I’m very happy to be there. I read a lot of stories about people with Metastase breast cancer. Thank you so much you give me a lot of hope. Thanks again
I’m 33, Diagnosed in 2022 stage 3 DIC, 5/19 axillary lymph node involved, ER+, HER -. I did 5months chemo, double mastectomy, radiation. I’m now on verzenio and anastrozole. I fell well so far. On my recent routine blood work my ca 27-29 goes up from 26 to 44. Liver enzymes level is normal, calcium level normal. I did a whole body scan
unfortunately Scans show multifocal bone metastases on my patient portal. My onc don’t tell me anything. She don’t talk to me about the new diagnosis and what is my next treatment plan. I don’t know what I suppose to do, I really need help?? Please
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life2990
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You need a more capable onc😩I have liver and bone .Have had it for seven years now.My oncologist tells me people can live for many years with bone metastatic disease.
There are many available treatments,your onc should have you on one of them.
Prayers for you to soon be informed,or get a new onc❤️👍
Memorial Sloan Kettering Cancer Hospital is in NYC, and has a remote facility in New Jersey. I'd definitely try to get an appointment there. You probably qualify for a second opinion visit an least. Then you might decide to be treated by that oncologist. Best of luck!
Please change your dr you need info and some explanation. They will change treatment most likely. This is my third med since sept 2018. I’ve never had surgery or radiation and No. IV chemo. I am stage 4 met to bones. It’s a rough trip. I wish you the best. Be strong!!!🙏✝️
I did my scan since Nov I finally talk to her after 3weeks. She ordered a bone biopsy as routine and have next appointment janv 26. More than 2months. That’s not fair
I don’t think it’s fair either. Too long to talk to you. I’ve never had a bone biopsy but scans every 5-6 months. I think if you feel that you should change then you should do it. I don’t know where you live but I’m in Texas going to M.D Anderson the last of January . Every treatment is different but I often wonder about that too. Let me know what she tells you. I wish you the best. I’ve found this forum very helpful for support.
Hello-my breast cancer found in aug 2018 but had spread to the bones already. 3 tumors in left breast. They haven’t been removed and I’ve done no I v chemo radiation or surgery. I am stage four. My treatment was my research and I chose ibrance and letrozole which lasted over three years then affinitor and evasion for less than a year-it was not working then for five month it was fulvesterant injections and no. Now I’m on xeloda and it’s working. 6 pills a day. I go to md anderson the 29 . Wish me luck. What is your treatment?
Are you saying that you haven’t had any conversation with your oncologist? All you’ve seen is the scan results on the portal?
Can you get onto a nurse at the clinic instead? She should be able to get you an appointment to see the doctor. Failing that, maybe your insurer has suggestions about an alternate clinic. You haven’t said where you go now but there’s lots of options if you want to change clinics.
When I was diagnosed as a result of an MRI for hip pain, it took at least four weeks for me to get an appointment at the breast cancer clinic. And I didn’t start treatment immediately either. ER+ cancer is common and considered easy to treat. That was what I was told and as they were recruiting for a trial they held off treatment but after a month or two they decided to start me on Letrazole. Subsequently I couldn’t go on the trial anyway but I don’t know why not.
The delay isn’t going to make much difference to the outcome because you’ve caught the progression so quickly. I can understand that you don’t want unnecessary delays as I wouldn’t either but if you can get an appointment the doctor will have to deal with you. If you don’t feel comfortable with getting assertive can you get a relative or friend to ring on your behalf?
When I was waiting to hear back from the clinic my general practitioner rang on my behalf. They said they had read her request for me to be seen at the clinic and they had decided they would invite me in for a review! To be fair I think that’s a process because I’ve never heard of anyone being refused admission to the clinic. If you fail to turn up to an appointment without advising them before your scheduled appointment then you’ll be removed from the patient list. I doubt that’s how your system operates but we have Universal Healthcare and there’s plenty of people wanting to be seen so patient cooperation is required.
Naturally if you don’t feel comfortable with your current oncologist you should get a second opinion but you haven’t actually had an opinion at all yet. It would surely be quicker to get that opinion if you press the clinic staff for an appointment. Doctors don’t do that part and all you need is a receptionist to organise it. Don’t take no for an answer although I honestly don’t think that will happen but you’ve waited three weeks notwithstanding the holiday season and it’s time someone sorted out an appointment to discuss the last scan with you. Harness your inner pit bull and ring the office number and tell them you want an appointment and when you want it.
