Did anyone have a CT or PET scan early on?

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Shellies
Shellies Member Posts: 55
edited December 2014 in Stage II Breast Cancer

OK...  My LATEST paranoia is that some women get full scans early on.  I did not, and this freaks me out!  SHOULD I have had a CT or PET scan prior to chemo?!

I met a girl today who shared that her mother had a PET scan that detected some brain mets.  They treated the brain tumors simultaneously with the breast cancer. 

I had the obligatory MRI prior to mastectomy... but that's it!

 

-Shellie

OH!  And WHEN will I stop the incessant paranoia of cancer?!  SICK of it!!!

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Comments

  • Leslienva
    Leslienva Member Posts: 489
    edited November 2014

    I had a CT scan and bone scan after being diagnosed. I think they usually do at least these two to check for any spread outside the breast

  • mmtagirl
    mmtagirl Member Posts: 509
    edited November 2014

    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.

  • Bippy625
    Bippy625 Member Posts: 890
    edited November 2014

    hi, i had bone scan mri, and cts done prior to chemo, no pet scan. I think my insurance did not cover it..

  • Tinkerbells
    Tinkerbells Member Posts: 211
    edited November 2014

    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.

  • jenjenl
    jenjenl Member Posts: 948
    edited November 2014

    I had MRI, CT and bone scan to baseline. They did this bc they had suspected I would have had positive axillary nodes. As far as routine scans, my MO doesn't do them but is willing once I bring specific pain to his attention. He's selective so will only do scans were the pain is vs full body. I struggled for a whole year with his style of preventative or surveillance care but have come to accept it since he does take action if I continue to request.

  • momand2kids
    momand2kids Member Posts: 1,508
    edited November 2014

    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.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2014

    PET scan before chemo but I had + nodes, and my oncologist is VERY careful.

  • linzer
    linzer Member Posts: 164
    edited November 2014

    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.

  • CassieCat
    CassieCat Member Posts: 1,257
    edited November 2014

    I think because they knew or suspected node involvement, I had an MRI, CT with contrast and PET/CT all before starting chemo.

  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited November 2014

    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.

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited November 2014

    I had a combined pet/ct scan before chemo and a bone scan. I had one positive node. I did not however have an MRI. I finally asked my onc why and she said that my breasts are not that dense and had the radiologists mentioned it she would have. She also said that MRIs give a lot of false positives leading to unnecessary biopsies. Ok I guess.

    Nancy

  • CassieCat
    CassieCat Member Posts: 1,257
    edited November 2014

    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.

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited November 2014

    Really? I thought MRIs were for dense breasts? Hmmmm I still wonder if I should have had one because I honestly don't trust mammos anymore.

    Nancy

  • Shellies
    Shellies Member Posts: 55
    edited December 2014

    UGH!  It seems like most of you DID have CT / PET scans!  I wonder why I didn't...???  Low oncotype score?!

    ...another question for my onc! 

    <quietly freaking out>

    We did an MRI to check other breast and node involvement... MRI missed the 1 positive node...      :(

  • april25
    april25 Member Posts: 772
    edited December 2014

    Mammo didn't find my cancer in March. I found lump through self-exam and it was November and already IDC and 3 cm... and I have small breasts and no other lumps, and dense tissue... So, yeah, I don't trust mammograms!

    I was just diagnosed last month. So far no treatment. I have had one abdominal/hip CT scan.

    I just got an outside KP (my carrier) 2nd Opinion --at a fancy center in Los Angeles and that oncologist said that I should get:

    PET--full body

    MRI- Brain (or was that the PET? gah--can't read my notes!-- do MRIs do brains?)

    MRI-Body (breasts especially --so far I've had no mammo/ultra on my OTHER breast)

    Bone Scan

    Tomorrow I'm going to be trying to get Kaiser to do these for me. It's been nearly 3 weeks since my diagnosis, so this is getting kind of crazy-making.

    I don't have any treatment lined up because I want to go with the 2nd Opinion, which differs from my doctors so far!!!!

    Other doctors have said the scans above are "standard" for them (outside of Kaiser).

    Since I'm HER2+ I'd really like to know if the cancer has spread. Ultrasound didn't see anything in nodes, but now I'm feeling a swelling under my arm!!! aaaaggh.

  • marley2
    marley2 Member Posts: 58
    edited December 2014

    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.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2014

    Hi!

