De Novo Stage IV
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About radiation to bone Mets, the reason I got mine was that it was the only lesion that was active on my scan after having been NED for awhile.
Somewhat similarly in regards to breast surgery, my current MO thinks if I was NED everywhere else but the breast tumor was active, that would be perhaps a case where surgery could be warranted.
I had the mammogram a couple of months ago, they saw “focal asymmetry “ where my tumor was and all my nodes appeared normal size on sonogram. At diagnosis, I had one axillary lymph node positive for cancer on a needle biopsy. Mammo report said it was indistinguishable from the rest. No activity in breast on my last PET scan.
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Just letting SeeQ know we had a very close call from Eta yesterday. We had tornado warnings, heavy wind and rain. The actual eye hit right above us, so we got the bad side of the storm. Hope you didn't have any impacts.
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hi ,
My mom is facing the same extensive bone mets breast cancer. Can u plz guide wht treatment u went through
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hi Shahida, initial treatment will depend on the biology of her tumor - hormone receptor status and HER2 positivity. Some of us get chemo, some don’t. Some get other targeted therapies and some with estrogen receptor positive status only take a hormone blocker pill.
Does she have the report from her biopsy yet?
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shahida,
I am sorry to hearl about your mom. What are the details of her bc? For example, does she have IDC, ILC or some other type? What is her hormone profile? Treatments can vary based on a number of factors so what my treatment has been may not be advised for your mom.
I have never had chemo but had rads to the met on my femur. I have also taken all three of the Aromatase inhibitors over the course of the past 9 years. If you can be more specific about your mom then those with a similar diagnosis can chime in. This doesn’t that your mom will receive the same treatment, but it may give you a better idea. Take care.
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Hi, Shahida. I’m so sorry about your mom. I’m assuming this is her first diagnosis and she’s never had breast cancer before.
The beginning stages are very scary. The ladies have asked good questions. We need a little bit more information. I am on two pills right now, but it does depend on what her hormone receptor status is.
I’m thinking of you.
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42young it is huge success, congratulations for being Ned. Despite your MOs and mine have same opinion about RT , I would try my chance, ask them for RT. My bone met, the one that got radiated still shows uptake in pet scan, I have plenty bone meds! There is a study in md anderson radiation + targeted therapy (Mae participated perhaps she can explain better once she checks in), while you have access to Dana Fabre I guess you can ask to be in the study as well. Are you in ibrance + letrozole combo?
Shahida, for bone Mets, zometa (through iv) or xgeva shot under skin is suggested together with other targeted therapy which depends on Hormone receptor and HER2 status. Also it is good for your mother to take daily calcium and vitamin D.
My thoughts are with you ladies in east coast, please stay safe.
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Good morning everyone, illimae/Mae here. About the radiation to minimal bone mets, it's true that most MO's don't consider as a benefit to reducing cancer burden, only pain and getting it approved by insurance is tough, unless you claim to have pain. MD Anderson is studying how oligo patients do with systemic alone vs systemic plus radiation to the minimal mets. They've seen a survival benefit in this scenario with lung cancer and are looking at breast now too. I'm still in the trial, it's only been a few months but the trial doc says rads will kill the spot on my hip bone, which was the only location of mets in my body. My brain is another story, ugh, but fortunately brain and body are basically treated separately, so I still qualified for the trial. Here's the link for details.
https://clinicaltrials.gov/ct2/show/NCT035997650 -
It’s great that they’re studying this, Mae, and thanks to you for participating and for sharing this info
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I agree Olma, I totally support research. I can’t take much credit in this case though, it’s pretty low risk and that stable met woke up slightly, which is why my MO recommend the trial, had it gotten worse, I’d likely have gotten rads anyway. Fortunately, I was randomized to the rads group, which I had hoped for. The radiation itself was 3 sessions without a single problem or side effect.
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that’s great! It’s SBRT right? I had to do EBRT because insurance, so mine was 10 sessions plus the prep
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Yes, SBRT.
Question: As devastating as our stage IV de novo diagnosis was/is, do any of you feel like it’s almost better than living with the stress of becoming stage IV, if diagnosed at an earlier stage? I sometimes think it was better for me personally to skip the constant fear or having anyone expect me to get over it.
