The moderator has added a sticky post to suggest suitable alternative places - waiting for tests and results or ask a nurse were two places but you can have a read of the post to check.
It’s just having secondary breast cancer is very different to having primary - we have different treatment, issues and concerns. A lot of us feel sidelined and marginalised from conversations about cancer as it is - which mostly tend to focus on primary cancer and recovery. People often find it difficult to engage with us as the fact is we are incurable and that’s not a comfortable conversation for many people to have. So we really value having safe spaces to discuss issues and share concerns.
The fact is we are basically the worst nightmare scenario for many primary ladies - I know as I was once one myself. I remember getting my diagnosis age 26 and thinking that was it I’d put it all behind me and I could forget about it and move on. Sadly that wasn’t to be. But we are where we are hey?!
I really hope that everyone using this forum is able to get the support that they need. But just to make sure they ask for it in the right places. Xx
Last post I promise! However, it maybe helpful to know that when you tap in the search bar ‘Possible bone mets’ or words to that effect, this thread appears, without any clarification (well not that my lousy eyes can see on my phone!). Absolutely get what you’re saying Pawsome and can understand the distress this may cause. Hopefully it can be resolved by the site to make sure it’s clear and further distress avoided. X
I can understand your feelings Pawsome - it would definitely be a kick in the gut to have people reporting their relief at not having secondaries in this section - a bit like my friend who kindly rang me to tell me her mammogram was clear when I was going through treatment( but on a much lesser scale ! ) .Im just not sure where people who have these worries currently fit in the forum layout though and when people are anxious they just post anywhere to get it out there .Maybe as Community Champions we can remind people about this - but there needs to be somewhere to signpost people to .Also apart from Nicky there are very few secondary Community Champions so not much presence here to monitor .x
It’s no problem Janey please don’t feel bad.
But I’m afraid I’m going to disagree with you Nicky. I use this area of the forum to interact with other ladies who have a secondary BC diagnosis to get advice and support from other secondary ladies. Whilst I’m pleased when primary ladies who are worried about symptoms have tests that come back all clear I also find that quite insensitive to us stage 4 ladies. As the forum moderator has said there are specific areas of the forum where primary ladies are able to post and ask questions if they are worried about symptoms of their cancer coming back. That then gives the option for us secondary ladies to comment on it if we wish but as it’s not in our area we don’t have to see it if we don’t want to. I am not alone in this and have spoken to other secondary ladies offline who have felt very upset and angry about this area of our forum being used like this.
wishing everyone the best xx
Thanks Nicky. I think I’d forgotten how to navigate this forum! Could do with a section on worried about secondaries maybe. I bounce around different forums, as I’ve had 2 primaries and on a watch for a third - all different! X
Gosh ,I would hope that people are ok with anyone needing support posting anywhere ? Hardly what you think of when your are anxious - " where's the right place to post.We try as Community Champions to point people to the most appropriate place to post but sometimes it's not obvious where it fits .Where are these new threads I can't see them ?
Just to say I don’t think there’s any need to apologise as I don’t see that it’s a problem as you are discussing your anxieties with other forum members, it’s hardly ‘off topic’ It’s not obvious, other than the 2 threads that have now been created (which I think aren’t at all obvious threads to use) where you would ask another secondary BC person about your scans and what to expect and how to deal with the wait for results.
It’s a shame that the forum is divided (on the front page/screen) into sections with the secondary BC people only getting one section that appears to be the one to use to ask secondary BC specific questions . I only ever come to the SBC section, and rarely use any other sections as they are all distinctly populated mainly by primary BC forum members with the occasional SBC forum member. I do occasionally see a post that I respond to with advice but generally keep to this the SBC part which is a much smaller part of the whole forum, and doesn’t have so many sections or heading to post under. Which is why we often post a question/anxiety/result in an existing thread.
