Update to my last update: the people who ran my blood said they mixed up the vials of blood with another patient. They offered to retest me at no expense. I go in tomorrow for my bloodwork retest. I can’t imagine how often stuff like this happens and how often it goes unnoticed. It says Mayo Clinic at bottom of my report but NP said Sloan Ketterling since I don’t know if there is a diff between the two hospitals, I can’t comment on which one made the error but it was an error nonetheless. Oh how I wish it wasn’t….<12 down from a beginning number of 301 at first diagnosis, I’d be doing the happy dance!!!! Thanks for listening and following along to my story.
UPDATE: saw the NP yesterday and she was flabbergasted as much as I was as to why my tumor marker result dropped from 76.2 to <12 but said she’d contact the lady in her office who has contacts within Sloan Kettering who ran the test to see what they will say. I contacted my NP this morning and she said they contacted SK and they will rerun the test. NP thought maybe they left the blood in the vial too long or there may have been some kind of mishap with the blood that was drawn because she has seen TMs go into normal range before but never by so much of a drop in number. Sometimes I think it’s a good thing I am such a pessimist, simply because if I didn’t question the result immediately in my head then I’d be extremely disappointed when I walked into that doc office yesterday and she said hmmmm that doesn’t look right at all, something must be wrong. Will update later if I find out what really happened. NP refused to retake the test but I’m hoping SK realizes they made a mistake somewhere and offers for me to retake it. Otherwise I will be waiting more than a month (18th if July) before knowing what my TM test result is for sure but sadly because they won’t redo this months test, I won’t know if the test was accurate this month or a mistake because numbers change all the time, but usually not as much of a gap as this one did.
I had ER+,PR+, HER2- breast cancer in 2014 with lumpectomy with 4 rounds of chemo and 32 rounds of radiation. In 2022, diagnosed metastatic to bone only. Even after treatment in 2014 my tumor marker test always ran in the 20s. Less than 38 is normal and more than 38 is abnormal. In 2020 my TM jumped to 40s so my onc ran cts and found nothing abnormal. We discontinued the TM testing and after my metastatic diagnosis began testing again. First test in early 2022, 301 followed by 150 on first test after starting verzenio and letrizole. My TMs continued to decrease to about the 50s until two months ago where it jumped into the 70s. I had began taking high dose vitamin D supplements due to a low level of 11. Had to discontinue because it caused severe rapid heart beat. On the very next TM test, I received a result of <12.0. WTH!!! Can this possibly be normal???? Even when I was supposedly ‘cancer free’ following my first diagnosis in 2014, my numbers were NEVER that low. I’m concerned that there is a mistake and I don’t see my onc until Monday. I have to wait the weekend to find out what her thoughts are on this matter so I thought I’d ask here.
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I think tumor markers are really about the trend in the individual. I was diagnosed as stage IV with extensive bone mets (de novo) in May 2019, and even before starting treatment, my tumor markers were in the normal zone. They stayed normal with no real fluctuations for 3.5 years on Ibrance/letrozole. We assumed tumor markers just weren’t accurate for me. Then, January of this year (2023), my tumor markers have steadily made a steep climb up. It took 5 months for scans to show extensive progression in my bones. Now my tumor markers are in the 200s. I have to remind myself, it’s about the trend.
Forgot to include I was stage IIA in 2014, non-aggressive with a less than 20% chance of recurrence.
I agree about watching trends. I also have extensive bone Mets, and in hips so severe on first onc visit she didn’t understand how I was still upright and walking. I am concerned because I also have Mets extensively elsewhere including the skull but they only do cts every three months from neck down. Is that your routine also? I don’t understand why they don’t do at least one mri per year to see if they is any progression in the skull. I was diagnosed in March 2022. Since I’ve been seeing an onc with yearly blood work since 2014 and didn’t discontinue the TM test until 2020 where my TMs stayed in normal range until 2020 where there was a slight upward trend, I wonder if that was my ‘red flag’ as to beginning of progression. I did have normal X-rays in January of 2022 due to a fall and of course it didn’t show any breaks or abnormalities but as far as I know X-rays wouldn’t show cancer in bone or on bone. I also have questions about aggressiveness of my cancer since they did gene dna or whatever they call that and the guy who I spoke to at caris said that the sample (biopsy taken from that extensive metastatic hip area) had a less than 20% tissue was infected. I guess going through life hoping they made a mistake in my diagnosis is wishful thinking 😂 but still….things that make me go hmmmm….this new TM reading is just very, very odd to me and another hmmm to add to my long list of hmmmm….my area is so infected with cancer sometimes I think we are a cluster which makes the cancer center I go to very busy. I go in with a list and forget half the stuff I want to ask. 😂 because if there is no change in my status, she basically boots me out the door. Thanks for your reply!!! I appreciate you taking the time to respond.
