The eternal question - how do you know?

I was diagnosed w/ mets & ibc at the same time.  I had no idea.  I did not even feel ill; I just had a red itchy breast. 

Terri

My onc has the same laissez faire attitude about follow up testing.  He feels that I have to present with symptoms before he will scan.  My breast surgeon does not feel the same way and since he does not drop patients after surgery like most surgeons AND I can actually get in touch with him, if I really feel like I need to be scanned or at least get an ultrasound I will go see him.  Like you, I don't tend to freak out about every ache or pain but the truth of the matter is that bone mets usually presents with pain.  Tamox and the AI's can also cause pain.  If a pain persists over a few weeks I would ask for a scan or some other type test.  If only for piece of mind. You sound like you are having a hellride on Tamox...they need to get your pain under control for your QOL.  6 Percocet a day must be zapping your energy too.  I am sure the wise ladies on here will give guidance that I can not.  I just wanted to wish you well as you deal with all this.

Hi,

I'm sorry but I think your onc needs the boot! I first had mets in 2008 which was preceded by an unexplained cough for several weeks which then turned into "atypical" pneumonia (in the upper lobes, whereas typical pneumonia is usually in the lower lobes). I had heavy duty chemo (again) and then remained on Herceptin. During this time on herceptin, my cancer markers where tested every 6 weeks. Then, one day, while STILL ON HERCEPTIN, I had a horrible ache in my right side after a large meal. The pain lessened but never went away. The CT scan showed a huge liver tumor. My onc at the time, had decided not to scan me at 6 months after my last chemo because "I was doing so well"  and my cancer markers were staying down. I often wish I had insisted on a scan at that time. Perhaps the liver tumor would not have gotten so big. I'm now on a T-DM1 trial. I know it is scary to "leave the nest" of your first onc. but sometimes it is necessary.

There are so many anti-hormonals now, why can't they try you on something else? You don't HAVE to do 5 years of Tamox. if you're not tolerating it. I had progression on Tamox, and then on Arimidex, and then on Faslodex, so I'm not on hormonals anymore.

I would seek out a good pain control doctor for the Percocet issue. They are terrific specialists.

To YOUR health! LOVE, Simba 

I was diagnosed with Stage IV mets to the bone a year after my second stage I IDC dx.  The thing that got me in for scans was horrendous back pain that made me feel like I could hardly hold myself up.  It was absolutely the worst pain I've ever felt and finally showed up on scans about a year after it started and was stage IV breast cancer mets to spine, ribs, and pelvis.

I just wanted to mention something about your leg problems on Tamoxifen-I think blood clots are a side effect of Tamoxifen.  I don't know how high the risk is for them, but having swollen legs and feet isn't good.  I understand your onc wanting you to stay on it for at least two years; just be really aware of your leg pain and swelling and let your doc/onc staff know if the swelling or pain gets out of control.

Hugs and peace! 

Hi, Ann.  I don't know much about this, but I remember when my mom had bone mets to her ribs.  She said that she "knew" what it was on a level that she couldn't describe.  It was constant, not variable with position or time of day or night.  Insistent, was the word I think she used.  But I've seen other women here describe things differently, so there you go.

For me; I ended chemo and started Arimidex, and for a few months I told my doctors that I felt better than I had before the cancer.  Then the Arimidex kicked in and the next year was hell--a lot of the things you describe: fatigue, weird pains, lots of tingling.  I was switched to Femara, and the symptoms are nearly gone and I'm better every day. (If you can take Armidex, you can take Femara; interestingly some women find the Femara has more side effects than Arimidex.  We apparently are all different.) 

I also started yoga once a week and it helps make the tingling go away.  Mine was nerve damage from Taxol and in my hands and feet. And, having done two years of Herceptin (had the LAST ONE on Friday, Yay) I think it's fair to say there are side effects to the Herceptin that seem to advance slowly, but they are there, and I found them to be cumulative.  I'm hoping to see some fingernails and eyelashes soon.

On the "how do you know?" note, this has troubled me a lot.  You know I had an atypical cancer-soup like melange of a tumor, and I fear that my probably-all-gone-but-then-again cells will not behave well if left alone.  I've asked my doc if I can get into the neratinib trial, because whether I get the neratinib or the placebo, what I will get is a level of vigilance that my insurance companies (and I have a good one with two back-ups) would never pay for in a million years.  Scans.  Tests.  Regular attentive visits.

My doctor only does tumor markers, and has said that the more likely effect is false positive, not false negative.  But with an atypical tumor, that isn't reassuring.  The neratiinib trial in my community comes with a genetic testing component also, which includes a lot of tissue testing that was never done in my original diagnosis--I presented with a lymph node, so the prescriptive protocol was clear.  

Not sure if this helps you.  I think your pain is probably postural and chair or activity related, and the tingling upward and downward that comes along can be nerve compression due to a bulging disc.  I'd move the appointment up and ask for an orthopedic referral, because if those nerves die, you will have lots of problems down the road.  Happened to me many years ago (when I was a young 'un like you), and the road back is long and uncomfortable.

Warmly,

Cathy