Newly diagnosed and don't want a PET or Bone scan

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Nulyte
Nulyte Member Posts: 62
edited September 2016 in Just Diagnosed

Hi, I'm Michelle and 2 weeks ago I was diagnosed with Stage 2b breast cancer ,ER/PR + and HER2 - other than that 3 opinions later I know nothing else. I'm horribly frustrated we didn't go with the original surgeon who ordered the biopsy because she bluntly called and told me," you have cancer " and hung up. We have met two oncologists and I can't even get them to order a Mammaprint or oncotype DX ... At this point I have read many things about PET and bone in early staging and high false positives. We think there is one node involved but no other symptoms. Any advice? I've already decided on bilateral mastectomy so I did deny another ultrasound of the right breast..

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  • etnasgrl
    etnasgrl Member Posts: 650
    edited September 2016

    You won't get the Mammaprint or Oncotype test done until after your surgery. They don't do that test on the biopsy sample because it's only a smart part of the tumor. They wait until after the tumor has been removed and then send off a section of it for testing.
    As for the PET and/or bone scan, is your doctor suggesting one? To the best of my knowledge, that is not usually done. As a matter of fact, I don't know of any early stage girl that has gotten one. (Many times a breast MRI is done prior to surgery. The MRI can show things better than a mammogram which is why it is done. This way the surgeon can know what he or she is dealing with prior to surgery.)

    My best advice would be to go the oncologist you liked/trusted the most and determine your treatment plan. Once you do that, you can move forward.

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  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited September 2016

    So sorry you're going through this but it sounds like you've got a good grip on what's going on. Glad you found us here.

    When I was diagnosed my surgery was scheduled soon after the biopsy. All treatment decisions came after the surgery. Your surgeon will remove the sentinel nodes and if they see cancer they will take more out until they are happy they got it all. My surgeon said she wouldn't order the Oncotype until after surgery because the test is dependent on how many nodes are positive.

    I met with my Oncologist a month after surgery and she was happy to see I had the Oncotype report and I'm sure that influenced her treatment decisions.

    So, no rush on the tests, get your surgery behind you and go from there.

    None of my Drs have ever recommended PET or bone scans. If yours do, then question why and ask if it would be detrimental to skip them. They are just tools to be sure you have the best possible outcome.

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  • Nulyte
    Nulyte Member Posts: 62
    edited September 2016

    Hi Ladies

    I've had a surgeon recommend surgery , then chemo and another recommended neoadjuvant chemo and then surgery and the third said whatever you want .... I'm absolutely confused. I was hoping that at least two would have sort of the same plan.... Is this the norm?

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  • pennsygal
    pennsygal Member Posts: 346
    edited September 2016

    Hi Michelle -

    You are at the most confusing and stressful stage right now, but it will get better. When I was diagnosed, I had a small tumor and one visible lymph node on mammo and ultrasound. After initial biopsy, they recommended an MRI to check for additional lymph nodes, which was smart, because I had several level I and level II nodes light up. That switched the treatment plan to neoadjuvant chemo and then surgery -- I was originally scheduled for surgery first. It is my understanding that if you have a positive node, they will not do oncotype. (If I'm wrong, please someone correct me!)

    I then had both a CT scan, and bone scan - to see if I had any involvement beyond the breast and local nodes. Fortunately, I didn't. This gave me peace of mind, but also informed the docs as to the best treatment plan - to shrink the tumor and stop the spread in the nodes. Ultrasound is kind of a blunt tool - it doesn't always show everything that is going on.

    Can I ask why you don't want the PET or bone scan?


    Barb

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2016

    Oncotype Dx is appropriate for ER+/Her2- patients with 1-3 positive nodes. Some oncologists don't bother to send node-positives for Oncotype because they so strongly advocate for chemo for those patients, however, there are a number of node positive patients here on BCO who had low Oncotype scores and elected no chemo.