I personally would celebrate TMs that are less than 12! But yes, I completely understand that when something in your chart is unusual (for you) the what-ifs start creeping into your brain, even if they seem like good results. It happens to me too. 😆
I was doing CT and bone scans every 6 months when things were good, but then my TMs started rapidly climbing. CT and bone scan just wasn’t seeing my progression. We tried a PET/CT at my request, and my bones really lit up. It’s different for everyone. Some people say PET/CTs don’t work for them and CT/bone is better.
One thing to keep in mind, is that bone mets can heal, but they never disappear from scans. When mine were healed, they became sclerotic, almost like a big scab/scar. That might be what’s happening for you. Also, pain doesn’t always mean progression. Bone mets are notoriously painful for some people, even those who have no evidence of active disease.
Unfortunately mine are active again, but I’m hopeful we can get them back to sleep. I hope yours are healed and that you get lots of progression-free time. 🥰
I don’t want to get too excited with the lower TM in case someone made a mistake. 😂 I just can’t imagine there was so much of a decrease in one month. My last 3 month scan in early May didn’t show more hardening of bone. They’ve only mentioned that once in a year and that was in the very beginning of my diagnosis. Medicine is working at least for now.
Will your onc continue with ibrance/letrizole or do you think she will try another medication to get your numbers back on track?
I hope you hear good news soon about your situation. 🤗
haha, I get it. 😂 Honestly, you sound a lot like me.
Unfortunately I have to leave Ibrance and letrozole. We did a liquid biopsy and learned that my cancer has acquired a mutation to get around treatment. It’s called the ESR1 mutation, and it means my cancer won’t respond to aromatase inhibitors. I’m going on a very new drug called Orserdu (elacestrant), which is scary because I can’t find many people who are on it. It was just FDA-approved for the market January 2023. I’m trying to stay hopeful because I did well on Ibrance. 🤞
My tumour markers (CA15.3) were 19 and below 35 is considered normal but I have bone mets from head to toe. My oncologist doesn’t worry about markers as she feels they’re not reliable for breast cancer. They are for ovarian cancer and prostate cancer according to her.
I had an X-ray done to check pelvis pain so I think X-rays must show bone mets in some shape or form. X-rays are easy to get which is probably why she chose that to see what was causing my lower back pain. A work colleague has early stage breast cancer and thought she was ‘cured’ until she had a fall in the shower and broke her arm. It didn’t heal so they did an X-ray and discovered she had mets everywhere. She had only been in remission for a few months when the mets were discovered and she had only limited treatment after they were found.
I agree about the head scans. My oncologist ordered six monthly scans but left out the head for the CT scan order last time. I wasn’t happy and made a fuss and it was done but I had to have symptoms for it to be done. Their reasoning was that the bone scan would show what was happening there but my argument was that it’s a restaging scan and how do they know if I have brain mets without looking? I have balance issues and fell twice in November December so I wanted to have the possibility of brain mets checked. MRIs have a six month wait for them so I no longer have those with the CT scan but have a bone scan instead.
I don’t get PET scans because they aren’t useful for my cancer which is DCIS and ER+. That was what I was told when I asked why I couldn’t have it but I don’t understand that because I see people in America especially getting PET scans and they don’t have lobular cancer 🤔
When I was first diagnosed my mother rang her sister and told her and asked her to tell their brothers. Her elder brother rang mum straight away but her younger brother waited a week so the doctor had time to realise it was a mistake! Nope, it’s no mistake. Pity but that’s how life goes sometimes.
I use the Schrödinger’s cat method. Until you know the answer you can believe anything you like. If you want to believe there’s been a mistake that’s okay because until you have a definite answer you can believe what you want. No one can disprove it until the scan results come back. 🐈📦
My onc believes in watching trends. TM testing should only be used during treatment. She only agreed to continue my TM testing when I no longer had cancer because her predecessor used them before she retired and I was used to taking the TM test with that oncologist. I’m pretty sure my onc will say, we shall see after next months TM test if the downward trend continues and there was no mistake or if the TM increases and possibly there was a mistake this month.
Here in Louisiana for cancer care it’s MRI for targeted areas to show cancer, PET scans to show if there is extensive cancer, CTs during treatment to watch the trends, x-rays only if you’re worried about broken bones. I was told X-rays don’t show cancer most of the time. I guess there could be rare instances where they would????