I only see the result on the portal since Dec 20. I tried to call her since. She’s always busy with other patients and tell me she will come me back. I’m going to try to make an appointment with her like you said. Thanks
Yes, but you are going to MSK. None of what you experienced is right or usual. The only thing is that it is a bit of a trek from Rahway to Basking Ridge 45- minutes, and farther to the main hospital in Manhattan (1.5 hours). Not horrible. The only other National Cancer Center in NJ is Rutgers in Hackensack, also 45 minutes. I guess I am spoiled, because I live 4 blocks from where I am receiving Rx. But compared to others, you are fortunate.
The most important thing for you to do is find a new oncologist who has excellent expertise and will be responsive and attentive to you. if you’re in New Jersey, you have access to Memorial Sloan Kettering (both their main location in Manhattan and satellite location in NJ). They are one of the top-ranked cancer hospitals in the world. I was treated there in the past and they are outstanding - they have every kind of expertise you will need in your cancer journey, and they really take care of patients. Please call them and make an appointment so you can quickly get onto the appropriate treatment and live a long and good life! 🙏🏼💜
Hi! I'm Kim 43 Hormone positive her2- with Mets to like every bone in my body. When did you test that showed bone Mets? I would definitely call and ask some questions but from my experience, if you recently started the Verzenio, they are going to wait until your next blood test to see how it's reacting to the Verzenio. Where in jersey are you? My family is near Wayne and I'm about 20 minutes from Montague. Stay positive and definitely demand some answers. Where are you going?
I am so very sorry to read your news. This is a great site with lots of good information, advice and support. I agree that you should find a new oncologist. One who will reach out to you and discuss the findings and offer you options on a treatment plan. I have had bone only metastases for over three years and am on Ibrance and Letrozole and have done well so far. Sending you hugs and prayers. Hope you find a wonderful new oncologist.
welcome to the group nobody wants to "qualify" for! I'm a long timer with MBC--diagnosed in March, 2004, the month of my 58th birthday, so I'm just a few weeks away from 20 years with MBC and my 78th birthday! I agree with others here who've suggested getting a new onc and recommending Memorial Sloan Kettering. I live in rural Michigan and go to U of Mi for second opinion appts with bc specialist oncs. When I was first diagnosed, I had "extensive" bone mets. E +, P+, her2neg.. I'd had 3 mammograms in the 13 months before I was diagnosed and none of them showed the cancer! My coping included attending several BC and MBC conferences and learning all I could. The Metastatic Breast Cancer Network has great conferences and alot of them are in the East--my first one was in Boston, and there was a woman there who'd had MBC for 30 years! Boy, was that hopeful!!! And that was before the targeted treatments, like the Verzenio you're on! I got almost five years from Letrozole, over 9 from Faslodex (Fulvestrant) and then and then about five years from Exemestane. Last year lab work showed the cancer had changed to triple negative. I had Xeloda for several months last year and now just had my second infusion of Taxol yesterday. weekly treatments. I'm expecting my hair to fall out.....I'm much less bothered by that idea than I would have been in the first couple of years with this cancer. My insurance would help pay for a wig but I think I will just wear hats and scarves. For comfort. In the last twenty years, my daughter got married to a great young man, my older step daughter lost her 4 year old son to drowning and now has a great 13 year old daughter, my father and mother in law both died, and so did my husband's youngest brother. I've had alot of family support and great times with family and friends! House cats, dogs and a wonderful parrot. We are surrounded by woods where we live and see deer and other wild animals. So I have much to enjoy and appreciate. I hope you'll do well for years and years!
Thank you for this post. When I hear from people that have been 20 years it gives me so much hope. Last appointment I had, in addition to my regular Onc (who I love), I saw a resident. He told me there are pts on my drug (Herceptin) who are women from the original study 20+ years ago, still doing fine, still on same drug.
So happy to hear your journey! I need this as I start fluvesant tomorrow w Ibrance. I started on exemestane when bc went to bones. Now it’s not working. Have been stable for 3 yrs. Active lesion in iliac. What did you take with fluvesant? I’m nervous about the shot…tips? Thank you. Blessings gennene
So sorry you are in the position to discover this forum. The 1st lesson I learned through my journey is you have to be your own self advocate. I have switched Oncs twice and now at a NCI accredited institution with a younger Onc that will answer all my questions or find out the answer if not. Course some things are unknown. With my initial Onc I would show research from top cancer institutes such as Sloan Kettering and Dana Farber and it would be dismissed. 2nd I would always (at least initially) have someone else with you at your appointments. Keep in mind that cancer is never predictable, as you are probably already aware. Some Oncs make everything sound so simple. As LDR1 mentioned Sloan Kettering is a top notch cancer intuition. It is a great opportunity if you can take advantage of that as many are not so fortunate to have treatment options so close. As far as your tumor markers, they go up and down for many reasons. Many Oncs don't use them anymore or if they do they look at trends over a period of 3-6 months because they can be influenced by so many factors. I hate that you are here (nothing personal) but now that you are you can find a wealth of information and shared experiences. God Bless!
