Diagnosed with primary breast cancer in Feb 2006. Had chemo, radio and was on tamoxifen for 2 1/4 years. Sent for a bone scan Jan 09 because I was having rib pain. Picked a hot spot on the T8 vertebra, but they thought it may be a fracture. Had a CT scan to confirm. Felt lucky that it was so localised. Oncologist decided to do a full body MRI scan and this shows that it is not confined to T8 but has spread to majority of my bones, ie the full spine, the pelvis, humerus, clavicles, sternum, etc. I feel really gutted that it was bad enough being dx with mets, but then to have that blown out of water by being first told it is confined to one area and then to be told, no sorry, MUCH MORE EXTENSIVE feels bad.
To top it up, I have this swelling under the arm on the mastectomy side. I was terrified. Apparently I have got nerve pain, which is excruciating - it radiates around the bra-strap area, into the chest wall and the armpit, causing a swelling, which feels like a lump.
I have been told that the one-dose radiotherapy I had 2 weeks ago has disturbed things and hence this nerve pain. Should settle in a month! I can hardly move at the moment and my arm feels as heavy as lead. My oncologist could not believe how I am putting up with this pain.
I have started zoladex and letrozole. I am due for my 1st infusion of pamidronate on Fri 13th. Onc feels that this should give me some relief eith the bone pain and hopefully strengthen the bones.
I was just about feeling ready to take on the world again when this has happened. Positivity is the name of this game in order to be a winner.
Dee
Dee, I’m really sorry you’re having such a bad time - I have bone mets which are in quite a few places, (spine, hips, shoulders, ribs) but I don’t think as extensive as yours. I do feel for you. I hope you can get some really good relief for your pain.
I’ve had four Pamidronate infusions since my dx in December and I feel SOOO much better - in fact I am not taking any painkillers at all now - this compared to being in agony all night, every night and on Oramorph and three other painkillers until the middle of Jan. So don’t give up hope - Pamidronate is good stuff!!
It’s hard to be positive when you’re in such pain but I know that I felt much better about things once the pain was under control, hope you will too
Take care
Lesley xx
Hi Dee,
Sorry to hear you have this dx. My story was quite similar to yours in a way because I was dx with bone mets in Dec2002. I was just about to go on holiday so over the phone I asked the onc to tell me the results of the scans. He said they had found bone mets in my hip which would account for the pain. It was o.k. for me to go on hols with plenty of painkillers so I went. When I got back and saw him in clinic he said actually it is a lot worse than he had told me but didnt want to spoil my holiday!!! I had it in my skull, all the spine, ribs, collarbone and pelvis and hips. It was a bit of a blow. I was started straight away on pamidronate and within 3 lots I was pain free and able to do most things for some time. It is only this past year that I have had trouble with pain in my lower back and hip so am back on pain killers. I have had quite a bit of radiotherapy and some has brought immediate relief and others taken much longer. Hope you notice a difference soon with the pamidronate.
dawnhc
xxx
Hi Lesley
Thanks, it is really reassuring to know Pamidronate has been so helpful for you.I have my 1st infusion on Fri 13th, so here I come PAIN FREEEEEEEEEEEEEEE!
Hope you had fun at your daughter’s dancing function.
Hope the chemo is not affecting you too badly. I don’t know if they told you, but try to keep away from people with colds, as you are in a susceptible state. Easier said than done when you are doing the school rounds!
Dee xx
Hi dawnhc,
Thank you. It helps to know that Pamidronate is so good with pain relief.I have just started some medication for nerve pain. It suddenly became bad and the severity has caused a mass under my armpit and rib area. I had one dose of radiotherapy mid Feb and he reckons that has disturbed and aggravated things. Main thing is to be positive. Just had my 2nd zoladex this am.
Dee x
Dee
Just wanted to say what a sickener - your line where you said you felt ready to take on the world struck a nerve wtih me. I was diagnosed Jane 07 and about to finish Hercptin and making choices about going back to work and getting on with my life when a CT scan showed up cancer in my back.
It is as though the world has been turned upside down.
I look at my 12 and 9 year old boys who are oblivious to the latest news and feel like sreaming WHY WHY WHY - listen to news and hear too much alcohol - not in my case - feel I am looking for answers and miracles.
Life is tough - I am staying positive for all my lovely family who are doing their best. My lovely husband who thinks I can beat it. Hang in there.
MuddyXX
Hi muddy2
Your family and the love they oooooooooooooze out will see you through. I know mine give me strength. It is tougher when we have a young family, 2 boys in your case, one 14 yr old in mine. I used to play sports and kick the ball around all the time and now it is so much harder in case I get tackled, have a fall and worse still, end up with a fracture! Sad isn’t it when you can’t use your full body works and are confined to being sensible. I don’t do sensible too well!
Is your mets just confined to the bones in the spine? That is good if that is the case. What treatment are you on? Are you able to work or is it too difficult with a family to look after too.
Chin up and we can all help each other as families do. LOL Dee x
Hi
So far (please God) only one spot on spine. I have no pain. Have been put on Capcetibine(Spell?) and Bondronat(Spell?) to strengthen bones.
I have made a decision not to go back to work - husband and boys are thrilled. I had been (sounds strange in past tense) a Careers Adviser and loved my work. I feel I want to spend time with family and we have no mortgage etc,so made sense. Will miss the money and fun but know my energy levels are shockingly bad. am 38 and feel like 88.
Just back from lunch with a friend and feel as though I climbed a mountain.
How are you feeling? I had an awful wobble last night - just sat and sobbed. Gathered myself up a bit today and now feeing ok.
