How are YOU monitored for Recurrence or Mets?

I go every 3 - 4 months for a physical exam and discuss concerns. I do not have mamos, US, tumor markers or scans on a routine frequency but I'm not comfortable with that approach so i push for a chest scan once a year and a abdominal scan once a year spaced out around every 6 months. I do what I have to do to feel i am getting the surveillance I need. Is it perfect NO, does it help ease my mind YES are they accurate or reliable not sure. xo

jenjeni...This time I'm with you with Tumor markers test.

When i was diagnosed my levels were perfectly normal.

Chest scan is a good idea..

Hugs

Routine blood tests (no tumor markers); x-rays, MRI, or CT (depending on symptoms) for any unexplained pains that last more than a few weeks (doctor says two weeks, I usually wait a month). Physical exam every 4-6 months. Breast ultrasound once a year.

Yearly mammograms, yearly MRIs, physical exam by oncologist every 4 months.

My MO doesn't do blood work or scans for my stage of cancer after BMX. I had appointments every 3 months the first year, now I'm moving to every 4-6 months. I had a physical exam at my last appointment but that was the first one since surgery. I assume I'll be moved to once a year after 2-3 years, then to my primary care physician after 5 years.

I go every three months to see my MO. He does a CBC, CMC, and tumor markers. Since I am on letrozole, he said that he will monitor me every 3 months for 3 years and if I am NED at 3 years, he will see me every 6 months until I am done with letrozole. He said according to studies out now, that he wants me to stay on meds for 10 years, but you never know what new information will come out for us.

I asked my BS about yearly screenings since I had a BMX. She said no mammograms, no ultrasounds or MRI unless I notice a lump or problems. She said monthly exams are my best friend. I don't know how I feel about that, but I guess I go with what works for now.

It frustrates me when they say if you have a BMX, there's no way to monitor for local recurrence. There are ways, they just choose not to use them. It infuriates me that women at low risk can get yearly mammograms, but women who've had breast cancer cannot get yearly ultrasounds, etc to monitor for changes. Local recurrence after BMX may be less common than after lumpectomy, but it is not unheard of. I am exhibit A of that! The key is if you notice ANY changes, insist on a biopsy. My docs were 99% "sure" that my new lump was scar tissue. I told them I was 99% sure I would not sleep until I knew for sure because my gut told me otherwise. They gladly obliged and did a biopsy. I am so very glad I insisted on it! It is hard to question doctors, but you MUST be your own advocate.

We debated adriamycin the first time, but since my oncotype was low and there was debate on whether or not to even do chemo, TC seemed like a good middle ground...keep cancer at bay, without possible toxicity to heart (because I do have a heart murmur). It also allowed us to have something else in teh arsenal the next time around.

What my MO told me when I asked her why people are not routinely scanned each year after invasive cancer is the following:

If any stray BC cells are circulating in the system and set up shop in distant organs, then and only then can they tell that you have mets. Checking for mets ONLY makes sense if symptomatic because it does not follow a set pattern of going from stage to stage. It will either metastasize (which can't be cut off at the pass prior to it happening nor can it be seen on scan) or it will recur as a local recurrence in the breast which should be monitored as always with either mammo (if you still have breasts) and/or checking for lumps and the getting ultrasound or MRI if any found.

Tumor markers (if accurate for you which is not the case with everyone as you have read) can indicate something is happening so blood work is routinely done (at least by her) every 6 months initially (unless Stage 3, then every 3 months) and then yearly after 5 years (that is her protocol, not all MO's apparently) and she said that none of these tests save lives because you cannot "catch" cancer cells that are going to metastasize before they do after your active treatment is over! She said the amount of radiation involved in a PET scan is so large that it is not a good idea to routinely do them. If symptoms last longer than 2 weeks then she will scan.

This makes sense to me so thought I would share. You can agree or not agree but this is what she told me when I asked her for a friend. I am DCIS so do not get scanned ever (except my mammos of course) unless I recur as invasive.

Edited to add that Kbeee is absolutely right. Advocate for yourself if the doctors do not listen to any concern you have. It could save your life!

I wish there were a reliable way to monitor me but my onco pretty much said that in my case, we are going by any odd symptoms.

I had a bilateral MX to there is no way to do mammograms. I wish they could do ultrasounds or CT scans or something, but nope. Tumor markers are unreliable so she doesn't do them. I feel like I am flying without a net.

I get yearly MRIs on my remaining breast because I'm high risk due to family history. I'm glad because it covers the mastectomy side too. No tumor marker tests because they're not reliable

I'm like akj above. By having just unilateral mastectomy, I can get MRI on the remaining breast annually (with a 3D mammogram 6 months later). The scan is conducted in such a way that both sides are seen so it helps to know that the radiologist is getting a look at the surgical area: chest wall, etc.

For those of us who had chemo, blood tests may be good for catching myelodysplastic syndrome=MDS, a type of leukemia, which Robin Roberts had treated by bone marrow transplant. No tumor markers are followed by my doc.

A spike in serum calcium could be a sign of bone metastasis which means I don't mind having chemistry/metabolic panels twice a year, along with the CBC and differential.

Be sure to get DXA every year if you're on an aromatase inhibitor - need to monitor skeletal density and be aware if osteopenia develops.

These are the guidelines from the NHS in England.

Quality statement

Women treated for early breast cancer have annual mammography for 5 years after treatment. After 5 years, women who are 50 or older receive breast screening according to the NHS Breast Screening Programme timescales, whereas women younger than 50 continue to have annual mammography until they enter the routine NHS Breast Screening Programme. Screening is done every three years.

I am now 51, six years past dx and I'll have my next screening when I am 53. It's not what I imagined follow up would be like.