I am so sorry, this must be so scary for you and made worse by the unknowns. We need to call our MDs who are failing us - she has failed you if it has been 3 weeks with nothing from your Onc
Usually after any specialist books a scan they would book a follow up to discuss results - that is with any scan for any reason. I do not understand why you are having to chase the Oncologist to find out next steps.
Can you find her email online ? Be as pushy as you need to be. Call the office, call the nurse navigator, send a letter snail mail to her AND if you can find out online, send it as well to the head of Oncology at your hospital. This falls below acceptable practice standards.
It is unfair of her to not have a follow up to discuss results. I am trying to give your Onc the benefit of the doubt as to why she has not followed up with you, but there is no reason.
No matter what, know that MBC is such a scary thing to hear. But there are many treatments. This site helped me and is so hopeful to hear from long thrivers here. But the bottom line is, none of us can tell you next steps. Your Oncologist has to discuss. Pls let us know if you reach her.
Hello, I am writing from Romania, I was diagnosed de novo stage 4 a year ago, also 33 years old. I have a tumor in the right breast and hip and spine bone mets. Back home they started me on Verzenio 150mg two tablets a day, Letrozole one tablet per day, Zoladex for ovary suppression (an abdominal implant) every 28 days, and Xgeva injection monthly for bone mets (in order to strengthen the bones). My sister lives in Tennessee and took me to a consult there, at Tennessee Oncology to a famous doctor with 25 years experience, and she told me that here in the US the treatment would be the same to what I get back home. This is the standard of care now in the international guides.
Sadly with stage 4 they say it is not curable and when one treatment line stops working, they put you to another.
My oncologist ordered the Foundation One test, it is made on the breast tumor sample that I had from the biopsy, to see what specific mutations my tumor has, and it seems like I have PIK3CA, for which there is available another drug, so that would be my next line treatment if, God forbid, Verzenio and Letrozole stop working for me.
I did great on this treatment, mu breast tumor shrank to half after 3 months of treatment, my bone mets started to calcify, so hopefully there is no longer cancer activity, and I had no other progression since my last scans in December.
I also did some Ozone therapy and high dose vitamin C IV last April and this December. I take vitamin D around 6000 UI daily, and there are many things I read about like berberine, omega 3, enzymes, protandim etc. I used protandim and berberine from time to time.
I try to cut off sugar, dairy and eat as many vegetables and fruit as possible, I lost 20 pounds and was already skinny before, but I feel full of energy.
Did you have an appt with your doc and she didn't talk to you at all about the diagnosis and treatment - if that is true look for a new doc at a cancer center preferably someone who concentrates on breast cancer, get your records to that doc, get a second opinion, don't hesitate for any reason, hire the new doc if you like him or her if you don't get another opinion. YOU Deserve quality medical care And someone who listens to you And is compassionate.Let us know how it goes.
Have the bone biopsy. Bone marrow Mets are very rare at less than .17% of patients with bone mets but your cancer has progressed quickly so it makes sense to rule BMM out as quickly as possible. It is treated systematically just as bone mets are but it can limit some drugs. More scans and tests at this early stage are better than just following a protocol that might not be right for you.
Bone biopsy? That sounds strange to me. Many of us have bone mets, and I haven't heard people talk about bone biopsies. I had the FoundationOne liquid biopsy when my first treatment failed.
MSK is good, and if you can get to the NJ one, do it. I wouldn't waste any more time with this too busy oncologist who couldn't even call you when you got this scan with the news. My oncologist is remote/distant, but even she called me the first time I had a scary scan.
Rutgers Cancer Institute in New Brunswick is the first NCI Center of Excellence in NJ, and it is also a comprehensive cancer care center.
You should not be getting treatment at a hospital that is not both those things. The field is developing fast and you need to be seeing someone who is on top of it and attentive. We here have witnessed what happens when you go somewhere that is not top notch.
You are young, so I guess insurance is an issue. If you can get into a clinical trial (that is usually recommended by the experts), treatment is free although the testing is time consuming.
Bone mets only is the best news after the bad news of Stage 4 BC. Let's hope it stays there! So eat, sleep, and try to accept this development because so far, you are in relatively good shape. It is a SHOCK, but there it is and you will learn to live with it. We all have bad moments, but also good ones.
I am so glad you are going to MSK. You can also have Rutgers (I think it is called St. Barnabas something) as back up because it is a national center of excellence and a comprehensive care center.
