Can idc metastasise to the GI tract?

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Dx idc Jan 2003, 2 cm tumour, stage & grade 2, ER+, HER2-. Lumpectomy and total axillary removal, 3/18 nodes positive. 25 rads. Currently osteopenic, taking alendronic acid and calcichew/Vit.D3. Stopped Arimidex 3 months ago due to severe bone pains (hips,hands and feet), pain now gone. Seeing GP Thursday to discuss Onc’s letter suggesting either aromasin or letrozole.

Crohn’s disease 38 yrs, 30 yrs on prednisone, now on weekly injections methotrexate.

Recent gastro problems:
upper right quadrant and lower right hand lower abdominal pain.
bloating, even after a yoghurt.
Weight loss, 14 lbs in last 4 weeks.
nausea
steatorrhea
no appetite, barely eating.

Saw gastro 11 June, had CT scan of liver,pancreas and lower,abdomen, 26 June, no results yet. Having upper GI endoscopy tomorrow. This does not feel at all like a Crohn’s flare, as my diarrhea has changed to constipation. Hoping it is gall stones or the two strictures in my small intestine causing the problems. However, I am concerned had never heard of it, but there is a Mayo Clinic study paper on it. Prognosis really bad - 18-24 months.

Does anyone know anything about this happening in the UK? I never seem to “present” normally, had no pain during the 9 months before dx of Crohn’s and went down to 5 stones. Bc was non palpable tumour, found on 3 yrly mammo.

Can anyone help or give advice please?
Liz.

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Dear Liz

I’m so sorry that you are having such a worrying time. I can’t help you with your symptoms but just wanted to send you a big hug and hope that your problems are due to something other than metastasis. I had a lot of problems with my stomach around 5 years ago (well before my diagnosis of BC). My consultant thought I had crohns disease but after huge doses of antibiotics and a diet free of wheat and dairy it improved immensely. since I’ve had chemo and steroids for breast cancer, my digestive systems has changed and I’m constantly constipated which is something I’ve never suffered from before.

It’s so easy to read stuff on the internet that scares the s******t out of you and there are so many explanations for the symptoms you have so please try and put the worst out of your mind - hard I know but that is why surfing the net is so dangerous.

Anyway thinking of you and wishing you all the best.
Ruby xxxx

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HI Liz

Can’t advise really -I have heard of mets to the omentum and to the ovaries, havent heard of mets to the GI tract, but that doesn’t really reassure does it ? Can you push for results of your CT- they should have by now ! I really hope you can get those soon to put your mind to rest,

take care
cathy

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Hi Ruby…

thank you so much for posting…I was in floods of tears this morning, first time since I was dx with bc 5 years ago, and my lovely almost 80 yrs old husband is very upset…but he is taking me for the endoscopy tomorrow (some 6 hours at the hospital and 2 hours each way travelling!) and hopefully my gastro will come to see me in recovery and let me know if he has found anything to cause the problems. Hopefully he may have the results of the recent CT scan of my liver and pancreas. I know there is something seriously wrong, as I rang my IBD nurse after my GP prescribed ulcer meds…he is lovely, but useless…she spoke to my gastro within an hour and I was seen next morning by him in clinic. He was visibly shocked by my weight loss, and symptoms, and immediately wrote out orders for various scans. He didn’t even attempt to discuss what may be the problem, as he hasn’t a crystal ball, but he has talked to me many times in the past about my high risk of colon cancer as my Dad died of this at 59 yrs, and with Crohn’s, Dad’s colon cancer, and now my breast cancer, he was obviously worried. He normally blinds me with science at our regular consultations, but this time, he didn’t say anything.

