Secondary lymph node cancer after anal cancer

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Hi there, my mum has had anal cancer previously and had radiotherapy and chemotherapy. She had amazing results and the tumour was gone and she got the all clear six months ago.

Unfortunately she has found out this week that it’s come back and it’s in her lymph nodes, neck pelvis and abdomen…and they have said it’s not curable however it’s not as yet in any of her organs. Classed as stage 4. They are putting her on immunotherapy, and 2 types of chemo. Think they said it was a carcinoma or something.

it’s apparently quite a rare cancer anal cancer and reaccurance is also quite unlikely. So bit of bad luck twice sadly.

it would just be good to hear about anyone else’s experience as to what to expect? I’ve come to believe they can treat it and she could like quite a long time with the cancer.

just looking to connect and get bit more insight and info

Very much appreciated. We are just all upset that it’s back.

thanks El

  • Hi there  ,

    Firstly welcome to the Macmillan online community although I’m really sorry to hear what your mum is going through right now, I can only imagine how upset you all are & the turmoil you’re going through. 

    I don’t have personal experience of what your mum is facing but I didn’t want your post to go unanswered.

    Anal cancer in itself is still thankfully one of the rarer cancers although numbers are on the rise. Was it Squamous Cell Carcinoma they’ve diagnosed your mum with? This is the more common of anal cancers, then there’s adenocarcinoma which is rarer again. 

    There are so many more people these days that are ‘living with cancer’ as treatments develop & improve this will become more & more commonplace I think. I personally know 3 people that are classed as incurable, they’re on some form of treatment, 2 on oral chemo & 1 has had immunotherapy & they’re out there living their lives. I think Immunotherapy is the most recent big breakthrough in cancer treatments, a friend of mine was diagnosed with pretty aggressive malignant melanoma that had really quickly spread from her leg (actually 2 places on her legs) to her kidney, lymph node in her chest & a stage 2 mass in her brain, her oncologist advised a one off blast of radiotherapy for the brain metastasis a nephrectomy for her kidney mets & then immunotherapy, her treatments were around 5 years ago now & as far as I’m aware she’s currently disease free! She’s still followed up by oncology as I think she was classed stage 4 also but she’s working & living an active life, she’s amazing. 

    Hopefully someone with a little more insight into a similar situation will come along & offer some advice. In the meantime please also remember to look after yourself too, it’s a really stressful situation you’re in at the moment, we can offer support for you here or we have the Family and friends forum where you can speak with others that are supporting a family member of friend that’s had a cancer diagnosis, it’s just somewhere where you can let off a bit of steam & probably get some tips on how best to support your mum through this. 

    Once again I’m sorry you’re all going through this.

    Nicola 

  • Hello El

    I am so very sorry that your Mum's cancer has come back, it must have been the news you were absolutely dreading after getting the all-clear.  I can imagine this is a hugely difficult time for you all.

    I know of two people who are on long-term treatment for cancer, one for bowel cancer and the other for cervical cancer.  The cervical cancer in particular is being treated with carboplatin/paclitaxel which is the chemo that is often used for anal cancer (squamous cell carcinoma) spread and I know of one person who has been on this for twelve years.  Because I had spread to my lung/s at diagnosis I had six months of this first before further chemo/radiotherapy and I tolerated it very well.   My daughter's young friend who has cervical cancer is also being treated with this chemo.  I lost all my hair but found a wonderful seller on Etsy who made me really lovely flattering chemo caps in different colours to match my outfits (I honestly felt quite stylish!) and I am happy to pass on her details if this hair loss is likely to happen with your Mum.  My other friend with bowel cancer has been on long-term chemo since early 2019, she totally accepts that it is part of her life now and goes off caravanning with her husband and getting on with her life.  As Nicola says, there are many many people who are on long-term treatment and the oncologists seem to have a lot more options at their disposal to keep everything under control.

    I think we all know that a cancer diagnosis has such a ripple effect and I know my family were devastated; even now, over two years after diagnosis my phone goes off in the consulting room the minute my appointment was due to finish with my daughters wanting to know if there is any news.  Please look after yourself too, Nicola has given a valuable resource for family and of course, you are more than welcome to come here for support as well.

