One yr post anal cancer, now facing liver metastasis & further treatment

Hi Winnie, up to now I have been told surgery was not possible as the Mets are scattered and multiple.

Unfortunately my Colorectal Consultant is very difficult to chat to so finding it hard getting much put of him!!. And feel I am still a bit in the dark, but positive the chemo is having a good response after my 1st CT scan on 15th October.

However just to update . I saw him yesterday, I am now on my 4th chemo cycle of 6, 2nd infusion went well yesterday, so next Friday will be 3rd infusion with week off after. Due to finish 30th Jan.

We did discuss my radiation yesterday but it will be dependent on the CT/MRI scan results that he has planned in for me at the end of Jan when I complete my 6th chemo cycle. He suggests depending on the liver response I will possibly have only 2/3 5x a week radiotherapy if good response but 5 x 5 times a week if no so good on the liver, that's his explanation!!

The last CT after just 5 infusions did show a 20% reduction in one met which was  25mm, but had reduced to 19mm , so he said that's a good response but still no suggestion of surgery, although admit I didn't ask that question.

As I am originally from Lancaster but now live in Scotland, due to the prognosis I was given on diagnosis in August,  we are relocating back to Lancaster to be closer to family,  so I will be changing my care, so will be under a new team from early Feb for the radiotherapy although he will be passing on my plan to them.

I see him again on Friday so am taking in a list and will press him again for more specific detail and update you. I must admit I haven't asked if ultimately surgery could be an option now, as on 1st diagnosis just from a CNS, to explain result of 1st colonoscopy/CT scan, that how it was just a rectal tumour that wouldn't spread and just radiotherapy treatment to sort it out then routine CT scans to keep an eye on it, which didn't seem too bad, to then 5 days later another appointment with a colorectal surgeon being told it was spread to liver  and terminal!! I was floored , he just said surgery wasn't an option as there were multiple tumours, no mention there could be depending on chemo results, and I guess I was in such shock I just accepted that, but feel in a slightly better place now and knowing the good reduction up to now I am prepared to ask again, guess I don't really want a negative on the surgery!! 

Sorry for such a long drone, suffering with terrible heartburn tonight so sat up drinking ginger & lemon tea!!.

Hope you're doing ok? X

Hi, can I just ask as we seem to have a similar diagnosis, like you I was told surgery wasn't an option on the liver due to spread of tumours/locations.  Did you have carboplatin/ paclitaxel chemo initially? Just wondering if that's quite successful why we still don't get offered surgery like some do?. I have just been told it will be radiotherapy next after chemo , number of treatments dependent on CT/MRI results once 6th chemo cycle is resulted on at the end of Jan. X

Yes into cycle 4 now, doing ok thanks. Hope you are recovered from the resection. X

Hi JDTb698a5,  It sounds like you have been through a difficult period, It doesn’t help if your team/consultant are difficult to talk to as you must feel you are fighting your own corner instead of feeling supported. Glad to hear the chemo is working for you. 

I think the surgery options really depend on the spread of the metastasis, I’m no expert but I had two lesions close together and small enough to remove with clear margins taken out around them.

  Am recovering well, slowly, it’s been very sore at times but think I’m on the mend now. I have an oncology review at the end of Jan and I think a CT scan this month so will see how things are then. 

Hope your move goes well and hopefully you will be more able to discuss your treatment plan and ask all the questions you have with your new team. Take care of yourself and try to keep as positive as possible, I appreciate that is hard at times but so important. One day at a time. Sending hugs xx

Thanks, yes seems like I have quite a few Mets and they are spread, but hopefully if the chemo does reduce them then can always hope they could become operable . Still a way to go before the next scan but hoping for good news. Hope your CT & review go well. Xx

Hi there,

I hope you don’t mind me messaging but a close relative of mine is now going through this and it sounds very similar to your stories.

i hope it is all going well for you. They have also been told it’s P&C chemo and surgery isn’t an option.

the local 5fu worked and “cured” but the 3 months post treatment scan showed lesions in the liver: 

i am hoping to understand how long people can be stable with this line of therapy as there is such limited data out there.

Hi, not sure what the 5fu is. I was initially told after my chemo it will be radiotherapy for the Rectal tumour, but the amount needed will depend on what impact the  the Carbo/Pax have had.

I just had my last chemo yesterday so that's me done with 6 x 28 day cycles. Hasn't been too bad, just some mild neuropathy in my feet which I hope may improve.  I have an MRI & CT scan on the 5th Feb to see how I've responded. Results with Consultant on 20th Feb. Then will know where I go from there.

Hope your relative is doing ok. X

Thank you, they have really been through it. Sorry it was the chemo radiation for 5.5 weeks aimed at the local cancerous polyp/tumour and local lymph nodes. Chemo pump for 4 days at the beginning and again at end but every day radio Monday to Friday. This was successful but on follow up scan 3 months post treatment it showed liver lesions so this is what’s we are tacking at the moment just started paclitaxel and carboplatin for the next 6 months.

i am just seeking to see if anyone else who has liver mets what their treatment options have been as I am researching a lot of can see surgery, targeted therapies and also immunotherapy. 

thank you 

Aah right. My diagnosis in August last year was Squamous cell rectal tumour, but also liver Mets which were a spread from the tumour, they were diagnosed after a liver biopsy.  Initially before they found the spread I was told 5 weeks of 5 times a week local radiotherapy to the tumour, but once they found the liver Mets they went straight in with the carboplatin and paclitaxel cycles with radiotherapy to follow. I was told the liver nets were scattered so no surgery optional. My scan results will dictate the next plan. Just in the process of moving from Scotland to England, so will be under a different hospital for the next step!!

Good luck with your research, please keep us updated.  I might be doing the same thing after my results.

Hope your recovery has carried on well, and your scan/review went well.

I finished my last chemo yesterday, have to have a blood transfusion on Tuesday due to low Haemoglobin, but other than it's not been too bad, got my response CT&MRI scans on Thursday 5th , results on 20th Feb by phone from my consultant so finger crossed for that,  as I will have moved back to  England from Scotland by then. We actually move on the 5th, literally straight after my scans!! Keeping me distracted though (: