De Novo Stage IV
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@exbrnxgrl Thank you, and I’m so sorry for your loss as well. Wow, Stage II. That’s so surprising. I still to this day don’t understand how each type of breast cancer is so different.
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KBL,
She was initially stage II but was dx’ed with bone mets about nine months after she finished chemo and then liver mets. I feel like I lied to her and gave her false hope. Her youngest child is still in high school. I will never stop being stunned by how senseless all of this is.
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@exbrnxgrl I would assume hers was triple negative or one of the more aggressive ones. You had no way of knowing, and I bet you gave her hope, which she needed. Its especially hard to hear about those with young kids.
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KBL, I was about to congratulate you on the good TM results, please hold on to this positive news.
I am so sorry to hear about the passing of your good friend. I understand how losing a friend, no matter how we met, impacts us. Divinemrsm well said at least you got closure. It reminds me of Beliss (Barbara), I met her here at the beginning of my diagnosis and she was a source of support and assurance to me. when I heard that she was in the hospital I wrote to her and in a minute she wrote back with a note that she had already received "the talk" from her MO. I hate that talk… I was so sad and devastated I wanted to ask her for her daughter's phone number but I don't know what prevented me. we continued exchanging messages until I hadn't heard back from her and that hurt me a lot.
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Jobbibo, thanks for sharing your good news, honestly I have never heard of Signatera test, I had to search! I am glad you had some sort of relief. I got covid in late September, chose not to take paxlovid, so with home remedies like drinking a lot of liquid and OTC medication it resolved but it took 10 days until the test came back negative.
KBL, when we started the first line of treatment I+L, it was suggested to start letrozole for a couple of months and then add ibrance, an experienced nurse let me know that it has been more effective that way. I don't understand this clinical trial, setting restrictions on starting CDK7 and Elacestrant together that disqualify patients who have already started Elacestrant. I really really want this new drug or any effective less se drugs to be approved soon. I will share what I learn about this CDK7 and will ask my MO. actually he might mention some trial that is going to recruit but I didn't listen carefully, was so upset and disappointed about the CAT scan results. I also heard that immunotherapy will be one of the probable options for Hr+ patients. what we need is for them to speed up. I see that CDK7 is on fast track with the FDA.
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@snow-drop Thank you, Snow-drop. It seems so many of have similar stories. I am so sorry you didn’t have full closure. It’s really hard.
I got a message from the clinical trial that I can’t join the CDK7 trial because I’ve already started Orserdu. Figures. I’m not sure I would have done it, the trial was three hours from me, but I would have seriously considered it.
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The CT scan results are in the patient portal, and they're not what I was hoping for. Metastases to the spine, skull, and liver, possibly spots on a couple of ribs, hip (ilium), and sternum.
It's going to take me a long time to absorb the reality, I guess, I just feel a little numb. I think I'm too worn out and groggy from the past couple of weeks of marathon appointments to be able to even react much.
But, I am also feeling motivated to fight this… even though I know that "motivation" alone doesn't slow down cancer. Can't hurt to think positive, I suppose, in the face of this. I just want to start treatment. I'm tired of waiting and waiting. I want to do… something. (I don't understand how calm I am, for now - I want to go full cancer warrior mode.)
The last time I saw the MO, he noted letrozole and kisqali as possible treatments - I'll hear more on the treatment plan tomorrow, I hope.
Some genetic testing will be done. And I meet with a psych/social support worker next week.
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@doodler I know that sounds so scary, and we are all different, so each of us responds differently to treatment. I want to let you know I have it in all bone and bone marrow throughout my skeleton and in my stomach, and it’s been five years in my stomach. I wish for you that the treatment works as it has for me. I am hoping once you can start treatment and have the first scan after an amount of time that it kicks the cancer back and you have few side effects. Please keep us posted. 💕
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Hi @doodler,
I can understand your desire to start treatment as soon as possible. Once you find out about it, one can't help but want to address it immediately. Metastases are scary, and it's only natural to want to begin doing whatever one can to mitigate any further spread—and ideally of course, shrink the affected areas in the hopes of reading NEAD (No Evidence of Active Disease).
It sounds like you're on the right track. I commend you for equally being on top of supporting your emotional needs by speaking with a psycho/social worker next week. Please let us know how everything goes between this, the genetic testing, and anything else on your mind. We know how stressful and overwhelming it all is.