    We are all thinking of you and rooting for your Mum.

    Irene xx

  • Hi Alex,

    I'm so, so sorry to hear about your Mum's recurrence. We all dread that! The All-Clear should last for longer!!

    I don't have experience with this situation, but I'm so glad you found this forum as it's a great place to be able to vent and find support. I do know that 'not curable' doesn't mean 'soon to die' or even 'meh life'. So many people find a regimen that allows them to manage incurable cancer and go on to have stellar lives.

    How are her spirits? I'm so glad she's got YOU!

    Hugs

    Suz

  • Hi Suz and thanks for getting in touch :) 

    yes we’ve just had our first child and it’s been a very happy time for her until sadly she went for a standard check up and the doctors dropped the bombshell.

    Yes the forum has been very good and it’s good for me to talk to people about their journeys and discuss the challenges of it all.

    She has been very up and down in all honesty, her behaviour has been abit erratic and frantic and it’s been hard with all the waiting around. Mixture of emotions as you can imagine. she’s had a good Googling session and it has made her panic because of some of the info out there. I think at this stage like you said there are things they can do for her and treat it and that’s given her some comfort. Starts the immunotherapy and chemo next week and she’s now said she’s going for it.

    naturally she’s a very positive person with a great sense of humour but she says she feels robbed and angry at everything…then next day it’s acceptance and it’s like she has written herself off already. 

    Im sure it will help when treatment round 2 starts. Is there any way I could support her…do or help?

    trying to get her to focus on positives but it’s hard with cancer 

    thanks again for getting in touch.

    Alex

  • Irene thanks for getting in touch. Yes it’s been a tough time for us and my mum. She has been so happy after feeling like she has beaten cancer but unfortunately it has returned.

    yes that’s the chemo she’s on and potentially going on an immunotherapy trial with a drug called retifanlimab. yes it’s (squamous cell carcinoma) I believe.

    im glad to hear you tolerated it well in the first instance and i sincerely hope you are doing well overall after what must of been a stressful time. I wish you all the best with everything :) also positive thoughts for the other people you’ve mentioned above. 


    if you could send that link to the Etsy that would be fantastic either in here or private message. I think it must be very difficult for women losing their hair which didn’t happen the first time. I try to play it down because my family just want her to feel comfortable about it. My mum is quite glamorous and think she will be very self conscious about it all.

    you right it’s tough for the family aswel. My grandma is 90 and is very close to my mum and it’s very hard for her. It’s helpful to have good people around you and we all want to do anything we can.

    as someone who’s had cancer what did you feel was most helpful in terms of support? And did you feel well enough to do things after the chemo treatments? I can tell she is quite scared of it all.

    With it being fairly rare we haven’t to many people to talk to about it. 

    thanks again Irene I appreciate it :)

    El x 

  • Hello El

    I found the six-month course of chemo I had first much easier than the combined chemo/radiotherapy.  I had chemo every week for three weeks and then a two-week break.  I had my hair cut very short in preparation, which was a good thing for me, as the hair loss was quite dramatic by about the second treatment.  It was difficult to sleep the night after chemo as the patient is normally given steroids to counteract any nausea and it wasn't unknown for me to be doing housework at 2.00am in the morning!  I sometimes felt a bit more tired than normal, but still was walking 30-odd miles a week with my dogs.  I bought very soft kohl pencils to give my eyes and brows some definition and no-one noticed that I had no eyelashes.  I did try the cold cap (many chemo wards have a supply of these) which can help reduce hair loss and I lasted all of two minutes!  I found the intense cold unbearable.

    I tried lots of chemo caps, and many of them were tight like swimming hats or just plain unflattering, but these  https://www.etsy.com/uk/listing/1056148987/jersey-hat-headwear-for-cancer-chemo?ref=yr_purchases

    were by far the most comfortable to wear.