So - bone mets ladies.... How are we all doing? Just wondering if anyone had rads to their sternum area for pain control even after treatment has shown that the bone is healing? My pain is a lot better since starting treatment but I have a stubborn soft tissue tumour pushing right into my sternum that gives me a bit of pain. I’m on palbo, letrozole, zoladex and denosumab xx
Just back from seeing consultant. So lucky with the team here. No answers but reassured they’re on my case. More bloods taken and bone scan she hopes in the next 7 - 10 days. Back to clinic after and hope anything sinister can be ruled out. She mentioned it could just be an old injury I was unaware of, but won’t take chances. Have decided not to go back to work today, feeling a bit wobbly X
Ahh Kate I'm so glad to hear your great news, what a relief for you! You are so welcome to the support xx
I know what you mean about sitting around at home with nothing to do all day, it really is the worst. I am also my own worst enemy when left to my own devices with nothing to do and no overall purpose. I joked to my parents the other day that retirement can't be easy!
Stillhere - I'm glad its some help and you are quite right, as professionals they can't get emotionally involved and it must be a difficult part of the job for them when its not good news. I have noticed my Oncologists' face light up with a smile when I have told her I'm feeling well on whatever meds I'm on and its those subtle things that let you know they do really care even if they don't always show it xx
To all the ladies who have helped me over this last week or so I want to say a huge thank you for your support and words of wisdom.
I phoned my breast surgeons secretary this morning and she told me she would dig around to try and help me. She just phoned back to tell me both my MRI of my neck and my bone scan look within normal range so no further action is required and I dont need to be discussed at the MDT meeting.
I feel a massive sense of relief. Now I just need to see if my gp can help me find the cause of my problems and pains.
Lots of love to you all and I wish you the best xxx
Your reply was very reassuring and I agree with what you say completely so thank you for helping me try and snap out of it. I'm my own worst enemy.
This week my hubby of off work so hopefully he can help keep my mind busy. I've also still got the last bits of school uniform to buy for my girls ready for starting back at school so focusing on that will help.
When I was originally diagnosed with breast cancer in 2013 my girls were 6, 2 and 5 months old so they kept me focused 24/7. Now they are 13, 9 and 7 and very independent little ladies so I find myself often sat alone and that doesnt help with the mind going into over drive.
I'm very grateful for you all
Your post is reassuring Gillyflower, sometimes a little knowledge is a dangerous thing because every look passing between doctors or the way you receive a phonecall can be interpreted as bad news. It's more likely that the team is snowed under and focussing on many cases.
I had most of my treatment at a specialist cancer hospital. I think that MDTs were more common there simply due to the large number of professionals that were involved with your care. I also felt that I had got to know the Consultants very well after so much treatment but realise that they have to maintain a professional distance. It would be too easy to be emotionally involved.
Hi Kate, don't apologise or call yourself crazy, what's crazy is what we have to deal with, not how you're feeling! xxx
I used to work in a hospital doing discharge liaison work and obviously since primary diagnosis I've learned a lot about how the medical professionals deal with things and some of their internal processes. The healthcare staff are often so busy with such high caseloads, your case is one of many and whoever you happen to speak to in the moment won't be recalling all the history, facts or information of your case, which can lead to uncertain/changing responses from them and lead to your anxiety being ramped up to 120%.
So the best bit of advice I can offer is: don't even attempt to interpret "what it could mean" when they are vague on the phone, when they want different areas to scan to what you expect, when they say your case needs discussing at MDT etc. Sometimes nurses or consultants will say that they'll get something done urgently for you - I've had experiences where this has simply been that in that moment, someone really wanted to help me get answers as quickly as possible to alleviate my anxiety...but they have no idea that when they use the word "urgent", we then interpret this as "BAD NEWS PANIC ALERT!!"
As far as I know, MDT's will discuss any cases for patients currently active (ie. new patient coming into the department, or where results have come back from routine or requested scans, or where decisions are needed to discern what is potentially going on with a person's disease, or review progress on a particular treatment plan). Even people with stable disease can still get discussed at MDT, it really doesn't always mean that there is something to worry about.
In the meantime, I would really encourage you to find a way of relaxing so that you can de-escalate the anxiety to a more manageable level. You're going through enough as it is so you need to be kind to yourself as much as possible! Sending hugs and hope you get the answers you need very soon xxx
I'm quite sure my breast surgeon has switched off emotionally. My oncologist was amazing but she signed me off because I'm under the surgeon's care with a promise to be there if I needed her. I'd love to make contact but I dont think at this point theres anything she can do or say to help me out.