In addition to these forums, which are a great form of support… we do have free Zoom meet-ups with others who are metastatic. I can't begin to describe the immense amount of love, warmth and support members find in them. If you feel up to it, I would recommend giving it a try one of these days! We actually have one tonight at 8:30pm EST. You can check out the different dates/times the 3 MBC groups occur at, and register for them here:
You're welcome to attend as many as frequently or infrequently as you desire. They're very laidback and flexible. 😊
We're sorry for this news, but we're here to support you. ❤️
Warmly,
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@doodler sorry for the not-so-good results. Genetic testing is a great idea. When I had chest node mets that stopped responding to Kadcyla, the testing showed that my Her2+++ had changed to Her2-.
As far as the liver met, my liver was filled with mets in 2004. I had a liver resection for the 13 cm tumor, and then 9 months of Gemzar & Herceptin that cleared out my liver. My liver has remained clear ever since. There are a lot of chemos that work very well on the liver.
I don't have bone mets, so I am no help there. I am also now Er+, Pr-, Her2-. Xeloda might work well on your liver, which is what I am on right now.
Good luck!
Denise
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Dear doodler,
Letrozile+ribociclib seems like a very good choice according to latest Monaleesa clinical trial updates. Will you have a biopsy? I'd say if ki67 is higher (like >20-30 %), I'd also consider some form of chemotherapy, which could knock liver and bones quickly back. It is great you are in a fight mode - that helps a lot! Hugs,
Saulius
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@kbl, @denny123 thank you so much for the support, and the additional info. I feel like I'm putting together a puzzle but the picture gets clearer each day. The MO was quite reassuring. Really hoping that I can kick this thing in the butt over the next few months now that I'm starting meds. Starting the letrozole as of today, I guess, that prescription's on its way to the pharmacy.
@bsandra I have had a biopsy but I'm not sure what ki67 refers to… I am still on the learning curve. That's something for me to look into though.
Mods, thank you for the virtual support links, I will look into that as well.
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Hi all, I hope everyone is doing ok.
@kbl, @denny123, @exbrnxgrl - I am very sorry for the loss of your friends. Thinking of you all.
@doodler I’m pretty new to this diagnosis as well, so I very much understand how you’re feeling. I’m really sorry you’re here. There is so much knowledge and support on this site that will help you get through these initial days. Please keep posting and reaching out. I’ll be keeping you in my thoughts. You CAN do this!
@jodyj I hope your treatment is still going ok for you.
@denny123 good luck with your next set of CT scans. I hope the few spots will have disappeared by then. Please keep us posted. Did your doctors have anything to say about your Guardant report?
@kbl great news about your tumour markers! I really hope they continue to remain low. How is your stomach doing on the Prilosec and changing the timing of Orserdu? Sorry about the news about the CDK7 trial. It would have been nice for you to have the choice.
@snow-drop I’m keeping you in my thoughts. I hope the next set of scans show that Elacestrant is working. I’m with you - I would find the 20% baseline kind of alarming. Side note, I had major stomach/torso spasms with metoclopramide, which I took prior with the Docetaxel. I asked for a different anti-nausea medication (Zofran) and that did the trick. Maybe you’re opposite of me?
@jobbibo that’s great news about your Signatera result! I hope it stays down. How are you doing on the Tucatinib? Have you developed any additional side effects? I’m sorry to hear about the COVID. I hope you’re recovering ok.
I am doing alright. I started the HER2Climb-05 trial today. I have been switched from IV Herceptin and Perjeta to Phesgo and given Tucatinib pills. I am hoping it’s not the placebo…
I also got my second opinion on surgery. This surgeon is willing to do it, but it does have to be a mastectomy as the area of necrosis is so large. He made sure to repeat multiple, multiple times that there is no evidence to support that it will impact my overall survival. I asked him what he would advise a loved one to do and he said that given my impressive response to treatment, he would tell them to just get it all gone. It’s weird. I have been pushing for surgery but now that I have the choice, I can’t seem to pull the trigger. I know that if I don’t do it, and I progress or I have a local recurrence, I will feel regret and tremendous guilt that I didn’t do everything in my power to help prevent it. I am quite scared to do it. If I were an earlier stage and being told this was the treatment plan, I would do it without hesitation. But this is a permanent change that I’m being told won’t help me live longer. My mind is having trouble processing it all. How will I feel without one breast? Will I eventually get over feeling like I’m pretending to be normal? What about wearing prosthetics? Why bother if it’s not going to help me anyways? It feels like I’m damned if I do and damned if I don’t.
