What tests show metastasis

Karc80 · June 2014

Im 33 with 2 little girls. In May I was diagnosed with stage 2 grade 3 Idc 2cm, 0-2 nodes (looked inflamed but were negative) clear margins. ER+/PR+ her2- BRCA1&2 negative. Rt side mastectomy. Did fine on my first round of chemo. c/taxotere. Where my concern comes in is here. Since November, long before my BC diagnosis, I have been having rib/flank pain. They've checked for the usual, gallbladder,kidney etc. Liver enzyme is normal but I feel the pain along my ribs. I had shingles there years ago so they said or could be nerve damage? But I just don't have peace about it. I can not lay on that side or put pressure of any kind. What tests do I need to push for to show if there's any cancer in my bones or anywhere else? How is metastasized cancer diagnosed? Can you have clear margins and no node involvement but still have it elsewhere? Not trusting the docs at this moment since they've missed so much in the past. And I've googled my self 1 foot into the grave! Lol

kebab · June 2014

Stay away from Dr. Google!

You could ask for a PET scan. That's likely the least "invasive" as far as radiation, etc, and would show mets. Did they do a bone scan for staging at your original diagnosis?

Fingers crossed that it's something simple. Best to you.

Karc80 · June 2014

Thanks for the reply! No they diagnosed and staged me in May with the standard Mamo, ult, biopsy. My mastectomy showed clear margins and no node involvement so they said that was a pretty good indicator that it was caught in time. When I ask my onco for further tests he gives me that "smile". I generally like him but I'm getting annoyed. I have Kaiser and the docs are all pretty closely knit together. So jumping docs doesn't help much. Looking at your signature.. I see your liver metas is gone! AMAZING! Gives hope to those of us still in limbo that even if my DX changes there is still hope. Kaiser is quick to diagnosis and treat but they offer zero when it comes to treating the psychological side effects/ what ifs etc. Sending happy healing thoughts your way!

exbrnxgrl · June 2014

karc80,

I agree with kebab, in terms of staying away from dr.google. You can google "hang nail" and end up being convinced you'll die! I know this won't comfort you much but mets are sneaky buggers. Yes, you could have a PET , if your doctors authorize it, but given your dx, they might not. Also, although node negative is good, bc cells can travel through the bloodstream as well. I know I am not making you feel better at this point, but what I'm trying to get across is don't spend too much of your precious time and energy on worry. Testing, especially imaging is not totally innocuous. As for the doctors, medicine is not an exact science. Oncology is tricky. While more and more is known about bc, much remains unknown. As far as Kaiser goes, I am a Kaiser patient too and I think kebab (still) is as well. Both of us are at the Santa Clara facility . I did not have a good fit with my first mo and changed on the recommendation of my RO. I love my current mo and changing docs made a huge difference. Which Kaiser facility do you go to? Wishing you the best .

Caryn

dlb823 · June 2014

Karc, have you had a recent CA27-29? While I realize they're not always 100% accurate in every situation, when I had some pretty severe rib pain going on last December, one of the tip offs that it possibly wasn't due to rib inflammation or a slight fracture, as initially dx'd at Urgent Care, was that a CA27-29 my onc did came back at 137 -- considerably higher than my normal range of 10 to 12. But my liver enzyme tests were equally as concerning, which thankfully yours are not. So I hope there's a totally B9 explanation for your rib pain, but a CA27-29 might be something to ask about.

And that's a shame about Kaiser not offering any psychological support, which is such an important part of what we go through. When I finished my initial tx, I was asked what concerns I had going forward, and when I asked about getting past the fear that every little ache or pain could be a recurrence, the UCLA psychologist explained the three week rule to me, which has always been a great guideline. You basically give that ache or pain 3 weeks to resolve (the time in which most do), and if it hasn't, you tell your docs about it. That was very helpful advice to me at the time, and since your pain obviously has hung on for more than 3 weeks, perhaps that little rule could provide further ammunition to use the next time you ask your docs if it needs to be checked out, if only for your peace of mind. (((Hugs))) Deanna

exbrnxgrl · June 2014

Please re-check with your Kaiser facility as it Is not true that Kaiser does not offer psychological support, though it may vary by facility.

Kaiser Santa Clara not only has various support groups but offers a psychiatrist who specializes in cancer patients. When I was first dx'ed, I met with a social worker who let me know about all the services and classes they offered. Everything from yoga, meditation, nutrition to a weekly farmer's market. She even asked about my interest in medical mj. What part of CA are you in?

Caryn

Karc80 · June 2014

Thank you all for your replies! I am In the Inland Empire so I have Kaiser Fontana or Rancho cucamonga to choose from. I made a call to my primary care. She is amazing and ordered an x-ray of my ribs as well as a Ct. I've had some other issues since the birth of my second daughter so we will be looking for lots of things. She always has a wait but when it's your turn if you need an hour so be it. I told her that if I went by likelihood and percentages then I shouldn't even have cancer. I'm 33. She agreed.

As for my Onco, he finally did agree to a ct but only chest and abdomen the next morning was my primary apt. She said let's do it before we realized he put in the ok. She then extended it to include pelvis. Think he and I just need to get to know each other. We've only met once. But he always returns my calls and has been gracious with other things. Like helping me with the horrendous acne I developed after my first chemo. Time will tell.

I checked into other services psychological are mostly group meetings and the social worker said they tend to be older women that it might be better for me to do the brest buddy program etc where it is with someone that experienced similar circumstances. Full time work, little kids etc. Seems like they offer things they just need to improve on letting patients know. I'll do more investigating :-)

The ladies on these boards have been my psychological support and my replacement for Dr. Google for that I am eternally grateful!

Hugs and healing to all!

Anonymous · July 2014

You're still doing chemo...correct? And since you're ER+/PR+, you'll probably have adjuvant treatment after, correct? (You may not have gotten that far in your onc discussions.) But, even if there were mets-and we all hope there are not-then those may be the same steps they'd be taking anyway (I don't know enough to say, perhaps they'd be more aggressive?). But, at least you know that you're already FIGHTING the beast, no matter where it is. Although I TOTALLY understand your desire to know/be sure.

I also had an onc I didn't like (I called his office to say I didn't think I wanted to keep taking chemo and his front desk didn't even let me come back for an appt. to talk to him about alternatives--just dropped me like a hot potato). I was a single Mom with a full time job (and paying for my own insurance, which had no prescription coverage, so chemo wasn't covered anyway, and I worked for myself so I HAD to go to work after mastectomy and chemo. So I do feel your pain, and I hope you get what you need).

incognitomom · July 2014

Karc80,

I am sorry you are going through this too but your post helped me. I have had three episodes of severe rib/chest pain under my cancer breast in the past two months which I forgot to mention to doctors. I'm waiting for surgery to be scheduled but I'm definitely going to push for a PET and a CA27-29 test. Fingers crossed for us!

What tests show metastasis

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