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De Novo Stage IV

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  • snow-drop
    snow-drop Member Posts: 526
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    regarding our discussion about possible surgery for de novo s. I requested the tumor board to review chest scans, which show significant retraction, and asked if primary tumor removal could be of help. Funny but I’m not surprised my single-minded MO replied on behalf of other “random people who occasionally take a quick look (do they really?! I am not sure about this part!) at my chart” , he said Surgery is Off the table, because it requires a massive resection and then several weeks of radiation sessions (I think ibrance should stop during radiation therapy), he added at the end no promises for future recurrence. massive resection means mastectomy, he used this phrase to scare me?? he wants to change systemic treatment, suggested to wait until next scans!!!! Next scans? Means wait 3 months? oh dear lord help me.... this term is familiar, I heard from him time to time “wait for next scans”.... I am confused. I prefer to stay in first line of treatment, especially when I learned from illiMae.
    But considering situations and slow response of current treatment I’d like to evaluate other options as well, like surgery, so reto hear what BS has to offer. it was somehow my reply to MO, I hope it was not rude.

    I am thinking it is better to give up searching, reading reports, even searching for second opinion. Just close my eyes and accept whatever MO and the team say, like nodding doll.

  • Rosie24
    Rosie24 Member Posts: 1,026
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    I beat it,

    I'm sorry you're having such frustration with your treatment. I'm one who had lumpectomy and radiation after my MBC diagnosis. I think I squeaked by with the help of some aggressive thinking docs and an MO who didn't really advocate for surgery but sent me for consults when I asked about surgery (as directed by a radiologist reading my mammogram. I think she may have overstepped.). There is recent evidence that surgery doesn't add to overall survival and it's not standard of care. The breast surgeon I saw was optimistic that surgery would be worthwhile for me because she considered me oligometastatic, meaning fewer than five mets and in only one or two sites. I also had shrinkage of the breast tumor and liver tumors due to I/L. The BS had to “fight" for my lumpectomy with the tumor board but somehow they went along with her. I had follow up radiation also. I have no idea if this will benefit me in the long run.

    For MBC I think the focus is on quality of life and achieving stability if possible. I'm not sure what you mean by “retraction" but if your tumors are getting smaller your MO may think things are going well and there's no need for anything to change. Good luck with the second opinion. There's also a thread on surgery for stage 4. You'll see posts about the studies showing it's not shown to make a difference along with other posts. I'll try to link it here.


  • olma61
    olma61 Member Posts: 1,026
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    I beat it - As far as I know, mastectomy vs lumpectomy depends on how widespread within your breast the cancer originally was. Some people are not candidates for lumpectomy even in earlier stages.


    Sondra, yes that's the rash I was trying to think of the name of

  • illimae
    illimae Member Posts: 5,650
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    I beat it, I’m sorry your MO wasn’t more helpful but in reading your post, I have questions, which may or may not help.

    Surgery is not necessarily typical for Stage IV patients but is acceptable in certain situations like being oligometastatic (having 1-4 lesions to a single organ or bones). Not all MO’s support this and of the two biggest studies to see if removing the original tumor extends survival, both were flawed. In my case, I had a single met to my hip bone, my MO and BS were 50/50 on it, so it was entirely my choice, I chose surgery. I don’t know it it helped but I remained stable until recently with minor regrowth of the original bone lesion. I also have brain mets but my MO believes the were there before surgery, just too small to see.

    Why did your MO mention changing treatment, is your cancer not responding or getting worst on ibrance? Either of those would be a reason to consider moving on but if not, changing seems rushed possibly.

    Please never just nod and agree, do your own research too. No docs want to be questioned with random internet articles , so I recommend adding NIH (national institute of heath) to your searches for scholarly results. I had a talk with my MO early on where I agreed to trust her experience providing she hears me out when I have legitimate questions and makes time to fully explain her position.

  • tinkerbell107
    tinkerbell107 Member Posts: 289
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    Re the surgery and radiation: In my opinion There are pros and cons for the same plus the research goes back and forth re who benefits and who doesn’t based on their sample size from the trial.

