I’ve had a ‘not right’ feeling on my right-hand side just under my rib. Feels swollen from the inside not the out. Thinking about it, I’ve had it for some months - have still got jelly belly after pregnancy so put it down to that.
My cousin had bc dx 2 years ago, then secondaries to liver dx 2 weeks ago - she passed away on saturday, just 2 weeks and 1 day.
To say that I’ve become paranoid is an understatement - keep crying. Dont know what I’d do if I was told 2 weeks - emotional rollercoaster again!!!
When dx in aug, I had bone, MRI and CT scans. Was only told that I had bone mets and that there was no spread to other organs.
After worrying myself silly all weekend, I foned BC nurse this morning - who looked at scan results on pc - and told me that my liver was enlarged but no signs of anything else had showed up. News to me!!!
Anyway, she has got me an appointment to discuss it and possibly further scans on Weds 02 Jan but thinks that its a bit too soon to be doing more scans.
Anyone been in similar situation??
I’m ER+ HER- (I think), can anyone enlighten me on their experiences regarding chemo etc???
I am due to change from Tamoxifen to Arimidex soon.
Anne I haven’t been in the same situation but just wanted to say how sorry I am about the death of your cousin…such a shock for you and your family.
Perhaps they might do some blood tests to see if the liver function is normal and also an ultrasound of your liver.
So very sorry to hear about your cousin, and also about your liver pains – you didn’t say where you have bone mets, so might it be possible that you’re getting referred pains from these? I hope you’ve been offered bisphosphonates to help with your bone mets – sometimes these mets can be painful while they’re being healed/controled.
I’m a little bit surprised that your CT/MRI scans showed some liver enlargement but your docs didn’t think there was any need for treatment – despite my very normal bloods and liver function tests, my oncologist very promptly put me on Xeloda (oral chemotherapy) when I had liver mets diagnosed via an ultra-sound scan, shortly after bone met diagnosis. That was over four years ago (October 2003), and, except for a bit of progression in my liver over two years ago, I’ve been “stable” and pretty much pain-free since I started treatment – and continue to have “normal” blood test and liver function test results. When I had progression, my onc changed my aromatase inhibitor from Arimidex to Aromasin – seems to have givenm me another two years of “stable” scan results. Currently, I’m taking Aromasin (exemestane), Bondronat (oral bisphosphonate) and Xeloda at a low dose.
It’s hard to compare experiences, as we’re all so different in our responses to our cancers and treatments. I too have lost some friends to this disease, but I also have friends who have lived for many years since secondary BC diagnosis – no doctor can actually tell how long we have until we’re very ill – so please do take heart from our experiences.
I hope my post and others who will also tell you about their experiences help to reassure you – although I know it’s difficult to do, please try to put your anxieties away for a week, so you can have a good Christmas with your family.
Love, Marilyn xx
Anne I’m so sorry to hear about your cousin.
I’m not sure if this is of any help but I was on Tamoxifen for 15 months and during that time I had a liver ultrasound. I didn’t have any mets but my liver was very fatty which is a fairly common side effect of Tamoxifen. I wonder if this would cause the enlargement…?
I hope you can enjoy Christmas with your family…try not to worry…not easy I know…Love Belinda…xx
Thank you for your kind words, ladies
Belinda - I googled enlarged liver earlier and somewhere it does say about being fatty causes enlargement but …I was only put on Tamoxifen October time??? Though had been on it for 5 years previously (2001-2006).But maybe.
Marilyn - my bone mets are pelvic/lumbar region and a spot on my ribs. I have just had my 4th Zometa IV and apart from when I need a top up, the aches have really subsided.
On top of the news of my cousin, its the first Christmas without my Mum - she died in February to bladder/bone cancer, Hubby’s niece (aged 4) has been rushed in to hospital tonight - possible abcess on brain or possibly viral meningitus - being CT scanned as I type.
I love Christmas usually and its our baby’s first, so I should be really excited.
Anyway, enough of my depressive talk and once again thank you for your help and I hope that you all enjoy your Christmas.
Anne, just popped in to see if you’d posted again…re the fatty liver it didn’t take very long for mine to become ‘fatty’ (a few months) and even though you had a break you had Tamoxifen for a long time. I think a fatty liver is even mentioned on the Tamoxifen leaflet’s list of side effects…?
