Hoping you are on the mend soon, can get to the hospice quickly and then go home from there. Great to hear you have got a decent mattress. Now all you need are a decent bunch of nurses...
sorry for you recently diagnosed but Im not a good example. to-day I have a new ripple maattress so hope the bed sore heals. The Mcmillan nurse has suggested that I may be able to go to the local hospice from here which would be a good idea for me and my family. Fingers crossed and that the legs improve.
I replied to your earlier questions in your 'own' thread but have seen you are on here as well, which is a good place to ask lots of other questions!
In my experience Tamoxifen failed as well (with primary) so hormone treatment was still discussed as the main treatment plan once bone mets were dx,as I am highly ER and PR positive, but this time using AI's, aromatase inhibitors, with me being given zoladex injections monthly to put me in the menopause. The other option was chemo followed by AI's. It took several weeks to come to the decision that was right for me and my onc wasn't in any particular rush to get started, which is a bit unnerving but also comforting as I guessed I wasn't going to pop my clogs any day soon. I decided to have chemo, having not had it for my primary, and having no node involvement I wanted to flush my blood system out. Once this was decided everything started pretty quickly. I think it will depend on your grading etc and the fact it has not come back immediately after primary treatment has ended as to how quickly you start treatment but you should have time to ask any questions you might have with your onc. I have never asked prognosis but that's just me but I did ask, or was told, other factors about my BC that had a bearing on my treatment. Hope all goes well on Thursday and come back with any questions before or after, I'm sure one of us can help.
Sorry to hear of yet another op and that you are far from comfortable where you are. Its certainly along time to wait for a wee because surely the nursing staff know, if you ask you really need a pan NOW!
Its having to ask as well, relying on people to help you that gets you down. Lucky for me I have not spent more than a week in hospital, by that time I was going mad and climbing the walls.
Take care of yourself, sweet dreams
Hi Rosie, thinking of you and willing you to be discharged soon. 25 minutes! Blooming Nora! Hello to all new ladies. I have to agree that this thread is full of very amazing people. I was diagnosed in december 2011 and have found reading posts really helpful. I truly learn something useful every time and feel stronger knowing I have you all to understand me. It's a total pig. I haven't walked since October and haven't driven my car as can't work the clutch safely. Good thing though is that I will soon be driving a brand new automatic car courtesy of motability. Love to all, keep strong and thanks for inspiring me especially Rosie,, val and scottishlass, not forgetting Dawn and Claire. You are generous sharing your experiences with us. By the way Cheesy, take all the questions you need answers to written down when you see oncologist. They don't always give you all info you want unless you ask because when you are in shock, you cant take it in. Some people dont want to know the details. I havent seen my mri pelvis because i dont think it would help me. Its so individual.I found the whole experience really awful at diagnosis but now I have my support network set up including here on this forum and I know what I need and want to know. Hope this helps xxxxx katy
well dwith one all of you who are doing well with diagnosis and hope you continue to do. Hope you aren't put off by my horrendoues experience. I had another op on Fri , to put a pin in my arm sy o a using only left hand for 2 weeks, Bsic nursing care is still lacking
and gets more frustra ting the longer Im here.
Some nurses are lovely but thenI had to wait 25 mins for a bed pan yesterday.
Having just started to look through all the previous posts on this thread....I'm up to page 30 at the moment and each post has eased some of my fears just a bit...and I will keep reading them only another 197 to go:) and you are all truly amazing let it be said and an absolute inspiration..just wanted to get that off my chest..feeling okay today...sad but okay. My question is with all the information available how much should I be taking to my Oncology appointment on Thursday and are bone mets treated as a less priority than original diagnoses in anyone's experience?? I can't help wondering.....
I was also diagnosed at the age of 44 in 2008,mastectomy, chemo, rads, herceptin, tamoxifen. I thought that it was all behind me until the summer when a pain in my rib made be worried. I have is bone met on my 6th rib and on the hip.
I was absolutely devastated. My kids are still young basically I thought I would dead by Christmas. This site has given me the strenght and the will to look up and be positive. Dawn, Val, Clare and many other are true inspirations.
