Val, glad to hear your hubby has the plaster cast off and that you are planning a holiday - you can’t have too many of them.
Dawn, pleased to hear you are starting to get some relief from your pain, let’s hope you can get rid of much more of it.
I have started on 25mg of steroids per day yesterday for at least 2 weeks as prescribed by the Dermatologist in an effort to see of this vasculitis that has been troubling me since January!!! I am just wondering when I will need to start shaving my beard and resembling a German shot putter!! I will keep you posted.
Hi, hope you don´t mind me butting in, need some advice, For the past 3 weeks ivé had pain in my rib cage, no bruising, same side as my operation which was last Dec… Dx grade 3 HR3 16 nodes infected,
I told my Oncologist yesterday, he examined me and found a small lump on my rib, I am awaiting a xray, he also said it could be fractured, surely I would know if I had done this… Or this the start of something sinister lurking!
How did you find out you have bone mets…
Sorry to ask but I wont get the results for another 21 days when I see my onc again…
Don’t mind you butting in at all :). I think it is good you have told your oncologist about your rib. So often people go to their GP and they don’t consider the bc history. With apologies to any GPs reading here - you obviously are better informed. Fractured ribs can happen if you have had a bad cough or impact from something. They don’t alway show up on xrays though. But at least your onc will be making sure it isn’t bone mets as well. If it is a fractured rib I read somewhere that it is important to cough or take the deepest breath you can at least once an hour, lol can’t remember why!
I actually didn’t know I had bone mets - I had been having investigations for a number of lymph node lumps all around my neck & collarbone. During one of the attempts to do a biopsy I was held for some time in an uncomfortable position and the next day I had really bad sciatica. When I told the onc, they had me in for xrays & bone scans and found it had already spread quite extensively - without me being in any pain. It is 8 years now since my bone mets was diagnosed and they have responded really well to bisphosphonates and because I am her2 positive - herceptin as well.
I do hope yours isn’t anything more siniser but do let us know how you get on. Sorry it is such a long wait till you see the onc again.
I didn’t get any pain either - just found my spine met at dx during standard bone scan. I’m quite shocked that you have to wait 21 days for the results of an x-ray - I wonder if there is any way of short circuiting the process?
Hi Thanks, I think I have to wait so long as I live in Spain, My oncologist travels from another hospital to come to ours only on the 21 day cycle, I don´t have a BC Nurse, just him, Also the language barrier, at least he speaks fluent English
OK, well that makes more sense. Glad you’ve managed to find an onc with fluent English, at least that’s one less thing to worry about. I think it’s possible your x-ray results will be inconclusive, in which case you might want to push to have a scan to be on the safe side (bone or MRI).
Hi all
Thanks for your welcome and questions. There is so much to tell that it is hard to start. I am on oxycontin foe pain, along with gabapentin, diclofenac, oxynorm for breakthrough and I use a tens machine and am get ng acupuncture from physio. My main problem is fatigue and drowsiness, enough to make driving a danger!
As a result, my gp has reduced my doses and it is helping, except now pain breaking through!!
I didn’t think you could have radiotherapy to same place either, but my onc thought I needed it again. I have been quite down recently and tearful, but I have had a better day today which is really good. It is wonderful to have contact with others in similar situations, although under terrible circumstances. Who is the famous brother then??!!
Helen
My daughter has breast cancer and is currently having chemo but she was called to see her consultant on 1st October and told she has secondary cancer in her bones - hip, spine, pelvis she was then told her life span = 1-5 years. Can anyone tell me if they are experiencing similiar and is this called mets that you are talking about. my daughter is too scared to talk about it so I need to help her come to terms with what is happening to her body. I am so sad for you all but you seem to bring comfort to each other.
Welcome to the Breast Cancer Care discussion forums, I’m sure your fellow forum users will be along shortly to give you some much needed support.
