Diagnostics: CAT, PET, bone density, blood tests .....?
Were any of you diagnosed via bone density scan, CAT scan, PET scan, or blood tests (CTCs) after initial diagnosis, surgery, and positive nodes?
I will meet with my surgeon and oncologist tomorrow to go over all my pathology reports, test results, and surgical findings in depth. From everything that I have been studying it appears that some women are not diagnosed stage IV until after symptoms present or recurrence is evident. And yet some women do have one, two, or more of the above tests before chemotherapy - not only to establish a baseline, but also to possibly diagnosis stage IV.
I haven't fit the picture all along ... So I figure it's possible to be stage IV and be symptom free at this point. I have just been preparing myself and wonder if there are any of you who had a similar road already.
Thanks in advance.
Diana
Comments
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When I was Dx, I had CT/PET scan, chest exray and heart echo and I think some other bone scan (but not bone density)....that was after biopsies and MRI......
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I'm sorry you've had to join us here. (edited to add) I had a mammo first thing and was told it was good then a month and a half later, I was dx with a biopsy, then the tests started....MRI of chest & PET to determine stage. Then did a Muga, port placement, ALN biopsy and blood test before chemo. I'm sorry to say I have heard of some being dx at IV with no symptoms. I hope you feel more in control once you meet with everyone and have a plan of action in place....I did. Let us know how it goes.
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I was diagnosed by biopsy, had lumpectomy and then CT scans, ECHO, MRI and bone scan, all ordered by my MO. I had nodules on my chest CT and therefore had a PET. MO diagnosed me as stage IV but I have no symptoms from the lung or anywhere else. I am having another CT chest in a week after 3rd round of chemo to see if there are changes.
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Hi Diana,
Sorry to hear you've had to join us here, but man, you will find the best ladies (and men
) that will help you through your journey.
I can tell you are really anxious, and that's natural. One thing about cancer is that you are going to hear multiple answers because no two cases are alike. I always tell new people it's like learning a new language, one you never wanted to learn in the first place, and without a teacher! Take it one step at a time and soon "most" of it will make sense.
If your doc is saying you are not Stage IV then you are not. PERIOD. Put that into your mind and believe it! I did have an MRI and a PET scan before surgery then a bone scan shortly after if I recall correctly. Funny thing is nothing lit up in my PET for my 13 freakin positive nodes, and my BS said they aren't all that acurate.
Also you didn't mention, did you have chemo before surgery? If not if there were any lingering cells that and rads should knock the crap out of them.
Hang in there and take it one step at a time. We'll be here for you.
Sharon
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Diana, The order of my tests went: screening mammogram, diagnostic mammogram, core needle biopsy which confirmed the suspected cancer, CT/PET, echocardiogram and MUGA (necessary before certain chemos). Then I started chemo. After four doses of TAC I had another CT/PET scan and breast MRI. Then BMX and two more doses of TAC, and on to radiation. A year later, I asked to have another CT/PET scan before I had reconstruction, just to be sure all was still good.
No tests for the last two years other than bi-annual bone density (which I have to schedule soon). I don't think this shows cancer — that would be a nuclear bone scan. The test is to check my bones because I'm post-menopause and on an AI.
Onc does blood work on every visit which just went to every-six-months. The only cancer test I'm sure he does then is CA27-29.
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Here you go ...
I was sent from Gyn's office directly to hospital for a mammogram.
After the mamo, I was told to wait because they wanted to do a sonogram during the same visit.
The Radiologist came in after the sonogram and asked me if I had any family history of breast cancer. I remember this moment as if it were yesterday. I told her there wasn't any family history that I was aware of and her response was ....
"It really doesn't matter. We're definitely looking at cancer."
It was so difficult to pull myself together and walk back to the waiting room where my husband was. I didn't even have to say the words. My teary, red eyes said it all. Sorry, guess you didn't need all that.
After meeting with a surgeon that was highly recommended by a friend, things went like this ...