Keeping you all in my thoughts.
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Dear harrow, your worries are more than understandable but in the end decision is yours. I am happy your second opinion doctor is of the same opinion that our surgeon was - it payed off for us. Hugs, Saulius
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Dear doodler, ki67 (proliferation index, % of positively stained cells) would indicate how many cells in the sample are "active" to multiply, to put it simply. May chemotherapies kill cells in this state and therefore if ki67 is high, most probably chemo might be very effective, given that its delivery to the tumor is good enough. I think you should find this variable in your biopsy report? Saulius
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@harrow Wow, that’s a hard decision. I have never been faced with that because they can’t even see the cancer in my breasts. I am only giving my opinion, as someone who hasn’t had to make that choice, so take it for what it’s worth. If it were causing me pain or any issues at all, I wouldn’t think twice. I’d have the surgery. If it was a lump I could feel, but it wasn’t causing pain or issues, I’ve known ladies who say their doctor wants them to leave it because if it grows, it gives an indication it’s time to switch meds. Please keep us posted on what you decide. I do know a lady who is years in to a Stage IV diagnosis who is having a single mastectomy next week because it’s causing her problems.
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@harrow .. My NP still feels that my BRCA2+ is a very low percentage. I will see my gynie on Monday about the results of my pelvic ultrasound. The tech told me that all looks okay. Thanks for asking!
As far as a mastectomy, I had a double upon dx. Then later it was confirmed that I had been Stage 4 from the beginning and my liver mets should have been treated first. I have often asked if the dx was necessary, but no one is sure. I did have fibrocystic disease, with many painful lumps anyway. So at least that pain is gone. The dx wasn't bad since my chest just felt numb. The painful part was the axillary dissection, which you won't have. When I went through recon, I lost one of my implants to a staph infection. So I went for several months with only one saline breast. The prosthesis wasn't too bad. And what I did most often, (as I do now since my boobs are uneven), was to insert a molded hollow swim cup into a sports bra. So that you you would look even.
I think that you would feel better if you have the mastectomy since you will know that you have done all that you could to prevent further problems.
I have known many women with a single mastectomy and it didn't bother them.
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@bsandra yes, I have read your wife’s history as well as your response to Jobbibo when she was asking about pushing for surgery a few pages back. All that rationale makes sense to me. I’m glad it has been a successful decision for your family.
@kbl I think the fact that there is nothing left in my breast except the tumour necrosis is also contributing to my hesitation. Both the IDC and, surprisingly, the DCIS have both resolved. The latest CT scan said, “no visible soft tissue mass detected”. I will be having another PET scan in mid-February. If that’s true and there are no active cancer cells left, a mastectomy feels so extreme. BUT, what if there are and they just can’t be detected? That is always in the back of my mind.
@denny123 I also have very cystic-y, lumpy breasts (category D on the density scale). I currently have a cystic lesion in my left breast that had me super freaked out until I was able to get a scan done. I fear this will be my future. That with every new lump, I will go to worst case scenario, so there is one reason to get the surgery. I do a lot of reading on the HER2+ threads, especially the stories of exceptional responders like yourself. I would say most have had surgery, if I’m remembering things correctly, which is encouraging even though there are conflicting studies regarding its impact on survival. I’m happy to hear you know many women who have had a single mastectomy and it didn’t bother them. I actually don’t know anyone that has had a mastectomy, so I kind of feel like I’m flying blind.
I am leaning towards having the surgery. I woke up today feeling a bit more confident in a decision, but haven’t made the phone call yet….
Thank you all for taking the time to respond. I appreciate your opinions.
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@harrow, Thanks for thinking of me. I'm still on the Taxol and I have one major side effect, which is severe worsening of acid reflux. Have had to switch back to taking a proton pump inhibitor (pantoprazole), which helps but doesn't eradicate the problem. At least I'm getting a bit more sleep now. Wedge pillow also helps. I feel like a pro now going through the actual chemo treatments. So far, so good still.
