Hi Kay,
Just came across this and wanted to say I know exactly how you were / are feeling. Had a similar thing only yesterday where my ca 13-5 went from 20 to 26 (the blood samples were taken 6 months apart).
The limit on this particular test was 25. Both my consultant and oncologist are not concerned at all but it sent me into a manic tail spin as this is a marker for distant recurrence and now every little ache is convincing me something sinister is happening.
They are going to test my blood again in a couple of months time, so like you I am really scared because if it goes up again, I will also need a scan.
To be honest, I think I am going to call my consultant on Monday and have a discussion with him as I am so stressed over it.
We will both get through this journey one way or another and learn to deal with little hiccups along the way.
I guess we need to trust the doctors and remember your calcium was fine and so were the rest of the bloods (otherwise they would have flagged it). The oncologist mentioned to me that they always look at the whole picture not just one bit as fluctuations happen all the time.
Sending much love
Carrott
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Oh Carrott. I’m so sorry since I understand the anxiety this provokes and I would tell you to definitely call your consultant. Somehow you have to get some kind of closure here. I have decided to test myself. I’ll go Monday. We are allowed to do that in the US and the results will only go to me and not my oncologist and I like being in control of that. I have no idea what I’ll do if the results are the same or worse. I feel great physically and I know from reading that people’s bloodwork results go up and and down all the time and it truly doesn’t mean much for most of them. And when it does, it was coupled with physical symptoms. So I am trying to take comfort from that and you should, too. I will also add that CA 13-5 levels aren’t deemed that reliable which is why most oncologists now don’t run them in early breast cancer cases. It might be worth it to ask why they’re following it.
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Hi @Kay0987
Good for you taking control - hope the results have / do come back ok.
I did speak to my consultant and he’s put my mind at ease. The only reason this measurement was made is because it was part of a sweep they do before the biphosphonates infusions. I have those every 6 months (they are primarily to strengthen my bones and prevent osteoporosis).
He’s not concerned one bit and said it’s very common for them to elevate after a reconstruction that uses a mesh (I had the second reconstructive only about a month before the blood test) and usually the elevation is even higher.
He also explained that they look at the full picture because usually the signs of a recurrence are not just in one marker. He also reassured me by saying he’s seen it many times before and my case isn’t unique. Also, like you mentioned, he said it’s a really poor marker so they only really use it to assess if treatment is working for someone who has know recurrence not to identify one.
So that’s this scare out of the way for now….let’s see what wants to frighten the life out of me next lol.
Please do let me know how you get on.
Sending much love
Carrott
Well it seemed like a good idea but I came out even higher with this next time putting me for the first time at above normal for ALP. I’m glad your doctor made you feel better though. My oncologist still doesn’t feel a bone scan is necessary unless I want one (I don’t) but she did say I could zoledronic acid. Do you have side effects from them?
Please don’t panic, I know it’s very hard not to but remember you don’t have any other symptoms, rest of your bloods are fine and you are exercising lots which not only lowers your risk of recurrence by half but it also can cause changes in the ALP.
Statistically the odds of the levels being high due to harmless reasons is totally on your side. My advice is drill your oncologist as she is the best person to put your mind at ease. She can tell you how many times she’s seen this happen with others etc…
I have had zoledrenic acid twice so far (once every 6 months). The first time, I had 24 hours of feeling flu like, sick and ill. It literally started 24 hours after the infusion and lasted exactly 24 hours and then absolutely nothing afterwards.
The second time, I told the nurse how I had felt and she said she was going to do the infusion over 20 minutes instead of 10 as that sometimes help. I actually had no side effects whatsoever second time.
Don’t know if that’s because my body was more used to them or whether it was because of the 20minutes.
Also, this time round she told me to take paracetamols every 6 hours for the next 48 hours regardless or whether I needed them or not. I think that may have helped too. The whole process is so easy and painless.
Hope this helps and please keep getting support from us. It’s such a “sucky” journey, we all need each other.
Much love
Carrott
Thanks so much, Carrot, for the pointers. My oncologist wants to schedule a video call but not until December 4th. I have asked for a five minute phone call but we’ll see. At this point I just want to know if my ALP number rise could be because of losing bone mass and then I’ll research accordingly. Simple yes or no. At any rate, I asked the nurses here so maybe they can give that to me. I’m so glad to know you’re feeling better though. This journey can indeed be sucky especially when you’re in “regrouping” era. I’m so grateful for site such of these.