Feb 17, 2020 08:48PM - edited Feb 18, 2020 04:07AM by AnnC2019
I was never offered this test. Is this something most oncologists do?
Meet others concerned about developing a recurrence or metastases.
Posted on: Feb 17, 2020 07:52PM - edited Feb 17, 2020 07:52PM by laastra
Hello! I am 33 and now a little over 3 years past my mastectomy to treat stage 1 IDC breast cancer. My tumor was about 1.9 cm with a 1 mm branching off, no node involvement. My oncologist has been taking my CA 15-3 tumor markers at each blood test. I have gone for follow up visits every 3 months and we do a blood test including CBC and a CA 15-3. Each visit for me the level has been around 15-18, but at this recent visit at the beginning of February the CA 15-3 amount went up to 40. On this visit it had been 4 months since my last one.
Has anyone had any experience with tumor markers fluctuating? Does your doctor do these tests? I know that changes in markers don't necessarily mean breast cancer metastasis, from what I've read it looks like it can be due to other benign conditions, or even other malignant conditions. I'm just concerned because of the sharp rise in the markers since the last visit. They are going to test me again in 6 weeks, which is going to feel like a long time. I just wanted to get feedback on your experiences with this tumor marker if you get regular blood tests. Has anyone had their markers go up and then back down? I have been having these little pain shocks from my lower ribs up into my shoulder lately on the mastectomy side so that makes me worry even more. I think I need to see a counselor for anxiety, at least. Any input you all have would be great!
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Feb 17, 2020 08:48PM - edited Feb 18, 2020 04:07AM by AnnC2019
I was never offered this test. Is this something most oncologists do?
Feb 17, 2020 10:38PM - edited Feb 17, 2020 10:39PM by Beesie
Ah, I'm sorry about this. How stressful! With a Stage IA cancer I'm really surprised your MO is doing tumor markers every 3 months.
My MO does not do tumor markers for early stage patients. This is consistent with the NCCN Treatments Guidelines and most recommendations with regard to tumor marker testing.
Here is a thread from this discussion board where CA 15-3 is discussed. https://community.breastcancer.org/forum/105/topics/758735?page=1 While some people whose markers increased were diagnosed with mets, most were not. Fluctuations appear to be pretty common.
And here are some articles that discuss whether to use CA 15-3 and reliability.
"ASCO recommends that the following tests and imaging tests are not used to watch for a recurrence when a person has no signs or symptoms that the breast cancer has returned:
These tests often lead to over-treatment and wrong diagnoses, including increased anxiety, which significantly harm a person's quality of life. Regular physical exams and mammography are recommended to find a breast cancer recurrence."
"Our study suggests that a patient's history, physical, and symptom-dictated imaging should be the main way to screen for relapse in stage I-III breast cancer. Based on the higher incidence of relapse in patients with both an elevated CA and symptoms of nausea, myalgia, or axial bone pain, we conclude that serum CA levels may be used as an adjunctive test in symptomatic patients. Our data also suggests that elevated CA levels may be less useful in detecting relapse in patients with BMI ≥ 25."
I hope this turns out to be a false alarm. And if it is, you can ask why you are having tumor markers done so frequently and decide whether to continue.
Feb 17, 2020 11:52PM laastra wrote:
Thank you Beesie!! I think I just never questioned that this was something I would do for follow-up (until now) My oncologist is an older gentleman who has been in practice for a long time, he saw my mother through the 10 years following her breast cancer surgery and treatment. My mom wanted me to see him too, but I wonder if he is falling back on what he is used to doing and hasn't kept up with recommendations, or if he has other reasons. Either way, I have mostly not thought twice about it until now that they've gone up. He had just recommended changing over to 6 month follow ups instead of 3 because I have otherwise been cruising along just fine with no major changes seen in bloodwork. But now they're checking this amount again just to be safe in 6 weeks. I have had some vague symptoms but wonder if the way I perceive them is exaggerated because of the anxiety. It's hard to know. Thank you for all the information and well wishes, I really appreciate it :) I'm gonna try to keep my mind off it!
Feb 18, 2020 03:43AM LaughingGull wrote:
Agreed with prior posters...I consulted with three different oncologists during my cancer journey so far, two of them at top cancer centers, and they were clear that the recommended practice is absolutely no cancer markers -except for metastatic patients. They just don't know what to do with them.
