Hi,
I used these forums back in 2005 when I first had bc at the age of 37, 7.5 years later it has returned, was so sure I had put it all behind me.
I’m in shock, havent told my children yet, just dont know what to say. All I can think of is morbid thoughts, end of life etc, its all just so sad.
Jo
Hi Jo,
Please do give the BCC Helpline a call if it would help to talk to someone in confidence. It reopens on Monday morning at 9am tel. 0808 800 6000. I’m sure other forum users will be along soon to offer support.
With best wishes,
Anna, BCC Facilitator
Hi Jo,
I am so sorry to hear your news and can understand how shocked & dismayed you are feeling. I was almost 11 years from primary dx when I got my secondary dx in 2010, so I understand how you feel, I’d just allowed myself to believe I’d beaten it when wham,there it was back!
You didn’t say where your mets are, mine are bones. Initially I thought that was the end for me but over 2 years on and I’m holding stable. You will come accross many more women living ‘normal’ lives so try to take some hope and comfort.
As to what to say to your children, that’s a tough one, how old are they? What I did with my family was to tell them that I had secondary cancer which meant that I was incurable BUT that I could have treatment which would hopefully keep me stable for as long as possible, so incurable but treatable - sounds a little less frightening I found.
I wish you well especially at the start of this journey when everything is confusing and frightening, I found once I got a treatment plan I began to feel a bit better, Do use the forums (even though they are not working well at the moment!) you will get support from others in a similar position.
Julie x
Hi jo. I’m 38 with a young daughter of 5 and have secondaries too in liver and skin mets too. It’s so hard to know what to say to people around you, like the other Julie I have said the same thing that it was incurable and I would need a lot of treatment. I got diagnosed initially in oct 2010 and then again this march. Life is so unfair. All the best to you xxx
Hi, thanks for taking the time to respond to my post. My boys are 15 and 16. All I know so far is that I had a pain in my sternum for the last 6 months, which would come and go, I went to my doctor a couple of months ago and they sent me for a chest xray which came back clear and the pain got better, then it came back again so I went back to my docs who then referred me to my oncologist, had a ct scan and so far all I know is that it is in the soft tissue and bone in my sternum, I have an appointment with my oncologist on monday to discuss options.
I’m not worried about treatment, have done that before and coped so will again I suppose, its just the utter crushing devastation that I will now have to live the rest of my life with cancer and feel so helpless and sad for my family.
Jo
Hi Jo
Sorry to hear your bad news but you have come to the right place for support as all us secondary ladies know exactly how you are feeling right now. The forum is a bit topsy turvy at the moment since it’s ‘upgrade’ but if you persist you will find a way of using it that gets you the support you need. I had my primary BC back in 2003, then had four and a half ‘good’ years where I thought I’d beaten it, before being diagnosed with bone mets in 2008. My daughters were 17 and 19 at the time and were absolutely devasted - as we all were. However I found this site, which was such a lifeline, and also felt better able to cope once I had a treatment plan in place - a lot of us have found this happens, so hopefully once you have seen your onc on Monday you will know more info and the way forward. Since going through chemo, which was do-able, I have been on bone strengthers and hormone tablets. Obviously these remind you about your BC but they are now just the new normal for me and I think of my pills as my life savers, which they are. I get on with life pretty much as I did before my secondary dx and do have to remind myself I have it some days, so it certainly doesnt rule my life, it’s just part of it. There are many ladies on here living with secondary BC for many years and they really have inspired me since my dx. Please feel free to ask me, or any one else, as many questions as you want, we have a lot of experience and knowledge between us.
Nicky x
Hi Jo
I also had skin mets diagnosed in the last few weeks which had developed a few weeks after finishing chemo and while on rads to shrink primary bc before surgery. I’m currently on Capicetabine (Xeloda) which seems to have stabilised the rate of growth so far but only part way through 2nd cycle. I’ve been told my onc has had patients on this chemo for years and if you are ER+ or HER2+ there are a range of other treatments as well as various chemos you can try.
Juls1974 - I’ve been trying to get some useful info on treatment for skin mets. I started a thread under Treatments and Medical Issues but haven’t had any replies. Have you had any success in treating them yet?
Hello Jo,
I’m so sorry to hear that your cancer is back. I was also diagnosed with spread to my sternum almost 6 years ago now, 3 1/2 years after my initial diagnosis. I was treated with rads, then had an oopherectomy (I was 35 and ER+), so that I could start taking Arimidex. This combination of treatment got me to NED quite quickly and kept me there for almost 5 years. I hope that your treatment path will be every bit as successful; tough on the cancer but gentle on you. Feel free to PM me if I can help at all. Good luck with your appt. tomorrow. xx
Hi Gail5
Sorry to hear you haven’t had any replies to your question on another thread. Could I suggest you give the helpline team here a ring they may be able to help you. Also have you tried using our Secondary Live Chat service? It runs each Tuesday evening between 8.30pm and 9.30pm and is run by one of our facilitators and a breast care nurse. Just follow the links to live chat where there are instructions on how to join in.
Take care,
Jo, Facilitator
Hi Jo. sorry to see you have came back to the site.
I was dx with breast cancer 2006 and had surgery, chemo and rads. Despite being grade 3 and stage 3 my onc believed that I was cured. So one check up a year.
