Diagnosed and treatment

*mooch

Ohhhh this is exactly what I’m looking for. I’ve already accessed your blog now and gone back to the start of your journey. Thank you so much xxxx 

Hi Collette 

I have recovered from the liver resection.  They found no cancer in my liver, but 2 of the 4 lymph nodes were positive. 

I will start oral chemo on Monday.  At 78 I am not sure how that will go, as I am sensitive to any medication.  I am grateful that there is a treatment. 

Your posts and blog have been very helpful to me, and I admire your tenacious attitude. 

Virginia 

Hi Virginia I'm really glad to hear your recovery is going well, it's a tough surgery to recover from.  

I had a friend who was in our situation and she couldn't tolerate the chemotherapy by intravenous injection so she had the tablet form and it worked well for her as she had a lot of other health issues too. Sadly she passed away a couple of years ago but again she did have other health problems. 

 I found that if you can think about chemotherapy as a 'gift' (as in, not everyone with cancer has the opportunity to have it) it made me feel differently towards it, yes the side effects were at times awful but I kept in mind how lucky I was to have it xx

Take care x

Thanks again Collette.  I am still amazed at how unique we are! There is no forum in the US like this. I found one from 2017 but I guess everyone on it died. 

Sadly the statistics aren't great for GBC, I'm 7 years in and I'm told I have definitely bucked the trend. It's just an incredibly isolating cancer to have and having rare cancer/s means less patients survive long enough for any meaningful research to have any real impact on our situation. But where there is life there is hope xx

Hi Collette sorry to jump on the post but I have just started reading your blog and wanted to say thank you. I have posted on here when this all first started and you did reply then as well. I saw the consultant just over a week ago and his opening words were this isn’t cancer but as I had struggled well failed to have the contrast on the mri rather then try again it would be better to remove my gallbladder. That’s the bits I heard at the time. Today I read the letter he sent to my gp and saw then heard (hubby recorded the appointment as he knew I would want to re listen, although oddly until today I hadn’t) so the ultrasound showed a 1.3 lesion with some vascularity and worry some pathology this was where I was certain it was cancer. Two weeks later and the mri then another two weeks and the results were in. My gp rang and told me it is benign which I still didn’t feel sure but gradually settled. An appointment came through for the gastro clinic the end of April. Now I re listen and see the letter it is a 3cm lesion possible polyp with vascularity. The surgeon did seem sure from the mri which said it is a raised suspicion of chronic adenomyomatosis but then it suspicion of a fairly large polyp which for me is the worrying factor. In conclusion he has said rather then go back to the mri to go straight for removal. This has all set the worry off as being told it isn’t cancer did settle me (I still wasn’t sure to be honest) mostly. I don’t want to go into this thinking it isn’t cancer as very clearly it does have the potential and if I am going to have to hear this diagnosis I do feel I need it to be on the table.. starting to read your blog and see how you do support people on here I just wanted to thank you. Sorry again (as you have said in your blog sorry seems to be the word that comes out a lot) for jumping on the post. Xx

Aww I remember your story, it was an incredibly anxious time as I recall, I think Riccardo was also involved in that chat thread too? 

I hope my blog helped you to see that life does continue, even if it's slightly or hugely different to what it once was and not to be all flippant but a genuine positive outlook or attitude has worked well for me.

Please keep us updated on how you are doing Sid31, and have a lovely weekend x

Ps sorry for the weird emojis I'm currently on my phone replying whisky in line at Costco for a hot dog for the husband and a slice of pizza

And PPS.. I have a lesion on my liver that has raised concerns numerous times with various people who have scanned me and it's nothing, most likely scar tissue they tell me but this lesion is nothing to worry about and so therefore I don't worry about it if you get me x