Liver and pancreas scans - mets?

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Hi - apologies for the length of this, but really do need some help…short history, dx idc, 2 cm stage and grade 2, with associated DCIS, Jan 2003, The number 2 is obviously not my lucky number! WLE and total axillary removal. 6 x FEC chemo and 25 rads.
Had 5 yrly review Feb 2008 with bc surgeon, no mammo or u/s as we only get 2 yrly ones at my hospital. NED!! and thrilled, although surgeon said he wants to see me next Feb. Stopped Arimidex 6 weeks ago due to severe hip,feet and hand pain, and much improved. Waiting to see new Oncologist for alternative AI’s or tamoxifen.

Some 4 weeks ago I suddenly developed severe nausea, total loss of appetite (can barely manage a fruit yoghurt and a banana some days), weight loss (some 12 lbs in 3 weeks) bloating and steatorrhea. As I have had Crohn’s for 38 yrs, I thought the problem may be gastro related and saw my GP. He prescribed omeprazole, but no better. Bit the bullet this Tuesday and rang my Inflammatory Bowel nurse who saw my gastro within an hour and had an urgent appt for me on Wednesday morning. He is very concerned at my symptoms, especially the drastic weight loss and nausea (I now only weigh 100 lbs) and has ordered an endoscopy of the upper GI tract under sedation on 9th July, plus a CT scan of pelvis,abdomen, liver and pancreas on 26th June. Meantime he has doubled the omeprazole and prescribed 8 domperidone tablets daily.

I know with certainty that this is not a Crohn’s flare, having had many over the years because my temperature is not raised and I don’t feel “ill”, just nauseated, with pain and bloating if I eat anything. My bowel movements have also changed drastically, to near constipation rather than the usual diarrhea.I have monthly blood tests as I inject methotrexate weekly, and everything seems fine in that area, including full liver blood panel, except for a slightly raised c-reactine protein level. Oh, that was hilarious - I had my recent blood test print out and I asked the gastro: “What does a score of 10 mean?” He looked at me and said: “One lower than 11, one higher than 9!” and we all laughed. Quite defused a tense consultation.

It just struck me when the booking clerk for the CT scan rang this morning and said the scan is to include my liver and pancreas, which are not normally affected by Crohn’s, that the problem may be in one or both those areas. The only time I have had a full scan was after the 2 bc surgeries, when starting chemo, and it was clear.

Obviously a tad concerned now about liver or pancreatic mets and would appreciate any advice on symptoms for those unlucky ladies who have liver mets. I have not heard of bc metastasing to the pancreas, but what scares me is that I met a Scottish lady in 2002, , living in the US, who had just been dx with Crohn’s on the US Crohn’s & Colitis Foundation official support site and she pm’d me for further information. We became cyber soul buddies, emailing each other twice a week, with the occasional phone call. A couple of months after we met, I was dx with bc, she with pancreatic cancer. Sadly, she died at 37 yrs a year ago, leaving two young children. I was devastated, as we had planned to meet up here in Cornwall last summer when she was planning to visit her family in Scotland.

My gastro, at the consultation on Wednesday (a long 45 min one) did not mention either my liver or pancreas so I was very surprised when the CT clerk mentioned it this morning.

I could have got this all wrong, as an MRI on my lower abdomen last Nov showed 2 strictures in my small intestine due to past inflammation causing adhesions, but I was asymptomatic then, and nothing was done. Gastro did say if the strictures have become thicker, I am looking at surgery. I am desperately hoping my current problems are due to chronic Crohn’s and not bc mets.

Does anyone have any advice/experience that can help me?

Many thanks,
Liz.

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Dear Liz

So very sorry to read this. You must be feeling so scared right now. In general terms I know that nausea and weight loss can be a sign of liver mets, also shoulder pain if swollen liver pressing on nerves (apparently.) But both could be symptom of many other things.

A CT of your thorax and abdomen would be bound to include liver and pancreas.

Really hope that your symptoms are Crohns related and can be controlled.

Fingers crossed for your scans.

best wishes

Jane

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None at all Liz just wanted to say am thinking of you at this time. I bet you never hoped so hard before for your probs to be related to your crohns even if it meant surgery. I hope you will be more comfortable with the meds and that you have some answers soon. The waiting can be so hard.

Dawn
xxx

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Hi Liz
sorry to hear you are having problems hope it is crohns related. In 2004 I was about to be given the all clear I mentioned I was feeling really tired Dr said it was age related I knew it wasnt just had one of those gut feeling something was wrong. I hadnt lost any weight but did have a bit of a swelling near my ribcage never felt sick but did feel really drunk after one glass of wine so I was a very cheap night out!
Do you go to Royal Cornwall hospital? I am under Duncan Wheatley. He is a really good onc it due to him backing me that I got avastin and fingers crossed it is working for me.

