Just diagnosed

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steve_k

34 year old and just diagnosed with stage IV

Hi there. I’ve been experiencing stomach cramps, sickness & diarrhoea since 31st December and have had a series of :x:-rays, CT scans, a PET CT and a biopsy from some lymph glands in the back of my abdomen. They had told me that they suspected lymphoma (which I saw as a worst case scenario) but yesterday I was diagnosed with stage IV colon cancer. It has spread to my lymph nodes, lungs, bones and potentially my liver.

My doctor has booked a colonoscopy for this morning and said that I’m likely to start a 6month course of chemotherapy next week. I understand that immunotherapy could be an option but it’s only possible if I am part of an rare gene pool which we do not know at this stage but I think they will be checking.

I asked the likely outcome of the chemotherapy and he told me the average is 2-3 years.

I’m in complete shock (as is my family). I’m 34 years old, I have a young daughter and our second baby is due in July. I can’t believe that this is happening.

I’m glad to find this forum and I guess I am writing this message for any words of support, advice or guidance that people may have for me.

Susie Ruth

hi Steve - what a truly awful shock for you. I can’t offer much advice but plenty of people here can - and I just wanted to say to please have a look if you can at @Jane39 ‘s profile - she was given a very grim prognosis but - as she says - she’s still here five years later. I think she is one of the moderators here too..

I’ve been noticing just how unpredictable this disease is through reading posts - but this place is so supportive and kind - it’s really important to look after your emotional well-being as well as your physical - here’s some love and support from me :x::x::x:

Poppies

Hi @steve_k welcome to the forum. What a dreadful shock for you and your family. I can’t offer any advice really, but being on here over 2 years, I know that you are not a statistic. There will people along who received a very poor prognosis and are here living quality lives. Google isn’t your friend at this time, so I am glad you found this place where the information is accurate and it’s a supportive environment. P :x::x::x:

HH79

Hi @steve_k im so sorry and welcome to forum which is fab. You can read my profile I’m 5 half years in now and also young kids. So much hope to be had and treatments. There’s a private Fab group called ‘Living with Stage 4 Bowel Cancer U.K.’ lots of support there too and many young ones :x::x:

skyetripper

Hi.
This must be a very frightening time for you, and having just been diagnosed with Stage IV myself I have a little understanding of how difficult this is. As @Poppies has said, do try to remember that you are not just a statistic and there are many stories of people who have been given a poor prognosis but have confounded the consultants.

Against the popular wisdom, I have consulted Google, but having spent my working life researching and sorting the wheat from the chaff, I’ve actually found it useful in many ways. In particular it brought me to this site which has been incredibly informative and helpful.

Difficult as it seems, try to keep a positive outlook,but similarly, don’t be afraid to let your loved ones know how you’re feeling (something I admit to being very bad at myself).

I’m finding it helpful to take each day as it comes and to try to keep doing normal things. I keep telling myself and those around me that ‘nothing has changed’. I’m still the same person I was before diagnosis, just I now have a battle to fight. Keep strong.

charleyb

@skyetripper just wanted to send my support also and that I’m so sorry you are here!! Try not to focus on that prognosis, even though it’s impossible not to!! Lots of stage 4s doing well and beating the stats, and my lovely husband is one of them. Diagnosed in 2017 when our children were 1 and 3 yrs old, he was told he would only survive 1-3 yrs, well he’s here and in remission and this year makes it 5 years since diagnosis. Keep strong and make sure you get the best care possible, no stone left unturned!! Take care :x::x:

chgluk

hi @steve_k ,
In 2014, I was diagnosed LUNG cancer.
In Nov 2021, I was diagnosed Bowel cancer.
Today, I can speak to you. If you want to live, all people can support you.
You will live longer than me.

Lirio345

Hi @steve_k, a very warm welcome to the forum although I am so very sorry to hear of your diagnosis.

I would like to start with the prognosis which is an average statistic and is not based on you. I was diagnosed at stage 4 in January 2015 and although I am on permanent chemo I live a near normal life. There are a number of other forum members who can tell a similar story.

Just to add to the brilliant advice above I would carry out some research about a possible second opinion at a cancer specialist hospital such as The Christie or The Royal Marsden, or a large hospital with a good reputation for cancer treatment. This is standard to ensure you are getting the best possible treatment. I am not suggesting you necessarily go ahead with this now, but if you want to in the future.

Please ask anything at all; the BCUK publications can be very useful and cover all aspects of having bowel cancer, take very good care, Kim :x::x:

Ali

@steve_k am so sorry to read your diagnosis, especially in view of your age and that you have a daughter and another baby on the way. It is difficult to take in and get your head around it all. I focused on the physical side but hadn’t bargained for the emotional side but

Ali

Oops sorry pressed send in error…..after time it does start to sink in. We are all different and it does help to read other stories on here. I just wanted to wish you well and ask any questions this forum if you are unsure or worried.

Ali :x::x:

Baxter2

Hi @steve_k,

I wanted just to add my welcome and offer of support to you Steve. I can see you've already had lots of lovely replies. No wonder you can't believe this is happening and it probably all seems like a bit of a horrible nightmare at the moment as you struggle to process all this news.that part does take time and is different for everybody. I really do feel for you and all the other young ones being diagnosed with bc especially at stage 4. You're certainly not alone. I for one wasn't expected to live beyond the end of 2016 and today I'm well, live a near normal life albeit on continuous chemotherapy. Have a read of my profile if you want to wear my story.

Wishing you and your family all the best and lots of love,

Karen 🌸🌻🌺🌼🌷

clarey

@steve_k Sorry to hear this! This is the worst time for you. When you start treatment you will have a different focus. Please forget the 2-3 years bit! You are not a statistic, we are all individuals and respond differently to treatment. So many positive journeys on here to read.
Try and remain in the moment ( I know hard at times). I was diagnosed Oct 2019 and still feeling quite fit and well. I would never ask how long I have as do not need to know. No one knows their future is my thinking. I try and live like the cancer is not there - this takes time.
Sending love to you and your family :x::x:

steve_k

Thank you all for your responses! After writing this I stayed away from the forum for a while but coming back to it now to do some more research.

I’m pleased to say that I’m halfway through my first chemotherapy and the scan results that I received last week showed that it’s doing the right thing with reductions in the size of my metastases. Very pleased to hear that and also to be experiencing a lot less pain as a result which has helped me to live a more normal life and spend a lot of quality time with my family.

Thanks again for all of your messages/ advice and wishing you all the best on your individual journeys.

Steve

Jane39

Hi @steve_k
Great news with your scan results.
Very pleased for you.
Sounds like you are doing great with your chemo.
Best Wishes
Jane :x:

Deano65

I was stage 4 in May 2017 with spread to lymph nodes liver and lungs and same prognosis 2 to 3 years. Still here 5 years this week. Stay positive.:x:

Lucy118

That’s lovely news @steve_k. Keeping everything crossed for you that your treatment continues to work wonders. Lots of love :x::x::x: