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Remission for stage 4 - SUV levels

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sime21
sime21 Member Posts: 2

Hello everyone- while I have been reading these boards daily, this is my first post. Thank you to this wonderful community for lifting me up when I needed it most, your kindness and support and stories have meant a lot during this process.

I was diagnosed in January of this year as stage 2b (er+,pr+, her2-) at the age of 32. After a masectomy and before chemo, I did ivf to preserve my eggs and the egg retrieval surgery caused internal bleeding that sent me to the ER and additional tests showed a lesion on my sternum. I was diagnosed as stage 4 and my oncologist recommended aggressive treatment (4 rounds of AC, 12 rounds taxol, followed by 30 sessions of radiation)with a small chance of remission.

I completed chemo in early august and redid my pet scan and the SUV uptake was reduced (21.1 down to 3.6) in my sternum and the rest of my nodes are clear. Next up is radiation.


I’m wondering - how many of you ladies were in the same position and did radiation help get your SUV levels down further? I read the pet scan results in the portal but haven’t talked to my oncologist yet - wondering if this is good news or should chemo take SUV levels down to 0? Not sure if I’m responding as expected or if this isn’t ideal.

Please share your stories, I appreciate every word.


Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,747
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    Sime21,

    Welcome, though we’re sorry that you’ve joined us. I will be honest and say that after ten years and more PET scans than I can count, I no longer exam each report as minutely as I oncedid. I also had a single bone met, upper femur. I am considerably older than you are (my younger dd is 31) and have only taken AI’s as well as having rads to the bone met itself. I was not in any pain but my ro felt that blasting it would kill it off, which it did. The only thing I look at is whether there was any uptake at all. I’m sorry I can’t address your question more specifically but hopefully someone will soon. Take good care and post whenever you feel like it.

  • olma61
    olma61 Member Posts: 1,016
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    hi sime21 - I had numerous bone mets, not just one and after my initial six months of chemo / targeted therapy, my scan results were similar to yours. Most of my bone lesions showed no hypermetabolic activity thus no SUV was reported. The few remaining active mets had low metabolic activity - one was SUV max 3.6 I believe. The other two were described as barely above baseline.

    Next scan was completely NED.

    Then I had a single lesion become active again. I had radiation and yup, killed tha met.

    Been NED for two years since the radiation.

    I am not an MD nor a psychic, 😉 but...based on what I’ve learned so far as a patient, your odds look pretty good with a single bone met and a good initial response to chemo.

    Best of luck!

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    Sime21, you asked , “ should chemo take SUV levels down to 0?“ My understanding is that SUV will not be zero anywhere because the body has background levels of metabolic activity. The PET scan is to detect areas where the activity is higher than the background because of more avid uptake of the radioactive glucose tracer by cancer. In other words, it is not the absolute SUV number but how it compares to non-cancer areas that matters.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    It sounds like your onc is approaching your case as oligometastatic, going for getting you to NED, no evidence of disease. (Everyone wants to dance with Ned!) You might want to search the term oligometastatic and read about it.


  • sime21
    sime21 Member Posts: 2
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    Thanks exbrnxgrl for your post, I'm coming up to speed on all the tests, terminology, what to look for, etc.

    Thanks so much Olma61 for sharing your story, that brings me so much hope!

    Thank you Shetlandpony - that’s so helpful, I’ll read through the oligo threads.

  • cowgal
    cowgal Member Posts: 625
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    Sime21 - I was diagnosed at 46 with stage IIB in 2010. I was diagnosed as stage 4 in September 2019 with a positive lymphnode and a lesion over 7 cm long on my sternum. I went through chemo and then had a PET scan that showed that my lesion had only shrunk a little bit. I had to take that some response was a win and chemo does remain in your system quite a while so it is not through working when you reach your last session. After the PET scan, I did some pretty intense radiation in the sternum area because the radiation oncologist believed I could be an oligmetastatic and that this was the chance to kill the cancer and she told my medical oncologist what she was doing and he agreed. My next scan after that was July 2019 and I reached NEAD! I have remained NEAD since. I have a scan coming up soon and I won't lie, I get nervous with every scan that it will come back.

  • moth
    moth Member Posts: 3,293
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    Sime21, oh you're in a good position for an oligo presentation & aggressive treatment!

    just wanted to comment that the word remission is hardly ever used in breast cancer terminology (it is still sometimes used in hematological cancers like leukemia or lymphoma...) We tend to use the NED (no evidence of disease) and NEAD (no evidence of advanced disease) terminology. There's a stage 4 NED thread here you might want to check out: https://community.breastcancer.org/forum/8/topics/...


