topic Re: Just been diagnosed with incurable bowel cancer in I've just been diagnosed

Just been diagnosed with incurable bowel cancer

EcoMuse — Sun, 15 Jan 2017 07:06:06 GMT

Hello,

my name is Mel and I never imagined I would be posting on a cancer forum. Four days ago I was diagnosed with incurable bowel cancer. We currently don't know the exact spread of the cancer and will be undergoing a PET scan and keyhole surgery. I was sent to the emergency department with flu like symptoms including chills, fever, headaches and vomiting a couple of weeks ago. The initial diagnoses was that I had atypical pneumonia, however I was also showing signs of severe anemia which is not a typical symptom of pneumonia. So after more scans, scopes, blood tests and eight days in hospital the doctors returned with the diagnosis of incurable bowel cancer. My bowel cancer unfortunately did not present like normal bowel cancer and I was therefore unable to catch it in time. I had visited my local GP about 4 months ago complaining of stomach pains, and it was diagnosed as bad constipation. I changed my eating habits and everything was ok. I am 35 years of age, currently working fulltime, studying part time and have just purchased a new house with my partner. I have been told by the doctor that I might get 2 years with treatment, 6 months without treatment. I am kind of in two different mind sets at the moment, one trying to be positive, still making plans for the future, eating healthy, contacting doctors, ect. The other is making a living will, funeral arrangement, life insurance, ect. Personally I am currently physically and mentally in a good place, but it's so hard watching others that your care about and love going through the grieving process. Having to tell you parents about your diagnosis, seeing how scared your parent gets about the thought of living without me.

I guess I just wanted to share my story and hope to connect with others that may be going through the same experience. I have a great network around me, but their experience with this is a little different.

Hope to chat with you all soon,

Cheers

Mel

Re: Just been diagnosed with incurable bowel cancer

Margaret_CCNSW — Wed, 18 Jan 2017 05:39:20 GMT

Hi Mel,

I can't imagine how difficult it was for you to receive that diagnosis and prognosis and then having to break that news to family and friends.

I wanted to let you know that Cancer Council has a number of programs that may be helpful for you, including legal and financial services, as well supportive services such as counselling. These programs can be accessed via the 131120 Information and Support line where trained health professionals can speak with you about your situation and let you know about relevant services.

One program you might find helpful if you would like to speak to others, is the Telephone Support Group (TSG) for people with a diagnosis of advanced cancer. The TSG provides an opportunity to regularly talk with others in a similar situation so that experiences, information and coping strategies are shared. For more information please phone: 1300 755 632 (messages can be left) or you could email tsg@nswcc.org.au and include your contact number and we can call you.

Take care,

Margaret

from the Online Community team

Re: Just been diagnosed with incurable bowel cancer

CaptainAustrali — Mon, 30 Jan 2017 09:19:45 GMT

Hey Mel

Normally when they say it's incurable (are you sure they didn't say "inoperable"), it's because it's Stage 4 and metastasised to other parts of the body. Bowel cancer is actually pretty treatable these days.

One word of advice - never take a defeatist attitude with your cancer NO MATTER what they say.

I'd suggest that concurrent to orthodox therapies (surgery, chemo, radiation), look at immuno defense, as the gut & bowel are the starting points of our health. There's a lot of quackery online, but also a lot of sincere testimonials where people with bowel cancer who couldnt afford or had no hope from orthodox therapies tried alternative health approaches (superfoods like pawpaw for example), and the total cleansing and antioxidant diets helped to push their disease into remission.

Google search stuff like "super foods versus cancer" and decide for yourself....

But never give up hope.

Re: Just been diagnosed with incurable bowel cancer

EcoMuse — Mon, 27 Feb 2017 06:12:48 GMT

Hi CaptainAustralia,

Thank you for the information, I will keep that in mind. After my original post I found out that they classed it "incurable" as the cancer had spread to the cavity and to my liver. I will be undergoing surgery on a couple of weeks at Peter MacCallum Cancer Centre to remove the primary tumour. I will then be undertaking extensive chemotheropy. My new surgeon has said that even if I'm not cured, we will keep chipping away at it. I am remaining positive and making a lot if lifestyle changes to give myself the best possible chance.

Cheers

Mel

Re: Just been diagnosed with incurable bowel cancer

Nicbrown — Mon, 13 Mar 2017 02:03:43 GMT

Hi Mel,

I'm so sorry for your recent diagnosis...hearing the word 'incurable' is just mind blowing! I'm in the same boat..., although not bowel cancer. I was diagnosed with endometrial cancer in 2015, went through surgery, chemo, radiation and was in remission... for 18mths.. it returned in November 2016 on my lungs. I was told it was incurable any treatment may prolong my life... for how long??? who knows?

I'm 43, active, working full-time and was about to finish my uni degree.. this was a major spanner in the works.. very similar to your situation.. I feel your pain in relaying the news to your partner, family and friends... you're still digesting it yourself and so the expeirence seems so surreal...and seeing them react was even worse.

On the upside, I am 2 chemo treatments short of completion and positive results in my scan at halfway point.. afterwards, they'll put me on an anti-hormone tablet which will hopefully maintain it from coming back? or coming back sooner?

