MRI FINE, SO WHY AM I WORRIED

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Early in the year I had two small spots on my liver, one 8 mm and one 10 mm found on an ultrasound of which they said liver metastases couldn’t be excluded. After three weeks of pure hell I had an MRI, which showed that they were basically a cyst and a hemangioma. However, I have had right shoulder pain for months and I keep getting what I would call twinges and aches in the right side, under my right rib cage more so over the last week. I was absolutely delighted obviously when I got the all clear, but now starting to think did they get it right etc. They suggested 6 monthly follow ups of which I’ve just had and I had a further ultrasound which said the two patches hadn’t grown there wasn’t anymore.

What I am wondering is can cysts or hemangiomas if they are that small ache and cause twinges. Could the fact that I like the odd glass of two of wine make them ache etc. It is like a sort of niggly little sharp ache, not a great pain, but I am just conscious of it. I have seen the MRI report, I’ve even got a copy in my bag, so I trust them as such, but I keep worrying has the MRI missed something. I’d always thought MRIs were fairly precise, but if anyone knows anything different please let me know. I am seeing my GP early next week and I have an appointment with my General Surgeon in two weeks time as follow up from my original ultrasound, which I had done in January because of irritable bowel problems. So I will be getting checked out hopefully fairly shortly.

I had bilateral mastectomies and recon following Stage II Infiltrating Lobular Breast Cancer 3 years ago, and until all this never really worried about secondies etc, I have to say, but now it’s in my thoughts again. If the twinges hadn’t come back I suppose I wouldn’t even be worrying, but I just am worried I am sitting on something that could come back to haunt me.

Julie

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Julie,

First of all I think MRI scans are pretty accurate. Are you taking Tamoxifen, or Arimidex?

I too had lobular cancer 3 years ago and was switched to Arimidex in November last year. I have been having joint aches ever since and it isn’t getting any better. I understand your worries because as it moves to other joints you begin to wonder.

I am seeing my Onc at the end of this month and have emailed her to warn her that I want time to discuss this as I am seriously considering coming off Arimidex and going back to Tamoxifen.

Speak to your general surgeon about your worries in 2 weeks - print this off and show him/her if it’s easier. They have to realise our worries are real, even if unfounded.

Good luck. Caz xxx

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Hi Caz

I’m taking Arimidex. Just changed from Tamoxifen about 5 -6 weeks ago. Joints are really achey. However, went to GP and he prescribed Pregabalin for the joint pains. They have helped with most of the pains, apart from the shoulder pain. I’m exactly the same. I have been feeling miserable on Arimidex. Emailed my breast care nurse, as I work at the same hospital, to try and get an appointment to see her re the Arimidex and possibly changing. I am not sure of the percentage differences between Arimidex and Tamoxifen for prognosis. I know Arimidex is supposed to be better, but by what percentage??

I am sure you’re right about the MRI scan. I think possibly the pains and twinges are due to the hemangioma. I believe even small ones can cause problems from time to that, so I am starting to wonder if it is that causing the shoulder pain. Going to GPs on Monday and Surgeon the following week. I am even thinking of asking to see a liver specialist. The Breast Surgeon was very straight to the point a few months ago when I had the liver scare, it was a case of you’ve got a cyst and a hemangioma, everything’s fine, but there was no talk of why I had the shoulder pain, because it wasn’t connected to the breast he wasn’t really interested, so I am still uncomfortable, the region of the liver is hurting as I type this, it’s a sort of sharpish pain under my right rib cage inbetween waist and chest.

Did you have a mastectomy, what treatment did you have?

Julie

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Hi Julie

First op was LD immediate reconstruction but they didn’t get clear margins so had mastectomy a month later with becker implant, then 6 x FEC and 5 weeks radio.

I was just 44 when dx and had been on the pill for over 20 years, the last 4 the mini pill. I had not had a period for that last 4 years and the chemo tipped me over into menopause. Upshot was that by November last year I had been two years on Tamoxifen and being post-men they switched me to Arimidex.

I had heard of Adjuvant Online through this site and it was one of those things I kept meaning to ask about but there always seemed to be something else and I never did.

Now I feel I need to make more informed decisions and so I’ve emailed her to warn her I will want to talk about it, rather than a quick 10 minute ‘check up’.

One thing I am realising is that, if we don’ task we don’t get told, and it’s only now that I feel able to. I think when you are having treatment, and for a long time after you are too involved in that to see further, if that makes sense.

