I live in Humboldt County, Ca., which is far northern area - almost Oregon. Our Medical Community lacks continuity in care, especially Oncology. I’ve “seen” 8 different doctors in the 3 1/2 years of diagnosis. I say “seen” because some appointments have only been phone calls. Doctors come and leave, some are only part time and live elsewhere. I was diagnosed with Invasive Lobular in right breast in 2020, subsequently had lumpectomy and then 5 1/2 weeks of radiation. I’ve been on Anastrazole since.
My diagnostic mammograms have been clear. The last one was in July. However, three weeks ago, just before my appointment with yet another oncologist, my CA 27.29 came back at 59. The year before it was 19. I’ve only had those two, none earlier than that. In fact, I didn’t even know what that test was for!
Now I’m concerned that the cancer has metastasized. I requested a PET Scan and that last oncologist agreed. It may take weeks to get it scheduled, but I’m going to start calling to see if it can be sooner.
Anyone have the experience where the mammogram said no evidence of disease, but CA blood test came back high? And is a jump from 19 to 59 concerning?
Thank You,
RedwoodLady
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RedwoodLady
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Tumour markers can rise for reasons other than breast cancer. They aren’t reliable and one number means nothing. I’ve only had CA 15.3 taken once and it was 19 which is well under the normal number which is 35. The only way to diagnose progression is with a scan.
Even if the tumour marker test is reliable in your case it’s all about the degree of change so if you get three tests with more than 30% increase each time you might have a problem. But you probably don’t. Lots of doctors don’t take marker tests because it’s not a reliable test for breast cancer.
If you fear progression you could ask for a CT scan or a bone scan to check it out but without symptoms you may not get far with a request for a scan.
I agree with Kerryd22. Many oncs don't even use tumor markers, like the Ca27-29 because they can be effected by things other than cancer, and they can make us nervous, scared, worried over nothing. How we feel is the most reliable indicator, with scans second, and tumor markers a very very very distant third.
My family lived in Mendocino County for about 4 years in the 1950s--so beautiful! And my brother lives in North Bend, Oregan, also beautiful. It might be worth it for you to ask the onc you see next about going to SF, Sacramento or Stanford to see a bc specialist onc at one of those Comprehensive Cancer Centers for a second opinion. CCCs are the top tier of cancer centers in the US.
I was diagnosed with metastatic lobular bc 19 years and 7 months ago, with "extensive" bone mets. I've done really well, though the cancer cells became triple negative after being E+ until earlier this year. Some of us do well for years!
Thinking of the beauty of the forests in NCal has put a smile on my face!
I don't know what your situation is, but it might be worth it for you to move closer to a CCC, though probably more expensive.
Such a nice message to wake up to this morning. I have been referred to Stanford by my primary care doc, who is wonderful. This morning, I’m going to call our local imaging center and check on the PET Scan request. Then I’ll know more. Thank you for your input.
Totally agree you should get a 2nd opinion at CCC facility. I live in Stockton, Ca and rec’d my 2nd opinion from Stanford. Even though it is a drive best decision I made, had my lumpectomy there, discussed my treatment with an oncologist there and he consulted with a oncologist here in Stockton and I rec’d my chemo here. 7 years in remission and still go to Stanford for my mammograms. CCC facilities give you the best options how to treat and normally have the best knowledge of newest treatments. I wish you luck for the best results from your PET
It sure means alot to have a good primary care doc! I like mine, too, but she's only working part time now (she's in her 70s!) and our very small town has no full time pc docs. I hope you can get a PET soon, and an appt at Stanford soon, too. Please keep us posted!
I had a “perfect” mammogram a month before my MBC diagnosis. The cancer was not in my breasts. It was in my bones. Mammograms can’t diagnose breast cancer that has spread to other parts of your body.
I even told the technologist I was having very bad pain in my sternum and they weren’t concerned. 🤷🏻♀️
I agree with other comments that it’s worth the drive to get checked out at UCSF or Stanford, both have top-tier expertise. Even hoping and assuming that you have no recurrence now, it may be reassuring to have that relationship set up for long term monitoring.
