I have been diagnosed with non-metastatic Breast Cancer 3 times since 2005 (2 rounds of radiation + tamoxifen and then a bilateral mastectomy in 2016). My final Stage 4 diagnosis came in 2022 with mets in spine, Lungs & lymph nodes. I was surprised at the diagnosis since I have had regular blood tests over all of these years which showed NO markers. I assumed that this meant that cancer was not present and that the bilateral mastectomy had finally put the “beast” to bed . My (new) Oncologist informed me that not everyone’s cancer shows up in blood tests. I wish someone had told me this in 2016!
I’m wondering if anyone in this forum can help me with information of how they deal with cancer that doesn’t show up in blood tests—especially how often they have scans. My doc has been doing dye CT scans to determine when the cancer is growing +/or spreading. I want to make sure I know when my meds need to be changed but I know the dye used in CT scans is rough on kidneys.
Thanks!
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PlutosNose
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My bloodwork only shows cancer markers when my oncologist specifically asks for a separate test (CA 15-3) to be done. Although I receive the regular bloodwork measures within a couple of hours, it usually takes a week for the CA 15-3 results to arrive.
The normal range for CA15-3 is 0 to 30. I think it would be unusual for someone with MBC to consistently register 0 on that scale but, as others on this site may tell you, not all oncologists pay attention to cancer markers, or even ask for them to be measured. Since cancer markers can be affected by other bodily processes, all oncologists do rely on CT scans to properly assess the growth of cancer tumours.
You seem to have quite widespread tumours (as do I) so your oncologist may have you do CT scans every three months (as does my oncologist). You could ask him (or her) whether it is necessary to have all your CT scans done with contrast dye given your concern with your kidneys.
Thanks so much for your input Cindy! I will ask doc about the CA 15-3 test (I don't know if I was getting this one but think not, since bloodwork came back in a couple of hours) and double check on the necessity of dye on the next CT.
Your question prompted me to review the 25 medical imagining reports sent to my health file since 2019. It seems that I am wrong in thinking that CT scans are often done without contrast dyes as all eleven CT scans on my file included contrast dyes. The imagining reports without contrast dye included a PET CT routine, two MRI chest without contrast, an MRI liver without, and 4 NM bone imaginings.
Thanks for your question. I've edited my original response to PlutosNose. I still think it would be worth asking your oncologist whether the dye is always necessary.
I always ask for no dye -- I have PET/CT scans every three months -- and they say they need it to see clearly. Not sure exactly what. The last time I asked and they said I had to -- but the facility was out of dye, so I got it without. Didn't hear anything about the scan being hard to read. I didn't realize it was hard on kidneys, just hard on me. I dislike the radioactive isotopes of the PET even more.
P.S. According to American Family Physician (aafp.org/pubs/afp/issues/20... "Possible contraindications for using intravenous contrast agents during computed tomography include a history of reactions to contrast agents, pregnancy, radioactive iodine treatment for thyroid disease, metformin use, and chronic or acutely worsening renal disease. The American College of Radiology Appropriateness Criteria is a useful online resource. Clear communication between the physician and radiologist is essential for obtaining the most appropriate study at the lowest cost and risk to the patient."
My CTs so far have also been with contrast but my husband has kidney disease and he has a yearly CT done (for another health issue) with no contrast. That's what prompted my initial question. Thank for taking the time to go back in your records.. it would seem that, unless you have specific issues with kidneys, the benefits of contrast dye outweigh any risks to the kidneys...?
I have been told that you need dye to show up mets in the liver.. also once you have had a scan with dye, they then compare.. so best to stick with it. (convo with my onc) He also does not use blood markers for diagnosis as he says they are not an accurate measure for every patient.. ( this is in Scotland uK)
Hi, it sounds like you're getting good care.'markers' from blood tests are unreliable and are not generally used to determine whether cancer is present/active.
I was stage 4 from the beginning. That was determined from scans. The markers were raised but not significantly.
I have a body scan and a brain MRI every 3 months. Both are done with contrast.
They have been very reliable in determining new areas of cancer.
