Monday, August 31, 2009

Medical Advertising: A Slippery Slope


This morning, I was a little annoyed to see a commercial on TV advocating people to be tested for BRCA.....but it wasn't a hospital, it was a private thing. It was pointing out that you could either rest assured you didn't have the gene mutation for breast cancer if there was history in your family, or you could take steps if you did find that you had the gene abnormalities.

I find it horrible that pharmaceutical companies are directly advertising to patients, and spending a pretty penny on it. High advertising costs, of course, drive up the cost of the drug. I also hate it because doctors should be the ones who evaluate whether or not a drug is appropriate, not the patient...viz Michael Jackson.

I understand that doctors in general may not be able to keep abreast of everything, but on the other hand, very few patients can make heads or tails out of medical findings in medical journals, and sometimes the translations are less than to be desired.

I also didn't like the fact that we don't know all the genes responsible for developing breast cancer. We probably will find more, but if you come up negative for BRCA1 and BRCA2, it doesn't mean you won't get breast cancer. Conversely, there are people out there who have the gene abnormalities who will never develop breast cancer.

Yet, this advertisement made it seem like it was a big bandaid ... GET this test! BE Free from Worry! Well, it just seems to me like this is playing on people's fears.

I am also not convinced that being tested and finding the abnormalities might not impact the children of the carrier. There are no safeguards in place to prevent them from being denied coverage if there is something found....I'm not convinced this is safe yet.

It would seem to me that it would be far better to try to figure out the causes of cancer and better treatments....but hey, I'm just a lonely little survivor who dislikes it when medical companies/drug companies are trying to take advantage of a bad situation.

Wednesday, August 26, 2009

Planing

Tonight, as I was making dinner, I was listening/watching the NBC tribute to Teddy Kennedy. I thought back to riding my bike out to Chappaquidick and wondering how one could forget that this man was on this desolate bit of road with a campaign worker...and...well, you know the story.

However, Teddy seemed to have turned a leaf. He certainly seemed to have been able to do a lot of positive things for someone who would probably best be described as a rogue...

Anyway, what I was thinking as I chopped up yet another zucchini was that the networks had had time to put together things on his life and get interviews with people to show what a complex person he was.

I also thought back to a friend who died of Cancer about 5 years ago. She had only been diagnosed for a short amount of time. She wasn't terribly ill when she was diagnosed, and she was also in her 80s. She put together her own funeral. She spoke with the minister about what she wanted to be said, what rite she wanted (she was Episcopalian), and most importantly to her, what music would be used.

Music was incredibly important to Dottie. She sang alto in the choir with me and still had a good voice despite her age. Her children and grandchildren were also musical. Her service was long, but it was beautiful, and I'm sure she, and everyone who was there, enjoyed it.

Regardless of whether we have cancer or not, we should write down what we want to have done/said at our funerals. That's one gift we can make for the bereaved we leave behind.....the fewer decisions they have to make, the better. Copies of instructions should be left with several people so that they can easily be located.

I know that my daughter knows I want to be dealt with as cheaply as possible and to have a party for all my friends in celebration of my life afterward.

I hope that they know who to contact (my quilting friends) to disperse my collection of fabric, etc. I shudder when I think of that task....

While I suppose some would consider setting out what I want to have done in the way of funerals, burial place, etc. is maudlin, I think it would actually be the best gift in the circumstances that I could give to my loved ones....the ability to know that it was being done the way I would have wanted it with no argument, and for the least amount of decision making necessary for the people I have left behind.

Something to think about. Besides, I can then lie all I want in my obituary. :)

Monday, August 24, 2009

Sometimes I just want to scream!

Sometimes I feel like I want to scream! All knotted up...why? Information comes out and says we should do this and avoid that....then a week later, they say avoid what we had been told to do before and now do what we've been told to avoid.

Eat this! Do that! Well, heck. Life is just too short to do all the things that "They" tell us we "should", "must", etc. and usually, it is too expensive anyway (anyone check out a quart of Mangosteen juice lately? Ever notice it is mostly cherry juice anyway?????).

While there may be truth in bits and parts, I have decided that for me, I will try to do things in moderation (stopping eating sugary things is one thing I think I must do MORE of ) and choose the path which makes the most sense as well as is based on sound science.

Monday, August 3, 2009

To cut, or not to cut.....Prophylactic Mastectomies

Back when I had my mastectomy, I opted not to have the other breast removed as well. I felt that it was healthy, and I just couldn't face any more surgery (read mutilation) than I had to have.

In addition, I figured it didn't make much difference because even if you had a
prophylactic mastectomy, it wasn't a guarantee that it wasn't going to come back.

When I moved to Ohio, my new oncologist asked me about it as he thought it would be a good idea. I responded that it wasn't fool-proof, so what was the point.

Now, I wonder if I should. Of course, I am not BRCA1 or BRCA2 positive, I have yearly mammograms and P.E.T. scans. I think that somehow I felt that leaving the remaining breast was like a "cancer catcher", that is, instead of attacking my brain, lung, bone or liver, it would go after the breast (this is not true, for instance, my recurrence included mets to the bone, but the right breast wasn't affected...just the left, but it was my magical thinking after having been diagnosed the second time).

I guess that reducing a second primary to the opposite breast by as much as 93% would be a good idea, even if the remaining breast tissue on the chest wall or in the nodes was still at risk of developing cancer.

I don't relish another surgery. I suppose, I should think more about this after having my yearly scan and hopefully ruling out any involvement with the pelvis which is still giving me problems.
I'd love to hear anyone's thoughts on this as I'm completely on the fence. Some of my friends have had bi-lateral prophylactic mastectomies...I think at present, I'm just chicken and that's OK.