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

terri-c

I know, weird title. I have a tumor in my left hip, it causes me sporadic pain. For about 3 weeks now, I have pain in my right hip, and it feels like the pain in my left hip.

If you've experienced progression, did you feel it?

Pain in one tumor was how we found out I went metastatic in the first place.

I have scans scheduled for the 25th, so we'll find out soon enough I guess.

exbrnxgrl

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.

susan_02143

I generally have known when a treatment is no longer working, but not from pain or what doctors think of as symptoms. For me, it is about energy levels and feeling that my body is having to use its energy to fight. In the past, it has taken about 3 months after I feel unwell for the scans to show what I felt. As I have traveled farther down this treatment path, feeling what is happening inside my body is getting harder; masked by side effects of more harsh treatments.

*susan*

SonnyB

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!

hansaim

I have mixed experience. With some bone mets progression, I did feel more pain. But some times, not. When mets progressed to the lungs last year for the first time, I did not have a clue. Two weeks can be a long time to wait for a scan. I hope you have pain meds to help you.

brandall

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.

3-16-2011

I have had progression one time and I had felt pain for 6 months. One pet scan was clear then the next one 3months later found progression. So was the pain progression???? It does drive me crazy. My tumor markers are meaningless so pain and scans are how my MO checks for progression.

I have no answer for you but I do share your sense of worry. I hope this helps you feel like you are not alone.

Mary

GoldenGirls

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!

goldie0827

No pain for me, not even now, being 2 years into MBC. It was TM's that caused the concern for me. My insurance wouldn't cover scans either, as no symptoms were present. Glad I insisted with my onc, to at least do labs on me every 6 months, after I hit my 5 year mark of NED.

nancyh

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.

terri-c

Interesting responses, thank you all. My TM's don't tell us anything, and I haven't had scans since early October, so this will be at about the 6 month mark since the last scans.

At first I thought it was a compensation thing, except I don't have a limp on the left hip unless I am having pain, and I haven't had pain in the left hip since December. I keep a calendar of when I take the prescription pain meds and what for (hip, back or head) - it helps me let the onco know when the pain was worse since I only see him every 3 months.

The left hip was biopsied 2 years ago, and the biopsy took most of the tumor out, which is why the pain is only sporadic in that hip.

I've not convinced myself it is progression, but some of the people around me are concerned it might be, because it is a weight bearing pain (mostly only hurts when I stand/walk, with occasional twinges when I sit too long on that side).

I can't remember what it was like to have an energy level above always tired, but I have noticed I'm crabbier than normal lately

Zillsnot4me

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.

leggo

Yes, every single time, so I'm never surprised by scan results. I've been at this a long time so I'm pretty good at differentiating cancer pain from normal aches and pains. Recently, I challenged my onc about a "spot" he never, ever mentioned. I knew, he apologized. In his defense, he did have the excuse that it was minor in the big picture, but I was still a bit put out by it. I have noticed that whenever I have progression in soft tissue, I don't sleep at all. I mean like 3 or 4 days without sleep. If I have one of those insomnia episodes, I know what's coming

Best wishes for good scans on the 25th.