It’s hard iamok, when the plan changes because you automatically assume the worse, but the plan can change continually for lots of reasons, like when new things come up or old treatments stop working. When my recurrence happened I was given a treatment plan of chemo, surgery, and then hormone treatments, but then I was diagnosed with bone mets and suddenly surgery on the primary was taken off the cards. My worst fear was that it was because they’d decided I was going to die soon anyway so wasn’t worth bothering with. I now know, after talking with the Macmillan Nurse and my Breast Care surgeon and Oncologist, that some oncs and surgeons believe removing the primary can have a negative effect on the secondary. There’s lots of studies that discount this theory now but that’s not the point, the point is the treatment plan didn’t change because I was going to die anyway, it changed because the oncologist thought it was the best treatment for me at that time.
It would be wrong of me to tell you there’s never anything to worry about and people never die from this disease, we all know that’s not true, but you’re nowhere near having to think about that yet. Even if the tiny area you speak of is cancer, the prognosis for single hotspots is very good. There are people on this thread who were diagnosed with not just single hotspots but with extensive bone mets who are still going strong and living as normal a life as they can, 8,9,10 years and counting later. Wait until you’ve heard what the oncologist has to say before you start worrying.
It’s a good idea to write a list of all the questions you want to ask. I also tell my hubby what’s worrying me just before we go in because I tend to be a bit quiet and don’t like speaking up so if I don’t say what I want to say he will.
Mandy, I am not surprised that you are confused. The problem with scans on bones is that it is difficult to distinguish between cancer and other conditions such as arthritus. It sounds like your onc is not certain that you have bone mets. Its important to get the initial assessment correct as this will determine the treatment plan. Not knowing will raise your anxiety levels. If it is a small bone met you can still have an aggressive curative treatment plan. Lemongrove and Finty are the experts in this. They will be able to give you best advise. The good thing is that you have had the primary removed.
Avril, bones mets cause your bones to thin and then they can fracture. I am guessing that the bone density scan is to help assess if there is a need for any more localised treatment or areas that may become problematic in the future. I am guessing that you are already on some sort of bisphosphonate.
Lemongrove thanks for the comment. I am actualy aware that cyberknife can indeed be used, even to heavily irradiated areas. Just as well cos I could need it! My remark about using up options was only referring to the amount of standard rads I was being offered to any given area. Keep up your good work with pressure on govt. bodies etc.
Lyndyloo it was 12 years with primaries (1990-2002) then 2002-now with secondaries so 21 years in all! It doesn’t seeem get me down at all which surprises even me, with the exception of times on chemo - I really hated that part of it. I have probably been very fortunate because we have our own business and I have been able to continue to be part of that. We have a nursery set in beautiful surroundings and all that I think contributes to a sense of wellbeing. For many it is is very hard when they have a young family, or are unable to continue working which brings financial problems. Then because we work from home I have always had my hubby around. It must be very hard to cope if you live or spend a lot of your time alone. So really cancer has become part of my life - there is no escaping from it so I have had to learn to live with it.
Mandy hi and welcome to ‘our’ thread :). I am not surprised you are in turmoil. It is very hard to cope when the professionals are telling you different things. Don’t be afraid to tell them you don’t understand. Maybe it would help if you could ask the breast care nurse to attend your clinic appointments with you then you could talk to her afterwards about what is said. I don’t for one minute think one is telling you wrong - it’s just that there are different ways of tackling the problems. Like Crawfo says try and write down the things you want to ask - because I find it is really hard when you sit down with them to remember what you want to talk about. Hope you get some answers on Monday.
Your bone density scan may be to get a baseline before you start a treatment that can cause bone thinning - AI’s for instance. I had one recently before going on Femara.
Hi iamok - what an awful shock to get a new diagnosis when things seemed to be going so well, no wonder you are in turmoil. It sounds like your onc is reacting very quickly. Identifying what is causing the hot spot in the spine is top priority, as this will determine your treatment plan - if the CT scan isn’t clear can you push for an MRI? At the very least the CT scan should be looked at with the bone scan - this often doesn’t happen as nuclear medicine scans are a different speciality from CT scans, and the reports are often written in isolation. (Twice now I have had a CT scan miss a bone tumour that was found when I asked for a review of the CT scan and bone scan together.)
If it turns out the area is a bone met, you should start bone drugs immediately. I share your concern about no chemo, particularly as the new tumour was grade 3 - I think you should query this very carefully, and if necessary ask for a second opinion. Try not to get rushed into making a decision on Monday if you are not happy.
Morning Ladies
Thankyou so much for your replies
I have started to make a list of questions for my onc.
