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Stage 4 Bowel Cancer at 46


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#1 mum2brodie

Posted 07 January 2016 - 10:58 PM

Hi I am a long time EB member.  Took a break for a few years when the site changed.

I have been suffering from what my GP thought was IBS and stress.  To cut a long story straight lots of silly test taken over a year and I just learned to live with the pain until it got so bad that I demanded a colonoscopy.

Woke from colonoscopy to be told found a tumor will need an operation to remove part of my bowel.  Fast forward two days no mention of the C word.  Have a CatScan and I asked the lady why I was there and she was the first person to tell me it was "To see if the cancer had spread".  She wished my good luck on my cancer journey. Then everything was rushed through told the next day that I had moderate bowel cancer.

My world came crashing down. I have one child conceived from IVF who is high functioning Autistic he is my world.  And topic of many EB conversations over the years.

Had my 2/3 rd of Colon removed on the 13th October. Told a couple of days later I was :Now cancer free" from my surgeon even though the lymph nodes hadnt come back.   2 days later I am being sat down to be told that there was cancer in 9 of the 30 nodes they took out. No problem just do mop up chemo.

I was out of hospital one day and had to go back due to infection.  They did a catscan and found enlarged nodes on the back abdomen. I was told it is probably due to the surgery not to worry.

After 1st Chemo I ended up back in hospital due to chest pains.  They did another Cat scan and the nodes hadn't gone down but also found enlaged nodes in my neck.  Probably due to having my chemo port put in.  Had a PET SCAN was then told I needed to have biopsy of my nodes in neck.   On the 23/12 I was told I am no longer Stage 3C and that I am now incurable Stage 4.

My world has fallen apart..... All my dreams and my son. sh*t I can;t look at him without crying.  I lost my good friend to this sh*t cancer nearly 3 years ago she was only 36 with two young children.  And here I sit.  I would sit on the toilet I knew I had all the signs I could hear her voice telling me to get a second opinon.

I know I have an excellent Oncologist.  I know I want to beat this cancer or I wont let it beat me.  I would love to hear any good Stage 4 stories.  I feel positive that modern medicine will keep me around for a while.  I feel great I actually feel better (when not doing chemo) better with no pain like the last 12 mths.

Thank you for reading my story.  Sorry if its all over the place.  There has been so much more that happened in between lol.

Felicity

Edited by mum2brodie, 11 January 2016 - 10:25 PM.


#2 anne111

Posted 07 January 2016 - 11:13 PM

I don't post much (or at all) but just wanted to say how sorry I am for all you've been through and to wish you all the best. I love your positive attitude and am sure it will help you in the fight you have ahead of you. Take care x

#3 leosmum

Posted 07 January 2016 - 11:13 PM

Oh OP, that is heartbreaking. I'm so sorry to hear of the ordeal you're going through.

Thank you for posting. I'm going to put my big girl pants on and book in for the colonoscopy I've been putting off.

I wish you all the best with your treatment and I hope someone comes along who has a personal experience to share. Thinking of you xx

#4 Manicmum

Posted 07 January 2016 - 11:15 PM

Oh no!
Mumtobrodie, I have no stories. Just sending you all the strength I have.

Xxx

#5 marple

Posted 07 January 2016 - 11:24 PM

OH Cripes. Well that really sucks. Is there anything anybody could do to help you out?
I'm so sorry.

#6 mum2brodie

Posted 07 January 2016 - 11:27 PM

Please don't put off getting one done Leos mum.
My sister is 34 and due to my results she had one done and she also had polyops.  She gets her results tomorrow.
Both her and I have always had what we thought was IBS.

It does present like IBS. My GP said I was too young.
My mum nearly convienced me not to do it.

I wished that I could go back 12 mths and demand a colonoscopy now.  I needed to be more in tune with my body.
and in control of my Dr.

Any poo tummy issues longer than 3 weeks please go and ask for testing.

#7 becstar101

Posted 08 January 2016 - 12:04 AM

So sorry to hear about your troubles. I'm not sure if you have heard of a member here, Julia, who has a blog about her fight against bowel cancer? I believe she is now 2 years post diagnosis, and has had some ups and downs but is doing quite well. I've tried to link to her blog, hope it works!

http://fivefairiesandafella.com

#8 LUV-MY-KIDS

Posted 08 January 2016 - 12:14 AM

So sorry to here about your BC diagnosis.  Cancer is so not fair. Cancer really sucks.

