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PET scans after treatment

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radishhub
radishhub Member Posts: 5
edited November 2019 in Stage III Breast Cancer

Hi, I have stage 2 or 3 depending on the year-guidelines lobular invasive breast cancer. I thought after radiation, chemo, and surgeries (bilateral mastectomies with 2/19 lymph nodes positive) that I would have some sort of final imaging study. Instead, my doctor said, "our intent was to cure you; consider yourself cured. We don't do imaging because they are all normal and just have a high risk of false positives." I am having a hard time with closure. Also, every mystery bone ache or pain or lightheaded bout and I feel like it's metastases. Advise on how to get a PET scan?

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  • francesca30
    francesca30 Member Posts: 63
    edited September 2019
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    I would like to know about this too

  • mammalou
    mammalou Member Posts: 293
    edited September 2019
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    I’ve had many scans when worries come up. Unfortunately, I don’t think a PET scan can cure the worries, you just have to learn to live with it. I just had a pet scan because of swollen nodes. The nodes were clear but the pet showed something in my healthy breast. This led to an mri which showed nothing in the healthy breast but did show something near my chest wall in my cancer breast. Now I have to worry about that for 6 months when I have a follow up mri. I do like that I get surveillance with scans but there are a lot of false positives.

  • lexica
    lexica Member Posts: 138
    edited September 2019
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    Welcome to the new normal. I second what mammalou says; the PET may help ease your worry for a time, but i dont think it ever goes away. When i have a symptom for 2 weeks+, I tell my MO, and he usually sends me for some type of test, either bloodwork or scan. Even with that, I still haven't felt any type of closure and I still worry pretty much daily and at every ache and pain. From what I understand, most oncs dont do routine scans unless it's stage 4. The idea is to not expose us to additional radiation and worry. There are other things you can ask for, too...tumor markers, which are unreliable apparently, and CTC test. I went on my own to get a CTC test since the test it still in its infancy, and that was probably the thing that has given me the most peace (following the study that said a negative result showed 98% chance of being disease free in 2 years). Also, you can look into clinical trials. That may help. Sorry there isnt a better answer out there for us, but we're here and hopefully can help navigate the new normal with you.


  • trinigirl50
    trinigirl50 Member Posts: 158
    edited September 2019
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    Lexica

    How much did you pay for your CTC test if you don't mind me asking and where did you get it done? I would like to do this too.


    Thanks

  • Spoonie77
    Spoonie77 Member Posts: 532
    edited September 2019
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    Can I ask what is a CTC test? I haven't heard of that one. TIA.

  • trinigirl50
    trinigirl50 Member Posts: 158
    edited September 2019
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    Circulating Tumour Cells test. Its been around for awhile, but they haven't figured out how to apply it to standard of care as yet. It lets you know if you still have tumour cells circulating. There have been studies done that show that if a person has CTCs in the body 5 years after diagnosis (with NED) then it is prognostic. Its not definitive, but those with higher number of CTCs were more likely to reoccur, metastasize.

  • spookiesmom
    spookiesmom Member Posts: 8,168
    edited September 2019
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    I had one scare in 7 years, my pcp sent me for mri. Other than labs, there was no mention of scans. Until past January. Mentioned to mo something funky was going on the non cancer side. PET/ct stat. It was back. So just had another scan this month.

    It takes a while for your fear of reoccurrence to settle down. It never goes away entirely, but does get easier to deal with.

  • trinigirl50
    trinigirl50 Member Posts: 158
    edited September 2019
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    Also the CTC test is more likely to pick up on evidence of disease before anything shows up in scans. But once again, they aren't sure how to apply that to standard of care. Unless you have an ONC who operates outside the box and is willing to change up things based on CTCs. My ONC was willing to do the CTC test when we had nothing show up on scans and my tumour markers went up. But before we got there, my TMs went back down to normal (I had bursitis). However I have moved countries so am no longer with original ONC.

    It would be scary to do it and find that you did have CTCs (although that doesn't mean it will definitely lead to mets) but it might offer peace of mind to those constantly worrying, if the test came back as negative. Quite frankly I would love to do it. And I plan to do it once I get to my 5th year.


  • Spoonie77
    Spoonie77 Member Posts: 532
    edited September 2019
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    Ok thanks for the clarification. I have heard of CTC in that case but none of my MOs have offered it to me.

    So just to clarify there is no standard of care for the CTC as of yet except for after 5 years post dx?

