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Hello ladies,

I’m not sure whether it’s the done thing to introduce ones self to the forum - but here goes:

I am 43 years old and have secondaries in my lung & liver. My late Mum had BC twice before bowel cancer finally claimed her, but as a result she had always told me to check myself, which I did regularly each month from the age of 18. She passed away when I was 19.

I was first diagnosed with BC at 31 years old, had a mastectomy and needed no further treatment as I had caught it early. I had just got to the end of the magical 5 year period and had a celebration party, when 3 months later, I found another lump in the other breast. Another mastectomy followed and the only treatment I needed was tamoxifen as again I had caught it early. I considered myself to be very fortunate and got on with my life. Well no not quite, I tried to, but I ended up having a part work/part breast cancer related breakdown and received counselling. Then I got on with life.

After 5 years, I was taken off tamoxifen and discharged by my Consultant as it had been 5 years from my 2nd diagnosis and 10 years from the original. Cue another celebration!

One year and one month later, I woke with severe pains in my chest, went to the A&E Dept, and to cut a long story short, after various tests I was told I had secondary breast cancer in my left lung and liver. I do wonder if being taken off tamoxifen had an affect or not?

I was given approx 18 months, I am now 8 months down the line. I finished FEC chemo in March and my hair, eyebrows and eyelashes have now grown back. :slight_smile: I have now been put back on Tamoxifen. And no further treatment at the moment. Altho’ I’m told they may want to oblate my ovaries at some point. Anyone had this? The other option is to have them removed. Again, anyone had this done? Also been told that I’ll probably have to have chemo again at some point in the future too. Is this usual?

For the main, I am positive, try to be happy and go out as much as I can, but I am very very scared and find myself crying quite a bit. Does anyone else feel like this?

I don’t have any family/partner. But I have 8 friends who I’ve known since I was 3 years old, they are my family, we’ve grown up together and gone thro’ everything together - school, boyfriends, marriages, divorces, kids, etc. I call them my Angels. They are always there for me, they are wonderful, each with their own different personalities and qualities in times of need and happiness are second to none. Because they mean so much to me, and I know I do to them, I find it very difficult to talk to them about my feelings about my illness. I can talk to them about the facts, but not the emotions/feelings I have as I don’t want to upset them.

I need an outlet! I belong to my local support group (for the last 11 years) but there is no-one there who has secondaries. I have a Macmillan Nurse and I attend a Hospice once a week and they have counsellors, but I don’t think they can fully understand my feelings as they haven’t got it. All the training in the world can’t be a subsitute for the real thing. Not that I would wish it on anyone, you get my drift don’t you. I’M REALLY HOPING JOINING THIS FORUM WILL HELP.

Anyway, I’ve rambled on enough, I’m sorry it’s long. I hope by the time this is approved and posted up, that you are all having a lovely day.

Bye for now
x

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Good Morning Pippi
And, yes, you have come to the right place :slight_smile: The club that no one wants to join! I was dx with secondaries in May 08 after a local recurrence (very close to the ‘magic’ 5 years!) and then bone mets were found. I too had FEC and got through that and am now on Arimidex as well as bone strengtheners. As I was (most likely) still peri menopausal after chemo I had my ovaries ablated to make me post menopausal - so that I could take an Aromatase Inhibitor (A I) rather than Tamoxifen that had not done the job for me 1st time round. Please feel free to ask about any of this - ‘ablation’ is a very good diet.
Anyway, back to you. We are a very friendly bunch on here and offer a lot of support, advice, experiences and have a lot of knowledge on different treatments. Although I do not have any real knowledge about lung and liver mets I have learnt form readying other posts on here and there are many ladies who will be along to help you if you questions are specific to your mets. After FEC I was told that I would most likely need chemo again at some point and mets were explained to me as being incurable rather than untreatable - which means they will throw a lot at you if it works. I’m assuming you are hormone receptive as you are on Tam so making you post menopausal also gives them other options with A I drugs. 2 years ago I was in the depths of despair when I have my secondary dx and although I have close family and friends NO-ONE understands unless they are going through it as well and these forums have been a lifeline. Whatever you say or feel on here we all understand, so when we want to rant and rave, or share good news this is the place to come!
I hope this has helped and, as I said, I’m sure there will be other ladies along later in the day - we all seem to have our ‘usual’ times when we log on - but feel free to ask me any other questions. I hope also that you are out of the really ‘dark’ time when you had your secondary dx and are alble to get on with the new life we all find ourselves with.
Take care
Nicky x

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Hi Pippi and welcome to the BCC forums

I am sure you will continue to receive lots of valuable support and shared experiences from your fellow users, in addition i am posting links to some of our secondary support services which you may find helpful:

breastcancercare.org.uk/breast-cancer-breast-health/secondary-breast-cancer/

Our helpliners are also here to offer you further support and information on 0808 800 6000, weekdays 9-5 and Sat 9-2 so do please feel free to call for a ‘listening ear’.

