Reading people's experiences it seems mets can develop a long time after the primary cause is removed and treated. How soon do some people notice odd pains that turn to to be mets. Is it all types of BC that can result in mets, or is HR + or neg any more susceptible than O and P + or neg? It all seems so random!
I was originally diagnosed in 2015 with stage 3. I had chemotherapy (6 cycles 3xfec and 3 x taxoter.) I then had a mastectomy followed by 15 rounds of radio therapy. I was out on tamoxifen.
April 2019 I was diagnosed with stage 4 with bone and liver mets. Bone mets are all over, hip pelvis area are the worst. I was given chemotherapy (6 rounds taxotere) and every 3 weeks I got herceptin, purjeta and my bone strengthen er zomita. I also started letrazole.
July 2022 I was told my treatment was no longer working and the cancer was spreading. I was taken off all treatment and I now get kadcyla every 3 weeks. It has got the cancer under control at the moment.
when I was first diagnosed I did get doxytacyl over 6 months. it worked well on the cancer. I was then getting herceptin and perjeta every 3 weeks and taking letrazole. my checkups were a good, cancer under control. my last check up was April and all was good. in June I started to get pain in my hip, it was the same pain I had in the left hip when I was diagnosed in 2019 so insisted I got a scan. it was just as well cause that's how I found out the treatment was no longer working, my next clinic was 27th October!!
I was told to stop the letrazole and I am now on kadcyla. I had my first one on Friday last week, so far no side effects.
I hope all goes well for you.
Hi I’m only 40 when diagnosed with breast , liver , lungs and bone and been stable on tablets only since beginning.
I feel ok most days , I feel psychologically drained worse than the cancer most xxx
Just to say I have bone mets and raised calcium levels rather than low calcium can be an indicator because the mets leach calcium into the blood stream. Of course I am not medically qualified but I know this from personal experience as raised calcium can make you feel ill. I have spinal mets and they caused really severe pain. At that time (three years ago) I had a CT which showed a lesion on my pelvis so I guess CT can show some bone mets. When I was diagnosed with primary cancer I was convinced every ache and pain was the sign of secondaries and I had a nuclear bone scan which showed only a bit of wear and tear. There are a lot of treatments for secondary cancer these days which do not involve infused chemotherapy and their purpose is to slow the progress of the cancer, which is not the same as palliative care. It must be a horrible time for you and I hope that it all turns out well for you and you can get on with your life xx
I was interested to read your post, I was diagnosed with bone mets and liver mets October 21 I’ve had taxol chemo which helped keep it stable for 6 months. I’m now taking g letrozole but nervous as just a tablet.
The reason I was interested in your post was you mentioned you had liver and bone mets since 2019……may I ask what treatment you have had in this time and what treatment you are currently on. It gives me hope that you have had mets for 3 years. I am 52 and find this to be hard to deal with.
Results could not have been better. No evidence of active disease. Such a relief and joy.
I pray all will be good for you too and that scan results will also be good.
Enjoy life. Enjoy your child. Enjoy every moment.
@4748 thank you for your reply and I really hope your results meeting went well today X.
I think when I go for my scan on Sunday I'll mention the specific pain points I have to the radiologist and will ask them what they think in terms of likelihood of any mets being picked up. Then I can follow up with my consultant and/or breast care nurse if we should get an urgent MRI arranged or something.
Since Tuesday I have managed to pull myself together at least a little bit and have started to have the horrible conversations with my husband about 'life' admin stuff. I've found myself taking more pleasure in some of the smaller things in life but have had a setback tonight as my 5 year old was quizzing me about when I'm going to be better. That was a huge gut punch to me 😢.
I know that the above sounds very negative of me given that I've not had any further results yet but as a lot of people on here say, you tend to know your own body. That said, I would obviously love to be proved wrong and just happen to have developed osteoporosis or arthritis early or something! However it just feels increasingly unlikely.
Hi KChest. In my case CT scan did not show my mets in T9, it was the MRI that indicated it and the Pet scan. I was stage 1 for 4 years 8 months. When diagnosed with stage 4 I thought my life would be over soon - it is 2.5 years since my secondary diagnosis, and, asides from symptoms from medications I live a full life at 53 years old. I will send you a photo of me at my son’s wedding in a few weeks ago.
