Hi I had Goblet carcinoid March 4years ago, I received Hypec Chemo ask your doctor about it, or google it to have a look,I became cancer free in the Sept,the same year,It’s crazy that this cancer is so rare and not a lot of hospitals understand or know a lot about it, however for me I was treated at a hospital in Manchester England, I had a 12 hour surgery they took a lot of my bowel i also had an hysterectomy and my overies remove, and my tummy button along with a few other bits of me. After surgery I began the recovery I thought with the Hypec chemo I would lose my hair but I didn’t, my immune system I didn’t to be honest I only had a sore mouth, but I did feel like I’d been 10 rounds with Mike Tyson, to be expected after 12 hours in surgery, my recovery was great I was so positive always smiling though I felt rubbish I pushed myself everyday, I was so thankful I was alive, The word cancer is enough to scare anyone, so I gathered my family and said if I smile you smile please don’t shed a tear foe cancer, so we had a plan to help each other with smiles, easier said than done you may be thinking, it was the best thing we all did and it helped us all through the worst most fearful time ever in my life. So if you are reading this don’t shed those tears keep smiling

Hi I had Goblet carcinoid March 4years ago, I received Hypec Chemo ask your doctor about it, or google it to have a look,I became cancer free in the Sept,the same year,It’s crazy that this cancer is so rare and not a lot of hospitals understand or know a lot about it, however for me I was treated at a hospital in Manchester England, I had a 12 hour surgery they took a lot of my bowel i also had an hysterectomy and my overies remove, and my tummy button along with a few other bits of me. After surgery I began the recovery I thought with the Hypec chemo I would lose my hair but I didn’t, my immune system I didn’t to be honest I only had a sore mouth, but I did feel like I’d been 10 rounds with Mike Tyson, to be expected after 12 hours in surgery, my recovery was great I was so positive always smiling though I felt rubbish I pushed myself everyday, I was so thankful I was alive, The word cancer is enough to scare anyone, so I gathered my family and said if I smile you smile please don’t shed a tear foe cancer, so we had a plan to help each other with smiles, easier said than done you may be thinking, it was the best thing we all did and it helped us all through the worst most fearful time ever in my life. So if you are reading this don’t shed those tears keep smiling

Hi. I'm sorry to ask but do you know at what stage your cancer was at. I've just got back from the oncologist with my mom who has been told after her op that her cancer is stage 4 (she was misdiagnosed for 18 months) it spread from her appendix to her bowel and ovaries. They have removed as much as they can but she now needs chemo but has been told that she will never be cancer free and will live around 2 years

Your post has filled me with some hope that she may be cancer free one day. Also were you treated on the nhs or private as with this type of cancer being rare they dont seem to know much about it.

Thanks 

Hi Wendy,

It sounds like my wife has a very similar condition to what you descibed. She has just had an almost repica surgery. I am keen to find her the best specialist casr for chemo and ongoing oversight. Would you recommend the hospital you had your treatment? Most grateful for any help at all.

Fantastic to hear you story and very uplifting and encouraging.

Thanks in advance.

Hi Wendy,

I just wanted to come back and thank you so so much for writing this post. Without the knowledge of your surgery things would look so different for me right now! 

I am 2 weeks post cytoreductive/hipec surgery, , I have had exactly the same surgery and recovering well. 

When I saw your post I went back to my lovely oncologist in Leeds and asked if she knew about this surgery and maybe I needed it too, she reached out to two hospitals and one decided to take me on. The crazy thing is that it isn't standard care to be referred, my oncologist had never even heard of the surgery! She said I have paved the way for anyone presenting with appendix cancer from now on, they will be referred to one of the excellent centres that deal with this type of cancer. Thank God! 

So yes I am so much more positive about my future and to anyone else diagnosed and reading this please please ask to be referred no matter what stage you are at. 

Warmest regards xxxx

Hi Fitzpag

I just wondered how you are getting on? 

Warm regards x

Hi Kerry D

How is your mum getting Along?

Hope all is well.

Warm regards x

Hi Wendy

How are you these days?

Warm regards x

Hi. Thanks so much for asking but she passed away last year after a 10 month fight and very little help from the doctors.

Regards 

Oh KerryD

I am so sorry to read this.

Unfortunately most doctors have absolutely no idea about it as it is so rare. Most oncologists too.

So so sorry for your loss.

X

I also had cyter reductive 9 hour surgery with HIPEC and 4 months of chemo after. My Goblet cell was found after my appendix burst and was removed. Everything happened so quickly and apparently my case was being talked about all through the hospital as it was so rare. I got the all clear after the major surgery but they wanted to ensure they'd " got it all" hence the 4 months of chemo. I have 6o they bloods and yearly CT scans with the dye and for the last 4 years, have had the all clear. I was told I was extremely lucky my appendix burst or they wouldn't have caught it. I just get concerned as nobody seems to be able to give a definitive answer as to the survival rate after 5 years as in, how likely is it to reoccur? I've tried Google but it's either all medical terminology and/or figures for 5 years and I can't seem to find info pertaining to patients who have been cured. I was told it was curative surgery and the prognosis was very good. I wonder if you know of any info or if your oncologist had any other info on this please?