Well, he has a great sense of humour and did make my hubby and I laugh when I brought my recent blood tests and he asked me what my c-reactive protein level was… I looked at the print out, and it said 10. I asked him what it meant and he replied: “One less than 11, Liz, and one more than 9!” We all cracked up and it diffused a difficult rather tense consultation. I have absolute faith in him… he worked in Africa in a leper colony and then did Aids/HIV work at St. George’s Hospital in London before deciding that gastroenterolgy was the most exciting field to be in - whatever turns you on, eh? .

My mind is in absolute overdrive, couldn’t sleep last night turning over all the possibilities and was up at 5.30 am…got problems getting to see an Onc too…my GP requested “advice” not a referral as I asked…the new Onc had sent 2 letters to my GP about an alternative to Arimidex and nobody called me. Got a bit stroppy this morning at the GP’s surgery, receptionist apologised and said they screwed u…got an appt with a locum female Gp Thursday to sort out some new meds.

Just glad I am so proactive, but our NHS is in an abysmal state.

Ruby, thanks again for your input…

Liz.

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Ahh Liz - I hate to think of you feeling so bad and I can imagine your mind is playing overtime. I’m not surprised you’ve lost loads of weight as you’re not eating much, not sleeping much and the worry causes it to drop too. It’s also really hard when you have to cope with your other half’s emotions too. The main thing is that things are moving now. I’m really sorry to hear that things haven’t gone altogether smoothly with your referral though - it really shouldn’t be like that. I have to say that as far as my treatment has gone - it is as good as it could possibly be. My hospital seem to have it all sussed and the communication between the different teams is wonderful. If I ever have any problems, I don’t go through my GP, just straight to oncologist and in my case also haematologist. Like you, I’m not an altogether straightforward case as I still have (9 months after chemo) a very low white blood count such that if I get infections I have to go into hospital to have intravenous antibiotics and nobody seems to know why but I’m feeling well so that’s the main thing.

Anyway wishing you the best of luck for tomorrow and Thursday (hope they sedate you for the endoscopy) and also with your scan results and if you feel like it, please do come back and let me know how you get on. Thinking of you.
Ruby xxx

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Hello Liz

Good luck for tomorrow. Hope you manage to get some sleep tonight.

Take care and let us know what happens.
Anthi x

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Hi Cathy… lovely to hear from you…did your friend get my email about her daughter’s Crohn’s? I may be confusing you with another Cathy…can’t seem to get my brain in order these days.

I had a hysterectomy at 40 yrs old…now 64 yrs…too many d and c’s to count with fibroids…no gynae would sort it out because my colon was attached to my uterus with adhesions…
eventually I found a private gynae whose mother had Crohn’s and he said “no problem” I went into a private nursing home, now a hospital, for a round figure of £1,900, 10 days, but was out in 5. No more gynae problems.But, I did find out why I could not have children…a bi-cornuate womb… Ironic how life works out. It has taught me to live without children, which I dearly wanted…IVF could not sort it out.

Before I get sedated tomorrow afternoon am going to ask my gorgeous gastro if he has had the results of the CT scan on my liver,pancreas and pelvis. He will not bullshit me, and hope my hubby can come into post-op to remember what he said. I can hardly rembember what I did this morning.

Thank you ladies so much for helping me out…much appreciated.

Liz.

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Hi Liz - Nothing helpful whatsoever that I can offer you by way of advice, but I just wanted to say how very sorry I am to read about your current troubles. It must be awful to feel so unwell and to just not know what is going on. Hopefully tomorrow will bring with it some answers, and of course I am keeping everything crossed for you that they can get to the cause of this and treat it. You always write such interesting and helpful postings and with such good humour and fortitude. I am sure there are lots of us who will be thinking of you, and please let us know how you get on. Take care of yourselves tomorrow - it will seem like a long day, but hopefully you will get some results and see the people you need to see. Will be thinking of you. Big hug. Love Sarah

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Hi my lovely, caring cyber bc friends…

Thought I would update you on yesterday’s endoscopy…

I saw my gastro in the operating room, and before being sedated, asked him if bc could metastasise to the GI tract…he said he has not personally seen it (I am his only patient with bc and Crohn’s), but he has read studies on it, although very rare.

