tumor markers rising but scans show tumors stable/ shrinking?

[Ticket123]

Hello! So my tumor markers have been going up for the last 3 months but the last set of scans showed everything stable/shrinking. I feel well. I have lobular so I know it can be sneaky. I have been on Faslodex and Ibrance for a year. Doc doesn’t want to change med because of tumor markers. ( which I’m in agreement with). Just wondering if anyone has had this situation and what the docs did. I guess I feel like if something is brewing it will show up. and then we address it. I hope this is the right mindset !!!! Anyway thanks for any input and have a good day!!!

[Aquamoron]

Hi Ticket123. I am in a similar boat. My tumor markers are stubborn but stable at around 65. It’s like they plateaued for the last 4 months. I have liver lesions and bone mets, and have been on Ibrance 125 and Fluvestrant/Xgeva protocol for 12 months now.

My November scans show stability, even healing and reduction in lesion sizes. My genomic testing also looks good. Although I think the overall goal is to get to me back to magical tumor marker healthy threshold (what is it again? 30?35?) I’m much lower than when I started a year ago.

So my onc states that my results are stubbornly consistent - and that this is good. We discussed and are not changing anything. I’m running with that. So am thinking that my journey may just be to achieve stasis at any level, for as long as possible and that the CA marker bloodwork fluctuates (Covid booster, inflamation, random viral stuff, etc. effects the monthly reading as my immune system gets ‘distracted’). The overall picture is a good downward trend to normal levels, but it’s slow.

Hope this helps.

[Ticket123 in reply to Aquamoron]

Thanks for the reply! My doc says stable numbers are good numbers so it sounds like you are on the right track. What is Genomic testing?

[DeedaSalmon]

I was on the same meds. My CA15-3 were steadily rising through 2022. I also felt well. My oncologist at the time told me not to worry about it as imaging showed stability. I didn't like that answer, so I changed oncologists. New oncologist got me a bone scan the next day. This also showed stability in my mets as they were in various spots in bones. A subsequent PET scan finally showed a spot on my liver. It was suggested that I have RF Ablation to this spot so that I could continue with Ibrance and Faslodex. In preparation for the RF Ablation I had a CT scan and ultrasound. The ultrasound found multiple lesions in my liver. This made the RF Ablation not suitable for me. I started capcetebine in November. Along with this drug I am doing LRHT (loco regional hyperthermia) with my Naturopath. I am currently on my 3rd cycle of the combined treatments. When I started this my CA15-3 was at 2398. The first cycle I dropped by 1095, the 2nd cycle another 762. Last count was 541. A significant drop!! In my experience if your markers are rising, something is going on. The lesions in my liver did not show on all imaging. Ultrasound and MRI showed them. All imaging is not equal. Good luck in solving your mystery.

[Ticket123 in reply to DeedaSalmon]

Hello! I’m glad the Capcetebine has been working for you. What is LRHT?

[DeedaSalmon in reply to Ticket123]

Please see my reply to mariootsi.

[mariootsi in reply to DeedaSalmon]

What is Loco regional hyperthermia?

[DeedaSalmon in reply to mariootsi]

Here is a link. I am not sure where you live, but this is not covered by my medical coverage in Canada. I have to pay extra for it. I am certain it is making a difference. My oncologist is amazed at the drop in tumour markers. I am very fortunate to be able afford it.

cancer.gov/about-cancer/tre...

[mariootsi in reply to DeedaSalmon]

Thank you

[ANNIE6449 in reply to DeedaSalmon]

I was referred to the Hyperthermia Cancer Institute in Santa Monica California USA for what sounds like exactly the same treatment. They do not use that name (LRHT) but sounds VERY similar. Medicare covers the treatment as long as it is in conjunction with radiation or chemotherapy. I need to see an orthopedic oncologist about other possible treatments and just found out that my City of Hope may also use that treatment so I will not be going to the Santa Monica place for now. But this info might help someone else. (The SM Institute also helps with temporary housing for out of town patients.) I was referred there by my GP as soon as we discovered that the second round of traditional radiation did not seem to work on the bone met I have.

[13plus in reply to DeedaSalmon]

wow I’m so surprised the liver lesions didn’t show in the CT scan 😳 I used to just have bone mets, got dx with liver lesions last November. Switched treatment and they are only doing CT scans and bone scans every 3 months. The liver mets (not the bone ones) have actually still been slowly progressing but the plan is to continue for now to get the most time out of each treatment attempt. Ugh. I feel it might be time for me to switch again - my own gut feeling . I don’t want my liver beyond saving.

