Stage 4 bowel cancer

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SandyToes

Stage 4 Bowel Cancer with Liver Secondaries - Not being considered for surgery

Hi, I’m new on here and would appreciate others in similar situations sharing their experiences.

In October 2021 at the age of 62, following routine screening, I was diagnosed with Stage 4 Adenocarcinoma of the Caecum with multiple liver metastasis and I was told that my cancer was particularly aggressive - RAS wild type, BRAF mutation positive, K601E positive. I’d had no symptoms whatsoever so this obviously came as a huge shock and was devastating to myself and family. I was given a poor prognosis, informed that curative surgery would not be a possibility, and offered 8 cycles of palliative chemotherapy with capecitabine tablets and oxaliplatin infusion (CAPOX). The midway and post treatment CT and MRI scans showed a good response with reduction in the size of the liver secondaries and no apparent new lesions but the MDT still advised that liver surgery was unlikely and the team have been totally dismissive of any questions I ask about the tumour in the bowel and whether surgery to remove that could be considered.

At this point I changed to a different consultant oncologist who seemed more enthusiastic about giving consideration to possible surgery and he arranged for me to have a PET scan which still showed lesions in my liver but no active cancer in them or anywhere else in my body except the site of the primary cancer in my bowel. The oncologist was quite hopeful that removal of the bowel tumour could now be a possibility but once again the MDT are unwilling to consider this and are merely advising to continue with chemotherapy in the form of capecitabine tablets only. The MDT has not been responsive to my request for explanation or evidence to back up their decision. I still have no cancer symptoms.

To be honest, from the start I have been given the impression that the NHS/MDT has just written me off and I most certainly now feel that they are not willing to give me any chance of a possible cure or prolonging my life. I find it hard getting my head round what seems like lots of people on the forum talking about having had surgery when I'm struggling to get the MDT to even consider it.

Any advice, tips or experiences would be welcome, thank you.

Liz Blakelands

@SandyToes
Hi and welcome to the forum but really sorry about your diagnosis and the problems you are having. I hope you find it helpful and friendly. I'm really sorry that you feel that you medical team is not doing everything it can for you.

What I really don't understand is why the MDT team are unwilling to give you an explanation why an operation on the primary tumour is out of the question. There must be a reason why this decision was made and they should give you an explanation.
Have you asked the colorectal nursing team for an explanation?

Have you asked you GP for an explanation? Letters (which you should get a copy of) are sent to the GP informing them of diagnosis and treatment.

One option is to ask for a 2nd opinion from a centre of excellence, this would depend on where you live.

Lots on the forum have been told they are untreatable then a 2nd opinion has given options.

Others will be along who will be able to give you more specific advice.

Big hug, Liz :x::x:

Baxter2

Hi @SandyToes and a very warm welcome to the forum from me! I'm sure you'll find us a friendly and supportive community.

I'm so sorry to read of your diagnosis and the devastating feeling of being, "written off". This resonated with me as I had a very similar experience. Rather than trying to summarise, please have a read of my profile for the detail. Like Liz suggested, I sought second opinions from oncologist and surgeons and did have successful surgery carried out at Basingstoke (which is a centre of excellence for the particular surgery I had) you can ask your GP or Oncologist to refer you. Some accept referrals from the patient but that's not the norm. Please ask away if there's anything I can help you with and also consider joining the stage 4 Fb group where there's lots more experience of stage 4/metastatic bowel cancer. It's called, 'Living with stage 4 Bowel cancer U.K.'.

Sending you lots of love,

Karen 🌻🌻🌻🌻🌻

skyetripper

Hi @SandyToes. Sorry to hear about your diagnosis and particularly the lack of information you are getting.

In many ways I’m in a similar situation (Diagnosed January stage 4 with liver metastasis) and they are similarly reticent about surgery. I had four cycles of Capiri from Feb to May but with no marked improvement, and then had an enforced pause due to surgery for a bowel blockage. I’m now back on chemo but have started Capox this time.

I’m not medical, but I can tell you it took the best part of six months for me to find out why they wouldn’t operate on me. Whilst I only have one liver metastasis (actually there are now two..) it’s joined or touching the major blood vessels and they’re of the opinion that if they remove the liver met it has a very high chance of recurrence and a very real risk of damaging the blood vessels. They also won’t remove the primary tumour partly because of its involvement with other structures (can’t tell you what structures 🤷‍♂️) and partly because there’s little benefit unless they can remove the liver met.