My aches are all in the joints and getting worse, and coincide with the change of tablets. I gave it a while to settle and it isn’t. You describe it well. I’m sure posture etc doesn’t help but I want real answers.

Do talk to them when you see them - I’m convinced Arimidex has a lot to answer for!

Good luck and us know what they say. Love Caz xxx

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Hi , maybe everyone knows this but can anyone tell me why you would take Arimidex over Tamoxifen . I have been taking Tamoxifen for about 6wks now . Is Arimidex for after the menopause?

I also have a persistent ache and feel that my onc thinks I’m over anxious and looking for something . He would refer me for scans etc but then he says what will you do with the results , scans carry their own risks and mentally the stress is incredible thereby putting greater stress on the body ? I’m not sure how to deal with this really. He’s made me pretty scared of even going for a scan as basically if secondaries are found - what will you do with that information?. They were his words to me.

His advice is not to worry , easier said than done isnt it.
Cally x

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Hi Caz

Think you’re definitely right. Arimidex seems to be more bother than it is worth. You’re spot on when you’re talking about just getting through surgery and treatment and not necessarily asking about things, but you are so absorbed with dealing with the day to day that you can’t sometimes think of anything else, and you trust the medical staff around you, so you tend to just accept what they say. Whenever I ask or question anything I always get this astonished look as if to say how could you possibly question this, but I can’t see the point of suffering with pains as I am now when I could go back to Tamox. I was perfectly happy on Tamoxifen, didn’t have one problem on it, and I didn’t know there was anything else to take. Just assumed I was going to be on it for five years. I had a hysterectomy with removal of ovaries last summer, so obviously past my menopause. Went through a sort of menopause for about six months after my hysterectomy with the flushes and the mood swings and feeling crap, so that is why they suggested Arimidex. Anyway I am going to get this liver nonsense sorted out once and for all those. Thanks for all your comments. I will let you know what happens.

Hi Cally

Arimidex is suggested to woman who are known to be through their menopause, whether natural or in my case surgically through hysterectomy. They don’t give it to women who pre or perimenopausal, just post menopausal women. It doesn’t protect your bones like Tamoxifen does, so consequently you can have osteoporosis and you need to have bone scans to check bone density in the long term I believe. It gives you terrible joint aches and pains. You feel as if you’ve done a work out for the first time, your ankles, knees, legs, neck, everything aches. I went to grab a cup of tea my partner was handing to me this morning, and my arm really hurt just grabbing the cup, it’s pathetic, but it’s supposed to give you a better long term prognosis, although I don’t know the percentages between that and Tamoxifen. Some people have problems on Tamoxifen, but I didn’t.

I quite agree it’s easier said than done trying not to worry. To be honest until my liver scare a few months ago, I never gave secondaries a second thought, and I hadn’t been on this site either until then, and my BC was 3 years ago, but it’s not until you have a scare like that, and the reality hits you that you’ve had this disease that could rear it’s ugly head again and every pain becomes a worry. I think with this it’s purely because it’s in my liver region. If it was a pain anywhere else I probably wouldn’t be so worried, but it’s just the thought of the liver. As for your Doctor, I think that’s a daft thing for him to say. He’s frightening you into not getting things checked, and if you had any real concerns you should get checked or scanned. Although I am sure you are fine and have no reason to worry. In this day and age if secondaries are found they can be treated, at least if even to give you a longer life span. I get what he means, but these days secondaries are not necessarily the end, if they are found very early treatments can be done to try and help things. There are girls on the secondaries site who were diagnosed a few years ago and are still going strong through treatment.

Anyway I’ll try not to worry if you try not to worry, lol.

Thanks for your comments girl.

Love of love

Julie x

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Julie, how well you describe it!

I came home from work on Tuesday in pouring rain - it’s only a 10 minute walk. Holding a brolly, when I got home my hand was sooooooooooooo stiff and achy. When I wake in the morning I am so stiff it takes me longer and longer to get mobile. Infact this morning I actually rang in sick as I just couldn’t get going.

I found some anti-inflams (Diclofenic) that were given to me when I had a frozen shoulder after surgery. I have tried to do without tablets, but the joint aches and stiffness are interfering with my daily life and so I’ve taken one today. Have to admit I feel a lot easier, but I don’t want this combination of Arimidex/diclo for the next 3 years.

I understand your worries about the liver, and am sure that once you speak to them and get the information that relates to you then you’ll feel easier. They say we know our bodies, but I think we can get paranoid about every ache or pain that, before bc, we wouldn’t have noticed.