Agree LDR1! I had to make the decision early on (almost 3 years ago) to make a change and drive 6 hours RT to Duke every month for my bloodwork and Fulvestrant shots and now semi annual scans to receive better care. I live in a small town on the NC coast and had a bad experience with the one Cancer Center 45 mins away. Having the peace of mind that you are getting the best care is priceless!
Unfortunately ,my mammograms found nothing(I had one every six months because my sister died of breast cancer) .Then in 2016 I had to have a double mastectomy due to wide spread in both breasts.I was on Anastrozole for two years but then the cancer metastisized to liver and bones😩 I was never offered a PET
Inflammation can drive CA27/29 numbers which is why many that use this blood work look for trends. Regrading ILC mine was not picked up on mammograms (ILC ER/PR+ HER 2-).
My doctor has only scanned with CT - she indicated the PETs can sometimes lead down rabbet holes (for ER+ patients). However she does utilize FES Pet scans which measure estrogen uptake. These scans are somewhat new and not available everywhere. It is her choice for lobular because lobular seems to sometimes hide from other scans.
I’ve got lobular as well and my tumor marker was steadily rising which my onc dismissed as nothing. I knew something was going wrong. Sure enough, it had moved to my stomach lining. My oncologist still did nothing after I lost a lot of weight and was vomiting everything I tried to eat. Finally my primary doctor ordered an endoscopy thinking I had an ulcer. Stomach lining was riddled with tumors. Started on Ibrance and Tamoxifen and 2 months later endoscopy was clear. Be your own advocate and force them to test you if you have to. They don’t know everything. You may need to get to Portland or somewhere else for better care. People do travel distances for decent care. Not a fun experience, but it’s your health. Good luck. Lobular can be tricky.
Totally reasonable to get a PET to follow up on rising tumor markers. For me, tumor markers are an early warning sign of progression. Last blood test showed two normal and one slightly high, around 59. Followed up with a PET/CT and it showed two small tumors and one active lymph node, so I am changing Rx.
I am so sorry you are going through this. I was originally diagnosed with invasive lobular cancer in 2013 and had a mastectomy and then treated with anastrozole. My CA27-29 tumor marker was checked every 6 months. In September of 2020 it had risen from somewhere in the 30's to 54. My doctor was suspicious something was going on even though I had a normal mammogram as that had never happened before. I was not in any pain and had no other symptoms. I know the markers can mean something other than cancer, however she was cautious and had me go for scans and a bone biopsy and was found to have MBC. She said we caught it very early and I feel that the tumor marker's increase did mean something. Since then my markers have fluctuated by a few points up or down when I have it tested every 3 months. The doctor said small fluctuations are normal and they look for numbers trending upward each time. A PET scan will give your doctor the information she needs. I am hoping that it is just an anomaly and does not mean anything serious. Sending hugs and prayers.
Just adding to the sage advice of others here, but get on the radar of a in network major cancer facility you can stand to travel to periodically. Once the intake is done, you have them follow you throughout and use as a 3rd party to help navigate your treatment. Keep your local oncologist, but bounce ideas off ‘Team RedwoodLady’ and confer with them through email portals and telehealth,
Cancer is sneaky. Don’t rely on 1 source or medical opinion to chart your course. Even if your bloodwork is falsely elevated due to other reasons you are wise to question and take proactive steps.
Yup! Doing just that. I have now actually been referred to Stanford and will be seen there soon. Gathering up all the info and images on me as we speak. Thanks.
First from your "name" I figured you were somewhere near the redwoods. I am from Southern Oregon 30 minutes from the border on I-5.Back to the cancer. None of mammograms showed any cancer. When my fractured ribs appeared, they knew something was going on. It sure ruined my golf game. After about 3 months of tests, they finally decided to do a bone marrow biopsy on my tush. And there was my cancer in my bones at Stage 4 at initial diagnosis in Dec 2015. What a shock. My CA 27 -29 was at 131. With letrozole I dropped into the normal range. Now about 10 drugs and chemo later I am on Orserdu. My CA marker has been changed to CA 15-3. I am now back in the normal range .
I wish you the best on your tests and finding an oncologist who will be there for you. We are blessed to have a great cancer center here. I have been lucky to have had the same oncologist starting with day 1.
Our practitioners travel over to Grants Pass every week. I know it would be a drive for you but would that work?
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