I have just been informed by my onc that through an MRI scan they found a pea size spot on my liver. This was unexpected as I was only dx in feb with BC followed by a right breast mx and node clearance. I was entering into trials hence the MRI. The consultant was also shocked. The plan so far is chemo, a drug they have to get funding for, rads, long term herceptin. As you can imagine I feel devastated. I have children 9 and 14 and cant imagine leaving them. My OH keeps saying I shouldnt think that way as there are many treatments out there and he expects me to be around for a long time. But I know the reality is that there are know certainties and I need to come to terms with this some how.I am so scared but am trying to keep a brave face for the sake of those around me. I keep being told that this is not curable but is treatable like a chronic deseace, I dont know what to think. I have read so much on this site and can see all the positive stories and just hope I will be the same. Oh they also said they might operate if they can excess the area after chemo but I dont think that will happen. Can any help with any words of wisdom.
Angela xxx
Hi Angela
I’m sorry to read of your recent diagnosis and that you are having a pretty tough time at the moment. I’m sure the users of this site will be along to support you soon.
In the meantime I have put here the link to the page with details of the secondary support services and information which you might find useful to look at:-
Also sometimes it can be helpful to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
Best wishes Sam, BCC Facilitator
Hi Angela
I don’t know if you used these forums during your primary treatment, but this is a good place to go for support - almost certainly you’ll find someone who has been in a similar situation, so we can understand something of what you’re going through.
I hope it will encourage you to know that I was dx with multiple liver mets (I’ve never dared to ask how many) in 2009, and to my surprise I still have good quality of life today. My BCN said that they can get good control of liver secondaries if they find the right treatment… big IF… I have had several chemos and hormonals (Herceptin is not for me) and there are newer options and clinical trials becoming available.
And probably a good idea to try the BCC helpline soon… or as it’s the weekend, there are threads in the Secondaries section about liver mets, you could have a look at these.
Thanks mrsblue
<address>Hopefully I will take to the Herceptin and keep it under control. The nurse at the hospital said she has a lady that takes Herceptin and has done for the past ten years she was my age when she was dx (43) and still has a good quality of life. So I know I will have my ups and downs but at this minute I am feeling healthy, I have no symptons so I intend to enjoy that and my family for as long as possible.I know I wont be an old lady but as long as I can see my boys into adults that will do for me anything else will be a bonus. Could I ask one question I will be starting chemo very soon with SE of loosing hair etc is there other types of chemo that dont involve loosing hair nails etc. Im not quite up to speed with the different types of chemo yet but I guess I may have to revisit chemo at some point. I would just like to say what a help all the ladies on this site have been to me over the past few days. I have read my way through most of the threads now and I can honestly say that you have turned my head from thinking I was going to die tommorrow to thinking I can fight this and I will fight this. Thank you everyone and thank you mrsblue for resonding my post. Iam now of to take the boys to their rugby presentation ( rugby mad family) so hopefully give myself rest from this panic feeling that keeps creeping up on me hope it gets easier with time.</address>
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Dear Angela,
So sorry to hear of your recent DX. It might be a tough fight for you, but hopefully you will continue to have a good quality of life for many years to come. Wishing you luck, strength, and much love.
Poemsgalore xxx
Hi Angela,
I am sorry to hear about your diagnosis. I was diagnosed with mets in bones and liver in 2008 age 42 years old although I have now been told that what showed up in liver is probably not cancer. I am HER 2 and ER positive. I am now 47 years old. I have been on herceptin since 2008 and touch wood over the last 4.5 years I have not had any progression. Nearly 5 years on from my diagnosis there are now lot more drugs for us HER 2 women, i.e. perjeta, lapatinib and TDM 1. These new drugs are all targetted therpies and as a consequence do less damage to healthy cells hence quality of life can be maintained during long term treatment. The new drugs will also have a positive impact on the prognosis of women who are diagnosed with secondary BC that is HER 2. I still work full time and do all the things that I used to do.
