Mom just being diagnosed

Hi Silvia

Welcome to the forum . What a shock for your mum but a big positive she remains in robust health . That will assist her greatly. 
If you click on my user name you can read my mum’s story as she navigated a spread to her liver . Chemotherapy was very effective for her although a bit of a brute !

She made it to a centre of excellence for the liver and still here today . You have to absorb the stats then remind yourself that despite a difficult diagnosis there is a subgroup of patients that continue to respond to treatment .

My mum had difficult days on treatment for sure but she worked with her team to get the balance right for her . That brought more quality of life and she had many good days . We planned in the near future where as before we always planned further ahead but we made it work . Lots of happy times all captured on video back then .

It remains very individual and that’s the hope for me . Despite less chemotherapy options back then my mum and her team sought out windows of opportunity and one treatment opened doors to another . 

We focused on reducing the tumour burden slowly but surely . It took two years to get to a centre of excellence but she made it in the end . 

I need to pop out just now but will link in a booklet when I get back that goes into the option open to her team depending on her cell type . That in itself gave me hope !

My mum had a significant spread but it all but disappeared. Some people are very chemo responsive but it’s hard waiting to see how a loved one responds .

Take care ,

Court 

https://bowelcancerorguk.s3.amazonaws.com/Publications/TreatingAdvancedBowelCancer_BowelCancerUK.pdf

Sorry for the delay . 
This is the booklet I mentioned .

Take care ,

court 

Hi just a quick question if you don't mind. You said it was stage 4, how far had the cancer travelled. Was there any worry about the liver up until they actually found it there.

Hi JM84

Not sure if it’s me you are asking . My mum was stage 4 at the point of diagnosis. Very visible on her CT scan . I could even see it . 
However her liver was still functioning really well and all enzymes were normal or near to normal .

She had no symptoms of either and picked up on a bowel screen .

In my mind if there is some doubt it must be on the smaller side. Even seeing the scan myself I knew deep down something was certainly wrong and should not be there .

Take care ,

Court 

Hi I was asking Silvia but your reply was helpful. I've just had surgery to remove cancer on the bowel with spread,I've also 2 hemangiomas on the liver which they say isn't anything to worry about. I'm now worried that they could end up in fact being cancer like your mum and missed first time round. I'm maybe being over paranoid but it's feasible, well to me anyway!!

I was wondering if that what was concerning you . I think they have other information they draw these conclusions from a radiologist Perspective . Which I obviously have limited knowledge of but can share broadly how they explained it to us .

They not only look at the size etc but the appearance of the image . I don’t think cancer has the same regular shape as say a cyst or a hemanginoma . Which is why you hear a lot of oncologist say they have noted something but it is not of concern . 
Also I think if it’s a cancer the PET scan lights up in a liver spread . It did for my mum’s whereas it is not the same uptake for benign situations .

My mum had two other nodules popped up when she had her lung spread . One had uptake in the PET scan the other two did not . The lung surgeon actually showed my mum on the scan how the blood supply was different and how they can tell the difference. It was interesting and I am doing him a big disservice by simplifying it to the point of inaccuracies. But you get the idea.

If something is so small that they can’t interpret it at this stage you can be assured they would be all over it like a rash of it did alter on the image . 
Hope that helps a little although interpret with caution as it’s purely how it was explained to us a long time ago .

Take care ,

Court 

Great info. Im actually in the waiting room to see the oncologist as we speak. I'll have a good chat about my liver and also its my first day of chemo today. Alot to process 

All the very best . It’s a lot and overwhelming for you but they will take great care of you and after my mum got familiar with the process it was more manageable for her . 
I will look out for how you got on .

court 

I looked at your profile and am tremendously impressed with your mum. I'm 79, diagnosed with bowel cancer which has spread to my liver. I've actually seen the bowel cancer itself during a colonosocopy. I'm waiting for my treatment plan. But there is of course the usual postcode lottery about the types and quality of treatment available. How did you navigate to a centre of excellence? 

Hi ,

There are around seven in the U.K. and you can identify them by googling liver transplant units . It’s the same surgeons I think . In Scotland it is Edinburgh. 
You also might like to look into Radio frequency Ablation . There is criteria for everything but in my very limited experience it pays to see what criteria people actually meet then you can make an informed choice with the clinical guidance from your team . We found the liver surgeons were at pains to explain everything in detail so my mum could weigh it all up for herself risk/benefits analysis. They answered all her questions and more but were also very truthful about the risks . We all agreed they guided her clinically but also very thorough and compassionate too .

Hope your holding up ok . I would also say it was chemotherapy that changed things around for my mum . It was an excellent tool in the box too and there are a lot of different chemos too depending on your cell type .

Take special care ,

Court