I also asked if he had the results of my CT scan 2 weeks ago and I said: “Please tell me you found gall stones!” - he laughed and said, “No, not one, but it did show significant inflammation around the terminal ileum.” Not at all what I expected, as I have been on methotrexate chemo for 7 years now, although changed this year from oral tablets, 25 mg to weekly injections 12.5 mg. Perhaps the dose isn’t high enough?

I didn’t see him in the recovery room as he had a big list to do, but the nurse did give me a printed copy of his endoscopy report - bit like reading Chinese with all the acronyms. Basically he found oseophagitis (suspected Barrett’s oesophagus), did some biopsies of the inflamed tissue and this is being sent for histology report. I see him in clinic 23rd July for the results and hopefully a treatment plan.

I am a tad concerned about Barrett’s Oesophagus, if that is confirmed, as it can be a pre-cancerous condition, much like DCIS is to invasive bc. In any event, there is an inflammatory condition there that needs treatment…don’t know if it will be surgery or meds, so playing the waiting game again. Jeez, it feels like deja vu all over again. I think having had cancer once, we are always afraid it will return somewhere in the body and I just cannot believe I could be so unlucky to have it in my GI tract. I am normally an optimist, but this recent bout of ill health has made me into somewhat of a pessimist.

Ironically, I am going to the AGM of our local Crohn’s & Colitis Assoc meeting this evening at the hospital, and my gastro is one of the speakers. Not appropriate methinks to talk about my personal condition there, but will be interesting to hear his comments on latest research and treatments.

On the bc front, I saw a locum female GP this morning regarding the two letters sent by a new Oncologist, that I knew nothing about, in regards to changing from Arimidex to another AI. Locum said I should make a formal complaint to the Practice Manager about the receptionists not contacting me as the letters were “flagged” on the computer for me to have an appt with my regular GP -who is off immersing himself in the mysteries of ancient Egypt for 3 weeks! Talked to hubby and we think the apology from one of the receptionist is sufficient.
The Onc suggested aromasin and I got a repeat 2 month prescription. The local pharmacist (tiny village so lucky to have a pharmacy) had never heard of it so has ordered it today. I suddently thought this morning that perhaps the bisphosphonate I take, alendronic acid, may have caused the oesophagus problem and mentioned it to the locum. She said to continue taking it as I am osteopenic and have only been taking alendronate for 18 months and haven’t yet got the protection for my bones that I need. The two fractures in my feet last summer showed I do have bone density loss, also evidenced by DEXA scans.

I truly thought I was doing so well, having come 5 yrs since bc dx and pronounced NED in February this year by my bc surgeon. This has thrown me for a loop, but guess I am mentally stronger than I thought I was.

Your responses have been so much appreciated.

Liz

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Liz - what a time for you - but it does sound like you are in good hands (save for the GP’s receptionist). Will be thinking of you.

Geraldine

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Hi Liz
oh my God how have I missed this thread? Sorry I have not been in touch before.
Take care and try not to panic fingers crossed there is nothing sinister as they like to say.

Love Debsxxx

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Flying high tonight - on orange juice…desperately want a glass of white wine.