Receiving the news that you have secondary breast cancer is devastating for the person concerned and their family. My experience is that once you have a proper treatment plan in place you will be begin to feel a bit less anxious. I found that as time goes on I have relatively few bad day’s and am better able to cope with the uncertainty that a secondary diagnosis brings. This forum has been helpful to me as I have learnt a lot about cancer, side effects from treatments etc. I also attend a support group for woment who have been diagnosed with secondary BC.
Alex
Diagnosed with liver and bone mets last year. 5 months after my 1st all clear ( yearly appointment). I was 40years old at the time of the secondaries… I think my shock was even greater than the initial cancer diagnosis…I feel for you. However, you are lucky that you were in the trial and found it early! I know sounds stupid but it’s true! Don’t give up. Many therapeutical options out there. Keep fighting!
Big hugs
Valia
x
Sorry you have had such worrying news Angela. I think you sound remarkably brave, and sending {{{cyberhugs}}} your way!
Thanks Poemsgalore Alex and Valia
I am sort of getting my head around the fact that I was lucky that it has been found early which will hopefully give the chemo and other drugs a better chance of blasting it and keeping it at bay. I am also taking inspiration from people that seem to quote years rather than months of near normal healthy life. Being HER2 + also makes me think that there are plenty of other options out there and hopefully as time goes on more options will appear for us all. I intend to be around for many years yet and believe that it was found early so that can happen. Chemo however is starting to scare me a little as this will be my first time.I have been reading various threads about ladiies that have had their overies removed or their other breast removed as a prevention. Is there any benifit in this not sure weather to ask my usual onc (when he is back of holiday) if this would or could be done. Would appreciate your opinion. One last question the onc that delivered the news to me about the pea size on my liver had not seen my results and was reading them of a report ( all previous scan indicatied it has a hemangiomas not cancer). My usual onc always made a point of looking at the results himself he also believed it was hemangiomas. I suppose what I am saying is that although he said the pea size had shone like cancer I found him to be vague and very matter of fact almostas if he was just filling in for my onc and it didnt really matter. I feel you have to trust your doctor and I have to say I didnt feel I did trust him. He said the scans showing no other signs of cancer anywhere else but if I dont trust him should I ask my usual onc to check this? I suppose I just want to make sure I get the correct treatment because I have no symptoms I have no idea if it could be anywhere else.Anyway I am rambling now so I will leave you ladies in peace. Thanks again for your posts its good to know someone is listening to me out there,
Angela xxx
I believe ovaries are only implicated if your cancer is hormone positive, and I can’t remember your pathology.
Did the onc actually say the nodule was definitely a metastasis? Do you have a copy of your report? It sounds like you haven’t yet had your treatment mapped out for you? so maybe you will have the chance to have a proper discussion with your usual oncologist.
It’s my belief they normally examine and report on everywhere that looks like there is anything suspicious on the CT, ie brain, lungs, liver, kidneys, spinal column. If you get a copy you can read it for yourself, and go over the details with your oncologist.
I think if its a question of ovaries or unaffected breast being removed this is normally done after all the other active treatments are completed.
Hi Morwenna
Thanks for posting me again. I was due to start my treatment tomorrow and I am still keeping that appointment but am unsure what they are going to do ie discuss treatment further, pre assessment or even start the chemo so I am prepared for all three. The onc said that the MRI had showed a spot the size of pea that shone like cancer so when I asked if that was secondaries he said that it was. The nurse said that they were shocked when they read it that morning from the report sent back from the scan. The onc didnt even know that I was HER2 + he had to check. He said that I would continue with the chemo but I would also recieve a drug that they had to apply for funding for but I couldnt begin the chemo until they had the funding because part of the critiera was I hadnt had chemo before. After chemo I would have rads and then Herceptin indefinately every three weeks. They the funding only take a couple of days to come through so they still plan to start my treatment nxt week. I think I will ask more questions tomorrow now that I have got over the shock but I do find that if you dont ask then they dont offer the information. I will also ask about the removal of my breast and ovaries but I suppose it makes sense to wait until treatment is over there is only so much our bodies can take.Hope your treatment is going well and have seen you on various threads giving welcoming support which I know to me is appreciated.
