For those who have experienced progression, did you feel it?

Hi Teri,

I bet you'll get a wide variety of answers. Some women were quite sure they had progression due to symptoms and others felt great so were quite shocked. I have not had progression, but I also had no pain or any other symptoms from the bone met that led to my stage IV dx, whereas some did have pain/symptoms. Since your scan is coming soon, I'd just give the mo a heads up on the pain so that the area can be examined carefully on the scan. Wishing you the best.

Terri, I am glad you have asked this question. My onc had me down to a yearly PET scan and reasoned that I would have symptoms of progression and re-scan earlier if that happened. Then last fall the insurance company would not authorize the yearly PET as I have no symptoms of non-bone metastasis. However we see many women here who are surprised by progression as they had no symptoms!

Yes and no. I felt my original breast tumor because it throbbed from the moment I found it until they cut it off. Then they scanned and found a tumor in my liver, but I didn't feel anything, ditto for progression a year later in a lymph node. However this last progression, I have been in a lot of pain in the liver area. I pretty much knew my latest scan was going to show progression based on my pain levels and it did. Although my oncologist does not believe the pain is coming from the additional tumor in my liver, but rather the nodal mass in my abdomen is growing and pressing on other things causing the pain. So in this case, yes, I do feel pain from the progression. But I will also say that I had hip pain before that was so bad I was convinced it was cancer, but it wasn't.

My mother has widespread bone mets and mets in some lymph nodes. For over 3 years now her pain has been a better indicator of progression than her scans. She begins to feel a pattern of pain long before her scans are able to detect changes in the size of her bone mets or new mets big enough to be seen on CT or MRI (we don't use PET here).

The pain in your other hip might be from the way you've walked to compensate when the other side was in pain or because of the changes to your bone there. My mom's right hip is in rough shape and as a result her left on experiences pain because of the way she walks even when she thinks she's not walking differently or limping.

Good luck on your scans. Praying for great results!

Sometimes I've predicted progression, but I've been wrong a number of times too. I've had a couple times when I was absolutely convinced I had progression because of pain that ends up being nothing on the scan. I've gotten better at predicting whether a treatment is working or not in the past couple years just from the school of hard knocks. I agree with Susan's comment - often it is more a subtle change in my energy level that clues me in before a more tangible thing like pain, though it is really hard to tell because treatment itself takes such a toll over time.

I've had off/on pain in my hips and knees that wasn't there before cancer. I believe it's from favoring the cancer side. I did PT and it made a difference. Also bought new shoes.

My spine mets do not hurt. Before my liver mets were dx I was singing and dancing around the kitchen. I felt great after having my ovaries removed. I was shocked with the dx.

My center doesn't look at TMs. My fatigue is different than before but on new meds.

I think we know our bodies best. My RO believed me. My new MO seems to believe me. The old one told me not everything is cancer. While that is true, I have never felt this tired or sore and it's all SEs from the cancer preventing meds. So in my book it is cancer related.