Love Debsxxx

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Hi Liz

It sounds like you’re having a really tough time. If you would like to talk to someone about your fears and concerns whilst you are undergoing the scans please don’t hesitate to give the BCC helpline a call as the staff will be able to offer you a ‘listening ear’, aswell as support and advice if needed.
The number to call is 0808 800 6000 and the lines are open Monday - Friday, 9am - 5pm and Saturday, 9am - 2pm.

I hope this is helpful.

Kind regards
Sam

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Hi Liz

I was diagnosed last June with liver mets but had no particular symptoms (discovered through raised blood tumour markers and then a scan). As Jane says, nausea and weight loss can be symptoms but certainly most of the ladies I’ve talked to with liver mets, have either not had any symptoms at all or have become jaundiced (depending on where the mets are). With hindsight now, I know I had (and still have) some “twinges” in my liver for some time before the dx - put it down initially to other things.

And as Jane has pointed out, a CT scan of your abdomen and thorax would automatically cover the liver and pancreas area. Could it be that it is the way of describing the type of scan, rather than the consultant feeling there is a problem with those 2 organs (particularly as he didn’t mention it to you)?

Waiting for results whilst knowing with certainty that something is wrong (but not what), is so stressful. Really hope that your current problems are linked to the Crohn’s (and the strictures) and are not bc mets. So fingers crossed for those scans - let us know how you get on.

Kay x

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Hi all, although I was very hesitant at posting on the secondaries site, I knew I could get the best advice possible…thank you all so much. I am usually the one posting, particularly as I have recently been appointed, and indeed, honoured as the first Community Leader for Crohn’s on the US Medhelp site. I don’t know anyone with concurrent bc and Crohn’s, so it is difficult as to where to turn for help…obviously my first call is bcc.uk.

Jane…I can always, but always, rely on you for such temperate advice …you never scare anyone, just tell it like it is from a dispassionate viewpoint, and I so value your input. You have calmed me down with dreadful thoughts of mets.

Dawnhc - I have also always valued reading your posts and how valiant you are in dealing with your problems. I guess I have always thought myself lucky in having Crohn’s for 38 yrs, with so many rectal haemorrhages requiring IV steroids, blood transfusions etc, and not had any resections, that I am now at ease with the strictures. The methotrexate seems to have brought the inflammatory problem under control, but strictures are something else again, and not a problem I have ever had to deal with. I googled small intestinal strictures, and luckily, in the past 2-3 years there is an alternative to resections (which makes the diarrhea worse as my first gastro told me 38 yrs ago, and advised to always avoid surgeons if I can). It is a procedure called “strictureplasty”, where they cut the narrowed parts of the small intestine, widen them, and sew them back together.

debs in cornwall - I am in south east Cornwall (between Millbrook and Kingsand) so am treated at Derriford in Plymouth, although ironically enough, the 3 yrly mammo that found my non palpable tumour was done at a travelling unit outside the library in Torpoint but was looked at Treliske hospital in Truro, and first I knew of any problem was a recall letter to go to Derriford. I have learned not to fuss about my health problems unless I feel something is really wrong and usually leave it too late until I need hospitalisation. This time, I feel in my bones, and more importantly my mind, that somethind is seriously wrong. The only time I have not been able to eat was when I had FEC and had 4 months on Fortijuice drinks, and daily dexamethesone.

Sam at bcc…many thanks for your support. I am not scared of the scans per se, had them all before, even endoscopy without sedation some 30 yrs ago…I am just worried as to why my gastro has ordered CT scan of my liver and pancreas, when he did not mention these areas at our long consultation. Perhaps he was being kind, and didn’t want to worry me. During his training before becoming a consultant, he was an SHO at the Royal Marsden, so does know something about cancer, although he did say when I was dx with bc, he could not intervene with my Crohn’s problems and stopping methotrexate, as the Oncologist ordered (not advised!) as bc is life threatening and Crohn’s is not. Well, I beg to differ, I could die of a burst intestine now, with current strictures. I just wish my doctors could get together when presented with a patient with serious concurrent medical problems, sort it out, and get peer reviews. I have long felt I am in the wilderness, coping with two serious diseases, but can’t get the doctors together to sort it out. Thanks for your time.

Kay - your post was like deja vu …last week we took a recently widowed friend to Bristol airport to recce the golf lodges she had booked overnight for 11 of us going to Spain in late August to celebrate my husband’s 80th birthday, staying at a friend’s villa. We stopped at a pub for a carvery lunch, I ate one potato, one small slice of roast pork…and my husband said: “Liz, your skin looks yellow!”…Told him he must be seeing things!! My lovely friend made no comment.I did a dinner party last week for her and some friends who own a holiday apt here at the Fort, arranged some 4 weeks ago, and I truly don’t know how I got through not just the prep of appetisers and a four course meal, but only drank ginger ale! My oh so patient and caring husband came to the rescue and did all the veggies, and he and the only male friend helped me between courses and stashed the dishwasher. I am not going to do any entertaining until I get well again. He is taking me out for lunch this coming Sunday to a lovely hotel along the cliffs of Whitsand Bay and invited my widowed friend, her father of 90 yrs old, mother of 89 yrs, and hope the domperidone will allow me to eat at least some food.