My sons dad passed away from bowel cancer.  He was first diagnosed early 30s.  Like you mum2brodie, they did lots of tests over 9months came up with lots of things it could be but it just got worse.  I remember the GP saying he had every test except for a colonoscopy, let's do that, you are too young for Bowel cancer but at least you know we have tested for everything.  Sure enough stage3 bowel cancer.

So anyone if you have pain and bowel issues get one done, if it is nothing, great, if not early treatment is the key. If your GP says your to young tell them you would rather rule it out with the test than go on statistics.

Unfortunately, 4 years after last chemo treatment it returned, stage 4.  He lived 3 and half years, he was only 39.

Lots of positive thoughts for you and your family.  
Good luck with your treatment and enjoy your chemo free time.


#9 ..-

Posted 08 January 2016 - 12:20 AM

I am sorry. I am thinking of you. Sending strength.

#10 *Nasty*Squeekums*

Posted 08 January 2016 - 12:26 AM

I coudnt read and not leave without at least this :bighug:

#11 KT1978

Posted 08 January 2016 - 05:26 AM

My dp went through stage 3c four years ago. He had 30cm of bowel removed, an illieostomy, six months of chemo then an illieostomy reversal.

He ignored the symptoms for a few months out of fear but lucky his gp ordered the colonoscopy straight away.

You must feel so angry about the gp brushing you off.

Don't lose hope. We were told stage 4 has 8% survival rate but that includes mostly 70-80 year olds who are the bigger group diagnosed. Your oncologist will do everything they can and your job now is to just look after yourself.

#12 Sancti-claws

Posted 08 January 2016 - 07:21 AM

Oh mum2brodie, how awful.

When my DH's ex was first diagnosed a lot of people around her fell apart - it was truly horrible for her, that she had to then emotionally support those who should have been her support crew.  Luckily for her, one sister with medical training was able to read the riot act and get them all lined up.

I hope you have a most awesome team to work with in your battle.

#13 lurfest

Posted 08 January 2016 - 07:35 AM

Oh how devastating.

I would consult a lawyer.  I know that sounds cold, but in your position, I'd want to sue the absolute pants off your GP.

#14 XieXie

Posted 08 January 2016 - 08:30 PM

View PostCatlover9, on 08 January 2016 - 12:14 AM, said:

So anyone if you have pain and bowel issues get one done, if it is nothing, great, if not early treatment is the key. If your GP says your to young tell them you would rather rule it out with the test than go on statistics.

Some families get a lot of bowel cancer and at very young ages i.e. under 50y. Look at your family history - are there bowel and/or endometrial (uterine) cancers? Then you may have a predisposition to cancer running in the family.

http://www.cancerins.../lynch-syndrome

Lynch syndrome is kind of rare (only about 5% of all bowel cancers are thought to be due to Lynch syndrome) but it does have implications for the whole family, so worth knowing about.

Any cancer under 50 is suspicious, and if there are other bowel/endometrial cancers in the family, it's worth visiting a Family Cancer Clinical for expert assessment.

OP, it was so scary reading your post. I don't even know what I would do with that news. Here's hoping you are the exception to the 'stage 4' rule. Lots of love.

Edited by XieXie, 08 January 2016 - 08:32 PM.


#15 Therese

Posted 08 January 2016 - 08:37 PM

mum2brodie, I remember you and I wish we were seeing you back here for better reasons.

I'm really sorry that you have this diagnosis. Please let us know if there is anything we can do to support you.

#16 suzy-c

Posted 08 January 2016 - 09:09 PM

I'm so sorry. It broke my heart to read you say "all my dreams and my son". I can't imagine how that would tear at you, as a mother and also as a person. What a cruel fate. It isn't fair, after working hard all your life and making a home for your beautiful child.

I don't have any experience with this sort of thing, but I have a dear friend who recovered from Hodgkins Lymphoma, despite being HIV+. No one could help with his pain or his fear, but the friends who cleaned his house, cooked his meals and sent a hairdresser round to tidy him up, really boosted his spirits.

