Did anyone have a CT or PET scan early on?

I did not have a CT scan or bone scan after digs noises or before chemo. I had an abdominal CT scan after my first round of Taxotere which confirmed chemo indused severe colitis but that is it. My MO has said that there will not be scans unless we find a lump or I have a persistent pain. I guess current thinking is that the scans produce too many false positives and standard of care doesn't change much by waiting. Who knows? A part of me likes the reassurance of the scans annually and another part of me wants to turn a new corner in 2015 and not think about cancer all the time.

I did not for the reasons mmta girl stated. While intellectually I get it, a baseline scan would have given me peace of mind right now- when every ache and pain has me reeling in fear. I sure wish the whole medical establishment would give some attention to the psychology of cancer, not just the biology of cancer. Sigh.

I did not-just an MRI--- but did have a ct scan last year for excessive coughing. they found nodules on my thyroid, which were malignant and had to be removed (all is well) and a nodule on my lung (which freaked me out). Pulmonologist says it is a benign infection, BUT protocol is that one is supposed to have a CT scan every 3 months to check for growth (which he says will not happen). I managed to negotiate every 6 months since no one was worried about this, but I was worried about all that radiation. As the dr said at the time--"it is great to have all of this technology, but once we see something, we have to foliow up". I can tell you that the stress related to the the lung nodule was immense. I am now a huge fan of a "less is more" approach to screening. there are lots of things in our bodies (like this lung nodule) that we don't need to know about.

I have always been fascinated by those studies of autopsies of older people and the large percentage of them that had breast or prostate cancer, did not know about it and it never affected them. I am grateful for our screening technologies, but I think the system needs to be more selective in how these technologies are used. I am hoping to get through life without ever having a PET scan.

I had ct and bone scan after finding breast lump. I did have a node that was swollen too. I got the impression they would have done those scans even without the node.

I had complete brain to thigh scanning (MRI's, pet/ct) before treatment started. That might be because I was IBC though. That's how they found out about my bone mets because I had no pain in my back. I am glad they did all that as a baseline.

Nancy, I have very dense tissue and the MRI was my least helpful scan. I don't think I'll even let them do another one, given how uncomfortable it was and how unhelpful the results were.

Shellies...like you I have never had any scans. It has been 1 year since my last treatment, met with my mo and she said no scans. I am at Emory and they won't do scans for me unless I have a problem. I have become a paranoid nut! I too wish I could have one for peace of mind.

I had a PEM scan initially after DX; CT scan of upper chest and neck, bc Dr thought he "felt something". I'm sure the risk outweighs the benefit at some point, but finding that fine line is the trick. I was kind of glad they didn't give me any more scans than they thought necessary. I have been mammo'd, radiated, scanned too much already....oh, and had a chest x-ray and another mammo after biopsy. I trust my Dr's and try to stay informed.

Good luck, ladies!

I just heard back from Kaiser, BC Coord. She says they don't like to give PET scans because of the strong radiation.

It's sometimes hard to tell if there's a policy to try to keep tests down due to costs working somewhere under it all. Yes, I'm a bit cynical AND paranoid!

Other doctors said PET and MRIs are Standard!

I think the 2nd Op. recommended I get the full range of tests because I have a 3cm lump and am HER2+ and found the lump myself in November after a mammo didn't find anything in March. And HER2+ is known for spreading about and going to brain.

I THINK I'd like to know. I think the outside 2nd op docs, with nothing to win or lose, wouldn't be recommending tests that aren't necessary!??!!! I'm cynical and paranoid, but they say most cynics are idealists at heart, and that is SO true of me. I really WANT thinks to be good, basically. But I worry that people and systems are so fallible!)

SO-- True, most drs won't recommend tests unless they find something. BUT I feel like I should have paid for better tests on my own for my breasts (which aren't terribly dense tissue, but are dense), and maybe that would have found the stupid cancer before it was 3cm!

I don't see the big down-side in more tests. False negatives are bad, and cause more procedures--but at least the people are sure it's not cancer! Right???

Maybe it's hind-sight speaking, but I'd really rather have had more tests on my dense breasts... Even MRIs and ultrasounds won't find everything, I know, but at least I'd have had a chance of finding something...

And so that goes for now that I've been diagnosed, too! I want to find all that stuff! I'm getting an SNB without any ultrasound findings, to make sure of the nodes, and that's not exactly a minor thing, so why not more tests?

At least I got a CT of my abdomen/hip. They said they found something on my lung that was 2mm!!! MO reported back to me that nothing looked cancerous anywhere, but they'd do another CT months down the line. That's a bit freaky.

But I have the bc to deal with first... and even settling on doctors and treatment!!! after 3+ weeks since dx! And I'm thinking of going PPO since the Open Enrollment Period ends this week, which will further screw up things, but at least I'm getting SOME stuff done-- MUGU on Wed. since I'm thinking of Chemo first, surgery after...

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A number of you sound like you've had the full battery of baseline tests. I guess I really need to push for them--or try and pay for them myself??? gah.

It says on this site that:

PET scans can be useful for evaluating people after breast cancer has already been diagnosed, in a number of different ways:

• to determine whether the cancer has spread to the lymph nodes
• to determine whether the cancer has spread to other parts of the body, and if so, where (metastatic breast cancer)
• to assess whether metastatic breast cancer is responding to treatment

suemed8749 -- How were the tests stressful? Just asking since I'm going to have to try and fight for a PET. (They gave me a abdomen/hip CT with no problem, though.) But you'd still rather do the tests than not have them??? --Thanks for your input!!!

I think doctors and insurance companies will often be fighting each other a bit! Their interests are often at odds. And getting any bunch of people to agree on something usually isn't easy!

A couple of thoughts regarding scans absent symptoms. A scan can only tell you what is going on in the moment. Cancer cells smaller than 2 mm are unlikely to be detected with current technology. So, a clear scan is no guarantee that there are zero malignant cells that could lead to a stage 4 diagnosis. So if that is the case, would a clear scan really put your mind at ease, or just lead to a desire for additional scans?

For stage 4 patients as mentioned above, scans can monitor the efficacy of treatment. But even then the best you can hope for is NED - no evidence of disease. That is not the same as cancer free.

April I agree with suemeds about those tests being stressful. That pet/ct scan made me hit rock bottom. The stress for me lies in waiting for the results. It was horrible. I am glad it was done now though. The actual test was no problem for me

I remember feeling very relieved after my MRI and Scan, reassured I guess. Haven't had the results on my latest MRI so still a bit nervous as it's my one year anniversary soon. In New Zealand our medical is free under the public system, so that could also explain why I've had so many tests. I know ILC shows up much better with MRI's, mine did anyway and it was barely detected on Mammogram.

Oh... so no PET? How about CT of more than hips/abdomen? (Brain and Breats? for HER2+?)

KP doesn't even want me to get an SNB before neoadjuvent Chemo. They say they only do it after during breast surgery. Wow. I think I'm going to be in big trouble...!