Angela xxx
Hi Alex
I hope you dont mind me asking but how did they know that what was in your liver was probably not cancer. I thought that before that information was given out they would have to be sure they were dealing with cancer. Thanks for posting back to me it certainly helps to think that once treatment is settled I will be able to return to work and be as close to normal as I can. I think that is what is driving me mad is the continuous thinking about it. Last night I went to a rugby presentation and although most people know about my BC they treated me normal and for a while I managed to forget and just enjoyed the moment. I hope in time that I will have more of these moments. Your right about this forum not sure if I would of coped at all without it. Thanks again for posting.
Angela xx
Good luck tomorrow Angela. Thinking of you and your “light spot”. All the best.
thanks Penny. Will still be dipping in and out with the moonbeams hope your treatment goes well.xx
Hi Angela,
They don’t know for sure that it is not cancer in my liver as they have never done a biopsy. The reason that they think it is probably not cancer is because throughout my treatment it has never changed whereas the bone mets shrank in response to the treatment.
Hope this clarifys it for you.
Good luck with your treatment.
Alex.
Hi Angela, I’m sorry to read your news. I have been living with mets for ten years now. As far as I know I don’t have liver mets but there’s a thread from Blondie in the Secondaries, inspiring news and stories section you might find useful and helpful right now. Blondie has liver and bone mets and is a long time with Herceptin lady. I’ll bump the thread up for you. Be kind to yourself, it’s such a shock to get your head around the diagnosis at first but you will find a new ‘normal’ and there will come a time when you wake up and it’s the usual ‘life’ stuff that you think about before any thoughts of breast cancer.
xx
Thanks Alex and Belinda for posting back to me. I am a little settled today maybe I am coming to terms with it or maybe I am in denial either way I dont feel so anxious. Belinda I have read Blondies posts and she truely gives me hope I hope I can react as well to the Herceptin as she has, but first I have to get through my first chemo and rads. Alex they havent suggested a biopsy I think they want to take a look at it during or after the chemo then discuss options they mentioned possible surgery but thats only if a surgeon will do it as I understand areas of the liver can be difficult to get to. In the mean time I am just going to try and get on with things and take any treatment there is to offer, enjoy being with my family and friends and as you said try and be kind to myself. My usual onc will be back of holiday soon and I feel I have more trust in him as he talks to me like a human being and not just the next patient in line.Thank you for taking the time to respond to me and for passing on your kind thoughts and valued information. I hope you dont mind me posting you in the future.
Angela xx
Hi Angela
Just dipping in to the forum…
You can always ask for a second opinion. All patients are entitled to this and the Consultants are well used to it. There are alot of women on these forums who have had second opinions. I had a second opinion and it certainly reassured me that I was getting the right treatment.
Esha
Thanks Esha
It is certainly something to consider. I was so numb at the appointment I didnt think to ask the right questions. I know I have to have the chemo so I will hopefully be able to speak to my usaul onc soon. He was originally the one that was confident from looking at my ct scan and ultrasound that it didnt show the patterns of cancer but because I was entering into a trial I had to have an MRI. The consultant performimg the ultrasound was also confident it wasnt related to my BC. So far 3 consultants have said it wasnt related to my BC however the MRI is saying different.Hopefully I will find out a little more tommorrow. Thanks for posting Esha. xx
Hello Angela,
It seems to be quite difficult to be sure whether marks are cancerous tumours or not, from looking at the scans. My liver & lung mets were only confirmed when they had clearly shrunk from chemo + herceptin treatment.
It sounds like the funding might be for pertuzumab (perjeta), which is very positive. Its a new drug, given alongside herceptin, which improves results.
I was diagnosed with mets at the same time as my primary bc end Nov. After 5 months of treatment, the mets are virtually undetectable on the CT scan. The largest one in the liver was the size of a tangerine at the start.
I hope this will help give you comfort during the unpleasantry of chemo. Incidentally, I did cold cap & kept most of my hair. Nails are brittle & splitting, but still on!
Good luck, Sarah.x