I think I will ring my breast surgeons secretary tomorrow and hopefully she will give me a call and let me know what's going on.
I don’t really have much personal experience of the MDT meeting but just know my case is discussed when needed with them. I haven’t ever been told beforehand that my particular case is going to be discussed other than when I was asking for a liver resection and that involved a lot of specialists. So I can’t say one way or the other what they might be discussing in your case but I do know how frustrating and anxiety-causing it is to know your scan results are available, being discussed, but you won’t know what is decided for a week or more. I really don’t think the medical team understand the pressure we are under almost all the time, let alone when we’ve had a scan!
I'm trying to keep positive and moving forward but everytime I stop for a moment the thought is there again and because I have pain it's a constant reminder.
I've had tonnes of scans in the past and I've never felt the stress to the same extent as I do with these ones. I've also only been taken to an MDT off the back of a scan once before and that was when they though I had liver mets so my mind is in over drive. If my results were all clear would they take me to an MDT? The BCN has said she will email the breast surgeon and her registrar who I have the initial video consultation with and see if either of them would be willing to speak with me or give me some clarification. I don't need the full detail, I can wait for that bit but if they could just let me know if or not they suspect my issues are bone mets or not then I think I'd have some kind of relief.
I was the same with my initial diagnosis. I had my breast biopsy on a friday morning but too late for the same day results. I had to wait until the tuesday. All weekend I was in a tiz waiting and then when I finally got my results and it was cancer I laughed with relief. Obviously cancer isnt funny so the doctor looked at me like I was simple but the weight lifted after finding out and not having to sit and wonder was immense. The laughing didnt last long but there was a comfort in knowing what I was dealing with and the fact that a plan was in place made a huge difference.
What's been your experience with MDT, would you say this was a good or bad sign?
Crazy Kate x
Dont apologise for expressing your fears on here, we all know what it’s like and I think we’d all agree we all hate the waiting for results of a scan. It always amazes me that the appointment I have, when I get my scan results, I get asked questions such as how are you? How are you feeling? When all I want to know is the bloomin results! THEN I can tell you how I’m feeling!
So feel free to rant on here and offload and anxiety, it gets to us all at times like this, and I really hope you get some answers before you think. Whether they are good or bad I’m like you, I need to know what I’m dealing with. Try to do something to take your mind off it , if that’s possible or maybe look up some relaxation techniques that might help you short term. Possibly speak again with your BCN and say how anxious you are and you don’t expect to wait this long for results.
I'm sorry if I offended anyone with my moaning about my fears. You are a lovely and helpful bunch of ladies and I'm very grateful for all your help.
I'm cracking up. This scanxiety has taken a massive hold on my life. I need to know the results, good or bad because I cope better with knowing what I'm dealing with than I do being stuck in this limbo.
I had my MRI last week and bone scan a few days ago. The lady doing my bone scan took additional images of my ribs which confused me as my complaint was my shoulder and neck. Afterward she told me my results would be with the breast surgeon by Thursday evening and that I should phone for the results by friday if she hadn't phoned me 1st. I eventually got through to a BCN. She told me I have to wait for an MDT which are held on Mondays however I'm not on the list for Monday coming and the next monday is bank holiday so it wont be until the 1st of september until I'm discussed. I'm not sure what to make of this situation, is it good, is it bad. I do know that I hate the wait.
Does waiting so long mean it's good news.... I'm about to fall apart because I dont deal well under stress.
Please tell me if I'm being insensitive on this thread xx
Hi Paris, I'm joining in a Zoom meeting today via another forum I'm on, and which is focusing on cancer and nutrition. I'm going to ask about foods/supplements that might help prevent neutropenia. The meeting isn't until 6pm, but I'll post anything I find out in here. xx
So got telephone appointment tomorrow with medical oncologist about potentional radiotherapy on knee. Even though will cause flsre up pain I hope I get some the osin rediclous im on 250mg twice daily pre gablin 35 twice daily slow release morphine paracetamol 4 z daily naproxin twice daily oral.morphine jf beedee and most recently lidocaine patches xxx
Yes being incurable and stage 4 is a lot to digest but a lot of us are doing so well on treatment. We have tough days but we are still living life to the full xx
even with stage 4 and being incurable we are still living a full and normal life, it’s not all doom and gloom! The treatments that are out nowadays can keep us stable and here for a long time!
