New member of the group no-one wants to join....

Having had two primary bc diagnoses (1988 & 2001), and having suffered various symptoms for the past 5 months and struggled to get explanations I received the devastating news a couple of weeks ago that my bc has reappeared and spread to the pelvis, liver and omentum.

I am coping very badly with this: whenever I have to talk to anyone (medics/work etc) about this I find myself crying. My prognosis is, according to the onc, PROBABLY years rather than months. I realise that I am older than many here, and know I should be grateful that I have had 21 years since my first breast cancer. At least I managed to see my son grow up - he takes his final university exam tomorrow: I was told of my first dx three days after his birth, and thought I’d never live to see him to go primary school even.

The receptor status for my 1988 bc was unknown (didn’t test for that then), my 2001 primary bc was ER-/PR-/HR-.

Weirdly, though, the metastases are ER+/PR+. If this is a spread from the first bc, isn’t 21 years a very long time? And if not, has anyone else had their receptor status change?

Thanks for any responses,

DaviesUK

Hi, I just wanted to reply to say that it is very normal to cry at every single person that mentions it but it does get easier! I found out at Easter this year that I had bc with spread to liver all at once! I was in complete bits but slowly over time I have managed to feel better in myself. Dont get me wrong I still have melt down moments but they are getting few and far between.
Also once you start treatment this seems to help alot, do you know what treatment they are starting you on?
I have had two rounds of taxotere and herceptin with good results so far - fingers crossed.
I have also heard that if you have had bc and it does come back it can come back completely different like yours. ER and PR + is good it will hopefully mean you can have herceptin and other hormone treatments. If you where negative these would not be an option.
It is an awful shock to begin with but you will get stronger. Thinking of you xx

Hi Davies,
welcome but I am sorry you have to join us, we are a very nice group and we will try to help you come to terms with your secondary diagnosis.
I also have liver, bones and omentum spread. I was diagnosed with primary 1999 and secs in 2004 the status of my disease changed from er+ to er-. I had 6mths fec 18mths free of chemo 2 years capecitabine last Feb 12 taxol and this year 15 taxol. At the moment I am having a chemo break. Still have pamidronate for my bones and avastin for liver and omentum.
The shock is awful we do find a way to carry on but it is not easy. I hope we can help and support you if you have a question just ask.
Love Debsxxx

Hi Davies,

Sorry to hear this, and yes i believe your reaction is quite understandable. I have had secondaries to the bones for approx a couple of years now, and i can still easily be reduced to tears by someone catching me off guard, or asking me how my children are coping with it (that’s a killer!) So please don’t be hard on yourself, this is bloody awful.

Having said that, all is not by any means lost. I certainly do not regard myself as dying. Many of us are ‘managing’ this disease sometimes we are more successful than at other times.

At the time of my primary diagnosis I was ER+ and PR+ during my secondary diagnosis this changed to ER- PR-. I am HER2 +++ which means I can be treated by herceptin, for me this is a big lifeline. If you are HER2 - however, herceptin would not be applied.

What ever your status, it sounds like your onc will have a full toolbox to treat you with. Don’t despair, this is a very scary time, but it is by no means the end. It doesn’t sound like you are coping badly at all, just reaction very normally.

Take care

Hi Davies
I’ll agree with all the lovely ladies who’ve responded so far - it is such a shock and it’s not surprising you feel as you do. I think one of the BC messages that doesn’t seem to come across with any campaign is that BC can come back at any time, which is why it is a shock when it does. I have bone mets and was in the same position as you last year but I did feel I could cope more once I knew what the treatment plan was. Again, I had chemo last year and am now on hormone treatment as I am highly hormone receptive but not HER2. I’m having bone strengtheners for my bones as well and luckily all seems to be stable. I hope you get your treatment sorted quickly and that it helps you come to terms with your dx. Unfortunately we can’t turn back the clock (oh, how I wish!) but we all seem to move forward and cope and most of us seem to be getting on with things pretty well so I hope that happens to you. Do come back and ask any questions or just join in the silly posts we have on here sometimes, the support is great knowing you’re not the only one out there.
Take care
Nicky x

Hi Davies

So sorry that you have had to join the club that no one wants to join. I was diagnosed with bc and spread to liver at same time back in July 07, and thought that my time was up and I would not see my children start school. It is now 2 years on nearly and I am “stable”. My little girl is now finishing Reception year this July and my little boy starting preschool, so I have achieved that.

I have major melt down moments some worse than others, but on the whole I do OK. I think once my treatment started and I responded well I coped better. I always think about what if and when, but have to continue day to day life for my kids, so they keep me going.

Hope your treatment goes well. I am currently on Herceptine alone right now, but know probably one day I will return to chemo.