Cally, I’m assuming if you are only 6 weeks into Tamoxifen you have only recently ‘finished’ treatment of surgery/chemo and/or radio? If so, the aches are to be expected and I can remember feeling the same. We seem to forget that we have had major surgery and I think it’s to do with the fact that we are perfectly ‘healthy’ until diagnosed! It does get better and I found with tamoxifen the symptoms settle. I looked on it, once I’d finished the radio that I was as cancer free as I was ever going to be and that the aches and pains were my body rebelling at it’s rough treatment.

That said, is it an ache in a particular place? Is it constant? A word with your own GP might put your mind at rest, as these fears are very real to us. I was paranoid about a pain in my shoulder getting worse about 2 months after surgery - My silly Macmillan nurse (I know most are fab but I changed mine!) told me I needed to exercise more. I was already doing the exercises for an hour a day! Eventually I saw my GP - turned out to be a frozen shoulder! Apparently can happen after surgery but I was scared to find out too!

Check it out if you are worried - we should not be made to feel bad about our fears.

Love Caz xxx

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Caz

You might want to try Pregabalin. I went to the Docs because I had heard Gabapentin was supposed to be good for the aches and pains, and they have been helping for about a week, although not taking them away altogether. Going GPs on Monday, these right sided twinges have got me on edge, and I have chronic shoulder pain, which I know is nothing to do with the Arimidex because I have had the shoulder pain for months. I am going to ask him to send me to a liver specialist. Been on another site, a general health forum, and apparently liver hemangionas, even small ones can actually give you pains, and referred shoulder pain. Mine is tiny, only about 10mm and 8 mm, I have the two lesions, and I am sure that is what is the causing the pain.

I was the same the other day, just the simplest of tasks, just picking something up has became one major ache and pain. I am not putting up with it for too long. Anyway I’ve have seen ladies on Arimidex on this site still get secondaries, so there is no guarantee with either Tamoxifen or Arimidex, and if it is a relatively small percentage between the two tablets, then I am tempted to go back to Tamox. Don’t know about you, but I feel quite down on Arimidex, it might just be because I feel so lousy, but I actually feel quite low and depressed.

Anyway best of luck

Julie

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Julie, yes, I was relatively ‘happy’ on Tamoxifen and it does have a good track record.

I am more ‘down’ now than ever, so really want to look at going back on the Tamoxifen.

Good luck with your worries about the liver…I know you’ll feel better once your mind is put at rest.

Love Caz xxx

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Hi, a friend of mines had to be taken off Arimidex as she has arthritis and it was aggravating her joints. It also made her feel very out of sorts to the point she was getting depression and weeping all the time. The oncs took her off it and she is now on Tamoxifen and back at work. She has felt so much better since coming off Arimidex.

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Thanks. There are three of us in the same corridor at work who all had BC within a few months of each each, one of the “older” ladies in her sixties (I say older very carefully as I am no spring chicken myself at 51), she’s been on Arimidex for a while and when I spoke to her about it she said at first she was getting aches and pains, but as she added she does get alot of basic wear and tear type joint pains anyway, so it was hard to tell what what that, and what was the Arimidex . A week later she said actually they are a lot worse than they used to be, but I just assumed it was me getting older. The second colleague was diagnosed just after me and she hasn’t been put on it yet, but also at 54 she hasn’t had a definite menopause yet, she’s at the getting hot flushes stage, but not through it yet, so they’ll probably hold off with her for the time being. It’s interesting to hear all the comments and it certainly gives me hope that I don’t have to necessarily put up with it.

Thanks girls for your helpful comments.

Julie

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Hi Girls
I have been on Arimidex now for over 2 years and it does get better. I still get the aches and pains, at first it used to be the knees and ankles, but now its the shoulder areas and ribs. I think that with all the chemicals that we have had they are bound to have some lasting effect. & you get to the point of not knowing what is causing what? (if that makes sense)
Debbie x

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Hello

julie - I hope you dont mind me posting, was interested to read your experiences. I understand your concern here - you have some niggling aches and pains that are suggestive of liver mets, BUT you have had an MRI that is clear which is fantastic, It does seem highly unlikely that you could actually have problems after a clear MRI But the nature of this is that the concern doesnt just disappear when you have a clear scan. MRIS are not perfect, (but they are far better than ultrasounds) and by the way neither are PET scans - my father had a pet scan that diagnosed lung cancer and he didn’t actually have it!