It is the only place where women really understand what you are going through, there is no judging and lots of encouragements. Come and join us on this thread, we are here for you. Go to benchland as well is it is the most wonderful place.
I was dx with bone mets from day one.I have several mets in spine,and also in hip,pelvis and femur.I was originally put on arimadex but this did not work so switched to letrozole.Also took oral bisphosphonates and have now switched zometa,the iv form.
I was dx in may 2009 and at the last scans my bone mets were stable.
I had a lot of pain originally and had a blast of rads to the spine where the pain was worse.I do take painkillers but I have found recently the pain has improved and I have managed to reduced the dosage.
Many ladies on this thread have had bone mets for many years.Some of us have pain,others don't.Every one of us react to the mets differently but on the whole we all have a treatment plan which enables us to get on with life.
Once you have a treatment plan things do feel better,waiting and worrying is the worse.
Take care and hope everything is put into place soon
Thank you dawnhc for 'bumping' this for me. I was diagnosed last Thursday and have spent the last 9 days either crying or just in the most surreal place...words are just hard to find but 'gutted and totally lost' pretty much sums it up.
I've quickly looked at some of the past posts on this forum and you are all dealing with so much, I feel my one met in my 6th rib is hardly anything in comparison. I was originally diagnosed at 44 years of age in October 2009 with Grade 3, stage 1 non invasive ductal carcinoma, 0 node involvement ER+ PR+ HER2-. I had a lumpectomy which then further surgery for clear safety margins, 5 cycles of FEC, 28 rads, been on Tamoxifen since April 2010 and until just before Xmas when an annoying ache in my back made me think 'Uh oh' I had been pretty much well with very few side effects to complain about. I even went in for ovary removal in October 2011 (albeit they could only get the right one out and 3/4 of my left ovary out...there is another story) but I thought I had done as much as I could to prevent bc coming back....evidently the unpredictability of this horrible disease has well and truly slapped me down hard regardless sof what I do and for me, its my family I am so devastated for. A bone scan, CXR and CT scan confirmed one small area on my right rib...my CNS gave me he result and I am due to see the Oncologist this Thursday following bloods to see if I have gone throught the menopause so I can go onto Arimidex. If I haven't gone through menopause what happens??? She said the Tamoxifen has not 'done its job' so is there an alternative???
Any guidance/advice any of you ladies can offer will be very much appreciated. I've been a frequent reader of postings but although usually an optimistic psoitive person I find sharing quite hard...putting on a brave face in front of everyone this past few days has totally worn me out and I've been trying to keep the crying to myself and given myself one god awful headache..but now it sounds like I am whinging and thats not how I want to appear:(.
Info on treatment options etc would be very helpful so if theres anyone out there who has experienced anyhting similar I would be most grateful. Thanks you Leigh x
Thank you Val,
I will try and put it on a back burner. Hope to go riding on Sunday which I always enjoy. A friend at work has also a worry with her ovaries and womb, all enlarged, no bc, but I said to her if we are both ok we should go out and celebrate,she agreed. I said to her we may end up in the same ward at the same hospital at the same time!
Sorry I cannot help here Myfanwy/Claire. I had chemo way back when I was 39 which stopped my ovaries from working so just don't have the answer to your question. I hope someone else will know on here and get back to you.
That is the problem when they do not know all the facts so you will have to wait until they get all the results. I have had my hormone blocking tablet changed several times in the past 13 years but when I was 39 the tumour was not hormone receptive. However when they did more tests on the original tumour 10years later they had more up to date tests and that is when I went on the hormone treatment.
So I just don't know Myfanwy/Claire. Will look out to see if anyone else answers your questions. Hope you can put all this on the "back burner" and try to enjoy your weekend. Not easy I know. Love Val
Val, thank you so much for your support. Yes, I'm feeling better today as I was at work and it takes my mind off things. I have been chasing to find out about the date of my MRI but haven't had any luck yet. The onc's assistant said if it looked dodgy I'd have the operation within a month of the scan. I asked her what would happen if it is BC spread and she said they would just change my hormone(on Tamoxifen at present)treatment and carry on. Does that sound alright to you? My BC was very estrogen positive. Also, as my bone mets showed no signs of progression (bones trying to heal themselves apparently) is it possible for the BC to go beserk in my ovary and stay the same somewhere else? Its all a bit confusing.