Good luck on your decision about surgery. I had a single mastectomy with saline implant 26 yr ago for extensive DCIS and I wonder whether a double mastectomy would have prevented the stage IV disease. My oncologist says no, and I find that comforting, but who knows?
Sending good thoughts to all here.
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I haven’t checked up on here for a while, trying to catch up! Sending positive vibes to everyone!
@kbl I’m so sorry for the loss of your friend. And for the others who have gone through this as well. Sending all my love.
@doodler I’m so sorry you have to join us on this thread but I’m so happy you found us. The beginning is so so hard. I hope you find great support in this group. Let us know how treatment goes, crossing my fingers for very little side effects!
@harrow I’m still doing pretty well! I do still have some of that ear pounding once in a while, along with off and on GI issues but they’re not constant. I wish there was something a little more obvious for me to say I’m for sure on it, but with the Signatera going back down to 0 it’s making me hopeful I am. I’m hoping you’re also on the drug, definitely keep us posted on how you’re feeling! I started with Phesgo so never had IV H/P to compare it to but I hope no additional side effects have come from that. I’m thankful I can have the shot instead of staying longer for the IV. I definitely understand all the varying thoughts when it comes to surgery. I’m glad you’ve found a surgeon willing to do it so you at least have the choice. My surgeon is all for it and my oncologist says if I’m doing really well at the 1 year mark then we can consider it. I feel myself leaning towards wanting it as well but actually taking the step of having the surgery is another thing lol. My main concern with getting the surgery would be if I have to pause on my medications while doing it, so if that’s the case I would definitely want to be stable and feel comfortable with a potential break.
Thankfully Covid remained really mild for me, I only had to delay my treatment by 2 days. I have an ultrasound on Tuesday because I keep getting pain in my armpit that starts making my whole arm numb. My oncologist said she didn’t feel anything which is good but said it could be a pinched nerve. So I’m hoping nothing too bad comes from that ultrasound but the pain has been concerning. I then have my first CT scan since I started the trial on February 5th. Blood work / Signatera indicates things should go well but I’m sure we can all relate to the scanxiety. It’s also my first scan since dropping the Taxol.
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@harrow I've read your concerns on surgery, along with the responses from these great ladies. I think I'm gonna be the lone if I had to do it over again, I wouldn't ladies. I faintly heard the surgeon say it will not necessarily extend your life. I just know that I now have lymphedema, both under one arm and truncal lymphedema. It happens or can happen just about anytime after the removal of lymph nodes. I also have post-mastectomy pain syndrome. Next concern, I believe if I had at least kept the one breast I would have had follow up mammograms. After a double mastectomy, there is no follow up. I at least thought they'd do ultrasounds after the fact. Would I have been caught prior to stage 4 if I had at least one breast, I don't know, but it's at the forefront of my mind. What works for one does not work for all, but I did want you to at least hear the other side of the equation.
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@jodyj I’m sorry to hear about the acid reflux. Hopefully the meds continue to help lessen the symptoms. I wish things continue going well for you on Taxol. That’s interesting what your MO said. I guess it comes down to the million dollar question - why do some recur/progress and not others?
@kbl glad to hear the meds and the schedule change is helping. That must be such a relief!
@jobbibo I wish there was a way we could know for certain too. I am hopeful that we both are receiving the real thing, although I actually don’t really have additional side effects so I’m thinking I got the placebo. It’s where my mind goes. Do you have to keep yours in the fridge? I do, which makes being out of the house all day a bit difficult. I will have to pack it in a cooler or something if I’m going to be gone for more than 12 hours. I’ve been told that I can have surgery without stopping the meds. Hopefully that’s the same case for you. Good luck with the ultrasound on Tuesday! Sending positive thoughts your way. Wishing for it to be just a pinched nerve! Let us know how it goes, along with the CT scan.
@irishlove thank you for sharing your story. It’s good to hear both sides of the experience. The potential for lymphedema is a concern for sure. The surgeon didn’t say anything about lymph node removal but it was more just an initial discussion on whether or not he would agree to do it. I assume there won’t be lymph node removal unless it’s part of the mastectomy itself? There currently is no activity in any lymph node. I had never heard of truncal lymphedema before - thank you for informing me of this. It’s definitely giving me a lot to consider.
