Hi, I have a friend who just over a year ago had a dozen golfball sized mets in her liver and lungs and one suspicious spot in her spine. After a year on weekly herceptin and paclitaxel plus injections for the possible bone met, there was only one half-cm met in her lungs, plus the suspicious spot in her spine. She continues now with hercetin every 3 weeks plus the injection for her bone. Her oncologist is brilliant and thinks it very likely it will all go away, but they agree that it is better to be safe than sorry and to just continue with the treatment as is unless it recurs. She is also not to have any more scans, just to keep an eye out for symptoms.
It can be very hard to live with the not-knowing. Until the other mets disappeared like that. she was sure she did not have long to live. Now she holds the belief that she is fine and will continue to be fine, but also the fact that there is a known spot that while possibly a problem is possibly not.
When I first got my diagnosis (7/1/14) and was preparing for surgery 13/1/14-16/1/14, I had my bonescan and my MRI of my body to check for metastases, I was thrilled to get an all-clear. Soon I discovered that they mean no mets over 1cm. And that is the best they can do with the standard technology. Invasive methods, ie biopsying the area might tell more but this would no doubt be worse than the disease.
Again and again in this cancer journey, we want definitive answers, we want certainty, we want to know we are free from cancer for now and for ever, but medical science has limits. Even if they could tell us that on Monday there were no mets over 2mm, they could not tell us for sure that there were no mets over that size a month later without another scan and another. And scans like PET, MRI, CAT etc have risks of causing more cancer. I do feel for you. I too want to know where I stand. Even if the news is bad. "Maybe" stinks.
Stage 4 probably entitles you to treatments and access to trials etc that Stages 1,2 and 3 cannot have. It might not be a bad thing, so long as you know you are going to get through this and live well, don't let these possible but not definite, and most certainly very small spots be more than they are. But take very good care of yourself because it is really hard stuff to deal with. Not knowing is the most unbearable (until you learn how to bear it your own way)
best wishes
