Back again....moving from primary breast cancer to secondary....blast

Hi all, My name is Sue. In 2008 I had breast cancer, lumpectomy (two inch tumour, but got away with lumpectomy - there’s advantages to being a “big” girl!), lymph node clearance, 4 x FEC and 4 x Taxotere and radiotherapy. Today I found out I have bone metastases and possibly liver mestastases too. I am seeing my oncologist on Monday. This was always in the back of my mind, and I knew the chances were very high, so, so far (5 hours after being told), I’m upset but pragmatic, and cheered by reading of stories on here of women who have managed 10 years with palliative care.
My husband is in complete denial, which isn’t helpful - but hey, it’s been 5 hours. I got a great deal of support and reassurance and actually made good friends from this site during my primary cancer - ironically a group of us are away celebrating 5 years all clear next month to Amsterdam! Oops - booked that too far in advance.
It’s not part of the site we ever wished to use, but here’s to us. I hope I can be of some support to others once again after I know more about my situation. x

Hello Sue, I’m sorry you have to join us. I was stage 4 from the very beginning but it must be a HUGE shock dealing with a primary diagnosis and trying to move foreward while you have the possibilities of secondaries hanging over you. I don’t do anything out of the ordinary diet wise but am one of the ten years plus stage 4 women. Many new treatments have been introduced since my diagnosis in 2003. I take some comfort from this. Be kind to yourself. It takes a while, at least I found it did, for you and your family and friends to adjust to the uncertainty. Some days are easier than others, after ten years I still find this so. But somehow we all seem to find our own way of living with the emphasis very much on living with secondaries. I think it’s true to say most of us are happier when we have a treatment plan and know what’s happening next. So Good Luck with Monday’s Oncologist appointment. You will find lots of support, friendship and a mine of knowledge from others here. Take Care Sue, Belinda…x

Hi Sue I’m sure I remember your login name from 2008 when I joined the forum - albeit with bone mets. I had gone nearly 5 years since primary and the secondary dx came like a bolt out of the blue as I had no symptoms whatsoever. I vividly recall the shock of that dx and how it affected us all, my daughters and husband. I really did think I was a gonna! However, as Belinda says, once a treatment plan is in place it became easier to cope as I felt more in control and the fact that something was being done. As I’d had a local recurrence (the only change so not really a ‘symptom’) I had chemo - 6 x FEC - and then went on to hormone treatment as I was still very ER/PR +ve. This kept me stable for nearly 5 years (again!) when I had some scans done for leg/hip pain to show that my bone mets had worsened and unfortunately it had spread to my liver. So, for me, it was back to the shock again - not quite so much as I’d expected it to go on the move at some point but the fact it’s now in my liver did, of course, worry me. However if you read on here about other stories from ladies with bone and/or liver mets you will see there are a lot of treatments out there - many very new. I am now on Capetcitabine, and oral chemo also known as Xeloda, and bearing up reasonably well except for some slight nausea. I get another scan in a few weeks time to see how I’m doing. For all of the time since secondary dx I’ve also been on a bone strengthening drug, 1st IV, then oral, now the newest one which is an injection - Denosumab. From reading anf learning on here, if you do have liver mets, it may be worth asking for a biopsy to be done to see if your original receptor status has changed. Although this is not a pleasant procedure (I had one done last week and am awaiting results) it can determine if hormone treatment is to be used as well as if you have changed from HER-ve to HER +ve. It’s worth checking out the Bone Mets - Please join in thread as there are lots of inspiring stories, treatment experiences and general knowledge on there and quite a few of the ladies also have liver mets. There’s also a Liver and Bone Mets thread but that it a bit quieter - mainly because most ladies are posting on the other thread.
Good Luck on Monday, hope you come out of your appointment reassured and with a treatment plan in place.
Nicky x

Many thanks to you both for the welcome, and yes Nicky, I remember you too!
I am heartened by the news you have both given me and will post on here after the appointment on Monday. My long term aims prior to reading your posts was to make it as far as the Independence Referendum in September 2014! Good to know I probably have much much longer to do all I want to do.
I appreciate your input, both of you, and your helpful comments.
Love Sue x

Hi Sue from another one who remembers you from many versions back of this forum! Like you I remember celebrating the fact I was about to be given my one year onc clinic appt on achieving 5yrs from first dx. I didnt make it (: But I didn’t then get 2ndary dx - I went thru a few more recurrences/new tumours before that happened. It spread extensively to my bones in 2002 and I hope that I am another who can encourage you to believe you will get to see more than Independence Referendum in September 2014 happen! I know I have had so very much to be thankful that I have lived to celebrate since that diagnosis. Wonderful things like our Ruby wedding anniversary, my 60/65th birthdays, our daughter getting married, the birth of our first grandson, then twins. Of course I would like a lot more years now to watch them growing up, but as I edge ever closer to 70 (69 next birthday) I could be getting a bit greedy. Over most of the 2ndary years I have been kept stable on Herceptin and bisphosphates (currently zometa). My BC is her2+++ hormone neg. Admittedly the last 3-4 years I have had to get used to strong pain meds as pain has become quite a problem but at least from when I was first diagnosed I got to enjoy lots of great holidays exploring the world I hadn’t even began to see. I hope Sue you can take encouragement from us boney girls (the liver girls too) and see that you can have a good few more years, and even a reasonably decent quality of life. Do the things you have always hoped to do and never got round to - and maybe share some of our posts with your other half as well. It hits them hard too. It is still such early days for you both and for some it is very hard to come to terms with. Strangely for myself I found after so many other brushes with bc in the years from 1990-2002 I felt I had adjusted and got used to it being a part of my life with 2ndaries just being a matter of time. When it happened maybe that made it easier to accept but do remember my poor husband being devastated and I think he took strength from seeing me cope with it. We are all different aren’t we :). Being able to share on forums like this does help - I wish they had been around earlier. Do come and find some of us on the bone thread.