I hope you have a team. If you don't, let us know. xoxo

#17 Burro

Posted 08 January 2016 - 09:21 PM

I really felt your love and pain reading that post. Im sorry that you and your little family are going through this. Ive been putting off a pap test which is so easy to do when life is hectic. Sending you hugs and strength x

#18 coolbreeze

Posted 09 January 2016 - 09:13 AM

Oh no...I remember you so well and we cycled together closely in 2002. On ivf connections and went to some outings together. I think an outing at the lake when the kids were very tiny?

My heart skipped a beat when I read this, sat at my computer shocked and there is nothing I can say to make you fell better but just wanted to let you know that I am thinking of you, your family and your lovely boy. He would have just turned 12 is my guess in November? My dd (s) was born in July 2003.

Please know I am saddened and shocked you are going throught his. Sending hugs and strength to you.
xx
CB

#19 DirtyStreetPie

Posted 11 January 2016 - 03:13 AM

My mum had stage 4 bowel cancer. She had surgery to remove the main tumour, then aggressive chemotherapy and radiation over a six-week period to tackle the secondary tumours.

After this, they re-scanned her. All the cancer was gone, except for a few tiny spots on her liver and lung. She was pretty much in perfect health again!

Sadly, she died eight years later, BUT only because she refused follow-up treatment for the remaining little spots, and she refused annual checkups, etc. I'm certain that if she had the follow-up treatment, she'd still be with us today (or she at least would have met her grandchild). That little spot on her liver grew into a huge tumour that took her life.

So my point is, it IS possible to get better. Just don't do what my mum did afterwards!

PS. She also took a few natural supplements during her treatment (in addition to the chemo and radio, not instead of it). If you want to know more, PM me.

#20 mum2brodie

Posted 11 January 2016 - 10:40 PM

Thank you everyone for your kind replies.
Having this really is such a lonely journey that I wish no one to have to travel.

I have been tested for Lynch Syndrome and I got the all clear. My sister (33yrs) has pylops and My Mum is getting tested on the 13/1/16.

:yes: Hi CB I remember you.  Yes Brodie is now 12 years old.  It was his Birthday.  

I am trying to get some therapy in.  I went to see a lady last week but she was talking to me like I was dying next week and needed to start making plans for wills etc.

Very good point about the stats being based on much older people.  I believe with each day something new is being discovered in the cancer field.  I just hope that I can be that 7%.  I am not ready to roll over and let this cancer beat me.

Although on Chemo days and follow ups its really hard.  I feel bad I am home its school holidays and the heat is too much for me to handle.  So we are at home. :sick:

All I have wanted for the last few years is to not be working during school holidays.  Now I am home.

Did I also tell you I lost my job the day I found out I had cancer.   The joys of being a casual.

I haven't thought about taking legal action.  My Dr has been very good to me in the 15 year she has been seeing me.  Even the bowel surgeon said I had one of the worse cases of IBS he had seen on top of my bowel cancer.

I have no pain now except from the chemo which is such a shame.

I have one regret that I didn't do something earlier.
And also with regards to the Papsmears please get it done. I had early cervical cancer in my 20's.  I would swap anything for early now for this advanced cancer.

Make sure you tell the people in your life you love them.  And hug your kids just that little bit longer.
xx

#21 triangle

Posted 11 January 2016 - 11:39 PM

Couldn't read without commenting, but wishing you all the very best in your health journey.

#22 28 Barbary Lane

Posted 12 January 2016 - 07:26 AM

Omg mum2brodie you have such an amazing attitude, very inspiring. sorry I can't offer any helpful advice but just wanted to say thank you and I'm going to book in a pap scan that I've been putting off. All the best for your treatment x

#23 WibbleWobble

Posted 13 January 2016 - 07:24 AM

I'm so sorry to read this.

I was diagnosed with bowel cancer nearly two years ago at the age of 43.

If you haven't already done so, I recommend joining the bowel cancer fighters Australia Facebook page. It is generally a pretty supportive group with several members diagnosed stage IV either in active treatment or remission. It might help you feel less lonely.



#24 DragonHorse

Posted 13 January 2016 - 07:35 AM

I had to comment after reading your post to wish you good luck and send positive energy and virtual hugs your way :bighug:

#25 steppy

Posted 13 January 2016 - 08:30 AM

How scary for you! I am also sending you good luck and positive energy.

May I ask, what were your symptoms? I have always had weird bowels, with possible IBS indicated but sometimes I wonder if it is more ...


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