Best Of
Re: HIgh ALP and very concerned. Please help
Hi Rsviigs! Technically letrozole doesn't cause bone loss. It's the lack of estrogen that letrozole causes that can cause bone loss :) So, you're right. This is probably menopause. In fact, since I have made the original post I have seen numerous people talking about high ALP. None of them have had bone mets. It's been just aging bones every time. Some facts to keep you calm as you figure out with your doctor how you want to proceed is looking at your first dexa scan before you started taking letrozole. How were your bones then? Mine said I would have had osteopenia if I had been over 50. Secondly, is your calcium normal and not elevated? Bone loss caused by mets will lots of time cause elevated calcium levels. Thirdly how elevated is your ALP? If it's not two times the normal limit (for my hospital that would be above 220) then my doctor doesn't worry about it. Anyway I'm so sorry about this but I have learned that the one constant thing it seems after cancer is for everyone to jump at every little thing in our blood work. And a lot of time we have little things because we're still human and the body can be quirky occasionally. But the vast majority of the time there is nothing to worry about.
Re: I was just now dx with skin mets
@rlschaller Hi Rhonda. It is the case of the disappeared comments box over in the other group. Still not resolved.
I had a CT yesterday and completed the fourth Trodelvy cycle this morning. Will see what happens next when I see my MO next week. I'm worried that it will already be the end of Trodelvy as the skin mets just keep on coming. A familiar scenario for you! The CT results are not up yet on the patient portal. The latter is a blessing and a curse, given that you can see your results well ahead of getting the doctor's take on them.
Let's hope that Navelbine does what it's supposed to do, and treats you gently. My skin mets did not break the skin so haven't had to dry up. Thank heaven for small mercies(?).
How are you doing overall? Are you still going about daily life much as before? It's quite admirable that you are able to continue working throughout this time.
@tbos805 Hello and welcome. Wishing you all the best, especially in regard to your ongoing skin situation. I have bone mets too, one of BC's favourite tricks.
scgal08
Re: Birads 5 with calcification
@scaredme I’ve been trying to remind myself that worrying won’t change the outcome, it just adds more stress to everything else I’m already dealing with. Easier said than done, though.
The mental rabbit holes are brutal, especially at night. I’ve convinced myself I have every type of metastasis imaginable. Breathing issues? Must be lung mets. Leg pain? Femur mets. Headaches? Brain mets. Back pain? Spine. Nausea? Liver. 😭😭
Honestly, I feel like if the PET scan comes back clean, half these symptoms might just vanish. I even convinced myself I was losing weight… then I stepped on the scale and turns out, I’d gained. Just like you said, it’s wild how powerful the mind is.
Cancer messes with everything, even normal emotions. It’s like it rewires your instincts. And I know that even if I beat this, life won’t go back to what it was. A simple cold will probably send me into panic mode.
I also feel like if I had the energy to actually get out of bed, I wouldn’t be spiraling this badly. The fatigue is unreal, like my ankles are shackled to the bedposts or something. lol.
Re: Zoom Meet-up for Those With MBC: Place to keep chatting
@kbl - that is very perceptive of him. Glad to hear that he is excited about your upcoming visit. Am excited for you, your daughter and grandson. Sending lots of hugs and kisses.
Re: How long have you been Stage IV?
@tougholdcrow @ssales13 @emiliamarty @EddieJ @chicagoan @radiation_cinderella
I just wanted to let everyone know that I just got the results of my July Signatera test—negative! I am hoping this means that the 2.8 SUV on my PET scan, done the day before the Signatera test, is post-radiation inflammation and/or bone remodeling. Seems logical to me.
Now just hoping the switch from Anastrozole to Exemestane makes me feel a bit less "blucky." 😜 Just started it a week ago, so it may take a while for the Anastrozole to clear my system.
Hope everyone had a great weekend and is enjoying this lovely day!
Hugs, Pam 💗
Re: My Husband, My Life, My Love, My Family, My Cancer
@gailmary - Your nice comment is so much appreciated and I will keep it with me all day today. Glad to know I'm not the only one squeamish and nervous as heck about these things. Sometimes I think everyone else just "takes it" or isn't nearly as bothered about these things as I am, but on the other hand I find it hard to believe that's true. These procedures and their implications have big impacts on us physically and mentally. I hope I can reach the point of "almost getting used to them" like you have. So far I have not. Well I've got my fingers crossed that I get through all of this today without any real trouble, and you've have helped boost my hopes for sure! Thank you.
Having difficulty feeling 100% certain that I want a prophylactic bilateral mastectomy
Hello and thank you for the existence of this resource
I'm a 40 year old, triple positive, stage 2. I am awaiting my last chemo round on the TCH regimen. I decided to first start with a lumpectomy, as I was hoping at the beginning of my cancer journey that I would not need chemo. I also chose surgery first because it was small enough to operate and the surgeon assured me even with chemo first he would still have to take out as much tissue. Now my issue is that he didn't think I needed genetic testing. I then insisted a bit more with my onclogist and she ordered it. But these type of tests here in British Columbia, Canada, take a long time and I finally received the results after my surgery and turns out I have the BRCA-2 gene mutation.
