Did anyone have a CT or PET scan early on?

I was Her2+ and node positive and did not have any brain scan or CT scanning - I had an MRI prior to surgery and a PET prior to chemo.  You will find that this type of diagnostic imaging is not universal from physician to physician, some do certain types of scans depending on diagnosis or symptoms - or based on whether or not it will change treatment choices.  One of the reasons to determine nodal status prior to starting chemotherapy is that is that if you have positive nodes they may be more inclined to do additional scans - if your cancer is confined to the breast, possibly less inclined. KP is not the only practice that would only do SNB as part of breast surgery, it is pretty common, but as more practices adopt the TCHP regimen, and neoadjuvent chemo in general, the need for a SNB in advance to provide proper staging will become more apparent.  You are stuck in a situation where changing attitudes about chemo administration have not caught up with the facility currently available to you. 

april - the one thing I would press for if you are going to start the neo chemo at KP is the TCHP regimen.  If you stick with the MO who seems less than up to date on this maybe he can speak with the doc you saw at St. John's.  I have seen others come away from a second opinion with a specific chemo regimen request and go back to the first opinion doc and institute the second opinion's recommendation.  Maybe the St. John's doc can give the KP doc a convincing rationale.

CT spotted "2mm nodule on r. middle lobe and 2mm nodule l. lung" !!!

MO rec-- "CT scan does not show obvious cancer. will need to recheck CT in chest 3 months follow-up check small nodules in lung."

I am SO not reassured! Waiting for test results isn't as bad as waiting for tests that come AFTER chemo and after months--or not at all, at least for me.

I had a PET scan 9 days after I was diagnosed. My oncologist didn't think the cancer had spread yet, but he wanted to be thorough before coming up with a treatment plan. My tumor had several aggressive characteristics: grade 3, luminal B, and high Ki-67 (45%). I was also diagnosed at the age of 23. Plus, I'm of African descent. Breast cancer tends to be more aggressive in younger populations and in African-American women. Anyway, several of my underarm lymph nodes lit up during the PET scan. We weren't expecting that. The tumor in my breast was small (1.2 cm at the time of diagnosis). Two weeks later, I had an ultrasound guided needle biopsy of one sentinel lymph node. The biopsy came back positive for cancer. I then started chemo 6 days later.

April, your nodules are similar to what was found on mine - yours are smaller by a couple mm. They are also similar to what my brother's CT found a few years ago. His were nothing and I pretty much expect the same. I'm glad I had the scan done and will be glad to have the follow up as well but it's very unlikely to be anything worrisome.

I hope you can relax and focus on getting your treatment plan pulled together. Hang in there!

Sorry for double-post. To top off everything--my landline phone is not working and I get internet through phone. I should stop cheaping out and get decent internet!

Thanks, Hopeful82014 and SpecialK for talking me down from my freak-out! I saw my MO today and he said if I was worried, he'd refer me to a Pulmenologist (sp).

He also agree with my 2nd Opinion to give a Bilateral Breast MRI and Brain MRI (but those are relatively cheap tests). He agreed to the PET, but talked me out of it (again!!!) saying how terribly bad the radiation was! I may get Bone scan--but that hadn't appeared on the orders yet... actually... I looked at what he wrote up and I think he may have forgotten it! He actually had that down to order last week, and didn't...! I also found another aunt and her daughter who had BC, so asked about Genetic tests, and MO said he'd OK genetic counseling.

I may insist on PET after all because the surgeon won't do an SNB without Breast surgery and I'm doing neoadjuvent chemo.

What do you all think? If I'm not getting SNB-- is a PET more important to get? I've got a HER2+, and it would be good to know if it has spread, rather than just relying on ultrasound! -- WEIRD that the CT they gave me was only abdomen/hips! Wouldn't you think they'd check my breasts? Or does CT not work for that???