Take care
Lucy

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Hi Pippi, I know you will find lots of support here…you can absolutely count on it…we are a very friendly, supportive and informative bunch and understand the rollercoaster life of living with breast cancer.
I’ve been living with bone mets for seven years and had a good spell with Tamoxifen. I was put into a chemically induced menopause and altogether had 5 years of hormonal treatment before starting my first chemo.
Good Luck and I hope Tamoxifen works well for you. x

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hi pippi,
i hope it helps to know that there are people here who understand what you are going through. I was daignosed with primary bc and lung mets 3 years ago at the age of 37, and continue to have a good life despite all the various treatments. Remember that there are lots of different hormonal treatments as well as chemos to try, and that there are also drug trials, so you still have lots of treatment options. I hope you have also had some help with the practical stuff like applying for DLA.

nicky xx

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Hi Pippi, I’ve responded to you another thread and I’ve just seen your message on here. I’m so sorry that you are having to go through this but as Nicky says, this website is a godsend and you will find loads of help and support on here and make lots of new cyber friends. I couldn’t manage without it. I had a mastectomy 18 years ago, followed by chemo, rads and tamoxifen. I had a run in with bowel cancer 10 years later but a laparotomy seemed to sort that out and I had no further treatment. Then January this year I was dx’d with liver and spine mets. I was devastated as I had been given the impression by my GP that I would only live for about 3 months. The onc said that was ridiculous and although it’s incurable, it’s treatable. What a difference those words made. I felt as if I had some sort of life back. I’ve had 12 weeks of taxotere which unfortunately made little difference to the liver mets. (My onc doesn’t seem to worried about the spine and I’m on daily Bondronat tablets for it) However, I’m apparently very receptive to hormone treatment and I’m now on a daily Arimidex tablet. There are some side effects such as joint pain and hot flushes but otherwise no probs. My liver doesn’t bother me much at all now, so I’m hoping that when I see him in August after a blood test, he’ll be able to say that it’s keeping the cancer at bay.

Your friends sound lovely and it’s marvellous to have such wonderful support. As I said earlier, this website is fantastic and everyone is a great help. Nobody minds if you rant and rave, we all go through bad patches. I do hope that you are feeling well today, Please keep in touch, sending you lots of love and hugs. Dianne x x x

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Hi Pippi

Welcome to the forum, although I wish you didn’t have reason to be here. I have been using these forums since I was first diagnosed with secondaries in Jan 2007. First I had bone mets but in Sept last year I found it had spread to my lungs. As yet I have had no symtoms with the lung mets and have recently started on Capcetebine/Lapatinib to try to keep it under control. You will find a wealth of experience and loads of support on this forum. I too have some great friends but it’s nice to be able to communicate with people who are in the same boat as you and really understand what you are going through. Hope you enjoy these forums and that you are with us for a long time to come.

All the best

Linda
x

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Hello Pippi,

Sorry you have had to join us, but you have come to the right place for support.

I was dx with secondary bone cancer,a couple of months ago,and the help and support I have found on these forums,have kept me sane! I have met some lovely cyber friends, they know exactly what you are going throgh,and you can share evrything on here,and you can be sure of a lot of helpful advice.

You are lucky to have such a close family and friends, but I know what you mean by not being able to share everything with them,it’s impossible for anyone to completely understand what we are going through, that is why these forums are so important.

Take care of yourself, Maryxxx

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Hi Pippi

Sorry you’ve had to join us, but hopefully we can be of some help. Really what I need to say has already been said!

I have only been ‘here’ since April, I was diagnosed with bone mets and a tumour in my chest, after primary treatment in 2007. I have found the help and support on here to be invaluable. Inspirational stories and hearing of others in a similar situation for many years is the main way I have got by and as Nicky said secondaries aren’t curable…but they are treatable. I have read experiences of others and changed my own opinion of my cancer from ‘dying of cancer’ to 'living with cancer’and there is a huge difference.

With regard to introducing yourself…I think that’s a lovely idea, we are a really friendly bunch on here and you will learn lot of personal info about lots of people. However supportive friends are, you do need to be supported by others who do understand. When I was on this forum 3 years ago, there was a more detailed profile page, I wish we still had it, because I forget which ‘friends’ have told me what information.

You said that you are 43, I am a similar age at 44! I too can have my tearful moments we all do, but we also have far more quality moments when we can stick 2 fingers up to this cruel disease and get on with enjoying our lives. I hope that we can support you in doing so too! Where are you living? you might meet somebody on here who lives nearby and can meet up and support you.

