Thank You for your reply, I am still wondering what is going on, got another letter from Consultant saying it was an indeterminate lesion so he sent my scans to Liver Team for their opinion yesterday I got a letter for a Triple Phase Ct Scan on 26th requested by one of the Consultant who is a leading surgeon doing liver, pancreas and kidney surgery, I had a total freakout which is not me I usually hit things head on, I just think why all these scans surely they can tell if its benign by now, I am trying to stay positive but fear Im failing miserably, I have had a terrible year so far, I was diagnosed with Atrial Fibulation last year then had my Herceptin stopped as it was affecting my heart in March I nearly died had to have a pacemaker fitted and a Cardiac Ablasion so I am still recovering from that and now all this and at 75 I feel I am mentally cracking up a bit, My Oncologist is useless so are the breast care nurses it takes them 3 days to get back to you, I just need clarification one way or another all the waiting drives me nuts, sorry for the rant stay safe and well and take care of yourself
Good to hear from you, sorry its been a while since I have hopped on, work has been keeping me busy.
Thanks for the update and sorry to hear the hospital are messing you around so much and nobody seems to know what is going on. I have had a very similar experience and sadly despite several complaints and having a discussion with the Head of Department at my local hospital, I continue to get "mixed up" scan results.
Don't let the hospital dictate to you - if you don't feel happy or satisfied with what you are being told, keep discussing it with your Oncologist and Breast Care Nurse if you have one and failing that, raise it with the Patient Liaison Service. I do think Oncology departments are so busy they get a lot of things mixed up and for some reason it seems to be that people with secondaries get the worst of it. You are right in that one hand doesn't talk to the other it would seem!
Glad to hear the mammogram came back fine, that's one less worry. In my experience the hospital always like to do tests even if things seem "ok" which is at least reassuring I think.
Hope you are doing ok xxx
Well my head is totally battered I am so confused.
Had a letter from Consultant saying lesion in liver is not typical of a benign lesion or fatty tissue so was told I would have e a Triple Phase CT scan maybe a biopsy.
When I had my mammogram on Tuesday ( it was fine thank goodness ) I mention the liver and she wondered why my Oncologist had not been in touch so she emailed him, his response really puzzled me
He said Everything was fine no need to worry but still go for the tests
Does one hand know what the other one is doing, I think I need someone to tell me what on earth is going on... sorry for the rant I just thought I would update you
Just a catch up to let you know, I saw another Consultant on Tuesday for something different and she told me that they had decided I cannot have a MRI as I have a pacemaker fitted and said I would probably have to have a biopsy
she told me that they think it may be from my breast cancer but fingers crossed its a benign lesion, we can always live in hope and try to stay positive. I still have my boxing gloves on ready to fight
Oh The Joys of Life
hugs to you
Thank You so much for your support, I just needed someone to tell it too that would understand, my head is battered at the moment, I just wish someone would find out what it is and tell me so that I can deal with it. once again thanks.
I'm so sorry to hear about all the difficulties with the scan results for your liver and the whole upheaval of uncertainty that you're going through right now, its just horrendous isn't it. Sending massive hugs xxx
As you've probably seen I've had a similar experience in terms of being messed around about my liver, whether or not its mets blah blah blah....they still don't know for sure, never offered me a biopsy but decided to go ahead and treat me as if it was.
Unfortunately for us, "interpreting a CT or MRI scan is like an artform" (my Consultant Radiologist's words) and you could have four different people look at the scan and they might all see something slightly different or have differing views on what they are seeing. Hence why you won't ever get a straight answer and also why no one individual aside from your Oncologist will tell you the results. They don't realise that all of this comes across as "very bad" to us as patients and we then freak out that the worst possible scenario is happening.
Scan results have to go to an MDT meeting where everyone involved with your case attends and they discuss results as a group and then they jointly decide what the best treatment option is from there.
Its so easy for us to jump to the worst conclusions when we're being told we need more scans and nobody seems to want to tell you what's going on.
The best advice I can share is "don't worry about it for the time being". I learned this the hard way. Until someone can definitively tell you the results, find lots of things to distract yourself and do what you can to find those "good" moments in every day. Acceptance is also a hugely powerful mechanism for dealing with fear and uncertainty - I reassure myself every day that "what will be will be, whether good or bad" and for some reason, I find being accepting of things has had a significant impact on my mental health, for the better. This is a particularly helpful tactic when I'm dealing with pending scan results or any changes....its not an easy new habit to learn but I can't say enough how much it has helped me to cope when things get rough.