Wow. You really have to ASK for a lot of these tests! The 2nd Opinion oncologist was listing just about every test imaginable because he was just ultra cautious. But now I think he did that so at least I'd get SOME of those tests, using his opinion as back-up!!!

riverhorse -- MY KP MO totally agreed to everything in the outside KP letter (I paid out of pocket for that 2nd opinion). MO seemed to infer that he HAD to have the letter with all the recommendations. So I think that makes it easier for the doctor to say, "hey, all those extra tests and procedures and treatments and drugs was NOT my idea! --There is a 2nd Opinion from a respected doctor affiliated with UCLA--he made sure to note that down in his write-up of the visit!--and maybe KP wouldn't refuse or get on his case!?! He also told me to get the letter to my surgeon and maybe she'd change her mind about the SNB! --so I suspect the 2nd opinion from outside is really good leverage to have! (Which is what SpecialK said in a post above.)

KP said they'd give me in-house 2nd opinions, but strangely enough, when I asked, there were no surgeons or oncologists who could see me!!!

Open Enrollment is going on. Before I got the go-ahead for most of the stuff I wanted, I was so worried that KP was going to fight me on everything, I signed up for a PPO! It's even a bit less than KP and is a Platinum level. If not for Obamacare, I'd have been screwed trying to change carriers what with all the pre-existing conditions AND because I've had an individual plan since 2008. Only group plans count for the HIPPA regulation that says they have to accept me because of continuous coverage...!

I am thinking I will pay the one month extra at KP in order to make the transition easier and set up things after Jan. 1. (I think that's legal since they are both individual plans... not like someone else is paying!)

And in the meantime, I'm getting at least SOME extra tests--MRIs of breasts and brain. Bone scan. Genetic test.

I THOUGHT about paying for it myself if I had to! So I totally understand what you had to do! It's best to try and get the type of care you need and want. I mean, this stuff is IMPORTANT. But really, the whole heathcare system is still pretty messed up. I really wish it wasn't so hard (and expensive) to get the right treatments and tests.

crazystupidbreastcancer -- Sorry that you had that diagnosis. But great that you got the tests and better treatment for that!

I am very uneasy not knowing if my lymph nodes are involved... but at least I'm starting Chemo next week!

Welll!!! Between getting a Port Placement on Monday and First Chemo today, I paid for a PET on Tuesday--to squeeze it in right before Chemo!!!

My 2nd Op. Oncologist said it was very important, and my MO agreed to it, but my plan couldn't fit it in before Chemo today, so I just paid out of pocket.

Good news-- They didn't see any organ involvement or anything other than my one tumor... BUT... They found I had Coronary Artery calcification, "hardening of the arteries," I think! So now I have to see a cardiologist!!! The 2nd Opinion Oncologist, who got the PET results called me up just hours after I had the PET. He didn't say run right to a hospital NOW and do a stint or angioplasty, so I'm guessing it's not immediately life-threatening, just something that really needs to be taken care of--and he said it wouldn't matter to my chemotherapy, so first things first!

Most people die from heart disease... so I guess I have my pick as to what might get me!

Anyway--the PET was worth it! I am feeling a bit more positive about the cancer (may have spread--but it doesn't look like it from any of the scans--I had a CT abdomen/hip, too). But coronary artery disease--not good, but at least I can watch it and get it treated as well as I can now.

SweetHope -- I think they often do radiation if you do a lumpectomy. Even a mx might call for it under certain conditions, but usually not. But I'm new to this whole business, so I really don't know much about it. Your oncologist should be able to tell you if you need any chemo. I'm not sure what criteria they go by for that, but I know that it was recommended for me, no matter what. I'm probably having it all--chemo, surgery, radiation (maybe avoided by mx instead of lx, but maybe not), and therapy for years after...! Maybe it's the HER2+ ?

I'm glad your lung mass requires no treatment.

And I hope you can avoid some of the more drastic treatments if it's advisable!

Beatmom - (((( )))). You do have to wonder, don't you? D....n this disease, anyway.

