How are YOU monitored for Recurrence or Mets?

I agree - it is insane & alarming! My follow-up is breast surgeon to look for local recurrence annually then gyn visit annually where they also check for local. So basically six month checks for local recurrence. NOTHING for distant mets. I AM CONSTANTLY SCARED. I feel every little ache, pain, etc. is possible mets. It is maddening!!!!

ASCO guidelines for followup:

http://www.cancer.net/research-and-advocacy/asco-care-and-treatment-recommendations-patients/follow-care-breast-cancer

lulud and warrior, unfortunately there IS no way to monitor for mets. None. It will either be that you do metastasize or you don't. They simply cannot "catch" it before it happens unfortunately! BC just does not follow any rules. It does not go from stage one to two to three and then to four. It is circulating in your body (blood stream) if the treatment you receive does not kill it off. It can lie dormant for life OR it can set up in bones, lungs, brain, liver etc. and begin dividing. They still have not figure out the mechanics of why this happens to anywhere from 25 to 30% of women with invasive BC. They just don't know.

I find it amazing and alarming as well but that is what the facts are so they do not scan for mets as it is not good to get that much exposure to radiation and pet scans are very high in radiation which as we all know has been known to cause cancer. Yearly pet scans would be detrimental to us and as they are very expensive, insurance would not pay for something that is not known to benefit someone in terms of prolonging life.

As scary as this is, this where diligence comes in. Monitor yourself as best you can and don't ignore something that lasts longer than a few weeks like severe bone pain or coughing.

I know none of this will make you feel better, but that is the way BC is. It either will...or it won't. No stopping it before hand unless you are lucky enough to be in the 70%+ who kill it off completely with first line treatment.

To echo all the above, my MO sees me every 4-5 months...my choice-she said I could come every 6 now (down from every 3 for the first years), but I'm not comfortable with that for some reason; I'm high risk, and she knows it, so I just feel I should go more than every 6.

I take my aromasin, get my hyper-exercise, watch my weight, keep my BMI below 20, eat organic, mostly plant-based food, get Vit D supplements, do monthly exams (I have a BMX but there is still the risk, since MX can't get every single cell/check under my armpits, blah blah), etc etc almost ad nauseaum.

SHE orders CBC/blood work before each visit and does a faux-breast exam (since I have implants now). I freak out before each visit and when they are done, I ask her about the newest treatments for bc, like the one I'm doing research on now, metformin for metastasis, you know, just in case. She shares her conference findings with me and we talk about the newest txs.

She also said catching mets, if I had them, early, wouldn't change any treatment options. Kind of grim, but there it is.

Then I leave her office...nearly fainting with relief. That's been my experience so far. A few blips like a low white count from time to time, or one time liver enzymes a bit higher than normal, so I have to re-test. My whites have always been on the low normal since chemo anyway. I realize that.

In between I try to live my life and not focus on what I had back there in the past. It works sometimes.

My MO must be a lot more laid-back than most. Or incompetent. lol

She does NO tests of any kind. No blood work. No scans. No physical exam even. She has me pull up my shirt and takes a quick look at my scar. That's it.

Just orders my annual mammograms and makes sure I'm still taking the evil little pill every day that makes my life totally suck.

I get a more thorough exam from my family doc once a year, honestly.

Hi

I am 7.5 years out--- for first 3 years-- 2x per year with onc-- mammogram and MRI... now I see onc 1x a year--- I am off meds-- have a mammo annually, MRI every other year (my choice). No blood tests (she does not think they are reliable) clinical exam and general assessment-- also see my pcp and my gyno--- so I feel covered.

I used to want alot of scans, but then I had a thyroid issue and they found a small nodule on my lung and had to follow that until it disappeared--I just found all the testing and CT scan radiation to be too much.

My onc told me I could stop going to Dana Farber and just see my pcp if I wanted-- I declined..... I feel a little safer having my testing done there-- probably nuts, but that is how I feel. I now completely understand that if it is going to recur, there is pretty much nothing I can do about it.... so I am working to just be in the present!!!