Thanks for the replies.
I have a devil on one shoulder saying it's bad news and I should prepare myself and an Angel on the other telling me I'm being silly, over paranoid.
Youd think that almost 7 years down the line I would have learnt how to handle the stress of it all but it seems that's not the case.
I feel like I'm going insane!
I have bone and lung mets confirmed September 2019. Now I’m on treatment I have no pain at all either. The denosumab was such a great painkiller and really healed my bones. It’s so great that us secondary ladies have a space to chat and support one another. Totally agree with you Lollipop re the aches and pains xx
i have bone mets confirmed in jan this year. Pain doesn’t automatically mean bone mets it can be caused by lots of things. I have no pain from my mets in my spine at all and we’re only picked up by accident on a ct scan when I was diagnosed with breast cancer. I have lots of aches and pains but not where my mets are, different treatments cause aches and pains and a lot of what I’m on causes them. Good luck to you both x
Kate, I have no answers, as I’m a week or so behind you in the waiting game. Just wanted to say in your pocket and hoping you get some answers soon. It sounds like they’re being thorough, which is good but scary. I have my consultant appointment through for next Weds. keep telling myself 4 years of exmestane must mean it’s nothing to worry about (not sure I’m listening to my sensible voice though!). Xx
Hi Ladies, I'm sorry but I'm here for a rant again. Please help!
I'm worried sick. This pain I have in the middle of my back (around T4) is really confusing me because its a constant ache but when I lean on it it burns in the same way that a bruise would if you poked it. I've just got home from my bone scan. It's not my first rodeo so I knew what to expect, well I thought I did anyway. She explained that the scan would take 20 minutes or so and that she may want to do extra imaging afterwards. I thought, OK she will probably look closer at my spine or my shoulder because they are my complaints and I would have been fine with that but she really threw me when she came in and said she was doing extra images of my ribs on both sides. At this point I'm in panic mode wondering why my ribs, I dont have pain there and they've never done that on previous bone scans.
At the end of the scan I'm usually told that the consultant will contact me within a few weeks regarding the results but today she said that their radiographer would report within the next 24 hours and if I've not heard from my breast surgeon by Friday afternoon then I should phone her.
I'm hoping I'm just being paranoid but if any of you ladies can relate to anything like this then can you please tell me, good or bad. I am that person that needs all the options and information laid out in front of me to be able to process things.
Lots of love
Hi Paris, I used Manuka honey when my husband had Covid. I made hot drinks with Manuka honey, lemon juice and grated fresh ginger. We had them every day for about a month. I only had a few mild symptoms, loss of taste and smell, sinus pains and fatigue despite being on abemaciclib. He was quite ill but he came through it without having to go to hospital. I have no idea if the Manuka made any difference but I felt I was doing something positive. You do have to be careful you are getting genuine Manuka and the real thing is expensive but I think it is worth trying. I hope your bloods get back to normal soon xx
Hi DiJoy. I was diagnosed last August with mets to spine, pelvis, shoulder. I too am on palbociclib, letrozole and denosumab injections. I'm on 75mg of Palbo as both 125 and 100 mg gave me neutropenia. Unfortunately I have it again today. My blood count is 0.6 (usually 1.2) so unable to have injection and palbo this week. I'm not sure why it's gone so low..other than probably overdoing things the last couple of weeks. I would appreciate advice on how to boost my white blood cells. Feel totally wiped out today and been told to rest and not go to work and stay at home to prevent catching any infections/COVID. I was told Manuka honey is good for the immune system but not tried it yet. Has anyone else?