In the meantime I have posted for you below links to some of our publications that you and your daughter may find helpful. Please do also use the helpline here if there’s anything you need to talk to someone about. Calls to the helpline are free 0808 800 6000 open M-F 9-5 and Sat 9-2. Could I also suggest that if your daughter hasn’t already joined the forums here it might be a good idea for her to join as she’ll get some good support here from people going through the same thing as herself, and also give her access to other areas of support BCC offer. Here’s the links to some of the publications:
Hi Sarlou
What a lovely Mum you are to find out as much as possible to help your daughter and I’m so sorry she has been given a mets (yes, that is the right ‘expression’) diagnosis. Sometimes secondary BC is there right from the beginning when a primary is diagnosed and there are several women on here that have had that happen. I’m not sure from what you’ve said whether this is this case with your daughter or if the secondaries have been found during the course of chemo? However there are many treatments available and this will depend on the type of BC your daughter has either hormone receptive, herceptin receptive or triple negative and she will know this from her primary diagnosis. Chemotherapy can be the same to treat both primary and secondary but if one type isn’t showing to work she may be switched to another. After chemo she may well be on hormone therapy eg Tamoxifen or possible Herceptin and almost certainly she will be given bisphosphonates which strengthen the bones (this may start during chemo or asap). I have bone mets which were diagnosed a couple of years ago and, since finishing chemo, I have pretty much got on with life as before. And whilst secondary BC is incurable it is not untreatable. It does depend on the type of BC that your daughter has but it is difficult to say what her lifespan will be, ladies on here with bone mets were diagnosed 7+ years ago - something that I pin my hopes on!
I wish you both well, it must be a terrible shock to you and your family - I know my Mum and Dad were very upset when I had to tell them the bad news. Please come back if you need any answers and hopefully some other ladies will also be along soon to help you. If you need specific questions answered it may be worth starting a new thread as sometimes they get a bit lost in a generic one like this.
Nicky
I’m so sorry you and your daughter are having such a dreadful time. Yes, I’m afraid if the cancer has spread to her bones it is what we call mets (distant metastases). But please be assured there are people here who have bone mets that have been around a lot longer than 5 years. Of course everyone is different and breast cancer comes in many forms and without knowing any details of your daughter’s cancer it is hard to comment, but when I was diagnosed a year ago I was told my bone mets weren’t curable but were very treatable, and my oncologist expected me to be around for many years yet. At the moment I am leading a perfectly normal life, after 9 months of treatment. There are very good drugs (bisphosphates) that are relatively new and are very good at stabilising bone mets, with few side effects. These can be given alongside chemo, so I would expect your daughter to be given these asap.
You are all no doubt in a state of deep shock, and it is very scary reading up about a secondary diagnosis. But secondaries in the bones are in many ways more manageable than elsewhere - they can develop slowly, and be successfully managed with radiation and drugs. And some secondaries will just stay in the bones, and not move to the organs. And of course, the rather scary survival statistics don’t include the newer drugs that are proving so useful.
I’m sorry that your daughter’s oncologist gave such a pessimistic prognosis. I think in her position I might consider asking for a second opinion, if nothing else to make sure that my doctor is going to give everything a go. Maybe a referral to the Marsden? It is extraordinarily difficult at this early stage, but I would encourage your daughter to try and be as involved as possible in the discussions of her treatment. For myself, after the initial shock I found the more I knew and the more in control I felt, the more confident I became - and it enabled me to be more positive in facing things. I’ve gone on to embrace many lifestyle changes that I hope will improve my chances.
I am fairly new to bone mets, but there are many more experienced ladies here who I am sure will be along shortly to offer advice.
Hi Sarlou - I won’t repeat what nicky and finty have already said. It is sad that doctors give information of the sort your daughter has been given. I have had breast cancer now for 20 years and was diagnosed with bone mets in 2002. At that time it had already got a hold and spread to my skull, ribs, collarbone, all of spine, hips & pelvis. I had no warning really - no pain initially. I was put on bisphosphonates (pamidronate first, then switched to zometa) which has been very effective. Sometimes if the pain is quite bad they can give 2-5 sessions of radiotherapy to the painful areas. I think some years back to be diagnosed with bone secondaries was seen as a death sentence but nowadays there are drugs that are so effective and enable us to lead pretty normal lives. I hope you find it helps to come here and share with us.