Sorry I can’t be specific help to you, but from my own situation I do now know that things can be a lot more complicated than it first appears, although like you, I’m not sure why they didn’t give me the full reasoning at an earlier point. Having said that, I’m going to wait until my next scan after round 4 of Capox and if there’s no change in the tumours or the MDT plans for me I’ll be looking for a second opinion. I’m sure my current team are doing everything correctly, but as others on here have said, there is absolutely nothing to lose about getting a second opinion.

Take care and let us know what you find out.
Alan

SandyToes

Hi Liz
Many thanks for your reply.
When I was first diagnosed I was told there was no need to remove the primary tumour at that point as it was not causing me any problems or symptoms and it would delay the start of chemotherapy. They felt that the liver was more serious and it was more important to try to shrink the liver lesions and control the spread of the disease. At that time I did agree, but now that I've had a good response to the chemotherapy with regression of the disease, I would like them to give consideration to operating on the bowel and removing the primary tumour. I really don't understand why they're so reluctant and dismissive but I will now be exploring the option of getting a 2nd opinion so thanks for that suggestion. Fingers crossed I will get a more positive response.
Take care. :x:

SandyToes
Quote from @Baxter2:
Hi @SandyToes and a very warm welcome to the forum from me! I'm sure you'll find us a friendly and supportive community.

I'm so sorry to read of your diagnosis and the devastating feeling of being, "written off". This resonated with me as I had a very similar experience. Rather than trying to summarise, please have a read of my profile for the detail. Like Liz suggested, I sought second opinions from oncologist and surgeons and did have successful surgery carried out at Basingstoke (which is a centre of excellence for the particular surgery I had) you can ask your GP or Oncologist to refer you. Some accept referrals from the patient but that's not the norm. Please ask away if there's anything I can help you with and also consider joining the stage 4 Fb group where there's lots more experience of stage 4/metastatic bowel cancer. It's called, 'Living with stage 4 Bowel cancer U.K.'.

Sending you lots of love,

Karen 🌻🌻🌻🌻🌻

Hi, many thanks for your welcoming message. It's reassuring to hear that someone else has experienced similar feelings to myself. What a journey you've been through, you really are an inspiration! I will now be exploring the option of seeking a second opinion and hope this turns out to be more positive.

Best wishes :x:

SandyToes
Quote from @skyetripper:
Hi @SandyToes. Sorry to hear about your diagnosis and particularly the lack of information you are getting.

In many ways I’m in a similar situation (Diagnosed January stage 4 with liver metastasis) and they are similarly reticent about surgery. I had four cycles of Capiri from Feb to May but with no marked improvement, and then had an enforced pause due to surgery for a bowel blockage. I’m now back on chemo but have started Capox this time.

I’m not medical, but I can tell you it took the best part of six months for me to find out why they wouldn’t operate on me. Whilst I only have one liver metastasis (actually there are now two..) it’s joined or touching the major blood vessels and they’re of the opinion that if they remove the liver met it has a very high chance of recurrence and a very real risk of damaging the blood vessels. They also won’t remove the primary tumour partly because of its involvement with other structures (can’t tell you what structures 🤷‍♂️) and partly because there’s little benefit unless they can remove the liver met.

Sorry I can’t be specific help to you, but from my own situation I do now know that things can be a lot more complicated than it first appears, although like you, I’m not sure why they didn’t give me the full reasoning at an earlier point. Having said that, I’m going to wait until my next scan after round 4 of Capox and if there’s no change in the tumours or the MDT plans for me I’ll be looking for a second opinion. I’m sure my current team are doing everything correctly, but as others on here have said, there is absolutely nothing to lose about getting a second opinion.

Take care and let us know what you find out.
Alan

Hi, many thanks for sharing your experiences with me and I wish you all the best in your cancer journey.
When I was first diagnosed I was told there was no need to remove the primary tumour at that point as it was not causing me any problems or symptoms and it would delay the start of chemotherapy. They felt that the liver was more serious as I have 14 lesions, and it was more important to try to shrink them and control the spread of the disease. At that time I did agree, but now that I've had a good response to the chemotherapy with regression of the disease, I would like them to give consideration to operating on the bowel and removing the primary tumour whilst I'm still relatively well and before the development of a blockage or similar that would then probably require emergency surgery which I have been told could well happen.
I am now going to explore the option of getting a second opinion, as you say there's nothing to lose.
Best wishes.