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Mae - I've thought about this and its brought me quite a bit of peace and acceptance, actually. I've had problems with my lower back since I was a teenager, even if I had been early stage and "cured", I probably would have ended up anxious a lot of the time over back pain vs recurrence. And after seeing my scans, learning more about how my primary is situated, discussing with the new MO, and thinking back about signs over prior years, there was a very, very short window for me to have caught this earlier than Stage III. I think about the high-impact crash I had on cancer boob in 2016 and wonder if that had any influence on rupturing a very small tumor so the cells were already in the blood stream, so IV was inevitable anyway. But who knows,right?
Im also glad to be free from the anger of having following slash/poison/burn protocols, done everything right, to only get mets in the end anyway a few years down the road. Or not even mets, look at some of the chemo or pain threads about lasting and debilitating side effects of chemo, both physically and mentally. Or the ladies in the hormone therapy thread who cannot tolerate the AIs and are in mental anguish over quitting them because of the pressure/assumption that quitting = automatic mets = death when it may not mean that at all.
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Yes, some earlIer stage women also have a difficult time with mastectomy and reconstruction after effects. Cancer is no bed of roses, Stage IV or not.
There is a certain comfort in “the worst has already happened” and not having to live with the uncertainty and/or to go through a hard time only to find out you didn’t “beat it” or “win your battle”.
About the impact to the breast before diagnosis...I also had an injury before my tumor showed itself, in my case just a couple of weeks before. I have always wondered about a connection and how being injured could have “fed” the cancer...not caused it, of course, but either sent it some blood and oxygen so that it had a growth spurt or, probably more likely, tearing of muscle or tissue so that it came to the surface where I could feel it.
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Mae: What a tough question, but me for me I'd rather had the opportunity of having my tumor caught at an earlier stage. Reason being, I may of had a chance to be one of the many who remain cured. With De Novo, the curative aspect is being robbed from us despite folks living longer, as a chronic disease. With that being said, there is no looking back in the rear view mirror. All I can do is stay focused in the here and now.
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I do wonder and am glad I didn’t have to suffer through having it and then going to Stage IV. They never would have found it anyway since I’m occult and they can’t find it in my boobs now.
The only thing is I still went through two pretty big cancer scares, one in 2013 and one in 2016 where they told me it wasn’t cancer, only to find out it was the whole time. I was able to relax a little between the years, but it might not have spread to my organs if they got it right the first time. That’s the part that’s frustrating for me.
I have a question. Have any of you had an MRI of your abdomen? I am going to ask for one again, and since my insurance doesn’t see it as necessary, I’m going to pay for it out of pocket. CT doesn’t catch any of my lesions because there are so many, but they’re all under 1cm. I need peace of mind to know it’s not missing more than just my stomach lesions.
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Thanks for the replies. Physically, of course I’d rather not be stage IV but mentally, I think I would have really suffered prolonged anxiety if diagnosed early stage.
I’ve never had a stomach MRI but then I only have a hip bone met, so CT of the body hasn’t found anything suspicious there yet. Good luck, I hope it’s nothing.
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Mae, it is an interesting question to answer. Since I diagnosed a year and few months ago, I learned a lot about this disease and different treatments. If my treatment started sooner, I would have different answer, but delay in starting treatment and bad treatment led me in different direction, if they started right treatment sooner my bone never fractured and lesion might not spread to my spinal cord. I mean even with stage IV I could be in better place that I am now. so every 2-3 months I have to mri of whole spine, and in the last one they couldn't catch Mets in my cord, they don't know if it disappeared or moved somewhere else. In my case the worst happened after initial diagnosis. As much as I hate this disease, if I had a choice of knowing when I was younger and earlier stage vs now and stage IV, I'd choose now.
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kBL, I had abdomen mri, it takes about 45-60 minutes, they put a metal shield on you, It covers from breast to lower stomach. it is a bit discomfort on breast with tumor in it, so don’t be shy to ask them adjust it for you. and would be good to put some towels or blankets between the shield and your body, helps to avoid sliding off when you breathing. I hope you get good results.
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KBL - I was thinking about you as Eta was making landfall. I was on my way to the airport. I had a great visit with my daughter and two of my siblings' families. Eta was staggering through the Gulf like a drunkard up until then.
Mae - it is a difficult question, but I think I'd have to say I would have preferred an earlier diagnosis, based strictly on the percentages. A disease that is completely cured 70 percent of the time, complications notwithstanding, vs a diagnosis/treatment that has immediate side effects that affect QOL and a prognosis that makes anything past 5 years questionable. I've always felt I was pretty in tune with my body and an earlier, lower-stage diagnosis may have led to an earlier diagnosis of the liver mets - which, in turn, may have offered different treatment options. Either way, cancer sucks.