Aaah Windflower, I agree it's so necessary to be mindful about recurrence, but your post is really encouraging to read. My mets. are in my spine, but nowhere else, so I've been told that they're hoping to keep things at bay "for a good long time." It'll depend of course on what happens in my spine, but I'm hoping for a few more years yet!
Being diagnosed so long ago, I too am impressed about how much the range of available treatments has improved.
With all good wishes to you xx
Just to say that I was also originally diagnosed in 1995 and my secondary cancer showed itself in 2015, twenty years later, in my peritoneum and bones. I had FEC chemo and then Anastrozole and Denosumab for nearly five years. (On going). The FEC seems to have sorted the peritoneal Mets as they are no longer visible and the bone Mets have been "stable" ever since. I keep wondering when things will change. Since April my husband has been giving me my Denosumab at home- firstly given to me at the hospital to bring home, then delivered by courier after a telephone consultation and finally delivered to the local cottage hospital. for me to collect. So it just goes to show that anyone who has had breast cancer should be mindful that it can reappear many many years later and treatments are improving all the time.
Hi, I've been told that I have to have the first two Denosumab injections in clinic (just done the first), but then this can be delivered at my GP surgery. Might be worth asking about this within your Trust? xx
Hi Sondra and all. I'm new here, but was diagnosed with mets to spine in February. Quite a shock, as my original diagnosis was in 1995!!! Due to Covid, it took a while to get treatment started (May). Am currently on Palbociclib (100mg - 125mg made me neutrapenic), Letrozole and have just started Demosumab injections for bone strengthening. Is anyone on a similar regime, and if so, do you take any supplements of any sort that might help with immune suppression? Thanks xx
I am on palbo/letrozole and zoladex right now as my denosumab was stopped back in March "due to the pandemic". I only had five shots of it after diagnosis, and it hasn't been restarted. Has this happened to anyone else? They also changed it up whereby anyone just needing a Zoladex injection now goes to a special clinic that isn't on the chemo floor - which is FAR easier, faster, safer for the IV chemo ladies, but getting a hold of Adcal has been impossible (I would ask the chemo nurses for a fresh box), so I've just been ordering my own online.
Starting to feel rather cranky about the level of care - I haven't spoken to an MO since February (registrars only) and I get about five minutes on a phone call each month, although last month they called a day early to tell me my recent scans look great, they are thrilled with the response in the bones, but the breast tumor isn't really shifting (I'm de novo). That's cool and all, but it caught me off guard and I didn't have my prepared questions to hand and wasn't able to remember them all. Not six months after treatment started I was put on the every two month appointment schedule and while I know if I had a problem I could ask to come in, I guess I feel somewhat hung out to dry. I feel (and look) really good, but I have questions and concerns about small things that are cropping up that need to be actually seen in person.
A bit of a whinge more or less, and I prefer to not have cancer always been intruding on my life, but it would also be nice to not feel so pressured on the phone, talking to someone I've never met, who doesn't seem to ever read my info. We moved out of that trust area in early May and the first thing they asked was if I wanted to keep my care there and while I said yes until we got our housing a bit more firm (which we have now) maybe its time to switch trusts.
I have had bone mets for 5 and half years now ( few liver mets showed up 2 years ago too) I’m on my second line of treatment. Exemestane for 3 and half years and Faslodex with Verzinio the last 2 years. Also have Denosumab.
you have every reason to be hopeful with your diagnosis and who knows what treatment will become available to you in the next five years.
replying on threads seems to have changed a little since I was last here. Stoney I’m so sorry you’re struggling at the moment. Not sure a psychiatrist would be as helpful as a counsellor? Whilst they can’t change a situation, they can help you process and a safe place to share fears. Macmillan may have someone. I found it really helpful. Kate, I’m still under consultant and called BCN yesterday. She offered reassurance I’m the pain could be down to lots of things and thinks surgeon may want to see me first or refer for scan/x-ray. She told me to get back in touch if nothing heard in another week. Waiting really is the worst part - well that and being unable to garden. It’s been my sanctuary through two primary cancers. Deb have you heard anything? Keeping fingers crossed for all xx
Hi everyone, new to forum, i had breast cancer 2003, and accidentally found out last aug I had stage 4 in bones, pelvis, small bit on vertrabe.. .had hip replacement, radiotherapy and am now on hormone therapy and Bone strengtheners . .
