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PET scan on Thursday. Again

Hi,

Another PET scan this Thursday. Wish me luck.

I hate all these scans. My last one was in August and showed "partial responce" to ibrance, faslodex and exgeva. Tumor markers have been fluctuating again between 55 in August to 68 in November now 57 again. Hopefully this scan will show improvement. Holding my breath.

Lisa

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I also go this Thursday for a CT scan, 2nd one since being on Ibrance, letrozole and zometa. Fingers crossed for both of us 🤞🙏🏻

Susie

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Hi,

Hopefully we will both get good results

Lisa

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Prayers for you and your scan 🥰

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Prayers for you, too, Susie!! 🙏🏻❤️🙏🏻❤️

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Good luck Susie 🤞🏻

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Hi there

I had my third ct scan recently and get results today

It’s nerve racking every time ..I usually have to drink a disgusting concoction but this time it was only water ( not sure why)

My markers have been going up steadily and I’m fed up and worried

I’ve started to have some therapy sessions as I’m not dealing with this situation very well..too early to tell if it helps

I wish you all the best with your scan

Barb xx

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Barb, wishing you good results. You are so right. It's nerve wracking. It takes awhile for therapy sessions to make a difference. Hang in there with them!

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Hopefully you will get good news.

I hate all the prep, 24 hours before no caffeine, no sugar, no carbs..NO CRACKERS. by the time they give me that disgusting drink my stomach is a mess. Then once it is done I get my faslodex butt shots.

not looking forward to it.

Lisa

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Wishing you good results Barb. I agree it is always a stressful time. I go for my CT on Friday. I only ever do the IV contrast so I don't have to drink that crap. Usually I wait about 10 days for my results which is stressful too but this time I've asked her to call me as soon as she receives them. So should be early next week. Blood work today. Appointment with oncologist tomorrow for drug refill if labs good. Never ending it seems. Let us know when you get your results. We are here for you. Hugs.

Sandra

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Prayers for your scan ♥️♥️

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Prayers for good results on your CT scan, Sandra! Love to you!! Linda ❤️🙏🏻❤️🙏🏻

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All the best for Friday Sandra 🤞🏻

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I feel blessed that my doctor calls me the very next day after the PET scan. You should request that since they get the written report that very same day and the visual the next day. Perhaps it's your individual hospital system, but I would check it out! Anxiety waiting is the worst! Good luck and God bless ! Kathy

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Hi Kathy. Unfortunately no my oncologist doesn't get reports in our hospital at minimal until 3-4 days later. I think it is partly her and my fault in that we have requested a specific radiologist to interpret the scan. This is someone we both know and respect and since he interprets all of my scans it gives us more consistency. I saw her this morning and my labs were good including my tumor marker so that is always good. Just started cycle 9. Now hubby and I will head back to the center tomorrow for the CT. Thank you.

Sandra

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Thanks for your reply. It makes sense the way you are doing it, so you must remain patient in that case! Onward and upward! We are in this together!! Health is what it's all about. Good luck to you!

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Prayers for your scan results ♥️ .... can’t wait to hear !!!

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Hope you got good results, Barb!! XXOO Linda ❤️❤️🙏🏻🙏🏻

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Fingers crossed for you Barb 🤞🏻

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Sending positive vibes of improvement to you with love Marianne

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Hi Lisa, Susie, Barb and Marianne,

I wish you all well with your scans. Hopefully you will all get good results. I like to plan something nice after scans like lunch out or a trip to the shops so that I have something good to look forward to afterwards.

All the best to you all!

Sophie x

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Hi ladies

Markers have again crept up but scan is stable and pleural effusions totally gone so I’m staying on Ibrance/letrazole combo which I’m pleased about

Another scan in 2 months because of markers going up steadily which still concerns me

Good wishes to all

Barb xx

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Great news Barb!

Sandra

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Great news!

Lisa

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Hooray Barb!! 🙏🏻🙏🏻❤️❤️

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Hi Barb

Congrats on your response to PE! Did you get any special meds for that? Thorosentisis(SP?)

Mine is large ,only in 1lung,but stable.Meds have had no effect on reducing it.Had one Thoro. (that I felt was awful) but no others.Breath is still pretty good.

Current CAT suggests now have bone mets in pelvis and spine.Will prob be switched from Letrozole to Faslodex and z bone infusion.Blaagh!

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Hi there

I didn’t have anything different for pleural effusions just take Ibrance letrazole combo

Good luck with your treatments

Barb xx

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Thanks,Barb.

Mine hasn't changed in 6 months.I am on the same meds as you .

