[CarolineC]

Lani,

Once again I thank you for your information which has helped me immensely during my years of treatment.

A few months after I finished my initial protocol, in early 2011, I persisted with my onc to run TMs. I was already having symptoms (of a sternal met which I didn't know about) after finishing my Herceptin and continuing with Tamoxifen and a few months later my CEA had doubled but still within the range of normal. My onc said he wasn't concerned and I said "if you're not worried, I'm not worried" but I should have asked to run them again in another month. By the fall of 2011 I had been having alot of pain and a bonescan (which my onc wouldn't order but my gp did) and further CT scan revealed a 3cm lesion right through my sternum and my TMs were out of normal range-NOW the oncs were looking at them. I was stunned and angry that I had been saying something was wrong and had been dismissed (this was now the third time I said something was wrong and it was)

I kept track of my TMs after having rads, then restarting Herceptin and starting Letrozole and after chemo and they came down.Now my CEA has been rising again and I wonder (and hope) that it is because of a possible infection.

I know for some people TMs are not effective, but I also wonder if patients are being told by their oncs that everything is "normal" when in fact there may be an upward trend. I have had problems WITHIN the range of normal. This whole experience has changed me into a person I never used to be; I now ask for all test results and question any changes and have become my own advocate and I watch my numbers.

I also have the great debate with my oncs that things need to change for metastatic patients-I think it is just as important as in early stage to find problems early and treat them. My local onc said "what would that do?" and I replied "buy me time" and with all the treatments that are coming out I believe in my heart that metastatic patients should have monitoring and that it DOES make a difference.

Oncologists need to recognize that TMs can be very effective and I think these tests should be protocol. I am from an area that sticks to protocol alot and everything needs to be evidence-based-I have been in awe of Courtenay, Brenda and Sheila's wonderful medical teams because they tried things that were outside of the box.

I hope to see a shift in the way Stage IV patients are treated; we need to feel like we matter. I will be printing out this new information and will ask to have the Her2 test as well, but I'm bracing myself for the great debate again.