1. Core biopsy
2. Initial consult with Medical Oncologist
3. Breast MRI
4. Brain MRI
5. Breast MRI again due to technical problems with the first Breast MRI
6. PET Scan
7. Meeting with Medical Oncologist team to outline chemo plan and get results from all the scans.
When the doctor told me that all my scans came back clean I honestly thought they were lying to me. That's another moment I'll never, ever forget!
I've had three mugas in order to make sure my heart could tolerate and continued to tolerate Herceptin.
I also had a PET scan at the end of one year of treatment for re-staging purposes and another PET in December to rule out mets due to concerns my doc had with hip and back pain.
In the years to come, my oncologist believes in doing yearly chest xrays and will only send me for more diagnostic tests if symptoms indicate serious concerns.
Hope this helps!
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I had biopsy, lumpectomy, SNB, then lymph nodes removed. Then we went right to chemo, then rads. Three months after chemo ended they did a PET/CT scan. I've since had two additional CT scans because of having a diep reconstruction and a chest x-ray. My onc. doesn't do scans yearly unless I have something bothering me. He does blood work every three months. I see my surgeon every 3 months as well. Although at the next visit it'll be 6 months.
Rachel
IDC 4.5cm, nodes+, BRCA2+, ER+
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I had yearly mammogram,then repeat .
Saw surgeon,had stereotactic biopsy,2 core needle biopsies (I had a dcis and 2 idc's).
Then had 2 mri's and a PET/cat scan. PET showed suspicious area in shoulder,and ? nodes,?sternum to chest wall.
In all this mess went to Dana Farber for second opinion. Had cat scan guided shoulder biopsy that showed bone mets.
I am 65 .My tumors were all ES/PR strongly pos and her2 neg. Since it has already spread to bones,I was started on letrozole daily,and zometa monthly.
No surgery,rads,or chemo As the anti hormonals stop working,will switch to another. When all fail,as a "last resort" will have chemo.
My ca 27/29 has gone from 135 in July to 35.8 in December,and the 2 idc's have shrunk a lot.
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You gals rock! Thanks so much for responding. I have been getting some responses in both the III and IV groups that have and are helping to look at this.
I really wasn't that 'anxious' although it might have sounded that way. I just want INFORMATION in a big way and the more the better. So it helped to have some going into the appointments today. I was so thankful that I had researched chemotherapy drugs and regimens and scanning tests, etc. so that I had a list of questions and was familiar with different scenarios. And glad to know that there was all kinds of anecdotal evidence from the women on here who were symptom free and those tests did uncover things that otherwise would have flown under the radar.
So let's see ... here's where I am as of today:
Stage IIIA (got an A+ for having that figured out going into the appointment) LOL
My HER was negative with my needle biopsy done in November (HER2/neu - FISH), but my MO asked the pathologist to run a stain (analysis by immunohistochemmistry) on my tissue from the mastectomy since they were being so thorough with the report and it came back LOW with a +1 score.
That makes me a candidate for a trial involving herceptin for women with low HER. I may or may not get into the study. And it is a randomized study, so there is a possibility that I might be put in the control group and not receive the Herceptin at all. The study, however, is intriguing to me and the idea that participating might help me if I do receive the herceptin, that my participation one way or the other has the potential to help other women down the road in so many ways, etc. is reason enough to participate at this point.
So I will have chemotherapy ... and I am looking at this beginning anywhere from 2/7 to 2/21. We are giving my body time to recover from my left nipple sparing mastectomy with DIEP reconstruction and axilla node excision which took place on January 10th - just a little over two weeks ago. Doc leans toward beginning druing the 4-6 week post-op dates. But everyone (all my surgeons and doctors) are thrilled with my progress and recovery thus far. Me too!!!
All of that being said .... these are the tests that I am going to have going forward before Chemo begins:
Doctor ordered:
Bone Scan
CT scan of pelvis, abdomin, and chest.
