Hi, looking for some advice, words from anyone who can help. I had bc in 2010 and am now looking at the possibility of secondary bone mets to spine and hips. I am booked to have a bone biopsy to confirm this or not which I had delayed to be after my girls had returned to uni, (they at present have no idea that bone mets is a possibility)but they are home longer than I expected and I will have to come clean about what is going on. The question is how do I tell them, they are 19 and 21 and as one is trainig to be a nurse I can’t fudge this. My onc has said it’s 80/20 that it is secondaries with the 20 being the not unfortunately. I know they are going to be mad at me for not saying anything before now (I was told last October that there were concerns) and my very supportive brother and sister in law think it is about time I let them in on the concerns but I don’t know how to even start the conversation. I am a single parent and have been since they were little so don’t want to panic them that I might not be here for ages as my onc has said that if it is bone mets with the advances that have been made in the last few years he feels confident he can keep me alive long enough to die of something else.
Please any thoughts, suggestions, comments totally welcome,
Alicats.
Hi,
Sorry you have this worry and I’m afraid I can’t really help you with how to tell your girls about the possibility of bone mets as I don’t have kids. I think one of the worst parts about this disease is the having to tell your family side of it. I would perhaps concentrate on the optimistic outlook your onc has.
I was diagnosed with bone mets at the same time as my primary in July 07. Had chemo, mx and anc, rads, hormone therapy. Slight blip early last year when I had a one-off rads blast for a bit of spread in my spine but otherwise have been relatively ok. At the moment my treatment is a bone strengthening drug zometa by drip once a month and arimidex with zoladex. Indeed, 2 weeks ago I had a second mx to balance me up (my choice) and hopefully help my spine a bit through better posture. I have a new lifestyle especially as I retired early from work at the age of 43 because of the cancer but have had lots of lovely hols, spent time with family and friends I wouldn’t have otherwise done and am generally loving life.
I would also say have a look on the bone mets thread - it is very long now - and you will see how many ladies are living with bone mets and who have lived with them for many years.
Good luck.
Liz
Hi, I would recommend that you just tell them thet you are having investigations into the possibility of a secondary diagnosis but that you are not sure yet. Probably best to do it whilst they are at home where they can see you are well.
I have two sons aged 19 and 21 they have always been aware of my diagnosis and I told them of my secondary diagnosis as soon as I was aware…the youngest is doing medicine at university away and so I went up to visit a few weeks later to let him know I was still ok. Both have coped! Infact recently he has done an essay on the role of bisphosphonates in secondary breast cancer as part of his course…proud or what! I can’t imagine not sharing something so important with them. I think the longer you leave it the harder it is. Pamx
Hi Alicats
So sorry you are in this dilemma
I was diagnosed with bone mets last June along with a diagnosis of cancer in my good breast.
I have a 12 and 14 year old and although I told them about the breast cancer, I decided not to tell them about the bone secondaries unless I had to have chemo. So far I have had similar tx to lizcat and they are none the wiser.
I know this is such an individual choice but like you I wouldn’t know where to begin and I can’t comprehend it so I don’t think they could.
As your onc said the treatments are getting better all the time and they could be living with this worry for such along time.
I lost my friend recently to bowel cancer and she didn’t tell her daughters until very near the end, but had made sure they had loads of brilliant memories and her girls who are the same ages of yours do not resent her at all
You know your girls and I am sure as herbgarden said they will suprise you.
I wish you well
Take care Mandy
Hi Alicats,
I hope that you managed to open this conversation with your children.
I have two children (11 and 13) and I find that figuring out how to start these difficult conversations is the most challenging thing.
My counsellor suggested that I use a really open question, such as, ‘Do you have *anything* you would like to ask me?’
Without knowing it, I had always tended to use much more closed or directed questions such as, ‘Are you alright?’ or ‘Do you understand what this latest news means?’ Using open questions worked for me; the concerns that my children chose to raise first were not the issues that I had anticipated at all.
Hope that helps, and best wishes.
Hi Alicats,
I think much depends on how your girls are. I suppose as time has passed since your dx they see you as just getting on with life. It would be great for you if they are around to ask them if they would like to come with you when you have to go for the biopsy - explain then what it is for and say how encouraged you have been reading the forums that so many women seem to survive for years with bone secondaries. I was dx with bc in 1990 and bone mets in 2002 and there are a few others on the forum. Have you had a look at the ‘Bone mets - please join in’ thread.
Hope you find a good moment to open the conversation. Fingers crossed for you that you wll be in the 20% group.
Dawn
xx
Hi
Thank you so much for your advice. It was actually far easier than I thought. They had both realised that I was not getting back to normal and I think were relieved when we were able to talk about it. Your imagination can always come up with far worse than the facts can’t it. I was able to reassure them that tests on my liver/lungs and the brain scan had all come back ok so far and that even if the bone scan was not ok then this is something that can be controlled so I expect to be around for a long time.
Well, the bone biopsy was far easier than I thought it would be, much better than the bronchoscopy I had in December anyway. I did go all out on the pain relief though. Just playing the waiting game now until next wednesday when I get the result. Would you believe the hardest thing at the moment is that under “new rules” regarding car parking permits I no longer qualify. As i live under 1 mile from the hospital (just!) and do not have a blue badge they expect me to walk to and from work. While I came get around ok there is no way I could walk a mile to work and home again. and the cost of all day parking or a taxi would be around £40 per week. Luckily my boss feels the same way so is on the case to get this sorted.
Thanks again for the replies. I have been reading the bone mets thread so will post on that next week, hopefully with good news,
Alicats
x
Hi Alicats
I’ve only just seen this thread and see you’ve already had some good advice, and have told your daughters. I have 2 daughters who I had to tell about my bone mets dx when they were 17 and 19. My dx came completely out of the blue, so it was a total shock for all of us, and the rest of my family. They were obviously very upset when they were told and we didn’t know much about bone mets, treatments, life expectancy so it was all doom and gloom. That was 4 years ago and I’m currently doing really well, just on tablets for hormone treatment and bone strengthening. The secondary dx is part of our lives now but doesn’t rule it and we all know my condition can worsen but, for now at least we get on just as we did before. In fact my youngest, who hadn’t even finished A levels back then is now about to sit her finals at uni and I’m so proud of the way she has got on with her life. I really wanted them both to become more independent and this has happened especially as my eldest has also now gone to university, something she struggled with when my dx was made.
Having said that I of course hope you are in the 20%.
Good luck with your results
Nicky x