    I meet with my new MO tomorrow and will add this to my list of questions. Maybe she will be one of those gems that as you say thinks outside of the box. :)

  • trinigirl50
    trinigirl50 Member Posts: 158
    edited September 2019
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    Yes CTCs are not standard of care. It's not standard of care for 5 years post diagnosis either.


  • trinigirl50
    trinigirl50 Member Posts: 158
    edited September 2019
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    Sorry I meant to say CTC tests (not CTCs)

  • lexica
    lexica Member Posts: 138
    edited September 2019
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    trinigirl - I got a kit from Biocept and I think it was somewhere around $500. They give a bit of a discount if you pay the whole purchase price. It was a little difficult logistically bc you have to get your MO to sign off on it and someone to draw the blood.

  • Spoonie77
    Spoonie77 Member Posts: 532
    edited September 2019
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    Did you find it helpful Lexica? This Biocept kit is a CTC, aka liquid biopsy using our current blood?

    Did your MO sign off on it? If so, what were their thoughts?

    Thanks in advance for the info.

    I'm guessing this is the kit/company you are referring to: https://biocept.com/patients/

  • imagine
    imagine Member Posts: 96
    edited September 2019
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    did you receive results? How is this different from tumor marker blood test

  • Eily333
    Eily333 Member Posts: 16
    edited September 2019
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    Hello, I just did a search for conversations on CTCs and found this thread. My experience (in Canada) I to a Naturopath who had experience working with cancer patients. She gave me good information regarding exercise, diet, supplements, fasting....BUT she asked if I wanted to do the CTC test..so I did it and it came back Positive for 40 Cytokeratin CirculatingTumour cells!

    The Naturopath is very concerned and wants me to do Alternative therapies. I emailed Biocept to ask how reliable the test and they said it was a concerning level. I went to my Oncologist ...who doesn’t use the test and she offered me no explanation for the high level. I’ve scoured the Internet with no answer. The Oncologist suggested I get a BONE and BODY CT SCAN ...to ease my mind..the CTs Scans show NO evidence of disease..at the moment.

    Oncologist says I’ve had all the treatment she would give me..so my only option is to try to forget it..or do something alternative..

    Has anyone done anything Alternative?? Thanks eileen

  • trinigirl50
    trinigirl50 Member Posts: 158
    edited September 2019
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    Thank you Lexica for the info and Spoonie for the link. Eily333 I am sorry to hear about your result. Might your ONC not think about switching up your meds, or adding Fulvestrant etc? Or Xeloda? I noticed many newer posters have Xeloda even though it isnt standard of care. As CTC tests arent part of protocol your Dr probably wont suggest any other treatments based on those test results. Maybe you could try a Cancer specialist hospital? Somewhere more cutting edge? Or a more think outside the box ONC? Good luck. I dont believe in altenative therapies but it cant hurt to up your exercise level. Check on Tectronic shift (a poster on this forum) she has links to articles about exercise actively killing off CTCs.

    good luck

  • trinigirl50
    trinigirl50 Member Posts: 158
    edited September 2019
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    Barteellis

    CTC tests measure if you have circulating tumour cells in your blood.

    Tumour markers are less specific and levels can be raised due to causes other than cancer, or they can remain normal even when cancer is present.

    I know you have a follow up scan in October. I hope nothing has changed scanwise and your markers stay the same, or better yet, go back down. Good luck.

  • Spoonie77
    Spoonie77 Member Posts: 532
    edited September 2019
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    Trini - I tried looking up that poster you mentioned. Couldn't find her in a site search. Could you find a post of hers and link here? I'm intrested in those links as my new MO was speaking to me about this very thing this morning. I can't take any systemic endocrine therapy so all I have now is exercise and weight loss to bring my 28-35% risk down. TIA

  • lexica
    lexica Member Posts: 138
    edited September 2019
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    Spoonie, yes it was the liquid biopsy, and my MO had to sign of off on the form for BIOCEPT to process it. It did ease my mind a bit since my result was zero. I had one oncologist tell me to wait until I was done with active treatment as tumor cells shed heavily during and shortly after treatment. So I waited until about two months after radiation was finished. There is a lot of research out there supporting the idea of CTC testing but it's still not approved by the FDA as a diagnostic test. Although I work with laboratory personnel at the FDA and a few of them are doing regulatory research on this so that's good news, I guess.

    My oncologist who is at the NIH and spends all but one day a week reviewing research is hopeful about the CTC test but hasn't seen enough evidence for him to believe it's a good prognostic indicator yet. I tried to read his face when I told him the result but that man is a stonefaced MO. I'm sure lots of them are that way...