Dear Myfanwy/Claire, So that you are still feeling low and hoping you are feeling a bit better today. When exactly do you have the MRI Scan and do you know roughly when your operation will be? This waiting game for tests and results is always hard.
Hi Racer, I am sorry you have this bone problem. I had an operation on my hip in Sept where they inserted a titanium pin inside my femur and 2 pins into my pelvis. It has taken quite some time fully appreciated the benefit of the op. I saw my Ortho Surgeon a week ago and he doesn't want to see my again unlesss i request a review. I told him about ongoing discomfort but he thinks it is coming from my spine. So My Oncologist agreed that I could re-start Lidocaine patches which I found to be realy helpful. Sorry I haven't any info on the fragments you talk about. Good luck with filling your bottle!
Welcome EllisB, gald you have been brave enough to post. There is a lot to get your head round. I have had bone mets for 13 years and am sti learning!
I am now off to the dentist, then to the hospital for my infusion and to pick u the chemo tablets to start a new round of chemo. Got my head round it and the fridge filled with nice things to eat and tickle my taste buds. Love to everyone on here. Love Val
Sam BCC posted a comment for me a few weeks ago, just after I'd been diagnosed. Thank you Thumbie and Jacqui for giving me some really good advice and helping me feel less alone. I've only just received my new username so it's only now that I can say thank you. I feel so sorry for all of you who are having such a bad time at the moment - this is such a dreadful disease - and I know that's an understatement!
I wanted to say a big thank you to all of you who have posted messages of encouragement to each other - because people like me who read them are encouraged, and given hope too. There is such a lot to get your head around isn't there - and just as you think you're beginning to adjust - something else comes along and knocks you for six - you were right Thumbie - it is a rough road - but I do feel better now I know a bit about the next few steps!
Sorry a fair few of us on this site are having a bit of a bad time at the moment.
I feeling a bit low this evening. As mentioned in my earlier posts I have an enlarged ovary. I saw my breast consultant last week who said it could be anything, then I saw one of my oncologist's team who said it was most probably bc spread bearing in mind my condition. On pressing her though she said she wasn't certain, it could be or not be. I'm having an MRI scan soon and removal of the ovary, whatever it is. Its just the waiting game again, gets me down sometimes.
Hi everyone, sending my love to you all especially the ladies who ae having a rough time at the moment. Hope things improve for you xxx
I saw my onc recently and told him that I am still having some pain in booth my hips and lower back. I recently had rt before Christmas on my right hip and said perhaps I have not given it enough time. The pain is worse at night-time and I get the shakes with it sometimes. The Onc said I should feel some improvement and too soon to consider more rt however, my hips are in a bad state fom the bc and referrred me for a urine test to see if fragments of bone are being passed in my urine as my bloods are ok. Has anyone had a similar experience?
The urine test was a challenge as my onc had told me I would have an ordinary sample bottle I started to laugh as it was 5 litre bottle which I had to store all urine over a 24 hour period. I thought that I would never fill that! Sometimes I wish i was a man lol xx
Hi chrisp1e and welcome to the BCC forums
I am sorry to read that you have this worry and in addition to the support you have here please feel free to call our helpline where you can talk to someone in confidence about your concerns. The lines are open 9-5 weekdays and 9-2 Sat on 0808 800 6000
I am posting a link to further information and support services BCC can offer you:
Hello chrisp1e, welcome to the site. I am sorry that you have had this recent worry to deal with. We are all here to support one another and to pass on things we have picked up on the way. I too am on Letrozole and Zometa but I do have a lot of pain meds to help me cope with the bone pain. We are all different yet we understand just what you are going through. Usually someone will come along with an answer to our questions and if not we can usually suggest who to contact. Keep posting and let us know how you get on with your CT Scan. (I am having another CT Scan on the 27th of this month). Val
Hi I've just joined the site. I was originally diagnosed with bc in 2000 and had chemo and radiotherapy. I was diagnosed with bone mets and spread to my neck glands in 2009 and have been on Letrozole and Zometa since then. The bone mets have improved somewhat since then and I've never experienced any pain. However a new lump has appeared in my neck and I'm waiting for for a CT scan for restating and then a biopsy. Decision still to be made about future treatment. Bit worrying.
I agree you have to ask for what you need and bc nurses good place to start. Nothing happened for me until i had a melt down in clinic. Now i have mac nurse bc nurse dn and see the consultant i really have good relationship with. Good luck with demanding what you need because we all deserve the best. Ive been a nurse for a long time and its sad to hear of rosies experiences. Nurses should be highly skilled and have emotional intelligence. They should also know how to wash a patient and care for them as they would their own family members. Rant over!! Xxx to everyone
Hi Nicknack, Your Mum should be able to see another Oncologist if she is not happy with the present one. She can phone the BC Nurses and ask them about changing doctors and also if Mum can have a BCN with her. My BCNurses are lovely and I often contact them to discuss any worries I have. They are most supportive. Perhaps a chat with them yourself would be possible. You can phone them any time and leave a message for them to phone. My nurses usually phone me back the same day or the following one.
You said you were worried that your Mum is giving up. I Have had moments when I have felt like this so know what that feels like. But there are so many new treatments out there. I had BC first when I was 39 and am over 60 now but I do have bone mets which I have been receiving treatment for over 13 years.
Does your Mum have any support at all from professional nurses/or doctors. Is there a Maggie Centre in your area? They are helpful in all sorts of ways not just to patients but to their family too. Tell Mum about the BCC team on here nad perhaps she will make contact when she is ready to do so. Val
Mum had a call from her very unpleaseant Onc Secretary, want to see her today, Needless to say, she is really anxious, about why. I hope they have a Supporting Nurse, with her, when she was under the breast clinic, a breast care nurse always went in to her appointments, as a support but since she has been transfered to this Onc she has not heard a peep from any supporting nurses.
Can anyone tell me should she be getting support from Nurses? It seems to have stopped since she was transfered to this Onc.
I am worried, cos Mum has told me she does not want any more tests or treatment "what will be will be" she said, I hate to think she is giving up, I just hope she will get her fighting spirit back, she is usually a strong wonam and when I see so many on here with so much fight and determination, I have so much admiration to all of you and you are all a true inspiration!!
Hi Rosie, I am sorry that you are not getting the care you so need right now. It is awful. I went to visit my Mum who is in a nursing home on Monday. I had to trim the hairs on her chin and cut her broken finger nails. I asked her if her toenails had been done. She couldn't remember but when I took off her slipper her toenails were growing into her skin at the top part of her nails and she had a fungal infection in the large toenails of each foot. It looked as if her toenails had not been cut for 3 months. It was awful. I got the staff nurse to have a look and she was horrified and was taking it further. She knew I was unset and angry about it. I said to her that it was basic nursing care and she agreed that the nurses who bath her should have attended to it. I am waiting to hear if there is anytime more to be said about it. But how many other old ladies on the ward have no one to complain for them. It is just not on. I think the nurses now get a nursing degree but I do not think that compassion or care and understanding is something they are even aware of.
I hope they are able to do your operation successfully and just to say I am sending you love across the cyberwaves.
I phoned my BCN yesterday and she called back this morning. She discussed my care regarding starting/not starting my chemo on Friday. My Consultant wants me to start on Friday so I am following her advice. The sun is shining her today. Hope it is shining where you are everyone. Val
So sorry to hear every-ones problems and hope things improve for you all. Sadly nothing is going well for me. The Docs are deciding if to operstate again to pin my shoulder but the bone is weak and not sure if op will work. Otherwise I have to stay in this brace for 6-8 weeks. The nursing care continues to be farcical, I am still waiting to see some-one about a complaint from Sunday, out right rudeness from a nurse .
