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Do metastatic patients never fully get rid of the cancer?

berndatteire
berndatteire Member Posts: 3

Hi all, I am a metastatic breast cancer patient, after 12 years remission from ER+, PR+, HER2+ my cancer came back as ER-, PR-, HER2+. It is a mass in my chest, in the lymph nodes of my right armpit and a tumour on my pancreas. However both my breasts are clear.

I've been receiving Paclitaxel, Pertuzumab and Trastuzumab on the first week of each cycle, Paclitaxel on the second week and then a third week off. My recent CT showed things have shrunk a lot and after one more cycle of chemotherapy I'll start maintenance with just Pertuzumab and Trastuzumab every 3 weeks.

I'm confused because when I first had breast cancer I was treated until it was gone, then put on Arimidex tablet maintenance. This time around I'm starting maintenance even though there is still some cancer left. My oncologist said it will never go away fully and this is what we do, but I just wanted to check if you ladies have had this same experience? It feels a bit horrible still having it in me...

All the best,

Bernadette

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,638

    Bernadette,

    I am sorry that you find yourself in this position. I am equally sorry to say that your mo is correct. Once your bc has metastasized, the horse is out of the barn so to speak. Treatment can hold it back and even make it inactive but it is always out there and can become active at any time. I know no way to say this gently but Stage IV is incurable. Current treatments have been extending our lives but the dark shadow still looms over us. Your earlier bc was confined to the breast and the goal of treatment was to stop it right there. The goal of treatment with metastatic disease is to keep it from spreading further for as long as possible. Your breasts being clear is not relevant as breasts are not essential organs i.e. no one dies from bc confined to the breasts.
    I was stage IV de novo and have only been on aromatase inhibitors. This is considered appropriate treatment though some MO's do choose to go more aggressive. Each patient and each mo is different. BTW, I just passed my 11 year mark without progression at stage IV. While I am definitely an outlier, longer survival may be possible in some cases. I also want to comment on cancer being “gone". There is actually no way to know this. There is no test that can detect dormant cancer cells so “gone" simply means not detectable active cancer. Those sneaky cells can lay dormant for years before something triggers them into activity (why that happens is also unknown). As a very general statistic, about 30% of earlier stage patients may recur at some point in time*. I apologize if this is shocking or I am being too blunt but soft soaping reality doesn't change it. While it is impossible to predict the course of anyone's disease, I have certainly noticed members on bco seem to be surviving longer than when I first joined.

    I apologize for hitting you with this big pile of not so great news but despite that there is hope as new drugs continue to be developed. Have a good cry, scream and yell. When you feel ready learn about the realities of mbc and bear in mind that that though not as fast as we would like, progress is being made in mbc treatment. Again, I'm so sorry you find yourself here but we are a good group who will be more than happy to support you. Take care

    * This is a very, very general stat not broken down by stage. It is historical data and is not considered predictive


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,638

    I just noticed that you mentioned that your mets are ÉR-. This would make me question the use of Arimidex since it, and the other aromatase inhibitors, are generally considered effective for ER+ tumors. I am not a doctor nor do I claim expertise beyond what I’ve learned on my own, but if it were me, I would ask my mo about that.

  • nopink2019
    nopink2019 Member Posts: 384

    As you might gather from the very informative and heart-felt reply by exbrnxgrl, she is a treasure to all of us with her knowledge & support. There are many topics here specific to different issues which will provide information as you proceed in treatment. You'll notice lots of grumping about the "improved" platform that was sprung on us in March. Try to muddle thru and get the advice you seek from this knowledgable group. My buggest hiccup in MBC treatment was going back to original treatment center. They were equiped for early stage BC. but not knowledgable re:MBC (ie, dose reduction is common, schedule out-of-town patients with consecutive appts to reduce travel time, etc). I opted for a cancer center associated with NIH, even though it is another hour drive. Very happy with that decision, so be sure you trust the judgement of your MO.

    Sorry you are here. Glad you found us.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,638

    Thank you for the lovely compliment, nopink. I am never quite sure if I am being helpful but I hope so.

    Bernadette, again I want to apologize for serving you a big sh-t sandwich when it seems clear that you were unaware of what mbc actually is and why it is so different than breast cancer confined to the breast. It’s a lot to take in, especially the incurable part, but there is still reason for hope as new treatments become available. No one has a crystal ball and I certainly don’t want anyone to put a foot in the grave even one minute before they have to. After all, who would have imagined that I would be here 11 years after my dx? Certainly not me.

  • olma61
    olma61 Member Posts: 1,016

    yes I am her2 positive like you and the herceptin and Perjeta are the maintenance treatments, most HER2+ MBC people do not stay on the Taxol forever, you stay on the targeted therapy as long as the cancer is stable.

    If it begins to grow again you will go to the second line treatment, which could be Enhertu or TDM1.


    good luck to you and I hope your metastatic tumors continue to shrink on your targeted therapy.

  • elderberry
    elderberry Member Posts: 1,037

    bernadetteire: welcome to the club to which no one wants to join. I was de novo. I was blind sided and never had a peaceful time when I thought BC was all behind me. I sometimes think that is better than thinking I was okay. Hope that the treatment line keeps those cancer cell buggers in check and you can live a fairly normal life. Easier said than done, try not to make it the focus of your life.

    I have found H&P to be pretty easy on the system. I have numb little toes from the Taxol and either Perjeta or Herceptin give me the trots and I think my forehead rash is from Perjeta but otherwise, I just try to chug along. I love reading and my time in the infusion centre every three weeks gives me uninterrupted quiet time to read. The centre is only a 25 minutes drive away. I try to find something positive about this sh*t storm

    Just breathe!!!


