hi everyone,wondered if anyone has similar experience to me.i had bc inaug 2010,had lumpectomy chemo and rads and last year had double mx,because i had brca 1 gene,now on tamoxifen,have been fine since even got to the stage of living normal life,only thinking of bc when my hospital appointments are coming up.But in the last 5 or 6 wks i have had a pain in my left hip,mostly when sitting or lying on my left hand side and also have quite severe neck pain which is constant .i also feel nauseous quite regularly but havent actually been sick and i havent lost any weight either.I am worrying there may be a spread to my bones.(im 51)would appreciate your thoughts.
love di.x
Hello Di,
If I were you, I would contact my oncologist and asked to be checked out just in case. There are lots of reasons for pain in the hip and neck, one of which unfortunately is metastatic spread of your breast cancer, but you really need a professional consultation to see what is causing the pain for you.
I have spread in my bones, and suffered with pain in my hip for quite some time before it was correctly diagnosed - I’m not meaning that yours will be the same, but with hindsight I wish I had spoken to my oncologist earlier rather than seeing my GP and practice nurse, neither of whom identified the true cause.
Best wishes, and hope it turns out to be something easily resolved,
Julie x
thanx julie,
sorry about your diagnosis,dont really know much about bone cancer,hope the treatment isnt too bad???will make an appointment to get checked out asap,good luck for the future,
Di.x
Hi dib,
You should phone BCN today, they will be able to arrange an appointment with onc very speedily, I phoned on a Fri and was seen on Mon morning, fingers crossed everything will be ok. I do not have secondaries but
I have really bad joint pain in both hips, ankles and toes, I’m convinced it’s the tamoxifen. I also was nauseous for around 3 months and it was the tamoxifen as soon as I started taking it on a full tummy the nausea stopped.
Hopefully you will be the same, please phone as soon as possible, take care xx
Hi all
My wife who is 38 was diagnosed with BC last May 2011 and her CT/MRI scan afterwards showed no spread. She had chemo and luckily the lump reduced from 6cm to 1.5cm. In November of that year she had a lumpectomy and full nodes clearance. A sample was taken to see if there was any cancer cells and that was clear. This year she had radiotherapy and we thought everything was looking positive how wrong we were. Six weeks ago she started getting pain in her lower back and the left knee which wouldnt go away. A bone scan revealed hot spots in her back and knee and later a MRI scan revealed she has bone mets in the spine in two different areas. The knee is showing arthritis and now we have an appointment for a CT scan to see if the cancer has not gone to the organs. Can anyone tell me when you have bone mets do the organs get affected by the cancer quickly after. When you have bone mets can you live for years and manage it with the help of treatment. I have joined this website to get some understanding about BC and bone mets from eveyone here. My wife has been very upset and couldnt face doing anything so i have tried to do research on the bone mets to get a better understanding. It has been very tough and very upsetting for us but im trying to be very strong for her. Any advice would be grateful
Hi brum319
Welcome to the Breast Cancer Care discussion forums, sorry to read of your wifes diagnosis. I’m sure some of the other users will be along soon to offer you their experience and support.
In the mean you might find it helpful to read a couple of BCC fact sheets on secondary BC. We have one on secondaries in the bones,
which describes what it is, what the symptoms are and what treatments may be used. There is also a booklet on secondary BC which aims to help you understand what the physical and emotional impact can be and talks about living with the disease and coming to terms with the future.
If you would like to order these or read them on line just follow the links below:-
www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-breast-cancer-bone-bcc30
www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-breast-cancer-bcc58
I hope this is helfpul.
Kind regards Sam, BCC Facilitator
Hi Di, as the others have said I would get any persistent aches checked out. Us bone mets ladies, or any mets ladies, tend to use the 2 week rule, if it lasts longer than 2 weeks, get it checked. Obviously there are all sorts of things that can cause aches such as hormone treatments but it would be best for peace of mind or to find out what needs to be done. Good Luck.
Hi Brum319
It is a terrible shock when you get a secondary diagnosis, for your wife and all the family, we do all know what you are going through as anyone posting who has got mets has been through the same thing. It is quite scary to look at a lot of websites as some give a very bleak picture, based on outdated statistics. This website, and particularly the forum, was a life saver for me when I was dx with bone mets 4 years ago. I was able to ask questions on here and also read the factual, and not so scary information that BCC provide. As to spread of bone mets to organs it is very difficult to say and it’s a question that your oncologist should be able to help with, but even they might not have a clear view as all BC reacts differently. Sme ladies on here have bone mets and organ involvement, others, like myself, have not had spread to other organs, although that can happen as time goes on. There are various treatments available depending on the status of your wife’s BC, eg hormone, herceptin, chemo. There are some good threads on here that cover bone mets (bone mets, please join in) as well as others that are bone mets and other mets. There is a lot of information about our experiences on there which can help give a view on how each case is individual but also what treatments everyone is on. Hope all of this helps and you are doing a great job coming on here and supporting your wife when you are both probably still in shock. Good luck with the CT scan.
