Just been diagnosed with incurable bowel cancer

[EcoMuse]

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

[Margaret_CCNSW]

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

[CaptainAustrali]

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.

[EcoMuse]

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

[Nicbrown]

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! 🙂

[Tobi]

Hi

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

[Deano65]

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.

[Hellfire-sp]

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!

[PhilPepper]

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 

[Rowie34]

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