Newly diagnosed with breast cancer with lung and liver mets

[fudgeincornwal]

I was dx in March 2009 with IBC with liver mets. After chemo scan was clear, had mx then rads, waited a year and had ld flap recon. Stayed on Herceptin ever since. August 2011 scan showed spread to pancreas, spent 6 months on trial with weekly everolimus, herceptin and vinerolbine, stopped after build up of se's. Scan showed lots of shrinkage. Had scan a month ago, growth on pancreas grown again so just about to start another trial. In all this, apart from the first dx when my boob was sore, I have felt fine, the only down side has been some of the side effects of the treatment, I have loads of energy and have a great quality of life, I havn't had a cold/flu since taking Herceptin (a little positive side effect me thinks) I'm always very busy and am out socially a lot for meals (I love food!!!),go to pilate classes and cycle and walk miles, I went to London in March and walked from Greenwich to Central London (my husband was knackered, he reckons Herceptin gives me extra strength!). I'm starting Xleoda tabs which I'm hoping will work and I can stay on for a long time. My onc says I'll be annoying him for many years yet!!! I'm also of to France in September. You do learn to live alongside cancer and I find the more in control I am the better it is, ask questions, make sure appts for clinic and treatment fit in with your life style. I keep a diary and give a print out at every clinic appt. to put in my file so there is always a list of questions of asked etc. I'm quite excited about the chemo tabs, hopefully hardly any side effects and long term use, more and more treatments are becoming available especially in trial form. My onc has also said there are plenty more treatment options up his sleeve!! Remember 'Don't put your life on hold waiting for the storm to pass,just learn to dance in the rain!!' Positive vibes to all xxxxxx

[Guest user]

Just over a year ago I was right where you are now. I walked into clinic expecting one thing and came out with another. Nobody can imagine the shock. You really do need a lot of time to get your head around it all. I had a large primary in the breast and mets in liver and bones. I have multiple liver mets, I don't think they were ever counted and the largest was quite a bit bigger than yours. When I asked the prognosis was 'more than weeks'. I started immediately on 6 cycles of Taxotere with Herceptin. That finished in September and scans showed a moderate response. Since then I have continued on Herceptin and Zometa and remained fairly well. Latest scans showed the liver mets have continued to improve but there has been progression in the breast so I have just started radiotherapy to try to control that. My oncologist assures me there are plenty more treatment options and that he will treat this as a chronic disease. It is a roller coaster of a ride but you will find you are not alone and there are some wonderfully knowledgeable and supportive ladies here who will help you along.

[FurryBoots]

Hi Katherine, I totally understand your shock. I too was diagonised at the start of the year with BC and spread to liver and bones... eight tumors on the liver. It's just so shocking, from feeling/being really well to suddenly being told you're seriously ill. I kept saying "are you sure, but I feel great!". Well, dispite my first three chemos not working, and having just finished the first round of my new chemo I still feel realy well. I'm working and carrying on as normal... what else can you do! I'm not going to spred the rest of my life fearing death, I'm just going to enjoy the life I have, which is a very good one... we're not dying, we're living with cancer. xxx

[sarahlousie]

Oh katherine,
So so sorry for your current dx and predicament I know all too well what it feels like to be hit with a double whammy in the form of primary and secondaries all at the same time (I was dx 2 weeks after primary with multiple lung mets), of course you are worried and scared that is a normal reaction to such terrifying news. A few things to remember the chemo your about to start packs a punch on both mets and primary I also did FEC followed by Taxotere this combo brought the initial primary lump down from a whopping 6.5cm to 2mil!! So first things first remember chemo DOES work, secondly you need to talk coming here you will find plenty of other ladies in a similar position so you can be rest assured that we will all help you out as much as possible if you are finding this is not enough then I would suggest you ring the macmillan help line and this sites help line they have trained councillors ready and waiting to talk to you, is there no one you can share this dx with? Initially I didn't tell everyone but after a while realised that they needed to understand what I was going through and too be honest some have been great some have disappeared, your family will support you through this but they can't help you if you don't tell them. Remember anytime you want to talk, vent, rant or simply ask questions then post on here alternatively if you want you could always send me a personal message and I will get back to you. Are they going to treat you with Herceptin? and whats your plan? ie: surgery, radiotherapy. Sending you lots of love and light
Sarah xx

[elliedog]

I was dx with primary breast cancer in Feb 2013. I had a right breast mx and node clearance. I then had bone scan, ct scan, mri scan as I was entering into trials and it had to be done. I was orginally told that they expected to find nothing even up until the MRI they still thought it was something else. So I was shocked when they delivered the news that they had found a spot on my liver (less 1cm). All the other scans where clear so for now this is all I have to deal with. Part of me is thankful that it has been found so early so treatment started very quickly. I have just had my 2nd treantment of Doxotaxol (chemo), Herceptin with Pertuzumab and so far apart from a few days of feeling like I have flu, a rash (although haven't got 2nd time), taste goes for a few days and feeling very emotional on the second week I am coping. I will be on the Herceptin and Pertuzumab for as long as it works, which I hope will be for a long time. I was very scared when first dx as I felt to young to be in this position (43) with 2 school age children. But I have spoken to many ladies on this forum and they have been so positive. There are many treatments out there and more being developed. I have a lady on my chemo ward that has been taking Herceptin for the past ten years and is still going strong and she isn't the only one. I am learning to cope with all the hospital appointments (having hardly been ill in my life) but with the support of a lovely husband, family and friends and I am getting there. I have made a few changes to my live, I relax when I can instead of constantly rushing, I have gone back to being a vegi, and I don't let silly pointless things bother me anymore. I am told being positive is the way to be (which is hard to do all the time) but when I am in a positive mood I do feel better. I know I have other treatment options out there so I don't intend to let this rule my life (except for when I see the doc and go for scans). Keep in touch with everyone on here as they are so helpful and comforting. If I can help you in any way please post or message me. Angela xx

[Katherine2701]

Thank you so much for your lovely posts. Tonight I have been really tearful, and it is so nice to read such supporting messages. Thank you again.

