Anal cancer spread to distant lymph gland

Hello Weekend Walker

I am really sorry to hear about this lymph gland.  I'm afraid I don't have any useful information to share, but wanted you to know that I am thinking of you and hope they find a lasting solution.

Sending a big hug

Irene xx

Thank you 

Hello, I hope that you are coping with your diagnosis . In June 23, I was told that my cancer had spread to my distant lymph nodes. I was put on 6 sessions of chemo plaxitaxel and carboplatin, three weeks apart  After the 5th session, following a CT scan, the oncologist was very pleased with the outcome.  

This was followed by six weeks of radio therapy, which finished  Jan 24. 

 On seeing my oncologist 2 mths ago, she thought that it had all be successfully treated, apart from an ambiguous shadow on one node, which could be harmless, or not, so waiting for another ct scan in a months time.

The chemo wasn't too bad, though was feeling a bit tired by the end of it. Some lasting side effects, but in the following months these cleared up.  I found that If I tried to do too much in the first week after a chemo session, the some side effects were worse. It worked better if I rested for the first week, took things easy for the second week, and the last week I felt fine.  

They will monitor your bloods etc . closely to make sure that your body is tolerating the chemo.  Take into account that ever one's experience with chemo is different, and you may have less side effects, or different ones, but that it is surprising how  quickly the time goes, and then the treatment is finished.

I was told that they would not remove the lymph nodes surgically, as this is a major operation, and that my oncologist thought that it was of unproven benefit .

My cancer spread to my retro peritoneal lymph nodes, is this the same ones that apply to you?

Anal cancer is a rare disease, and its spread to distant lymph nodes is very uncommon. This means that they do not have the same data as to what may be best practise in its treatment. I very much have come to the conclusion that they do not have a standard protocol for this, as they do for less complicated anal cancer. 

I think that the best person to answer you questions about this is your oncologist, as there is little information about this online, and you will end up going down  'a rabbit hole!' 

Good luck with your treatment ,and keep me informed,

Thank you that is very reassuring its one week since chemo at first I eas OK but then the tiredness hit me so listening to my body and taking it easy let's hope the chemo is successful I don't know which kind it is just that there concerned about the nodes good luck to you also and let me know how you get on and I'll keep you I.formed 

Hi Mikel2000 I've started Mt chemo 2 weeks ago next cycle is 14th June so far I'm coping well but just starting to lose my hair so I'm sorting a turban and wig 

I went for my 2nd opinion and they said continue with the chemo then they will scan me to see what it has done so it's wait and see like you they won't do surgery .let me know how you get on and I'll keep updating when I have news take care xx

Sorry for not replying earlier, as I had problems logging on.

I lost my hair after the first treatment of Chemo, but by the second one it had started to grow back!  Now , 11 mths later, it has grown back even stronger and thicker, as well as being a darker colour.  

Glad to hear that you got a second opinion, I think that it's important to clear up and misunderstandings that you have about things.

One thing that they were very keen on while I was having treatment, was to make sure that I didn't loose any weight, so , if they have told the same thing to you, don't forget to treat yourself!

I am still waiting for my scan in three weeks time.

Take care, good luck.. xx

It's a waiting game my hair is starting to fall out so have ordered a turban and will sort a wig out good luck with your scan results keep in touch take care xx

Your hair will grow back, and when it does, it will be thicker and a different colour. 

Mine has gone darker , and more curly!

Thanks everyone all my hair has gone I'm getting a wig tomorrow and apart from tiredness I'm tolerating the chemo it's a case of doing something then resting like everyone days listen to your body xx

Hi Weekend Walker although I’ve not been through it It’s a difficult one losing your hair isn’t it? I think our hair is a big part of our identity & when that goes you must feel a little bit of you is lost, why not take this opportunity to reinvent yourself! Why not try a new style, a different colour maybe! Good luck with the wig tomorrow I’m sure whatever you choose you’ll look fabulous. 

You sound as though you’re managing your treatment sensibly, you’re listening to your body & resting when needs be which is good. 

Sending lots of positive healing thoughts your way. 

Nicola