Stage 4 Bowel Cancer with Liver Secondaries - NHS or Private Care?

Hello

I am so sorry to read of your diagnosis, and I understand your distress. I was diagnosed with colon cancer in October 2021 and the tumour was removed in November 2021. Unfortunately, it has spread to the liver. I have had CT scans and PET scans and like you, was on a course of capecitabine infusion over three months and tablets. This first round did not work and cancer was still growing on the liver. I had a private second opinion from another hospital and they confirmed that the treatment that I was getting was correct. 

I have just completed a second course of infusion with Oxaliplatin over a three month. A CT scan a few weeks ago confirmed that this is preventing the spread on the liver. I have now been advised to proceed with a third round of Oxaliplatin over three months, as my cancer, like yours, is very aggressive, but does not show up on 'markers' (whatever that is!). However, I have decide that quality of life is more important than longevity and have decided to take a one month break.

From what you say, I would strongly advise paying privately for a second opinion at another good, recommended hospital. Mine did it over the phone and by viewing reports and scans form my current hospital, but it did give the reassurance that I needed. Try to stay in the NHS system if possible, but it does seem odd that they will not remove the tumour.

I deliberately avoid using any medical terms etc such as you provide, because I now know that many of us trot out these terms without really understanding them; so I avoid using them! I live in hope, but I have no expectations.

Stay strong

Kind regards

Good evening

Many thanks for your reply, you have been very helpful. It sounds like we both have a similar diagnosis. Would you be able to give me any pointers as to where to look/how to find a good hospital or centre of excellence to approach for a 2nd opinion? And would you be willing to let me know who you used? 

Sending you my very best wishes with your treatment.

Good morning

Yes, it does sound similar. I was advised by a consultant friend to contact Southampton Hospital where they have a good record of treating patients with bowel cancer. They are offering a relatively new treatment called SIRT (you may already know about it). It was originally only offered to private patients, but now available on the NHS if your consultant recommends it. It is doubtful that in my case, it would be helpful, but I am keeping my options open. The consultant at Southampton reviewed all the data, CT scans, MRI and PET scans from Torbay (my hospital) and Plymouth Derrriford and confirmed that the treatment that I am getting is the correct one for my condition, but keeping the option of SIRT open. It reassured me and was worth the fee that I paid. I had two telephone consultations with Mr Arjun Takhar. My consultant also suggest that I might be referred to the Royal Marsden to take part in trials if present chemo fails to work.

You may wish to contact:

Spire Hospital Southampton (Private)

Chalybeate Close

Tremona Road

Southampton S016 6UY

Telephone: 02380 914458 (PA: Liz Smith, who is very helpful)

I do hope that this is a little help to you, but in any case do get a second opinion. Maybe there is someone recommended in your area, but as I said, all my consultation was on line, so I guess it doesn't matter. 

Take it a day at a time, listen and get the best advice that you can, but try to be realistic about where this may be heading. I'm taking a month of chemo before I start my next cycle, as I want to my thing for a few weeks. My view is quality rather than quantity of life. Talk a lot, be open and honest,  to those that you love and care about you, it does help.

With my best wishes

Good evening again

Thank you so much for taking the time to provide all this information, it's really helpful to me and I do appreciate it. I'm definitely going to get a second opinion and you've given me some good tips for getting started on the process. I hadn't heard about SIRT so thanks also for that - all my consultant has told me is that they don't have much to offer me!  

Have a good month off from chemo and try to do some of the things you would normally enjoy.

Your kind words and understanding have made me feel a bit better about the whole Cancer thing!

Take care.

Hello

I'm pleased that is helpful. It's always good to talk to someone who is going through the same thing. A second opinion will help to reassure you, but may not provide the answers that you are looking for. 

For me, I have my down days, but I am trying to be grateful that I know broadly when I will 'fall of my perch' and can prepare things for family and people that I love. Many people pass without having prepared for those that they leave behind. I'm also grateful that I will probably not get dementia; I have witnessed much cruelty from this awful disease recently and will be grateful to be spared it.  Meanwhile, I am fighting for a good outcome, determined to prove the medics wrong. I have hope,  but no expectations.

Let me know if you require any more information or just want a chat.

Take care

My husband was diagnosed with bowel cancer in March, further scans showed mets on the liver. As we had private medical insurance (taken out 25 years ago) all appointments, scans and treatments have been carried out privately. We have had amazing care so far - chemotherapy was at home which was great with all blood tests and check ups at home too. 
He’s had 4 rounds of chemo over 3 months, oxaliplatin infusion followed by 14 days of capecitibine tablets each time: His scans after round 3 showed a 30/50% reduction in the size of his tumours - 1 in the bowel and 6 secondaries in the liver. 

Phase 2 is a liver resection in a few weeks time then depending on how that goes he will have a bowel resection later in the year. 

We live in South Wales and are currently seeing specialists both in Swansea and Cardiff. Have to say the Oncologist in Velindre hospital in Cardiff has been fantastic. Our colorectal consultant in Swansea is also great and always positive when we see him. 
I would recommend seeing someone else for a second or even 3rd opinion, never give up fighting. 

Delighted to read that your husband is receiving the very good  care that you describe. I too am receiving very similar treatment from our excellent NHS cancer unit. However, Capecitibine did not work for me. Hoping to undergo SRIT in due course, but not liver resection.

Yes, getting a second opinion is very important.

I hope all continue to go well.

With best wishes.

Hi, I'm so pleased to hear that your husband is in such good hands for his care.  Having chemo at home sounds great and it seems he has had a brilliant response to it. I send you both my best wishes for his liver resection and whatever his future care and treatment entails.

I am definitely going to get a second opinion and am working on it at the moment.

Best regards and thank you for responding.

Hello,

I am sorry to hear of your diagnosis, it must have been an awful shock, especially as you have no symptoms.

My husband (now aged 62) has colorectal cancer diagnosed Nov 2019, with mets in the liver.  We had existing BUPA cover and saw Professor Tekkis who is linked to the Royal Marsden.  He told us the liver mets had to be dealt with first and so hubby had two liver resections by Professor Jiao at the Marsden.  Then the colon was operated on, by Prof Tekkis - sadly hubby ended up with a stoma due to the location of the tumour. He had been having ongoing varieties of chemo/immunotherapy ever since 2019 except for when they pause the drugs pre-op.  He's also had SIRT on the colon for a re-occurrence of the tumour there.  

Bear in mind if you go to the Marsden that the journey to and from London is a strain - and it is a regular occurrence.  It might be easier on you and your family to find a Doctor you are happy with and have a good relationship with that isn't too far from you - this is very important as you need to trust them.  We have a very respected Oncologist at the Marsden but his communication skills are sometimes lacking unfortunately.  (We live 3hrs from London).

I don't know if you call a private health provider and tell them the situation whether they would cover you, or whether you would have to pay as you go.  I hope you find an answer that suits you, whether private or NHS and that you obtain the right treatment for you.

With every good wish.

Hi SJT

Late to the chat but my mum’s initial oncologist had a different opinion on my mum’s clinical pathway . She had a great response to chemotherapy, so good that he felt it was the right pathway for her . I get that but we wanted to hear what the liver surgeons at a special centre of excellence thought . Her local surgeon agreed on a referral as he knew we would have headed there anyway .

They saw a window of opportunity and went forward with a very extensive resection . A difficult discussion with lots of implications but my mum decided she wanted to go with that treatment pathway . The rest is history , she is still here over a decade later .

Sometimes you just need to have absolutely certainty you are on the right pathway and for that reason alone other opinions are helpful .

Take care ,

Court