave everything up to the expert opinion of your doctor, whether it be your family doctor or your oncologist.  I'm not insinuating that we know more than they do, but after all, when you think about it, not every physician, oncolost or specialist in any medical field can be expected to know everything there is about any chronic condition.  That statement is especially true for a particular type of cancer, since there are well over two hundred different types of cancer.

Last night I checked into a chat on the internet about kidney cancer.  I was given the heads up about it by another patient - thanks Karen - and it was hosted on http://www.talkshoe.com 

It was the first time I have ever been on this particular site so I just listened into the chat and then due to the midnight hour approaching, I exited.  I will return though and find out more about the website in a couple of days.

Two statements that were made by the moderator that really made an impact on me were:

"never before has there been a better time in history to have kidney cancer"

 AND

"wouldn't you like to be the first person on a clinical trial treatment that cures cancer?"

Just read both of those statements again....they are very profound!  In previous posts I have discussed the many different treatments and technological advances that have been made in kidney cancer since 2006.  It is truly a far different medical world now for cancer patients then is was back then....as I think about when my husband was diagnosed and only given 3 mos to live!  So, as last night's moderator stated, if you have kidney cancer today, you have so many more options available to you.  Basically, if one particular drug is not showing favourable CT results, then you possibly will have at least another treatment option or two to try.  That is of course, if you are willing and if your oncologist knows about the new treatments that are out there.  Not all of the oncologist do know, and this is where it is your responsibility to be PRO-ACTIVE and have all of the information right there, ready to pass along to your oncologist.  Knowledge is definitely power.

The second statement from last night's chat refers to the fact the if you have the option to become a participant in a clinical trial, who knows, the treatment you are taking might just be the one that will open doors for many other cancer patients and possibly might even be the cure!!!  So, realistically, you have to give it a try...that is depending on your present health situation and your emotional condition and the type of treatment that is being offered.  Just don't resign yourself to the fact that if  your doctor tells you there is nothing else out there available to you, you accept it and go home and just give up!!!  Nonsense!!!  You keep looking, you keep trying to connect with others who have the same type of cancer as you do and you keep gathering every little bit of information that you can about your cancer.

One final note:  Back in 2006, I would NEVER have imagined writing down a particular medication for my husband to take to his doctor and ask for a prescription....now however, the tide has turned and that's exactly what we do.   We know what works for different side effects, because I keep current with other caregivers and patients and obtain their expert knowledge?  Who knows better about what works to relieve side effects, than the patients themselves who already are taking the prescribed medicine and are finding the much needed relief.  Of course you ALWAYS need your dr's opinion first and foremost, but you have the information that he/she needs to help them along.

Enough said......be PRO-ACTIVE......I know of patients who are not, and who unfortunately do not know that there are other options available to them.  It is indeed very sad!

Everyday when I read the obituaries in my paper of those who have passed away from cancer, I always wonder if they knew everything there was to know about their type of cancer.

  Please pass this along to anyone you may know who has cancer, so that they can become informed!!!







1 comment:

karen said...

well said as usual Deb! There IS so much new stuff coming down the pipeline for treatments, it's very exciting and gives all of us even more hope. For instance, 3 weeks ago my local cancer centre announced it is fundraising to get the new Cyberknife Technology into our centre by this Spring. This inspired me to reach out to all my family & local friends, asking for donations, sent to me to collect & deliver, so that I can make one large donation from 'my support group'. By doing this, I hope everyone can see what impact each & every one of us can have. I will be delivering my donations early in Feb, and expect to have collected about $1,000 by then. Fabulous support, don't you think! And although you pegged me as a caregiver (and I guess I am, for myself LOL) I really do have lots of caring people around me! and you continue to be right near the top of that list my dear! Hugs.