Decide in a more human way

Thanks with my heart for the gift of this post. So many things to say...you know me Elaine, it is Rosario, my spy name is charolaola :) I haven't even finished listening to the podcast but I stopped it to write this as I had the urge to do it. Two and a half years into the system after a metastatic diagnosis and I am just starting to understand what is going on with my body, with the system, with my life and with that of my closest ones. Of course I asked many questions in this regard and many more to the doctors at the beginning but no one was able to answer to me with certainty or with any kind of clarity. What i got was, well it is "difficult to say" "we don"t know" "we will see how it goes" "every case is different" "protocol says this or that". Most of it, I do not remember having had the TIME to think and weight my options. It is as if there was a "rule of no engagement" with the specialists and the team around them. True, each personal path is a different story, treatments will react differently in every woman, every woman will react in a very unique way to each step of the process.

This is my second experience in a medical system and in both situations (different countries) we do not get the whole picture, as Elaine says. Why is that I wonder? I could give it a shot with a few answers but this is not the point. I just want to echo what she says that we must not get into the frenzy of it and have surgeries and radiations and all of that right away...In retrospect and knowing what I know now, I think that women need to be given the option to WAIT and get informed, they need to be directed to support groups where they will be able to see the different scenarios, they need to be given the time to digest it all. Being given THE CHANCE to WAIT should be part of the process. Yes, perhaps 6 months makes a difference as it may become a life or death situation. But that too should be given as an option, without making us feel afraid or guilty. Are there legal implications for them if we wait, if we take the time to decide in a more human way?

All of this said, I love my doctor, the pivot nurse, the psycotherapy support, MRI and CT scan staff, nuclear medicine staff, the treatment room nurses, all of it, they all have been nice. They all have done their job wonderfully on each appointment and the follow ups over the phone. I only hope that if they ever get to see these exchanges, this may give them a bit of more perspective of the needs we have in that situation beyond getting us treated medically right away. Of course, at the moment of diagnosis it feels that either we have to make up for the "lost time" (who knows how long cancer has been there) or that we have to "move fast" to get the cancer under control or to fight it back. We feel afraid and we trust the specialists, ok. As such, my suggestion thus is that the specialists themselves refer you to other similar cases so that you can exchange and then make your own opinion about the situation and then finally take the decision of how to proceed. Some women may not need this but again, for those who do, the option should be available in an already structured way. I, myself, would have liked to do this prior to the treatments but I did not know where to go.

The day of my diagnosis I was alone in the doctors office (at the beginning of the COVID restrictions), it was the resident who broke the news to me. They explained to me what the next steps were, I wanted to talk to other women but I did not know where to go. I do not remember if I asked him about this to be fair, but when I left his office on June 2020, I left with an appointment in two weeks for starting radiations. He was great, he picked up the phone and got me an appointment for a CTSCAN right away. Yes, it was fast, the system took me in right away, I can not complain, thank you. But I went in there "blind" with only a big amount of readings behind me but no personal experiences of anyone that could help me understand more.

I agree with Elaine, something needs to be done so that women are fully informed of their options, the possible consequences of each treatment. It is as if women in this situation should be given the chance to join a support group BEFORE the whole thing starts. And then continue with the process. Is this legally feasible? Could protocol accept this? Can they (specialists and medical team) actually see the relevance of this for us (the patient)?