Being treated for Anal rectal cancer but no obvious tumour

Hello Mazzamoo2a9db3 

A warm welcome to the forum although I am really sorry to hear of your diagnosis.  I haven't (yet) heard of anal cancer presenting in the neck so can't offer any shared experience.  However, I was stage IV at diagnosis with a tumour that was also submucosal, but mine showed up as a lump in the rectum and it took several procedures in order to get a biopsy.  I also had a spot on the lung.  So I went the same route as you, six cycles of Carboplatin and Paclitaxel.  At the time, I was told depending on my response, they may go on to do pelvic chemo/radiotherapy and then an ablation on my lung.  And that is exactly what happened.

It sounds as if you are tolerating the chemo very well, I did too.  A couple of minor hiccups on the way with liver and magnesium levels but it was all sorted out quickly.  I was scanned at three months and then at six months by which time the shrinkage had slowed down but my oncologist told me that was entirely to be expected.

And I think what you have remember is that depending on the success of the chemo and immunotherapy you are having now, it may open up further avenues of treatment, not always, but no one oncologist can totally accurately predict a person's response to chemotherapy.

If there is anything I can help with at all, just ask, happy to help in any way I can.

Big hug

Irene xx

Hi I also had the chemo but not with immunotherapy.do you mind if I ask which immunotherapy as I'm interested in having immunotherapy .Good luck with the treatment xx

Thank you Irene, thats really helpful - as you say no one can really predict individual responses to chemo I guess. 

Hi there yes its called retifanlimab , its not available on the NHS yet but my oncologist requested a compassionate donation as he had been involved in clinical trials and it is now being used in private oncology treatment . I feel very lucky to have him fighting my corner for me . 

Thanks for that good luck with the treatment keep us updated  xx

Hi Mazzamoo2a9db3 , another warm welcome from me to the Macmillan Online Community although I’m really sorry to hear of your diagnosis.

Reading your reply to weekend walker below you’ve got an amazing oncologist treating you, we all hope for someone in charge of our care that’s willing to pull out all of the stops. 

I do seem to recall someone on the forum having secondary disease in a lymph node in their neck but can’t remember if that’s how their disease was discovered, apologies for my memory being a little sketchy!

I’ve said several times on here how prior to my own diagnosis I innocently thought that there were only 2 outcomes when someone was given a cancer diagnosis, you were either told you were curable or terminal but now I understand there’s a whole lot of living going on between those 2 diagnosis, there’s a whole spectrum of people ‘living with’ different cancers & living well so although I know it must be so difficult when you hear the news that you’re not curable never stop living, keep making plans, keep doing what you love with the people that you love. I have a friend that was classed as not curable, she had immunotherapy for malignant melanoma that had metastasised to several areas internally including a grade 2 brain tumour, she is now living cancer free & has been for the last few years. Keep on keeping on.

Nicola 

Hi Nikki, thank you for that message, its really hopeful and thats what I’m trying to do - not always managing it but most of the time , and its definitely the way to go . Xx

Marilyn 

I am on immunotherapy for stage 4 colorectal cancer with lymph node mets and lung mets. I started on nivolumab and ipilimumab in October but now just on nivolumab. My recent scan showed that my tumours are mostly stabilised thankfully. I have several lymph nodes tumours on my neck and some in my abdomen as well as spots in my lungs. 

 Pamb 

I am so pleased your tumours have stabilised.

Sending all my very best wishes and I do hope your stable status continues.

Irene xx

Hi Pamb ,

I’m really sorry to hear of your diagnosis but pleased to hear that the immunotherapy has managed to stabilise things. 

Sending lots of healing thoughts your way.

Nicola