I do struggle with some private issues that have been caused by the depletion of oestrogen. I suffer with tinnitus now and from a painful right upper limb which I am praying will not be mets.
Presently I am in the Uk. I had my Pet scan done Wednesday and I am going to the Royal Marsden for results today. Today is a difficult day for me emotionally - the uncertainty, but it has to be done. How do you do this? I am asked by those that know me, I cannot do much, it is my faith in Jesus Christ, knowing that being stage 4 is not the only condition that labels me terminal but the fact that the human being is terminal from the day we are born. It is knowing that my spirit is not sickened, my spirit is eternal and that one day it will be my spirit that will live forever in the presence of God Jesus Christ in whom I place my trust as Lord and Saviour. Of course I want to live and of course I want to see my second grandchild born next February. I want to see both my grandchildren and more to come grow up into men and women after God’s heart. I want to live a fulfilled life beside my husband and enjoy the life God has given us.
I'm new on this thread but looking for a bit of advice. I was diagnosed with primary breast cancer in June this year and so far my only treatment/follow up after diagnosis was mastectomy with immediate recon which took place in August.
I had a meeting with the consultant who gave me my diagnosis this week and he informed me that one of the five lymph nodes removed during the surgery had cancer present so I'm going to be sent for lymph node clearance and a full body scan now.
The thing is, I've been experiencing some upper back discomfort that I'd put down to really poor posture for a little while and this morning I woke up with pain in my hip/glute area too so I'm 99.9% convinced now that actually I have bone Mets. I have a couple of questions I wonder if anyone here might be able to answer?
Will the CT scan I'm due to have on Sunday be able to pick this up or will I need an MRI?
I had some blood results from a general health check in April that indicated slightly low blood calcium levels. Would that be consistent with bone mets (I'd mentioned this result to my consultant at my diagnosis but he didn't do anything with that info).
If there are bone mets am I likely to still have the lymph node clearance or would treatment just move to chemo/palliative?
I'm holding it together just now but I am petrified inside. I'm only 39 and have a 5 year old son who I desperately want to be here for
Hi Stargate re your message. Yes I was taking a Chemo tablet but it hasn’t worked so jus have the injection in my arm for the bones, results from last MRI were not good more Tumoursin my Thorax, Oncologist has recommended Chemo on the drip and has given me 6 weeks to come to a decision😩 can’t make up my mind I am 77 now and feel that my body won’t take it, anyway I just keep going like we all do on here. Good luck
Hello Lesley. I’m sorry to hear your news. Hope the tablet contains your cancer. Like you I’m hoping they find something for the young people getting it. It’s heartbreaking when someone young, especially if they have a you d family, is diagnosed with this. Bad enough for all of us, but we older ones tend to have financial stability and no responsibilities, which I think makes it a bit easier.
I’ve been following (loosely) the development of ErSo, a drug they think might actually kill the cancer for Sbc and ovarian cancers. Very early stages, human trials may take place next year but it gives hope. Being developed in America, a facebook group are pursuing and following developments and pushing for early testing/approval there. Can’t find anything on it in the U.K.
Too late for me by the time trials have taken place and NICE approval is given, I’m 71, Sbc with bone mets, and on palbocyclib, anastrazole and Zolendronic Acid. It has worked for the last 2 and a half years for me, but new small nodule near my spine on the last CT. Had a single blast of radiotherapy the beginning of June, as pain management which has worked wonders, hoping it may have blasted the nodule too!! Though doing that was never mentioned with the radiotherapy. 🤞crossed for you with the tablet, look after yourself.