Now I know that puts me in a high risk category for new cancers and also recurrence of this one and that prophylactic mastectomy is recommended.
But I feel I am still healing from my lumpectomy, it's very discouraging to have to do another anesthesia and surgery.
How much do I let my genetics and the fear of recurrence and/or of new cancers guide my choices. Part of me thinks, well let's get everything done now while I'm already on medical leave. But part of me wonders, inevitably, what if I just stay as is and live my life, it's also possible I'll never get a cancer again.
Such big decisions, with a chemo brain to add some level of difficulty. I'm finding this decision extremely difficult to make.
thank you
Alex
Re: Can we have a forum for "older" people with bc?
Petite - congratulations on your new cabin! Cooler weather and great scenery make an excellent combination. I hope you make many happy memories there.
Cindy - ahhhh! Those water views are so calming. I can almost feel the salt breeze. Glad to hear you are keeping your feet out of the water until you are fully healed.
Chris - the array of Tippy’s buttons are amazing. Such a smart dog (and a smart and patient teacher) to be able to communicate using the buttons.
Betrayal - glad you stayed inside today. You absolutely deserve a couple days of downtime from your gardening.
Illinoislady - love the meme. It makes me feel so much better to be flooded rather than fat. 😀
Intolight- I’m tired just reading about the sink overflow cleanup. Good for you for handling it.
Had the ENT appointment today for follow up on the ‘mildly suspicious’ thyroid nodules. Complete and total waste of time. Doctor was very pleasant but perhaps just a little condescending although that might be my interpretation of the meeting. Spent less than 5 minutes with me. Assured me that the radiologist took the liability by stating ‘no follow up needed’ on the ultrasound report. Not sure what he meant by that. Of course, the radiologist that read my TVUS in January 2024 said I didn’t have ovarian cancer - that didn’t work out too well for me. He also said that it is improbable that either BC or OC would metastasize to the thyroid. I asked about studies indicating that BC survivors have 2x the risk of thyroid cancer as the average person and he said I’m too far out from my BC diagnosis for that to be an issue. In short, no follow up needed and I should not worry as I am very healthy. I pointed out that I was not worried but my GYN Onc referred me and I felt I should follow up. I kinda felt like he figuratively patted me on the head and sent me on my way.
The CT and MRI scans in March/April of last year indicated a kidney cyst and a pancreatic cyst. The CT last month indicated the kidney cyst is no longer worrisome and the pancreatic cyst is stable. GYN Onc referred me to a GI doc for further direction on pancreatic cyst follow up. GI appointment is in September and I expect the results will be the same as today’s ENT appointment. “You’re healthy, nothing to worry about, blah, blah, blah etc.”. I’ll go but expect that will be the end of it.
My goal after that is to continue follow up with GYN Onc every 3-4 months and a yearly visit with my PCP. Oh, and I have an appointment in January with my MO to see if my WBC has returned to normal levels (if not, so be it). That is all I’m willing to do in the absence of any very concerning symptoms.
Tomorrow is forecast to be hot, although slightly less so than today and should be in the 70’s by Wednesday and for the balance of the week. Looking forward to cooler weather.
harley07
Re: Were you diagnosed young (under 45) with breast cancer? We'd love to hear from you!
I was diagnosed at 39, at the beginning of 2025. I am now awaiting my last round of the TCH chemo regimen. I felt the lump in my breast and caught it early enough that it had not spread but not early enough to not have to undergo chemotherapy. There has been a lot of mourning, loss of my fertility, loss of (for now) part of my breast, loss mostly of my innocence and carelessness. I feel like a medical object. I am now needing to decide if I move forward with a total mastectomy. It's too bad because I found out about my BRCA-2 gene mutation after the initial lumpectomy, I feel I am still healing from that surgery. Part of me wants the bilateral mastectomy so I don't need to go to the hospital every six months to get screening after screening since I am considered high risk of recurrence or new cancer. But part of me does not want to undergo another surgery. I find it really challenging to tap in with my inner wisdom and really know what i want to do with my body. I don't want to take a decision based on fear. But yeah in hindsight, I wish I had insisted more to get the genetic testing done after diagnosis( since my mother is negative the first doctor I consulted didn't think it was necessary and turns out I do have the BRCA-2 gene mutation). You really have to be an advocate for yourself. You are the specialist of your body. Don,T let the doctors make you feel like they know your body more than you. And yeah it's ok not to be ok!
Stage IIA multifocal invasive ductal carcinoma, 14 mm largest tumor, 1/5 sentinel node positive (2.5 mm), 66 mm DCIS, grade 2, triple-positive (ER+, PR+, HER2+), BRCA2 mutation, positive margins,