Feb 18, 2020 02:21PM laastra wrote:
Thank you both! I am definitely going to bring this up with my oncologist. It really has been nothing but anxiety with these tests, and I also still see my surgeon and get breast ultrasounds. That should really be enough! Glad I checked in here because I had been thinking this was just standard.
Mar 28, 2020 12:51PM - edited Mar 28, 2020 12:57PM by laastra
well they retested my CA 15-3 and it is now 135. It went from 40 to 135 in 6 weeks. Before this it had been steadily around like 18 for 3 years now. They called me yesterday to say it went up and they want to do scans but I was surprised at the 135 number. They have now ordered a bone scan and a CT scan. I am feeling sort of numb and sad. I have been having weird pain in my left side. It comes on suddenly and when I breathe in it expands and gets worse, but then it goes away.
I don't feel good about this. I don't know how likely it is that it would be a benign condition if it rose so sharply. I am relieved somewhat to be getting a scan so I can just find out what is going on. I would rather just know than wonder about the weird pains im having until it gets worse and worse.
I'm 33 and I am just going over the worst in my mind in terms of telling my family if something is going on.
Mar 28, 2020 04:54PM Sunshine99 wrote:
laastra, this in an interesting topic. My first oncologist (now retired) didn't think tumor markers were significant. I think I had one blood test where they checked and mine were in the low end of normal. That was during my first cancer.
My new PCP (first one also retired) ordered checked the markers when I found a lump in my armpit on the same side as my previous cancer 12 years ago. The numbers came back higher than before but still within the normal ranges. Interestingly, my calcium number was just above the normal range, but my PCP wasn't too worried about that or the tumor marker numbers.
When I saw my new oncologist she said the numbers didn't mean anything but she ordered a CT and full body bone scan. Those will happen next week, but in the meantime my biopsy on the armpit came back as positive for cancer. I don't know yet the staging or the receptor status.
Bottom line, is that two oncologists have told me that tumor markers aren't "reliable". I understand your concern with such a jump in your numbers. The bone scan and CT scan should give you some answers. Waiting is the hard part right now, isn't it? I, too, am holding off telling my family anything until I have more information and a plan in place.
I truly wish you the best and that you get your tests and results soon.
Mar 28, 2020 06:30PM laastra wrote:
Hi, thank you for replying. I hesitate to post about this because I know everything with the tumor markers can be misleading. But I am having the anxiety and had to put it out there somewhere. It was really unexpected for me that it would rise so sharply. I have an older oncologist who also treated my mother for breast cancer. I had an Oncotype score of 16, so it was not recommended that I do chemo. My treatment was just a unilateral mastectomy of the left breast and then Tamoxifen since then, but I've been getting ultrasounds of the right breast regularly and everything has been ok. The thing I worried about was that I had IDC-L and it was multi-focal with one branching bit off the main tumor so I didn't know if that might affect how likely it was to come back.
I'm sorry to hear that you've had a recurrence in your armpit. I'm hoping for the best for you with your scans coming up. The waiting is really the hard part. I am having a hard time distracting myself, and with everything else going on in the world things really seem to be thrown in to uncertainty. I am trying to come back to my hobbies and stop obsessing on this, but it is hard while I still don't know. Let me know how your tests go, and thank you for your well wishes. I have to just wait now for them to call me to schedule the tests and I hope it isn't going to be too far out but who knows right now.
Apr 3, 2020 05:27PM KBeee wrote:
This must be very stressful. Sorry you're dealing with this. When are your scans? Hoping they are clear!