Hope you can enjoy your baby’s first Christmas…it must be hard without your Mum…and worrying about your niece, I hope she’s okay…but here’s hoping you manage to have some good times over Christmas and the New Year.
Take Care Anne.
Very sorry to hear about your cousin, Mum, and niece. How is your niece doing? It sounds like it’s been a difficult year for you. I pray that 2008 will bring good health to you and your family.
I was prescribed Tamoxifen too but didn’t really take it much two months before my scans in July. At that time, I was told I had a fatty liver but also that there was NO sign of mets. I was recently switched to Femara because of a bone mets dx. In addition to the Femara I’m supposed to get a monthly shot or have my ovaries removed. Anyway, I wonder if chemo treatments, like taxol, cause this condition as well?? I don’t know. I also get a vibrating like feeling in that area too when there is pressure on it. It’s kind of odd, hard to describe.
PS: My sister-n-law and I battled this terrible disease side-by-side over the last year. She passed away Oct 16th from mets to liver. I felt very much like you do now. I feel very lucky to have found this forum. I felt so lost after losing her and than the dx of the bone mets. I visit this site almost daily because I get so much reassurance that there are others like me (us) who are living with mets and that they are doing well.
Just popped on to update you so far and to say thanks again.
Belinda - I had a look at the side effects of Tamoxifen - thank you for pointing this out - it could well be a factor.
Janet - I remember reading your posts about you and Sil - so sad.
You have concerned/confused me a little with your post:
re Tamoxifen - ‘I was prescribed Tamoxifen too but didn’t really take it much’ - how come you didnt take it?
also,’ I’m supposed to get a monthly shot or have my ovaries removed’ - dont you automatically get your monthly shot?
I suppose I’m baffled because I’ll grab any treatment that they offer me at the moment.
I like your description of the liver feeling because I too am finding it hard to describe and have been wondering how I can describe it to them when I go to hosp next Wednesday. But, yes it does feel like a vibrating feeling but numb but pins and needles as well sometimes.
I think that I just need extra reassurance and am keeping my fingers well and truly crossed.
Niece is still in hospital - thank you for asking. They have now said that she has an infection in her bones around her skull and this is giving her the pressure around her eyes. They are doing lumbar puncture and other tests as well. Poor little soul!!! Hubby is on phone as I type, getting the update - she is allowed to come home but must go back to hospital twice a day to have anti-biotics injected ???
It certainly has been a chronic year this year. I wish you all the very best for next year.
I too dont know what I’d have done without this site and its members - thank you
Anne, so sorry to hear about your recent loss and your serious concerns about family health problems, as well as your own concerns.
Don’t know whether it helps, but I too have an enlarged liver, but no mets dedected, despite MRI, ultrasound and LFT. I did develop gallstones and have had these removed since finishing chemo and oncologist think there may be a connection. But liver still enlarged , but still NED. I was on Tamoxifen for 2 years , but when they discovered the liver problem had been off those for 4 years, so very unlikely that there is a connection. They now think I may be just one of those people with a larger than normal liver!! I do get the odd pain on my right side, but nothing very serious, just a sort of dull ache. I also have IBS (started during chemo) and again, they may think it ccould be related to that. Basically, I am not too woried, I have regular check ups and unless I get a lot of pain, they’ll just leave things as they are.
Hope this is of some help to you.
Hi to All;
Just wanted to answer the above questions
- I was prescribed the Taxoxifen after I finished chemo in January. I didn’t have a period since August 2006 so when I took the pills the hot flashes were unbearable. My Onc offered to treat the hot flashes with an anti-depressant. I’m diabetic and have GERD really bad so I take meds for those conditions too. The thought of more pills just didn’t go over well. So, I stopped taking them. I started to worry so took them again as prescribed but only for a few weeks. I did end up have a period again this last November so started taking the Taxoxifen again out of fear.
- The monthly shot to shutdown my ovaries was ordered after the bone biopsy came back positive. So I had my first shot last Thursday and switched to Femara . Not sure why it wasn’t pursued before the bone mets dx. I am ER+ and HER+, so I’m getting Herceptin (3 weeks) with the Zometa (every 6th week).