I've had multiple abdominal MRIs with and without contrast - it's not really a big deal; the worst part is the requirement to hold your breath repeatedly.
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SeeQ, thank you. We got through it relatively unscathed. Can you tell me why they have done your MRIs. I know insurance has already denied it, but what I’m thinking is because my tumors are many and all under a cm, the MRI will pick them up before they’re big enough tobe seen by a CT scan.
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KBL - the first MRI was done after an ER visit that presented like a gall bladder attack. U/S and CT said gall bladder looiked fine, but showed something on my liver (and pneumonia causing the pain). ER doc said check it out, it could be cancer. Turns out it was a hemangioma - surgeon I saw for possible bx said "NEVER let anyone biopsy your hemangioma!" - it's still there and has not changed since 2013.
The next one was by GYN for enlarged uterus about a year later (it was noted in previous MRI, but I did not press the issue until then). Doc said likely fibroids, and also noted a lymphocele in MRI and followed up with another MRI a year later because of that.
The fourth MRI was done after u/s (incorrectly) indicated rapid growth of uterus (suggestive of cancer). MRI confirmed no rapid growth. I had a complete hysterectomy in 2016 -- large extra-uterine fibroid, no cancer. And still no explanation for lyphocele. Fast torward to 2019. Gyn noted elevated liver enzymes in bloodwork. Followed up blooodwork every couple/few months for a year with new PCM. In March, PCM ordered u/s due to elevated liver enzymes over the year (the last bloodwork included GGT, which was also elevated). Had U/S on a Tues, and MRI on that Friday; both showed one very large, one large, and numerous smaller tumors. Annual mmgs were clear, including 3D in 2018. Mmg after PET/CT scan confirmed small (15mm) breast tumor - low and close to chest wall.
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Thank you so much for the explanation, SeeQ. Wht a roller coaster of a ride that’s been for you. Goodness.
I’m going to ask to have one on my own for my own peace of mind. Since the CT shows nothing, I want to make sure MRI does too. I have many, many lesions in my spine, all under 1cm that do not show in CT. I want to make sure there aren’t any in my other organs besides my stomach. I don’t even know if the ones in my stomach will show on MRI.I appreciate you taking the time to let me know why you’ve had one each time.
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KBL - it seems reasonable. I think the MRIs are more specific. If nothing else, it would either provide a baseline for you, or confirm that there is yet another scan that does not catch that sneaky ILC. I hope it's the former, not the latter.
Adding -- it also seems plausible that the fact that the CTs don't identify the known tumors could support the doctor's (and insurance) decision for the test.
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SeeQ, I’ve been thinking about it more. I think I’m going to skip it for now. I’m feeling good. Why add more worry to the mix? I’m not having any symptoms that would signify there is anything in my other organs, so at this point, I think I’m going to leave it alone. My tumor markers are what I go by since they’ve been a good indicator. They are all actually high and have been high since the beginning, but they are lower than they were. I know there are many tumors, so that’s probably why they won’t come back to normal. I will keep this test in my back pocket for now. Thank you for your responses to my questions.
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KBL - also very reasonable.
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Another good article. Not necessarily about De Novo but the article provides some optimism, especially with living longer with MBC. I hope the link below works.
Monitoring Metastatic Breast Cancer Treatment Response: 5 Things to Know
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Just on side note, Adam Brufsky, MD, PhD, associate chief of the Division of Hematology/Oncology and co-director of the Comprehensive Breast Cancer Center at the University of Pittsburgh School of Medicine was interviewed for the article. Dr Brufsky is a phenomenal speaker, advocate for MBC. Wish I reside near Pittsburgh.
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Thank you, Tinkerbell. To think I had MBC for six years before they diagnosed it and that it spread to my stomach, I'm grateful to have beat the five-year mark not even knowing. I've had this disease seven years and three months, been in treatment for a year and eight months. I hope it continues to stay slow growing so I can enjoy a long time to come.
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KBL: I’m an optimist by nature as Dr. Brufsky has pointed out ,” oncologists have so many more tools at our disposal to extend a patient's life 5, 10 years and hopefully longer.” So yes, why can’t it be you and everyone else that can have a long time to come. It’s refreshing to hear something positive, inspirational.
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