How were you monitored for recurrence?

Same here, no tumor marker test or scans unless I report symptoms.

Seeing BS every six months for physical exam of breast and mammo annually, as I had a lumpectomy.

I have mixed feelings about this as I know some are followed more closely w scans/tumor marker tests, but they say I don't need those due to low risk of recurrence. So that is good, but I wouldn't mind the reassurance these tests might offer. On the other hand those who have scans/tumor marker tests often report being anxious about the tests and I don't need more anxiety in my life. I had my first post treatment mammogram the middle of this month and was a basket case for the entire week before.

I may be different because I'm an er negative, but my breast doctor is monitoring me with scans, but spreading them out to avoid too much toxic load at once. I guess with negative receptors, they really need to catch anything early, not sure. At first scans panicked me, but if I do have a recurrence, I would like to have it caught before it spreads, if that is even possible. Who knows

I'm to see a doctor every three months for the next 5 years, rotating between the BS, MO, and RO. I don't know what kinds of tests will be done. My first post treatment mammogram is scheduled for this month. After 5 years I drop the BS and RO and just see the MO every 6 months. After 10 years, the MO kicks me out of her practice assuming all is well. I'll be on Tamoxifen or AIs for 10 years

My follow-up at stage 1 was a visit to my oncologist every 6 months with blood work- CBC and chemistry. I was on an aromatase inhibitor. I also was scheduled for a mammogram for my remaining breast yearly.

Scans were not part of the protocol without symptoms. Personally, I think this is a mistake. Since nearly 30% of early stage BC goes on to progress, I would like to see at least a bone scan or PET done at 2 years for every patient who requests it. By the time my mets were found, I already had a crushed vertebra and could have been paralyzed. My blood work was fine, even when bone mets were raging throughout my spine and ribs.

Also, I am not one to believe that catching it later has the same results as earlier detection. Had I been caught earlier, I would have been put on a different AI, and would have been given Xgeva, which would have protected my bones from breakage.

With a positive lymph node and a 22 oncotype, I'd want a scan at two years out, regardless. And then every two years after that. JMHO

I see either my RO or my MO every three months alternating between the two. My MO does blood work including tumor markers every 3 months. I am only getting a mammogram yearly as far as scans go. I protested over this as I had faithfully done my yearly mammos since the age of 40 yet I still ended up with a 2.8 cm tumor in between one year and the next. I had a mammogram in June and also asked for an ultrasound. I'm going to ask for an ultrasound at every mammogram. However if I have any concerns my MO will quickly order a scan.

Nancy

the ultrasound is so non-invasive and it is what initially diagnosed my lump. I found it myself and insisted on an ultrasound first. My diagnostic mammogram was done as a follow-up after the ultrasound because for some reason I guess the standard of care said no Bi-Rads rating without a mammogram, which is complete crap. My ultrasound said my tumor had vascularity ( blood flow), was taller than wide, and spiculated. What more did they need? So I went through a diagnostic mammogram which said yep, the ultrasound was right. I have a lot of faith in an ultrasound, and for that matter an MRI. My breast surgeon did one before surgery, and it helped her define exactly what and where to remove. And the tumor was the exact size as on the MRI and she was able to get great margins, the smallest one was .5 cm because there was nothing left to take between the tumor and my skin.

My PET was scary for me, but breast doctor said if mets are there, not having the scan won't make them go away. It just gives us more data to treat you appropriately. And as an er negative, I need to catch anything early since I have no hormonals to throw at this monster.

Hi all. Well the PET scan did reveal that I am Stage lV, with mets to the lung, breast, thoracic and abd. lymph nodes, and my liver is >75% involved. I have started Kadcyla, with my second infusion this week. Yeah, I too wished I had pushed this earlier. TM's went to 2068 and are down to 1650 now. Maybe I'll get a little more time. I also don"t buy the 'finding it early, doesn't change to outcome' line. It is easier to fight it less tumor load.

Moni

I was diagnosed Triple negative back in Feb. of 2009 but my onc still adheres to this schedule with all of her breast cancer patients. First three years I was seen every three months. Tumor markers were done every other visit - full blood work each visit. She uses the tumor markers only as a baseline, i.e., if they are pretty steady at a normal number and suddenly spike to above average, then she will redo a month later and go from there. Scans were all done prior to treatment to make sure nothing was hiding.