Finty I have got the impression she wants to get rid of my oestrogen, first, I have started on zoladex and I think she has referred me for an oopherectomy. When I spoke to the BC nurse she said this is a different way of treating than chemo???
They did talk about bone strengtheners
I just have it in my head what if any nasties from this new primary or the first one in fact are floating around, what is the best way to tx them???
Also completly off this track, when can you drive after mx, cos at the moment I feel claustrophobic, and I have been walking miles just to get some space to think things through. My OH has been brill, but genus off work to look after us, this sounds so ungrateful but I feel smothered!
So used to being independent
The sun is shining here, off out to my sons football tournament. He’s 13 and really understands what’s going on this time, I feel so sorry for him, I was laid on his bed with him last night having a big discussion about god. He then informed me he is going to run for PM, so he can bring back all the soldiers from afghan, oh and bring back cheesy bears for school dinners! LOL. My daughter is 11 and thankfully seems quite oblivious!
Have a lovely day
Mandy
Hello Iamok,
sorry to read about your experience, and will pray that the hot-spot turns out to be something else.
I basically have three things that you might like to discuss with your medical team.
(1) As others have said, it is important to establish whether the hot-spot in your spine is actually cancer. But in addition to this, if it is a metastases, it is also important to establish what it’s receptor is. The thing is, metastases can and do change their receptor’s - so although a primary may have been oestrogen receptive, there is no guarantee that a seconday will be. I think this is particulalry important for you, because you may have had progression while taking medication (Tamoxifen), to prevent the uptake of oestrogen. Therefore it is vital to find out if your cancer has adapted to exist without oestrogen, otherwise endocrine therapy or an oopherectomy, won’t control things.
(2) If it turns out the you do have a secondary, and it not hormone positive, maybe you could discuss things like Chemotherapy (to try and destroy cancer cells in you blood -micro-mets - and reduce the size of secondaries), and radiotherapy at a curative dose for the spine met ( and for this you could look at Cyberknife stereotactic radiotherapy, which is far more precise and tissue sparing than conventional rads).
(3) If you only have one met, then you will fall into the category of oligometastatic, and there is a lot of evidence that treating oligometastatic disease aggressively (this means surgery to remove the primary/effected lymph nodes, followed by chemo, various types of rads, endocrine therapy and bisphosphonates), prolongs survival.
The hospital with the best survival rates for stage 4 cancer in the US (and therefore the world), is the Anderson Cancer Centre (which is part of the University of Texas), and they have done many studies which support this approach, and I would recommend that you gen-up on these, so that you have evidence to argue for this approach with your medical team (providing you want to take that route of course).
Sorry for the length of this post, but hope it is of help.
Lemongrove you mention secondries and whether they are hormone receptive. How can they tell from a bone scan if they are hormone receptive. I have never been told what type I have got.When I had my mastectomy in 2009 they said it was hormone receptive. When I was diagnoised with bone mets in October 2009 they never mentioned anything. I asked the other day how do they know if it is under control just by taking my bloods to measure my tumor markers they said it is used as a bench mark. I rang for my results yesterday and the tumor markers are still the same 16. It has been like that now since April 2010 when I finished all my treatments. The girl I spoke to said with it remaining the same for over a year it is a good indicator that things are stable. She keeps saying they treat this as a chronic illness. People she sees in clinic have had it for 18 years plus. I keep wondering if they had found the bone tumors the same time as the breast cancer would they have taken by breast off. I am going to see the consultant regarding breast reconstruction on 12 July to see what he has got to say. Has any ladies had breast reconstruction on this thread. Dawn thank you for responding to my thread much appreciated. I take on board what say. Must finish have to start the housework now. Be in touch soon.
As far as I know the only way to tell the hormone status of a met is to do a biopsy, which of course is not often done with bone mets, and can be difficult depending on the location. The other way is to wait and see what the response is to hormone therapy to get an indication - but this is by no means definitive as therapy can fail even with 100% +ve mets.
Hi Lyndyloo,
Please don’t worry about this. Your medical team would only start to look at whether your secondaries had changed receptor, if the treatment you were on began to fail, and you had progression. The reason I mentioned that to Iamok is because she has experienced progression despite being on endocrine therapy (Tamoxifen), and so it is something she might like her medics to check. I have read articles suggesting that when biopsied, up to two thirds of secondaries have a different receptor to the original primary (indeed if you read Dawn’s experience that is what happened to her), but if your cancer is responding to treatment, there is no reason to worry.
