PET SCAN RESULTS

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Keepmewell1
Keepmewell1 Member Posts: 16
edited October 2018 in Stage IV/Metastatic Breast Cancer ONLY

I just had my first PET scan after being diagnosed with metastatic breast cancer to the bone and lungs in May 2018. The results show that the treatment is working and the tumors are shrinking. However, I didn't feel the relief or happiness I expected. I'm still confused about " remission" and what it means if the tumors are no longer visible eventually. Will the cancer return eventually? Has anyone else had this experience?

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited September 2018

    KeepMeWell,

    It is great that your tumors are shrinking - that means that the treatment you are on is working.

    But, as you have realized, that's not a cure. When things are going well, your tumors will continue to shrink, and you might even get to NED (no evidence of disease). NED is nice, but it really isn't remission as the scan can't see masses below a certain size, depending on what sort of machine you are in. So, the MOs (medical oncologist) suspect that there are microscopic cells, lurking, waiting to make trouble. Which is why, even if you are NED, you might continue to receive treatment, to help you stay NED.

    Or, your next scan might show no progress, but no regression either. That's what we call stable. This is good too, unless you have an enormous disease volume and are in a lot of pain.

    The scans we hate are the ones that show progression. Now, if the progression is in one spot only, there's a chance you can stay on your current treatment and address that spot with radiation or surgery. If that is not an option, progression usually means a change in treatment. That will be for you and your MO to decide. We have what we call "progression depression" - that probably doesn't need explaining.

    To answer your question, we have all had the experience of a good scan not being the ecstasy we had expected. I think it is because we realize that Stage 4 breast cancer treatment is medical whack-a-mole. There's no cure yet, though I expect that we are getting closer than ever with the new immunotherapy protocols.

    Will the cancer return eventually? It will try, as that is cancer's nature, but you and your MO will push it back. You have YEARS ahead of you, so keep yourself strong. Eat well, get exercise, and keep your psyche in good shape. It's a marathon, not a sprint.

    Have you had genetic analysis of your tumor? That can help inform treatment choices, though at this time, I wouldn't recommend turning down a treatment because your analysis said it wouldn't help. I've read too many stories of patients doing well on a chemo that wasn't supposed to work for them.

    Welcome to Club Met, the club no one wants to join. I hate the reason I had to join, but I love the people here. Without this group, I'd have gone completely mental.

    Jennifer


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  • pajim
    pajim Member Posts: 2,785
    edited September 2018

    Hi Keepmewell, congratulations on your treatment working. That's great! I hope that you can get to a point where the scans see no evidence of disease and you can stay there for a long time. [I'm not kidding, or being facetious or anything. It's truly something to celebrate]

    Unfortunately breast cancer is one of the few cancers that for Stage IV they can't "cure". I have a cousin who had Stage IV colon cancer. After lots of treatment she entered remission. And five years after remission (still in remission) they have pronounced her cured. I'm jealous. We MBC patients, mostly the cancer will come back so it's rare to hear the word 'remission'.

    There are people who get to NED and stay there for many years. I personally had a clean PET scan for 2 years. It was a bit of a shock when the next one showed 'something'. Ah well.

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  • Keepmewell1
    Keepmewell1 Member Posts: 16
    edited October 2018

    Thanks for replying Jennifer and pajim. Jennifer, your explanation of NED and stable really helped me. They throw those terms around but don't really explain what they mean. My doctor is so happy that my cancer is responding so quickly to the treatment and I am happy too. However, I'm afraid of feeling too confident because they never forget to throw in, " there's no cure and it will probably return at some point." Your description of it as medical "whack a mole" was perfect. Pajim, when you had a clean PET scan for 2 years, were you still on treatment that entire time? This is all so confusing and life changing but I guess I'll figure out how to live with it over time. I am so grateful for these support groups. They helped me through my first diagnosis and I'm sure will help me navigate the ups and downs of Club Met!

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  • pajim
    pajim Member Posts: 2,785
    edited October 2018

    Oh yes, treatment always. The treatment keeps the cancer away.

    You'll find a thread where Tina is taking three months off, but she's been NED for 7 years. And they'll scan to make sure the cancer isn't growing again.

    Radiologists always say "no evidence of metabolically active disease". At least mine did. They're covering themselves because there's probably micro-disease and they don't want to be accused of not finding it. LOL. CYA CYA. Now of course my scans say "slight progression of osseous disease" or "2cm lesion in the liver", ugh. (Hoping the next one says no liver lesion)

    Brass tacks: How this really works is you start a treatment. It kills the cancer cells. You respond and the tumors shrink. Maybe even go away. If they just stay the same size your scan reports say 'stable'. The object of the game is to keep the cancer (a) from affecting your life and (b) from going. You stay on that medicine for as long as this is happening.

    When the cancer starts to grow again that means the cancer cells have become resistant to the medication you are on. So it's time to find something else. You start a new med and it kills the cancer cells. Tumors that were growing now shrink again. For however long it lasts.

    Whack-a-mole is one analogy. Another is of a smouldering fire. When it flares up you put it out.

    It's early in your diagnosis. You'll get better at this. Just ask questions. Someone here will know the answer.

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  • klmpk
    klmpk Member Posts: 56
    edited October 2018

    Thanks as always for the stuff you all share. I've been living in Xeloda world for about 3 months and decided to wander over to this thread. You just answered so many of the questions that float around my brain. And so clearly. I've had 3 pet scans since last November when I was first diagnosed with MBC. It had been 3 1/2 years since my original dx. I thought I was cured . I'm still not clear where my "mets" are. They seem to be somewhere in my abdomen. A little here, a little there. I have my pet scan and a cat scan on the 29th. I just hope Madam X is working. I feel great. I have little twinges of pain in random places. Nothing substantial, just a little twinge. Have no idea what that means. What I guess we know for sure now is that we live in 3 month time capsules waiting for results of our scans. I hope I have 2 or 3 good scans so I can stop worrying about them.

    Karen

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited October 2018

    kimpk. I like your analogy "3 month time- capsules", very descriptive of life with MBC. What TX are you on? I'm on Ibrance letrozole since January 2017. It's working on lung and chest mets but liver is more stubborn. I had a scare of progression last month. Almost two months into my time- capsule till scan in November. Ugh

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