There is a saying I heard many years ago when I was first diagnosed with Ovarian Cancer. "The longer you live with cancer, the longer you will live". I don't think at the time I truly understood the significance of this statement. I do now. The research that is going on for this disease is immeasurable. What is done now in one year would have taken 10 years a few decades ago. I found out I had cancer in 2001, and at the time the prognosis for Ovarian Cancer was very bleak. Interestingly, I had known someone who had died from this exact cancer 29 years earlier and the statistics had not changed much for late stage diagnosis. It still is a really bad cancer, and if I had been given the choice I would not have chosen this one. There are so many more 'curable' (I use the term loosely) ones to pick from. There are still no diagnostic tools available that can pick up this cancer in the early stages with any reliability. The ultrasounds, and blood tests are not very effective So it still has a very high mortality rate because most will be diagnosed in late stage and over 55% will die within the first year. Of all the gynecological cancers, over 50% of the deaths this year will be from Ovarian Cancer alone.
So, what's the good news! Well it seems that since my initial diagnoses there has been an amazing amount of research done on various therapies to try and halt the disease or at least improve remission periods. Ten years ago (actually 9.5) there was only really one type of chemo that even remotely had the possibility to give women some type of remission or reprieve from the illness. Surgery was and still is the best for survival rates, but chemo is almost always necessary in addition. Now, there are more drugs available and the research into other forms of therapy to at least make the tumors drug sensitive or less vascular are hopeful.
The reason I am so excited about this has a very personal point. I am off to see a different oncologist this week, in order to cover all my bases. I will probably be able to have surgery again, PLEASE, as that would be the best scenario, but just in case I want to know what my other options are. You see surgery is usually only an option in the initial diagnoses, not in recurrent times. I have been extremely lucky to have been one of the rare cases where I had surgery the second time...third time who knows! So I have been doing my own research so that when I see the Medical Oncologist (as opposed to Surgical) I can have some questions to ask. I believe in being a very active partner in my own journey. Not that I don't trust the doctors, because I do, but because I believe that it is my responsibility to at least have some idea of what is going on with my particular disease. It would be much easier to just defer the responsibility but that has never been my way of doing things, so I am not about to start now. I feel it is important to know what has happened in the world of research in order that I can at least have some idea of what to ask, and it makes me sound intelligent too!!!!!
This journey was never one I wanted to take and as I have said "it is not of my own making" but it is my journey and I don't want to be just an idle passenger on the bus. I like to drive the bus periodically, although I will give over the wheel when it comes to difficult medical procedures....and I do listen........although most people that know me might find that hard to believe. I listen.....I research....I ask questions.....and then WE decide what is best....its a journey of more than one!!!!
3 comments:
I know "Good luck" is inappropriate at this point, but I do hope you get the information that is best for you (and not what is most convenient for the medical profession.) I am praying for you.
You are also educating those of us around you who care and follow your journey. And if that medical oncologist doesn't offer some positive news, then I suggest that we throw him under the bus!
Im with Pat on this
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