Hi ladies
I’m New to this but here is my story. I’m 58 years old diagnosed with primary BC 6 1/2 years ago. Been extremely well (hiking, horse riding with a full time job) until earlier this year when started to get the some aches and pains i thought associated with age… imagine to my horror after having a scan I was told I was terminally ill with Bone and liver mets. Bone mets is in the femoral head, ribs, sternum and pelvis. Currently had 2nd out of 6 AC chemo and Zolandronic acid. Tolerating it quite well part from acid reflux and that ‘plastic/metalic smell’ which seems to follow you around everywhere.I don’t know anyone in my situation and most websites have frightened the hell out of me. I just don’t know what to expect for the future and whether or not to make any plans (like a holiday…and what about insurance)or how I should be feeling. To say i’m frightened is an understatement…my husband won’t talk about it and I don’t have any other family. I do however, have a great network of supportive friends, but none has experience of this…so although they are sympathetic they don’t really understand… I’d really like someone out there to share experiences with…
Welcome to the forum/this thread, but sorry you are here.
Sarlou, I agree what has been said already, it’s really inappropriate to talk about life span at this stage. No wander she is scared! It’s only a few days since you’ve got the news, it will take some time for the news to sink in and all of you to come to terms with the situation and diagnosis… we all went through the some process. My bone secondaries (mets) was suspected initially with primary, but was later confirmed during my chemo and zometa was add in due time and it has been doing a pretty good job in controlling it.
Jane, good to know you have a network of supportive friends, it’s important that they support you and help you out when you need those. I have both bone and liver mets, too. So, anything you’d like to ask, just do.
I had two 2 kinds of chemo, Tamoxifen in between, which failed. Now on Zoladex and Arimidex (hormonal treatment). I was very very frightened when I was first diagnosed (still is, just not as much). The latest PET scan showed that no active cancer in neither bone nor liver, which was an amazing result. In June last year, when I was first diagnosed, I’d never ever imagined myself in the position today to feel so well and planning to go back to work! Starting 5-weeks radiotherapy a week on Mon, hopefully that’ll kill off all those stray cancer cells in my lymph node.
Jane, I hope your AC chemo and Zolandronic acid work for you and you continue to tolerate the side effects. And sarlou, I hope your daughter’s treatment will be effective and both of you will get over the initial shock. I also hope that your daughter will prove her consultant wrong. Yes, getting a 2nd opinion sounds like a good ideal.
Thank you for replying I feel that we are not alone anymore but so sorry and sad for you all. I am trying to get my daughter to come on line to meet you. You are a very courageous lady and we wish you well. Sara has secondary spots on her spine pelvis and hip but also both breasts have various lumps with other in her lymph nodes nuder arm and collar bone. apparently the cancer has benn there for a long time but due to her breast feeding up until July the lumps were hidden - she saw 5 different Drs with the pain with no success until a lady doctor gave her a thorough exanination and sent her for scans - the cancer was so well hidden and still is. We have a lovely book called mummys lump toread to my grandchildren.
Sarlou, I just want to reiterate everything all the other ladies have said. I’m stunned that they gave your daughter a poor prognosis like that, but without knowing all the details, it’s not possible to make any comment really. I wish you both well and please feel free to come on here anytime. My friend m1yu who has written to you already has had a really hard time. She is a very young woman and has been incredibly brave coping with all of this. However, she is now doing marvellously well and we’re all thrilled and delighted for her. So I guess what I’m trying to say is please don’t give up hope and think that it’s all over, because there are loads of different treatments available nowadays. I wish you and your daughter the very very best of luck.
Jane, I’m 62 years old and was dx’d nearly 19 years ago with bc. Had a mastectomy, chemo, rads and Tamoxifen. It came back this January in my liver and when I went for all the scans etc. I was told it is also in my spine. I had absolutely no idea about the spine as I had no symptoms whatsoever. I did know there was a problem with my liver because of the pain. I’ve since had chemo (Taxotere) which didn’t help particularly, but I’m now on Arimidex tablets for the liver and Bondronat tablets for the bones. These seem to be working very well as my tumour markers have dropped dramatically and I feel well apart from the aching muscles etc., which are a side effect of the Arimidex. I know that the websites are very scary and I put off going on any of them for a long time. I also didn’t know what to do about making plans. I wouldn’t even order anything from an Avon lady just in case I died!! That will wear off honestly. I went to Rhodes in June and I came back two weeks ago from a fortnights cruise round the med. I got my insurance from Mia Online (although you have to phone them!!!) I researched a lot of Companies and I have all their contact details if you want them.