The CT scan is scheduled for Fri and I will know tomorrow if I can get the bone scan done tomorrow. We were at the breast center (seeing surgeon, mo, picking up contrast, and making appointments for about 4 hours today. Long afternoon .. but well worth it.
Participation in the trial requires a slew of tests and these are the ones that I will need in addition to the two above:
Blood tests
Pregnancy Test
Echocardiogram or MUGA scan
ECG (electrocardiogram)
Hormone test (which will reveal if I am pre-menopausal or peri-menopausal or menopausal. I am definitely not post-menopausal.)
I am content with the scans that are going to be ordered at this point. Doc said that if there is any question whatsoever .. she will order the PET scan after the CAT and bone scan. That works for me. And all the other tests that are needed in order to see if I qualify for the trial and then where I would get plugged into the trial.
Still want to learn more about CTCs and markers. From what I have learned thus far by research ... I see value in knowing what they reveal (even if it is an incomplete picture) .. but also see merit in what my MO explained about this today.
Thanks so much to all of you who have responded! Hope you will continue to 'talk' to me and share the journey. This is a great community and I am learning so much from my fellow fighters and survivors :-)
I know whom I have believed and am persuaded that He is able to keep that which I've committed unto Him until that day. No one can snatch me from His hand.
Whatever the future holds ... I am in the best hands possible :-)
It is a blessing to have such a supportive online community of fellow fighters and survivors!
Blessings to each of you,
Diana
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Here's my run down in a nutshell:
Breast symptoms
Diagnostic mammogram requested by me and received the next day (never saw any doctor to look at my breast first, just called to get the script and this is what I would recommend to anyone in a position where they feel things are "not right")
Stereo-tactic biopsy of numerous calcification's that day, and then strong verbal diagnosis of cancer that day
Biopsy of numerous tumors the next day with ultrasound, biopsy of one enlarged lymph node (node came back negative)
Blood work (15.3 was 22 and is still around that number)
PET Scan, CT Scan, MRI of breasts, MRI of brain for staging, no seen evidence of spread
Mastectomy one month later, extensive DCIS, numerous tumors but largest 1.6cm (what they go by), four positive nodes.
Another month later, chemo TCH six cycles followed by 33 radiation treatments and one year of Herceptin (given with chemo and after chemo)
Close to 19 months since diagnosis at this time. RBC is still low and WBC is also a bit low at the moment.
Yes, I think it is possible to be stage IV and have no symptoms from the start. I "felt" fine while this cancer was growing in my body. I also think its possible to actually be diagnosed at an earlier stage when in fact you are really stage IV if there are no tests to clarify this. I also think its very possible to be a late stage with no visible cancer but also be stage IV because the growth is too small to detect at the time of scans. All any of us can do is hope for a long, long remission that brings us into old age. There is no "cure" for breast cancer. There is no cure for cancer.
But most of us will have this long remission into old age. I hope all your scans are clear!
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Oh and you have a wonderful, wonderful attitude!
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CT Scan and Bone Scan done on Friday. First stinking vein did not cooperate with iv. Oh how I hate needles. Although a port scares me, the constant poking and prodding with sharp objects is becoming tiresome. And having only the one arm to get stuck with over and over is not nice ;-)
Doctor will have the results by Monday and my appointment is on Tuesday. After reading someone else's experience with red flags and some of those actually having to do with spots that had shown up years previous .. I think I will see about getting my results from a car accident a couple years ago. Doc said I was not hurt, but there were some signs of degenerative arthritis. I want those for the doc to use for comparison/contrast so I don't get unnecessarily frightened if that is what is showing up on the scan.
Thanks for sharing your story and thanks for the 'attitude' encouragement. When I press into the Lord I find that my reliance lies there too. His hands are waaaay more adequate than mine to handle this cancer and my future.
Hugs,
Diana
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My dx was initially confirmed with a breast MRI. After that, I went through various testing: bone scan, pet scan, liver MRI and prior to surgery a breast ultrasound.