    I had a PET scan before beginning treatment. I believe that I got it because I had locally advanced cancer (5 cm mass), with evidence of at least one node involved (fine needle biopsied). Plus, it is triple positive, fast growing cancer (Grade 3). The PET scan was used to see whether my cancer had spread elsewhere in my body. Fortunately, it just confirmed what we already knew. Now that I've finished neoadjuvant chemo, I had my second PET scan yesterday. I think the issue here is more the size of the lump (which has shrunk), its location, nodal involvement, and whether or not the surgeon thinks he can get clear margins. I will then have to decide on lumpectomy vs. mastectomy.

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited December 2014

    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!

  • CassieCat
    CassieCat Member Posts: 1,257
    edited December 2014

    Nancy, that's what I thought too. The timing of MRI's relative to your monthly cycle can have an effect, and that may have happened with me. Regardless, for follow up scans later this month, after I finish chemo, my MO is requesting a PET/CT and an ultrasound. Those together gave the best picture of what was going on inside me.

  • april25
    april25 Member Posts: 772
    edited December 2014

    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...

    ----------

    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
    suemed8749 Member Posts: 1,151
    edited December 2014

    I had an MRI before the first lumpectomy (which did not show the extensive DCIS and a second, smaller, IDC tumor), then after the re-excision, I had a PET/CT ordered by my MO before a uni mast and beginning chemo. I also had a PET/CT after finishing Herceptin. The stress of these tests was far worse than surgery/chemo, but I appreciate my MO's desire to know exactly what we were dealing with before beginning treatment (to the best of the ability of the imaging.)

    Wishing you all the best - From this site, I have learned that doctors/insurance companies handle things very differently. My MO has gone off on a few rants about his plan sometimes being different from that of an insurance company (although I had no problems in that area.)

  • april25
    april25 Member Posts: 772
    edited December 2014

    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!

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited December 2014

    Opinions are divided in the onc community over the value of PET/CT scans for early stage bc patients. It is not standard of care or procedure and does expose one to radiation. Also, your doc may order one but if your insurance won't cover it, you have a fight on your hands (they are enormously expensive). Even at stage IV, I have gone from PET scans every 3 months to scans every 6 months because of concerns over radiation exposure.

  • riverhorse
    riverhorse Member Posts: 126
    edited December 2014

    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.

  • fizzdon52
    fizzdon52 Member Posts: 568
    edited December 2014

    I think those of us with ILC tend to be given more scans as our cancers aren't usually found until they are quite large, because you can't see lobular on mammograms easily if at all. That's my reasoning anyway. I have had 2 MRI's in the past year and a CT scan shortly after diagnoses

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited December 2014

    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

  • riverhorse
    riverhorse Member Posts: 126
    edited December 2014

    Fizz don

    Not sure I would agree regarding ILC. I have never had a scan and hopefully never will need one. However, given the sneaky nature of ILC I would think a clean scan would be even less accurate in terms of detecting mets.


  • fizzdon52
    fizzdon52 Member Posts: 568
    edited December 2014

    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.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2014

    april - many surgeons will order an MRI prior to surgery because it is another diagnostic imaging tool that potentially provides different information than a mammogram or ultrasound.  My surgeon ordered a pre-surgical MRI since my 2cm mass was not detected by mammogram, only by ultrasound. He wanted to check the both breasts before making a lumpectomy/uni mastectomy/bi-lateral mastectomy recommendation.  This was the same reasoning he used for doing BRCA testing - I am adopted and had no access to family history.  I did not have surgery until those results were in because they would have dictated the decision making if positive. The MRI did not detect my 6mm positive node, the other positive one would have been too small for any imaging to see, and it is more sensitive than ultrasound.  PET for early stage BC is not universal, some early stage Her2+ patients have them, and some don't - it is not considered standard of care as far as I know.  I did not have a bone scan or a brain scan or any CT sans, only PET, and I had it after surgery. On SNB, everyone except a very few with known pure DCIS get SNB done - that definitely is standard of care and not at all unusual.  I think the reason PET is stressful for many is that this type of scan is looking for cancer that has left the breast and loco-region (nodes) - PET looks for cancer that is the demarcation line between early stage breast cancer and stage IV.

  • april25
    april25 Member Posts: 772
    edited December 2014

    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...!

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