Years 3 -5 she sees you every six months with same protocol as above. After 5 years, she sees you once a year or anytime you might want to see her prior to that.

She orders scans only if you have a persistent complaint for two weeks or longer - no matter what it might be.

Hope this helps a little. Please know I send you all my very best wishes always.

For many of us, if you have had BMX, there seem to be no exams or scans... until symptoms. My MO does not look at tumor markers. They (MO and nurses) always tell me that my symptoms are either SE of the drugs or unrelated to BC... I am seen at Dana Farber in Boston. DF follows protocol and standard of care? I have a lot of SE and other "unrelated" aches and pains that I did not have before BC! According to the American Cancer Society, the new guidelines would have us not perform self-exams: "Research does not show a clear benefit of physical breast exams done by either a health professional or by yourself for breast cancer screening. Due to this lack of evidence, regular clinical breast exam and breast self-exam are not recommended." This worries me. My cancer was felt by PCP but not seen on mammogram... luckily my PCP also ordered an ultrasound... It seems to me my MO is NOT concerned about early detection of recurrence either...

The BC floor is extremely busy and very rushed... I am hoping that if I am ever diagnosed stage IV, they will be taking more care and time with me... and that the lack of care and time right now is because they are caring for stage IV women so well. I am not sure how they will ever determine that I am stage IV? When I was on a Palbociclib trial, they followed me more closely -- there must have been different protocols? I had headaches and nausea and they ordered a head MRI even though I have always had migraines? It seemed odd. So, for many of us, there is very little monitoring. And the new guidelines suggest less is better?

The OC I saw actually told me there are no tumor markers for BC. So what are these tests so many on here are having done to monitor them? Why the difference between OCs in terms of who is monitored and how? And this was an OC at Vanderbilt Breast Center. So odd, I just did not know what to say.

As for self-exams, at this point I have no idea what I could be feeling in my left (treated) breast. Between the scarring from my surgeries and the changes caused by radiation, I don't see any point. I must say the breast exam I get from the surgeon and staff at the breast center seems a lot more extensive than I ever got from my gyno or a GP, so I'll keep making the drive to Vanderbilt for that and because I know they are very up to date in terms of using the newest mammography equipment and have well trained and experienced radiologists to read them-something I'm not sure our local hospital/women's center has.

boatin - there is also testing for whether you metabolize Tamoxifen, but it is similar to tumor markers in that many oncologists discount the veracity.  It is a test that measures how well Tamoxifen, and a number of other drugs, are processed by you as an individual.  Here is the info, and there are several threads on BCO regarding it as well.

http://genelex.com/pharmacogenetic-tests/cyp2d6/

https://community.breastcancer.org/forum/73/topics/798301?page=8#post_4529920

https://community.breastcancer.org/forum/78/topics/834942?page=1#post_4495030

Type CYP2D6 into the search box on this site and other hits come up.

kayb-I totally get that there ARE tumor markers for BC but I was sort of peeved when my doctors told me there are not. If they don't believe they are accurate or worth using, they should tell me that, rather than deny they exist.

Moni. Sorry to hear about your results. Good luck with the treatment. Likely you know that BCO has lots of good info and support for stage IV people.

Goldie. How vigilant do you have to be; not symptoms and then stage IV diagnosis? Good on you for pushing your onc and likely the bone mets can be kept in check.

My monitoring. No tumor marker test or scans unless I report symptoms. Symptoms should be persistent and progressive.

Seeing BS every six months for physical examination.

Trusting like hell in the bottle of Tamox. Saying this, I have a male friend with BC who went stage IV after four years on this very drug.

My takeaway from this post is that we should be our own advocates and follow up on anything that bothers us. And, naturally, get on with enjoying the things that give us pleasure in life.

Most of us have very good odds for long-term survival, so keep that upper-most in your mind.

If we already have health problems that mimic the symptoms of mets (arthritis, spinal stenosis, osteoporosis, COPD or asthma etc.) then how will we ever know we have mets? My bones hurt every day. This question may be most relevant for those of us over 60:)