Getting pretty frustrated

Hi jmktmob. The facility which did my last scan told me they could mail me a copy of the radiologist's written report. I took that report to my acupuncturist (!), who explained what it said. She really spent time with me and it helped a lot. I had seen the scan on the computer screen at my doctor's office, but I couldn't make out anything on it. Just looked like light and dark layered shapes.

Maybe you have another practitioner that you see who could go over your scan report with you? Or maybe you could highlight the parts of the report that you would like explained and ask your onc next visit what they mean.

Does it really make a difference if we understand exactly where the cancer is? Yes and no. For one thing, no one can be sure where all the cancer is or isn't. Cancer cells travel in our blood through our bodies, even the bodies of healthy people. It is better for me to think in terms of how do I feel overall. I focus on living right now. I believe being present and fully aware in the moment is the lesson I am here to learn.

On the other hand, knowing where my tumors are helped me to visualize healing, and it helped my acupuncturist with her needles, so I say, if you want to know what's going on with your body, it's your body, and you are the client. You should be able to have your questions answered.

As to side effects from Ibrance, the short temper and hot flashes appear to be common when estrogen levels drop. I find that when I avoid meat, dairy, excess sugar, and alcohol I feel better than when I don't avoid those things. I did have great fatigue on Ibrance, but that went away when my dosage was cut from 125 to 100 mgs.

I don't know if it matters if you know where your lesions are, but I know exactly where mine are. My doctor always gives me the PET scan report, with an offer to actually view the scans which I no longer bother with, and then, together we go through the report. If the report of tumor locations is confusing to me, my doctor will touch my body to show me where they are located. My last scan didn't show any new spots, so we only reviewed where they had diminished and she didn't have to explain where those spots were.

You should get whatever information YOU want from your oncologist. In my case, the actual location of the bone mets is not determining my treatment. Sounds as though this is the same for you.

As to your family, can't help you there. Families are complicated and of course they want this all to work out.

*susan*

I actually pick up my cds when the test is complet

jmtkmob - My first mo was bad about not going over scans with me , however , when I mentioned it to ro , she happily obliged.

My new mo(2yrs) is the opposite. When I have scans , we go over the whole thing together. He wouldn't have it any other way, nor would I. Knowledge is power and you can be your best advocate with knowledge. We also review all bloodwork together.

I don't handle surprises well and want to know everything about the cancer and the treatments. I am a much better patient when I am prepared.

As for family, well you need what you need. My dh knows how I am and he is just as bad, honestly. He goes to every scan meeting and asks more questions than I do sometimes. He is my go to medical advocate should I not be able to speak for myself and he takes the responsibility very seriously.

I am sorry to hear about your rough patches. It sounds like you are having a tough time. I hope some of this helps.

Hugs and prayers

C