Sorry to hear your news, is the tablet the chemo tablet you are going to be taking? My mum has an appointment with the oncologist Friday to have a discussion. She doesn't want to have chemo either the IV one .. hoping they will give some kind of treatments. How are you doing? x
Hi so sorry to hear about your Mum. I have just been to the hospital for the results of the MRI last Monday I have bone cancer from the breast cancer I had 5 years ago, the results were awful the tumours have got worse and I have more in the middle of the spine, been on Paplciblib , Fulveresant and injection in my arm every month but now the treat ment isn’t working my consultant is marvelous and she held my hand and said we will put you on another treatment she said I could have Chemotheraphy but I don,’t want it so I am going with the tablet apparently it stops the cancer from getting any further give it another go I am 77 years old and feel so sorry for the young people getting this b——-d desease. Hope you Mum will be ok tell her to keep fighting.Pam.x
I’m 69 yrs and have recently been diagnosed with secondary Brest lung cancer (primary 6.5 yrs ago) HER2 positive
Had my third Phesgo injection yesterday and started third month of Exemestane pill. Scan booked for July and results August. Oncologist seems confident that if these drugs aren’t working he has other options to offer me. I’ve lost over 1.5 stone since being diagnosed. My goal is to be on planet earth for many more years! 😘🤗
That’s appalling. I had a similar experience at a small cancer unit in December 2019, but was transferred to The Christie when my gloomy consultant felt he couldn’t do any more. What a difference. By then it was Stage 4 incurable with bone mets, they could manage it, the medication would stop working at some point but there were other options when it did. I listed my previous experience with dates, appointments stretched to the absolute limit and beyond, overcrowded scruffy waiting rooms, etc. to my MP, and she took it to the Minister for Health. We need a properly funded NHS where staff have the time and energy to support us. I hope your change of hospital is as beneficial as mine has been.
Over 2 years on I am still on targeted therapy (Palbocyclib and Anastrozole). The Palbocyclib was reduced as I had a period of being utterly exhausted, Letrozole was changed to anastrazole after a bad rash, my bone strengthening injection was changed to a Zolendronic Acid infusion after a small local rash. In April this year my CT showed something near my spine, so I have had a detailed MRI and it is a small probably cancerous nodule. The other mets are still stable, so for the time being I am staying on the targeted therapy, but it will be reviewed at my next scan.
I send an e mail to the Christie MacMillian and consultants secretary a week before my consultation, asking questions and telling them how I am generally, and soreness or pain, any side effects (very very few). The consultant has my e mail to refer to, as do I, in case we miss anything. It works well for me, it’s my way of keeping some control as I have brain fog. I am still having telephone consultations at present. I was offered a single blast of radiotherapy as pain control in response to my last email/the new nodule, had a consultation on the Tuesday, a CT and check for tattoos to use to line up on the Thursday, and the radiotherapy the following Tuesday. They said it wouldn’t work, if it did, for 2 weeks - I woke the next morning and my body straightened up for the first time in months. 2 weeks later the soreness has almost all gone - almost. I feel amazing. It can last up to a year, I will just enjoy the huge improvement it has made for as long as it does.
There are options, don’t let anyone tell you and your Mum otherwise. Wishing for the best outcome for her (and you).
thank you for your message it means a lot. That’s such positive news that you are four years on from secondaries in same places as my mum .. that’s really lifted my spirits and so glad you have had good scan results.. it’s all so scary and it’s not even happening to me . I want to be strong for my mum and support her just so scared of loosing her. I have booked a weekend away every month till end of year to all the places she likes to go so she has things to look forward too .. I have made notes of the treatments your on so I can ask questions when we next see someone .. I really appreciate you responding and telling me about yourself . I saw my mum earlier today and she said we should talk about end of life care after yesterday and I just went to pieces! But tomorrow I am going to Go and see her and show her the positive messages I have got and try and get her back in fight mode xx
Hi Gina G
thank you for responding it means a lot and thank you for the name of that bone strengthening injection. I will write it down and ask about it when we next get to see somebody. I feel a bit more uplifted after reading the replies, I haven’t been able to go to work today as was so upset after yesterday! Spent most of the day crying! Xx
thank you for responding it means a lot, they said they will be in contact with a date over next few weeks for MRI scan to see best place in spine to do biopsie then week later do the biopsie then will refer her to Weston Park hospital (in Sheffield where we live) and that she probably won’t go back to The Hallamshire hospital again. Where we were yesterday .. I just felt totally down after yesterday as reading all the posts on this site , I know everyone is different and will respond differently but I read there are lots of treatments that can be tried but they just didn’t say that .. and that’s what’s been keeping me going that it’s not an immediate death sentence .. and just hoping I have my mum around for a bit longer ., I keep praying for two years! Obviously I want her around forever but that’s not realistic .. but I wan to make memories and make sure she is living her best life now while she can xx
Hi stargate totally agree your mum has been treated so badly I'm 4 years on with secondaries in both lungs pelvis and base of spine on letrosole and palbociclib plus bone strengthener zometa . You can phone bcn on this forum for support. That nurse was so wrong about bone strengthener I was told all sorts of conflicting things . I have only had ct scans for mets and all stable. As the others said ask for second opinion if you aren't happy . I'm 67 and lots of people on here living so much longer with sbc. I have been told when palbo stops working other options available orally or monthly injection. The treatment is nothing as bad as chemo was for primary in respect of side effects. Hope you get some decent support and treatment an for your mum. Sending love and positive thoughts Liz x
I cannot believe you were treated like this and yes, I believe there are treatments for you mother. I found the comments from the nurse particularly concerning and suggest she reads up on latest research and what is currently available. Please push for why they are denying your mother biphosphonate (bone strengthing injections). This will help with the pain. Yes they are given for cancers which are at risk of spreading to the bone.