I have been complaining about rib and back pain since August. Had xray then and was told nothing there. I had a bone scan in December and was told it was normal and that I should do physical therapy. I went again last week and said it still hurts, I cant sleep, somethings wrong. They finally did pet scan and told me I have a 5.3 x 4.7 cm mass in my right lung that is either breast cancer spread to the lung or lung cancer. They are scheduling a biopsy for next week and im so scared. I feel like ive been walking around with thiscfor six months and noone listened to me. I was going for follow ups every three months. They kept telling me the pain was from the reconstructive surgery. Now I feel so stupid for not getting a second opinion.

themomoo, I am so sorry you are facing this. I am glad you finally have a scan completed and that sounds like the source of your pain. A friend of mine had his lung cancer found from back /rib pain. No coughing, just the pain; he was a non smoker.

After the biopsy its certainly within your right to go for a second opinion. Perhaps find an Onco who will more quickly look into your concerns an escalate the imaging type if pain persists more than two weeks. I'd have frank conversations with any second or third opinions . Good luck, I hope you have an easy procedure and are not in too much pain.

themomoo, first I am so very sorry that this happened. Most importantly, please do NOT blame yourself for this. You expressed your very valid concerns and your doctors did test but did not find anything...at first. It is human nature to believe our doctors when they tell us nothing is wrong and that it is pain from surgery. We want to believe that they are right. The fact that your pain persisted and you finally got a scan is likely the scenario most of us would experience in your situation. It was not YOU. Doctors do not like to believe that progression happens, even though it most definitely does so I guess they look for other explanations first. Seems backwards to me. I think they should rule out serious first and then work down from there instead of up.

Hugs and if they don't call soon, CALL THEM. You should not be waiting for them this long when they told you they would call yesterday. Please know it was not you. It is just so hard to get some of the doctors to think that you just might have a really serious issue because often it turns out not to be the case.

Keep us posted.

Thank you April. Right now Im at the point where every time somebody says something nice I cry. Im going to call the doctor in a little while. It all seems so overwhelming. I just finished Herceptin in September and never expected this again so soon. I have to have my 22 year old daughter come over later and tell her and its going to be awful. Anyway, thank you for your encouragement and comfort.

Artista, many of our MOs give us choices...I was given the choice to come every 6 months because my MO trusts that if anything feels "off" earlier than that, I'll call her. But I am more comfortable with 4-5 months, my MO lets me do that too, and I don't know why I feel better with that schedule. Security blanket, I guess. My insurance has no problem paying for visits whenever I make them.

Claire in AZ

So sorry to hear you're going through this themomoo. I pray it will be something else. And like others have said, it's not your fault. We rely on our educated experienced docs to tell us what to do. How do we know otherwise? Scans and such have their own side effects which needs to be considered in each individual case. We are not docs to know to push or not. I hope you find a proactive MO. I have one who also cares and it makes a big diff no matter the news for me. When my MO told me my CT showed a lung nodule and something suspicious on my pelvis, after the oh no came the thought of I'm so glad I have you in my ball court for she is very caring as well as a good respected MO. I wish the same for you, to find someone like this---and best wishes.

Artista, I've heard that so many times and felt it too. We are doing something active when we are going in for our schedule treatments, and when we don't have that action to take or schedule to follow anymore it freaks us out. I try to believe that each time I run/go to bikram yoga/hike/weight machines/take my Aromasin, etc. I'm getting treatment. I am, but it's self-administered, so my perspective had to change a bit.

Hugs,

Claire

the momoo: I am in the process of testing for metastatic cancer to my lung. I had fine needle biopsies on 2/2. I have had CT scans monthly since November. Now, I am waiting for PET scan date. If you have any questions regarding the procedure, please reach-out to me. Lis

After the needle biopsies, my oncologist advised me that they did collect tissue to perform a pathology. WTF. Thus, the need for a PET scan. This scan will only detect cancer - not the type. Let me know what happens on Wed. Hugs, Lis