Stage 3 rectal cancer at 24 and struggling to cope

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Hi everyone! I’ve recently just joined the macmillan community in the hopes that I’ll find people who are going through the same. 
As some background, I initially went to the doctors with IBS symptoms and after having a sigmoidoscopy and many other scans, they found it was stage 3 rectal cancer. I felt like my whole world turned upside down. I’m only 24 and also had non Hodgkin lymphoma when I was 7. Whenever I tell people or see doctors, they’re always so surprised how young I am because colorectal cancers are usually found in older people. I think this makes me struggle a lot more too as I feel as if I’m the only person my sort of age going through this and because I’m “young and healthy” I’ll get through it fine?
Due to the size of the tumour, they urged me to get a stoma so there would be no obstructions during my treatment. I ended up having an ileostomy and this worsened my mental health as it was always something I had dreaded having. I’ve had it for 8 weeks now and although I’m thankful that it’s eased the pain of my tumour, it has had a significant impact on my life, I’ve really started to lack self confidence because of it and don’t go out with anyone other than my mum. 
I’m currently having my treatment, daily radiotherapy and chemo tablets (capecitabine) for 5 weeks. I had an appointment with my oncologist consultant today and she said how it would be in my best interest to have 4 more cycles of chemo (capox) after this lot of treatment which has led to me feeling even more low. Due to prior conversations, I had it in my head that I would only be having this treatment and then surgery at the end of it and that would be it, which already was a lot for me, but to now have an added at least 3 months of treatment has just made me feel even worse. I know it’s what’s best for me but I feel like my whole life has stopped and to prolong it even more really upsets me. 
I’ve also had the discussion about risk of infertility due to the pelvic radiotherapy. After attending a fertility clinic about egg harvesting and freezing, they came to the conclusion that the risk of the procedure, due to the position of the tumour, outweighs the returns. Again, this was another thing that has upset me. I’ve had the choice of having children taken from me at such a young age, it feels so unfair. 
I feel a lot of sadness and anger. I just think, why me again? I like to think I am a good person, so why am I being punished with something so awful for the second time when there’s terrible people out there living a healthy life. I just wish my life could be happy and normal but even after I hopefully beat this, there is a concern it will come back again due to it being highly likely that I have the Lynch syndrome. I fear I will never be truly happy again or live a life where I’m not always worrying about my health. 
  • Hi  

    Welcome to the forum . 
    It is so much for a young person to endure and no wonder you feel overwhelmed. 
    I have children that age and it takes a lot of strength to face all this when you are older and not when you are starting out in life .

    Macmillan has teamed up with Bupa  to offer free counselling sessions . Our helpline staff have the contact details on 0808 808 0000.

    However I am also going to ask our team to contact you to see what support can be offered as you have mentioned there are many factors to this you need support with .

    Have you been in touch with the Lynch Association? One of our previous members has been instrumental in pulling a lot of that together to offer the right support .

    Also bowel cancer U.K. might have some support to younger people diagnosed with Bowel cancer .

    We have had a few younger people before and they have put this firmly in their rear view mirror with time .

    We can offer support to you as you navigate this next step . Do you know what chemo is being offered ? 
    Whilst I know you are strong and want to give your body every advantage for your future life we want you to get the best support around you as you do this .

    Take special care and I will ask the team to get in touch with you .

    It was actually a young girl that taught me so much about handling scanning even although it was my mum. Her words never left me despite the fact she is off out enjoying her life now . 
    Court 

    Community Champion Badge

    Helpline Number 0808 808 0000

  • Hi. Picking up on Court’s reference to Bowel Cancer UK I am one of the initial batch of volunteers for their recently launched Peer Support Line. We offer callers the opportunity to speak with someone who has lived experience of bowel cancer. One of the other volunteers is a young female bowel cancer sufferer who was diagnosed with bowel cancer whilst travelling. I don’t know her full story but she may have had to deal with some of the issues you mention.

    If you decide to contact the BCUK Peer Support Line tell the co-ordinator Tom signposted you to them and suggested you ask to speak with Charlotte.

    To reiterate Court’s comment there is a lot of support out there and, as a previous skeptic, I can assure you it really is good to talk.

    Best wishes.

    Tom

  • Hi  

    I’m Steph, I’m part of the Community team here at Macmillan. May I wish you another warm welcome to the Community.

    I was sorry to read of your stage 3 rectal cancer diagnosis and for everything that you’re feeling and coping with. I hope that you will find it helpful to be part of the Community and to be able to connect with people who have some understanding of what you're going through.

    I’m just popping in here to make sure that you have the right support around you.  and  have already offered you some excellent additional options of support, in addition to talking here in the forums. 

    In addition to the forums that you've already found, you might want to join our 'diagnosed at a young age' forum.