Dawn
xx

I would definitely underline what Nicky has suggested about getting a biopsy of your secondaries. I’ve posted a link below, which suggests around 33.4% of cancers change their receptor status over a period of time. As it’s quite a while since your primary diagnosis, you need to know if your cancer is still stimulated by the same thing or something else, so that it can be treated correctly (my cancer went from strongly ER+ to strongly Her2 +).
jco.ascopubs.org/content/early/2012/06/18/JCO.2011.37.2482.abstract
If you have any infected nodes in your chest, it’s a fairly easy and painless procedure, but if you have bone and liver mets, it might be less pleasant (as Nicky say’s).
Good luck with your treatment, and long may you be around.

Hi WestendSue I too am sorry you have had to join us,but welcome.I was dx from day one with secondaries…just went to gp with back pain but did mention pain in the armpit so he sent me to breast clinic.I was shellshocked,mortified and convinced I was a gonner,that was in May 2009.I was dx with exstensive bone mets but apart from pain,controlled by painkillers,I had been stable until last December when I was told there was progression in the bones and also spread to the liver.
I am on one of the new treatments Nicky mentioned everolimus/exestemane combo.I had to apply for funding as it is not yet approved by Nice,there a few ladies on this site on the same treatment and it has had good reports.I had my first scan last Tuesday and get my results next Tuesday,keeping my fingers crossed for good results.

I am sure you will feel better and more positive once you have a trteatment plan in place.

L xx

Hi again Dawn, Hi Lemongrove, Hi Lucinda,
Thank you all for your kind and inspiring words. I saw the oncologist today. The CT scan I had last week was looking for something else and found the metastases just by accident. So I am now to have another scan targetting specifically the areas required and also a bone scan. Depending on the liver results I may have a biopsy, as it turns out I was borderline HER whatever (sorry, brain mince) at the time of the original tumour. We will then be discussing my treatment plan (starting with a portacath - no WAY am I having that fight with my veins ever again!)
I am obviously disappointed this has happened, but not surprised. I remember JaneRA talking about the Nottingham Prognostic Indicator and I worked mine out, checking it with my BCN. According to my NPI it was a slam dunk I was going to get secondaries, although the BCN pooh poohed the index, preferring another means of measuring which put me at 50/50.
The oncologist was very positive herself, saying they are coming to regard women with secondary bone cancer as living with a chronic condition these days thanks to the advances in treatment, which is very much supported by what Dawn has just said, as well as Belinda. Ten years plus - that’s great news. I think I will still do some of the things I want to do with my life sooner rather than later, so there’s lots of holidays on the horizon!
Lucinda, I really hope your scan results next Tuesday (or is that today even?) are good news and you can uncross your fingers for a good long time
Many thanks to you all for the welcome back and for your inspiring stories and useful advice
Sue xxx

Hi Lucinda
hope results are good today, if its this Tuesday that you are going. We all know what scanxiety is like so the sooner the better that the appointment is out of the way.
Good luck
Nicky x

Lucinda (Linda),
I’m thinkiing of you, and saying a little prayer.
Lesley X

Hi Sue and other ladies,
Im also Sue and was originally diagnosed in 2008. Had a localised recurrence in 2010 (mastectomy & recon), now joining you with secondary breast cancer - tumour on liver. I’m starting Taxotere and Herceptin tomorrow and will be introducing pertuzemab once my oncologist gets hold of it as it is not yet licenced here in Ireland and so we will have to pay for it until we can get it through the “system”. By the way, live in Ireland since 2011, lived in Scotland for 25 years but originally from North Wales!
like you Sue would love to hear the encouraging stories from other secondary ladies. Have taken steroids and sleeping tablet so off to bed!
wishing you Sue and all she other lovely ladies many years of successful treatment.
sue xx

Oh and just to say Sue have a fab time in Amsterdam, might not be a trip to celebrate 5years cancer free but sure you will have a blast anyway - a bit of R&R before the treatment. Enjoy! Xxxx

Hi NewSue :wink: (Sue496) Sorry you have to join us in the secondaries section, somewhere none of us want to be. I have had secondary (bone) mets since 2008 and have recently been diagnosed with progression and also mets in the liver. The shock of the secondary diagnosis is one we are all familiar with but, over time we all seem to cope better, especially once a treatment plan is in place. We all still have our ups and downs of course but speaking to ladies on here has really helped lots of us to know we are not alone and can get support and advice from ones in the know! More so than from family members who we maybe don’t want to burden with our fears and worries. Once you know your treatment plan you may want to tap into a thread about that in particular as that gives great info on Side Effects etc be it different chemos, hormones or new combinations of the two. There was a Liver Mets thread a while back but that has gone very quiet recently so it may be easier to post on your particular treatment thread even though ther will be ladies with other types of mets on there - we all understand what it’s like! I still go onto the Bone Mets Thread and there is a Liver and Bone Mets thread as well, all in the Secondaries section. However this is also a good place to keep an eye on as unfortunately there seems to have been a few new ‘members’ to this rotten club over the past month or so there are several of you in similar situations treatment and diagnosis-wise.
Good Luck and do come back to ask any questions you like, one of us is bound to be able to help
Nicky x
ps (oops, I’ve just re-read your post and you do know your plan)