Recently diagnosed 'Invasive' Anal Cancer (SCC) with mets to lymph nodes, liver (several small lesions) and lun (one spot)

Hi Mountainrover 

I am very sorry to hear of your diagnosis and can completely sympathise as I’m in very much the same position. 

I was diagnosed last Jan 23 stage 3 with localised lymph nodes . Had 35 sessions of chemo ( capecitabine) radiation with 2 IV infusions of mitomycin and scans booked for Sept . 
The treatment worked very well and the tumour had completely disappeared, but some where in between, the cancer had travelled to pelvic, thoracic, cervical lymph nodes and a small lesion on my liver.

I then had 4 cycles of Cisplatin , Docetaxel and 5 FU. A PET scan in January this year showed that the chemo had worked a bit but not enough and there was further progression ( still lymph and liver mets but bigger ) . 
I’m in France and  was proposed a clinical trial of  immunotherapy, with or without a new vaccine . I was really excited and hopeful about this, did all the tests got accepted and then blocked just before starting, on account of the size of the liver mets. 
Im now on a different chemo drug, had my first cycle last week, 5 to go then scan .

For me personally , I was really keen to have immunotherapy. I like the idea of it re- educating your cells to do what they should be doing and less of a sledgehammer’ approach you get with chemo . I feel it’s proactive rather than reactive . Unfortunately there is no immunotherapy available for me in my area at this time . I’d be very interested to know the name of the immunotherapy they are proposing for you . 

All that said, and thinking about last year when I was  just starting out I probably would have opted for the tried and tested chemo . It does have really good results and I’m still free of cancer at the original site . 

I realise this is probably of no help to you in making a decision and I’m sorry to waffle on with my story but it was important to give you some context . I’m still hopeful that this current chemo will stabilise my cancer and that I’ll be able to have some immunotherapy at some point . 

Whatever you decide I wish all the very best of luck and am  sending positive energy your way xx

Hello mountainrover

I am so sorry to hear of your diagnosis and your need to find us, but a very warm welcome to the forum.

There are a few people here who were Stage IV at diagnosis, and I am one of those.  I had local lymph nodes involved and a spot on the lung.  I had six cycles over six months of carboplatin/paclitaxol in weekly treatment for three weeks and then two weeks off.  This was to shrink everything and prevent further spread.  I tolerated this very well, and have been left with some minor neuropathy in my feet which hasn't been a problem at all.  I then went on to have two lung ablations (there was an area on the other lung that looked suspicious), and then went on to have the standard 28 days chemo/radiotherapy.  I last had active treatment in March 2022 and my scans have been clear.  There is another forum member who underwent the same initial chemo as me and then had resection of the liver followed by the standard chemo/radiotherapy and she has also been clear.  I say this not to offer false hope or some amazing solution but to reinforce that even the most experienced oncologist doesn't know how an individual patient will respond to treatment.  And I have learned is that a good response to treatment opens avenues to other treatments that may not have been offered at diagnosis.

I was offered the opportunity to be on a blind trial whereby some patients would be given immunotherapy alongside chemo but the patient wouldn't know which arm they were on.  I declined, it meant travelling to a different hospital much farther away and involved some considerable arrangements in order for me to do this, and ultimately I wouldn't have known if I was getting the immunotherapy or not.  So I am sorry I can't help in that respect.  

I don't know where you are but I must admit (and I have no medical background) to being slightly surprised that the chemo mentioned to you is capecitabine; this chemo is given alongside radiotherapy but I thought that the carboplatin/paclitaxol regimen was the standard treatment for advanced anal cancer.  In fact my oncologist headed up the UK arm of research which found that this chemo combination was very effective and following trials treatment virtually changed worldwide the results were so good.  When I was first diagnosed I was in sheer panic and was looking around for a second opinion, but when I spoke to my oncologist, she spoke with such authority saying 'this is my area of expertise' that I investigated further and then found out she is a leading figure in anal cancer.  So I tell you this and ask you to bear in mind I am a lay person, but when something as important as cancer treatment is being discussed you are entitled to ask questions!

Wishing you lots of luck in your treatment, and I am happy to help (if I can) at any time.

Irene xx