Anyone had gastric secondaries with Lobular?

Diagnosed with Lobular exactly 5 years ago. Developed ‘acidy’ sort of stomach symptoms 3 years ago. Ignored it as the symptoms seem to come and go and I had always suffered relative constipation - sorry if this is TMI :frowning: Lately just have this ‘sloshy’ feeling all the time and have started to become very anxious as I know gastric could be to do with mets in Lobular.

Am absolutely terrified of having an endoscopy which my GP has recommended. I’m seeing my Onc and hope to persuade him to let me have a CT instead.

Any one had gastric symptoms and did it all turn out alright!!!

Many thanks for reading this, Grace

Hi Grace, mine wasn’t lobular it was trip neg but I’ve had stomach problems on and off for the past four years - three yrs after my diagnosis.I can be constipated and bloated one week and running to the loo the next. However I’ve been dx with IBS and find that apart from the medication I’m prescribed for it a course of Udo’s probiotics work wonders…I’d recommend them to you. They’re expensive but worth every penny and you can get them in your health food store.
Josie x

Hi,

not sure if it helps. Had probs. for years with bowel, before BC.

Had 3 OP’s incl. Mastectomy, after each OP bowel probs. got worse.

Managed to find out from anesthetist that the antibiotics one gets given after major op’s can cause these bowel problems, destroying the good bacteria in the gut. My GP had said is IBS. She was useless.

Solution was, acidophilus plus probiotics, that was now almost 2 years ago. No more problems.

With regard to Endoscopy - it’s not to bad had it done 3 months ago even without anesthetics (wanted to drive myself home afterwards).

Hope your fears will be unfounded. All the best.
Helen

PS Looking forward to a hip replacement op

Thank you for your tip Joy. Must admit I was taking acidopholus but ran out a while back - wonder if there is a connection?? I shall get some of the Udos stuff and give it a go!

Helen, thanks for your reply too. Best of luck with your next Op! You are soooo brave having the endoscopy with no sedation - I’m still in pieces just thinking about it. Well done!

Grace

Hi Grace

I do understand your worries. I was diagnosed with lobular cancer in 2009 and finished my treatment just before Christmas last year. I’m now on tamoxifen.

5 days after my last chemo I got the most terrible pain just above my stomach and going into my back and I was doubled in pain and then started throwing up. That was my first bout of severe acid reflux. I’d never even had indigestion before this. This came and went until April this year when it became persistant. I also had constant constipation which was also somthing I’d never suffered from.

I had an endoscopy done by the same surgeon that did my mastectomy and it showed absolutely nothing. That isn’t to say I don’t have an acid reflux problem though.

The reasons that your GP probably wants an endoscopy is that 1) they can see any inflammation etc 2) they can do an acid test to rule out H. Pylori which is a bacteria that causes stomach ulcers 3) they can see if you have a hiatus hernia which is quite common 4) if there was anything looking odd they could biopsy.

My surgeon decided that I was to have sedation and I didn’t argue as I felt I’d already been through enough. Was glad that I did.

The constipation I managed to treat myself eventually. After trying various drugs I have found what really works for me is crushed flax seed mix and dried figs. I make sure I have both every day and no problems then.
For the acid reflux I now take esomeprazole and domperidone. Can’t say it’s well controlled but it’s just about manageable. If your not on anything already you may get offered lansoprazole,omeprezole or esomeprazole - all similar.

Do check though about stopping any meds before your endoscopy.
let me know if you want any further info.
Elinda x

Hello Grace

Just wanted to put your mind to rest about the endoscopy. I had one a couple of years ago and was terrifed. They asked if i wanted sedation which I did. They injected the drug into my hand asked where I worked and can’t remember anything after that, till I was asked if I’d like tea and toast! Don’t be frightened it really isn’t worth it.

Are you on Tamoxifen? - I’ve noticed an increase in acid indigestion since I started on them.

Hope all goes well for you xx

Lella - I’m also on tamoxifen. The side effects listed do include gastrointestinal disturbances which is suitably vague. Think I found some research about acid reflux and tamoxifen and aromatase inhibitors. I’ll have a look later and see if I can find it.
Elinda

Thanks girls for the further replies! Elinda, did the sedation work for you with the endoscopy?? I have been on some forums :frowning: and lots of people seem to say that it didn’t work and they were aware of everything.

I haven’t got H pylori as had blood test for that a while ago.

Will be seeing my Onc in 2 weeks after I’ve had my breast MRI - which I also hate!

We all have to put up with so much don’t we?

best wishes, Grace

Hi Grace

Yes, the sedation completely knocked me out, I wasn’t aware of anything at all. it took a little while to wear off but I was glad of it. I’ve had a colonoscopy before without sedation and it was a very unpleasant experience.
If you’re worried make sure you say before the endoscopy so they give you a big enough dose.
Elinda x

Hi

I was dx with lobular mets to stomach year ago. Had awful indigestion then started being sick. GP thought it was bonderant (bone strengthener) and took me off it to see if symptons eased. As it happened I ended up in hospital through being sick,as bringing everything up including tablets.

Had an endoscopy which wasn’t pleasant but when had to have further one following week I asked for more sedation which was far better.

I did end up having an op called a gastrojejunostomy (sounds impressive) as my stomach was blocked which involved surgeon making new hole in stomach and attaching small intestine to it to create a by-pass. It wasn’t as scarey as this sounds.

I have taken Lanszoprazole since and been ok. Unfortunateley 10 days ago symptons started again and now on steriods and anti sickness. Has CT scan yesterday and waiting for appointment for endoscopy. I admit I’m abit apprehensive for this but will ask for extra sedation again as this did make it very do-able.

I have being trying to eat little and often and bland foods to help.

As others have said there could be numerous causes, I hope everything goes well for you.

Take care x

Thank you Lynn for your reply. I’m sorry to hear about problems with the stomach mets. You sound very brave to me having had two endoscopies and now waiting for another one. I will ask for sedation if I have to have one. I am taking Gaviscon on and off at the moment for what seems to be heartburn. My symptoms do seem to come and go and I will ask the Onc if I really need an endoscopy - hopefully he will say no!!!

hope your next endoscopy goes well and that results are encouraging.

Grace

Thanks gracet, I may not need endoscopy now as CT scan has showed a progression of mets, so looks like more chemo to knock it back again. BCN said won’t do endoscopy if not neccessary. Will find out on Wednesday oncs next plan of action!

What took me by surprise was scan showed 2 gallstones which now explains pain in my side which pleased its not cancer related.

I hope your symptoms ease and thanks for the reply.

Lynne

Hi Gracet, just to say I too had an endoscopy and like you was petrified at the thought of it. How I even managed to get myself into the endoscopy suite I don’t know, as my brain and legs wanted to do two entirely different things! It was actually fine. Like another lady who posted on this thread said once the injection went into my hand I didn’t know a thing, I just woke up feeling all warm and fuzzy. So I know its easy to say but it really isn’t as bad as you might think.
Good luck with everything, sending you cyber hugs.

Chris

Well done Chris and thank you! I think you are all amazingly brave as at the moment I am even afraid to tell my Onc about symptoms :frowning:

Why did you have an endoscopy? Are you lobular ? What was the outcome?? did you have symptoms?

sorry for so many questions but its hard to find stuff on the internet about lobular isn’t it?

best wishes, Grace