Too bad it is a holiday week-end. I go to MSK in Manhattan for second opinions and was able to start enrolling and telling them what I needed on line. Take a look and see if you can get started on line this week-end. (The hardest part was getting my records from my primary treatment hospital. It wasn't that hard, but I had to go through a third party organization, sign releases, make the request, etc. Tedious stuff, but necessary.)
MSK will tell you whether you need a bone biopsy. I hadn't thought of bone marrow metastasis, but you would be having other symptoms (anemia, calcium in your blood, slow clotting, etc.) if you had that. As I understand it, an FES PET/CT can detect it, so you may be able to avoid a bone biopsy.
You will learn all these terms. We are all getting a medical education with this. I get a PET/CT every 3-6 months. The newer FES version, specific to testing for ER+ bc, is easier than the kind I get. (Only the big cancer centers have the expensive equipment to do the combined PET scan + CT scan, which gives a clearer picture -- literally. The PET shows increased metabolic activity in any spot that CAN indicate cancer, and the CT shows physical shapes, including tumors.) I think I got that right.
You are not dying! You have years. That it came back so fast is not the best news, but that you have bone only is. Also that you feel well and are asymptomatic.
One thing, though. You have been on hormone therapy since your initial treatment? Anastrozole? It didn't stop the progression, so that may mean you have the mutation, ESR1, that makes the estrogen blockers not work. You need that liquid biopsy. If you have that mutation, there are other treatments that DO work.
You are just starting on the diagnosis and treatment path. You will be fine. Save your anxiety for the next jolt. It could be years away. (I am five years in from diagnosis of mbc, was very sick initially, and am pretty healthy now. I do everything I want, a lot of dancing, and feel good.)
I don't have one that is useful. That is, there is no known treatment for it. It has a different pathway and, as far as I know there is little research looking for a specific treatment for it. You don't want that one.
I have been developing resistance to treatments pretty quickly - not super fast, but after a year or two. All of the standard treatments -- the aromatase inhibitors and the targeted CDK4/6 inhibitors have worked for a while, and I was NEAD for three years.
My oncologist says I develop resistance because the cancer has mutated. But it hasn't! Dana Farber and others have papers saying there are other reasons for resistance besides mutation, but my oncologist refuses to look at that research because it is not "standard of practice."
But that is me. There are other mutations that do have a treatment specifically designed for that mutation, and I was speculating you could have ESR1.
Great! -- I mean, nothing about this is great, but you already got to MSK, fast, and you got the biopsy, and now you know why Verzenio + letrozole wasn't going to be the best for you. So now you should get effective treatment. It is very quirky though -- people respond differently to the same meds, and have better or worse side effects. You have options besides fulvestrant and Truqap. It might take some tinkering, or this may work for you.
MSK saved my life. I live in upstate NY and have remote appointments. I have had MBC since 2009, and I am on a new drug starting Monday. TRUQAP. The only one in the Rochester Regional Health system to be on the drug. My local medical team works with the MSK medical team. My 27.29 is in the 500’s.
You need to work with a great team to improve your medical care. You are worth it. We all are worth it. Time for a change.
hi I know everyone said this but ya, that is totally unacceptable - I had an appointment literally 15 minutes after I called with symptoms, had a scan a couple of days later with results the next day and IMMEDIATE action with the next appointments for scans and biopsies and meeting with oncologist
Please go to MSK or if you are in south Jersey go to Penn’s Abramson Institute for Cancer. I had a fabulous onc there who has since retired. I am on a clinical trial at Dana Farber in Boston, a 2 hour drive one way monthly. They consult with my onc here in Portland, ME. Blessings.
I think you need a new dr. Don’t be quick to change bec of markers. Mine are currently at 238 and my dr is happy bec it was 1700 a few months ago. They had found a small liver area but then next scan it was gone. The dr told me sometimes the cells shed -the cancer cells and cause the markers to rise. I hope you can get some answers and I wish you the best.
Hi Life2990. I am sorry you are not feeling cared for by your Onc. It is scary going through this feeling alone and not attended by your docs. I am really happy you have joined all of us here. I can only say be strong and speak up for yourself you have a right to excellent care! I am in agreement you need to talk to a few other oncologists. Remember they work for us, not the other way around. And, in that patient-doctor setting we must demand transparency regarding our scans and bloodwork. And we deserve a full explanation of what everything means, so much of what is shared when it is shared is like reading Greek. Asking fur a second opinion is so important for us and absolutely okay. Good luck! Remember you (all of us) deserve compassionate, timely and professional care no matter our stage and life circumstances. You’ve got this and you have all of us right there with you when you talk with your medical team! I am sending prayers and thoughts of strength your way 🙏❤️ 💪🏻
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