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  • Nulyte
    Nulyte Member Posts: 62
    edited September 2016

    I am against a bone scan because I have had some previous fractures and bone issues. I was told they will light up and since it's a CYA for the MD even if I say they are old they will by law have to follow up and I just don't want scans every 3 months for no reason... Also ASCO recommends early stage I and II not have Pet , CT or bone because of the high false positives and it doesn't change the treatment plan.. So I'm exactly at that confused stage. I am having a bilateral MRI next Monday ...

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  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited September 2016

    Hi Nulyte

    I was stage IIb as well. I did have a pet scan and a bone scan (because I had one positive node). I was scared to do these tests and felt like I'd hit rock bottom having to do them. However, I did do them and waiting for the results was not fun, but I am glad I did them now. They were clear and it gave me piece of mind.

    Nancy

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  • LizM
    LizM Member Posts: 963
    edited September 2016

    Nulyte,

    I was diagnosed with stage IIb 11 years ago, and I did not have a bone or PET scan when diagnosed. It is my understanding that the standard of care for early stage diagnosis is not to conduct any scans unless they suspect it has spread further than the lymph nodes, or if you have unexplained pain. They are normally done for those diagnosed with a later stage. I was treated at Johns Hopkins, and they follow the ASCO guidelines for standard of care. You may want to speak with your oncologist and ask why you are having those scans when they suspect early stage bc. They can cause unnecessary worry in my opinion. Hang in there, and as others have said, this is the hardest part when you don't know exactly what you are dealing with. It will get better when you start treatment. Wanted to add that I also chose to have a bi-lateral and was able to skip the MRI on the other breast. Had bi-lateral with reconstruction, Dose dense AC/T chemo, radiation (for one positive node), oophorectory, and 10 years on Femara.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2016

    I respectfully disagree with LizM's post above. There were no real expectations that it had spread beyond lymph nodes, and I had no pain. But I got a PET scan anyway. Perhaps because I DID have + nodes? However, not one doc claimed they suspected it had spread anywhere else. They were, I'm sure, simply ruling out a possibility. So perhaps they are ordered simply IF there are + nodes detected....


    Anyway, was I scared for the results? Yes. But I didn't want to guess. And I followed the directions about not eating any carbs, etc. before the test, since they can also cause false + reads. Something about the sugar interacting with our bodies that cause places to light up when there's truly nothing wrong.

    I nearly fell on the floor with relief when my MO called me with the good results post-PET scan.

    Claire in AZ

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  • Nulyte
    Nulyte Member Posts: 62
    edited September 2016

    Thank you guys! Oh and the Mammaprint I was pushing for that prior to surgery so we could guide the chemo to a more targeted approach and not standard approach. Especially doing neoadjuvant one MD told me she always recommends before starting but unfortunately she was only my port insertion physician since I requested an arm port. Maybe I will call her office and see if she will take me on also as a surgical patient

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  • LizM
    LizM Member Posts: 963
    edited September 2016

    ASCO guidelines clearly state that scans are not necessary for early stage breast cancer, stages I and stage II. I understand Nulyte's concern and therefore see no problem with her questioning why she needs them done at this time. There are still some doctors out there that do not follow ASCO guidelines, and perform PET scans for early stage diagnosis. For stage III, which is 4 or more positive nodes, PET scans may be the standard of care. Nulyte, where are you being treated?

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  • Nulyte
    Nulyte Member Posts: 62
    edited September 2016

    LizM I think we have decided to go with Tampa Moffitt Cancer center . When I spoke with the surgeon she stated the MRI was most important and I have that scheduled. It was a NP who called back and said she wanted , the NP, a PET but my insurance denied and then ordered CT and Bone. After doing my research I'm also fine with CT and chest X-ray just not bone. Sometimes I feel they look see insurance and just start ordering away ....