What a watershed of an evening…hubby had to drive me to the foot ferry to Plymouth for the NACC meeting at Derriford Hospital… taxi wasn’t there to meet me, but another taxi from the same firm was there - driver was Bulgarian and hardly spoke a word of English…I said: “who are you waiting for?”…“John”, perhaps he said God?. He rang the taxi company 3 times, was not allowed to speak to them…why?..so I spoke to them. “It is on the way”…3rd time I got really stroppy and the despatcher said it is in the next street to the ferry hard-standing. Ferry had long gone and back to Cremyll other side of the Tamar river…wish I could walk on water! Whew…the young guy who eventually came, Czech, apologised, said he would get me to the hospital in 13 minutes (it normally takes 25…and I thought, oh no, we are going to get stopped for speeding or have an accident.) Young, gorgeous like a film star, 25 yrs old, went to high school in Atlanta, Georgia and now in his 3rd yr of a degree in History/politics and international relations…snobby types would call it PPE I think. He spoke better English than I do!
His father is a vascular surgeon in Czech Republic (I got an update on the history of the Czechs and Slovanians), mother a dentist. realise now I cannot say “Czechoslavica”. He told me he wants to be independent and is funding his studies (and going on to do a Master’s here in Plymouth) through taxi driving!! I was so impressed by this young man nearly invited him to dinner over the weekend - my husband would loved this very articulate and intelligent young man.

AGM of NACC was over in 10 minutes…then my gastro gave a slide show of the new anti-TNF drugs, and some very scientific stuff about familial genetics, new biologic therapies etc that I guess none of us understood. Attendance was pathetic, 19 participants, most of them with partners or friends…me on my own, but the new Chairman took me under her wing and made me sit next to a mother of a 22 yr old recently dx with Ulcerative Colitis.

My gastro came up to me at the tea/coffee/biscuits get together after the meeting and said he wanted to see me in the recovery room yesterday, but I had gone. Told him the supervising nurse said he had a long list and I was free to go. He was upset and said he will deal with that nurse.
He said I have some serious decisions to make when I see him in clinic 23rd July. He wants to review the recent Catscan of my pancreas with the radiologist, have another MRI scan done of my two strictures and look at my doubling my methotrexate immediately. Said he would call me tomorrow, but we are out all day, hubby has his new car in for service, taking a newly widowed friend for lunch then the cinema so he said he will call me over the weekend. Gosh, feels like I am having private medical treatment!

I told him I have 3 weeks after our consultation before 11 of us go to Spain (back down memory lane when we retired there for 8 years, but had to come home because of my Crohn’s problems) - a very close friend has offered us their 8 bed 5 bathroom villa, near where we lived, to celebrate my husband’s 80th birthday…even got friends from America, that we met in Spain, at our studio apt for 10 days before going to Spain…I cannot not go! My friend has organised a stupendous celebration for Ted, a surprise for him, with flamenco dancers and guitarists coming to their villa, and has made many restaurant reservations.

My gastro said I need to put some weight on…tout de suite…and is organising Fortijuice to be delivered from the hospital for me, as I can’t eat without severe pain and bloating. He said he will do his best to get me well enough to travel to Spain and be able to eat. In this case, pigs don’t fly…I know he will sort me out. No point in even thinking about private medical insurance but we both have the new EU plastic card, so if push comes to shove, I will be okay. Thankfully, we have always saved, so know I can be repatriated privately, if necessary.

the new “Chair” - got to be pc correct these days, drove me home tonight with their new female Treasurer,and has inveigled me to be co-opted as a NACC committee member. She is a lovely Geordie, from Newcastle and I am a “mac and tac” (from Durham) nly 32 yrs old, with two kids 3 and 5 yrs, so my heart is with her. They came in to our apt at the Fort for a drink (took an hour to get back here) and my wonderful husband had some good input…our regional NACC has 300 members in South East Cornwall, and I don’t know any single one! Ted and I have decided to do some support and fund raising for them. inviting members to our glorious Fort, with a heated outdoor swimming pool, paddling pool, tennis courts, private harbour if they had dinghies,private beach, I will do tapas and cakes, and two neighbours said they will help me with coffees, teas etc. So exhiliarated tonight after some awful weeks, and will split the fundraising between bcc and NACC.

My gastro didn’t even really go there tonight with mets from bc…he, and I know it is rare, but can happen, with my Crohn’s and father’s colon cancer. He did say he is disappointed with so little funding from NICE for new anti-TNFa drugs for Crohn’s, but he is one of only 3 Consultants in England that can prescribe thalidomide for Crohn’s, as he used in in Africa when working in a leper colony. Hopefully he can dismiss that when he looks at all my results tomorrow.

