My friend has bowel cancer and liver mets

Hi  and warm welcome to the Macmillan Online Community although sorry that you had to find us, sorry to hear about your friends diagnosis and especially sad to hear the challenges she has been facing.

Yes, it is unfortunately very hard and heartbreaking to see the effect COVID has had on the provision of cancer treatment. Over the past year I have talked with many folks who have had to wait months and had to fight hard to make any progress in getting treatment.

Macmillan are actively promoting the Forgotten C campaign to try and raise the awareness of the problem we are experiencing.

A cancer diagnosis in the family and friends can be challenging in so many ways but talking with others who are walking the same type of cancer treatment journey will help you help your friend navigate this difficult time.

The Community is organised into cancer specific support groups, I see you have found and posted in our Bowel (colon and rectum) cancer group, we also have our Liver, secondary cancer group, these will be good places to connect with patients and families navigating the same type of cancer treatment journey.

To go to the groups just click on the link above then introduce yourself by putting up a ‘New Thread’ or hit the box with the X on the top right (phones), you could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'. 

When it comes to the practical challenges of supporting someone you may benefit from talking with others caring for family and friends so do check out our Family and friends group as you will connect with others supporting family and friends through their cancer journey.

It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.

Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.

To find information covering diagnosis, treatments and pages covering most types of cancers can be found on our Online Information and Support Section. 

((hugs))

Thanks for your reply, she has actually found the nurse specialist and Macmillan nurses unhelpful as they do not reply to answer phone messages and when she does ask them questions they have not got back her until she has chased them up. One of them was quite curt with her initially too so she is reluctant to bother them. She has found the consultants secretaries the most helpful and responsive. We are wondering if her outcome would have been different had she been more affluent! Options such as proton beam, immunotherapy etc that exist privately locally but have never been discussed! How do we know what to ask? She’s been told it’s not curable so any intervention is to give her time but it’s been 3 month since the liver surgeon asked for chemo before he performs ablation and it hasn’t even started yet! The oncologist has said she won’t be going back to the liver surgeon now despite no word from him saying he had decided not to ablate.  The communication has and still is appalling.

Hi again . First I see you have been posting in our Bowel (colon and rectum) cancer group and been talking with my friend court, talking with folks who have walked your friends journey can help a lot as my journey is completely different so keep that communication going.

I will add that my condition is incurable but I am still around, our main focus is always on the now and we let tomorrow take care of itself. We do have this group supporting someone with incurable cancer  again a good place to connect with others who understand.

Your comments about the lack of communication are unfortunately not that unusual at the moment.

Please hear me when I say this and I am in any way making any excuses, but some areas of the NHS are under extreme pressure as a result of the last year.

I am a Heamatology patient and have been on my journey for 22 years now. Our Macmillan Specialist Consultant Nurse is amazing, we see her as our mother hen..... but we did have a frosty start to our relationship.

When I talk with folks coming on the cancer journey, mostly in the blood cancer groups I  look after I talk about the need to ‘get the pointy elbows into the system.

Unfortunately we have to be our own advocate at times and more so during these times as we navigate our way out of Covid.

My Heamatology SCN says their work load has doubled over the past 6 months along with severe staff shortage due to so many staff off having to self isolate...... this has resulted in the original cracks in our amazing NHS system getting bigger.

My advise is your friend is going to have to get persistently pushy. Calling all the numbers she has including her GP to keep the system working for her....... and never take no for an answer. If she is just not able to do this she may give the poets to represent her to a family member of friend like yourself.

She can contact NHS PALS (see link) and make a complaint. https://www.nhs.uk/chq/Pages/1082.aspx?CategoryID=68

Again I would recommend she checks out for a local Maggie’s Centre as these folks are amazing and can give support and advice from a distance.

And I will highlight the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service can give lots of information, support, financial guidance or just a listening ear. We also have our Ask an Expert section, but do allow two working days for replies from our expert team.

((hugs))

Hi 

I can’t quite remember some of your friends details . Immunotherapy is only suitable for certain cell types . MSI or people with lynch syndrome and possibly a few others but I would need to check up ! They are only coming through now in the bowel forum through the NHS and prior to that mainly on clinical trails . It really helps for your friend to know their cell type as it starts to narrow down the appropriate clinical pathways for them to focus on .

By far the majority of stage 4 patients with a spread to the liver go straight to chemo . For good reason too as it not only reduces the size of the existing spread but can allow microdisease to be targeted too . Surgery really does feel like a solution but chemo was the game changer for my mum . The concern over the delays in treatment I think we discussed and it’s at the concerning end ! Did they get their baseline scan done !

Most oncologist go recommend going straight to chemo . The only exception I have noted is one singular liver met ! Not sure if your friend meets that criteria but they do like to use a systemic approach to target non visible cells !

However they rescan again at the end of chemo and the MDT meeting regroups to see the best treatment going forward from that point . This can also be a good junction to seek a second opinion on their care if they felt options were limited and we have sought surgical opinions twice for my mum . The GP can have a role in facilitating this if required.

The secretary is often a valuable resource and often not given the credit they deserve. 

I can’t remember if it was you  I mentioned this too but I keep a close eye on bowel cancer across the globe and I think I said I would have a look into proton therapy as I have not seen it used. Unfortunately a very close neighbour has been rushed in for emergency surgery and I have been a bit derailed !

My mum has just twelve years later emerged from the oncologists care . It’s a marathon for sure and I understand if trust issues have arisen it creates quite an anxiety.

Regarding the private sector over NHS it really is swings and round and roundabouts . Some chemo is more accessible however for the extensive liver resections it’s a case of centres of excellence with the highly experienced staff and ICU units for us all the way ! 

I think it’s great you are getting informed and learning how to navigate a big system . Sometimes it does not always feel as though it’s there but there are mechanisms in place to ensure they get access to find the best pathway for them ,

Sorry if I am repeating myself . You might find Pubmed search engine good for getting up to speed with the recent research if you are able to decode the medical jargon . I would say it’s hard reading some of the stats though and what’s seen can’t be unseen ! It also requires a bit of skill to interpret. Check the date too ! I made that mistake early on and sample size . It’s inclined to be less reliable is too small .

Take care ,

Court 

Thankyou for your replys