I don't understand why PET/CT is not used more for diagnosis. I had to have a lot of other tests done before I could get the PET. After X-ray discovered the 3 cm mass, I had a CT scan, then referral to a Pulmunologist who did a bronchoscope under full sedation, then six weeks of waiting for cultures to mature, then finally the PET. Surely, the bronch cost more than the PET (there were five people involved in that surgery - only one for the PET). And, I read that radiation from it is no more than a CT scan.

Having the scan removed all my anxiety. And believe me, every time I would get a twinge somewhere, that little voice inside would ask "cancer?". The NED gave my whole family such a feeling of relief. Even if it showed some mets, at least we would know and could promptly get to work on treating it.

The procedure itself was so easy. Medicare approved it because of the BC dx. But they probably would not have without all the other tests beforehand. I would gladly contribute to a fund to help others get this procedure. April, how expensive was it? Surely, all these BC fundraising organizations could dedicate a piece of the pie for this.

I paid a bit over $1,000.00 for a PET. My healthcare would have done it--BUT they were dragging their feet and didn't approve it at first, then there were problems scheduling it--apparently they only did it on certain weeks or days and only under certain conditions! They wouldn't do it right after I got my Port, for instance (but the paid-for PET had no problem with that!).

I didn't want to delay my chemo any more, so I just paid for it, so I would have SOMETHING done before Chemo (I had an abdomen/hip CT before chemo and a MUGU, and that was the standard for my healthcare provider! -- no breast MRI, etc.).

My 2nd Opinion recommendations allowed my MO to go ahead with all the other tests--but it was already too difficult to do them in time. I'm STILL going to do as many as possible, even after chemo, just because! (I've been on a bit of a tear, trying to get stuff done thoroughly! And since I've got the go-ahead, I'm scheduling tests like crazy

The before-chemo PET was important because I'm doing Chemo before surgery and my surgeon wouldn't do an SNB without breast surgery (said it was company policy), so knowing if the nodes were involved, or anything else!, before Chemo disturbed them, was important to me and my 2nd Op MO...

Sweethope-- I was first diagnosed 11/19, but skipped surgery for preadjuvent Chemo first... but I didn't start treatment/Chemo until 3 days ago because of all the delays trying to get a treatment I thought was going to work, and trying to get tests scheduled. I know it can take longer between DX and treatment, but I just didn't want to wait any longer, so I just paid for the PET to get it done.

The idea of a fund for people to get PETs and other tests is a good one. I think most providers will do PETs, but only if you put pressure on them! And, in my case, outside PET was needed in order to get it done on time... so sometimes even when a prover agrees to a PET, it's still useful to have funds to get it done when the provider can't schedule it on time!

My provider highly discouraged PETs... The doctors and coordinators and nurses all kept saying "Oh, you don't want a PET! It's like doing 3,000 chest x-rays and can cause cancers!!!" I listened to them at first, but other doctors said definitely get one! So I figured it was worth the risk for the benefit of knowing a bit more!

I was very disappointed in my provider for taking that cost-saving, scare-tactic line! It made me hesitate to push for a PET until it was too late and I had to pay for it myself!

I'm switching heathcare providers in January, even though that will be a bit of an upheaval, and probably cost me much more. Hopefully it won't interfere with my treatment. I might have to pay more, but I'm going with the 2nd Op. MO who said I MUST get a PET before Chemo, and who pushed for all the tests I should have been getting. I don't want to be fighting to get every little thing when my hc provider is trying to cost-save! I mean, I understand that this is a business to them and that it's quite possible to do OK without all the tests, but it's also possible that not getting tests will mean poorer care. In my case, I found out that I have some coronary artery disease from the PET! It's important to know, so that can be watched (I still need to find a cardiologist!). So the PET was worth the money. --And there were no signs of cancer spread! I still want some other tests to make sure, but at least THAT fear has eased a little!