Routine marker testing and recurrence... worth it?

[AlaskaAngel]

I know the conclusion that was drawn about whether or not catching mets early is based on studies. and I hope my questions about it are not personal.

But even so, the studies can also be based on opinion, depending on how the question is focused.

Again, I have to ask, if you have 2 populations in which treatment makes no difference, (as Barbara wondered too) is it because none of the treatments that are used are of benefit (or are of very little benefit)? If the question is focused only on "does the treatment make any difference if it starts sooner?" then you miss entirely the question "does the treatment itself make any difference?"

I think the topic is very important. We don't have the resources to give everyone who wants or needs extensive and expensive testing and treatment all that we would like to. How can we make the most of what we do have to spread around to make the most difference for the most people?

As I've said before, I tend not to believe that periodic brain MRI's should be routine for Stage I's like me without relevant symptoms. But I don't think that translates to "monitoring with tests to try to detect early mets makes no difference". This discussion started with markers. I believe in periodic regular markers for even those with early stage bc as a way of tracking with less expense than MRI's. Even though for some they don't work, as you can see by some of the comments of others, they are worth doing, for consideration in combination with lab tests like alk-phos, ALT, AST, etc. The HER2 serum test so far is not recommended for early stage, but I think testing with CA 27.29, CA 15-3, and even combining testing with CEA or CA-125 for some does make a real difference if the treatment works.

If treatment actually makes no difference in lengthening life or improving QOL (and even worse, makes QOL poorer), then that is a very, very important piece of information.

If more recent treatment is becoming more successful in a wider group of people, then earlier detection DOES make a real difference.

AlaskaAngel

[tousled1]

Alaska Angel,

You are correct that the HER2 serum test is not approved for early breast cancer. It is however approved for monitoring advanced and Stage IV breast cancer.

[Carolyns]

Why do so many early stage breast cancer treatment studies involve using TMs for follow-up for x number of years?

Carolyn

[dlaxague]

Alaska Angel said:
Again, I have to ask, if you have 2 populations in which treatment makes no difference, (as Barbara wondered too) is it because none of the treatments that are used are of benefit (or are of very little benefit)? If the question is focused only on "does the treatment make any difference if it starts sooner?" then you miss entirely the question "does the treatment itself make any difference?"

Debbie now: Hi AA, nice to be having a discussion again. I'm not sure I'm understanding the question. It seems to me to be two entirely different questions. I've beaten the first one to death and had better not go there again.

The second one, "does the treatment itself make any difference?" is a question only answered with hindsight, right? Usually yes, the treatment makes a difference. Sometimes a huge, near-miraculous difference, sometimes a small one, sometimes (alas) apparently not any difference.

This working/not working has to do with some things that we know (HER2, ERPR, etc) and probably many many things that we do not (yet) know. In general, each successive successful treatment works less well, or at least less long.

In fact, relevant to this thread, it could be argued (and is currently being argued on the bcmets list by those much more knowledgeable than me) that there is benefit to waiting for symptoms of progression even with mets, rather than relying on TM's or scans, to know when to change treatments. This is not true when a treatment is causing significant side effects because it's best to abandon it soonest so as not to cause suffering or inflict damage while providing no benefit. But metastatic disease that does initially respond to treatment can be left unmonitored except for symptom report, just as the guidelines recommend for after primary disease. Why? Because that is the best way to extend each "tool". Some women with mets look at their options as tools in a toolbox. They prefer not to use each tool until they are absolutely forced to do so, because that way the limited supply of tools will last longer. This is not an approach that suits everyone's temperament, but it's one perfectly reasonable approach.

Debbie Laxague

[AlaskaAngel]

I don’t like to think that anyone who is polite would not find this site worthwhile. I especially value the thoughts of those who have spent time and effort to dig into the mysteries of cancer and are willing to take on controversial subjects.

Unfortunately, cancer really bites hard, and most of the time no one is around to explain the pieces or answer the confusing questions that we have at the time when we need to know the answers most. We get banged up trying to find a way to intelligently and civilly work our way through it. In my opinion, those who have mets early on are working with a very different clock than most of the rest of us are. They learn fast that survival is much more dependent on realizing internally that the standard guidelines are only a rough attempt to guide treatment that is known not to work very well for many if not most, especially for mets.

This is why some of the most remarkable survivors are still here with us. I’m talking about the women who didn’t follow the guidelines and instead are finding ways to be part of the development of better treatments. Those kinds of choices are hard to make, and there are neither certainty nor impartial professional mentors to cuddle them through it. They have had to “break” their mind and go against the advice of the “national guidelines”, and still live with the natural doubts they might have about doing that. There is little if any support at all for them. They’ve had to get past that. Whether their choices prove to be right or wrong, whether they live 6 months or 30 years, the guidelines are based on research done years ago and as one mentioned, their clock isn’t going to let them live by the guidelines.

If I were one of them, it would be important to try to tell that story so that others can benefit and find their way through it all with less pain than they did. It isn’t just a matter of them by chance beating the odds.

As anyone who has been on this site over the years can verify, a short fuse for me has been the way that the Lost Regiment of HER2’s were treated while the “experts” stampeded by us to offer Herceptin to every newly diagnosed HER2. THERE WERE NO GUIDELINES FOR US, just DEAD SILENCE by the “experts”. You will find a number of the Lost Regiment here took it upon themselves to push themselves and their oncs to start Herceptin anyway. I too believe in civility and would not want anyone who has participated in the discussion to be uncomfortable, especially not someone who has so much to contribute and has contributed so much in the past.

AlaskaAngel