Cancer markers going up sharply, but PET scans showing NED

[Fiercefighter13]

Anyone with metastatic breast cancer have or had breast cancer tumor markers go up, with clean PET scans?

[Hidden]

Mine did go up a bit, but latest CT shows lymph nodes are calcified and under 10mm and according to my oncologist are therefore non-cancerous. Bones are still questionable, but no growth or new tumors. Cancer cell die-off can also increase markers. I like to think that's what it is.Anja

[Fiercefighter13 in reply to Hidden]

My PETs keep coming back clean, but my markers have been steadily increasing over the last year, with two big jumps in the last 3 months. Getting a PET early (usually I have them every six months), this time I'm getting the scan at 4 months. It's always nerve wrecking. Thanks for the reply, good thoughts!! Cells dying, sounds good to me!!

[Hidden]

I have read that markers can go up during die off of cells... but that the msrkers do not always correlate with size of tumors.

[Fiercefighter13]

Thank you all for your thoughts!! Makes me feel better to think of cells dying off as well. Hoping and praying for all of us!!

[Thrifty51]

Hello Fiercefighter,

I had a similar situation over the past year. My markers climbed from around 50 to 750 over a 10 month span. I had 3 pet/ct scans every during that time that showed NED. It was on the 4th one 10 months later that mets showed up in the peritoneal area. Prior to this finding my mets had only been in my bones. My meds were changed from Kisqali and Letrozole to Xeloda. I've been doing well on Xeloda for almost a year now.

I hope this is not the case for you but it is better to be forewarned.

I wish you the very best.

Audrey

[Fiercefighter13 in reply to Thrifty51]

Hi Thrifty 51, thank you so much for your response. I dug in and did more reading and researching after seeing our post. If it's o.k., I have a couple of questions for you. Did you have any physical symptoms with the peritoneal spread? How are you doing on Xeloda? I'm grateful for any information you can share with me!

[Thrifty51 in reply to Fiercefighter13]

I had no physical symptoms with the peritoneal spread and I did have a biopsy to verify that it was the same type of bc in my bones. I had to reduce the xeloda over a period of time because of stomach issues. I started at 4000mg per day and I now take 1500 mg per day with weekends off. I have not had problems with the hands nor feet.

[Pachira]

I smiled when I read your post as I was thinking of asking the exact same question. I had my visit with the oncologist Tuesday to discuss the results of my CT scan 2 weeks ago. He told me he found that my tumor markers had been steadily rising for the last 2 years and they’re now at 186 to be concerning. He said the scans I’ve had Pet plus Ct over that time have not found any cancer but he suspects it to be somewhere. He did agree that I would stop the 3 month injection of Xgeva as it has probably caused uveitis and I’ve lost sight in my left Thankfully they discovered it in time in my right eye. I expressed concern to my Onc about the rebound effect from stopping denonusab but he says it’s rare. I have wondered if the inflammation is causing the tms to rise but my inflammation was reduced and my tms went from 156 to 186. I’ve been 5 years on Arimidex and Xgeva so I just don’t know. I said to my Onc that not all Doctors test for tms (I’m sure I read that here) but he said that they only don’t test when it’s stage 1-3. What was the number of your markers? I’m presuming it’s the Ca 15-3 and I do feel that a rise is indicating that the treatment isn’t working but in my case the cancer has not materialized. I go back in January to check blood work then ge said we'll talk about another scan. Still 3 more months and I’ll live to die another day Lol

[Fiercefighter13 in reply to Pachira]

Hi there! My markers have gone from 186 before I started treatment, to down to 70 on Ibrance/Letrozole/Xgeva treatment two years ago. Last year they started creeping up, 76, then 79, 90’s then 3 months ago they jumped to 132 stayed steady for two months then last Friday jumped to 168. I’m worried about spread to stomach or peritoneum. I’ve read peritoneal spread has very poor outcomes. I’m scared. Thank you for sharing your brave journey, prayers for all of us, cancer sucks!

[Pachira in reply to Fiercefighter13]

So after reading about the possibility that the rise was from dead cells I found this article. It seems that our body needs to sweep out the dead cells otherwise it causes inflammation and that can lead to active cancer as our immune system is trying to suppress it. Basically the recommendation is to eat Salmon herring sardines for the reservatrol That was my short take and that coincides with the Mediterranean diet. I understand you worrying about peritoneal but have you had symptoms? I really think the worrying about where it’s going to land makes it harder for us. Stress is known to be a factor and it seems many people are doing better that are able to meditate. I’m trying to eat more greens in smoothies. Nuts and seeds but I know I need to add more fish. Im older 72 next month so I hope to see my son retire from the military in 3 years and the grandkids mature. Try and enjoy every day, exercise and eat well. Love a couple of glasses of red wine. Check out Canceractive site with Chris Woolams, he is awesome! Here is the article I ploughed through rupress.org/jem/article/215...