I had back pain and was signed of work, x ray was clear, unfortunatly the pain got worst and so did my mobility.
End of May had a cat scan - yes the beast was back.
I’ve had loads of information and support here - and hope you do too.
Best wishes
Glo
Hello I am new to the site.
First had Thyroidcancer in 2000,year later Breast cancer(primary)mastectomy followed by Chemotherapy.
Had many aches and pains over the years!but for a while now have managed to put BC to the back of my mind.
Have had a lot of pain in my hip for the past few months and had a bone scan just over a week ago.
The scan showed an uptake on my rib and am waiting for a C.T scan.
Feeling so scared and wondering how long I have got.
I work in a Hospice which is not the best place to be when this is going on!!
Love my job but feels a bit close to home at the moment.
Anyone with Bone mets I would really appreciate your advice.
Many Thanks.
Hi Jo,
So sorry you have had to join us on the secondaries forum. I was also diagnosed and rediagnosed (with bone mets) at the same age as you, back in 2009. It is really tough at first and I imagine that having children makes things even harder but hopefully as others have said once you have a treatment plan and get started you’ll start to adjust and hopefully find yourself gradually feeling better. I found it really helpful to talk to someone who wasn’t emotionally involved during this time - a psychologist in my case, but everyone has different things that help them. The BCC helpline have been pretty helpful too.
I hope your appointment goes well tomorrow and as the others have said above please feel free to ask us if you have any questions.
Best wishes,
Tournesol x
Hi Sammysailor,
I’m sorry you are going through this worrying time. Bone scans can show other things as well as bone mets and you are doing the right thing getting it checked by CT scan as this should enable you to find out what you are dealing with. I hope you don’t have to wait too long for the scan and results and manage to distract yourself in the meantime (I can understand that your type of work probably makes that more difficult). If it is bone mets they can be treatable for a long time - there are some ladies here who have had them for a good few years.
All the best,
Tournesol x
hi sammysailor
So sorry you have had to join us, but you have come to the right place for support.I was dx in 2009 with exstensive spine mets,ribs,hip and femur.I have had pain in my right hip and pain down my leg for almost a year now.i had bone scan,mri,ct and they could find nothing wrong so it has now been decided it is wear and tear,arthritis and sciatica.Odd thing is I do have mets in the other hip but no pain.
I had a lot of pain when first dx but a blast of rads really helped with that.I now am on hormone therapy,have a monthly infusion of bone strengthner and take painkillers as and when I need them,but less these days.All my latest scans show all bone mets to be stable.
I know it is hard when first dx not to have morbid thoughts, but 3 years on i manage to leave a normal life(just interupted by treatments) and just take my daily little miracle pills. I know my condition is uncurable but it is not untreatable.It has taken me a while to get to this state of mind and have needed help along the way.I have my down days but then remind myself there are things I have to look forward to.
Is there no-one at the hospice to talk to? i actually asked to be referred to my local hospice for therapy treatments, but was turned down as I was considered too well.It must be difficult for you with a constant reminder around you but i am sure once you get a treatment plan you will feel more positive.If you go ont the bone mets tread you will find ladies who have had bone mets for many years.
L xx
JoJo and Sammysailor, just want to say how very sorry I am that you have had this awful news. You will find some people on this site who have been living with secondary BC for many years - so it is possible. That is not to say you will not wake at night feeling desperately sad, angry and terrified, but for me the fact others have defied the odds gives something to hold onto. This site cannot take the cancer away, but it can offer a chance to talk about things others might not understand, and can provide invaluable information.
Tournesol,Lemongrove,
Thankyou so much for your kind words.
I am at work at the moment so will keep it short and sweet!
Lucinda,
Thankyou for your words,they are so encouraging.
I know as soon as I have a plan that I will feel much better.
Have never been on a forum like this before and cant believe how lovely it is to speak to people who are going through or have been through this before.
Big thanks to you all
xx
Hi Sammysailor, I’m glad you have found us, I will ‘bump’ up the bone mets thread so you can have a look at that for some inspiration, there are many of us on there living well with bone mets. I can imagine that your place of work doesnt help your mind set but one thing to remember is everyone’s current state with cancer is different and it doesnt mean that the same thing will happen to you. There are many treatment options available, some not so intrusive and good responses to them are had. My treatment doesnt involve any hospital visits - just tablets taken at home, although I did have chemo to begin with - so I am able to carry on pretty much as normal before my seconday dx. I am lucky enough not to have any pain from my bone mets (hip and spine), which have remained stable now for over 4 years, so it also doesnt automatically mean that painkillers are used by all of us. I hope you get your treatment plan sorted soon, I am sure it will help with coming to terms with your diagnosis however it is early days and the anger, sadness and ‘why me’ will be there for a while. We do all understand what it is like so do come back and have a moan, or ask a question or just keep in touch.
Nicky x
Hi jojo
Sorry to hear you have secondaries. I had my primary tumour in 2000. Was very confident I’d put it behind me when it reared its ugly head again in 2009 and then again in Feb this year.
Thinking of you.
chrisp1e xx
Hello all,
Having C.T scan on Thursday but I am allergic to the contrast.
Does anyone know if the scan is as reliable without it?
Thanks!
Nicky,
Thanks a lot for your reply,
I’m sure I will be on here having a moan!
Glad you are doing okay and not too much pain.
Take care x