Thank jaqui for your very helpful post. The support for oh really seems to vary. He seems a bit more upbeat since we had a day of retail therapy and i managed to scoot my way around on my crutches quite well in milton keynes. I also got my dla through so i think the financial worries have been eased a bit xx love to everyone on this whatever we face xxx
Hi Myfanwy, I have suspected bc mets, one met to each ovary. Nearly 2 years after they were discovered, it's thought I've had them longer than this, my latest CT show one ovary now appearing as normal and the other is now mostly a cyst. No symptoms, pain etc.
Sorry Myfanwy, cannot answer your question but I hope someone else on here can help. If they are not sure what it is until you have your scan you will not know much else until you get the results. So another waiting game I am afraid to say. Here is a hug and to say I am thinking about you. Hope it is better news than you think it will be. Love V
Well, I saw a doctor from my oncology team this morning. They think the enlarged ovary I have is BC spread - but then again they are not quite sure. I've got an MRI scan booked and she said if it was BC spread I'd have my op within 4 weeks thereafter. No chemo or rads just different hormone therapy. I don't quite know what to make of it, in limbo again. Are there any ladies on this site who have experienced this? I also have one bone met to my spine which is stable.
I have put for you below links to some of BCC's publications which both you and your mum may find helpful. Also for added support the helpline team are here to support you both. Lines are open now until 5pm today, (Mon-Fri 9-5 & Sat 9-2), calls are free, 0808 800 6000
I hope these help. Take care,
Hi Wonder if anyone has a similar experience as my Mum, she was 1st DX 14 years ago a the age of 46, had Chemo and full Mastectomy, Tamoxaphen for 10 years. Instantly was left with Lymphodema (suffered with this todate). When the Tamoxaphen stopped they put her on another meds, which turns out was not working for her because 3 years ago it came back in her scar tissue, same place, she had rads. Then 12 months ago small mole on upper arm on opposite side, was found to be linked, shocked all Drs how far it spread across her body although it was localised, so they only removed it no further treatment, them 3 months later told her she had bone meds, in her sternum and 3 to 5 back bones, she has been having monthly drip, Onc was awful very test book no feeling, mum hates her now. Now she has been told she has an enlarged heart, could this be related or is this likely to be something seperate. More tests, scans and so on. She is so fed up with it all, dont know how to make it easier for her, breaking my heart.
Hi Rosie, have just seen, and read, what an awful time you are having at the moment. No wonder you are feeling so down with the lack of nursing care let alone the latest news about your arm. Is there anywhere you can lodge an official complaint about the care side of things? Hoping everything improves for you soon.
Hi Lucinda .... I am responding to a post from you way back in Jan. Thanks.
It is very difficult for our partners. My husband does seem more accepting now as I said above, I think time has helped.
I'm not sure of the best way to hep them.
So far so good with the Xeloda after 11 days, just started the Ibandronic Acid today.
I have been away and just noticed your post from a few days ago about helping our OHs. I think that we are at a similar point, as I was diagnosed with secondaries in December. My husband has been really good, and is taking good care of me, but it is sometimes difficult because he is not naturally as optimistic as me, and as he is 18 years older than I am has never really considered that I would die first, even when I was having my primary treatment as we both believed it would be gone after that (we have lots of friends still well 13, 18, 20 and 22 years post BC treatment). It is also quite difficult because he has quite bad rheumatoid arthritis and until my arm became such a liability I did most of the physical jobs, including driving. He was getting me down previously by telling all and sundry about my DX, but we had a talk about it and with time he seems to be a bit better about that.
The only way that I can find to help him is to be as positive as I can be myself and keep telling him how much I love and appreciate his help .... not much I know! He is coming to Positive Living sessions at the hospice with me, which seem to have helped. He was pretty down for the first month, but seems to have picked up a bit now that he is more used to the situation.
Best wishes to all of you who are having lots of pain and problems at the moment.
Tara nice to see you posting and catch up with how you're doing.