Chris

[Fiercefighter13 in reply to Pachira]

That is quite a study in this journal! I read through it, and yes I have to agree, an anti-inflammatory diet is essential. I do follow a Mediterranean diet, I'm strict with my foods, I do eat a lot of fish (salmon, herring in particular), and mostly my diet is comprised of organic veggies. I avoid dairy and sugars, and foods that I don't make myself, so no junk food. As always, with cancer it's a wait and see thing, and always a worry. I think stress and worry are my Achilles's heal. I do see a therapist to help me with my cancer mindfulness....but it's hard. I'm only 57, first diagnosed with stage 1 - 0 at the age of 47. I want to see my grand babies grow up a bit, they are still so young, and I worry about my dogs (which I know in my heart my family will take care of), but still, always a worry. Thank you for sharing this article, it was very insightful!!

[Pachira in reply to Fiercefighter13]

Sorry that should have read Resolvins and also just saw you had lobular. Did someone say an MRI would pick up problems in the stomach?

[Nocillo]

Yes! Markers were steadily increasing for months which I kept bringing up to my doc and she said they’re not reliable. I didn’t have pet scans but CT and bone scans instead. All looked clear. Then I started vomiting for weeks and still no action until my primary doc thought I had an ulcer. Cancer had moved to my stomach which is not visible on CT. I was angry! Please have them check something that is not easily seen on s scan. I have 2 types of breast cancer and it’s the lobular that went to my stomach. Good luck!

[Fiercefighter13 in reply to Nocillo]

I have lobular carcinoma, and what I have read is that 70 percent of lobular cases go to the peritoneum, stomach, ovaries, uterus and colon. Peritoneal spread is almost impossible to detect until the spread is profuse and has very poor outcomes. I’m very worried. I get PET/CT’s which should show uptake changes as well as anatomical changes, but lobular is hard to read on any scan because it does not form clusters or tumors like other cancers, but spreads in flat lines instead. I hope you are feeling better, are you on a new treatment that is working for you? Best wishes and prayers for you. I hope you have been able to turn things around with a new treatment.

[Nocillo in reply to Fiercefighter13]

Yes. I am now on Ibrance and Tomoxifen. I was on Arimidex and fulvestrant for 6 years. I started Ibrance in April, I think. So many dates to keep track of!

[13plus]

I always had bone lesions in my scans and there was minimal progression that doc wasn’t too concerned about. My TM were also slowly rising over many months. I started to have different symptoms over a couple of months , like odd occasional stab, a few tingles at times, and TM started jumping at a higher rate over that time. The PET was still much the same. An MRI taken a coupleIf months later to look at something else showed brand new lesions so I switched from IBrance to Lynparza and doing well. Symptoms have disappeared again and TM going down in jumps so, for me, the TM have correlated to activity. Try not to freak out though. Keep an open mind and just stay vigilant (calmly! Lol) . Do ask doc for a different scan though if you feel uneasy about your results . Good luck with the scans coming up

[Gmaoftriplets]

My oncologist only does PET/CT scans she does not do tumor markers, the only time I had tumor markers checked was at initial diagnosis almost 5 years ago. I still have my breast tumor which had grown and now is shrinking! I had one leison on my right hip at 1 inch. I'm going to ask her at my appointment next month why she dosen't check tumor markers, listening to all of you I am now concerned. I am on Ibrance 100/letrozole

[hdhonda in reply to Gmaoftriplets]

Tumor markers are not reliable on so many people. You are lucky that you are going to an oncologist that doesn't routinely check them. They just upset us for no reason. Best wishes and blessings to you. Hannah

[Gmaoftriplets in reply to hdhonda]

Thank you for your encouraging words.

[Fiercefighter13 in reply to Gmaoftriplets]

Hi there! My doctor does tumor markers because scans don’t always find peritoneal, stomach and gastro changes until they are very progressed. I have lobular which likes to go there. What kind of bc do you have? If you have ductal, that may be why your doctor doesn’t worry as much about the tumor markers? Either way, asking your doctor is good since you are your very best advocate!!

[Gmaoftriplets in reply to Fiercefighter13]

Thank you for explaining that to me I never knew that about the differences between lobular and ductal. Mine is ductal.

[Snallygaster]

Yes and it was worrisome. After 3 clear scans they finally decided I hade liver mets. I wason Piqray and now have been switched to Capecieabine. My markers have gone down some and I will do blood work tomorrow and see where I am. I have a scan scheduled in November. Hoping for the best.

[Fiercefighter13 in reply to Snallygaster]

I hope your blood test, and November's scan look good for you! It's good to know there are more than one line of treatments. Cancer is a real bugger!

[Aprilfoolz1]

I'm somewhat new to this site but like you were dx as stage 4 in 2019. ILC is sneaky as you are aware. I am on discussion groups with breast cancer.org and some Stage IV ILC members have had "clear " scans but increased tumor markers . There is some new type of petscan in trials for ILC I think ? Look on breastcancer.org and look for KBL - she is very well informed on this . Their site just went through a revision and it's a bit slow right now .

[Fiercefighter13 in reply to Aprilfoolz1]

Hi! Thank you so much for sharing this information!! I will be looking up the site this evening. Information is power, and one more place, one more person to help me be the best informed that I can is wonderful!!