So, please bang a few heads together (metaphorically). Because you and your mum have come this far in her journey and chemo/ anti cancer meds have adapted and progressed as people now live longer with their cancer.
That’s awful that the oncologist and nurse made you and your Mum feel like that . Have they given you a plan for a way forward ? There must be some treatment they can offer ?
Obviously everyone’s circumstances are very different but we have a community champion who has lived for 16 years with bone and lung mets . If you are not happy with their approach ask for a second opinion .
just looking for some advise / positivity.
My mum whose 73 has been diagnosed with secondary breast cancer, 8 years after primary. She’s been in a lot of pain since January and lost two stone .. loads of tests and finally chest X-ray which picked up tumour in lung, in the lung lining and the chest wall and rib. We went to the hospital yesterday to get results of her bone scans etc and they said there are also mets in spine and pelvis. They want to do a biopsy in her back and MRI scan to see if it’s acting the same as primary . The consultant seemed very doom and gloom and said we will do all we can but it’s widespread. We were then left with the macmillan nurse and she said you know it can’t be cured which we knew anyway. I then asked about treatment and my mums on letrozole last 8 years but obviously it’s not worked. My mum said she won’t have chemo again and I said to the nurse could she explain to my mum that the chemo wouldn’t be like the first time and aggressive treatment and it’s more about being able to keep her as well as they can for as long as they can etc and also tablet form and won’t loose hair etc. and the nurse said she didn’t think my mum would be offered chemo then I said what about the bone mets and I had read people having some kind of bone strengthening treatments and she said they don’t do that for breast cancer I said I have read all the online forums and people are on those treatments .. my mum left the room with the mindset it’s game over and no treatment is going to be offered and that she hasn’t much time left .. I am frozen with fear as I can’t bear the thought of loosing my mum .. I just wondered if there is anyone out there of the same age as my mum that can offer me any hope of my mum being round a while yet and what treatment could be offered and why chemo won’t be an option? Thank you all xx
Spoke the oncologist a week before the scan on 29April and that seemed to trigger two more appointments- one with the breast unit at the end of may and another with the oncologist on7 June-not sure if this usual or because I mentioned the pain, and I hadn’t had the radiotherapy, but until that appt I had heard nothing since Jan!
Fingers crossed for you that the bone scan is negative xx
I have been speaking to a professor at the Royal Marsden and believe bone MRI is now best practice for detecting bone mets. So if after your radionuclide bone scan you are still concerned speak to your Oncologist about having a bone MRI maybe?
Also wanted to say, if it has spread to your bones. Some Oncology centres are now offerering SABR (Radiotherapy) for oligometastases of the bone (up to 10 areas I believe) which in some studies has shown to improve overall survival.
So there are treatments out there. We just have to keep looking, keep hoping and keep sharing information xx
Mickey140 and Dragoncarine-thankyou for your prompt replies! Yes, I had the scan with the radioactive injection, just have to wait now, to find out, but been getting various pains in different areas of my body and I didn't sleep well imagining all sorts of scenarios!