Thank you all, most sincerely,for your input, for listening, caring and sharing. I so treasure you all.

Liz.

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Liz

This is Sarah who used to post as Soda, you will remember the lovely time my children and I, and Bronwen, had at your place a few years ago. I rarely visit this site these days (happy to report I am well, 4 yrs on). I occasionally browse, and today, came upon your posting.Our children still talk of their visit to “the Fort”, you and Ted were so hospitable- the cakes were ace!
I do hope you’ll find an answer to your current health problems, and that it will be easily sorted. Lots of love to Ted. We will be at Penlee Point in August, can we call on you???

Sarah, David, Anna & Owen

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Hi Liz

Having looked at your post and knowing very little about the symptoms of secondary BC, my first thoughts were adhesions to possibly the small intestine, especially if a recent MRI showed strictures to this area. A CT scan of all the Upper GI and all associated organs is normal and probably a precaution. I would think related to Crohns rather than BC

Cathy
x.

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Wow - you ladies are fantastic - just being to write down my problems rather than bother friends, who don’t know the first thing about bc and certainly not Crohn’s, has been such a relief.

Cathy, I think you are most probably right about adhesions causing the strictures, I just got a bit scared when the CT clerk told me the scan would include my liver and pancreas. I am sure if there was anything wrong with my liver the monthly LFT tests would have shown something up…it is the pancreas that scares me, particularly in light of my late friend Heather, who was first dx with Crohn’s, then got cancer of the pancreas. My father died at 59 yrs of colon cancer, and my gastro has talked to me a number of times about being vigilant with my symptoms as Crohn’s patients are more susceptible to colon cancer than the general population. Pancreatitis or indeed pancreatic cancer had never occurred to me. I am hopeful the problems will turn out to be the strictures and can be ameliorated temporarily by strictureoplasty (sp?) rather than resection. My gastro did note on the forms I had to take to various x-ray depts “Complex Crohn’s and breast cancer”, so guess the radiologist will take both diseases in context when reviewing the scans. Or am I shooting for the moon? I don’t often get “down”, but this has really thrown me for a loop.

Sarah - how wonderful to hear from you, every cloud does indeed have a silver lining. Ted and I have often thought about you and Anna and Owen - they must have grown up significantly since we met them. Beautiful, well mannered and inquisitive children who are a credit to you and David. So pleased to hear you are NED and doing well, particularly at such a young age.

We will be delighted for you to spend a day with us at the Fort in August - the pool is still heated and I know the children will enjoy it - they may even be old enough to swim in the harbour? The tennis courts have been resurfaced recently if they are into tennis. We are going to southern Spain (where we lived for 8 years) on 17th August, returning 26th, to celebrate Ted’s 80th birthday with 9 friends, some coming from the USA whom we met upon retirement in Spain, all having repatriated through health problems, as we did. We will be happy to have you for lunch - Ted makes brilliant home made pizzas, and gets children of second home owner friends here to stretch out the dough then put their own choice of toppings on - perhaps the kids would enjoy this? Could you pm me with your dates to visit your s-in-law and we’ll make a firm date? Got quite a repertoire of cakes now, as the studio apt has been fully booked for the last 2 years, even in the winter, which is spectacular with force 10-12 gale force winds. I won the Somerfield recipe of the month competition in Feb, and was one of the 5 finalists for the Good Housekeeping Great British Cake recipe competition last October, invited to London for the cook-off, 3 days all expenses paid, but couldn’t go as I was doing a changeover for another holiday home owner in exchange for her doing mine when I went to my nephew’s wedding. Only day of the year I couldn’t go to London!! Very miffed I was.

My sincere and grateful thanks to all who have posted and helped me enormously. I’ll post again when I get some results of the CT scan and endoscopy. CT scan 26 June, Endoscopy 9 July, so hope I will be able to go to Spain to celebrate my husband’s 80th. He is not at all well, and now has suspected CIDP, a rare neurological condition called Chronic Inflammatory Demyelinating Polyneuropathy, an auto-immune condition, like my Crohn’s, but affects the muscles. We are getting a private appt, hopefully next week, to see a Professor of Neurology at the new Peninsular Medical School in Plymouth who is a world renowned expert in this rare disease. Hope springs eternal…

Liz.

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Just a little addendum here… I once was concerned about hospital notes I read stating ‘abdominal mets’ and queried this with a nurse, only to be reminded that your liver IS in your abdomen (I have liver mets) thus quelling concerns I had about further spread. So an abdominal CT scan will include your liver and pancreas, 'coz that is where they are situated.

Best of luck to you and your husband and hope both your fears are unfounded.

Jenny
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