Hallo @janxie.
Thank you for posting. Can I ask what level your ALP was? I have had rising ALP levels, the most recent blood test shows it is now 207! My oncologist has finally referred me for an ultrasound scan (a recent CT scan didn’t show any signs of liver cancer) but it is concerning……
100 percent agree. I picked up shingles which had not been spotted by the onco nurses. I’d also initally visited my gp when I noticed a mottled mark on my breast - she told me to “keep an eye on it’ but I pushed for a referral to the breast clinic. This was because when I googled it said always go to the gp if you notice a change. Also a fan of Liz O’Riordan.
Hi Fran
Mine was 180 in January. I honestly do not know whether doctors and oncologists have any interest in ALP, yet Dr Google says it can be an indicator of osteoporosis. I think there are other tests that say whether it is bone or liver (e.g. ALT), and so I did a private blood test and for me the liver enzymes were normal. I don’t know if you are taking D3/K2/calcium but I have found a slight reduction down to 160 since I have been taking these, even though I am also on Anastrozole. Really good luck with your scans and I hope it all goes well for you. x
I am so sorry, Janxie. I was told by my oncologist that it can rise for so many different things and that at least at my hospital they weren’t concerned about it until it was two times the upper limit. And I got what they were saying but it never sat comfortably with me because I wanted an explanation for it. I read and read until I thought I might have the explanation and then pushed for zolodrenic acid infusions. I thought it couldn’t hurt either way because I was slight of bone so was at risk for osteoporosis anyway and to top it off the infusion was a cancer preventative. And it seems to have worked for me and I’m happy about it. My new blood work though is at the end of the month so we’ll look at it again then. But for you, can you ask for zolodrenic acid infusions to help with osteoporosis? It can still make a difference from what I’ve read. Sure they’re side effects with it but they’re rare and the medication is normally tolerated very well. I have no discernible issues with it myself.
I would say everyone is different and I find it sad that consultants do not gauge their approach depending on the individual in front of them. I am a researcher myself (albeit in a completely different field) and I broadly understand how to evaluate various information sources. I could never understand why my consultant was so reluctant to send me any papers or clinical studies and instead had to Google them myself. I’ve got TNBC and sometimes it is daunting to read them (researchers like to point out that this type is not that great) but I personally feel that having a better understanding of what is happening and why I should do certain things gives me a lot of comfort. I want to understand the decision making and what impacts certain decisions. If you are like me, then googling in PubMed or Google Scholar does help. I guess consultants are just scared I would forgo chemotherapy and believe in some magic because I’ve found it on Google.
I agree. I used to research for a living, but found that none of the doctors cut to the chase in our visits. My MO is positive and uplifting, but I spent 2 months thinking I could get a lumpectomy when I really couldn’t. I went around for a bit thinking I could get implants only to find out that since I had a previously radiated breast the odds of failure were high. I’m in the US so I had to doctor shop. For whatever reason, my MO and previous breast surgeon weren’t giving me names of people they preferred. That in itself was exhausting. After time I finally picked a breast surgeon and a plastic surgeon, but the process was exhausting. There is a balance in letting the patient know their options, but in my case I suppose there was a reason I had to figure these things out for myself.
How interesting. I was quite lucky and the doctors were fairly clear on my options but I sometimes needed more information to understand why they recommended certain things and it made them nervous and frustrated. My plastic surgeon was telling me that I MUST do a two stage procedure if I go for implants. After quite a bit of cross-examination it transpired that it was merely his personal preference and other doctors did it in one stage. When he explained WHY he personally preferred the two stage approach, I could get on board and decided to go for it. I was much more comfortable to make this decision myself based on some additional information provided
It sounds like you definitely had a smoother process. When I was younger, I used to question everything when it came to doctors or dentists or repair people for that matter. I recall scaring away a dentist or two because they couldn’t answer my questions properly. This was back before Dr. Google had as much information as it does now. During my first round of cancer it seemed like things were pretty straight forward in relation to my surgery. The chemo required a 2nd opinion and my choice to not do TAC, but only TC. I’m happy about that one in retrospect since ER+ really requires the hormonal suppression (not as well documented at that time).
I do a lot of my research first and then try to listen to what the doctors have to say. If they confirm what I’ve looked into then I am gold. However, I do wish someone would have made the direct-to-implant idea clear to me earlier. I think my 2nd opinion surgeon may have said something, but she had the worst personality, then in the end my 3rd opinion person made it a tad more clear. Regardless, exhausting.