The waiting in cancer care is the worst if you ask me. We want to know but scared to know so it becomes, should I look at my report (cts and blood work) which is a week before my scheduled appt (because a week is a long wait if you see something unusual on your report) or should I wait and see what onc says is on the report when I go in for that appt? 😂 I go through this scenario every month. Do I want to know or should I wait until I can get answers if the report is bad? And then it repeats again next month.
TMs can react to things besides cancer and alot of oncs don't use them because they aren't worth the anxiety they can cause! I've had MBC for a bit over 19 years and in all that time my CA27-29 was in the normal range for under 3 months! How we feel is more telling than tumor markers, Scans next.
wow! 19 years that’s great to hear! It gives the rest of us hope.
I agree that TMs cause anxiety and I’m not sure why they use them except for the fact it shows trends in between the 3 month scans. It works in conjunction with blood work I guess.
I am in the same boat here. My TM's in April were 12 and 289, going down from 600 in February. May, just a little over a month and they went up 77/800. Doc asked if I was in pain when I walked in and I said yes, but that was because my scooter fell on my foot. I freaked out when you showed me the numbers. My other blood work was great. Had pet scan last Monday and see the doc next Tuesday. If those TM's are correct, then I will be starting enhertu. I am er+/pr+ her2low. I too thought that maybe there was an error. Maybe the vials were left out or the person that did the 15-3 made a mistake. Who knows. I wish I could have the 27.29 done instead because it idone via machine and teh 15-3 is done manually. Plus, my vertebra and hips don't hurt as much as they did in Feb when the numbers were 600. Vinorbine worked for only 3 months? I just find this odd. This time, I don't know if I want to read the pet scan report prior to my appt or not and I go for my blood work tomorrow.
manually or machine, like hubs said someone made the error because if machine, they don’t work autonomously, someone is behind there pushing the buttons or inserting the vial of blood into the machine or however that works.
It’s always a struggle as to whether I want to look at the PET too far in advance of my appt yet I figure I need to know so I can ask the appropriate questions if need be. I usually wait until the night before my appt. I put it off as long as possible just in case it’s bad news. Good luck!!!
Pathology labs here have developed protocols to prevent mix ups after a patient died as a result of a lab test stuff up so it shouldn’t happen. Some labs are more anal than others but every vial gets a label and is immediately entered into the computer system. One lab gets the patient to sign each label to prove they checked the details too but my current lab only shows me the label and gets me to confirm it’s my name, birth date etc.
But at the other end we have to rely upon the technician paying attention to the job in hand. Nurses have protocols to prevent medication errors too but whenever the hospital reports their error rate it is never 0% which is astonishing as two nurses check the medication and the patient has to confirm their own identity too. So, while I expect that these kinds of mix ups don’t happen at all here, I’ll bet they do! In this case it wasn’t a life and death matter for you although it could have been.
I hope the lab involved reacts appropriately (lessons will be learned etc) and sorts itself out because it’s an important job they’re performing but it’s not hard to make sure that all the vials are for the patient whose details are on the screen.
More importantly I hope you’re happy with the retested results!
I’ve always heard medical mistakes is in the top three reasons people die. ThatTM didn’t hurt me but whose to say the person on the other end didn’t have his meds changed or something because if <12 is his/her normal and let’s say my score was 76 like last month, well that’s a huge diff. I sure hope the patient caught the mistake and asked questions before any changes were made to his treatment.
mBC dx July 2015. three tumor markers (TMs) were checked with initial dx. it was the rise in them that alerted the onc. TMs were retested, and they were the same. after the mBC dx, TMs were tested monthly through year end 2015. CEA was in range Oct 2015, CA 15.3 was in range in Dec 2015, and CA 27.29 was in range January 2016. TMs have remained in range, to date.
So my tumor marker test finally came back and unfortunately with an increase of 4.7 points. I have started my high dose vitamin D and I told hubs that if I die of a heart attack to sue happy the three docs who swore high dose vitamin D (50,000 weekly) does not cause heart palpitations. I know it does because it happened to me. If my TMs continue to rise next month, I will consider going to the cancer center in Houston (MD Anderson) because I don’t feel like I’m getting the best care currently. On a high note, after much discussion with my NP this month, we decided I should get that colonoscopy I’ve been putting off since Covid. She agreed since my mom had colorectal cancer and her female relatives had colon cancer (mother, aunt) that I shouldn’t put off my regular care just because I’m dealing with cancer. So next up for me, colonoscopy happy, happy, joy, joy!!!! NOT!!!! Unfortunately my gastro doc retired since my last scope. Ugh!!! Off to find another…..
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