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Let’s hope we stay the same forever

Barb xx

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Thanks for sharing the good news! That's impressive about the pleural effusions...congratulations! :)

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Thanks Lynne..

I’m still whittling about the markers despite what you ladies have said..glad scan was stable though

Barb xx

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Gosh, Barbteeth, I hear you on that re: TM's...I do try to remain objective/realistic, so of course increasing TM's is not what we hope for, but on the flip side, as my TM's increased gradually, irregularly (up, up, down a bit, up a bit, etc.etc.) for years, they sort of lost their power to stress me out a lot. A little, yes. :) Be well...

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That’s interesting..maybe mine will be like that

At the very beginning of treatment I was on letrazole only and they dropped dramatically from over 1000 to about 300 ish lowest was 118..now up to 170.. I’m on Ibrance as well now since June

All the best

Barb xx

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Good news, happy for you.

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Thank you Mary

Barb xx

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Hi Barb, my oncology nurse says stable is GOOD. That must be a relief for you. I have my CT scan today......I just have to drink lots of water and have a dye injection before it. It is all horrible but we are all still here. Cheers, Fay

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Hi Fay

Good luck with the scan..I’m grateful for stable but still worrying about increase in markers yet again

May we be stable for a very long time!!!.. like forever

Barb xx

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I agree, 100%. Fayx

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Stable, I'm told is good, no growth! My doctor doesn't really relie on the marker because mine started out normal anyway and I still ended up with MBC Go figure!

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Yes from what I’ve learnt on here the markers do seem to fluctuate and sometimes it’s meaningless but other times it can mean progression...mystery to me

Barb xx

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Good luck Fay 🤞🏻

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That is great news Barb. The markers are sent to worry us, I think! Mine generally continue to creep up and are way above the "normal" range and yet I feel good and my oncologist has not found any reason on physical exam to order another scan just yet. Who knows

Keep well and enjoy the riding

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Yes the mysterious markers!

Barb xx

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Hi Barb!

Thanks for the update. You must be relieved to hear of the improvement you have made!

Take care,

Sophie ❤

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Thanks Sophie

I’m pleased with scan result ...it’s just those damn markers going up again..I wish my oncologist didn’t do them as it’s just a worry..I remember you mentioned that your oncologist doesn’t even do them

Barb xx

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You're welcome, Barb! I'm glad you have had some good news. It's so uplifting, isn't it? It isn't all doom and gloom. We can have some great results, which can give us confidence in our oncologists, treatment and the way out bodies are responding to treatment. I also find it easier to handle this disease when I get some good news. No, my oncologist never even mentions tumour markers! I trust her judgement.

Sophie ❤

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Congratulations Barb, stable is good! Happy for you. Love, Marianne

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Thanks marianne

I still feel like I’m in a bad dream!

Barb xx

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I know. This really is a nightmare! We are coping the best we can!

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Great!!!!! Im so happy for you! Cheers to many more stable years xoxo

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Sending positive vibes your way!! Keep us posted with results. We are all pulling for all of you ladies!!

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Markers are so low ♥️♥️ ... mine are finally in the 300’s and I am thrilled! Prayers for you and your scan 🥰

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Hi, my markers never went higher than 72. From initial BC in 5/2003 until 9/2015 they were normal range. Then the started to rise. When they hit 50 I had a PET and we found MBC in medisternium lymph and bone ( sacrum and some vertebrea). For me it seams any increase in markers means something. I took Arimidex for almost 2 years and my markers fell back to normal range. When they started to increase in the fall of 2017, the PET showed increased uptake and size. That is when I switched to ibrance faslodex and xgeva. Hopefully it is still working.

Lisa

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These markers are so inconsistent..they seem to be accurate for you though

Mine have slowly increased over 3 months yet my pleural effusions have disappeared and bone mets stable..makes no sense or maybe I’ve had some progression but too small to show on scan?..eeek

Barb xx

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Happy for you!

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Good luck. .. 🙏🙏

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Prayers for you, Lisa! I have my next one on Friday the 25th. Always a source of jitters. I’ll be thinking of you! 🙏🏻❤️🙏🏻❤️

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Will think of you the day of your scan.

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Good luck Lisa. You’re not alone. I’m awaiting scan results, Ibrance and oestrogen blockers failed me and I’m now on xeloda. It’s a nerve wracking time.

Xx

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Good luck Ange

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Sending lots of good vibes your way! It does sound like you have good reason for optimism, but I know it's sometimes tough to be optimistic when waiting for results...Good luck and please let us know how it goes!