Take care and please join us again,

Nicola xx

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Hi Piipi

I am relatively new too. Secondaries diagnosed last October in lungs, liver and bones - the triple whammy! Fortunately I have responded well to my chemo, Carboplatin & Gemcitabine, and had ‘significant reduction’. So now I am like you, on Tamoxifen to see if that keeps things stable…we shall see! I also have Bondronat tablets for my bones to help them heal.

I have found these forums really useful to pick up tips on dealing with chemo side effects and news on treatments etc. As everyone has said, the support of other girls dealing with similar issues is invaluable. I too have a great support network of friends and relatives but only on here can you be truly open about how you feel.

I have always been an optimist but I am also a realist. I know my condition is not curable, but as the others have said, there is a fair chance, with a good wind, that the treatments available both now and in the future will help us to live with this disease for a good few more years yet. I will drink to that!

Best wishes to you

Sue x

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Hi Pippi,

Sorry that you’re here, but welcome. I have bone (June, 09 with prim) and liver (April, 10) mets. I had a really difficulty time leading up to the liver mets dx, without the support of this forum, I certainly don’t know where I would be.

I had Tamoxifen, but it didn’t work for me, so moving on to Zoladex and something else I can’t remember next after the current FEC chemo is finished. My onc doesn’t like the idea of ablation mainly because of my age (in my 20s). Glad Tamoxifen is working well for you.

My onc gave me a long list of chemo options if FEC fails (and of course that if never happened, just got the CT scan result back today and FEC is doing a fantastic job) and said quite confidently that he’s still got a lot up his sleeves. Didn’t really like the idea of having more chemo in the future, but good to know that I’ve still got a lot more options to try. So it’s normal for us secondary ladies to have what seems like endless chemo.

I’m usually quite positive as well and good to know you are the same. Keeping a positive outlook does help. But I do have my moments and sometimes badly! Have found it very very tough a few weeks ago when I was going through my first anniversary since dx, which coincided with a depression triggered by coming off high dose of steroids. Finally decided to bite the bullet and went for some counselling. Started that on Tue and really wish I’ve done that earlier. Like you, I have lots of friends that I can talk to who live close to me. But it’s not really the same and I sometimes worry that I may become a burden to them and like you said “upset them”. So, went for the counselling to get some professional help has really lightened up my outlook.

The forum has been brilliant, having said that. Because you don’t really need to wait and book an appt, there’s always someone here for you!

I’ve written a lot, too. LOL! Just to share a few things and hope that has made you feel that all your feelings are “normal”. Any more ramble? Any time, there will always be a listening ear.

Take care & keep in touch xx

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Hi Pippi,

So sorry you’ve joined us but welcome to the gang and welcome to the forums which I’m sure you’ll find helpful. As the others have said, you can always come along and share the good the bad the tears the laughter, we know where you’re coming from and will try to support you.

I’m quite knew to secondarys myself. Primary bc in 2009, chemo, rads, tamoxifen. Had ovaries removed about 5 years ago when finished tamoxifen, op was fine,done keyhole and only in hospital a couple of days.Dx secondary bones March this year and currently on zometa for bones and also femara as hormone positive. Had some rads but no chemo yet. Are lots of treatments available out there for us and lots of examples on the forums of women living good lives for many years.

We all have our bad days and wobbles but at least we can share that in a safe environment here too. Once the overwhelming awfulness of it all passes, you do start to get on with living with it and these forums and these great women really, really do help, so please do keep coming back.

With love Julie

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Hi everyone - first of all, I’d just like to say a huge THANKYOU for the lovely welcome messages and all the great feedback/information and personal stories/advice/reassurance - I’m quite overwhelmed by the response.

* Nicky: When you say Ablation is a very good diet - could you expand on that pls? Also what are Aromatase Inhibitors?

* Belinda: 7 years - wow - well done you.

* India: Don’t know anything at all about drug trials - how do I find out about these things? Yes, I’m all sorted with DLA - my Macmillan Nurse arranged it.

* Jodie: Have the read the links and found them informative - ta.

* Lucy: My god, you’ve been thro’ it gal. I’m liking this “incurable but treatable” phrase. I am going to start using it. :slight_smile:

* Linda: Do you find it difficult walking and/or have trouble breathing? Are you on MST morphine?

* Mary: It’s hard isn’t it. I do hope so.

* Nicola: I am also liking the “living with cancer” - I’m understanding this much better now.

* Susie: I’ll drink to that too. Hic!

