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
I'm not a mets lady but I too have come here for advice hoping that someone may have a similar experience or some good advice that can help knock my senses back into shape. I hope someone can help you.
If you dont mind me asking, why do you think you have bone mets, have you got aches and pains or is it just a feeling. I feel silly asking questions, I've had many scares over the 7 years but all turned out ok so I'm hoping this occasion is the same too. I sailed through all my treatments but a year later I had a non cancerous mass and 7 enlarged lymph nodes under my sternum and few years after that they thought I had liver mets as I had 2 masses but after further scanning they said the masses were cyst.
Have you contacted your gp?
I hope you can get some help soon
I was diagnosed with Breast cancer in July 2012. I had HER2 and ER2 positive. I had a full mastectomy with six months of chemotherapy drugs FEC/D and radiotherapy and herceptin. Sadly I was allergic to the docetoxil chemotherapy and Had to have emergency surgery because this drug perforated my bowel. I nearly lost my life and six life-saving operations followed. I nearly lost my life and six life-saving operations followed. I was left incontinent of the bowel and have to wear incontinents pads to this day. There are only a few of us that this drug has caused this to happen to and I accept all that happened to me to allow my to still be here 8 years later. At the moment I am worried I could have secondary Breast Cancer in the bone.
Thanks for the reply. I typed in all my aches and pains on Google, I know it's a bad idea doing that but the discomfort is at the forefront of my mind. It seems that all the pain I'm having could relate to the brachial plexus so I'm hoping its muscular rather than mets but once you've had bc you worry a lot with every ache and pain and I've now got an uncomfortable feeling under my collarbone kind of like it's being forced forward a bit and I noticed my right shoulder looks slightly lower than the other side.
Hopefully my breast surgeon can help put my mind to rest when I speak to her on thursday but I'm going to push for a scan. I'm terrified as I'm only 35 with 3 young girls to raise.
Dont apologise for posting a very reasonable question, and worry that you have on here. You’ve explained what’s happening which helps for any of us trying to offer support or a similar shared experience of pain. To be honest one pain, from mets, can vary in a lot of us depending where the mets are. I had no symptoms whatsoever when my bone mets were found in 2008 and when they’d spread further in 2013 it was just a very dull ache occasionally in my thigh. Others have spontaneous fractures and the mets are only found after the event. I’d say, given your history of BC that your oncologist should be taking your concerns seriously and get you to have a scan. These can show up other degenerative conditions (that you say you have) but might give a better picture, only a biopsy though could give a definite picture if there is doubt. I thought bone mets tended to develop in certain bones but I have heard of bone mets being found in the arm before anywhere else so it is a possibility.
When my bone mets had spread in 2013 I also had an XRay, which came back showing no changes or areas of significance, however a subsequent CT scan, which I insisted on having, did show up the widespread mets that had happened during a time when I wasn’t being routinely scanned so often. So I’d insist on getting any tests you need done even if it turns out not to be mets.
I feel a bit of a fraud being on here as I've not been diagnosed with any mets but I hoped for advice and you ladies seem to be well up on advice and experiences.
I was originally diagnosed Oct 2013 with stage 3, er+, pr+, her2 +++ and lymphnode involvement. I've had lots and lots of scans over the years as the hospital misdiagnosed me for 18 month so they're very on the ball but for the last 2-3 years I've only had scans related to diep reconstruction.
I've got a new symptom, or rather a combination of symptoms and I hoped that someone may have had a similar experience and good or bad give me honest options. Months ago I started with a pain intermittently in the middle of my forearm (ulna) and it felt deep in the bone. This pain has started to increase in frequency and painfulness but I also have developed an awful ache in the neck that radiates into the back of my head. I have full motion though and no pain on moving it. I often wake in the night with pins and needles up the back of my head and also the discomfort has spread to my shoulder.
My GP has sent me for an xray on my neck which looked "essentially normal" but she wants to see me on the 11th. I've got a video call with my breast surgeon on thursday to discuss with her. I'd like to think its muscular or degeneration as I have that at the lower of my spine but I am very worried that its mets. I dont wake with sweats but I do wake with wet or very greasy hair and I find the pain at its worst when I'm stationary as aposed to moving. Can anyone relate.
Thanks for taking time to read my post and I'm very sorry that I've invaded your post.
Hi KathNic, I had my right sided mastectomy in 2011 and that was my only surgery so far. I had annual mammogram covering only my good (left) breast until my second diagnosis in 2018. The mammogram in Mar 2018 showed something in my left breast and later CT scans picked up the same. A follow up ultrasound right after my 2018 mammogram confirmed that was only fatty tissue.