Not sure what way my drugs will work. Am getting Herceptin every 3 weeks. Was diagnosed with bone problem (wont use the nasty secondary word - maybe in denial) at beginning of Feb so not sure when/ if they will scan to see how it is responding (hopefully) to drugs.
Hang in there
MuddyXX
Hi muddy
Hope your wobble from a few days ago has disappeared and you are enjoying that extra time with the family. It must be great to be home when the boys get in! For what it is worth, I think you have made a great decision staying home, esp as there is no pressure of a mortgage. I know I look forward to that part of the day when first my son and then hubby come home. I then know I have quality time to spend with them, homework and all!
I had my 1st infusion of pamidronate on Fri 13th. The combination of that, zoladex, letrozole and a nerve pain tab seems to have given me dizzy spells. On Friday night, I actually had a blackout and hurt myself on the arm of my infusion, as I fell down whilst visiting the bathroom. My poor hubby had been accompanying me each time during the night (I visit the toilet so many times on all these medicines and I drink water like a fish, which probably explains the visits). He had just nodded off, so I thought I shall not disturb him and go myself - bad move as it turns out, hence the fall.
The fact that I have bone mets in my shoulder and humerus, together with carpal tunnel syndrome, has pinched a nerve in the left arm (my good arm), rendering the arm next to useless and weighing a tonne! It is day 5 after infusion and still the pain and numbness is there because of the pinching of a nerve! I can’t lift my arm and it feels like a ‘dead’ weight hanging on to me.
It better recover soon as I am looking forward to my son breaking up for the easter hols next week. Lots of fun time. When do your boys break up?
Keep smiling. LOL Dee xx
Hi Muddy and Dee, I don’t think I’ve spoken to you before but reading this thread I just wanted to let you both know I was diagnosed with stage 4 bc from the very beginning when my hip spontaneously fractured. I had a very succesful hip replacement and commenced treatment including pamidronate for several years and I’ve now switched to Ibandronate tablets which work in the same way. I had pain when first diagnosed but the pain vanished after a few pamidronate infusions and ever since then I’ve been pain free and I can walk fine with the new hip. I fell over in the snow this year and went crashing down but nothing was broken so thanks, I think, to bone strengtheners. I was diagnosed in 2003 and feel so much better today than I did then.
Take Care! I hope things get better for you both soon. Belinda…x.x
Thanks Belinda for your positive report. Sorry you went straight to stage 4 but am really glad things worked/are working for you. So glad you did not break anything during the snow fall. It is good to know that you are doing well since 2003, thereby giving us all hope.
LOL Dee x
Hi
Just back from a family trip to London and we had such a great ime. It made me laugh and want to cry at the same time. On London eye my 9 year old had eyes like saucers and I felt so sad at all the things I will miss out on in the future. My energy levels were great now this week I will probably paythe price.
Life is not easy.
MuddyXX
Hi all,
My mum has just be diagnosed with stage 2 but has spread to the bone!!! The organs however appear clear - not sure I understand all this. How can it go the bones but not the organs and does it mean its in the blood if its in the spine.
You all seem like such strong women it is so gives my family so much strength reading your posts.
Thanks
Prithi
Hi Prithi, I’m sorry to hear about your Mum…my mets (at the time of writing this) are still confined to my bones and have been for the last 6 years…I’ve been told by my oncologist some women (14% was mentioned) do only ever have bone mets…no other organ involvement. Lots of us with bone mets have some marrow involvement too. I have tumour markers taken every 3 weeks, these measure a protein in the blood which is excreted by active cancer cells. You may find this site, advancedbc.org useful in finding out more for yourself and your Mum. Take Care…x
Hi Prithi
sorry to hear about your Mum. It’s such a shock to anyone being diagnosed and all their family and friends as well. I was in that situation this time last year and got an awful lot of support, knowledge and re-assurance for the lovely ladies on here. Maybe your Mum would like to join us? If not feel free to ask any questions and remember to look after yourself and get help if YOU need it. My 2 teenage daughters have coped reasonably well but one had some counselling last year and the other bottled it up but had a big ( and I mean big) sob to me this year on her 18th birthday as it was just about a year to the day and I think it really got to her. As Belinda says (and is testament to - hooray) there are many ladies with ‘just’ bone mets and have treatment accordingly. Others do have mets in multiple places but they also are treated with slightly different treatments, or sometimes the same. It really depends on the patient and what type of BC they have.
Take care and come back and ask any questions or maybe look at the Friends and family section for some other type of support if you need it.
Nicky x
I was told today that my cancer has spread to one vertebra - I was diagnosed with primary cancer 4 years ago. My doctor told me the cancer is in the one marrow. Can anyone explain how this differs from cancer in the bone itself? Is it better or worse?
Thanks
Kelley
Hi Kelley
Sorry you have to join us on here but you should get some good advice. I can’t help you with the bone marrow question but I hope someone will come along and give some advice - maybe the link that Belinda posted has some of the answers? If not try posting your question as a new post with your question as the topic, it then can get picked up a bit easier. Hope you are dealing with your news OK - it is such a shock (to put it mildly!) when you hear the BC has spread. I remember only too well this time last year. Do you know your treatment plan yet? I found this helped once I knew what was going to happen.
Take care
Nicky x
Hi Kelley…(have sent you 2 PM’s) I just went to bcmets.org and in the top left hand corner there’s a search button if you type in bone marrow lots of posts come up…they might be helpful…Take Care…x edited to add the bcmets website has apparently been given a ‘new look’ since I posted the link! Their search facility should be back up again in the next couple of days.