Nicky
thanx to you all,
brum your wife is lucky she has your full support,that is invaluable,we all need someone to support us.i hope everything works out well for you.
and nicky its reassuring to know you are doing ok after 4 years,if my diagnosis doesnt turn out as i hope then at least things wont look so bleak.im at this moment waiting for my bc nurse to call me back but i have an appointment tomorrow anyway with my surgeon to discuss dates for removing these hideous expanders!its like having 2 cricket balls strapped to my chest.best wishes to you all,this site is a lifesaver,bless you
di
going to have xray tomorrow so fingers crossed…
Hi all
Thank you Nicky and Dib for your advice and support. To be honest im still in shock about finding out my wife has bone mets in the spine. She has recently been having pain in her stomach/pelvis area comes and goes just started this week. Im very worried that the cancer might have gone to this area and i cant stop thinking about it. In the bone scan the hot spots were in the knee and spine so im thinking it cant have gone to the pelvis because there were no hot spots there. CT scan next Wednesday to see if theres any spread in the organs which is very worrying. Ladies im being very strong for my wife and putting a different face on when im around her but when im away from her im really broken about it and im trying to come to terms with it. Each day is hard for her and me and i tell her we will fight this and do our plans that we decided to do. All last year she suffered with her treatments but the out look was good then this year she is diagnosed with mets. I dont want to lose her she has suffered so much in her life and we wanted to adopt a child as we couldnt have children naturally. What a life its so cruel but i will be strong for her and keep on researching for new drugs that have come out for breast cancer. I recently read an article about a trial regarding bladder cancer and how using combination of chemoradiotherapy together was successful for some patients. One woman in Birmingham has been cancer free when she took up this trial. I will ask my wife’s oncologist if this can work with BC patients. Speak to you soon ladies and once again thank you for your advice.
Brum
just an update;;no xray going for mri scan instead but because my nodes were clear the doc said it was unlikely to be cancer,will just have to wait for appointment.wondered if anyone has had a spread after nodes were clear???
brum,stay strong,bless you.x
brum,good luck for wednesday,thinking of you both,stay strong.
di.
Hi dib
Thank you for your support and i pray to god my wife gets some good news on Wednesday regarding the CT scan. We have a follow up with the oncologist the week after on Tuesday. I hope the cancer has not gone to the organs im really worried. Anyway how are you and when do you get your MRI scan. I hope everything goes well for you we all need some peace of mind. Sometimes the doctors dont understand how patients suffer regarding pain in their bodies and dont request urgent scans. Recently i had to constantly ring the hospital for an early scan appointments and speak to various people to get things moving quickly. If i left it to the doctors i would be waiting for weeks or even months for these very important scans. I have been told by my brother-inlaw recently lemon juice and gogi berries are good for preventing cancer and fighting it he did some research on it. Im really trying hard to cope with this and it has affected me alot. My wife tries to be brave about it but its hard for her to keep getting bad news. Dib you take care and hope to speak to you soon.
hi there,
got my mri scan appointment through for this saturday,when i rang to confirm i told them i have expanders in still and now an mri scan is deemed not suitable.as it was my surgeon who referred me for an mri after just examining my expanders surely she should have known this.It doesnt fill you with confidence does it,my life in their hands,god help me!!I now have to wait for an appointment for a cat scan,just waited all that time needlessly.I wonder if they have any idea of the torment we all go through whilst waiting for the tests and the results,i dont think they do.good luck mrs brum for tomorrow,fingers crossed for you.
Di.
xx
Hi Dib
I agree the doctors can push to get scans and other appointments done quickly. I had to ring and ring the MRI departments to get early dates for my wife’s scan appointment and also treatment appointments. These doctors have the authority to get things moving quickly and they dont bother. You are right your life is in their hands and they dont understand how we feel the patients and their families. I will do everything in my power to get things done quickly as i want my wife to have some normality back. Hope things will be ok for you Dib and i pray everyone can have some peace of mind. I hope wife’s CT scan comes clear and she can have some positive news.
Take care
brum
just an update;
ct scan friday,results tuesday,fingers and everything else crossed,
Di.
fingers crossed for you too brum
Hi Dib
Good luck with your scan on Friday and as for my wife we had our CT scan on Wednesday. Hope everything will be ok i really hope so.
Brum x
I hope everything goes ok for you. It could just be your bone density Mine got shot to death with the Chemo. Ive been diagnosed with Oestephina and I get lots of aches from Arimidex. So dont be to worried.
thanx soi,
i know tamoxifen can cause joint pain so im hoping its that but the neck pain is constant and has been for about 4 or 5 wks now,but trying to stay positive,havent heard of oestephina.
Di
Hi ladies & gents
I’m so worried, i cant really believe I’m back posting here.
I finshed all my treatment for grade 3 invasive TNBC end of Feb. I was diagnosed at 30 and am now 31. I had lumpectomy, chemo, node clearance (1 was affected with some lymphvascular invasion) and rads . also have the brca1 genetic mutation. am recovering so well - have literaly bounced back . am working full time, lots of excerices , social life, family, all is well. But I have weired (but mild) pains in my hip and back and I fainted twice last friday , i went to A & E and they gave me head scans and ecgs ect because of recent history and becasue I also lost control of my bladder when I fainted. Everything came back clear but I let my breast care nurse know and mentioned the pains to her and she said to be safe she and my surgeon want making an apppintment with the onc team. I also have to go back for another baseline ovarian scan becuase the last once was inconclusive for various reasons and some fluid showed up - letter said thr fluid is very normal for a woman at the point in her cycle that I was at but I need a clear result from blood test to go with my new scan to rule out any problems - so its just the combo of stuff making me paranoid. But I do also realise the reality and possibility of what it could be. or maybe I just need more supportive running shoes !! lets hope so.
just wanted to splurge my worries on to the page to peeps who understand. i have read the recent post on this thread and am sending my best wishes to everyone and their partners. Cannoliwings