After 4 cycles of THP, my 1st onco left and I requested my 2nd onco for a surgery or radiation to the shrunk lesion on my sternum. My onco turned me down and said "for sure no surgery and only radiation but your last onco believed the chemo should clear it up"
After couple weeks, my 2nd onco discussed a CT scan result with me and said the 2 lesions in my liver were cancer as they shrunk (not disappeared) with chemo. I then requested a surgery, ablation or radiation to my liver. He turned me down and said no surgery. At most radiation but I had more than 3 places. I challenged all gone except the two. The first time he mentioned skin met. LOL the so said skin mets under my right side surgery area were so coincident the little bumps due to I felt so itchy in summer and scratched too hard. And, of course they disappeared in 1 or 2 weeks after the CT scan.
Anyway, he still offered me a mammogram which covered my left breast AS WELL AS my "no tissue right breast" but only 1 angle was taken which was from the side. As expected no skin met was found. A follow up ultrasound again showed the suspicious area was fatty tissue. Since then, no more mammogram.
For your case, I feel you your lump in the breast may have a complete response to the chemo and not sure if they will offer you any surgery to your breast as nothing to remove. Maybe you can check with your onco. The below link is for your reference.
ps. I had requested a biopsy when my current onco (the third one since my 2nd diagnosis) told me the lesions in my liver are benign She turned me down and said she can not poke me everywhere. A MRI can tell but that won't change my current treatment. I choose to believe as at least one of the lesion was there since my 1st diagnosis. My mom passed away 6 years ago due to SBC met to colon and blood vessel. She also had 1 (benign) polyp in her liver and was found since her 1st diagnosis in 2002.
Lovemama... thankyoy again ... can i ask also... have you had any surgery ... masectomy/etc??
Thanks for all you help/knowledge.
Hi KathNic, I was diagnosed SBC in Aug 2018. MY first scan was quite scary". Shadow in heart, 1.5 cm leison in lung, "a dot on x-ray, 1.5 cm desruptive tissue on both vertex" on sternum, 2 leisons on abdominal linings, 2 nodules in liver. The radiologist commented the ones on sternum and lung should be cancerous. However my tumor marker showed 27 (normal range <30, had been close to 0 after all my primary treatments). My 1st onco said the one on heart should not be cancerous as breast cancer cell can't grow in heart. One of the leisons on my liver were found at my 1st diagnosis 7 years ago and were confirmed non cancerous after MRI. She said my cancer was everywhere and she picked the one on sternum for biopsy and confirmed MBC triple positive. 4 cycles of taxol+H+P blasted off (made disappear) the leison(s) in heart, lung, abdominal linings, barely seen dot on sternum. Since then Tumor marker dropped to around 13-15. The latest bone scan in June last year showed the spot on sternum was healing and about one tenth in length was highlighted. The liver ones remain suspicious. On those CT scans afterwards, one radiologist interpreted them as cancerous, other radiologists not sure. My current onco said they are benign. She does not offer MRI but said will closely monitor. No change in treatment H+P unless increase in size and/or increase in number. My current onco once said my CT scan was "clear" 😀
Not sure if it had helped, I refer to below link for my diet during treatment.
Ive just found this thread and am hoping for some advice.
I was diagnosed straight to secondary in May 2020. I had a 27mm lump, extensive lymph nodes and mets to 2 places in spine. Im triple positive.
I'm mid way through my 6 cycles of herceptain, pertuzumab and docetaxel. I recently had an ultrasound to check progress. My lump had gone to 5mm.
I was just wondering if anyone else has had a similar diagnosis and how you are doing? Did you have surgery?
I'm REALLY struggling with the diagnosis and continue to have negative thoughts even though I have a counsellor. Im part of Facebook groups and have made some friends from this. I dont ever think I will get back to normal. Im praying that I get to NEAD/NED ... but know that this result doesn't last forever.