So sorry to unload all that…just so good to share with you wonderful ladies. My gastro said tonight that he worked at the Royal Marsden for 3 years but became so depressed with young people with incurable cancers that he had to find another area of medicine. How illuminating?
All of us IBD patients just adore this very exceptional doctor…told him, if you move, get your wife to find us an apt near to you!! Think he will stay here as we have a new University Medical School which has enticed great young doctors to the exceptional lifestyle we have; beside the Devon and Cornish coasts, wonderful schools, Dartmoor an hour away…gosh I could go forever.

Time for bed…sorry to take up all the forum time, but I have so appreciated the help and support I get from you…and my gastro thinks it is wonderful that I am now the Medhelp Community Leader for Crohn’s. Wish he could respond to their paid posts, but he said he doesn’t even have the time to do research.

Blissful night all.

Much love,
Liz.

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Hi Liz

Have just read your last two posts. Wow, I can’t be the first person to say this, but you really should write a book! Well, your postings read like one anyway - so flowing and interesting, we almost feel we know you, which is so lovely. It’s great to hear you sounding so upbeat, despite the uncertainties and difficulties that you are facing. Your doctor sounds like a most wonderful man and I can well imagine how “safe” his attention to you is making you feel, it must be a great comfort. Your forthcoming holiday in Spain sounds just wonderful - make sure that you manage to get there, and that you write and tell us all about it when you get back. Hope that by the time you are reading this you have had a good night and wake up still buzzing!

Love Sarah

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Hi Sarah,

for a recent update, you may like to look at the Profiles thread under Current Issues/hot topics… I am hanging in there for the time being as I now have a treatment plan as of Sat afternoon. Start enteral nutrition therapy in the morning. Hope springs eternal.

Love,.
Liz.

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Hi all… just need to rant after a dreadful experience at Derriford Hospital yesterday morning…we had to leave at 8 am and got home at 5 pm via ferry.

A lot has happened since I posted on July 11th…been on an elemental diet since then, 3 small bottles of Frutijuice, 900 calories total per day, but now down to 7st 3 lbs. My gastro rang me a week ago on a Saturday afternoon (had rung in the morning but I was doing the changeover at our holiday flat, which my otherwise caring and helpful husband, refuses to do)…rang back, and he was on the phone for over an hour, and I am not a private patient, so very grateful for his concern.

Being a secretary, I took shorthand notes (is that a dying skill these days?) and hardly understood what he was saying about “serious decisions I have to make”. He said he would fax my GP that day and I should go and see him (who is thankfully on holiday in Egypt for 3 weeks) and get a prescription for a steroid (budesonide) that he said will not give me psychosis as prednisolone did when I was dx with bc. He copied me and I was horrified by his two page letter…

He believes the cytotoxic drug, methotrexate, I have taken orally for 5 years, and in the last two years by self injections, I have become resistant to, and although anti-TNFa biologic therapies (Cimzia,Humira, Tysabril, Remicade etc.) would be the normal progression, he said because of my previous breast cancer and the stricturing in my small intestines, he is reluctant to consider these as first line therapy. I haven’t a clue what other “therapy” he has in mind, but he has talked to me in the past about thalidomide, as he used this drug when working in a leper colony in Africa and is only one of 4 physicians in England licensed by the German manfr to use it off licence for Crohn’s. Side effects are horrendous, but I guess, not morbidly more so than methotrexate long term. Lymphoma is the big problem and my last blood tests 2 weeks ago are disconcerting…white cells and neutrophils are too high, as are mean corpuscular and mean haemoglobin levels in my red cells from the bone marrow. In the short term, he has doubled my methotrexate injections, and prescribed budesonide, until he gets results from histology of the biopsies in my oesophagus. I expected those results yesterday…

Other problem is the bisphosphonate, Alendronic Acid I have taken for 18 months for bone density loss, due to steroids and Arimidex. I have stopped both of them. He said he thinks it is impossible to know whether the oesophagitis was caused by alendronate.

