how do we find distant metastases from breast cancer

[63Fever]

My wife is now NED. When we talked with her oncologist, they told us her chance of re-occurrence 8%. I asked the oncologist how we were going to scan or check her for a distant metastasis. We were told they would go off of symptoms only for distant metastasis, and mammogram only for breast re-occurrence. We saw her radiation oncologist, and she recommended breast MRI for her. The problem is we have Kaiser, and they sub out their radiation services through John Muir. What is one to do, and what are your experiences with this. Just wanting to know if I'm off base here.

[Becky]

Many doctors think the same way yours does, wait if symptoms occur before scanning and using mammogram or other imaging for the breast. My doctor uses these methods as well and I personally agree due to not getting the radiation in scanning (and I had a more than double recurrence rate than your wife).

I can't comment on the insurance issues as mine has been good to me on getting other breast imaging outside of mammograms (such as MRI or BSGI (Breast Specific Gamma Image)).

Its scary in the beginning and you have to get to a new normal that really does become normal again with time. I am still here and I had nodes involved and she will be here too.

Also, if you are not comfortable not getting scans, discuss this with your doctor. Many will scan in the beginning if you really want it and after a year or two, you and your wife may feel more comfortable to stop then or continue. Its all about your comfort level, not your doctor's comfort level (and your doctor will feel more comfortable if you and your wife are more comfortable - squeaky wheel gets the oil).

I still feel this is a personal decision - scanning and tumor markers (which my doctor does).

I hope this helps.

[vlcarr]

I do understand totally where you are coming from. My doctor does the same thing as your wife's and she also doesn't do tumor markers. I have one herceptin left and will see my doctor for the last time on that day as well. She said I would see her every 3 to 4 months after that and tests are based on symptoms that last more than 2 weeks.

I will be asking more questions about this at my last visit. I'm not sure if there is any blood work done but I think I remember her saying there would be some. We specifically discussed tumor makers and she said they (which I assume meant not just her but all the BC doctors) did not use them as they are not reliable.

Becky, I'm sure this is part of adjusting to my new normal but it does seem so scary. I have a friend who was treated at a different hospital here, and they don't do any tests either.

I'm so looking forward to treatment being over, but scared at the same time which I've read is "normal" now. However, like Becky said, I hope it gets easier with time.

[Rich66]

What is the diagnosis/treatment history up until now? When I asked my mom's first onc about follow up scans after adjuvant treatment, he said theye were unnecessary and that if she recurred "we'll give her treatment". He failed to mention that catching recurrences early can make significant differences in treatment options and potential outcomes.

[63Fever]

Hey guys, thanx so much for the replies. Rich, that is exactly why I was concerned. Once symptoms are seen, or felt, the cancer could be advanced. My main mission in life right now is keeping her healthy which she is. I just want to keep her that way.

She was Diagnosed on March 10, 2010. She is her2 negative and ER/PR positive 95%. She had a left mastectomy, on 4-10-10, and is now NED. I know she has a pretty non aggressive cancer, but still its cancer and scary.

[Sherryg683]

I'm assuming your wife was early stage also. That is why they are not wanting to do any other scans but mammograms. Most oncologists will feel this way. From my experience, I never had any symptoms and I was stage IV when diagnosed. My mammogram the year before was clean. I was NED 4 months later after treatment. My oncologist did pet scans on me every 3 months for the first 2 years and every 6 months now. I think we are going to move it to yearly when I make the 5 year mark. My oncologist is a rareity in the fact that he wants to do whatever he can to make me comfortable and feel safe during this. If I said "no more scans" he would go along with it. Now like I said, I am stage IV. I don't really worry about the dangers of radiation because face it, i've already got the worse here. I have read many articles that do confirm that catching metistatic cancer early and when it may be small and not spread all over has a better chance of getting rid of it. Some oncologists disagree. Now if I were your wife, early stage, no lymph nodes, non agressive cancer, I would be more than happy to move on with the next chapter of my life and not look back on this one...sherryg

[63Fever]

Thanks for the nice post, and the info Sherry. Yes, my wifes cancer was 1st stage.

[Lien]

8% risk of recurrence is really, really favorable. If you get lots of tests, you may get a lot of anxiety and false positives and perhaps treatments or invasive procedures you don't need. I did not have elevated tumor markers when I was diagnosed, yet the tumor was there. So for me, they are not reliable at all.

I had annual mammo's, regular checkups (3 monthly for the first year, bi-annual for the next 4, and now annual) and am doing fine after 6 years.

The hardest part is trusting your body again.

Love

Jacqueline