    I had a lumpectomy, with the idea being stage 2. So my 2 cents is more about radiation after surgery for de novo. When I was trying to wrap my head @ the difference of opinions I re read this below article several times. In the end with help from others on this site and going with my gut was the deciding factor for me. In the end who knows if the radiation helped but I’m at peace with my decision.

    https://www.ascopost.com/issues/november-25-2019/when-to-consider-local-therapy-for-stage-iv-breast-cancer/

  • Bliss58
    Bliss58 Member Posts: 938
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    I-beat-it. I too was dx oligometastatic with two small bone mets to the hip and T11. I think that status convinced my MO and BS to go ahead with surgery. I had neoadjuvant TCHP hoping for enough tumor shrinkage to have a lumpectomy. My response wasn't complete enough, so I and my team decided on mastectomy which I was ready for all along. Afterwards, I also had radiation then started an AI. After 4.5 yrs of NEAD, I developed a couple liver lesions. Without surgery and radiation, I might've gone that long without liver progression, but maybe not. I don't regret my decision. You don't want to just nod your head and go along with treatment if you're not completely onboard with it and you may want something else. Your MO should be a partner in your treatment. If he's not serving your needs and listening, it might be time to get another MO. He must fully explain his reasoning to you for treatment to your satisfaction and all your options. I hope you can get more answers from a 2nd opinion.

  • snow-drop
    snow-drop Member Posts: 526
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    ladies thank you so much for all the support ❤️ it is nice to be heard, I am glad and grateful to be here and have your support. My MO knows how well makes me panic, when I panic I forget everything, even I can’t read my note/ list of questions. I wish I could take you to my next appointment with my MO. Bless you all.
    The information you shared, made me thinking that possibly I could be an oligometastatic, but never knew. I had only one lymph node and a lesion in l- spine and 2 very small ones in t-spine (now 3 other spinal bones are showing small lesion- thankfully stable). Delay in starting treatment caused l-spine fractured and lesion entered to epidural space, which is not a good thing, mri showed 2 areas in my cord affected by those spreading lesion, so I have to take mri every 2 month to monitor those 2 nasty spots which I did Tuesday, yesterday a call from neuro oncologist office ask for an urgent meeting today....I am not ready for another bad news....

    I tried to get second opinion from MD Anderson, unfortunately, they don’t offer online/ virtual review/ meeting, nor plan of treatment. And they want to run all tests they need in their own hospital even biopsy. They also mentioned all the patients that travel to Texas, looking for clinical trials which MD Anderson is famous for individualization of those treatments.

  • illimae
    illimae Member Posts: 5,650
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    I beat it, I live in Houston and go to MDA, it’s absolutely true that they’ll retest everything even if it’s been done a week earlier somewhere else. They also stay very busy, so yeah, you’d have to get here and have a ton of appointments. I am happy with them though, they treated me aggressively as oligo with “curative intent”, so far, so good. Good luck with whatever you decide.

  • lynn1234
    lynn1234 Member Posts: 90
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    Hello!

    I found out i was de novo just about 3 weeks after the mastectomy, right after i started chemo. I had radiation to the mets on my T-7,8 and 9 and sacrum after that. I don’t know why they didn’t do a full body scan before that time-before the surgery even. But i am doing well! Still on first line herceptin, anastrozole and xgeva after over 7 years now. Still stable. The only thing i regret is that if i know that i would still be stable i might have had reconstruction. It seemed like all hell broke loose and i thought I wasn’t going to make it being stage 4 and all, so I didn’t want to go through the ordeal of more surgery

    Tricia

  • cyathea
    cyathea Member Posts: 337
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    Tricia, you made my day hearing that you’ve been doing well for 7 years. Here’s to at least another 7

  • kbl
    kbl Member Posts: 2,793
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    Hi, Lynn. Thank you for sharing. I’m sorry you didn’t find out until after your surgery. I’m so glad you’re doing well after seven years. That does give so much hope.

  • lynn1234
    lynn1234 Member Posts: 90
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    I’m so glad I found this thread! You all are a great group and I wish all of youthe best!


  • kbl
    kbl Member Posts: 2,793
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    Thank you, Lynn. I’m so glad we’re all together sharing our stories.