Saw a new female GP last week, at her insistence, when I called in for prescriptions, and she popped up from behind the reception counter like a Jack In The Box or Punch and Judy Show at the seaside, quite gave me a fright, and insisted I see her in 2 days time…well, it was a Friday evening. Told her I didn’t need to see a GP, I have a great gastro, and if needs be, a brilliant bc surgeon who has always looked after me.Pity I don’t have an Oncologist. She is a strange lady, very calm and quiet, and in no uncertain terms told me I should report her Senior Partner to the local PCT, GMC and BMA!! Can you believe that? She has sent a referral to a Professor of Endocrinology that my bc surgeon referred me to last February because of Arimidex side effects - he just said I had to contine with “resorptive meds”. She is also arranging an urgent DEXA scan as it is 3 yrs since I had one, and with 4 yrs on Arimidex, may account for the two fractures I had in my feet last summer.

Okay - that was fine, and I have changed my principal GP to her. I had an appt with my gastro yesterday to sort out future chemo, steroids and surgery on the strictures. Got there, saw a stupid Student Nurse who told me I was seeing “Mr. Dunlop”…duh? I told her I don’t see surgeons, and she, God forgive her, said he is a Consultant. So what? She insisted I see this guy, whom I have never met in 5 yrs of being treated by my gastro, and I gave her a short lecture on nomenclature in the medical hierarchy…surgeons are addressed as Mr…physicians as Dr.
She still insisted I see this gastro, hubby intervened and said can we see my IBD Nurse - she arrogantly said she is not here today …hubby, who normally never says a word but takes it all in, said: “Well, was it her ghost we saw 5 mins ago walking through the clinic?”… She went and got her, and Kathy apologised and said they have a new system and I was booked into the wrong gastro clinic, and my gastro is “on leave”. Probably too stressed out as he did say I have empirical problems and he doesn’t really know what to do. What refreshing ignorance.

Day wasn’t completely shot - a one and a half hour journey each way by car and ferry, as we did some lovely gourmet shopping at Waitrose. A long way from us, and I usually go in for some 4/5 gourmet items ( anchovies marinated in olive oil, garlic and herbs are our particular treat on french bread), and I end up spending some £80 on foods I cannot resist. No pockets in shrouds symdrome, as we are going to leave a fortune to BCC and Crohn’s charities, having no children of our own.

My IBD nurse rang when I got home with an appt to see my gastro next Wednesday, as he is on holiday for 3 weeks in August, and I do need to get sorted out before I can contemplate going to Spain August 17th with 9 close friends for my husband’s 80th birthday.

All I wanted yesterday was the results of the histology on the biopsies on my oesophagus 3 weeks ago …never had problems there before in 38 yrs of Crohn’s …and to be told my bc has not metastasised to the GI tract. I know if bisphosphonates are the cause of the ulcers there, I still have to address the abscesses in my small intestine and the stricturing…that I believe I can deal with, but think mets will be hard, especially as my father died of colon cancer at 59 yrs, and I am under no illusion I am at high risk on 3 factors for cancer of the intestines. Just having been pronounced NED at my 5 yrly review with my bc surgeon in February last, this bc rears its’ ugly head. One of my first Gastros at the Hammersmith Hospital some 30 yrs ago, said he will write me up in the IBD literature.

Gosh, so very tired of all this stuff, just when I felt so incredibly well. Guess life throws some of us some unusual curves at times.

Thank you all, for always being there, not just for me, but all the people who post here. Apologies for any typos, need to go to bed and just forget about all this stuff.

Liz.

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Oh Liz- what can I say - you are having more than your fair share of trouble.

Keep strong.

Take Care

Geraldine