Apr 3, 2020 05:54PM - edited Apr 17, 2020 12:42PM by laastra
How did you know I was stressing about it right this minute? Haha, thank you so much for reaching out and replying I really appreciate it. :)
I actually just had the scans this past Wednesday. (April Fool's Day and I do wish this was all a big joke)
I had a CT scan and bone scan. They posted the results on my chart the next day. I really have a terrible feeling about everything I read in the results. Everything just looks the worst. Multiple mentions of "suspicious for metastasis." And what's more is I don't even think it's a very manageable type of "bad" if it is what it looks like. "There are bilateral multiple pleural-based areas of nodularity without a pleural effusion. The findings are suspicious for pleural metastatic disease" So if it involves the lungs, not only is that a bad prognosis apparently but to have a lung problem right now I am terrified with the virus going around. It's a terrible time to go through treatment if I need to start that soon. I feel like if I get Covid-19 I'm just out of luck. And my fiance does not know if he can work from home, luckily I can. But him going out will put me at risk. My hope is just dwindling down to nothing. There were also mentions of uptake in one vertebrae and in my right hip bone. And "internal mammary lymph nodes" are suspicious. And the tumor markers were 135. I know that can be because of inflammation, but it could just be inflammation that is due to cancer and everything seems to point to that.
I really can't believe it. I feel like..was this there all along? Could it have gotten this way in 3 years? Could this be something else entirely? Another cancer or another condition? I definitely need to hear my oncologist's opinion. I assume after this they can figure out more about it? Like whether it is the same breast cancer or maybe something that became more aggressive? Or a different type of cancer? Or even a benign lung condition? I only smoked for like 1 year and not much. I hate that it looks like the lungs right now is what has the most problems. I was trying to prepare myself mentally for possible metastasis but I was hoping for at least the better outlook side of that. Maybe the pleural nodules are something else?
I really want to try to start to look to the positive possibilities but it's difficult for now.
I am now in the spot of waiting for my oncologist to call back to tell me more about what is going on and what the next steps are. They said he would either call yesterday or today but I think I might check in if too much time passes today. Things are probably just crazy right now and all out of whack in really any doctor's office. It's just a bad time all around for this. Thanks for checking in KBeee :)
Apr 3, 2020 10:15PM Sunshine99 wrote:
laastra, I'm so sorry about these results. I hope you hear back from your oncologist soon! We all say it, but waiting can be SO hard.
Hugs to you...
Apr 4, 2020 03:40PM laastra wrote:
I ended up calling my doctor's office because my mom was asking about everything. I feel bad calling because I know they're busy right now and everything is in flux with the virus going on. I know they're trying to get everything in order so they have the right things to tell me and it's only been 2 days. But I wanted to know at least something before the weekend. Anyway I shouldn't worry about that. My oncologist is very popular in this area. He is a great oncologist but the downfall is that he has a lot of patients and is usually very busy. I don't know if I should try to get a second opinion at some point just for the sake of it. I just don't like to feel rushed.
He said right now he is talking to someone trying to figure out a good place to get a biopsy and that will be my next step. I don't know how they can get a biopsy in the pleura.. I am going to read about that.
Apr 8, 2020 10:39PM Imagine wrote:
I had multiple plural nodes. I had to wait 8 months after tumor marker went up to 32-65 for 1 node to get large enough for CT scan to suspect mets. I was 12 years out from original DX. I did Chemo, lumpectomy and radiation along with Tamoxifen, then switched to AI for a total of 8 years on meds. I was going to Oncologist every 6 months for rechecks. My biopsy for the plural nodes was called VATS, which is basically going in and deflated the lung and taking samples, it was not an easy surgery and I was in the hospital for 3 days. I would go for the bone biopsy, I never had one but it sounds better than thorastic surgery. Good Luck to you and hope you get your answer soon. I am currently on Ibrance and Falsodex. By the way I think we are neighbors you live in Norfolk and I’m in Va Beach! Karen
Apr 9, 2020 07:41PM laastra wrote:
Oh wow Virginia Beach! That's where I grew up actually! Thanks for replying neighbor! :) Yeah my tumor markers went up pretty sharply in a short amount of time and in between when they measured them (6 week time frame from the first rise) is when I started having symptoms. So I was thinking with or without the tumor markers in my case we would have likely had the scans. It does look like we have a pretty similar situation, what with the pleural nodules. I don't have a lot of information on how they are approaching my pleural involvement yet. Just had the bone biopsy today so now I will just wait to see where that puts me.
