My poor wife should have been celebrating the end of her radiotherapy on Tuesday - all treatment apart from Tamoxifen finished! Unfortunately later that day we had confirmation that a suspicious spot on her sternum is cancerous. There’s still hope that they’re wrong - she’s having a PET scan next week and if it doesn’t confirm 100% they’ll do a biopsy. Also if the PET scan shows it’s just in her sternum, they might attempt treatment.
Anyway, we’re preparing for the worst. The doc, who’s been brilliant, says in the short to medium term there’s nothing to worry about. When I asked him what that was in terms of years, he said 5…
As you can imagine, we’re totally messed up. We’ve a baby girl aged 10 months and our son is only 2. We’re blessed to have them, and have read about poor ladies who’ve been made infertile by the treatment before starting a family, but you can imagine what’s going through my wife’s head when she thinks 5 years…
Is there anyone who’s been living with bone mets for more than that who is reading this? Also, we’re planning to sit down with family soon to discuss finances, practicalities etc so we can get on with enjoying life and not worry about that sort of thing if she deteriorates rapidly. Is this a good idea, or perhaps it’s a little soon to be discussing what’s going to happen when she’s not around? Breaks my heart even thinking about it. Cruel sodding world.
PS My wife hasn’t been on here since we had the news - it’s too difficult for her. But in the past for her treatment etc she’s found it such a comfort so thank you.
Just wanted to say I was so sorry to hear about your wife’s news. And so many of us find the waiting for scans and then results really difficult - limboland.
I don’t have bone mets (liver mets instead) but I am fairly confident in saying that there are some ladies with bone mets who are going strong after more than 5 years. Hopefully one of them will post a response and give you more detail.
Hi, I’m in my 5th year of living with bone mets. I was diagnosed in my 40’s with both bc and bone mets in 2003 when my hip fractured. I feel very well, I’ve had a successful hip replacement, I’m pain free (need no pain killers) and so far have only had hormonal treatment which has controlled the cancer completely along with bisphosphonate tablets (bone strengthening treatment.)
In the five years since my diagnosis new treatments have emerged so I remain hopeful of being here a good while yet. Hope this posting helps and hope all’s well with your wife’s scan next week.
Just to add I also got to know a fellow patient who lived 10+ years with her bone mets.
Best Wishes to you both.
So sorry to hear about your wife - and you, of course. Often, I think it’s worse for the partners.
I hope the replies you’ve had have given you both hope and encouragement. I know they’ve instantly helped me. I’m into my third year of bone mets now. I was given two years at the outset, then five. Now, I feel the world’s my oyster. As Belinda says, new treatments are being found all the time. The most positive people I know are the ones who don’t let it rule our lives.
I was diagnosed at 40 with primary bc and had a young child at that time and then, 10 years later was diagnosed with secondaries to my bones and liver. I’m coming up for my 4th year of living with secondaries this year and I put that down to the fact that the improvement in drugs and treatment in the past 10 years has been great. Unfortunately my mum and her sister never had the opportunity to prolong their life like I have because I know if my cancer had come back quite close to my initial diagnosis I wouldn’t be here now.
Sorry can’t help you with the bone mets, as I have secondary liver mets. I am 39 and have a 4 year old and 1 year old and when I was diagnosed last July with bc and liver mets all within 10 days, I thought I would not see my sons 1st birthday or christmas etc. I know that I am only recently diagnosed but just wanted to say, there are lots of ladies on here who are 5 years + with lung, liver and bone mets and they are all wonderful ladies and give us some much encouragement and support. I also find that my children give me the determination to fight so hard and to get on and live normal, as don’t really have a lot of choice. The first 3 weeks after my dx until I started treatment I lived in limbo and became a bit of a hermit but then bounced back and started to do all my normal daily routines.
Please give your wife my love and to you too, and I do hope that the results are good. I don’t know if it is too soon to think that far ahead, although when I was dx I wrote a word file about “my affairs” all our bank stuff and shares etc, so my hubby wouldn’t be left in the dark, as I do all the financial stuff really. I do think I should plan more for the eventual, but think I will know when the time is right to do more.
It is so hard when the children are young, as my worst fear is not seeing them grow up and I take hope from stories from others who are going strong after 5, 6 or 7 years and it makes me be more positive,
Sorry rambling now. Take care and let us know how you get on.
Really sorry that you and your wife have received this news. I cannot offer the reassurance of being around for ages after diagnosis as I was only diagnosed in October with bone mets. I am 39 and we were about to start a family which had previously been delayed due to primary diagnosis. I was, and still am to a degree, devastated. I thought my life was over. However, since then I have realised that there are a number of women living and coping with secondaries in their bones for an inspiring number of years and through this site I have recieved hope and encouragement.
In terms of finances, I would recommend that you contact Macmillan or ask your GP to be referred to a Macmillan nurse in your area. They do an excellent booklet on the cost of living with cancer and offer a volunteer support service to help with transportation and many other things. I have recenlty applied for Disability Living Allowance (which isn’t means tested) which six months ago never knew it existed. I know this won’t help you come to terms emotionally but it may help you to see what is avaialble.