I'm positive most of the time, but as you know, sometimes some days are just so hard to comprehend. So I try to keep focussed on believing that there will be something that will keep me going.. .there are alot of clinical trials going on and believe that there will be one for you that will give positive results!

I also find meditation helps clear bad thoughts.. I always used to think mediation was wierd, but now love it! Just 5-10mins a day (before bedtime works for me) makes a huge difference. If you want to try it 'smiley minds' is a great app! short but effective sessions.

Keep believing and keep fighting! 🙂

Re: Just been diagnosed with incurable bowel cancer

Tobi — Tue, 14 Mar 2017 05:09:22 GMT

Don't panic about being told you are terminal. It doesn't mean you are dying. I was diagnosed with endometrial cancer when I was 37, 4 years next month. Mine came back after 12 mths (had a radical hysterectomy, chemo and radiation) in my liver. So went on hormone blockers for 9 mths which got rid of it for a 9 mths, then more chemo, and 6 mins after finishing chemo it was back again. Always in the liver. So had a liver resection in December. I was told 2 to 3 years last year. But who knows.... I could be hit by the proverbial bus before then!

You do have really down times but there are also good times. I look at it as we are all going to die. Unfortunately we know it may just be sooner than what we thought. So now I don't worry about the little things. I certainly don't look the way I used to (thank You chemo, menopause and hormone blockers! 🙂 ) but I am still here and able to enjoy life.

We all just have a new normal.

Tobi

Re: Just been diagnosed with incurable bowel cancer

Deano65 — Tue, 11 Jun 2019 20:56:41 GMT

Hi there

Sorry to hear of your diagnosis. Stay positive.

I was diagnosed with incurable stage 4 bowel cancer in May 2017. It had spread to my lymph nodes, liver and lungs and I was given 2 years. I started chemotherapy in June 2017 every fortnight. By May 2018, my liver and lungs had a complete response, no sign of cancer cells. In August 2018 I was classed as a miracle and told that they could now operate. I had my lymph nodes removed and a section of my bowel. In November I was told that I was cancer free. Unbelievable news! Unfortunately in January 2019 my CT scan showed small regrowth in my lungs because I haven't had chemo since August 2018. My bowel and liver are still cancer free. I have no primary tumour anymore.

I have never been sick with the chemo though I do get mouth ulcers and diarrhoea but you learn to live with it. I don't let the cancer stop me doing anything. I have had 5 hours of chemo today and a 46 hour infusion going in until Thursday but tomorrow I'll be walking 5 miles with my dog, taking mum to doctors, hairdressers and shopping and out for lunch then back home for another dog walk. I can also fit in a week's holiday between treatments. World First insurance are fantastic.

We can't change our diagnosis but I always think they wouldn't give us treatment if they didn't think it was worth it and whilst we are having it they are developing new treatments. I have already passed my two years and aren't ready to go yet. I never imagined I'd be in this position after my diagnosis.

Stay positive, you are young.

I am currently walking 100 miles this month for candlelighters.

Re: Just been diagnosed with incurable bowel cancer

Hellfire-sp — Thu, 12 Sep 2019 12:12:12 GMT

Thank you for your comment Deano65. It is so much like my diagnosis which I got 3 weeks ago and treatment plan that it gives me hope!

Re: Just been diagnosed with incurable bowel cancer

PhilPepper — Wed, 25 Sep 2019 22:58:49 GMT

Hi Mel

I'm sorry to hear about your diagnosis. I was diagnosed with stage two bowel cancer. Bumped it up to three after surgery. The pathology on my lymph nodes was... unsatisfactory. So Stage three means chemo for an insurance policy. Liver, kidney, bladder all normal. A couple of spots on my lungs to watch, which is hopefully nothing.

This is not an easy journey for anyone. Even when I got the diagnosis of stage 2, I still thought it was a death sentence and it took me on an emotional rollercoaster which I've never experienced before. On the upside, my treatment finishes this year and I'm starting 2020 with a fresh outlook. Regular scans and checkups are in my future. At 47, I'm feeling quite young, but when I sit in the chemo unit and look around, I feel extra young. So many older and more fragile people going through chemo. It is a sad reality of this disease. I have no doubt that cancer will come back and will probably get me in the end. Ho hum. Nonetheless, the experience has made me a new person. A better person.

I am hoping your diagnosis is a worst case scenario. I wish you all the best with your treatment. I recommend you keep coming back to this forum. It has a lot of power to help you, but you can also help others in similar situations just by sharing your experience.

Good luck.

Cheers

Phil

Re: Just been diagnosed with incurable bowel cancer

Rowie34 — Tue, 29 Oct 2019 09:51:35 GMT

Hi Mel,

I feel I connect a little with your story. I am about to turn 35 in less than a week and I was diagnosed with stage IV gastric cancer four weeks ago. I switch from wanting to cry about it and curl up in a ball, then to feeling I can handle it all.

It's been a whirlwind of a month and I expect it to be for the next few months.

Hope to help each other out if you would like to stay in touch.