Hope you're doing well and that your current treatment is going smoothly as it can :)
Apr 16, 2020 04:45PM laastra wrote:
Well the biopsy of my hip bone came back and it is a recurrence of my original breast cancer. It is still the exact same ER+PR+HER2- Grade 2. My oncologist seemed just as shocked as I was but explained that this spread must have been there to some degree all along, and it was being kept under control by the Tamoxifen, but some cells may have become resistant to Tamoxifen, allowing the spread. I had Oncotype score 13 so it was determined that chemo would not have affected the chances of recurrence that much. So I was just on the bad side of the probability. Trying to take it a day at a time..but i'm hanging on an emotional thread tipping one way and another. I have to now get a PET/CT and he wants to get a brain MRI because I have had worsening headaches..just to rule anything out there. And he went over my next steps for treatment. Have to get a shot next to shut my ovaries down. I don't know how to feel it's all just a lot.
Apr 17, 2020 12:50AM sbelizabeth wrote:
Laastra, what crapalactic news. I'm so sorry. I really have no words of wisdom for you, but I know you're stunned and sad. Sending gentle hugs. SB
Apr 17, 2020 01:22AM laastra wrote:
Thank you for the hugs. It is crapalactic news! haha nice description. Stunned and sad, yes. I just don't even know. Thank you for your kindness. <3
Apr 17, 2020 05:22AM AliceBastable wrote:
Oh, my! How shocking and scary - definitely for you, but also for the rest of us complacent stage 1 people. It sounds like your MO is really on top of things, so I hope it can be controlled fairly easily (relatively speaking). Good thoughts being sent in your direction.
Apr 17, 2020 12:39PM laastra wrote:
hi! Yeah I wanted to reach out for support but I didn't want to unnecessarily scare anyone. I think my case is really uncommon. I was in a very small percent chance of recurrence. My doctor even said it was "bad luck"...great, lol. The majority of stage 1 people with no lymph node involvement/hormone+/low oncotype will not have a recurrence. And they would have found mine I think with or without the tumor markers test because I started having breathing symptoms right around the same time the tumor markers number went up. Otherwise the blood tests can just cause anxiety and I think there's studies where testing early stage people didn't lead to better outcomes. The good approach is I think is just take the hormone therapy or whatever else you have and do what's healthy for yourself every day.
Apr 18, 2020 04:01AM AliceBastable wrote:
I'm sorry you're in the lousy percentage. For me, I figure I'll get another type of cancer eventually since I seem to collect them 😀. But vigilance is a good thing for all of us.
Apr 19, 2020 01:10AM edwards750 wrote:Don’t worry you can’t scare us anymore than we already are. I am so sorry you are dealing with the C word again. I was Stage 1b in 2011.
Apr 19, 2020 03:25PM wallycat wrote:
I'm so sorry you are dealing with this. Like a gut punch, no doubt.
I don't recall when the Taylorx studies came out but at your age, even with an onco score as low as yours, they were saying chemo is suggested. But we know cancer is an "effing" crap shoot and there's just no rhyme or reason why things happen as they do.
My heart goes out to you. My DH has metastatic prostate cancer and he is riddled with it in his bones...it will be one year in June/july from dx and treatment. He looks and acts amazingly; no pain. Best to you.
Apr 19, 2020 03:39PM laastra wrote:
AliceBastable - I'm thinking of you and hoping everything goes well for you. Things do feel so unpredictable.
edwards750 - You're right. I obsessed in these forums before all this happened because I was nervous about the chance of recurrence but I don't think it did me any good, but I felt like I couldn't help it. I had a lot of anxiety anyway before anything with cancer but this has brought it out in more ways and in different ways. I justified it that I was preparing for possibilities or just learning but now that things have happened I find myself more often wanting to avoid looking at this stuff and just do the normal stuff of my life. At the same time, it helps to learn just the facts about what I'm dealing with now.
wallycat - I am hoping I can get to the point where the disease is receding as soon as I can. I'm glad to hear your husband is responding well to the treatment :) I have started my first step of treatment already (Zoladex, and next thing will be Faslodex/Ibrance). I had asked about the chemo and he said it would have affected the probability only by a very small sliver. But can't help thinking it would have been a good idea still.
May 4, 2020 09:22PM KBeee wrote:
Just catching up on posts. I am so very sorry you are dealing with this. Uuugh. ((((HUGS)))). Hoping that you are tolerating the meds well adn that they knock this cancer back for a very, very long time.
May 5, 2020 10:09PM laastra wrote:
Thank you..*HUGS* so far not many side effects so that's good. :)
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