Hoping that you get your scans and results soon and that there is clear info. Look after yourself in the meantim xxx
I am not sure what to say or to think. I was diagnosed with grade 3 ductal carcimona ER+ and HER2 + in 2019 I was told I had a fatty liver back in December 2020 from an ultrasound I had on my, kidneys having been passed blood in urine turns out were fine and of normal size I had another ultrasound for same thing and they found a cyst on my liver I had to have a cystocopy to see if any reason why I was passing blood result no cancer in bladder the next thing was an appointment for a CT scan which showed lesions in my liver having looked at scan the Radiologist suggested I have another ultrasound as he was unsure, an appointment was made for an enhanced ultrasound with contrast which I had yesterday, the person that did the test told me as much as she could having telling her not to sugar coat anything I would rather know what I was dealing with what she told me which didnt sound promising and she had to get the doctor to look at it he said I would definately need a MRI scan so 3 ultrasounds and a CT scan they still dont know what it is. by what she said she I took it that it didnt sound benign So now everything is whirling around in my head is it a met from my breast cancer or is it a primary HELP any advice would be good to know
thank you so much. We are over the moon. Such a relief.
I have to a huge thank you for all your support over the past couple of weeks, I truly appreciated it.
Time for me to start enjoying life and no more looking back.
I wish you and Gillyflower and all the ladies on here well. You are all I’m my thoughts.
much love xx
I am in a very similar position to you - very healthy and fit but they have spotted small lesions in my liver from my BC so I am now going to receive 18 weeks of chemo - I am so confused how this dam disease can change your life so quickly - I can't sleep or don't feel hungry. So many people have told me how chemo helped them and my diagnosis is years - but what does that really mean. All I can say is ask lots of questions - do you have a cancer nurse you can call and ask questions?
Remember your live is the only self healing organ so we can do this!
That is good news that the chemo is being kind to you.
Well I have good news too. The lesion is a haemangioma. Everything is clear, liver, spleen and kidneys. I asked the consultant about the my alt level which this time was 38 and she said it is absolutely fine, nothing to worry about.
So there you have it. Everything is good 😊xx
Hi in doing fine thanks. The chemo is being kind to me this week.
I'm keeping everything crossed for a good result for you.
Keep in touch xx
how are you doing?
I am okish ha. Seeing the oncologist tomorrow. I am absolutely petrified. I had my pneumococcal vaccination and lft yesterday and was told it had improved but still a bit high at 38 Which is a bit of a positive. I am wondering if the mirtazapine 45mg I was on at the start of this year and last year caused it. I came off them straight away when I was told my lft was abnormal a few weeks ago. I shouldn’t have come off them all of a sudden really, as my anxiety at the moment is sky high.
It could also be due to the letrozole and zoladex? Who knows. But I do know that my bloods were fine at the end of last year. I eat healthy and walk 3 miles a night. I will hopefully be told what the lesion is tomorrow. Xx
i hope you are doing well?
i don’t understand any of it tbh. Last year they found a haematoma and haemangioma. It seems that this year it could be something else. Last year I was scanned so much, it got ridiculous. I eat very healthy so really don’t understand if this is something else 😟xx
Sending hugs as I've just read about your updates following your scan xxx If they are referring to a liver specialist that's actually a good thing because it means that they are getting the right professional involved to have a look at it. There can be positives to these things as well as the scary side. I know the waiting is the really awful bit but hang in there. I'm keeping everything crossed that its a good result for you xxx
It's possible there is liver damage but not cancer. Maybe that's why a specialist. I'm keeping everything crossed for you xx
Ive just phoned the breast care nurse and she said my ct scan has had to go to a liver specialist. Is that normal? I thought it would be discussed at the breast MDT meeting yesterday but was told they aren’t liver specialist. I am really frightened now xx
I hope all is going well with you?
I have an appointment with the oncologist on Wednesday morning. I’m guessing the CT scan and my mammogram were discussed today at MDT. It’s a shame they won’t phone to let me know what was discuss. I am worried as you can Imagine.
