How long have you been Stage IV?
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in your pocket for stable scan results. The longer I am stage IV, the higher the scanxiety.
Virtual hugs and fingers crossed.
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Thanks everyone for these kind thoughts. Since I'm going on a little trip, I've decided to not look at my scan results because I don't want to have a lot of worry and there's always a little something to worry about, right? I figure I'll get a call if anything is bad, and my appointment with my MO is not for two weeks. I'm at peace with this decision. @eleanora the farther you get with good results, the more likely it is that you will become one of the long term survivors, so fingers crossed for all of us in passing the 5 year median, and great sadness for those who haven't.
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Thank you, thank you, thank you for sharing a positive approach to the situation. And absolutely, fingers crossed for all of us!
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@tougholdcrow praying for good news when you are ready to read the results! @livinglifenow @ssales13 Im right there with you both - my next scan is 10/20 and I meet with my MO the next day to review results. May we all enter November 2025 with good health on our side! 🤞🙏🤞🙏♥️
Pam, so happy the play was successful! Congrats! Enjoy your RV vacay!!
ttfn, juliana3 -
@eddiej Great to hear from you! Praying all our scans have great results! I also have lipid panel, DEXA scan, and ECHO in October, all to see if my meds have caused any problems. Argh!!
Hugs, Pam 💗
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@livinglifenow @ssales13 @tougholdcrow @eleanora @chicagoan and other pals!
Hi all! I am so happy and thankful to report positive news from my October scans. Results showed no progression and either decrease in disease or no change. My MO is very happy and is satisfied with my treatment - so no changes at this time.
This was/is a great week for my family - DD and husband closed on their 1st house, DS and his GF both got new jobs this week (!!), I am doing well and it’s our 33rd wedding anniversary. My DH bought a lottery ticket today (😂🤞🤞).
Sending out happy healthy vibes and prayers for positive results to all. xoxo juliana6 -
Fantastic news, Juliana! Long may it last. And happy anniversary and all good things.
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@eddiej Juliana, I am thrilled for you regarding your test results, and also for all the wonderful things going on with your family. Blessings to all!
Hugs, Pam 💗
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That’s such wonderful news, @eddiej ! 🎉 Wishing you continued good results and many more happy milestones ahead!
The Mods
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@eddiej, @ssales13, @tougholdcrow, @eleanora, @chicagoan, @emiliamarty and anyone else on this thread!
Well, I have returned from my PET scan, had Olive Garden take-out (I was famished), and have the results of the test. No evidence of metastatic disease!! Yay! The only thing of note was "Multifocal ground-glass pulmonary opacities with mild hypermetabolic activity, most consistent with an acute infectious or inflammatory process." Just FYI: I did have "something" several weeks ago where I felt absolutely horrible. Lots of sinus issues and coughing. According to some online searching I've done, this is the most likely culprit and can take some time to disappear from scans. Not too concerned as I am feeling better now, but as I mentioned earlier, I take a long time to fully recover even from mild sleep loss or eating at the wrong time. I must get back to a normal routine.
Wishing and praying for fantastic results for the rest of the October Scan and Imaging Girls!
Hugs, Pam 💗
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@livinglifenow What great news!!!! Thanks for sharing Pam.
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@livinglifenow Pam, That’s awesome news! So happy for you!
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Hello all, just checking in as I am now 1 year into my stage 4 diagnosis and Kisqali treatment. Going for my 3 month scans in 2 weeks and feeling some scanxiety. I have no new symptoms with the exception of appetite loss. Any one having the same? I wonder if it’s just nerves. I am feeling stressed and can’t seem to control the stressful thoughts like I have been doing. Maybe once I get through these scans.
Big Hugs
Lafish
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If there are no symptoms at all, I hope that your next scan will be reassuring and show no changes.
It is normal for us to feel anxious before every routine test or scan—I also feel anxious whenever a test approaches.