Obviously we are all different and our cancers all behave differently and our bodies react differently but you will see a way through this intense and bleak period and I am sure that a number of women living with bone mets for a number of years will step forward and offer their support to you both.
So sorry to hear that your wife has had a probable diagnosis of bone secondaries – such a blow for everyone, and sadly you don’t get much information from the oncologiest, so its very good that you’ve posted here.
Like Belinda, I’m well into my 5th year with bone (and liver) secondaries – think I had bone secondaries for at least a year before diagnosis (pains here and there) so that puts me into my sixth year! Although I do take pain meds, it’s only ibrprofen or paracetamol so far, and most days, I feel absolutely “normal”. Two really important treatments for bone mets (metastases – where cancer has spread outside its original site) are bisphosphonates – drugs that protect and build up the bones against cancer infiltration – and radiotherapy, which can often be used to reduce mets and their pain. I’ve been taking the tablet bisphosphonate Bondronat for over four years, and there are intravenous ones as well – if your wife has bone mets, she should receive at very least bisphosphonate treatment as a matter of course, and may be offered other treatments as well (I also have the tablet chemo capecitabine, and exemestane, an aromatase inhibitor for my very oestrogen-receptive cancer). If she doesn’t, you might like to get a second opinion.
Others who have posted mentioned Macmillan nurses – a huge source of support & information for people diagnosed with life-threatening illness like us. They are also very useful at co-ordinating any services you might need to support your wife and your family, including financial support, e.g. completing the Disability Living Allowance application – do get in touch with them. In addition, I have had fabulous support from my local hospice, where I signed up as an out-patient when I had my secondary diagnosis. Each hospice is different, but many offer sessions with their doctors & nurses, as well as complementary therapies (massage, aromatherapy, reflexology, reiki) provided by therapists who understand the needs of people with cancer – helps me to relax and feel less anxious – really improves my quality of life.
Finally, please encourage your wife to speak to others about how she’s doing with all this – I have a very supportive partner, friend & family, but I would have been “lost in cancer-land” without taking part in forums like these, not to mention meeting others in the same boat as me.
Hi again, after reading Marilyn’s post thought I’d just add although I was diagnosed in 2003 I’m also probably at least 6 if not 7 years into living with bone mets taking into account I was diagnosed by fracture.
Belinda.
Just read your posts and wanted to tell you that I have a friend who also had mets in her sternum (nowhere else) and she’s just had an operation to remove her sternum. She came out of hospital a week and a half earlier than expected and is doing brilliantly.
Hi,
Just wanted to say I was diagnoised in August 1999 with primary and bone secondarys all at once and while I have had ups and downs think that at just over 8 years I’m not doing too bad, of course we all wish for better but, I’m still here.
Hi Colm,sorry to read about your wife.I can relate to how you are feeling as my wife has had breast cancer twice resulting in 2 mastectomys and reconstructions,aslo had a tumour in liver removed.tow weeks ago we were told that the dr is 99% sure that it is now in the bones ,we are now awiating an MRi scan to confirm all the other tests she has had.I agree with you that its a cruel world
Hi Colm
I too was diagnosed with a ‘spot’ on the sternum and liver mets. After Taxotere and Herceptin (2003) the ‘spot’ has not been seen again, despite lots of CT scans over the years. The doctors are not sure if perhaps it wasn’t a tumour at all (I never had a biopsy - no point with liver mets too) - inor if the treatment did knock it into submission - but the fact is it isn’t there. Angee is right to say that everyone’s cancer is different and that individuals react differently to treatment - I am trying to give hope here, without being unrealistic - but your wife does not have spread to her organs and that is a significant plus.
Yes I would have a look at your finances and rid yourselves of as much worry and financial burden as you can. You will get through this initial period of indecision, fear and treatment but you will both come out the other side. The others will tell you, Belinda, Zippy and many, many more, that you will be able to live life with bone mets and concentrate on the joy of that life. Yes the ‘how long have I got’ will intrude and the unfairness of it all will not go away but you will be able to get on with living - but it does take time.
Sorry i have re-read this and it does sound like preaching, it isn’t meant to be so please take this in the spirit it is intended. My thoughts to you both
I hope the posts here are giving you both some hope that there can be a future. I hope even more that the ‘suspicious spot’ turns out to be nothing so good luck on the PET scan results. My own dx was 18 years ago now with extensive bone mets discovered 6 years ago. Once treatment was started for that I have lived relatively pain free, just need to be a bit careful. I am not in your situation with young children, mine are grown up now but I can identify with the awfulness of thinking ‘is this it’ and not believing I would be around much longer. Now I have got used to living and believe I could be here for a long time yet. It just seems that we have to go through that difficult time before we can begin to hope again. Hang in there.
and believe I could be here for a long time yet. It just seems that we have to go through that difficult time before we can begin to hope again. Hang in there.