Hi
Thanks to Finty for introducing me to this thread. I had a WLE and SNB yesterday for a new primary that was diagnosed about a month ago. I was dx with bone mets in my spine 2 weeks ago from a scan I had to check blood supply for a recon on other breast. Had BC in 2000 with WLE chemo rads and tamoxifen.
Everything has changed so quickly in the last few months it is hard to get my head round it all. Think I will be treated with bisphos and tamoxifen but havn’t seen onc yet. Feel a bit like I have hit the scrap heap early.
Probably still in shock!
Any advice welcome.
Claire
Lemongrove not sure if you mean me when you say Dawn’s experience or the other Dawn but in case it is me - my receptors never changed. They found I was her2 positive when checking back on the last lot of tissue from a mastectomy. I was always er/pr neg but her2 wasn’t checked for back in the days when I was first diagnosed. (sorry if you meant a different Dawn :)).
Sorry Dawn, I did mean you, and got my facts wrong - I do apologise.
I remembered you saying that that your medical team discovered you were Her2 positive after doing a biopsy during surgery, and assumed you had been er + previously ( because I thought I had read that you had taken endocrine therapy).
Apologies again.
Lemongrove I am not surprised you get confused at my history. I did take endocrine therapy (tamoxifen) but not because I was er positive. Some years back they were dishing out tamox like sweeties to any and everyone!!! When they discovered I had a recurrence it was stopped immediately. The her2 bit was found in 2003/4 when chemos were failing and they checked back to tissue taken in 1999 (I think)from my 2nd mastectomy.
Has anyone had to give up work because of spine mets?
I work in a hospital and have to do a lot of lifting but am scared that my vertebrae will start collapsing if I carry on. Unfortunatley I am main wage earner and dont think I could get by without work.
Dr said I needed to be carefull with my back.
Anyone had this problem before?
Claire
I have 2 mets in my spine and one in my hip. Diagnosed in 2008. I am still working full time but I don’t have a physical job.
You will be covered by the Disability discrimination act, this requires employers to make a reasonable adjustment for disabled staff. My adjustment is that I have time off for treatment and scans etc. McMillan has published a booklet on working with cancer. More employers are beginning to recognise that due to improved treatments more people are choosing to work with a secondary diagnosis.
Your employer could put you in a role that does not require lifting but keep you on the same grade.
Hi Alex
Thanks for that info. Great to hear you are doing so well and continuing to work. Gives me a lot of hope for the future which is just what I need at the moment.
Claire
Hi Clare, I had to give up work when I got diagnosed with bone mets. I have had to learn to live with what I can and cannot do now. I have been advised not to lift anything heavy or use the hoover. Whenever I attempted to try to do something, like lift a box from a top shelf, I ended up with problems. It took me a long time to do what I was told. However I have now been living with Bone mets for over 12 years now and am still getting around and enjoying life.
However I have had to learn to listen to my body and if I need to rest and have a lie down to ease my back, I do just that. I am also on many painkillers including morphine. I did give up work and applied for DLA although I knew nothing about this benefit at first. It has been a lifesaver for me, taken the strain and financial worry away, and allows me to get out and about instead of being stuck at home. I wish you well. Everyone is different in deciding what is right for them. I hope you manage to make a decsion that is right for you. Val
Claire,
I too, have mets in my spine. One of the vertebra (T11) fractured and collapsed, causing spinal cord compression. I had to have surgery to stabilize my spine and I had a course of rads afterwards. This was in late 2009, early 2010. Since then I have been managed on Letrozole and now Tamoxifen, combined with Herceptin.
I was a nurse and retired on ill health grounds. I am 57…soon to be 58 - on Tuesday :)) - so had spent many years accruing my ‘gold-plated pension’. It was my choice to retire, as I felt I would not be able to carry out the requirements of the job, which like many jobs, was both physically and mentally demanding.
As for your vertebra collapsing, you should be on some sort of Bisphosphonate to prevent this, as well as Calcium/Vit D supplements.
Your Oncology team will be keeping a very close eye on things.
Like Scottishlass, I too listen to my body and rest when necessary, which I have to say, was a totally alien concept for me! I take regular painkillers as well and have found a level which suits me. I also receive DLA, which has been a great help. You can receive it, even if you are in full time work. It helps towards transport costs for hospital appointments etc.
Hope you have found this useful.
Isobel
Thanks to both Isobel and Val for your advice.
I am finding it hard to take it easy even 2 days post op. It doesn’t come naturaly with a full time job and four teenagers! I will look into retiring although I am only 44 and have not had an NHS pension for long.
I think I will be starting Tamoxifen and Bisphos when I eventualy get an appointment with the oncologist.
Anyway I am planning on staying arround for as long as possible.
Thanks for all the support.
Claire
