Pain and when it’s a concern

Hi. I'm sorry you're going through this. I don't think getting a 3rd oncology opinion is going to be helpful here. The one you currently have sounds like they work on a much more standard plan than the 1st one. It seems to me all the follow-up with the 1st one was feeding your anxiety, and now being cut loose from that schedule is feeding it a different way. But the core problem is the anxiety.

Blood tumor markers as they currently stand are not reliable enough to be used as a standard of care test for most people. Waiting 2 weeks IS a good plan for checking for recurrence or progression. So this MO is doing the right things.

I recommend with all compassion that you talk with your doctor about getting treated for the anxiety. There are medications and there are talk treatments, such as CBT cognitive behavioral therapy. There is also MBSR, Mindfulness Based Stress Reduction. Here is a link to University of Minnesota's program in MBSR.

https://www.csh.umn.edu/MBSR

Best wishes to you.

Yep, I've been through with breast cancer (though we're never really through, are we?) and I've been through MBSR for anxiety. When I did it, it was an 8-week course. People in the group had a wide variety of concerns. Some were grieving, some had anger/stress issues, some had anxiety... My issue was anxiety, not related to cancer. MBSR gave me a lot of tools to work with.

But also, multiple approaches might be best for you (you and your doctor/s can decide that). And for sure if you try one thing and it doesn't work for you, keep trying. It's worth it.

mnsotamom,

Your pain sounds a lot like mine. Back, hip, leg pain. For me, add neck and shoulders and sometimes arms. Do you know what has caused the back, hip and shoulder pain that you've had since your teens? I have osteoarthritis all over the place, mostly mild but moderate around my neck. My spine is full of it. Because the spine affects every part of the body, I get on and off pain everywhere. 2 1/2 years ago I started on an AI, and I worried about how I would distinguish my OA pain from pain that develops from the AI or, more concerning, pain that could be the result of the development of mets.

What I've discovered is that I really can't distinguish between my OA pain and any pain that comes from the AI. Since I've been on the AI, I certainly have increased pain in some areas and new pain in other areas. However the pattern remains pretty consistent to what it's always been, which is that the pain tends to come and go, and over time it moves around. When I say that it comes and goes, sometimes it might be over the course of a day but often I have pain that is extremely bad for a several days before it eases up, or I might have moderate but noticeable pain in one area for 10 days or more. There are some spots where I pretty much always have pain, such as my neck & shoulders - but I know my OA is worse there. And even with my neck & shoulders, the pain ebbs and flows - sometimes really bad, other times it's present but much less noticeable.

I know that I could be missing something, and that does worry me sometimes, but to my understanding, metastatic pain will not follow this same pattern. Metastatic pain gets worse over time, it doesn't ease up. Maybe initially it comes and goes, but over time it will become more persistent and won't go away. So to keep myself from going crazy, I take a long term view of any pain I have - I monitor the pattern and as long as I get some periods of relief and the pain doesn't always come back worse when it returns, I assume that it's just arthritis pain or pain from the AI. In talking with both my MO and my PCP, they agree with this approach - in fact I just had this discussion with my PCP last week. Interestingly, while I'd assumed that most of my pain is from my OA, as I described it to my MO, she thought it's from the AI. I know she's at least partly right because I realize that a lot of my leg pain appears to be muscular, and muscular pain is common with AIs. (Lack of estrogen can lead to muscle cramps and poor circulation, both of which can cause leg pain.)

My MO does not do blood work but when I commented to her earlier this year that I had hip pain that was new since my BC diagnosis, and that it recently had become more persistent, she immediately ordered an x-ray. Turned out to be arthritis (but that x-ray led to a an unrelated incidental finding which led to other imaging which led to many more incidental findings, but that's another story). So she seems to follow the same guidelines as your MO - if pain is new and persistent for a period of time (the 2 week rule is common), then get it checked out.

Having said all that, are there times when I am experiencing pain and I start to worry that it could be mets? Absolutely. But then I remind myself that I have had pain for decades, that I have OA that is getting worse as I get older, that I am getting older and every human starts to get new pains and worse pains as they age, and I'm on an AI, which can cause exactly the sort of pains that I am experiencing. So I shove 'mets' into the back of my mind as the last and least likely possibility, and I monitor the pain until it eases up, which so far, it always has. And when pain returns to that area, which it always does, I remember "yeah, I had that pain before and then eventually it eased up" and I watch for the same pattern.

Since you have almost constant pain - not all that unusual for someone on an AI - what you need to do is find the thought process & approach that works for you, in terms of how your talk yourself out of thinking "mets!!" every time some pain flairs up. It's important to remain vigilant - if a new pain becomes progressively worse and more persistent over 2 months, you don't want to ignore it - but you can't live being always scared. Talk to your new MO, and come up with an approach that that he agrees with too.

A small side note. Since your diagnosis included IDC and DCIS, it would be clearer and more accurate if you state it to be 'IDC Stage IIB', not 'DCIS Stage IIB'. DCIS is the lesser condition, and DCIS is always Stage 0. When someone has both DCIS and an invasive breast cancer (a very common combination), the DCIS has to be removed but otherwise can be ignored - and because it's non-invasive, it's not part of the staging. A lot of women on this site who have pure DCIS get really worried when they see a post where someone says that had DCIS that's a higher stage, because they think their diagnosis could be wrong. It has to be explained that no, the other person's diagnosis was actually IDC, not DCIS. DCIS is only Stage 0.

As for your staging, your new MO is correct. As of 2018 a second type of staging was added. Based on the original (and still used) Anatomical TNM staging, the stage of someone with a 3cm (T2 sized tumor, 2cm - 5cm), who is node negative would be Stage IIA. But using the new Pathological Prognostic staging, that same diagnosis, if it is ER+/PR+/HER2- and grade 2, will be Stage IA. So despite the size of your tumor, which bumps you to Stage II, based on the prognosis of your diagnosis, you are Stage IA. See the two staging charts here: