Hello
Received diagnosis a week ago of bone mets. Original bc 5 years ago to the month. Am 42 with an 18 month old daughter who I can’t bear the thought of not being there for. Also concerned about possibility of lung mets as I had pneumonia last November and countless chest/lung infections since then, have lost lots of weight and don’t have much energy. Chest x-rays so far though don’t show anything in the lung.
Not sure what I’m trying to say or even get back. Haven’t cried yet (although my husband and mother-in-law who is staying with us have).
Any ladies out there in anything like similar situation, please tell me about the good times you’ve been having since your diagnosis.
Best wishes.
Alison
Hi Alison
So sorry you have found yourself on here, the club non of us want to be members of.
I have liver mets, but was dx with bc and liver mets all within 10 days of each last July. I am similar age to you, as was 40 in March and have a 4 year old daughter and a 19 month old son.
You will get heaps of support on here from ladies like me who have secondaries, or from people in same sort of boat as you. It is an emotional rollercoaster, but you probably already knowing that having original dx 5 years ago, but having you little daughter in the equation now must make it so much harder for you.
As I said I was dx last July, had chemo from august til November and then been on herceptin since December. My liver mets are stable and still shrinking thankfully. Not had surgery as not an option for me.
Life is good really, dont feel ill and dont look ill (everyone keeps saying how well I look). I have had some really black times since dx, especially when looking at my babies and wondering how much of their life I will see, and I still have my emotional times, normally when feeding my little boy his milk at night time. But I swear that they get me through each day/month etc, and make me smile and laugh even when at my lowest. They make me want to fight every single inch of the way, whatever I can have treatment wise or surgery wise I will, to help fight the b*****d disease and give me as long as poss with my babies.
I carry on as normal too, baby groups, preschool run etc etc and life just carries on as normal, as not really got much choice.
We are here for you Alison, to laugh, cry or just support/help you. Dont be afraid to post your thoughts or troubles.
Take care and let us know how you are.
Love
Dawn
xx
Hi Alison,
These early days of 2ndary diagnosis are so hard to come to terms with. After 5 years you do start to hope - I did. My first dx was 18 years ago (I was 45) and I went 5 years without a recurrence. Since then I have had a few ups and downs and was dx with very extensive bone mets in 2002. I was put on 3-weekly pamidronate (this is one of several bisphosphonate drugs used to control bone mets). A year later they found I was her2+++ so have also been on herceptin since then. It took about 3 treatments of pamidronate before I was able to come off pain meds and since then have been relatively pain free. I do have to be careful what I do of course, but it has been very manageable for me. I can honestly say most of the last 5 years have been pretty good. There are quite a number of us here with bone mets and I am sure they will all be along to tell their stories of hope too.
love, Dawn
Hi Alison
I went 4 years from a primary dx at age 38 before my bone secondaries appeared. Have been on arimidex and bisphosphonates since although think I now have lung mets and am awaiting scan and have chaged my meds. I still work 4 days a week as teacher, swim and ski and look fit and healthy! I have 3 children, 13, 12 and 9 to ensure I don’t feel too sorry for myself and navek gaze too much!
Our idea of normality just changes and we have to enjoy every moment.
Love Rosdubh xxx
Hi Alison,
I would just like to say that you have come (most unfortunately) to the right place and you will find loads of support and women going through the same as you. Though I don’t have bone mets, and my children are different ages, (I am 48 with 6 & 8 yr olds), I was diagnosed at 45 before my daughters 4th birthday. She will be 7 next week. At the time, I didn’t know if I would see her begin school but here we are approaching year 3. Like many others, my life has also been good in the past three years - though if you had told me this would be the case three years ago, I would not have believed you. Once you get used to the diagnosis, and have a plan of action in place, it really does become easier to bear.
I rarely cry now (used to bawl at the drop of a hat) and it was my partner crying when we were told the diagnosis, not me.
Hope you get to enjoy lots of good times…
Jenny
x
Alison
I know how crap it is and what a shock it is …after 4 1 /2 years I was diagnosed with liver mets and bones mets. Part of me still can’t believe it, as once i got through 3 years I really began to hope, then you also meet women on here who didnt even get that, so in one way we were lucky…it just doesnt feel like that.
I am writing this from work, I work full time in a demanding job, look after my son and travel for business and pleasure. Can honestly say that chemo wasnt that bad and Arimidex plus zometa are holding the line at the moment. Its damn hard with my son, I still have my down days where everything is difficult but I have had some great times with my family and have organised my financial affairs as much as possible. So things are good, just totally different from what they were.
We have had some meet ups on this site that have been really helpful and maybe you might like to comme to one.
As Dawn said we are here and this forum is really helpful,
love
cathy
The good thing about this site is you don’t feel so alone-I know I did when I was diagnosed last April with lung mets. My little boy has just turned 4, and like the other mums have said, he keeps me sane. After getting over the initial shock, the last year has been good in lots of ways. This month we went to France, and did loads of cycling, so I feel well, carry on with my job, and enjoy life. Sometimes I do feel down, and this forum is a lifeline, so please keep posting if you feel it helps.
love Nicky
Hi Alison
Sorry you have to be here but as Jenny said you’ve come to the right place. I was dx with bone mets in April this year after a ‘new’ lump was found on my original lumpectomy scar. I was due to have a mastectomy but CT and bone scans before the op showed up an area on my hip that I was totally unaware of and a possible site on my spine. I am in the middle of 6 lots of chemo as it had spread via my blood so I’m using this to give me a good zap before I move onto hormone therapy. I’m also having pamidronate with my chemo (every 3 wks) and will move to every 4 wks when I stop chemo.
This site really has been my saviour. I was 4 and a half years post original bc and doing so well that my onc had said she didn’t need to see me this summer for my last appt. Unfortunately, as I told her, she’s now stuck with me! The site gave me great hope as there are many ladies out there with either the same secondaries as me or more spread who are doing brilliantly. They are a great source of support and advice about what to expect or what to ask. 6 months ago I didn’t know a biphosphonate existed - just wish it had stayed that way! After the initial shock both my hubby and I just got on with it and once the treatment plan was sorted it definitely helped and I think we calmed down a bit after that.
We carry on as normally as possible with the exception of 5 days or so after chemo when I feel grot. We go to the pub, meet friends,go for walks and basically ‘seize the day’. I still work part time on my good days but once chemo is over I intend to go back more hours and again carry on pretty much as normal. There are times when it is very upsetting when your mind wanders about what may happen but there are so many developments in this awful medical ‘experience’ that we have to hope that we can find help in as many as possible. In fact my onc says it should be viewed as an incurable disease as symptoms can be held in check for years. Obviously everyone is different and I don’t want to upset anyone who has a different view.
Believe me, even after this short time since my dx I still laugh a lot (mainly from comments on here!) and don’t think about the dreaded bc all the time - something it took me at least a year to do after my original dx.
Feel free to ask any questions, there’s a whole great gang of fantastic ladies out here with more experience than you can raise a glass of wine to!
Take care
Nicky x
I’m so sorry you have to join us Alison but we are a supportive bunch, do keep in touch. I was diagnosed in my 40’s, in 2003, my hip fractured and I received bc and bone mets diagnosis at the same time. My new hip is great and I’m still very active and pretty much pain free…I take, need, no painkillers. With Love…xx
Hi Alison
Welcome to the forums, I’m sorry to read of your recent secondary diagnosis. I’m sure the other forum members will continue to offer support and share their experiences with you. You may also like to know about some of the other support services from Breast Cancer Care for secondary breast cancer. There is a telephone support group, the aim of the group is to give you the opportunity to talk privately and confidentially to other people around the UK with similar experiences. Discussions cover issues such as relationships, work, money, living with uncertainty, treatment, as well as everyday life, for more information click on the link:
breastcancercare.org.uk/content.php?page_id=11306
There is also a secondary live chat, this Breast Cancer Care’s online chat facility where you can talk to others in real time, it’s from 8.30 pm - 9.30 pm on Tuesdays. It is facilitated by an expert moderator and a nurse who are on hand to point you to sources of help and information, for most people, the chance to talk to others in a similar situation is what counts, again for more information click the link:
breastcancercare.org.uk/content.php?page_id=6218
The following link will take you to Breast Cancer Care’s publications about secondary breast cancer, including one specifically about bone secondaries which you may find useful to read, there is also a DVD called ‘Living with secondary breast cancer’ which has been recently introduced, you can order these via this link or by contacting our helpline on 0808 800 6000:
breastcancercare.org.uk/content.php?page_id=5258
I hope this is of some help to you Alison
Best wishes
Lucy
I’ve only just found this forum wish i’d found it a year ago. 1 year almost to the day i found out i had breast cancer now i find out i have secondary breast cancer of the bone and waiting to find out if it has gone anywhere else. Tomorrow I’m due to have a hickman line and i really don’t want it. I’d rather have the alternative and i can’t even remember what it’s called. I’m 44 and have an eight year old daughter who is my little angel. i didn’t think i’d be in this situation just yet.
i’m not happy at the moment with the after care that i’ve received at all. Perhaps i was being neive but i thought that after taking 5 months in the first instance to be diagnosed with inflammatory breast cancer that had already gone into the lymph glands, that i would have been monitored. As I’m HER2 receptive I’ve been on Herceptin since Dec 07.
Hi Rose - there is an incredibly supportive US site for inflammatory breast cancer…just google ibc support and you will find it as we are not allowed to post URL’s. Most of the posters are American, and they do have the latest info on meds and treatment, some are now 10 yrs+ from dx of this dreadful form of bc and will give you inspiration, help and support.
Hugs,
Liz.
Thanks everyone for all your support. No doubt I shall drop into the forums from time to time now. Never needed it first time around, but this time it’s different.
Best wishes to all.
Alison