I'm just wondering, does anyone else have the same and what time scale are you at. I've 2 young kids and it's heartbreaking to think I won't be here for them... Had scan last week and was told it's stable.
I was told 5-8/10 yrs...
I posted this as a new topic a month ago and got some replies, but I'm struggling at the moment...my GP has suggested I see a psychiatrist....not sure what that will achieve....
I've managed to worry myself even more now. I've had a feel up the top of my spine to try and figure out if my shoulder and arm pain is from my spine or the brachial plexus. I've got no discomfort in my spine at the neck which I found to be reassuring because then my pains seem more likely to be muscular or another less sinister reason. BUT as I walked my fingers lightly a little further down I felt pain. It's 1 spot on my spine between my shoulder blades. It felt tender or bruised. I've had a good few painless bruises popping up on my arms and legs so I had my 8 year old daughter to check if I had a bruise on my back and she said theres nothing there. I'm going to try not to touch it for a few days to see if it's still tender then but I'm worried.
I'm not quite sure what I'm moaning about or what question I want to ask. I guess I hoping for someone who can help in any way at all x
I contacted the breast care nurses and they organised me a video consultation with my breast surgeon. I waited about 10 days for the appointment so it wasnt too long that way. Are you still under the onc or a breast surgeon? After my consultation they decided to do me an MRI on my shoulder and neck and a full body bone scan too. I had the call on the thursday and got a letter on the saturday for my bone scan on the 19th. Still waiting for the MRI appointment though. Waiting is the hardest bit x
Hi Deb I wondered how you were doing and if you had an x-Ray date? I was diagnosed in 2016 and have just had a clear mammogram. I’ve been in a lot of pain in my right ribs (opposite side to affect breast) in the last few weeks, with GP and I both concerned. She’s written to my consultant to request urgent X-ray/scan but I’ve yet to hear anything. The pain comes and goes but worse sitting and naproxen is proving helpful. I’m assuming covid will impact on how quickly we are seen. I’d forgotten how hard the waiting game is. Thinking of you and hoping you are soon getting good news x
I have lots of pain in arms and legs and after having cancer I am paranoid it will return. Yes I have contacted dr where a blood test has been arranged and xrays.
I will have to wait for those appointments but at least I have started the process.
I have had many scares over the past 8 years and thankfully that’s all they have been.
Thanks for the reply Gillyflower.
I think in the past when I've kept symptoms to myself its turned out to be something of a worry and then those times I've shared my fears things turn out positive so maybe psychologically I'm hoping if I share then all will be fine.
I'm actually having the most discomfort in my collarbone that anywhere else at the moment. It's not pain, more a feeling of pressure. The pain side of things I can try and combat with painkillers but theres not way to combat this sensation.
As Nicky already said, don't apologise for asking a very reasonable question. I was in a high state of anxiety for months and months after my primary, I don't think the fears and worries are something that easily goes away just because you have finished treatment and been given the all clear, even if its years later. It sounds like you've had a lot of other things that caused worry over the years so its understandable that you want to continue being cautious.
You should definitely get your GP or breast surgeon to request a CT scan, as apparently X-rays do not show up evidence of metastases. You might need to push for a CT or MRI but it sounds like your team are very aware of your past cancer history and will be taking this into consideration. They might also offer you a bone scan to check your bone density for any degenerative disease like osteoporosis.
I've had two lots of serious bouts of pain in my journey with secondary cancer. One lot was from a collapsed vertebra in my spine (which had collapsed due to the mets) and was initially how the mets were found. The second time I had pain was due to two small compression fractures in my spine (which were due to osteoporosis and nothing to do with mets!) It goes to show that you can't predict these things.
I hope you are able to get an appointment for a scan soon with good results at the end to ease your worries - its hard but do your best not to presume anything until its all been checked out. We forget that our bodies age and start showing signs and symptoms of other common problems which can cause pain, like arthritis, osteoporosis etc. You are doing the right thing by getting it all checked out xxx