  • lexica
    lexica Member Posts: 138
    edited September 2019
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    My MO did say there was probably no action they could take qith the results...assuming they were positive. I imagine I could have pushed for more routine Imaging and maybe more blood tests though.

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited September 2019
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    Maybe this is the exercise article you are referring to?

    https://www.fasebj.org/doi/abs/10.1096/fasebj.2018...

    This is a very interesting conversation, ladies.

  • lexica
    lexica Member Posts: 138
    edited September 2019
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    That is a very interesting article. Forgive my ignorance, but it seems to be saying that weightlifting/ resistance exercises are key here and not cardiac/ endurance exercises... right? I'm sure both are beneficial, but I have been really focusing on getting my endurance back! I guess I should change up my routine if I'm to buy in to this research...

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited September 2019
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    The way I understand it is that you need to raise your HR

    "Resistance exercise sufficient to raise pulse rate 50% to 120..."

    for at least 7 minutes in order for 100% of blood to circulate. So whatever resistance exercise you can do to achieve that result. But I am not a medical professional or a researcher, just an exercise addict.

  • Spoonie77
    Spoonie77 Member Posts: 532
    edited September 2019
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    Thanks Lexica for the info on the CTC test and how it worked for you. I'll stash it away with the other questions to ask my MO at my next appt.

    Alsob thx so much for sharing that study Home Made Salsa! That's very encouraging info :)

  • trinigirl50
    trinigirl50 Member Posts: 158
    edited September 2019
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  • trinigirl50
    trinigirl50 Member Posts: 158
    edited September 2019
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  • mpv459
    mpv459 Member Posts: 83
    edited September 2019
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    I just finished chemo.. My onchologist has offered to request me a bone scan at the end of radiation if I feel it will give me peace. She does not believe that it will show anything... I have many weeks to think about it but I think it might be worth doing..I would still be afraid something might show up... What do you guys think??


  • lexica
    lexica Member Posts: 138
    edited September 2019
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    It may give you some peace of mind. I was happy that my MO put a PET scan in for me after treatment. It helped. There was still worry, but it helped.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,747
    edited September 2019
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    Hello,

    I am stage IV, essentially de novo. I want to address the issue of PET scans. Initially, I was scanned every 3 months, then every 6 months and now annually, unless I have worrisome symptoms. It was difficult for me, at first, to move to longer intervals between scans but I now realize the value in this.

    - Scanxiety= stress Many of us experience stomach churning stress as our scan dates approach and even worse stress as we wait for results. Personally, I didn't realize the negative effects this had on me until I began having fewer scans.

    - Radiation exposure- In hindsight I now realize that if I had continued having scans every 3 months over the past 8 years I would have had 32 PET scans by now. Yikes, that's a lot of radiation exposure. Both my mo and ro pointed this out early on as I am considered oligo metastatic. They considered an every 3 month schedule to be far too much exposure and I now agree.

    - False positives- Yes, they do happen and they cause stress with a capital S! Not to mention resultant biopsies which create even more stress.

    Don't misunderstand me. Scans definitely have their place, but more is not necessarily better. They are not as benign as a blood test, for instance. If you have symptoms, definitely have your mo consider a scan but regular routine scanning is not always helpful. As a matter of fact, there is a school of thought that finding mets early does not prolong your life, you just know about it earlier! My single bone met was an accidental discovery shortly after my bmx (very long story), and I believe I fall into that category. Wishing you all the best

  • muska
    muska Member Posts: 224
    edited September 2019
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    Continuing on what exbrnxgrl said above, I think studies have showed that finding mets early does not prolong life. I am sure however, it does increase anxiety which greatly influences quality of life. Everyone deals with anxiety differently. Clean PET might reduce cancer anxiety for a while but doesn't it increase anxiety about potential risks of radiation exposure?

    BTW, I have not had a PET yet - they didn't do it before or after treatment. I considered CTC test soon after treatment ended but easily let this idea rest after my oncologist told me they don't actually know what to do about the results. I take my meds (anastrozole + vit D), get some blood work twice a year, talk to my MO about what's new in the BC field twice a year and am happy I don't have to do more or worry about what might happen down the road that I have no control over anyway.

    Editing to add: CTC might be helpful to monitor metastatic disease but for those who don't have proven mets yet knowing there are circulating tumor cells might not change much in treatment.

    Best to all