Rowie

Re: Just been diagnosed with incurable bowel cancer

Deano65 — Mon, 01 Feb 2021 18:51:24 GMT

Hi there, I was diagnosed with incurable bowel cancer with spread to lymph nodes, liver and lungs in May 2017. I was told I was incurable, would have palliative care, surgery not possible and I would have 2 years.
I have had panitumimab, iranitecin and flouracil 5fu every fortnight with breaks in between. In July 2018, there was no trace in my liver and lungs and I was allowed surgery
I had a bowel resection and lymph nodes removed. I still don't have my primary tumour though I had a regrowth in my lungs. It will be 4 years in May, far more than I ever imagined.
Stay positive and don't give up.

Re: Just been diagnosed with incurable bowel cancer

stevepath — Wed, 30 Jun 2021 02:36:19 GMT

It is happy to know that you are now cancer-free. I hope you are having a great time with your family without worrying.

I would like also to share the power of bowel pathology test which can your life.

https://knowpathology.com.au/simple-test-save-your-life/

Re: Just been diagnosed with incurable bowel cancer

Deano65 — Tue, 11 Jan 2022 09:01:24 GMT

Hi Mel, sorry to hear about your diagnosis. I was told I had incurable bowel cancer in May 2017 which was in my bowel, lymph nodes, liver and lungs and given 1 to 2 years. I responded so well to treatment that in September 2018 I had my lymph nodes and section of bowel removed, my liver remains cancer free and I just have 2 nodules in my lung which are treated with chemo. It is now getting closer to 5 years.

I stay positive, have written a children's book and take each day as it comes. Nobody knows how you will respond to treatment so I wish you good luck.xx

Re: Just been diagnosed with incurable bowel cancer

Michelle77 — Sat, 15 Jan 2022 02:38:01 GMT

Hi there 😄 iv been told the same incurable bowel . I was told in sept 2021 and have had 5 IV treatments in hospital and I am on chemo tablets . I kno how u feel when your told it’s incurable . But stay positive as I am trying so hard too as well but I have too. I had some scans since then and all is shrinking and that was some good news . Treatment is effective and will be for u too. I can be here for u as we both have the same. I have down days and probs need to speak to ppl who ‘get it’ !

Re: Just been diagnosed with incurable bowel cancer

Lol099 — Fri, 14 Oct 2022 13:23:23 GMT

Hi i know this is an old thread but, I have just been told a very similar diagnosis on Tuesday and start chemo on Tuesday very quick! Too big to operate on atm so I’m really just waiting to start chemo and praying that it works.

im 38 mother to a 3 & 5 yo so this is the hardest part for me and I will fight as hard as I can but goodness me what an emotional roller coaster, switching between is this a dream to bawling.

im glad to read all your stories as most give me hope in these early stages and I’m really focused on being as positive as possible.

Re: Just been diagnosed with incurable bowel cancer

Deano65 — Fri, 14 Oct 2022 13:36:59 GMT

So sorry to hear your news. Its a very difficult time for you. I was given 12 to 18 months back in May 2017. Luckily my body responded well to chemo and I'm still here almost 5 and a half years later. I do believe staying positive is the key. I will always be terminal but live the best life I can. I get chemo breaks and learn to tolerate the side effects.

Good luck. You can do it.xx

Re: Just been diagnosed with incurable bowel cancer

Melb088 — Thu, 27 Oct 2022 19:21:02 GMT

Hi Rowie,

My name is Melissa and I really connected with your situation. I have recently turned 35 and have been diagnosed with Stage 3C bowel cancer-with more investigations to do on my liver pending. I keep switching between my emotions too and I am so afraid that I wont be able to be remain strong and handle it, for my families sake.

I know you posted this back in 2019 so I am hoping to hear from you now on how you experienced this journey and if you would have any advice that you could give me please?

Thank you, hope to hear from you soon.

Melissa

Re: Just been diagnosed with incurable bowel cancer

Melb088 — Thu, 27 Oct 2022 19:25:53 GMT

Hi Lol099,
My name is Melissa. How is everything going for you? I am also newly diagnosed - within a week - and I am 35 and trying to wrap my head around it all. yes talk about an emotional roller coaster and I'm so worried about my family and how they must be feeling too. I'm hoping to stay focused on being positive and holding onto hope too. So if you would like someone to talk to I am here.
Mel x

Re: Just been diagnosed with incurable bowel cancer

Melb088 — Thu, 27 Oct 2022 19:31:07 GMT

Hi Michelle,

My name is Melissa and I am sorry for your diagnosis too. I have just recently been diagnosed and I am looking at receiving chemo in the next few weeks. So far everything has been unclear and a waiting game. Do you mind if I ask you how your treatments have been? I'm really glad that you were given good news about the shrinking, what does that mean for next steps?

I hope you would like to chat, if so I'm here for you too.

Thank you,

Mel x

Re: Just been diagnosed with incurable bowel cancer

Lol099 — Fri, 28 Oct 2022 10:15:50 GMT

Hi Mel wow our stories are so similar I would love to get in touch if you are ok with that maybe we could do this journey together.