Clearly, I’m still struggling with the uncertainty of it all. The “might”, “may”, “could”, “likely not” about everything. I have a memory of when I was younger and I was debating on breaking up with my boyfriend at the time. One of my friends said to me, “You know what you want to do; you just don’t have the guts to do it.” How I wish my life was that simple again.
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Dear irishlove, dear harrow, yes, lymphedema is a big issue, especially with axillary LN removal but in many cases, and in my wife's case LNs were not removed. When we discussed surgery with the surgeon, he said he'd leave LNs in case there's some residual disease, so that LNs could act as a barrier to hold further spread. This is exactly what happened and then, when LNs were increasing a bit (they were noticed at 3 mm), she had another surgery and then Cyberknife. She has now slight lymphedema of the left arm but mostly when she does not move it for longer times (work at the desk). From what I know now also from a few other ladies, if LN involvement is not seen, and response to drugs in 1st line metastatic setting was outstanding, mastectomy could be performed without LN removal. If something, LNs can be removed later, or fried with stereo-tactic radiation. Hugs,
Saulius
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I had neoadjuvant chemo—chemo before having a lumpectomy—which shrank the tumor quite a bit, down from about 3” x 2” to maybe slighly larger than a pea. I chose not to have any lymph nodes removed. None of my scans had showed any LN involvement, and I didn’t think there was a need to slice into them when not necessary. I also wanted to avoid lymphodema. My surgeon wanted to remove the sentinel LN and honestly, I’d read that doctors make more money by doing more extensive surgery like that. It sounds mercenary, but I am not too naive to think it doesn’t happen or that all doctors operate out of the goodness of their heart without thinking of their pocketbook. Anyway, I am glad I chose the no LN option. It was one of the first times I learned to listen to my gut and advocate for myself.
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Back when I had my dmx, in 2003, it was common to remove lymph nodes. I lost 37 from the left and 18 from the right. But it had already spread to my liver, and 3 liver biopsies missed the tumor.
I did get lymphedema, but went immediately for PT and now it isn't noticeable at all. But I have continued to avoid lifting heavy items, as instructed.
I feel that when one is already Stage 4, the LN removal is not necessary. Any systemic chemo should take care of any positive nodes.
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I wasn't de novo, but stage 3b; so "almost de novo". In my case I had a large tumor that was pushing on my axillary lymph node area, although scans did not indicate any spread to them. Like Divine, I had neo adjuvant chemo that shrunk the tumor quite a bit. The surgeon did a sentinel node biopsy and found nothing, so did not remove nodes, so as not to aggravate the mild lymphedema that the tumor pressure had already caused. The oncologist and other doctors I've dealt with since then have all indicated disagreement with what he did and believe he should have done ALND. I continue to have mild lymphedema in that arm and am glad he did what he did. I still have spread only to my bones.
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Good morning! And yet another perspective. I chose to have a single mastectomy on the breast with the tumor. My surgeon, a woman, saw that the cancer in my lymph nodes was situated far down in the lymph nodes and chose to leave the nodes alone. When I had my follow up, she said that, had she gone into my lymph nodes, I would end up with lymphedema which wouldn't be good. I have no problems and appreciate what she didn't do. But as others have this, surgery is a very personal decision. Thanks.
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@bsandra thank you for the additional information about treating LNs later. I didn’t realize this could be an option. I’ll keep that in mind. I really appreciate you sharing your knowledge from all the research you do, so thank you.
@divinemrsm I had neoadjuvant treatment as well (finished chemo in December and now just on targeted therapy H&P) and had a good response. I did, however, have fairly extensive LN involvement prior to starting treatment. Now there is none. I do agree with you though, evaluating necessity. Thank you for sharing your experience.
@denny123 I’m glad to hear that PT worked for you and the lymphedema you experienced. I have read that it can really help, along with the exercises the surgeon will provide.
@threetree thank you for sharing your surgery experience. I find the varying opinions from different doctors confusing and stressful sometimes. I’m happy you find comfort in your surgeon’s decision, regardless of what others think. The surgeon who agreed to do the surgery is the only one willing to acknowledge that, while some studies suggest it likely won’t make a difference, they don’t know with 100% certainly that it won’t.
@mojos I appreciate you sharing your experience with surgery and your surgeon. I’m glad that she considered potential complications for you when making her decision and that you have no issues.
I am thankful for everyone’s responses and support. I hope everyone has a good week. Thinking of you all.
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