    I had a bone biopsy yesterday to finally see if the lesions in my back since 2013 are cancer.  I don’t know if I posted here that I had an updated MRI on my spine last month, which showed significant progression in the lesions. Since I didn’t know if it was cancer, I asked to have it biopsied. I will know in about a week. 

  • lauawill
    lauawill Member Posts: 5
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    Hi, everybody!

    I just spent half an hour skimming through this thread, and I have to say I feel a little bit better about things. I was diagnosed this past Wednesday, August 5. My first inkling that something was wrong was way back on June 13. I woke up in the middle of the night with a stabbing chest pain that just wouldn't go away. My primary's office diagnosed it (over the phone; thanks COVID) as costochondritis, since I'm in very good health otherwise. I started medicating with anti-inflammatories, and it mostly went away ... until early July, when the pain came roaring back in my lower left ribcage.

    And then life threw me a wicked curveball: On the same day my Dad went into the hospital for the last time, I discovered a lump that I swear had not been there just a month before. And I knew. I just knew. There's a history of breast cancer in my family but all the other women were diagnosed in their mid-60s. My Dad died on July 12. I turned 50 on July 13.

    A week later I called the primary again to see what I should do about a) the pain, and b) the lump. She sent me to urgent care for a chest x-ray, which clearly showed the lump. I had a mammogram with ultrasound the next day, a biopsy the day after that, and then a breast MRI. Last Friday I got the call: Invasive ductal carcinoma with cancer cells also found in a nearby lymph node, and seen on the MRI in a distant lymph node; "areas of concern" in the sternum, spine, ribcage, and liver.

    Since then I've met with my care team. My medical oncologist set out a course of treatment even before my bone scan and CT scan. (Bone scan was yesterday; CT scan will be Monday.) I'm looking at one chemo treatment every other week for 8 weeks, and then something different every week for 12 weeks after that. Again, all of this decided before he even sees the scans. So...yeah. I'm fearing the absolute worst. My initial chest pain was likely the cancer in my sternum and ribs. Now my neck is stiff and my lower back isn't quite right. There's a chance it's in my liver as well; the CT scan on Monday will reveal it.

    So I'm terrified. But feeling a little bit better having read all of your stories -- especially the ones that include something like, "It's been X years and I'm still here." I still want to be here in 20 years, much less 3 or 5. You've all given me a bit of hope. Thanks,

    Laura

  • illimae
    illimae Member Posts: 5,650
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    lauawill, sounds a lot like me with the sudden lump and family history in their 60’s (mom and maternal aunt), that was back in 2016.

  • snow-drop
    snow-drop Member Posts: 526
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    Hi KBL, I was about to ask your bone biopsy, I hope it went well, I mean pain-free, and you’ll get a good result. Please update us with the news, sending vibes. (Since you started this thread I barely check on other groups! )

    I also have a good news, the mri showed stable!!!! Finally a good news after a while. A nurse made a mistake, when called me an urgent appointment, that was very stressful 24 hours of my life but at the end the good news washed it away!

    Have a nice weekend everyone.


  • candy-678
    candy-678 Member Posts: 4,144
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    I-beat-it- So no need for second opinion? Hope that is the case.

  • kbl
    kbl Member Posts: 2,793
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    lauawill, thank you for sharing your story. I'm so sorry you are here, but this group of ladies is really awesome, so any questions, please don't hesitate to ask. I'm sorry about the loss of your dad right before your birthday. I know how hard that is. I buried my father right before my daughter's fifth birthday. I always look at her pictures from back then and know exsctly which birthday it was. I was 33 then.

    I hope you do find comfort in this thread, and please keep us posted on how you're doing.

    I know this may sound weird, but looking back on my diagnosis, I am grateful I was de novo just because I can't even imagine how hard it is for the women who have a recurrence. It is scary knowing we're Stage IV, but there are women on here who have done great with their treatment. I'm still on my first line after being on the meds since June of 2019. I have not had chemo.


    I-beat-it, thank you for thinking of me. I'm a little, shall we say, tender today. I had to go in my husband's truck for a little ride, and the roads around here suck LOL. I came home, took some Tylenol, and am back resting in bed. I'll keep you posted.

