Wait for symptoms before scanning & treating?

jessica · 11-21-2005, 01:05 PM

Hi All~
I'm so curious about your response to this thread (started 11/19 by Rhonda H titled "Musa Mayer....") & haven't heard back from any Stage IV'ers. I cut&pasted a bit of it & started this NEW thread. Hope you don't mind.

The following is a select portion from an interview w/Musa Mayer(a Stage II BC survivor & advocate)on Web MD.
What are your thoughts on the following comments?

"… early detection of metastatic disease through testing before you have symptoms doesn't offer an advantage for you. This means that you don't have to drive yourself crazy with repeated tests every time you see your oncologist. It means that your body will let you know if there is a problem..."

"There is very good research that shows that patients who have follow-up testing done, by which I mean bone scans, CT scans, MRI's, tumor markers, etc., in the ABSENCE of symptoms do not do any better or live longer than patients who do not have any of these follow-up tests done.
So what I am saying is that in terms of making sure you don't have a recurrence, it is not dangerous or harmful to wait until you have a symptom. You don't need to be tested periodically to make sure that you are cancer free.
Catching a metastatic recurrence before you have symptoms, versus catching it a month or two or three months later when it's causing symptoms, makes no difference in the course of the disease or in survival. When I found this out and read the research that demonstrated this shocking fact, I was stunned.”

To read the entire transcript from this interview Rhonda's set up the link on the original thread from 11/19.

Keep the Faith!

StephN · 11-21-2005, 01:54 PM

Jessica -
I meant to answer this one, but have been short on time lately. Thanks.

It is my impression that Musa is making a general statement that covers ALL breast cancer patients and not addressing any particular group such as our HER2 positive, high grade and, in many cases, hormone negative subclass.

For those women with low grade tumors that do not present as much of a threat of mets, this is probably perfectly reasonable. But, my med onc placed me in his "high risk" group and kept me close on his radar screen, which turned out to be a GOOD thing as I had mets very soon after adjuvent treatment. I did not have to ask for scans, chest x-ray, breast MRI OR blood tests/tumor markers. My oncologist thought I should have them!

Perhaps you are not in agreement with Musa's message, because it does not come with the caveats for those patients who are at higher risk and who ARE harder to treat once mets occur. AND symptoms can come LATE in the mets process - as we all know - cancer is SNEAKY!

Lisa · 11-21-2005, 02:00 PM

It's not black and white. To look for mets after initial cancers, how frequently would you look, and where? Especially with no symptoms. One could have a clear scan this month and mets might appear next month.

On the other hand, if you are HER2+++ and have had initial bc, some mets don't have symptoms. The one that comes to mind is brain mets. Many of us on this site have requested brain MRIs with no symptoms. Since about 1/3 of us (and growing) will eventually have brain mets, don't wait for symptoms. Talk with your onc and let him/her know you're concerned about scans and see what she says. If you don't like the answer, second opinion.

Love and light,

Lisa

jener8er · 11-21-2005, 02:14 PM

Hi Jessica, my Doc just told me the exact same thing - it won't make any difference if we find mets now with no symptoms, or in a month or 2 after symptoms show up. I just got a final follow-up PET scan (that was clear) so I'm set for a while, but I wish I was getting more scans. I asked my previous Doc for a brain MRI after hearing about it here, and she said no, not without symptoms. Now the trick is not thinking that every little ache and pain is Mets. I guess that gets easier as time goes on.
Jen

Barbara H. · 11-21-2005, 02:59 PM

I just heard from my oncologist last night that my new brain met is a little over one centimeter. I have no symptoms, have taught all day, and am going to Yoga tonight. I feel better than I have in 10 years. So go figure!!! I've been exercising since the summer and have lost 15 pounds. I hate to think of going on that decadron again. It makes it impossible to keep the weight off. I'll see the surgeon on Friday and let everyone know what the treatment plan is. Thanks to everyone who responded to my post when I was at a pretty low point.
Best wishes,
Barbara H.

Kim in CA · 11-21-2005, 05:10 PM

Jessica,

I have pretty strong feelings on this because of my experience with my liver mets. Back in June of 2001 (a little over 4 years from original diagnosis) during my 6month check up they found my tumor markers were out of normal range. Please keep in mind I was very unimformed back then! Anyway, the doc said to come back in a month and we would repeat the markers. So in July we did them again, and after a week or so of not hearing back from them, I figured no news is good news. Wrong!!!! My friend who had some experience with cancer, said to call and find out what the numbers were. When I talked to one of the nurses, she said they would have called if anything were out of normal. Anyway a few days later I did get a call and the Doctor said that we needed to do a scan. So we scheduled a CT. The results came back inconclusive because they thought it was possibly scar tissue on my liver from a problem I had back when I had my stem cell transplant in 97. So next he ordered an ultrasound. I new something was very wrong by the look on the ultrasound tech's face and the way she was acting. Next I had a PET scan and by that time, it showed that my liver was riddled with cancer. So I went from having a small spot on my liver in July, when I had the CT scan and my tumor markers were at 77, to having the cancer throughout my liver with tumor markers over 1000 by the end of September. I now know that when it is urgent Scans can be scheduled right away in days, not weeks. So in just 3 months it had grown like crazy, and I never had any symptoms except for my pants getting a little tight around the middle toward the last couple of weeks before I had confirmation.

I really feel that if I knew then what I know now and had stayed on top of things and demanded to have the scans much quicker, I would be better off today. The reason I say this is because I had to be on the Taxotere and Herceptin for 8+ months. That combo worked very well for me but it really kicked my butt toward the end, in fact I had to stop before I got to NED. I feel that if I had started the treatment two months earlier I wouldn't have had to stay on it so long and wouldn't have done so much damage to my bone marrow. I still have a very hard time keeping my blood counts up, and I haven't been on chemo for over two years. Remember, I also had the stem cell transplant which really limits the amount of chemo a person can do in their lifetime.

So for me it is important to jump on mets when they are small because I feel like I won't have to do as much chemo to get them back under control.

By the way, now when my markers start to go up even a little my Doc gets nervous too!

Kim in CA

Patty H · 11-21-2005, 05:35 PM

I don't like that waiting thing either. We found my lung mets because I had a cough after finishing radiation. Though the cough had nothing to do with the mets. Since my Dr. is working on containment and quality of life, I feel like I want it caught soon for containment. After I finish radiation this time, my Dr. said we would scan every couple of months and at the first sign of more growth we will deal with it. Patty H

AlaskaAngel · 11-21-2005, 05:41 PM

I feel the same way Kim does. I had no symptoms at original diagnosis at all. The "surgeon" I originally had did not biopsy me for months even though the test I had, an ultrasound, was rated BI-RADS 4. I still think the surgeon was going strictly by whether or not there are symptoms or a palpable lump, since it took FIVE ultrasounds and THREE radiologists to convince her.

My tumor grew from 1.0 cm to 1.6 cm in about 2 1/2 months in-between ultrasounds, and meant chemo for me. So I too lean toward more frequent testing and exams and markers.

I too interpret the information to mean the numbers apply mostly to the broad group of breast cancer patients -- and not as much to the much more limited group of those who are strongly HER2 positive. HER2's just haven't been tracked long enough or thoroughly enough yet.

A.A.