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Good luck today Lisa 🤞🏻

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Good luck on your scans! I have my monthly visit today, I have tons of questions so I write them down, but my doc always seem to know what I want to ask before I ask. God bless you

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Good luck today with scan. We all dislike the process, BUT they can bring good news too! Sending good energy your way!!

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Lisa holding my breath and praying for good scan results for you! Scans are so nerve wracking. I hate them too! Scanxiety is alive and well on this site and you have my support and love. Marianne Thinking of you today!

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Best of luck to you. I will get my first scans since starting treatment next month. 🙏🏼

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Tumor markers aren't outrageously high. Praying you have positive results on the scan! ❤

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I can truly appreciate how you feel about these scans. I live three months at a time because every three months I get a complete bone and Cat Scan. Then I wait two or three days to find out what my next three months is going to be like. One thing, I keep reading about people checking their tumor markers to see what treatment they should get next but when I went to see Dr Susan Blackwell (who was the premier Breast Cancer researcher and Oncologist at Duke Cancer Center and now is the VP of Breast Cancer Research at Smith Kline) told me they don’t go by tumor markers anymore and they use Bone and Cat Scans to make their decisions. Can you or anyone else tell me what their doctors say about tumor markers. Thanks

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Hi

My oncologist seems very interested in tumour markers and is really watching mine carefully as they’re slowly creeping up..however the latest scan showed stable bone mets and a pleural effusions actually disappeared..I don’t get it

Anyway she’s keeping me on the same treatment..Ibrance and letrazole

I almost wish I didn’t know about the markers as they just make me worry

Barb xx

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I think that is why Kimberly Blackwell didn’t use tumor markers. I found a well written article and thought this might put you at more ease. It follows

How Accurate Are Tumor Markers?

There are many questions associated with breast cancer testing and their accuracy. Do tumor markers give accurate understanding of what's happening in an person's body? Why do some doctors use the test and some do not? These are just a couple of the questions we need answered.

BY BONNIE ANNIS

PUBLISHED AUGUST 02, 2017

Bonnie Annis is a breast cancer survivor, diagnosed in 2014 with stage 2b invasive ductal carcinoma with metastasis to the lymph nodes. She is an avid photographer, freelance writer/blogger, wife, mother and grandmother.

Breast cancer can be confusing, especially to those of us who are armchair oncologists. It’s pretty normal to play the compare and contrast game with our diagnoses, or at least that’s what I’ve found in the breast cancer community. When I heard some of my friends talking about their biomarker tests, I felt left out. I had no idea what they were talking about. They were comparing their numbers in a matter-of-fact way, not in a one-up-manship kind of way. Timidly, I asked for an explanation and was quickly given a response. They wondered why my oncologist hadn’t performed a biomarker test and I couldn’t help but wonder, too. Surely he’d tested me, but just to make sure, I went through copies of my medical reports. I didn’t even have a clue what I was looking for so I had to ask. My breast cancer friends instructed me to look for tests named CA 125 or CA 15-3/CA 27.29. With that information, I thumbed through my records again. There were no such tests. Wanting to understand what these tests were and why they hadn’t been performed on me, I consulted Dr. Google.

Information I found included the following: Tumor markers are also known as biomarkers. They are substances found in the blood at elevated levels when advanced cancer is present in the body. There are about 20 different kinds of tumor markers but only three are specific to breast cancer. Those are identified as CA15-3, CA27.29, CA-125, and Carcinoembryonic antigen (CEA). Most tumor markers are made by normal cells as well as by cancer cells, but they are produced at higher levels in cancerous conditions. These substances can be found in blood, urine, tissues, and other bodily fluids of some patients with cancer. Most tumor markers are proteins but there have also been gene expressions and changes to DNA that can also be used as tumor markers. A universal tumor marker, with the ability to detect any type of cancer, has not been found.

According to the website, cancer.gov, “Tumor markers are used to help diagnose, detect, and manage some types of cancer. An elevated level of a tumor marker may suggest the presence of cancer, this alone is not enough to diagnose cancer. Therefore, measurements of tumor markers are usually combined with other tests, such as biopsies, to diagnose cancer.” According to another website, cancer.net, “Tumor marker tests may also be used to screen for cancer in people with high risk of the disease. Some may be done to learn more about the cancer when it is first diagnosed. However, the presence or amount of a tumor marker alone is not enough to diagnose cancer.”

There has been no evidence to prove that tumor markers are 100 percent reliable for determining the presence or absence of cancer. Many circumstances, such as other health issues or disease, can contribute to raised tumor marker levels. There have also been incidences of increased tumor marker levels in people with no active cancer. Blood samples for tumor markers can vary over time and may make obtaining consistent results difficult. In the beginning stages of cancer, there may not be enough cancer cells present to give a clear picture of what’s going on in the body so early testing could be inaccurate.