take care love Mags xx
Hope today went well for you. Thank you for your message. I have had my CT scan this afternoon. It went well however I was in the scanner for longer than last year. They did a delayed scan after waiting 10 after the initial scan. I didn’t sleep last night, so not feeling great today. I am still waiting for the mammogram results too. Xx
Hi Sunflower hope the scan went well. 2 chemo just done. I'm posting as waiting for cold cap to finish. My treatment has taken ages today because my gp surgery didn't send bloods through to hospital. Which meant I needed to come here early and get them done again. Great fun. Take care xx
Hi more again. Just reread your last message. Have you tried meditation to help with sleep. There are some great ones on line. I downloaded fragrant heart. It focuses on bc. Sounds a little dull but if you get into it it's quite good and you can choose so ie for stress or fear and choose time you listen as well. Worth a try xx
Sunflower I had the breast biopsy too. Yes the liver is similar. In fact I'd say on my experience I prefer the liver to breast as sometimes it would sting alot. Speed humps on the way home were a treat (not!) Because I did a trial I had breast biopsy quite alot. If you did that, You can do the liver ones if needed. Keep in touch 💕xx
Oh blimey it sounds a bit like the breast biopsy I had last year. I’m had a couple done at different times. One hurt but the one at a later date didn’t as they put more anaesthetic in. I remember the the pinching part with the needle with a spring. But the liver biopsy, terrifies me. I’m sure I would have to be ok with it. I keep having wobbles, particularly at night. Having breast cancer last year really knocked my confidence and I’m still trying to get it back. Now this. Thank god for this forum and talking to people like you, has really helped. Lots of Love xx
Wow fantastic news about your scan. I'm sure if you need a biopsy it will be fine. I was awake but yes the area was numb. The only bit I remember was the feeling of a pinch and hearing that happen.otherwise no pain or anything. They were very attentive throughout holding my hand etc.
I'm keeping everything crossed your scan will show good results. But if it doesn't dont panic there are lots of us here still. Working our way through meds with liver mets. Take care. Lots if love xx
hope all is well with you? Thanks for your reply. My scan now is tomorrow as they have managed to bring it forward. You are so brave having a liver biopsy. I feel if I would have to be put to sleep to have one. Did you have an anaesthetic to numb the area? Xx
Glad to hear your chemotherapy is going well. I had a call from the hospital on Friday as they have a cancellation and able to get me in for an appointment tomorrow afternoon. So pleased. However, I phoned the consultants secretary to see if they could discuss my case at MDT a week earlier but I haven’t heard anything back yet. I do feel very up and down. Particularly with what my breast care nurse says. I have booked a couple of days off work at the end of the week to hopefully enjoy the sunshine xx
Hi Sunflower I'm glad you have a definite date for your scan now. Its so difficult waiting for things to happen. I had a liver biopsy when I was first diagnosed. It was ok really. I didn't feel a thing. It took time as I did a trial too so the took 3 samples. You have to lay on your back and each side for about an hour each side but other than that it was ok. I didn't have any I'll effects following it confirmed the cancer receptor status. If you need one. I would say try to keep calm and get it done. Lots of love. Jennie xx
I'm doing well thanks! I've just finished Capecitabine on cycle 2 at a reduced dose and it went much better than I could have imagined. How are you doing at the moment?
I've never had a liver biopsy (I'm sure there are ladies here who have had and can tell you more about what its like). I did some reading up on it and as with anything medical, when you see it written down it makes it sound ten times worse than probably what it actually is in reality. So I haven't pushed for it....yet!
It sounds like your team don't fully know themselves yet what is going on. To be honest, mine don't always either and I've learned that the "left hand doesn't talk to the right hand" on a frequent basis!
I think its a bit odd that your nurse said that about your liver ultrasound not showing hemangioma's or haematoma's as I'm pretty sure when I had a liver ultrasound done last it did pick up the hemangioma's as well as my cysts. I can't quite remember though, I might be getting confused with a CT scan but anyway, take everything they say with a pinch of salt until you've been able to confirm the facts for yourself or feel satisfied that you have the correct information.
Glad to hear you have a CT scan booked for a week on Monday! I know the waiting is awful though, so I hope you can find things to do to take your mind off it and enjoy your summer a bit more xxx
Hope you are doing well?
Are biopsies of the liver a very invasive procedure? Things like that really scare me.
I went for my first mammogram since my mastectomy yesterday. I didnt get the results on the day, like they normally would do. I have to wait. All due to covid :(. The breast care nurse checked me over for any lumps and bumps and she said all looks good. She has booked me in to see the oncologist once my CT scan results have been discussed at MDT. MDT meeting will be the same week as the scan. Anyway I asked her what the consultant said about the ultrasound scan and she said that he seems to think it is something innocent. But i did ask her if haemangioma's and haematomas can be picked up on ultrasound scans. She said not really. So on one hand she is playing it down, on the other hand she is kind of saying this is something new, as haemangioma and a haematoma was picked up on the scans from last year. I am very confused. CT scan though is a week on Monday. xx
Hiya, glad to help a bit, its scary enough what you're going through xx
I didn't have a liver biopsy but I am contemplating having one - its hard to make up my mind as liver biopsies come with their own issues and I was reluctant to be "out of action" if I went ahead with one. I'll let you know if I do decide to go down that path after my next scan!