    Losing my hair wasn't as bad as I thought, but I felt really unhappy that it became obvious that I was a cancer patient and silly as it may seem now, back then I didn't want people to know or to pity me.  But I didn't often wear the caps at home, it was the middle of summer and my head was hot.  I bought a very expensive wig which I never wore as I couldn't bear the tight feeling around my head, plus it was so much more lush than my real hair!  Even now I struggle to analyse my feelings then, but I was blessed with a very supportive family and my daughters were involved in everything from choosing makeup, hats and always being there to listen.

    I really hope that your Mum's experience of that particular regime of chemo is as positive as mine was; I didn't even want to see the chemo ward prior to treatment I was so terrified, but it was a lovely large sunny room, the staff were so patient and kind.  And, something I didn't expect, there was always some laughter between them and the patients.

    Just you being there for your Mum will be a huge help; I know it must be very frightening for you too but it is important that the cancer patient doesn't protect those close at the cost of his/her own well-being.  Some nights we would have a few glasses of wine, all end up in tears, a group hug, dust ourselves down and then watch a a really good film.  They (and my husband) made me feel I was never alone and that anything I was going through they were always going to be there with me.

    Sending big hugs

    Irene xx

      

  • Hi Irene thanks for your message and sorry it’s taken some time to reply. Interesting what you said about the steroids as my mum said that she was given these after her treatment and made her feel great and full of energy. She crashed the next day though. She has been getting out and about and it sounds like you did also. Sounds beneficial so I’ll encourage her to keep that up.

    so far she hasn’t felt too bad she said apart from being tired and lack of an appetite.

    I think my mum is cutting her hair short this week in preparation and said it makes her feel like she’s doing it on her terms abit. Which is understandable.

    thanks for the tips and sharing your story. She has a great support network. We talk most days and some of the chats are deep and emotionally very draining. But I let her vent and tell me how she’s feeling. It’s difficult for everyone but she is staying positive and we are hoping the next lot of treatment helps her.

    she’s found it difficult the waiting around but more settled now and reflective. Hope you and your family are well. It’s a horrible thing for anyone to go through but coming out the other side must feel so good. x x 

  • AlexNth

    Thank you Alex, we are all well and we have two young grandsons coming for the weekend - they are such fun but it means I have to have very early nights!

    I am so glad your Mum has you (and her wider support network). I know how hard it is on you too, especially as you have a young baby and there are limits to what you can do.  But listening is so important and the fact that she is so positive about the journey ahead is testament to how strong the support she has.

    I hope very much that this treatment helps her too; the senior oncologist treating me was a leading member of a group of oncologists carrying out a trial in the treatment of advanced anal cancer. During the trial, the results were so good that I don't think they waited until the end to change standard treatment worldwide to the carboplatin/paclitaxel regimen for advanced anal cancer.

    Look after yourself too, Alex (my elder daughter is an Alex too!)

    Irene xx

  • Hi Irene as always thanks for your message.sounds like a busy and tiring weekend but lovely also with it being great weather.

    will definitely take your points on board about listening etc. just want to make it all as bearable as I can for my mum. She’s had the steroids post treatment which has helped her energy levels.

    she’s having 6 cycles also and then they review her immunotherapy trial if needed. She may be on placebo.

    are you having radio and another type of chemo now or are you on a trial?read your bio

    My mum wants to do the full cycle of course, she’s in good health apart from the cancer. In terms of tolerance, are most people able to do the full cycle do you know? So far seems ok.

    my other question is when you were having it did you have to be careful with immune system ie stay away from people with coughs and colds etc? Just wanting my mum to be careful.

    have a lovely weekend and thanks for all your help :) Alex is a great name!

    private message me if it’s easier thanks again 

    just great to get another perspective on things, your case seems similar to my mums. She’s not great with IT hence why I’m on here on her behalf haha 


    Alex x x 

  • Hi there , like ur mum I was diagnosed with anal cancer & was ready for treatment to start but following a PET scan had discovered it had already spread to my lymph nodes so treatment plan changed I had 6 rounds of chemo for lymph nodes followed by 28 rounds of radiotherapy therapy along with chemo tablets I just finished in March follow up scans start the 5th June results 28th June so don't no how successful treatment has been, good luck to ur mumHeart