Fortunately/unfortunately the relapse was in my brain. Stereotactic radiotherapy took care of that.
In summary, in the UK 3 monthly scans with contrast is the normal protocol for assessing cancer activity.
I hope this and other replies help to answer your question.
Thanks Andersl! The input from everyone on this forum is so helpful. It's also good to hear the similarities & differences from treatment approaches in other countries (I'm in the US). I hope your treatment continues to keep things at bay.
Sorry you're going through this. I too thought I was over the cancer after all my treatments in 2017... but no. Here in the UK they don't track tumour markers in the blood (unreliable). So they rely on self-reporting of symptoms if the cancer comes back.
I had extensive MBC diagnosed in 2021. I've had numerous scans with contrast dye since - not once has anyone mentioned this could harm my kidneys!! Just advised to drink lots of water afterwards.
If your kidneys are healthy it's probably fine - you could check with the oncologist. Btw now I have CT scans every three months to brain + body to check what the disease is doing.
Sorry to hear that your cancer has returned & I hope treatments are are going well for you. I'm amazed at the progress that has been made over the last decade.... Helps to keep things in perspective
I'm very relieved to find out that tumour markers in the blood are not as important as I thought. I was concerned about dye & kidneys as I'm getting monthly Zometa infusions which put stress on kidneys too but I'll just keep an eye on the bloodwork. (Sometimes the Docs get busy busy)
Be sure to drink lots of water after a scan. It flushes the dye out. I only have a scan every 6 months now as the bones are stable and cancer has never returned to the original site. (left breast). I do have nodules in the left lung but they are slow growing. Have had treatment now for 9 years.
I'll definately pay more attention to water after the next dye CT. I've been drinking what feels like gallons since starting on Letrozole since I get very constipated if I don't. Will be adding iBrance in January..hope not more constipation.
was reading some earlier posts today and I came across you. and realized we have not heard from you in the past couple months. perhaps you are taking a break from the board.. which I have done in the past. I really hope I am not being too intrusive. I wanted to say hello. and to let you know you are missed. and of course I hope you are doing well. XO
I just wanted to add that some people who have some issues with the CT dye and kidney function get their kidney function checked in advance of the CT to determine if it is safe to use the dye. Best wishes on this journey
Thanks for your input fancydog! It looks like kidney function is part of my monthly bloodwork (which the medical center posts online) so I'm going to PAY ATTENTION. The nurses who do my monthly Zometa infusion are really helpful & good at following the kidney function results and cut back on the strength of infusion if the numbers look iffy.
I am having metastatic cancer since four years .initially they said it is stage 4 but after lumpectomy and chemo they did a biopsy in my lungs and diagnosed that i have sarco diasys ( which i was mentioning to doctors repeatedly) and not cancer .they also downgraded it to stage 3 .now again 18 months back i had pet scan and they said I might have metastasis in my back bone lower didn't do any biopsy as it's avoided in the backbone. Started on palbocilib and fulvestrant took pet scan after five months and said i m responding to treatment .Now it's 15 months since I had my petscan and doctor told that there is no need for one and will do it when I notice symptomsi hope it's ok
I have sarcoidosis as well; sarcoidosis disease, as you call it. I am not metastatic, but I thought that I was because cancer was found in a lymph node. Early on, within months of my bc diagnosis, my oncologist ordered a lung biopsy for me, to be sure that the nodules on my lungs were not cancer. My Father died from lung cancer, although he had not smoked in 60+ years, which is why my oncologist was suspicious or the lung nodules.
I learn so much from the site here. I try to maintain a positive attitude, because I know how important it is, to stay positive. I have read so many accounts here, where the cancer comes back. I hope to be prepared if it does.
I had been miss diagnosed for eight months prior to getting a diagnosis of fourth stage metastatic. It was only because I pressed, and pressed, and pressed one of the doctors, to have a CT scan, my cancer was found at all.
I had also had recent and constant wrist screens and Bruce scans (ultrasounds) as well. These sometimes showed suspicious, but non-threatening activity. There is truly something wrong with the system. I found it frightening.
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