Hi Gillyflower and Daylightdancer. Many thanks for your responses. It is true that I shouldn't worry until I get the results, but it's hard, isn't it? Pain is definitely not from osteoporosis as had a DEXA scan as well the other week and my bones are strong - apparently nearly 0% chance of breaking a hip in 10 years. I did wonder wryly to myself whether I would still be alive in 10 years time! The bone biopsy was to take a sample of a lesion that is between my lungs which is not giving me any trouble - it is my leg and ribs that are the problem . I had to lie on the CT scanner whilst they moved the needle in, avoiding my heart and arteries and then re-scanning quite a few timesto see if they had the right place. It is quite marvellous what they can do, isn't it? Results in 7-10 days. The consultant did mention radiotherapy for pain relief, and I've heard it works, but does it make the pain worse initially, as I have heard it can do? I will definitely try your ideas of acupuncture and hypnotherapy. Best of luck to you both xxx
Sorry yhst you are sufffering with baxk pain i hsd baxk ache for two years before diagnossis. When in hospital of week of sdmissjon my sister who is aa consultant asked if the palative consultant could be involved and he sorted pain out bsck then this time last year was on 60mg twice a day slow release morphine 250mg pre gablin oral morphine if needed snd paracetamol. I was walking with a frame since then ive jsf radiotherapy on my lumber thorasic skull neck snd femur. Im now on 20mg i reduced not only . Radiotherapy but as i hsd crushed vertebrae they carried out kyro plasty. I walk with a stick now for distanced back then like said frame not very far now 5km day eith stick still need be cautious bending doen puttong things in draws making my bed can all trigger my baxk off. Hopefully if you get some wupoirt meds sorted will helo you xxxxx
I'm so sorry to hear about all your pain and possible mets, reaching out to send you hugs xx The waiting for results / outcome is always the hardest and worst part.
Don't presume anything until you get your results. I have extensive mets in my spine, ribs and pelvis and had incredible pain and back spasms a few months ago. I couldn't walk I was in so much pain. I was panicking thinking the cancer must be growing extensively!
It turned out I had osteoporosis as a result of all the cancer treatment...which had led to two small compression fractures in my spine. The mets were actually healing otherwise!
I was referred to a palliative care nurse who sorted out my pain relief for me. I was on low dose, slow release morphine twice a day combined with paracetamol and liquid morphine (Oramorph) for topping up. I've been told radiotherapy and cancer treatment do help with the pain from mets.
Alternative therapy is also something you could try - I've read that both acupuncture and hypnotherapy are proven to have good results for pain relief, particularly in cancer patients. I have had both. The hypnotherapy surprised me immensely and I had really good results, so I now advocate it at every opportunity. I paid privately for the acupuncture and had good results with it but I thinked the hypnotherapy worked better for me. The hypnotherapy was offered to me through my local hospice and so was free. There are also plenty of "do it yourself" guides on the internet and Youtube for hypnotherapy pain relief, as apparently "hypnobirthing" has become a pretty big thing in recent years.
Good luck with your results and next appointment xxx
Hello. I had breast cancer in 2011, Have been fine, but was rushed to hospital in great pain a month ago. After CT, bone scans and a colonoscopy they found a lot of hot spots in the ribs, (front and back), sternum (which apparently is in a mess), and right hip/leg. It's likely to be bone mets I guess. I have a bone biopsy tomorrow. I am on Fentanyl patches and paracetamol, but they don't work for long. The pain I am in overcomes my fear of the cancer returning. I was wondering if any ladies out there are on pain relief that works, and does the pain go away once treatment starts?
Hi there, I’ve just been reading through old posts & see you were/are on Eribulin. How’s it going?
Hey guys how are you in this horrible weather today? At least we are not tempted to go out:) Due to the current Covid 19 situation I decided to stop my chemo of Docetaxolafter the 6th cycle so I am on nothing at the moment util they decide what pills to give me. While I was on chemo I only lost part of my hair on the top of my head and around the ears thanks to the scalp cooling. I had my last cycle on 6.03 and now is 28.04 my hairs is still falling when I am combing it. When is it going to stop????
Just dropping in to say Hi. Been ages since I was on the forum sorry - just not enough time, I have been busy with work and fun stuff, even with the lockdown!
I was dx with secondaries March last year, was on Abembaciclib, letrozole and denosumab. Excellent response - complete remission after 6 months. 6 months later and I have recurrence in my pectoral muscle (I had a lump there last year - that was how they picked it up in my annual check-up). All three spots in my bones still looking good. Changed treatment yesterday to Fulvestrant but staying on the abemaciclib.
Trying not to feel to negative but its hard when you thought things were going well. I even started to dream I might make retirement one day. Now it is back to fretting about whether this treatment will even work. I know my NEAD status was always fragile and temporary, but this really brought it home.
And I can't even go visit my family or anything with this virus going on 😞
oh well I know I am still doing well all things considered there are a lot of people who have things much worse than me. Thinking of you all today.
Just throwing out a message to ask how you are, if you drop by here. I don’t come to the threads much any more. Won’t say why here. I suppose I should try sending you a PM and may try later. I’ve got out of the BCC habit! But I might give that a go this evening. We all have plenty of time on our hands now, so no excuses! But hoping you are ok. I’m still here!
Hello ladies , Yorkie1 - just reading your post - have you had tests to rule out other Metabolic bone disorders like hypophophatasia if your Consultant is confused by your results and lack of symptoms ? I don't want to give you false hope but sometimes it can be quite complex to ascertain that mets are what is being observed on scans may be worth asking - it's a simple blood test (ALP ) to rule it out .