[belinda]

I too was diagnosed with both breast cancer and secondaries together back in 2003. It took me an awful long time to get used to the idea I was suddenly, officially, very ill. I remember the shock being diagnosed at stage 4 from the very beginning brings. There seems to be a growing number of us being diagnosed this way.
I have had, at times, many years of very little detectable cancer activity and there has been new treatments introduced since my diagnosis. Good Luck to us all with our various treatments..x

[geordiex]

saw my onc yesterday and have had a more than 50% positive response to treatment looking at CT scan ,and thats 2/3 way thru treatment and liver function much improved ,having a week off taxol as side effects getting bad and will decide what to do next week x

[Katherine2701]

Thanks so much everyone for your responses. It does help to think there are people who understand how I am feeling. I'll keep looking on this site for liver mets.
thank you again.

[geordiex]

hi I had primary breast cancer 2009 her2 had mastectomy FAC and a year of herceptin ,nothing in nodes but was vascular.After feeling extra tired and just not right earlier this year had blood tests which showed my ALP was elevated ,I had hoped it was my thyroid but was diagnosed after ultrasound and ct as having secondaries in liver ,I am now on weekly paclitaxel and 3 weekly herceptin blood levels in normal range now,and will find out results of last weeks ct scan soon,liver symptoms seem so vague,in hindsight simple blood tests would alert you to a problem but without knowing the symptoms its not easy .

[lucinda]

Katherine I totally understand the shock of being dx with bc and secondaries at the same time,I was dx in 2009 with bone secondaries ,spread to lymph nodes and a suspected lung met plus liver mets discovered last December.Following fec the lung was actually clear but have been on continuous forms of treatments since then for the bones and now the liver.
You will find many of us on the forum were dx with multiple secondaries from day one,we have all had different treatments and have had many ups and downs as time goes on.You will find that at sometime down the line you will be able to find a normal pattern to your life,all be it planned around treatments and hospital appointments.There are so many new treatments which give us all hope,yes we know we can't be cured but we can be treated and we can carry on with our lives all bve a new kind of life.It is so hard to get your head around when first dx.

Do you have a bc nurse you can ask questions ?Don't try to do this alone there is help out there.Ring the help line on here,try to find a local support group,keep asking questions on this forum(I will look for a lung /liver thread for you).Always remember if you are unsure about your treatment you are always entitled to a second opinion to make things clear.

Hope your chemo is going well and next time you see your onc write down all the questions you want to ask and if possible take someone with you to write down the answers.So sorry you have had to join us but remember we will help all we can.

L xx

[mandy65]

Hi Katherine,
I was dx with breast cancer in 2003 and had treatment ,recon but was dx with seconderies in April this year in my lung When I was dx with seconderies it was a shock and I think what your feeling is normal ,once I got a treatment plan I felt much better this website has been great and reasuring for me as there are so many inspiring stories and treatments are moving on quite fast.I find sometimes its hard to be postive I kept crying alot and telling my family I was sorry all the time but you have to let them in which is quite hard .Sending you big cyberhugs and postive vibes
Mandy xx

[Jo_BCC]

Hi Katherine2701

I'm sorry to hear of your diagnosis. To help you along I have put for you below links to a couple of BCC's publications you might find helpful.

http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-breast-cancer-bcc...

http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-resource-pack-bcc...

You might also like to join in with Secondary Live Chat which runs each Tuesday evening between 8.30 and 9.30 p.m., just follow the link below. The ladies who join live chat give each other some wonderful support.

http://www.breastcancercare.org.uk/community/chat

Take care,

Jo, Facilitator

[Katherine2701]

Hi there,
I've just been diagnosed with breast cancer and at the same time have been diagnosed with lung and liver mets. It has come as a huge shock as you can imagine. The breast cancer news I was expecting but to hear I had secondaries too has left me devastated. The Onc said the lung mets were all less than 10mm in size but were too numerous to mention and that there were around 6/7 in my liver the largest of which is 2.5cm approx. This sounds horrific to me and I'm so frightened but my Onc doesn't talk much so I don't have any idea whether that is standard or desperate! I've just started FEC T chemo regime (2nd just finished) and wondered if there was anyone who had been through the same or similar? I find myself being envious of those just diagnosed with breast cancer without secondaries and feel lie i have missed out which simply isn't right but from having felt fine in April I now find myself facing death and under treatment for a life threatening disease I knew next to nothing about! I know this must sound very sorry for myself and I am really a strong and upbeat person but I've been trying to get through this alone and I find it harder and harder to sleep now with worry and don't want to bother my family who are already going through enough. Is there anyone out there who has been through this or who is going through it that would like to message to share the pain at all?