My treatment changed to Capecitabine (chemo tablets).
I'm glad you mentioned the stomach thing actually - I've noticed that my belly has definitely got bigger since I started zoladex. Its like someone put a watermelon in there!
Your nurse is totally right - don't panic as it could be nothing (yet she probably doesn't realise she is part of the problem by having caused you to panic in the first place).
Your team will see hundreds of patients so its very likely they won't remember all the exact details of your individual case, which then leads to them communicating things in a manner that causes panic when there is no need. I can guarantee you that every time I speak to one of my Oncologists or my nurse, they will have completely forgotten some of the aspects of my case and I have to remind / talk them through what we previously discussed. I actually put in a complaint about the way they diagnosed my new liver lesions from the last CT scan and I queried if a specialist liver consultant shouldn't also be asked for an opinion, given I have a poly-cystic liver disease which can also present with lesions that mimic metastases. I'm still waiting for their response on that!
One thing that I've had to learn quickly is that this disease can change at the drop of a hat, so you have to find a way of getting to a point where you can cope with the uncertainty of it xxx
Thank you so much for your reply. I really do appreciate it.
Did you have a liver biopsy?
I was told last year I have a haematoma and a Haemangioma, one on the right and one on the left lobe. I was told last year there was nothing to worry about. My GP sent me for a scan as my stomach is big, but that is down to the zoladex and letrozole. I went to the ultrasound and was told to sit down after and was told that it was focal fat sparring. I know I shouldnt have read about focal fat sparring on the internet, but read it can minic metatastic tumours.
My breast care nurse phoned to say they have found a lesion and that i need an urgent scan. I cried on the phone, but said that I had a haematoma and haemangioma on my scan last year. I couldnt believe she said to me at that point that my prognosis last year was good. Was good. That frightened me.
I phoned the breast care nurse again this week and said i wasn't sleeping with worry and can the scan be brought forward instead of waiting another 2 weeks for a scan. She said try not to worry it might not be anything. Well I find her terminology confusing, one minute she was in a panic and said i need an urgent scan, this week its, don't worry it might not be anything. I am up and down like a yoyo with my emotions, i don't know what to think.
Can I ask, what did the oncologist change your meds to?
Last year i was scanned so much, I didnt think i would be in the same position now as i was last year 😞 xx
Sending you hugs, the change and the waiting for scans and the results is just awful and I can empathise xx
As Jennie has said, don't write yourself off and do stay off Google. I went through a similar thing back in April this year. Like you, I have a number of benign cysts and haemangioma's on my liver and always have done. I was also told they are never anything to worry about, they always pop up in different places on my liver.
In April this year three tiny new lesions apparently appeared in my liver but I was told that the new lesions were too small to tell what they were for sure, but they were going to presume were breast cancer metastases to be on the safe side. My Oncologist explained that they don't actually know with 100% certainty if the lesions are cancer or not (unless I had a biopsy) but they have to presume that they are in order to make sure I can get treatment that is effective. So I had my treatment changed.
A couple of things I have noticed that have escalated my anxiety and fear since being told I had secondaries: my GP has been phoning me more often to see how I am doing; secondly I've observed that all my clinical team have a habit of speaking really seriously all the time about everything - which has left me in tears on many occasions thinking I'm going to die soon!!!
I've learned that the way medical staff speak/act can and often does make things sound ten times worse than what it can be. What I do to manage my anxiety and fear is concentrate on how I'm feeling. If I feel mostly well, I can be physically active and go for walks, do all my normal daily activities without too much trouble, then I know I'm doing alright.
So until you have your scan results, don't be tempted to read into everything. Even if the new lesion is cancerous, there are still plenty of treatment options out there and many people live for many years even with liver mets...there is always hope so don't give up and write yourself off!!! xxx
we definitely need to support each other. Oh bless you. I am glad you are feeling ok.
I spoke to the breast care nurse yesterday and said I would like the scan privately and she said that the they find it difficult to download the scans etc. She also said what they found on the ultrasound may be what they saw last year. She was playing down how I am feeling. I told her I’m not sleeping. 3 weeks is far to long and not fair to expect anyone to wait that long. I live in Cheshire so not far from The Christie hospital xx
Hi Sunflower. The waiting is the worst thing. 3 weeks is too long. Maybe contact your oncologist secretary and tell her you cant cope with the wait. You wont be telling any lies. I opened up to her when I was first diagnosed and said I'd like to go private instead. We booked the private appointment but the the NHS came through that week. Worth a try. What partbof the country do you live in? I'm in Cornwall and scans ate going ahead. Good luck with it.