Just as an idea - are they checking your markers which could give you further comfort ? You could ask your surgeon.

Cally - don’t understand your oncs comments at all! If you have secondaries you get treatment…simple as that,

best wishes
Cathy

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Hi Cathy

Yes they checked my markers in January just before the MRI, the week before, and they were fine.

One of the things that concerns me slightly is that the MRI said there was a cyst and a hemangioma, but that they couldn’t see the two patches originally mentioned on the ultrasound, which I thought was odd. Because surely they were the same two patches. It almost implies that they saw two areas, but not the original two patches, then when I had the second ultrasound a few weeks ago, it says something very similar, that the original 8 mm and 10 mm patches were still there, hadn’t grown any further, but that they couldn’t see the two areas mentioned on MRI. It all sounds very odd, and, almost as if the ultrasound and MRI gave conflicting views. Anyway I’ve got the copies of all of them, and I’m going to GPs on Monday and going to ask to see a Liver Specialist. I’d rather be safe than sorry. I think it is the combined thing of niggles and sharp painy type feelings in the liver region and also right shoulder pain which can be quite nauseating at times, that has me worried, I think if it was one or the other, but having both lots of pain is quite worrying, and to be honest just bloody irritating.

To be honest I am sure if it was secondaries it probably wouldn’t be hurting anyway. I don’t think secondaries tend to hurt anyway until later on and these patches are very tiny, so if they were secondaries I don’t think they would be hurting at this stage anyway. My Mother died with liver cancer and it wasn’t until the later stages a few weeks before she actually died that she started with any sort of major pain. Hemangiomas can be quite troublesome I believe, even though they are a benign condition, sometimes even small ones can cause bother and can cause shoulder pain, so it may be this that is causing the bother, therefore at least seeing a Liver Specialist might answer a few questions.

Julie

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Hi , Caz , Julie , Cathy
thanks for your comments and explanations of Tamoxifen v Arimidex.
You are right in that I feel a bit scared by my oncs comments into not taking action and am assuming my pains are normal at this stage. I finished chemo end of Feb and finshed rads end of May . The aches feel really deep in the breast but my lumpectomy was quite deep to the chest wall so I’ve been told. I at least called and brought forward my mammogram to give me a bit more reassurance . It was scheduled for Sept but I just cant wait that long.

Lots of useful info on this thread !
cally x

(you may have gathered I am going through a bit of a wobble at the moment and am suffering ‘health anxiety’ according to a counsellor I saw last week)

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Cally

I would say that although I think your Onc comments were a bit daft, I also think that the pains and aches will just be the healing process. I’m one year down from an abdominal hysterectomy and I still get pains and aches from the scar line and inside, nothing I can’t deal with, but had it been the site of cancer and not just the site of a normal abdo hysterectomy done because of fibroids, I would have automatically thought it was a recurrence of some sort, if you get what I mean. Three years on from my reconstruction I still ache and hurt from time to time, surgery always knocks the body for a long time afterwards, so I am sure it is that. You’re entitled to a wobble, I think you have them, then things settle again for a few months or a year, then you’ll have another one, it’s natural, well at least it is with me ha ha. Always wobbling!!

Jx

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Hi Julie
thanks . I didnt really think I was a worrier before bc but feel like I am being made to feel like one now . I may just try and not do normal things for a while and be a bit easier on my body and see how it goes . Until then I’ll keepn to my counsellors advice and practise deep calm breathing exercies and visualise the sea lapping against the shore… birds tweeting etc etc :wink:

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All if all that fails, get sloshed. It usually works for me !!!

J x

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Hi

Been to GP’s this morning and he is sending me to see a Liver Specialist. Also he noticed something on MRI that I hadn’t, or at least something I hadn’t taken on board. It mentions that my pancreatic duct is dilated and tortuous, which could be giving me the pain. So anyway hopefully should be getting an appointment in the next few weeks.

Julie

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HI Julie , well took your advice and got sloshed in fact I had a weekend Amy Winehouse would have baulked at ! A 40th with 13 girls , lunch next day in west end , bit of shopping saw james Blunt in concert and hosted a barbeque. Think I needed it , actually it doesnt happen often that I have back to back social activities …but I sort of missed my kids :wink:

Well I have my mammogram today and I do feel a bit stronger mentally

after having a bit of counselling . I cant worry about the what ifs got to live in the here and now

Good to see they may be getting closer to the problem with you.

cally x