Hi everyone, I feel a bit embarrased posting on this forum seeing as im a guy! However I feel as though I need a bit of help and support. 14 years ago my mum suffered from breast cancer. Very recently, I have been informed that she has secondary breat cancer, which is affecting her hip bone. The hardest part of this whole thing is not knowing the answers. I know its not curable, and I know a prognosis can not be given because there are many circumstances affecting each indivudual, but what is the average prognosis?
Thanks to everyone that reads this and replies. Its quite tough, im only 18 and its alot to deal with, I dont know what the best thing to do is!
Welcome to the forums. I am sorry to read of your Mum’s recent diagnosis. I’m sure some of the other users will be along soon to offer you support and advice but whilst you wait you may find it helpful to read the BCC booklet on Secondary Breast Cancer, it can be found by following the link below:-
Dont feel embarrassed about being a guy on here! Im in a similar boat to you -going through the dont know what to do for the best stage myself at the min! Im 25 so older than you but I still find it difficult - I think anyone does!
My mum was diagnosed with secondaries in Dec 08 and Ive jst recently started to get my head around it all. At first I thought I didnt want to find out information but Ive took a lot of comfort in this site and other research I have done in finding answers to my questions - Im one for having to know everything (unlike my Dad and Sister). My mums situation is diff as she has lung mets and she was only given a prognosis as she probed her consultant for one - but like you said prognosis is diff for everyone and the figures they do give are an average figure.
Im sure someone with a lot more knowledge will be along to give you the info you want.
hi eddie ,sorry to hear about your mum ,i can understand how worried you must be ,as a mum with secondary cancer my self with an 18 yr old daughter ,we have found it very hard to comunicate to each other ,on the one hand i want her to know whats what but on the other im trying to protect her as much as i can from the grim realitly that is my case ,BUT i must stress every ones cancer is differant and we all react differantly to treatment ,so i cant tell you what is going to happen in your mums case ,have you tried to talk to her about how you feel ,it must be a shock to her to have to cope again with the news ,but treatments have come so far in the last few years that everyones life expectancy can be prolonged with drugs ,maybe you can take her out for a meal and broach the subject ,dont nag ,as im sure she will open to you in time ,it was a few weeks before i told my daughter about the liver secondaries and what that would mean ,she has already watched my sister pass away from bowel cancer and of course is frightned as to the future ,im not going anywhere if i can help it and im sure your mum is a fighter too ,you can live a long time with bone secondaries too !i.wish you both strength for the future ,take care .lynn xxx
Hi Eddie
I think you must be a very supportive son to try to find out anything that can help your Mum. I too have an 18 yr old (well, very nearly!) and a 20 yr old so it must be very scary for you. However you have come to the right place to ask questions. I don’t know from your post whether you or someone else has been with your Mum to any appointments but it is worth it for her to make sure everything is understood and the right questions asked. Us ladies with secondaries (mets) don’t seem to think very clearly at times! Prognosis is very difficult as this disease is unpredictable but her oncologist (onc) will be able to give her some indication, that’s if she wants it. It will depend to some extent on what type her BC (breast cancer) is eg is it hormone receptive (ER+ and/or PR+) or Herceptin positive (HER+) this will also determine any treatments that are prescribed. I too have bone mets in my hip and had chemotherapy (chemo) last year to flush out my system and try to prevent any further spread for as long as possible. I am now on hormone tablets as I am Er and Pr + which is the most usual way of continuing treatment either if you have or haven’t had chemo. I am not HER+ so don’t have Herceptin. With bone mets your Mum should go onto bone strengtheners as well (bisphosphonates) which can be tablets or by a drip in hospital every 3-4 weeks.
As you’ve said it’s not curable but my onc says it should be treated as a chronic condition that can be controlled. There are ladies on here who have been dealing with mets for many years and really gave me strength and support when I found out about mine last year. I have also recently spoken to a friend who’s mother died aged 76 who had bone mets for years having been originally dx with BC aged 46. It continued to appear in various bones but she eventually died from a cardio condition not BC. You can do a ‘search’ on here for information once you know a bit more about your Mum’s specific treatment which may answer some of your questions but feel free to ask any others. I will do my best to help and I’m sure there will be more answers later today to your original questions. If your Mum wants to join this forum as well she will be more than welcome. We are a friendly, informative bunch who still manage to have a laugh despite all being in the same boat. Life doesn’t have to stop as soon as you know you’ve got mets (which is what I thought last year!)
Take care and I wish you and your Mum well.
Nicky
I am sorry to hear about your Mum’s condition, but as somebody else here said, bone mets are now being treated very much as a chronic condition. I don’t think there is an average prognosis. Everybody reacts to treatment differently and it also depends what type of cancer your Mum has. I am given Zometa to strengthen my bones, I get it every 3 weeks in a drip. So far it has kept my bone mets at bay. I didn’t get new ones and the ones I had have stayed the same. I hope your Mum will have the same result once they start treating her.
It is great to read a post from an 18yr old young man who cares enough to go looking for info. My kids were 16 & 18 when I was diagnosed 19 years ago. Like your mum I developed secondaries in my bones. These were very extensive back in 2002 when they were found but I have been on bone treatment (bisphosphonates) for 6 years now and that stabilised the disease. It is very true that it is now treated almost as a chronic disease and people can live many years with it. One caution there though - it is still possible for the cancer to spread to other organs but your mum will be monitored carefully for any sign of this. No one knows why some of us ‘just’ have spread to the bones, whilst in others it attacks the major organs. Don’t be afraid to show your mum how much you care and that you are willing to talk about it when she is ready.
Hi Eddie…what a shock for you…do post whenever you want to, need to. I have a daughter and know what she went through and is still going through.
I was diagnosed with both breast cancer and bone secondaries when my hip spontaneously fractured in 2003. I was 44 at that time. I was given a hip replacement and I’m still here, feeling well, pain free and have full mobility. I have bone mets elsewhere but have luckily had good responses to various treatments and like others here I’m on bisphosphonates to strengthen my bones, they are not a chemo and after the intial treatments are pretty free from any side effects.
Give your Mum my best wishes…what treatments will she be having? Take Care…Belinda.
Eddie, sorry to hear about your Mum. I have kids aged 24, 22 and 16. It is difficult to know how much to tell them, but I find their support makes me feel so much better. The older ones are back home after university, some people moan about boomerang kids but I am really pleased they are around.
You ask about a prognosis… It is important to remember that the medics will give a prognosis for the purposes of insurance/retirement etc which may well be different from what, with luck and good treatment, may be what you can hope for. I was given a 6 month/one year prognosis for insurance and ill health retirement after being diagnosed for my liver and bone mets. That was about 2 years ago. Fortunately I have responded well to various chemo and radiotherapy treatment.
Hi Eddie, sorry to hear about your mum but it’s great that you’re looking for answers and being so supportive.
I’m very new to all of this myself having only been diagnosed with bc and bone mets together in December 08. My bone mets are affecting my spine and ribs and I have already been given one bisphosphonate drip of a drug called Pamidronate which will help strengthen the bones. I am told I will be having this four-weekly for the foreseeable future. I haven’t been told yet whether my cancer is ER positive or negative so not entirely sure where my treatment is going from here yet but will find out soon.
As to prognosis, all I’ve been told so far is that I have a good chance of seeing my girls grow up (they are 10 and 12) and that my oncology department have several ladies with bone mets who are still doing well ten years on which gave me a lot of encouragement. The first oncologist I saw also kept telling me how new treatments and drugs are being developed all the time and things are getting better for mets sufferers - I have to cling on to this sort of hope.
I know it’s an incurable condition but I’m trying to treat it as a chronic one, that makes it much easier to deal with and I hope your mum will be able to look at it in the same way.
What a lovely young man you are to seek advice from this forum. I have two sons in their early 30s now but I’ve never asked, and they’ve never said, whether they’ve done any research about my condition. But I tell them about my treatment suchlike.
I was diagnosed just over three years ago with bc and bone mets to spine, ribs, hips, sternum and humerus. At the time I thought well that’s that, girl, your days are numbered. I was in considerable physical pain at the time but now, after chemo, radiotherapy and tablets (Aromasin for the bc and Bondronat for the bones), I’m pain-free, walking without a stick, playing with grandchildren and basically enjoying the good life. And I’m sure it will be the same for your mum and you’ll have her for very many years to come.
In fact, why not invite her to join the club no-one wants to join? She’ll get lots of useful advice and make some wonderful friends, as I hope you will too. Vic sounds a nice lad, for starters. Hi Vic! Hope you and your mum are well
Im actually a girl lol. My mum is ok though very nervous as she starts her herceptin tomorrow and Taxotere on Friday, just trying to be there for her as much as I can. Shes desperately tryingf to get internet sorted at home so she can get on here and talk to others so she doesnt feel so isolated - she said shes sick of people either getting upset when they talk to her or go on abuot her having to fight this shitty disease.
Thanks everyone! After posting just one message on this forum I already feel a bit better about the whole thing. When I found out, I just had to know more information, and I was worried to look on the internet but I couldnt really help myself! Talking to all you people has made me feel more positive.
Hi, Vic - girl, boy, whatever! I think you’re wonderful to be there so much for your mum, and Eddy too.
Good luck to your mum with her treatment. Taxotere can be a bit rough but it IS doable. I had 5 out of 6. If things do get a bit rough, just remind her that the side effects are all temporary and they will clear up after treatment has finished. She may feel quite exhausted and have very little energy, but tell her to listen to her body and just sleep/rest if that’s what she feels like doing.
Eddie thats exactly how I am - I know some of it isnt brilliant reading but I like to know as much as I can. I only found this site about a month ago when we was awaiting test results - and I have found it to be a great help and have lots of messages of support ftoo.
so glad that you are feeling more positive and all the best to your mum
Eddie and Vic,
So sorry to hear about both your mums.
It is wonderful that you are such supportive sons and daughters…my children are aged 30, 26, 25 and I was diagnosed in jan 04,…it has been very tough for them too…but like you they want to know everything and I have always told them…but everyone is different, i’m sure in time Eddie your mum will talk more she probably needs to deal with the secondary diagnosis herself first.
My aunt was diagnosed with breast cancer 18 years ago and diagnosed with bone secondaries about 3 years ago, she has 3wkly infusions of bone strengthener, she doesn’t like to talk about it very much…although she has opened up more over the past year.