Take care and ask any questions you like. The ladies on the forums are wonderful.

Love
Dawn
xx

Davies,

So sorry you are in the ‘club’ with us here, its an awful shock and its early days yet. And yes you will cry its perfectly normal. I spent the first two weeks in floods of tears and still have times like that. Its not easy. I was diagnosed in Nov 07 with liver and bone mets, and like you (although I can see from what you write you had a harder time) it seems to me that medics didn’t really put 2 and 2 together until my tumor markers shot up.

This has got to be quick as my computer is about to run out of charge, there are are lots of supportive and helpful people here, so please come on at any time and we are all here to talk, rant, and anything else anyone needs,

Cathyxx

Hi DaviesUK

Think everyone else has said it really but wanted to send you a big cyber hug - you are not alone. It is such a shock when you get that news and I think as Dawn says, for me it wasnt until I started treatment that I began to feel a bit more under control. I was diagnosed with liver mets 2 years ago and saw my son (middle child) graduate a couple of months later.

Do you know yet what your treatment will be? THere are lots of very knowledgeable people in this forum who will be able to help if you have any questions.

I don’t know about the status change. My status has remained the same but I believe there are others whose status did change on secondary dx. I also think that though unusual, there have been people with secondary spread a very very long time after primary dx. The fact that it is hormonally positive though should hopefully give you more treatment options.

Take care. Kay x

Thanks to everyone for your thoughtful and kind comments. I hope to be getting information about my treatment schedule early next week. I will be on Taxotere x 6 to start off with, and I hope to be fitted with a portacath as my veins are terrible.

Does anyone know what happens when the fit the port? The nurse at Maidstone said she believed it would be done under local anasthetic, but wasn’t sure because the procedure is done not in Maidstone but Canterbury.

One of my (many!) problems is being so pathetic about anything medical: I’m terrified of the chemo canulation (horrid, horrid experience) but also terrified of having the port inserted.

DaviesUK

Hi Davies, I’e actually just had a portacath fitted, under general anaesthetic - I didn’t know it could be done under local. My veins lso have been terrible. When it works it’s great but i have been having trouble with the hospital using the right gripper - mine is very long apparently 1 3/4" so finding one that long has been a problem. They are now ordering some in especially for me. Apart from that it’s great - no more nasty canulation!

Hi Davies - sorry to hear you have joined us here - I have lymph, liver and bones diagnosed sept 08… still find it hard some days but generally getting along - give yourself some time to absorb this S**t news . I had a porocath fitted amidst diagnosis and start of treatment and at the time didn’t treatment and it was the best thing - no bother at treatment re veins - procedure straight forward and it has no downside - you can bath, shower , swim - no fishing for veins - go for it. Meanwhile wishing you well, take care , jayne x

Hi Davies, sorry you have had this rubbish news. It is a hard thing to get your head around. I felt I was going to die imminently when I got the news of my secondaries but I am still here two years later and have a good quality of life.

I had a port fitted under a general. But I previously had a line fitted under a local. In fact, it was some sort of sedative that didn’t put me out, but which relaxed me so much I didn’t remember anything about the op. I guess it must be a bit like rohipnol!

I initially had six taxotere. It’s hard, but doable and it had good results for me. I’m now on xeloda because I had further spread at the beginning of this year.

Hoping you too get good results on taxotere.

Deirdre

Hi Davies UK

My port was fitted under a local anaesthetic - they give you masses of sedative and I just sort of floated through the experience. Was a bit sore for a couple of days but they used it for chemo almost immediately. Wouldn’t be without it now as it saves so much stress when they hunt for a vein.

K x

Celeste says (re the portacath) “i have been having trouble with the hospital using the right gripper - mine is very long apparently 1 3/4” so finding one that long has been a problem"

Sorry to be dense… what is a gripper?

Thanks,

DaviesUK

Its the needle that goes into the portacath, if it isn’t long enough it won’t come out the other end and hit the blood stream.

Hi - hope you don’t mind me joining this thread.
To Davies UK - sorry to hear your BC has spread. I was DX with primary in 1997 and secondary in 2004 It has spread to my ovary and pelvic area and they can’t operate. Seems to be quite unusual that it has spread to ovary. I have had 3 lots of Taxotere x 6 along with Xeloda. Just finished the Taxotere but still on Xeloda. the treatment is very successful in reducing tumour and getting rid of fluid build up but I know that once treatment has stopped it will grow again. Also been on Faslodex inbetween the chemo. It’s horrible to think that this will be my life from now on - i’m 59 but my quality of life is not too bad. Just try and think about good things and stay as positive as you can. Hope your treatment goes OK and you are able to cope with things