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Wading through the WWW

Radioactive34's picture
Radioactive34
Posts: 387
Joined: May 2011

When I was diagnosed with cancer, I asked the doctor for the "cancer's" name. It was not something she disclosed and she was walking out when I asked the question. She told me the name. Telling her I was going to research it, I wrote it down. She said do not believe everything you read out on the web.

I have heard that and variations of that since my diagnosis. I have outright had people tell me not to research, as it would cause more worry than it was worth. I have had people tell me not to immerse myself in the cancer world...too late...I was/am already here.

I ignored them and researched. Yup, I got all the percentages and "Poor Prognosis's" But I also got empowered. I had a decent idea of what the doctors were telling me. I was able to say yay or nay to treatments knowing what were the consequences. I found this forum and learned more.

For all the hours I researched, I missed an opportunity for a trial. The only thing I lacked was time. I needed to enter the trial x number of weeks after chemo.

If you can bear it, research and learn. Take things with a grain of salt. Be your own advocate. I had a great doctor whom I thought was up to speed on all the trials that I might benefit from....but even then I missed this opportunity. Wading through the information is time consuming and yes....can make this feel absolutely impossible, but sometimes you strike gold.

anicca's picture
anicca
Posts: 324
Joined: Dec 2010

"If you can bear it, research and learn. Take things with a grain of salt. Be your own advocate."

I think this is GREAT advice. If you can't bear it right away, then go slowly, but steadily until you can. If you really want the low down on your illness, ask your doctor for a copy of the pathology and cytology reports. I would not have known about that except for an OB/gyn friend. My doctor had no problem providing the reports, and I would have found someone else if the reports had not been forthcoming. My pathology report contained info that was encouraging, but the cytology report was scary. When I worry about the cytology, I remind myself of the pathology.

Kaleena's picture
Kaleena
Posts: 1213
Joined: Nov 2009

You girls are so right. When after my diagnosis, I was reading my records, I literally froze over the words and kept reading it and not understanding but understanding, if you know what I mean.

Now many years later I decided to read it again and I just said "ehh". It's just a lot of medical terminology to say it looks like this it could be this, etc. etc. I was a lot stronger now and could handle it.

With my new doctor, I haven't even gotten any records or reports. He believes in positive energy and I agree. I don't know if this is right or wrong, but I know he would tell me if I wanted him too. And I have never asked for the records or reports.

anicca's picture
anicca
Posts: 324
Joined: Dec 2010

Kaleena - I'm confused. You started with we are "so right", but you ended with the exact opposite; not caring about the medical details. If that feels best to you, then it must be right for you, but I could not proceed without the reports and understanding it all. I've always been that way about everything. Sometimes it drives my husband crazy, because I want to understand things that he thinks are irrelevant (not talking about illness at all here.)

It's great that you are doing so well for so long!

Kaleena's picture
Kaleena
Posts: 1213
Joined: Nov 2009

Anicca:

Oh my. My post does seem confusing. Maybe this explanation may help.

My initial surgery was in 2005 and I was "fixated" on everything. However, when I had a biopsy confirmed recurrence and then subsequent surgery in 2010 to remove a mass near my rectum which ended up to be clear except for one of the lymph nodes which came back with microscopic cells. I decided to be on a wait and see approach with PET scans every 6 months. I do get the reports from the scans, but I have never received records or reports from the 2010 surgery and have not asked for them. (although I am curious). But I do have to say that if it was a different result, I would probably get the report. But for the meantime, I don't need to know.

My best to you. Thanks for the congrats.

Kathy

P.S. Sorry if I am still confusing! lol

anicca's picture
anicca
Posts: 324
Joined: Dec 2010

Kathy - Nope, not confusing now. I get it. Although I did ask for and study my path and cytology reports after my surgery, I was very slow to seek further info on the web. I did it gradually and carefully. I was afraid to squash my hope. My older daughter spent hours researching OVCA online and was in tears over what she read about neuropathy. It made me stronger, because I had to be strong for her, but I'm not sure how I would have taken it had I done that research myself at that time.

Cafewoman53's picture
Cafewoman53
Posts: 738
Joined: Jul 2010

What is right for one person is not good for the next. I love to research everything so even though I did not even understand everything I read it gives me some sense of empowerment to learn about this cancer. But what I already knew from being an information junkie was that very often you have to sift thru a lot of wrong info to get to the correct info. And even then it may or may not apply to your own situation.
Some people do not want to know anything and that is fine too. I figure I save my Dr. a lot of time by getting answers on my own , not that she dosen't answer my questions. This board is also a great resource there isn't very much the women here haven't been thru.
Colleen

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