I’m so very sorry about your niece. I will keep her in my prayers and I will ask others to keep her in their prayers as well.
So sorry to hear about your cousin, it must have been a big shock to you. I don’t want to frighten you but I have an enlarged liver plus liver mets and I get that wierd feeling you were describing. I was put on Tamoxifen when first diagnosed with mets but it made me worse and I ended up having chemo from Aug til just before Xmas. Having a break from treatment now but go see onc in Jan to see whats next thought think it will be some other type of hormone therapy as ER+ HER-. My liver mets were diagnosed through ultrasound and confirmed with CT scan.
I am keeping my fingers crossed that the feeling you have got is just from your enlarged liver but its worth checking it out.
Take care & good luck,
Thanks again everyone.
I am sh!tting myself about Wednesday - visit to onc.
Hubby is behind me all the way - but he doesnt want to go either!!
Tears are welling up as I type this, but I just need to know and if there is any treatment they can give me, then I’ll go with it.
Love Anne xx
Hope everything goes OK for Wednesday, will be thinking about you and hoping you get some good news. I wish there was something I could do to help, but all I can offer is lots of love and cyberhugs to you and keep everything crossed.
Can’t really help with the liver problem, as had nothing with mine whatsoever, but you know my dx anyway, and there were no symptoms. Hopefully your enlarged liver is as others say, something to do with the drugs.
No point saying don’t worry, just try not to think about it too much and enjoy your baby over the next few days, sure he will take your mind of it, as I know mine do. Also hope your niece is doing better now too. Thanks for your other post, you know what I mean, meant a lot to me.
Lots of love to you
Good Luck for Wednesday Anne, I will be thinking of you. Belinda…xx
Just an update of today’s visit to Onc.
Didnt get to see top bloke but really nice, straight talking, fully explanitive Registrar who I have been with before.
BCN stayed in with us too.
I explained my worries to her and also told them about my cousin.
I was ready to burst in to tears which makes it even harder work!!!
Anyway, Registrar had a refresher of earlier scans and told me that there was nothing to suspect any further spread.
Mmmm??? Not what the other BCN had said - ie enlarged liver.
She told me that she would request a CT scan but this would not be an urgent referral.
She examined me but said that everything felt normal.
BCN will chase up the scan.
Reg totally understood my concerns and agreed with me that if there was anything untoward going on, then I would rather start further treatments sooner rather than later.
How am I feeling? - still tearful but relieved!
Hubby is a lot less stressed too.
I am still on tenterhooks but at least, this is a step in the right direction.
One thing that did baffle me was, they do not carry out routine scans!!
Only, if and when a patient presents questionable symptoms!!
I think that is about it in a nutsell but will run this post by hubby when he gets in, to see if I’ve forgotten anything or could’ve phrased it differently …I shall edit accordingly.
Thank you for your help
Lots of love
That sounds positive news I think - and hopefully when you do get your scan, it will show nothing untoward. Fingers crossed and lets hope the start to 2008 is good news for you.
I hope you are doing OK though, replied to you on my thread on other site too. You have been so supportive to me recently so hopefully if there is anything I can do to help you, just shout and I will be there. But you know my shoulders are always here for you to use if need be.
Take care hon and let us know how things go on.
Lots of love
Hi Anne, just popped in to see if you’d posted.
My liver changed so much while I was on Tamoxifen which is why I had a liver ultrasound in 2004.
Good Luck with the CT scan. Hope you’re now feeling more reassured.
I’m glad this registrar has put your mind at rest and you’ve been referred for a CT scan which will hopefully allay any other fears.
Hi all, just checking in on Sixpen too. Glad a scan was ordered, keep us posted on the results.
I have a question - what is the difference between having a CT scan verses an ultrasound? I’ve heard people having one or the other but why is one selected over the other?
I’m not sure why a CT scan rather than ultrasound - I didnt have ultrasounds in the first set of scans either.(bone, MRI and CT)
She did say that they would be able to see bone changes in the chest as well from it ??? I was dx with a spot on my rib originally.
I will keep you all posted with results - thank you for listening and being here for me.