Blood or urine tests are used to measure tumor marker levels in the body. These samples are sent to a laboratory for specific evaluation. The results from these tests can result in a false positive or a false negative report. Without complete accuracy, false positive or false negative results can be distressing to the patient and could suggest a tumor is present or growing despite aggressive treatment.

After reading the pros and cons of tumor marker tests, I felt more at ease, but at my next appointment, I confronted my oncologist. I asked why I had not been tested. I explained I’d feel better knowing my tumor marker level. He looked at me and explained he didn’t feel the need to test me. Still, I wanted to know. I felt I would have a better idea where I stood if I had a concrete number to grasp.

Last week, I left my original oncologist and moved under the care of a local cancer treatment facility. One of the first tests performed at the new location was a blood test. When I asked what they were looking for, I was surprised to find they were performing tumor marker tests. I received copies of the test reports via email. As I scrutinized the results, I found I’d been tested for the CA 15-3 and CA 27.29 markers. My CA 15-3 marker was 26.8. My CA 27.29 marker was 28. Now I had concrete numbers but had no idea what normal levels were so I didn’t feel secure. Once again, I consulted Dr. Google for normal ranges on these tests. I found that readings under 30 were considered to be within the normal range. I felt better knowing I had numbers that fell under the normal range, but was my security a false security? Did the biomarker or tumor marker tests really give an accurate view of my cancer situation? Was I really cancer free? What if the tests weren’t accurate and cancer was actively growing inside my body? I needed more information so I shared my concerns with my new oncologist. She informed me the tests were just a reference. Some oncologists use the tests and some do not. She felt they were helpful and would continue to periodically test my levels. She assured me she would never replace more diagnostic tests such as PET scans, MRIs, and bone scans with tumor marker levels. I have a bone scan scheduled for August 10th and I’m sure those results, along with the tumor marker levels, will give my doctor a more accurate view of what’s going on in my body.

If you haven’t had a tumor marker test performed, don’t feel slighted. The test levels may be a good indicator of your situation and then again, they may not. As with all medical tests and procedures, there are many variables to consider and we need to leave that up to the trained professionals instead of the arm chair wannabes.

Sources:

cancer.gov/about-cancer/dia...

cancer.net/navigating-cance...

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Sorry I'm cutting into the conversation but I wanted to thank you for sharing this. My oncologist does test my CA 15-3 monthly but I know she just gives the results a quick glance if that. I however for some reason like to follow my levels. She told me that in my EMR record she has a flag attached that if there is a dramatic increase in the level she will get an alert. She said she would never guide treatment changes based on the tumor marker levels, the scans and how you feel in general are gold standard. I'm not sure mine indicate much really, even though of course when they drop or stay stable I'm happy. To be honest mine at the highest were only 48 or something and I have bone mets practically everywhere so????

Sandra

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Hi,

My Onc says that for some PTs tumor markers correlate with the cancer, a rise in markers can mean an increase in cancer activity, but he also sees PTs who have wide spread cancer with tumor markers that have never risen. The markers are just another thing that he monitors.

In my case my markers seem to correlate with my cancer. From initial Dx in 2003 with surgery chemo and rads my markers remained in the normal range until 2015 when they started to rise. A PET revealed mets to bone and lymph. Arimidex halted cancer growth and my markers again dropped down to normal for 2 years. When they rose again, a PET confirmed that the cancer was actively growing and my treatment was changes.

In my case my Onc does tumor markers basically once a month. If they do not change he will do a PET every 6-8 months, if they start to rise ( or I have new complaints) he will order the scan right away.

The markers are just something else that he monitors. He says that they fluctuate on their own and can rise with illness such as the flu without any increase in the cancer. Plus, since we know that I have cancer, elevated markers are kind of expected as long as there is not a large jump.

My dad had prostate chance for over 17 years that failed rads but was managed by hormone therapy. In the end when that treatment started to fail his markers started to double every month, then every week. Once they start doing that they can climb very high very fast. So I try not to worry when they fluctuate 57 to 68 to 56 to 62. When my Onc shows them to me he pulls up the past 12 months and looks at the whole picture, not just the one month.

Lisa

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I am so happy I found this site. I was so alone with my diagnosis but I am getting so much information and it makes me feel so good to share what I have learned with others. Thank you so much for thanking me. Now that I am not working to still be affecting people makes me feel life is still worth living.

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Wishing you good results 💪💪💪

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