    I'm so glad you are liking this thread. I'm sure we'll have more ladies telling us their stories as time goes on. It is sad but nice to know we're not alone.

    Congratulations on being stable. That's great news.

  • hjernt
    hjernt Member Posts: 20
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    Hello friends!!

    Welcome to the new posters! I have gotten a lot out of this 'group within a group'. I take comfort that ya'll are coming at this the same way I am and we truly have a shared experience being de novo.

    Update from me: This has been a week of appointments: Cardiology echo, MO checkin, treatment (infusion H and P) and then cardiologist follow up today.

    I have an appointment to have my drain removed next Tuesday. Fluid collected has gotten down low enough that I should be good for removal. I will be very happy to be done with the drain. But I know many women have 3 or 4 drains after surgery so I'm not complaining. It amuses me to think about how my husband would deal with one drain. I expect there would be a lot of wailing. Women are just amazing with what we can manage and still push onwards.

    MO was very pleased with the pathology from surgery. He still does not want to move forward with Radiatiob because the last bits should be taken care of by the targeted therapies to which I am responding 'very well'. He did discuss it more with the BS but has not changed his opinion. I defer to my MO because he has more experience with Stage 4 spread than my BS. I think the BS more often has patients that are one and done instead of ongoing treatment. I'm OK with this plan and am pleased to have had surgery.

    Hot flashes are better, although the effexor makes me quesy all day. I just started taking it at night and am hoping that will help.

    Echo looks good with nothing changing from last echo in April. Unfortunately my blood pressure is a bit high (can be caused by Herceptin) so Cardiologist wants to monitor it. I'll be buying a cuff for at home daily checks and recording. I am meeting with him again in 6 weeks to review. It is possible my BP is higher because I am still recovering and because I have a drain stuck in my side which is uncomfortable. He said that is why he wants to track it instead of prescribing something.

    That's the latest! I've been walking a bunch and using small weight for some arm exercising. Have to wait another 3 weeks before anything more but I've been enjoying the walks! I just have to get outside early to avoid the Texas heat.

    Hugs to all! KBL, I am thinking of you as you wait for biopsy results.

    And lauawill, hang in there. It is so so terrible right after diagnosis and then dealing with the loss of your father. It will get easier and you will find your new routine. I found it helped to have a plan. Good luck with your treatment!

    Lynn, I totally hear u with the whirlwind of finding Mets after already starting down a treatment path. And also, I went to a dark place with Stage 4 diagnosis. My husband was even worse. Since then and thanks to all the amazing women on these boards, I am looking forward to living!

  • kbl
    kbl Member Posts: 2,793
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    hjernt, that’s quite the list of visits. I bet you’re tired. I’m so glad you’ll be getting your drain removed. I have never dealt with that, but I’m sure it’s a pain. I’m so happy your treatment is going well. That’s great. 

    Thank you for your hug. Hugs back. We know the wait is the hard part, but I truly won’t be surprised if it is cancer and won’t be surprised if it’s benign. I just want an answer. You know we just need answers.  We can deal with what comes after the answer.  I used to work out all the time before diagnosis and have never stopped walking, but once I find out how my bones are, I plan to at least add yoga or something more to get moving again. 

    I hope your blood pressure regulates. 

  • kbl
    kbl Member Posts: 2,793
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    Thank you, JavaJana. I hope your new treatments go well.

  • lauawill
    lauawill Member Posts: 5
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    Howdy, gang!

    So after reading through a lot of your posts and looking at your diagnosis dates, I'm feeling like maybe this diagnosis does not mean the immediate end of my world. My world will be radically different from what I imagined, that's for sure, but I'm trying to stay focused on what I need to do today and in the immediate future to take care of myself, and set a few smallish goals for tomorrow. I'm looking at chemo through the end of 2020, at which point I'm going to stay up until midnight on December 31 not to ring in 2021, but to make sure 2020 actually leaves. I want to meet my new great-nephew next year (born in February 2020 at the beginning of the pandemic), get back to Wrigley Field to cheer for my Cubs next summer (assuming there's baseball and it's safe for me to be out and about), and see my daughter graduate from college in a couple years. Today is my husband and my 23rd wedding anniversary; I want to be here for our 25th, and maybe even take our long-planned trip back to Mackinac Island to celebrate. I want to be able to run a 10k again, or at least a 5k.