I can honestly say that I’m not frightened at all now, I just assume I’m going to live for years and I absolutely refuse to let it get me down - this disease takes so much away from us, it’s certainly not going to take my sense of humour, my optimism and the rest of my life away. If I don’t live for years, well, it’s because my number’s up and I won’t be doing anything that everyone in the world won’t be doing at some point. I have an unshakeable belief in the afterlife which is not a new thing, it’s something I’ve always had.
Well, I think I’ve probably rabbitted on for long enough, you’ll probably think I’m a nut case!!! Take good care of yourself and feel free to pm me if you wish.
Hope everyone else is well today and that you all had a great weekend. Lotsa love, Dianne x x x x
I’m so sorry that you find yourselves in this situation. I was diagnosed with liver and bone mets in January this year. To say that it came as a shock would be the understatement of the year. When I pressed my oncologist, she did give me a prognosis - albeit reluctantly - but no-one really knows for definite what will happen. The early stages of diagnosis are terribly frightening - it’s all-consuming - but gradually one adapts to the new ‘normal’. This may take some time but the mind and body are powerful and it’s amazing how one can eventually process the bad news and then get on to the more positive outlook of’living with cancer’. I have good days and bad days, but mostly good. I’ve been on loads of little holidays this year and try to fill my time doing interesting things and visiting new places. There are all sorts of treatment for our various conditions and, as we are all unique, some things work, some things don’t but there is usually an alternative. I did feel really quite poorly at the beginning of my diagnosis but now, apart from a bit of fatigue now and then, I feel well and strong. I’ve found these forums invaluable - I don’t always post but I love to follow people’s stories and there is always someone who will answer a specific question for you from their own experience and perspective. October 13th is Secondary Breast Cancer Day, so there will probably be more information around than usual. By this I mean that there will be inspiring stories from people who are living and embracing life with this condition. It’s a long and often rocky road but when I compare myself now to how I was in the first few months of the news, it is incredible how far I’ve come. I do have counselling at my hospital with a psychologist who specialises in cancer patients. This is ‘my’ time and I use the sessions to express my fears and concerns. It can be a bit draining at times but it frees up the rest of my time to be me. Although it is a part of me, my cancer doesn’t define me. Please take care of yourselves and don’t hesitate to PM me or read or post on any of the forums that have relevance to you.
Alison - I don’t have counselling (yet) but other than that I could have written the post above - I agree with every word. I’m just a year post dx and can’t believe how much easier it has got over the last few months. We never know what is round the corner, but living well with cancer is possible.
I would like to say a big thankyou to Finty for all her support. I am feeling ok, bit of a rollercoaster! Just had FEC 2 and am glad to be home. I hope that in a few days time I can be up and at 'em and don’t get too tired. Will just have to go with the flow.
x sarah
Hello Sarlou, Jane and Helen and everyone else on this page.
I remember the fear when I was first diagnosed with BC in 1989, 21 years ago. I worked for 10 years but in 1999 I was devastated to learn that the cancer had spread to my bones. Not only in my ribs but my spine, thorax and pelvis too. I was very ill by this time and the shock of it all really pulled me down and I looked awful. I did ask about my prognosis and eventually was told I probably had a 50% chance of surviving 2 years. However 21 years on ( or 11 since bone mets found) I am feeling better than I did in 1999. I do have to take lots of medicines including morphine for the pain but I have managed to get on with my life quite well. I do have days when I am not so good I will admit. But I never thought I would still be here and new drugs are helping to make my life better. Yes I do have to listen to my body and rest when I need to do so. If I can help in any way please just ask. It has been difficult at times but I am still here enjoying life. Feel free to send me a private message or ask if you have any questions or worries. Love to you all, Val