Maybe if they said that so many breast cancers then went on to metastasise in the bones and other places more people would not forego their mammograms-I have always had mine, even as elective after 70 and that's when it was picked up! Deep breaths now and try to relax!
Replying to Tappin
Yes it's scary, but you will find many of us live with secondary breast cancer in the bones for many years. Yes it is very common, I believe 1 in 3 breast cancers will spread and of that most are in the bones. I was diagnosed with secondary breast cancer in bones and lungs in April 2017 (after finishing my treatment for primary on 2006).
Firstly, there are loads of reasons for pain and it may not be signs of your cancer spreading. You are so fortunate to be getting a bone scan, you will also I'm sure hear hundreds of stories of missed bone mets because pain was dismissed.
Main treatment for bones is some sort of bone strengthener, most people seem to get Denosumab which is an injection under the skin (not in a vein) - I get my husband to do mine at home which is a lot nicer than going to hospital. If pain is severe you may be offered radiotherapy to blast the particular area - I personally found that really helpful with my 2 worst areas. Then you should also investigate pain relief, word if warning here, you may find your oncologist isn't the person to talk to about pain as he/she is only interested in treating the cancer. For me it was my GP that sorted that aspect out, others have used pain clinics and/or local hospice.
Please try to be calm until your results from scan come through.
Anastrazole stops the production of oestrogen and can cause bone pain, so check with your consultant on that too. It is listed as one of the possible side effects. I have mets on my ribs and ilium,
Stage 4 sbc, incurable and inoperable, and have bone pain. I am on Palbocyclib and Anastrazole as targeted therapy, which has worked really well for me for over 2 years now. shrinking the tumours and stopping it from moving elsewhere. I do have bone pain, and have just e mailed my consultant to ask if there is an alternative, but I think the alternatives are taking the risk of stopping it or taking the risk of changing treatment. There doesn’t seem to be a lot of info around about the use of it, other than that it can cause bone pain and some suggestions to manage it.
If you are having a PET scan prepare yourself for it, it can be quite scary seeing a nurse come in fully PPEd with a little metal box to hook up to you and having to double flush the toilet for 24 hours, but it did pick my mets. Good luck, fingers crossed it is something and nothing.
Am on my 5th month of Letrozole, following lumpectomy for 2 foci (2mm and 1.2mm) stage 1 DCIS and 4 clear lymph node removal, and I have been getting pain in my collarbone above the left breast. I mentioned it to the oncologist on a followup last Friday and I have now already had a radioactive bone scan. I am terrified it is now bone cancer! I had no idea it was so common following BC! What treatment is there for this? I didn't have the 5 radiotherapy treatments as the 'window of opportunity' was closed due to the time between my last follow up with the bC team Dec. 3rd and when I spoke to the oncologist on 10th Jan. because I had asked for a second opinion before deciding.
I thought to bump up the bone mets thread! I used to find it very helpful/useful ! 😊
My mum has bone only mets and wondered whether any of you ladies (or gents) experienced high inflammation markers in the blood?
If so, was this due to an infection or disease progression?
Many thanks !!! Xxx
Thanks so much for that information xx
I'm very new to all of this and feel like I'm stumbling around in dark a lot of the time.
People like you and Daisy have been really helpful and inspiring. X
I'm glad your feeling well at the moment and your disease is stable. Long may that continue.
Hi Daisy, that sounds promising.. hopefully we will hear something by Christmas re moving to human trials.. they won't have a shortage of volunteers anyway folk will be queueing up!
I'm completely wiped out today haven't left my bed, 3rd vaccine yesterday I've taken a reaction. Sick all night long, chills and fever. The joys eh...
After I posted yesterday I did get a reply from Bayer. I think its a generic reply but it does say they are hoping to update by end of the year. See below
Thank you for your enquiry regarding the ERSO program. At Bayer, we endeavor to move our compounds through development as quickly as possible, and at the same time have to take prudent steps to ensure the compounds are safe and have the potential to provide the benefits we are striving to achieve for patients with unmet medical needs. Because of these necessary steps, the drug is not currently available for trial in humans, but we hope to be able to provide the community an update on the status of the program by the end of the year.