I had a single met at L2 which caused a fracture so had to have surgery to pin it and shore up my spine. I am ER PR plus HER2 minus. I then had stereotactic radiotherapy to my spine (three sessions) and since October have been on Abemaciclib, Fulvestrant and Denosunab. Recovery from surgery has been the toughest part and after an initial hiccup on Ribociclib which made me sick a lot I was switched to Abemaciclib. The only problems I have with the meds is diarrhoea and upset stomachs and I have to be careful what I eat but apart from that I am fine. My recent scans were stable. It is surprising how quickly you get used to it all and can carry on more or less as normal. Initially there were loads of hospital appointments which was really exhausting but now I only go once a month. I struggled a lot at first and I used to sit on the sofa and cry a lot but gradually I started to feel better. Good luck with your treatment plan xx
To yorkie, hi I am at the worst bit this week , worried losing my mind basically. See oncologist Friday . Have a,lesion on pelvis I previously had secondary bc with lung mets all shrunk now and scan results excellent. Reading about your experience and others does take the edge off. How do we stop this terrible worrying , but deep down we must be much stronger than we think. Wishing you well , I am hopeless at doing posts on here so what I write is often incoherent.
Thanks to everyone for their replies and support. I find this forum a huge comfort.
I go to the hospital on Thursday ( all being well) to discuss my treatment plan. My Oncologist admitted he was a little confused as my bloods are all normal, tumour markers included and I have no symptoms whatsoever despite the extensive mets and significant bone damage.
In terms of my appt on Thursday, are there some specific questions I should be asking? I'm ER/PR positive but HER negative. My primary was removed by single mastectomy in Feb.
Thanks as always for your advice xx
I’ve also been told that I have “extensive but moderate” bone mets (whatever that means) which were only diagnosed 5 weeks ago.
Like you I was very very scared to start with but I’ve now begun treatment and have got my head around this “new” me. I can now talk about it without bursting into tears and I am able to laugh and feel happy. I figure it might not be the life I would have chosen but it’s the only one I’ve got. I have also found this forum to be a massive support - if only to realise you’re not alone.
I hope you can start treatment soon.
Daffodil 🌼 xxx
Sorry to.hear about your pain..I kept going back.to.the gp ..the pain was similar to bad arthritis in my case. So gp arranged the scan which is.where they saw the lesion.. Keep going to.gp...
I had breast cancer and a mastectomy of my right breast last year. It was HR poss 8/8. No apparent spread to lymph nodes, so no chemo etc.
I've had a really sore aching right leg for a few months, I mentioned it my consultant and he said he thought it was mechanical rather mets but if it persisted he'd send me for a bone scan.
I've since had a mamoplasty on my left breast last week and due to see consultant again next week.
I still have the pain, my leg feels weak and it's bad when I'm in bed at night as well, so not just when I put weight on it.
I know it might be hard to describe, but can you tell me what your leg pain was like and how you managed to get scanned?
Oh biker I’m so sorry, although if they think your heart is suffering then it was for the best. I had a dodgy ecg last week it was 456 which is only 6 over but it’s still worried me. I’m nearly at the end of my first cycle of treatment so I will have my 7 day break soon. There will be treatment options for you so please don’t think there won’t be xx
I originally had breast cancer her pos 3 with lung mets , to cut short I was on kadcyla and was working very well, unfortunately it affected my heart function so they stopped treatment . This was away back in August but scans always came back with no more growth. Had an aching leg the had a scan the they discovered the lesion. I keep saying was,that because I have been off treatment. A nightmare just trying to process all this. Thank you for listening feeling so out on a limb.
sorry to hear about your diagnoses it totally sucks, I’m only about 6 weeks post diagnoses and feeling pretty crap most days but the girls on here will keep you going and are all so supportive and have positive stories. What’s your diagnosis? Sending you a big hug xx
Just found out I have a lesion on my pelvis so to read some positivity helps regarding treatments. See oncologist this Friday so hope to feel better to hear there will treatments available. Totally lost the plot thinking the worst.
do mind me asking your diagnoses and treatment plan? I was only diagnosed with spine mets about 6 weeks ago and I’m still struggling xx
Hi Yorkie 1 I am sorry about your bad news but please remember there are lots of treatments for bone mets which can keep us going for a good number of years. It is a horrible shock but hang in there and we are here for you
im so sorry about your diagnoses it’s allot to get your head around. I’m still not dealing with it well either, I’ve been told it does get easier with time and I’m hoping this is true. What is your treatment plan? Sending you a huge hug xx
Just had the results of my PET scan and its shown extensive mets throughout my skeleton.
Feeling so scared