Had another MRI on the liver last Friday, a year to the day since the last when I finally got a diagnosis (benign) of the things in my liver.
I’ve got pain now, just under the ribs, and I’m scared stiff this time. The Onc examined me and said the liver wasn’t bigger, but can you have nasties without it getting bigger or sounding different on examination? She thought it could be costeo-condritis?
However what has me really worried is that it is sore when I’m sitting upright at a computer or at the table and easier if I slump or lean to the other side. Some of the girls with liver secondaries mentioned this type of pain.
I know it’s not long to wait until Thursday (appointment is at high noon!), but I’m really panicking now. I’m counting hiccoughs and wondering whether I really have the odd bout of nausea or if it’s nerve driven.
HELP!!!
OH is very understanding, but most of my friends don’t get in and I think they are thinking I’ve got hypochondria - maybe I have!
Hello, Alloway.
Good luck with your appointment tomorrow.
I have just seen the doctor myself and I go for a liver scan as soon as the appointment comes through. I have had high Liver Function tests. This waiting is the worst first for the appointment and then for the results.
Let us know how your appointment goes tomorrow. I am thinking of you.
Christiane x
Hi Alloway
Going through a very similar thing. Had an ultrasound in January which showed two small spots on my liver, and the scan said “therefore metastases cannot be excluded”. After 3 weeks of absolute hysterics, tumour markers which were fine, and ending up on Diazepam as I was so stressed, they eventually arranged an MRI. There was some discussion of doing a CT guided liver biopsy, which apparently would be quite invasive and if it was mets they could spread along the line of where the biopsy had been taken, so they eventually opted for MRI. Anyway MRI was supposedly fine and the two spots are apparently a cyst and a hemangioma. At the time I was also having right sided shoulder pain. However all was well and I was obviously over the moon, then over the last few weeks I have been getting sharp little niggly twinges under the right rib cage area and shoulder pain came back with a vengence, but has settled over the last few days again. Went to my GPs last week, took copies of my ultrasound, my MRI and my latest repeat ultrasound done a few weeks ago. He spotted something on the MRI about the pancreatic duct being dilated and tortuous, and said this could be causing my pain. He is referring me to a Liver Specialist. Both he and a Surgeon I saw yesterday as part of my original follow up from the ultrasound both examined and felt and pressed down on the area, and said there is no swelling nor can they feel anything, but now I feel as if I am back in the same position.
In a way I don’t think it is liver mets, but then again when the twinges and aches start up my mind is working overtime. My mum died with liver cancer, that they thought had come from the ovaries or bowel, so I am paranoid enough to start with. All I can do is wait and see.
Good luck for your appointment, and lets hope we both get the reassurance we need.
Julie
Hi Julie,
Thanks for replying. I have Focal Nodular Hyperplasia and I wonder if the liver is reacting to the change to Arimidex in January and the 6 months of Cabimazole for the Overactive Thyroid. My Onc is not interested in anything unless it’s Cancer, so like you, if it’s not Mets tomorrow, I think I’m going to go back to my GP and get referred to a liver specialist. I haven’t seen one at all.
I am very worried because, like yours, this pain is different.
I’ll let you know and hope that you too get a final reassuring answer. Would you mind telling me where you are being treated?
Hi
Funny you should mention about the Arimidex because contraindications for Arimidex say you shouldn’t take if you have any problems with your liver, can’t remember the exact wording on the leaflet. I bet it could be that causing your problems. I stopped taking Arimidex a week or more ago, and put myself back on Tamoxifen (probably will get wrong off the Breast Surgeon), but I had only been on Arimidex for about 7 - 8 weeks prior to this, and was getting terrible joint pain all over, especially ankles, elbows, and my shoulder pain seemed to be worse, so I thought I would see how I fared without them. Since coming off the Arimidex my right sided feeling, although still there, doesn’t feel quite so irritating, and shoulder pain definitely subsided. I have certainly felt slightly better over the last couple of days, so I am curious to see if this continues over the next week or so and is actually the Arimidex causing the problems. I was going to ask my GP to refer me to a liver specialist anyway, but as soon as he spotted the thing about the pancreatic duct he said straight away that he was referring me to a Liver Specialist. I am sure it is going to turn out to be nothing, my bc was Grade 2 infiltrating lobular, no node involvement, and I had both breasts off and reconstruction. Didn’t have any chemo or rads as they said the radical surgery combined with the Grade and no node involvement meant a fairly good prognosis, but to be honest I don’t think you can ever rest easy, can you, with this disease.