I have several small liver mets and now reading this I worry I have a lot more that are not showing in the CT scans

[Fiercefighter13]

I have lobular as well. I was on Ibrance/Letrozole/Xgeva for one year and then my markers started going up. My doctor did not change meds for 1 1/2 more years. PET scans, CT scans and MRI’s every three months during that 1 1/2 years while markers kept going up, all showed NED. I finally pitched a fit and demanded an endoscopy and colonoscopy. That’s when biopsies and visual showed the lobular spread all over my stomach and colon. Switched to Verzenio/Faslodex, it diid no good. Switched in a hurry to Piqray and had a major allergic reaction. Now I’m on Xeloda, just started 3 weeks ago and hoping it works. I felt great the whole time, still do, but my stomach and colon are not in good shape. Most of the time scans don’t pick up on lobular. If you haven’t had an endoscopy and colonoscopy recently you might want to consider it……that’s usually where lobular likes to go, and scans won’t show it. Wishing you the best, please be a powerful advocate for yourself since protocols for all breast cancer follow ductal protocols and lobular is s a completely different beast. Take care, and I hope your path is not the same as mine turned out to be.

[Ticket123 in reply to Fiercefighter13]

Hi Fiercefighter. This whole thing is so hard to figure out. I don’t think I will ever be NED as I already have it in my stomach, liver, and bones. I’m not sure what I am aiming for besides staying alive and living well. ( which has been going pretty well so far!). My CA15-3 jumped 30 points 2 months in a row and the other one went down a point. I haven’t had an ultrasound ever or a colonoscopy lately. I like my oncologist a lot and am at a good hospital but I wonder if there are docs that specialize in Lobular. I’m sorry that it’s been so rough for you lately. Hoping that the Xeloda does the trick for you and you continue to feel well.

[Beryl71]

Mine have been steadily rising for a year since I started the zolondronic infusion. But my scans show no change and I feel very well. I've been on ibrance and letrozole nearly three years. Mines not lobular. I have nine disease and some originally had nodules in lungs that have now largely gone. So I just get on with life . My oncologist says everything is fine but I'm moving to Scotland next week and maybe a new oncologist will see it differently! I'm not going to worry about what might happen but want to make the most of my current wellness. Good luck. X

[Ticket123 in reply to Beryl71]

I feel the same about enjoying and appreciating now. I don’t want to spend all my time looking for trouble but I also think it’s important to be on top of things. I hope your move goes well!!!

[Joannaaaa]

Hi Ticket123, it's so difficult trying to figure out what's going on and how to proceed, sometimes, but keeping a good mindset is important. I've had MRI, CT scan every 3months with good results but my markers are rising since April 2022, I've gone from under 40 up to 115, 142 and currently 165 in January 2023. I felt ok up to September, feel not as well since then but unsure if it's inflamation or the disease. I tale letrozole, ibrance and have zometa infusion once every month. meeting onc second week of February to discuss and get latest scan results. Not sure I can offer any knowledge or help, but there are lots of us in a similar situation, hopefully we'll get through without too much more to deal with. sending good wishes to you

[Ticket123 in reply to Joannaaaa]

I hope all goes well with your scans! I have discomfort in my stomach and fatigue but I can get through it pretty well. One of my biggest challenges is figuring out whether it’s from the cancer, the meds, the stress, or something else! I don’t want to spend all my time trying to figure it out but at the same time don’t want to miss something that needs to be addressed. Again good luck with scans and thanks for replying!

[Joannaaaa in reply to Ticket123]

I understand, I've tried to not stress the new aches or pains, sometimes they are stress, medication side effects or just our bodies trying to deal with everything. my tumors are along my spine so my pain is lower back pelvic area hips leg and lately arm shoulder. but I've had a lot of relief from lymph drainage massage it works wonders for my shoulder arm area wish I had tried it sooner. since December I've also had some bio energy sessions and Im feeling stronger, less bone pain and in a better head space. the pain had really taken its toll on me before Xmas so I'm hoping my scan will be ok and I'll try to improve my day to day with some extra care and more rest. thanks

[mariootsi in reply to Joannaaaa]

Hope scan results are good.

[Godbeforme]

Well, finishing up 2nd cycle of ibrance today and had to comment as my tumor markers had gone up but now the CA27-29 has come down from 424 to 389 but the CA15-3 went up a bit to 450 or something close to that. Onc said to just ignore it. It's confusing to me, but I feel pretty good other than ibrance making my blood pressure high. Doctor just added another bp med to help bring it down so we shall see. God bless you and heal us all in Jesus name, amen! <3

[Ticket123 in reply to Godbeforme]

My Doc said that they expect tumor markers to go up and down. It’s when they consistently go up is the problem. I’m glad you are feeling well!

[mariootsi in reply to Godbeforme]

Good luck with new med.