All the scans were clear except for the cancer in the right breast. Once we operated, they also found cancer in some of the nodes and in the other breast (neither showed on any scan), so I hear you on not being sure what an "all clear" really means.
ETA: I also had a heart ultrasound to make sure I could handle chemo. That was kinda cool actually, and my heart is in good shape, or was anyway. I completely understand wanting info. It is a steep learning curve, and in the beginning it drove me nuts not to know enough to judge what the heck they were telling me.
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CAT scan pathology shows what appears to be a liver hemangioma. So I am going to have an MRI tomorrow afternoon to confirm or dispute that finding. MO does not expect it to be anything more than a hemangioma ... but given my journey thus far, who knows? Should know before the weekend if it is hemangioma or metastisis. Also have a large gall stone - who knew? Didn't have a clue and don't why. Have to educate myself on gall stones. And a "calcified granuloma in the lingula" and two "non-calcified nodules" on the lungs. Those are evidently from some previous infection most likely from when I was an infant or a bout I had in the mid 90's where I had an upper respiratory infection that hung on for quite a while. No one is concerned about the nodules , the grauloma, or the gall stone.
Bone scan revealed what MO spoke of as arthritis most likely. This is consistent with my former xrays done about 20 months ago when I was rearended at a stop light. Primary Care doc then said the tests showed some degenerative arthritis in my spine that was not remarkable. MO didn't pursue this today but my new Primary Doc sent me downstairs for xrays just to rule that out too.
So ... that's the next step in my road to a complete diagnosis. Thanks again for all your stories. I will keep you posted one way or the other. I should know by Friday if not before what the results are for the MRI. I'm sure the xray report will be done tomorrow morning.
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I'm glad to hear they found nothing serious so far and I hope it stays that way. You have exactly what I have, I just couldn't think of the names....hemangioma & lung nodules. I was told both are fairly common and not to worry. It sounds like you have a great team and they are keeping a close eye on you....there is nothing worse than dr's who brush you off and disregard all you say. Let us know Friday, waiting with you.
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Spine xray came out negative.
Still awaiting the results of the MRI on my liver. Yesterday was a good day, but that MRI seemed the longest yet.
Perhaps it was because it took two sticks to get the IV. I HATE needles.
Perhaps it was because they played some really ethereal goofy music through it all.
Perhaps it was because I actually fell asleep during my previous breast MRI and a large portion of my bone scan. In this one I needed to stay awake so I could keep inhaling, exhaling, holding my breath and stop breathing over and over and over again. It was almost comical ;-) how many images they were taking. At least I know they are being thoroughly thorough. And they even gave me a dvd of my own to take with me.
So the countdown begins ... I imagine I will hear from my MO by the end of the day today.
In the meantime, I walked at the mall today and met up with a girlfriend who just learned that she needs to have a double mastectomy. We are in this together.
Hope you are all 'seeing' some sunshine in your day today. Look for the rainbows. They will appear.
Blessings,
Diana
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No metasteses to my liver. Spot was a hemangioma. Today I was walking on air ....with this most wonderful great news for a change! Set up appointments to continue in the drug trial/ study, get port placed, and begin chemo.
Yay yay yay!!!!!!!
In all things, giving thanks!
Diana -
Yay! Congrats....glad to hear it.
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Diana ... that's wonderful news! Time to celebrate!
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It ain't fun going through all those scans and waiting but, Wow!, is it wonderful when they come back giving you the all clear. Congrats!
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Hi Diana I'm so glad! it's like going through this process though is like losing lives...
In Canada they only check you as follows
1. mamo or other screen MRI
2.core biopsy or other depending
3. after confirmation then blood work and liver U\s
4.lung X-ray
5. nuclear bone scan assuming you are not in situ
no brain checking at all. Unless you have symptoms then no other checking AT ALL
I'm so glad for your findings!
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Thank you all for your words of encouragement and thankfulness and congratulations. In this road, having just about every other thing turn into more, it was absolutely wonderful to have this one not turn into more.
Love you gals!
Diana
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