  • dawny
    dawny Member Posts: 588

    Hi Bernadette

    If I am reading your post correctly, you are actually asking why you are not continuing on with the chemo cycles, is this right? You feel as though you should be having more rounds? How many have you had so far?

    In your previous post, I see you asked a question about Denosumab/Prolia being safe whilst on Chemo. I believe it is common to have it during chemo, and continuing after chemo as well. There does seem to be some differing answers as to how long you can stay on it though. I have had it since my diagnosis at Stage IV, over 11 years now.

    I hope you don’t feel as if your previouspost was ignored, sometimes in a busy thread, questions are missed. Keep asking, someone will help you out, there are a lot of knowledgeable people around here!

  • malebreastc
    malebreastc Member Posts: 86

    Hi Dawny

    Are you getting Denusumab for last 11 years ? Any SE ?

  • anotherone
    anotherone Member Posts: 539

    ok I will answer - usually chemotherapy part is discontinued from herceptine and pertuzumab because it causes more downside than upside after a few months - it is either impossible to get rid of all metastasis or the body is damaged severely before it happened .

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,638

    anotherone,

    I answered that for the op earlier and think I may have hit her with something she wasn't prepared to hear. She hasn't been back and I feel bad. Too many people believe bc, including mbc is curable and it can be a shock to find out that's not the case. I really feel awful.

  • sunnidays
    sunnidays Member Posts: 152

    Can there really be that many people who don't realize there is no cure for MBC you have to wonder what their oncologist is like having said I miss read something and it gave me the impression that if someone with MBC did not have any progression for over 20 years that they are cured.

    It must be about how the information is communicative to the person.


  • parakeetsrule
    parakeetsrule Member Posts: 605
    It's also because of all the pink-waving save-the-tatas stuff. People think breast cancer is curable and don't realize it's not. They think if it was caught "early" that's good and means you're safe.

    And it's not necessarily about communication. There are people in my MBC groups who refuse to believe what their oncologist says. They get mad and call them liars and rant about not being given hope. They can't be convinced that God, food, prayer, supplements, Mexican clinics, and/or sheer force of will won't cure them. Some people believe the cure exists but is being hidden by "someone" and needs to be exposed and shared. It's sad and frustrating.
  • exbrnxgrl
    exbrnxgrl Member Posts: 4,638

    parakeets rule,

    Quit reading my mind 😉! I think pink washing has convinced too, too many people that bc is easily dealt with an no longer a big deal. I have had several people tell me that no one dies from bc anymore. And everything that was said by people in your support group? I’ve heard it as well. Sigh…

  • spookiesmom2
    spookiesmom2 Member Posts: 11

    Floriduh First Lady announced she had been dx with bc. Went to moffit for tx. Then announced she was “cured"". I snorted. She is in remission, and should be watched for the rest of her life. And stop spreading falsehoods.

    Pinktober is just a few days away. Ugh.

  • sadiesservant
    sadiesservant Member Posts: 1,875

    parakeetsrule, amen! There is still so much misinformation and lack of understanding of the reality of this disease, even among folks who are pretty knowledgeable. You mention catching it early. That’s another area of misunderstanding. Finding stage IV early doesn’t make much difference in most cases. It just means the patient will live knowing they have a gigantic clock ticking over their head for a lot longer. There are outliers to be sure but MBC is MBC no matter when it is found

  • dancemom
    dancemom Member Posts: 404
    • I think it really depends on the extent and type and placement and timing and everything else. My understanding of my treatment is that while the horse is out of the barn, to use that oft mentioned phrase, its movements can be hobbled. In some cases, where the mets are limited, the hope is that the growth is stopped. That's why my aggressive treatment. To remove the primary tumor to prevent more easy spread, and to halt the growth of the limited spots that were found. Halting it earlier in the spread is definitely better, although I know its not a cure. I personally don't expect to be "cured", but my Drs spoke of "curative intent" and of hopefully being able to treat this as a chronic condition eventually. My hope is to have this "chronic condition" for a long time, to live with the cancer.
  • exbrnxgrl
    exbrnxgrl Member Posts: 4,638

    sadieservant,

    As I’m in the early part of my 12th year with no progression since initial tx other than AI’s, that ax feels like it’s swinging ever closer to me. I am struggling far more since I hit the ten year mark than I was when first dx’ed.

    I feel like a total outlier. No chemo and rads to the bone met. I did have a bmx with recon because for a very brief period of time it was believed I was stage IIB (long story), I have been on AI’s and nothing else. And yes, I still have a port for the chemo I never had that threatened my life when port placement caused a complete pneumothorax of my right lung 🫁. It was like a slow leak that took two weeks to be detected followed by week long hospital stay and a month at home with a portable chest tube. So, no aggressive tx for me, just ridiculously rare, life threatening complication of port insertion. Yup, for sure I’m an outlier 😉

  • dawny
    dawny Member Posts: 588

    Hi malebreastc

    Yes, I have had Denosumab for eleven years. I don’t feel as if I have had any SE’s, but at the same time, I’m not sure sure it is working for me anymore. My ribs keep braking, just getting out of bed. I have a bone Met to one rib, that is inactive after having rads to it, and also to a lymph node in the sternum area. I’m in Australia, I’m not sure of Denosumab limits in other countries.


    Hi Spookie! 👋 xx





  • anotherone
    anotherone Member Posts: 539

    I know , should not ask here !


    🤭

    Mind , a lit of people go through all kinds of stresses and changes that neither you kor me are responsible for or can deal with or can help.🙏

  • elderberry
    elderberry Member Posts: 1,037

    exbrnxgrl: Don't feel bad about your post. The intent was not to slap her in the face with bad news. Has anyone sent Berndatteire a PM to see if she is okay? I won't do it if someone has done so already I hope she is not feeling alone and floundering in the choppy waves of a MBC DX.