[Gardengirl345]

Same situation here! Also lobular. Bone Mets only. Dx one year ago this week. I’ve been on letrozole/ibrance/zometa. Scans show stability and even some decrease, but past few months markers have gone up—after originally going down. (Ranging from 40-55). It’s confusing. Dr says they only look for trends. As far as scans go, is anyone here using the new FES PETscan? It tracks estrogen instead of sugar like the FDG. It’s brand new and a good option for lobular cancer tracking. My cancer (lobular) wasn’t showing up on traditional pet or bone scans only on MRI — so tricky! My doctor feels really good about the scans, but why do markers rise? It is worrisome. The colonoscopy is a good idea. I wonder if there are any lobular specific groups to join. I do feel as if we are in a slightly different category. Love to all of you.

[DDIL1 in reply to Gardengirl345]

Hi Gardengirl,

I had two FES PET scans. Being lobular we have to be diligent on scans. The FES was very helpful in identifying what is active and what is not. The CT may see nodules and size them but can’t say if they are cancer, the bone scan similar. I can’t have anymore FES PETS as I developed a ESR1 mutation and on Faslodex now. Like you I was diagnosed about a year ago. Bone Mets, lymph and breast. I was on Ibrance, Letrozole and xcheva. Now I’m on Kisquali, Faslodex and xcheva. Breast tumor gone, lymph normal, bone Mets healed and just had radiation to T7,8,9,10.

I would love a weight full body MRI as I heard those are great for Lobular but insurance won’t allow that for me and I have great insurance. I also had an endoscopy to rule out any stomach Mets and I’m scheduled for a colonoscopy. I think that’s all we can do as lobular is try to be as proactive with how we feel watch our markers as mine do tell a story of change and get scanned to scoped. There are lobular Facebook sites , also there is the LBCA, breastcancer.org we have virtual meetings on Monday and Wednesday drop in is fine and there are several lobulars on there. Not sure where you live but I also catch up with other lobulars regularly by zoom to share info on treatment , scans , trials etc., we are different in our cancer but treated the same. They are trying but just not there yet. Markers can rise for so many reasons, vitamins, inflammation, infection, foods but you know when something is off and your onc needs to react. Wish you the best

[Ticket123 in reply to DDIL1]

I agree with paying attention to how we feel but I have trouble with that. I am constantly trying to figure out if symptoms are from cancer, meds, or whatever else. None of it is very consistent for me. It is stressful. I’m also very good at just trudging through not feeling perfect. On one hand I don’t want to be consumed on another hand I don’t want to miss anything. I guess that’s where the oncologist comes in.

[Tanyateresa in reply to Ticket123]

I feel the same. I've been on Trodelvy 3 months - my markers started going down and then this month they zoomed up again. Very disconcerting as I feel fine. I have bone Mets and lobular too. So difficult to know what to do. And I agree with trudging through " Not feeling perfect " And getting on as best we can. Very helpful your experience and comments🙂

[Ticket123 in reply to Gardengirl345]

I have had bone scans and CT scans. Not sure why no PET. I will ask about the new FES PET scan. I was diagnosed around a year ago also. I wonder if any docs specialize in treating lobular. I have found people that study it ( well one person). but no info on treatment. This is definitely an adventure

[OneLump22]

👋 Ticket123. I just found that I also have lobular carcinoma. Been on Ibrance & Faslodex not quite a year, but so far so good.

[Godbeforme]

well md anderson at Galveston UTMB only gave CA 27-29, CT scans and Bone scans, no CA15-3 or petscans. just throwing it out there for information only. when I went to my regular doctor the other day, she was a bit miffed why my onco hadn't ordered any scans or anything when the pet scan in november (1st one ever and no one could show me pics or explain etc. sent me home with the cd which is greek to me) pet scan showed a mass on my lung allegedly. she ordered a chest xray and lungs are clear ... NO MASS. I am beginning to think it's all done with smoke and mirrors ... good news though, clear lungs! <3 God bless and heal us all in Jesus name, amen!

[ANNIE6449]

I've been told that DYING cancer cells can also increase tumor markers - which I would think would be a good thing? Markers can also rise due to infection and other stuff going on in the body. I think this is why markers alone are not a good indication of tumor status. Just what I've heard along this journey....hope that helps!

[Ticket123 in reply to ANNIE6449]

that’s a happy thought! I’m going to go with that until the next blood test. Then I will reassess if needed.

[Dragonfly2]

My tumor markers are doing the same thing…up, down, up, up, down…it seems that the biggest swings happen after any kind of vaccinations, Covid, shingrix, flu…onc told me that markers react to immune system stimulation…sounds like a good thing. 🤷🏼‍♀️ seems that swings are normal but if there is a steady rise…well, that’s time for the Onc. Best wishes!