* M1yu: Endless chemo eh? One part of me thinks “oh no” and the other part thinks “that’s good news”

* Julie: When you had your ovaries removed did they give you the option of ablation instead? If so, how did you come to your decision?

Thankyou all once again ladies. I hope you are all doing good today?? I am, went to the cinema to watch Shrek last night with my 11yr old god-son Tom, oh we had a fantastic time having lots of laughs and spending quality time together both watching the film and going for a meal afterwards. He does my heart good. :slight_smile: :slight_smile:

Take care & bless you all
X

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Hello Pippi,

So pleased you are feeling a bit better,it is good to know that if you want to get something of your chest, there is always someone here who will listen.

Lovely that you went out with your little god-son, you can’t be sad around children!!

Take care of yourself lots of love, Maryxxx

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Hiya Mary, that is soooo true, I hadn’t thought about it before until you said that. :slight_smile:

How are you today?
x

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Hello Pippi,

I am feeling quite good today,thank you I am going for my fourth treatment of Zometa,tomorrow as I have bone mets. When I was first dx with secondries,I didn’t think I would ever feel normal again,but you do learn to make a new kind of normal,and you will find that you will be able to cope in time. You have to be gentle with yourself,and take all the help that is offered. I have just read through your original post,and you have had a lot to deal with in the past. I also apologise, I made a comment in one of my posts,that you were lucky to have close family, I realise I read it wrong,so sorry about that,but as you say your friends are your family,it is so good that they are there to support you.We are all here to support you as well, I haven’t any close family, my only brother died,six years ago, and I haven’t any children, I do have a husband,who is very kind and supportive, so I am very lucky!

I do hope you have a restful night,take care,

Lots of love Maryxxx

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Hi Pippi,

Glad you are feeling a little better today and you’ve found the forum useful.

I honestly can’t remember if I was offered ablation, I just went for the op & they removed ovaries and tubes and it was all pretty straight forward,sorry I can’t be of more help.

Glad you had lovely time with Godson. I haven’t got any children myself but have lots of nephews and nieces and I love them! I think it’s better than having kids myself as I get all the fun without the hassle!!!

Hope you have a restful night

Love Julie

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Hi Pippi

Glad you are feeling a bit more reassured now. You asked if I had difficulty walking - I do, but only because I have recently had a hip replacement op and repair to a fractured vertibrae (due to bone mets) so I am on crutches, but it’s nothing to do with my lung mets. I take diclofenac and Solpadol for the bone mets but don’t have any symptoms in my lungs so no difficulty breathing yet - do you? By the way, I’m 48 with 2 children aged 10 and 7. I love Shrek, must go and see the movie too.

I see you are wondering about ovary removal or ablation - I had removal 3 yrs ago, which was just 1 overnight stay in hospital and 3 tiny incisions in my abdomen (one of which was through my navel so invisible). I chose this method because there have been 2 family members who had ovarian cancer and I felt this would be a good precaution for me.

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Hi Pippi,

Glad you find our comments helpful. And good that you’ve enjoyed Shrek. I have to watch that sometime!!

Well, since my dx last June and started on chemo last July, The only chemo break I’ve had lasted just less than 4 months. During that time I was on Tamoxifen and it didn’t work, which resulted in the liver mets dx. So, I’m kind of a bit worried about a chemo break… where else would it spread to?? However, with how much I’m struggling with the side effects on FEC, I’m kind of want and need a break… it’s that fragile balance we all need to find.

Take care xx

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Hi, I guess I am new too, and have drawn great strength from the ladies posting here. I was diagnosed at the beginning of May with primary and secondaries in the bone. I scared myself stupid when I saw the MRI of my pelvis peppered with lots of dots! I am on Femera to shrink my lump and Zometa IV to help my bones. Still early days for me, and I am being left alone for a bit whilst stuff takes effect(fingers crossed) I have developed an ostrich mentality, trying not to overthink my situation and trying to adapt to a new ‘normal’. I am very lucky, with a supportive family and friends. This site is great for calming the nerves and I have stopped thinking that its ‘curtains’ any minute. I am also fortunate that I have no pain as yet.Despite my onc wrenching my hips and jabbing my ribs and saying sweetly’you must feel THAT? or THAT?, how about THAT?’ He must be a sadist. lol. Whathas really got me confused is diet. I actually tried to go vegan for a few days as per a book by a woman called Plant( no really, don’t laugh) but I couldn’t hack it, so have opted for lots of fruit and veg, fish and limited red meat. There is a lot of info about creating an alkaline environment to discourage those pesky cancer cells, as they thrive in an acidic body… lots of refined sugar etc. Anybody got any thoughts on that? Although it has to be said that I am still shifting a respectable amount of chocolate and my obligatory glass of red wine every day!