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  • Lou10
    Lou10 Member Posts: 332
    edited September 2016

    Nulyte -- I had a breast MRI and chest x-ray before surgery. Because positive nodes were found, I also had an abdominal ultrasound and bone scan to check for mets prior to chemo. I've had additional bone scans over the years but only when I've had new symptoms.

    I've had back surgery and I have widespread degenerative problems in my spine and major joints, so there is a great deal of uptake on my bone scans. Fortunately there haven't been any suspicious findings regarding mets; the uptake has been attributed to degenerative changes.



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  • pennsygal
    pennsygal Member Posts: 346
    edited September 2016

    Thank you, Special K, for clearing that up!

    I was initially staged at IIA or B, and then graduated to III after MRI showed additional nodes. I also have had several fractures in my feet, and had a bone biopsy several years ago, in addition to a hemangioma in my shoulder. They saw all those things on the scans, but were able to differentiate from mets. I have not had those scans repeated. I was treated at UPMC/Magee in Pittsburgh.

    I agree with Claire and Nancy - the relief of clear scans is worth the worrying about results. And, it helps inform treatment decisions - no two cases are exactly alike.

    Nulyte, good luck with your MRI. You are being bombarded with information, testing, decisions, etc. which for you is all new. It really helped me to remember that the docs do this every day.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2016

    Actually, the classification of stage III and positive nodes isn't correct per Liz above. Stage is also assigned by tumor size and distant metastasis. I had 6/11 + nodes but the lump was 2 c. and wasn't anywhere else so I was staged as stage II. Had it been bigger, it might have been a different stage. From cancer.net:

    Stage IIA: Any one of these conditions:

    • There is no evidence of a tumor in the breast, but the cancer has spread to the axillary lymph nodes but not to distant parts of the body. (T0, N1, M0).
    • The tumor is 20 mm or smaller and has spread to the axillary lymph nodes (T1, N1, M0).
    • The tumor is larger than 20 mm but not larger than 50 mm and has not spread to the axillary lymph nodes (T2, N0, M0).

    Claire in AZ

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2016

    kayb, all I can do is review what's printed on my pathology report, which reports stage II, etc.for my own dx.

    I was pointing out that simply having + nodes doesn't necessarily classify a patient automatically as stage III, as a previous poster claimed, above. :)

    Sometimes those numbers are ALL important.

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  • meg2016
    meg2016 Member Posts: 287
    edited September 2016

    Nulyte- After my diagnosis I was trying to get into a trial, and it required a bone scan and CT (no PET.) So I did have those. On the bone scan they were able to tell the difference between degenerative and metastasis, I was relieved to only have degenerative issues found. So I would't worry about the bone scan from that perspective.On my CT, they did find some things which didn't look like metastasis, but I will have a follow-up CT. It seems like it is more difficult to determine a lung nodule or other non-specific liver finding, etc. on a CT from metastasis. Having that baseline before treatment will definitely help to determine any changes down the road. I don't regret having either of those. I, too, got a first opinion from an Oncologist who immediately ordered a PET scan, but I ended up not using her and my current MO doesn't think its as useful as the other tests in my case.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited September 2016

    My mom, sister and I are all survivors. My sister and ALL of her doctors thought she was Stage 2 going in - even afer scans and

    node biopsy before surgery. Well, to everyone's absolute surprise, instead of 2 to 4 positive nodes, she had 13 positive nodes!

    Her nodes were very small and no one, I mean no one, suspected this. She was thankful she had the scans behind her so she

    did not have to repeat them at that point.

    Also, when I was diagnosed, I knew I had a few positive nodes. My doctors ordered scans as I had a very large tumor. I ended

    up having 9 positive nodes and other areas that were "hot spots" in my bones which showed up on bone scan. Thankfully, those

    turned out to be nothing, but I sure was thankful I had it done and behind me.

    I'm not telling you all of this to alarm you as I know you are already alarmed. Just telling you because although scans are always

    extremely anxiety producing, sometimes it is better to have the for peace of mind.

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