I had my first chemo yesterday. Feel ok up to now just a bit sleepy and achy. Take care. Keep in touch. We all need to support one another 💕xx
I hope all is going well with you?
Well I received my appointment for a CT scan and it turns out that the appointment is on the 10th August. There is a 3 week wait due to covid 😐. I’m not sleeping with worry but so tired xx
A five week wait isn’t good. My CT is on a 2 week wait, so I am hoping the appointment will be soon. I don’t know if they will phone or send me an appointment by letter. I am keeping everything crossed. X
Hi Sunflower I agree the waiting is horrible. When I was first diagnosed with secondaries they said the needed an CT to confirm it. We were so anxious that we decided to go private as they said it would be a 5 week wait. As soon as we said we would pay an appointment was made that week on the NHS. That's the only time since then I had anything put on hold. I e been very well looked after. Hope you get your appointment soon x
Many thanks again for your reply.
I didn't have any nodal involvement at all. But I did have pleomorphic cells. The whole of my left breast was cancerous, that's why i had to have an mastectomy and just radiotherapy and no chemotherapy. I wasnt convinced with what they told me last year, but my partner and his mum kept saying it wont come back as i have been scanned so much. Now this. I don't understand. I am still waiting for an appointment for a CT scan. The waiting is the worse part. xx
Hi I was told that I had cancer in only the first node after primary and they got it all. But when it returned they said it probably got out of the node and travelled in the blood stream. They said on paper I read as a person who will not have a reacurance and were surprised it came back.
I've had fantastic treatment and support. I manage to stay positive most of the time. But hate ct scan results and changes which are part of this process.
I hope you have answers and a plan soon. Take good care xx
Many thanks for your reply. I really appreciate it. I am so sorry for what you are going through, but it is great news that’s your cancer team say they can treat you.
I thought I would never have to come in hear again. I am frightened, hence why I came back to ask questions. My bc was found last June and I had the mastectomy and radiotherapy. However I did find out that there were 3 different cancers in my breast. One being pleomorphic. I didn’t have chemotherapy as the oncotyping Score came back very low. Now this. I didn’t have lymph nodes removed but I was wondering if cancer cell don’t have to go through the lymph nodes to spread. Can they spread via the blood system? Xx
Hi sorry to hear your news. Dont google and dont write yourself off. When you have a plan and know what you are dealing with you will be able to get on with life again. Secondaries started for me in October Halloween to be exact last year. Liver and lung. I'd hardly been Ill! But I've been on treatment ever since and have got on with life pretty much as normal. Changes have come now I I start chemo next week but the team are again sure they can treat me. It's far from easy but denial and acceptance come into play. The ladies on this forum also keep me positive. Take care. Ask questions. But dont give up! Xx
I am on letrozole and zoladex and have been since last November. I had a mastectomy last August after finding out I had breast cancer last June.
The side effects of the hormone medication have been terrible, my stomach is very boated, my joints hurt, i get heart burn, tired all the time, the list goes on. Anyway i mentioned my weight gain to my GP a few weeks ago. she organised an ultrasound scan. I updated the breast care nurses what was going on as i want to change my medication due to the side effect of the medication. I was told to call her back after I have had an ultrasound scan. The lady who did the ultrasound scan said it is probably focal fat sparing.
I phoned my breast care nurse back to get an appointment with the oncologist to change my medication. The telephone consultation should have been last Wednesday. However, I got a call from the breast care nurse to say that they have found a lesion in my liver on the right lobe. Last year i was told i had two lesions; a haematoma and haemangioma, one on the left lobe and one on the right. I was told they were nothing to worry about.
The breast care nurse phoned me last Friday to say that the consultant was looking at the ultrasound scan results and comparing the MRI and CT scan results from last year. She confirmed yesterday that they have ordered at CT scan for me.
I am extremely frightened as was given a full bill of health last year and was told that my prognosis was good. Last week she repeated that my prognosis last year Was so good. What is she trying to say now? Now this. Wondering if the bc has now spread to my liver. I received a call from my GP last Friday and yesterday, as they seem to be really worried about me.
Please can anyone help ease my mind, as I feel like I have written myself off already. I am not sleeping with worry. I eat extremely healthy too. Is there anyone in the same position as me, if so please, please share with me x