Bowel obstruction with HGOC stage 4a inoperable

[Littlefluffycloud]

Hi, I haven’t posted in a long while but appreciate reading everyone’s advice and support to everyone else.

I had 3 attempts at surgery last year including the last with Christina F but all were unsuccessful due to extensive miliary disease on the bowel.

I went back on 2 chemos so I could start on Avastin and have now had 3 Avastin infusions alone.

I was admitted to hospital last week with severe abdominal pain and my oncologist thinks it’s the cancer causing bowel blockage. They are yet to review the latest scan from the second hospital though.

I can’t eat anything without pain except blended soups. Even a chunky soup sets it off. Oncologist says it may be temporary or permanent. It’s not bowel perforation from Avastin and so far the Avastin is keeping the cancer stable.

Has anyone had this problem? Is it possible to still get a few more years after this? Should I be asking for any surgery to unblock it?

Xx

[Fred22]

I’m so sorry you’re in this situation. I was diagnosed with 3b clear cell OC five years ago and had surgery and chemo. Then a recurrence in a retro peritoneal lymph node two years ago resulting in another complex surgery because of where it was and more chemo. I have been doing very well (I walked the Camino last year - 900km across northern Spain) but on 3rd January very suddenly developed severe stomach pain and vomiting - after struggling along at home not being able to eat (and being told I’d got a stomach bug by first 111 and then the GP) I finally contacted my surgeon when the vomiting became much worse. I was taken straight into hospital,’scanned and diagnosed with an obstruction in my small intestine. Was there for 10 days nil by mouth etc but the obstruction finally cleared without surgery. I’m home now but still being investigated - MRI next week. I’m on a very restricted low fibre diet and still may have surgery if they find adhesions - which is what they think caused it - from the previous surgeries. But all good at the moment. They definitely can and do operate on adhesions causing obstructions. I think you should definitely ask about surgery But also about other ways of clearing the blockage. If you can still eat soup then I imagine the gut isn’t completely blocked? Mine definitely was but what seemed to start it working again was a thing called Gastrografin which was used when they need to do an XRay at one point. This does work for some people and did for me thank goodness. Ask about this too?? Please ask me if you have any more questions but I think there are many people in this group who have had similar issues so hopefully they will reply too. Fx

[Littlefluffycloud in reply to Fred22]

Hi Fred, Thank you so much for your reply! Sorry to hear what you are going through too. I will ask about gastrografin. I’ve been given dexamethasone steroids and omeprazole and buscopan and domperidone but not given any proper guidance on food.

Is an MRI the best way to see what’s going on? I had everything but: CT, x Ray, ultrasound, camera down the throat. The A&E doctor thought it might be adhesions from surgery but my oncologist said with the miliary disease it’s likely to be the cancer causing it.

I’m not vomiting anymore but nothing has come out the other end for a few days.

On a brighter note, congrats on doing the Camino! I had fantasies of doing that so very impressed! I truly hope this is just a temporary blip for both of us. ♥️

Xx

[Fred22 in reply to Littlefluffycloud]

I had a CT when I got to hospital which showed that my intestines were very inflamed - it looked very weird - sort of fluffy! I think that told them enough to know it was a blockage and to start me on nil by mouth etc. I ended up with a PICC line which was great as my veins are hopeless after two lots of chemo. They fed me IV nutrition through this too. But I’m having an MRI next week which I gather will show more detail about what is going on. They don’t think it’s disease but they aren’t sure. Surgeon is talking about doing a laparoscopy after this, depending on what it shows, to sort things out. I’m keen on this too as was planning to walk the Camino again this year and need to know where I am! I don’t want this to happen again in the middle of nowhere and really need to eat better food as I think it would be very difficult to manage in this diet - not helped by the fact that I’m a vegetarian! I really hope you get to do the Camino - it’s an amazing experience and I loved every minute - literally!! Fx

[Littlefluffycloud in reply to Fred22]

My fantasies were for a few years time as my youngest 2 are 12 year old twins, but if I can do it in 4 years time I’ll really think Ive hit the jackpot!

My oncologists are always a bit vague - is it worse if the blockage is caused by the cancer than the scar tissue? TMI but I’ve just managed to go a little bit! So hoping that's a positive sign!

Shorter term goals I’m really hoping to be able to go home to New Zealand to see my family and friends in July and my twins are desperate to go to Japan on the way. I was feeling really good before this but now the 25 hour plane journey is a bit terrifying.

I hope you get to do it again though! Xb

[Fred22 in reply to Littlefluffycloud]

I am thinking of you and hoping that things keep moving! That is definitely a good sign! Fx