  • cowgal
    cowgal Member Posts: 625
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    Moth - I always thought NEAD meant No Evidence of Active Disease with the understanding that if cancer cells are present that they are undetectable at this point. Also, my medical oncologist did tell me that I could consider myself in remission.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,747
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    Yes, I thought the A stood for active as well. My bone met is still visible on imaging but is not metabolically active.

  • moth
    moth Member Posts: 3,293
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    interesting cowgal. Doctors here will not use remission & there was a long oncology twitter thread a while ago where oncologists said they didn't use the word except in heme. After stage 1 breast cancer treatment they definitely won't use remission

    advanced v active is an interesting distinction too. bottom line I guess it's "we don't see anything now" but we need a more fancy way of saying it

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    But "We don't see anything now" is tricky. We may see something on the CT, but not on the PET. By NEAD I mean No Evidence of Active Disease, because the CT portion of the PET may show the shapes of tumors (evidence of disease) but these tumors have no uptake on PET because they are not active but dead or asleep, and that matters a lot. It can take a while for everything to get cleared out.

  • olma61
    olma61 Member Posts: 1,016
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    I also thought the A meant “active" for the reasons SP describes.

    My doctors never say anything but “stable" “good" “you're doing great" but as I said once before, when I got a look at notes from my chart, they do indeed note that a scan result is “NED" where appropriate.

    One of my scan reports does say “no evidence of active disease", in the report itself,not abbreviated.

    When I hear “remission" I always think of it as the general public's way of understanding cancer that is not currently active


  • mozuke1
    mozuke1 Member Posts: 39
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    I hope it’s ok to reply to an older post, I’m new here :)

    I am just recently diagnosed. I had one dr/system offer me palliative care- hormone suppression and whatever Ibrance does, with a possible mastectomy down the road. Another dr from another system suggested a more aggressive approach and a second agreed and told me they consider me oligometastatic. My current treatment plan is as for one at an earlier stage- chemo, surgery, radiation and SBRT radiation to bone mets (as long as no further mets appear). I’m scheduled for my port placement tomorrow and chemo to begin in a week.

    I’m struggling a bit because the 1st hospital had such a different approach. I feel like I'm questioning the legitimacy of the aggressive plan, am I grasping at straws here? Are they? It helps me to see that others are being offered this treatment course. I’m not sure if we mention treatment centers specifically, but mine is a nationally known one. This has all been so confuding

  • sondraf
    sondraf Member Posts: 1,579
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    Hi Mozuke,

    I am in another time zone so ca maybe point you in the right direction. There are two threads - the De Novo thread and one for Oligomets (just started so its rather limited in content) you may want to check out. The approach the other two hospitals are proposing is becoming more accepted, with the first approach more the current standard of care. I feel like there is some info or studies in one of those two threads above that may help. (they are in this section of the forum, I just cant figure out how to link!)

    Please also don't be frightened by the 'palliative care' line as Ibrance is an excellent drug. I am 2 years in on it myself (and going for mastectomy shortly), Mel of Mel's Living Room (the My Life My love thread - definitely stop by!) I think is at 6.5 years and there are many other women on here somewhere in between those figures.

    Unfortunately as Ibrance is so new and the thinking just emerging about oligo treatment its difficult to point to studies or anything that shows different outcomes, so its really just anecdata and comes down to your personal preferences and risk tolerance. I do hope youll come join the rest of us de novo ladies on those threads cited above!

  • mozuke1
    mozuke1 Member Posts: 39
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    Thanks for the reply! Were you not offered a more aggressive plan, or did you choose not to do it? My currents drs said that 5 years ago I would not have been offered this line of treatment. I have a friend with de novo MBC who’s been on ibrance for 6 1/2 years and doing fine. I feel like I would regret not doing the chemo, but it’s such a big decision

  • sondraf
    sondraf Member Posts: 1,579
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    Was not offered a more aggressive plan and I had a very troublesome met at the time that needed radiation ASAP. I also started under the NHS system here in the UK and its very very lockstep - if the national body that sets standards hasnt agreed to something there is no latitude for practitioners to do anything else. So Ibrance it was but its worked out ok. I would also say I am just outside the boundary for being considered oligo with five mets spots to bones (lumbar and pelvis) - its not like a smidge on a rib or anything - where it would have been a toss up if the more aggressive option had been a choice.

    Someone noted somewhere on here recently that there is a lady from the original trials STILL on Ibrance - 10 years later! That's amazing. So while no one can guarantee that sort of response, it does show what the drug can do. And there are other options trundling down the pipeline if you check the trials thread. The name of the game is to stay alive with the best quality of life until something better comes along!