Rosie, I am so sorry, you must be really fed-up and no-one would blame you. Hope that something positive happens soon and you can make some progress or at the very least get some proper care and support!
Love and hugs xx
Thinking of you Rosie. What a terrible time you are having. I hope you will find some proper emotional support in your situation and get home as soon as possible. Big virtual hug. Jo xx
Rosie still thinking of you stuck in hospital. I wish you were my patient and you got the attention you deserve, not that I would be much good to you right now as I can't even walk without two crutches! Still its keeping your spirits up which is the hardest thing and nurses don't sit and chat with patients enough as there is no time. Keep talking to us. Wish I knew what would help you. I am so early days compared to you all and you have been through so much. I totally admire you and send you lots of encouragement and good wishes xx I hope that you are able to confide how you feel maybe to your favourite nurse, as they should know how down you are so they can help xx
Rosie, I'm so sorry and so sad to read you are having all this pain and worry. I hope things improve, somehow, and soon.
Take Care, Love Belinda..xx
Rosie, so sorry you're struggling, its not acceptable for poor nursing care, especially when youre already coping with so much.
Lets hope you can be discharged, as you previously said, asap to more comfortable surroundings!
Latest on my tale of woMy arm gas now broke above the plate that has been put in and now Ihave a brace on for 6 - 8 weeks and hope that it will heal.The legs seem worse but I'm not sure if they are or that I can now only use my left hand and balanace .is altered due yo weight of brace. Nursing care hasn't improved and the thought of being here for ever is suicidal.
thanks for the support and forgive type errors, very difficult using just left hand xx
Do keep in touch on this thread JO/Tara to let us know how you are doing. The patches are great and I find that I do not need to use them all the time. I am putting them on at 10am after my shower and remove them before bed. I am usually ok in the morning but as the day wears on the base of my spine becomes really sore. Hope they help you too. Love Val
Hello to any of you who remember me posting a long time back. I just wanted to drop by to say Hi so you know I haven't disappeared. I am mostly posting now on the Triple Neg Secondaries thread. All is ticking along ok for me. Very good wishes to you all Jo/Tara xx
PS Must look into the Lidocaine patches!
Dawn, I forgot to say in my last message than I take one 25mg tablet of amitrytyline every night for pain I had in left buttock and down left leg. Still take it and no problems since. XX V
I have been using the lidocaine patches for a couple of weeks now but it is difficult because my pain is a bit more widespread. But I'm not that big and 2-3 patches can cover quite a large area!!! so am giving it a go. I'm using them for the upper back problem, putting them on an hour or two before bedtime, but I believe it takes a week or two to notice if they do make a difference.
Had letter today for appointment to see rads cons. on Tuesday.
Debbie & jill - it sounds like both your vertebroplasty's went ahead o.k. It must be interesting to find someone else going through it at the same time - I hope you both find great benefit from them.
Dawn, Have you got pain in actual "spots". If so have you tried Lidocaine patches. I am using them just now with great success. I did use them before then stopped them for a long time. You wear them on a spot for 12 hours and you must take them off for the next 12 hours. So you can use them overnight or during the day depending when you are most sore. Sounds like they could work for you. Love val
It's about 2 weeks since I had vertoplasty to 3 vertebra t9-11. All went well under local anaesthetic!!!
Today I had a consultation with the radiologist and I am due to be mapped out in a couple of weeks in the meantime to Wait 4-6 weeks for the actual rads,which will only take a week. Then they decide wether to operate on the upper spine. Then it will be chemo due to the progression of the left lung. Can this get any worse!!!!
Just glad that therenis a plan in action ,wether it follows this plan I don't know but have to stay positive.
Its 2 weeks now since my vertebroplasty to my spine and doing ok. Still on morphine, but a low slow release dose. Am due to have some radiotherapy to the spine in a month or so - THEN I am hoping cancer decides to leave me alone to get on with my life - LOL - we can all live in hope eh girls ? Hope everyone is doing well and keeping stable and pain free. Lots of love xx Debbie xx