Thanks Jools. I have just shared again too on Macmillan. I have also emailed Bayer, no response but we have to try don't we!
Hi all, last push to get the ErSO petition to 15k signatures. I believe the creator of the petition is planning to send to Bayer at that point.. link below. Can't do any harm!
Hi there Jane
I'm so sorry to hear about your diagnosis, I'm a year in and although it's a scary ride, I try not to dwell on the negatives. I'm feeling pretty good on my current meds, which are palbociclib, letrozole and denosumab injection, which thankfully so far have kept my bone mets stable. I've noticed some new drugs emerging, including for example, Elacestrant , a type of SERD. Another new drug to become available recently is Apelisib (piqray) which is dependent on PIK3CA mutation, and is given with fulvestrant. Also I have read about Capivasertib which was in final phase trials I believe. Reading about these new emerging treatments keep me buoyant and positive, even if I might not qualify for the meds it's all a step in the right direction! There's also a very exciting new compound being developed by Bayer called ErSO, which hopefully will be moved to human trials soon. There's a petition on this forum which has attracted almost 15000 signatures asking Bayer to move forward quickly. They have already said they are not going to sit on this drug, and the scientists working on ErSO have said to use the term 'game-changer' doesn't even cover it!
I hope you settle into your treatment plan. I've found these forums invaluable for support and information.
Take care and stay strong x
I am sorry to hear about your diagnosis x
I am newly diagnosed with breast cancer that has already spread to my bones. In your post you mentioned 3 new drugs that have become available since your diagnosis in October. Would you mind telling me what they are please? As I am just starting on my journey and want to give myself the best chance possible.
As they say knowledge is power!
So, I'm trying to make sure I don't miss out on any potential active treatment.
Hi Umi I had a few issues initially when starting palbociclib mainly gastric ie with nausea and loose bowels but started taking lanzoprazole 15mgs the oncology dept recommended this and it helped now just take it occasionally. also take palbo at night with small snack find its better for nausea and take letrosole at lunch time its also recommended to drink plenty water. Never had biopsy of and secondary tumours I had all lmph nodes reved at initial diagnosis in 2004 in left axilla as i had 2 nodes affected when I had primary tumour in left breast. Hoping your Mum gets on ok I stared on 125mgs palbo but now on 75mgs due to low neutrophils and this is keeping things stable been on this dose for over 6 months. Sending love and positive vibes Liz x
Thank you for sharing your experiences and treatment info with me. My mom has couple of lesions on her spine and enlarged lymph nodes on her arm which she will be getting a biopsy for. She was prescribed the same drugs as you are taking now. She is also going to see a radiation therapist to see if she would benefit from that. I was wondering if there is anything she should know about the pills like any tips about managing the side effects? I was also wondering if they did a biopsy for your spine? They never did for my mom.
Thank you so much again. I really appreciate it.
Hi Umi Sounds like it could be target therapy like palbociclib ribociclib or abemeclib I'm on palbo and over 3 and a half years stable on palbo plus letrosole which is for hormone positive bc which is known as er or oestrogen receptive or +ve. I was never given a time scale on how many years thankfully so many new treatments and people living with sbc as a treatable condition although not curable. I look at it like that. Hopefully you get some clear info from oncologist or is there a breast cancer nurse you could speak to. I was offered radiotherapy for secondaries in pelvis if it gets worse. I have secondaries in lungs pelvis and base of spine. Sending you love and positive thoughts x. Liz
Thank you for a very informative response. I have no idea what type of cancer it is. The oncologist didn't tell me any of that. She said mom will be getting radiation therapy and a hormone pill as well as a chemo pill. We have an appointment on Monday so I will ask her. I will also look into cancer charities you mentioned. I appreciate your time and all the information you provided. Means a lot. Thank you! Best of luck to you on your journey. I am praying for a long and happy life for us all. 💖
Thank you so much for your kinds words. I'm glad I found this forum. I am thinking of changing her oncologist but I don't know if that's a good idea right now.
Thank you again for responding to me. I was feeling very overwhelmed that day but I am better today. I wish you all the good luck in the world and my prayers are with you all.