Keep me informed, and I’ll let you know what happens when I get my referral. I haven’t had my letter yet, but should hear something in the next week or so.
Julie
hi Alloway
thinking of you today let us know how you get on.
Love Rx
Good news!
Liver unchanged from last year - no mets. As to the pain, Onc stated that as I had had a clear bone scan in April, she wouldn’t do another in less than 6 months. She thinks the pain is muscular/skeletal and is going to refer me for an Orthopedic MRI (?). I presume she’s thinking arthritis, as I Googled Costochondritis and apparently it’s a form of arthritis.
Imagine - being excited and pleased because it’s arthritis!!!
Thanks ladies for your support and help - it means a lot.
Julie, good luck with your appointment and please let me know how you get on.
Alloway
Hi Alloway
So pleased that you’ve had the all clear. Thank goodness. I know what you mean about being excited about having arthritis, ha ha, well it’s certainly the lesser of two evils, so I can see why you would be pleased.
Anyway will let you know what happens.
Julie
Hi A
yeah sort of pathetic being relieved it could be arthritis isnt it. I suppose we surmise we dont die of that do we?
I had an MRI for lower back pain about a year ago and i had a torn tendon, dont know how i got it except maybe at the gym when i tried to exercise.
I think once we are DX with this disease we will then worry about pain and think everything is cancer related.
Dont you feel a fraud though when you are told ‘its all clear’ and you come on here and read about others who have had ‘bad’ news.
Life is just complicated once Dx with this disease isnt it? I hate it.
Rx
Hi Alloway
I can really understand what you must be feeling. A little tale for you!
Well done on the clear bone scan 
I had recon last year, in July. I had the Beckers implants, two of them. During the op I went into respitary arrest ended up in ICU. Had follow up x-rays, doc still wasn’t happy so sent me for another x-ray. A week after surgery they thought I had a PE, so back in again! Another xray and arterial bloods ( I hate having arterial bloods done!) They then said the chemo had damaged my heart, but shortly after said it was fine. Ended up going for CT scan on lungs etc. It came back all clear wey hey!!!
But…there is always a but isn’t there…there appeared to be a mass on my liver that measured 14 cm! Immediately I thought I was a gonna, My mum had liver cancer, and I knew what she went through…anyway…
Got sent for ultra sound and possible biopsy…good news time!!! The doc doing the ultra sound was happy the mass was a cyst…but…again…it didn’t measure 14 cm…it measured 20 x14 cm!!! As you can imagine I was relieved and shocked at the same time…but happy it was benign!!! And all just before Xmas.
I’m supposed to go in and have the ports out, but am a little too scared at the mo to have another anaesthetic.
Lots of love to everyone
Jeni x
To Jeni
You have a similar story to me. My Mum died with liver cancer as well, so like you was terrified when I had my scare. Although I’ve been given the all clear with my MRI, which said cyst and hemangioma, I am still getting twinges and sharp pains under the right rib cage, so seeing a liver specialist later in the month. I was rushed in to A & E with a suspected PE before my surgery, but it turned out not to be. Not really worried, just want to get to the bottom of what it is. GP thinks it could be something to do with the pancreas.
Hi Julie
It’s like its one thing after another! I get twinges, but nothing too drastic. If your bloods are clear, your LFT’s etc that’s a good sign/start. It could just be things settling down.
Let us know how you get on.
Lots of love
Jeni x
Will do, like I say not really worried in that way though. When I first had the liver scare, an ultrasound sound had come back with “liver metatases cannot be excluded” I completely freaked. I saw it, I work at the same hospital, I was absolutely on the ceiling, as you can imagine, but my tumour markers were fine, then after discussion at the MDT they decided instead of going for a CT guided liver biopsy which they thought would be too invasive, that an MRI would be the best thing, and luckily that was okay. I was on Diazepam for 3 weeks. Not that I panicked or anything !!! ha ha.
GP noticed it said something on MRI about pancreatic duct being dilated and that is what could be causing the twinges. I think it is quite a common thing, but I think it is something you live with, don’t you, once you had this flaming disease, you’ve always got the worry of it coming back.
Anyway lots of love
Julie x
Went to see the Liver Specialist yesterday. He examined me, had a long chat. He is not unduly worried, felt the liver felt fine, no swelling or enlargement he said. Went through all the things the pains could possibly be etc, but the long and the short of it is he is sending me for a CT scan just purely so the whole query over the pancreas can be “put to bed”. I had bloods taken, and am going back 2 months time, after the results of the CT, but I am genuinely not worried. Been feeling great the last 2 or 3 weeks.
Julie