    It’s positive that you’ve already reached out for some support in the forums and please do keep talking as we know it can help to talk to people who have felt like you have

    We also have a Macmillan Support Line if you want to talk things through with someone who is there to listen. I'd really encourage you to get in touch to investigate all the support available to you. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00email or live webchat.

    You can ask our Support Line advisors about the BUPA counselling mentioned by court, find out more and refer yourself online here.

    We also have a Buddy scheme which you might be interested in.

    It's great that Tom  has already helped with the Bowel Cancer UK peer support options. You might want to start by reading some of the experiences shared here from younger people with bowel cancers. There is a whole dashboard of support for younger people here.

    There's another organisation called 'Young Lives vs Cancer' who offer a young persons service when you're diagnosed with cancer up to the age of 24. Find out more here.

    Please do let us know if you have any questions or need further support with anything at all. I hope that we can show you that you don’t need to go through anything alone.

    Steph
    Online Community Officer
  • Hi! So sorry to hear about your diagnosis. I was 24 when diagnosed with rectal cancer, stage 1. It’s my 26th birthday in a few days. You’ve been through so much already, and it is really unfair. But you are not alone! And you will get through this. I’m here if you want to chat about surgery or anything xx

  • Hi Court,

    Thank you so much for your reply to my post. 

    I really appreciate the suggestions of help, some of which I didn't know about. I wasn’t aware of the Lynch Association so I will definitely look into that! 

    The type of chemo I will be having after my current treatment will be Capox, so a mix of capecitabine, which i am currently on now, and oxaliplatin. I'll be having 4 rounds of this and then hopefully it will has shrunk enough to have surgery to remove the rest. 

    I'm really hoping that with time I can put this all behind me and think more positively about things, but right now I do think it's best to get myself some help to get me there!

    Thank you again for your kind and helpful message.

    Alisha

  • Hi Tom,

    Thank you for taking the time to read and reply to my post. I had no idea that the Peer Support Line existed until you mentioned it and after reaching out to them, the lady said she could try to get me in contact with Charlotte! Hopefully this helps me get into the right direction of feeling more positive about things again.

    Thanks again,

    Alisha

  • Hi Steph,

    Thank you for your kind and well informed message. Just reading some of the posts within the community have made me feel a little bit more at ease, knowing that I am not alone. 

    That's a great idea about checking the forum for diagnosed at a young age, thank you for mentioning it. I have also looked into and signed up for the buddy scheme which looks like it would be a great help. 

    You guys have been a great help with your suggestions and I really appreciate it!

    Thanks again,

    Alisha

  • Hi  , thank you for your message. It's comforting knowing that someone my age has been through the same as me and that I am not alone! I hope you are well now and able to live life as you were before. 

    If you don't mind me asking, how was the surgery for you? Was it just the tumour they were able to remove or did they have to take some of colon out too? I hope you made a speedy recovery from whatever type of surgery you had!

    And also happy birthday for whenever it is! xx

  • I am three times your age, but have recently gone through treatment for stage 2 colon cancer with perforation. I had FOLFOX for chemotherapy and 27 radiation treatments including 2 surgeries - ileostomy and reversal surgeries.  I am also a physical therapist.  One of the best, and I do mean best, things that I did for myself was to drink at least 2 quarts of water a day.  I started when in treatment and have continued to this day, 2 years after completing chemotherapy.  I had read "Your Body's Many Cries for Water" which was written by a physician who treats people with various conditions including bowel disorders, high blood pressure, etc. with water.  In the book the author recommends that we drink two and a half quarts of water a day or half your body weight in ounces.  Very importantly, he suggests supplementing sodium by dissolving a pinch of non iodized salt on the tongue after each quart of water is drunk.  While on chemo I actually drank 100 oz of water (I only weighted 135 pounds at the time, now 170) because I wanted to flush my kidneys and liver of the toxins in chemo.  I had been on blood pressure pills for 20 years and, after three weeks of drinking so much water even while on chemo, was able to stop taking blood pressure meds.  I still do not take them, or any medication.  The premise is simple, our bodies, and each individual cell is comprised of 70% water.  If we are chronically dehydrated, every cell in every tissue and organ suffers, as do our bodies processes, including the healing process.  Water only counts as water, coffee, tea, juices or any other liquids do not count for water intake.

    I have also learned, at a very slow rate, that a positive mind set is imperative for your body to heal maximally.  Please let me know if I can provide any other information from my perspective and good luck on your journey.

  • I assume they are shrinking your tumour before surgery. I am 6 weeks post op from removal but fid not have to have chemo or radiotherapy before or after as all results are clear. I have an ileostomy only temporary I hope. It takes some getting used to. You are young and survival is good dont dwell look forward. I am just 5 years clear of breast cancer and thought why me. I am 70 but quite strong. Think the best and be positive you will have many years ahead.