My question is: do you perform marker tests such as CA 15-3 or others? Sometimes, marker tests can give an indication of the treatment’s effectiveness.
As for my doctor, he asks me to do marker tests every month along with blood tests and monitors the treatment’s effectiveness through them. However, some doctors do not rely on these markers. For me, the markers are very sensitive to my condition, so my doctor follows them carefully.
I hope that the other members can provide additional answers to what I have mentioned.
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@lafish I was on Kiskali and I also had a decrease in appetite. That said, the stress before each control scan is still present, but it's true that my markers have been good since the beginning of the year, so I'm a little more relaxed before my quarterly check-ups. During my first follow-up scans after the stage 4 diagnosis, I took steps to arrange my funeral and made contact for suicide assistance! (lol). That's how anxious I was. Two and a half years later, I no longer have these kinds of thoughts before check-ups, but still, it's never easy to wait for the results.
I hope you receive good news in two weeks. Best regards.4 -
@lafish Strangely enough, I don’t have a ton of scanxiety prior to tests; however, when I am getting ready to open the results in my patient portal, I have difficulty breathing and start to hyperventilate. That is the real moment of truth for me.
I pray your scans go well. As @norah2024 stated, tumor marker tests can be indicative for some people as to how things are going. I get both CA 15-3 and CA 27.29. They have both been within normal range following my first two treatments last year. However, I had minor progression last December and again in March of this year. Since I had started getting Signatera tests last October, the first of which was negative, I continued to get them with each PET scan. And, as you can see by my lengthy signature, my Signatera and PET results have been aligning. Since my recent PET was all clear, I am hoping my upcoming Signatera results are negative again. Has your doctor ordered a Signatera test for you?
I agree with @soldanella that it could in part be the Kisqali or just scanxiety that is causing loss of appetite. When I have a loss of appetite, it’s typically caused by a slight bug of some sort that’s going around. With all the other aches and pains I have from my medications, I’m never certain if it’s the medications or if I have some sort of bug.I apologize for the long diatribe. I am busy watching my husband work on a simple fix to the dryer in our RV. However, it’s taking hours. We are planning a two week adventure starting next weekend. Can’t wait to get away for a while. Wishing everyone a great weekend.
Hugs, Pam 💗
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@lafish I'm over two years out from diagnosis and 20 mos on Kisqali. I decided at my last scan that I wasn't going to look at the radiologist's report. I was just tired of worrying about the reported details that turned out to be nothing. I know progression will happen eventually but there's a comforting thing called "conditional progression free survival" (cPFS) which means that the longer you are on the drug the greater the chance that you will have even longer without progressio. So, for example, if you've made it 12 months without progression you have a median cPFS of 40.5 months and if you make it 24 months you have a median cPFS of 53.6 months. The recent Ribanna study explains this if you want to know more.
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@livinglifenow Pam, I am so happy for you! Such wonderful news! Have a fantastic time on your upcoming trip, stress free.
I get nervous before scans and I’ve only had two since my diagnosis. I expect to always have it. Comes with the territory in my mind - this is my life now and how can one not be nervous??
Thank you Pam and @tougholdcrow for noting the Signatera test and the Ribanna study. I have to stop living in denial and start researching.
The more you know…. And all that. xo juliana1 -
@eddiej Juliana, so good to hear from you! All the gals on this thread are so encouraging and thoughtful.
Some other interesting news: I had a DEXA scan last week (a year after my last one) and my osteopenia in my hip actually improved! That’s after being on AIs for over a year and not doing any Zometa. I’ve just upped my strengthening exercises.
I’m trying so hard to not be on tons of medications that create side effects that require more medications!
I do realize that if I get bone mets again, then Zometa will be in my treatment package!
Best wishes for clean scans to you, Juliana, and everyone else. You are all in my thoughts and prayers each day!