    I have an echocardiogram and CT scan tomorrow. Chemo is tentatively scheduled to begin on Tuesday, assuming the ECG comes back clean. I'm dealing better with the pain from the bone mets and hopeful that the CT scan will show that liver mets aren't really present. But even if they are ... I will deal with it. It's all I can do. Take every day as it comes and keep my mind clear for tomorrow.

    Laura

  • sondraf
    sondraf Member Posts: 1,631
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    Lauwa - glad to see it looks like you are coming to terms with things in your own way, and that is awesome. I mean, really, what's the alternative? :) In addition to hanging out with this super-select crew you may want to also pop into the Bone Mets thread and the August 2020 Chemo Sisters thread (under the Chemo section, not this one) for support and information. Good luck this week, and keep us updated on your progress!

  • Bliss58
    Bliss58 Member Posts: 938
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    Lauawill, welcome! I am on Xgeva and will advise having the nurse inject slowly to avoid nausea. I got that advice from the Bone Mets thread, and for me it was true. One time, a substitute nurse injected me all at once before I could tell her to inject slowly. It was the only time I felt nausea from Xgeva, otherwise, it's treated me well. After that, slow injection was noted in my record.

    You might visit another thread called "Life is not over with a Stage IV diagnosis - Really!" There we report all the good things we can still have in this new life. My daughter was 16 when I was diagnosed. Since then, I have seen her graduate HS, go to college and next week, we celebrate her 21st birthday. I've also been able to travel, celebrated my 25th anniversary and I'm expecting to be here for my 30th next year. I trust you'll be around for a long while, too, to meet all your goals!

  • kbl
    kbl Member Posts: 2,793
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    Lauawill, I'm so glad you've found comfort in this thread, and as Sondra and Bliss said, there are others that may help you along the way. I hope your testing tomorrow goes well. Pop in and tell us how it went.

  • lynn1234
    lynn1234 Member Posts: 90
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    KBL -Praying and hoping for the best for you on the biopsy result!

  • lynn1234
    lynn1234 Member Posts: 90
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    I beat it——stable is awesome!!

  • kbl
    kbl Member Posts: 2,793
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    Thank you so much, Lynn. I appreciate it so much.

  • jensgotthis
    jensgotthis Member Posts: 671
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    I was dx dr novo too at age 41. I’d never had a mammo but was sent for one when we notified the skin on the underside of one of my breasts looked a bit like the texture of an orange peel, My breasts were always lumpy and dense so when I would do a self exam, I felt like I had bumps all over. So, I trusted my doc’s exam instead.

    i started chemo right away and somewhere around the second or third week of that I was sent for a PET, which showed two bone Mets. My MO wanted to continue to treat me with curative intent (which meant I woukd likeky die of something other than BC) so I finished six rounds of taxotare and cytoxan, had a mastectomy and did rads to breast area and To my two bone met sites. I then started Ibrance and Letrozole.

    I continued to work FT but after about four years was battling such exhaustion that I went down to 60% time. I’m also a single mom and want to have time with my son. Travel is my passion and I’ve been doing as much as I can while I still feel good. I’ve been to Costa Rica, Iceland, Montana and Wyoming, Yosemite, Sequoia National Park, the San Juan Islands off Washington state and more.

    I did ask my MO for a timeline. He said I should have at least 10 years, and hopefully many more. I’m about half way through those 10 and that weighs on my mind. I try to focus short term as worrying only robs me of today’s joy (I do let myself worry, but I also pull myself out of it).

    I struggle with figuring out how much longer I want to work. It’s a good distraction and I work in philanthropy and grants so it’s purpose driven, which is meaningful to me. But, I’m nearly always tired....my MO though tells me I’ll be living with this for some time Sinai need to make sure ai can do so financially. Anyway, I’ve been lucky to have a complete response to treatment so far and live with no evidence of active disease

  • Bliss58
    Bliss58 Member Posts: 938
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    Jen, nice to see you here. Welcome!