Hugs, Pam 💗2 -
Hi there everyone,
Thank you for your comments and advice about my decrease in appetite, I also realized I’m heading for my Zometa infusion this Wednesday and I am usually apprehensive about having it. I’ve only had mild side effects so I’m not sure why I worry about it. I’m trying hard to calm myself down but for some reason I seem to have several appointments coming up around the same time.
Thanks again for your advice
Big Hugs
Lafish
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Big day for me tomorrow. Oncology visit, Zometa infusion, palliative care appointment. Then Thursday, Faslodex injections. Don’t know when my next scan will be. My back has been hurting but I don’t know if it’s mets or my exercise classes! I’ll be sure to discuss with the doctor. Oh and brain MRI next week.
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@AJ Wow! You’ve got a lot going on. I am thinking of you and sending positive vibes your way!
Hugs, Pam 💗
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Has anyone here had the Caris blood test? To look for mutations? My tumor marker CA 15-3 is going up so my oncologist is ordering it.
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I actually haven’t done this test before, and I haven’t heard of it — although my oncologist did run some genetic tests to look for any mutations, since I’m in a similar situation as you, with a persistent rise in CA 15-3.
I’ll ask my doctor about it at my next visit next week to see if it’s suitable for me and what its purpose is.
And update you if i get any information
May I ask how high your CA 15-3 level has reached?
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@AJ I haven’t heard the name of this test before either.. I did a genetic blood test at the beginning of all this mess but I don’t know what they called it or if it was the same. I’m sorry I’m absolutely no help but I’m sure someone on here will answer soon who does know. Hope you have a good weekend.
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I was wondering if you wonderful ladies on here who have had mastectomies could tell me what to expect before and after and tips on anything I might need beforehand. I go see my oncologist on Tuesday Nov 4th. The results of PET haven’t changed and she mentioned surgery to me. So I’m just trying to get prepared. Thank you should also mention that I would have double mastectomy.
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dear @ssales13
At first, I hope everything goes well with your upcoming surgery.Before the surgery, there were many tests — such as MRI, CT scan, biopsy, and others. I didn’t undergo chemotherapy before the operation to shrink the tumor, because I wanted to get rid of it as soon as possible.
But right before the surgery, the doctor asked me to do a list of blood tests — that’s all I remember.
As for me, I had a mastectomy on only one side (the left), and I kept worrying afterward, asking myself why I didn’t have a double mastectomy to eliminate any future anxiety.
In my case, the tumor was large — 5 cm — and one lymph node was affected (although the doctor removed 10 lymph nodes as a precaution).
After the surgery, they placed a drain on the left side to collect blood, connected by a tube to the surgical site. That was the most bothersome part for me, because I often forgot about it, and when I got up to go to the bathroom, it would slip out of place. I later heard that some patients wear a small bag to hold it in, so they don’t forget or drop it.
The doctor asked me after the surgery if I needed pain medication, but I said no because I didn’t feel any pain — which turned out to be a big mistake, as I was still under the effect of anesthesia, and once it wore off, I couldn’t sleep well.
My doctor didn’t instruct the medical staff on duty to give me a blood transfusion, thinking I hadn’t lost much blood, though he did order four bags to be kept ready in case of emergency.
Indeed, my hemoglobin dropped, and I had a severe nervous episode with trembling in my hands. Once they gave me a blood transfusion, my condition stabilized.
I don’t remember how many days I stayed in the hospital, since this was four years ago.
But because 10 lymph nodes were removed, I still experience pain in my arm to this day. I have to do specific daily exercises to prevent swelling or pain.
That’s all I remember — I hope this information helps you.
A little while ago, I went back to the journal where I record all my notes. I found that I had stayed in the hospital for four days. This depended on the drain they placed for me, which the doctor examined every day to monitor the amount of blood until it completely decreased.
I also found that the doctor gave me antibiotics through an IV after the surgery, and I continued an antibiotic course at home after being discharged.
After the surgery, they perform a pathology examination of the tumor to determine its size and type.
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