topic Re: Bowel / Colorectal Cancer in Living with cancer

Bowel / Colorectal Cancer

ES — Wed, 07 Jun 2017 07:23:53 GMT

Hi, I'm new here and would love to hear from anyone who has , or has had, bowel cancel. Thankyou.

Re: Bowel / Colorectal Cancer

Katekat — Fri, 09 Jun 2017 03:23:30 GMT

Hello and welcome to the Community @ES!

How are you doing today?

There are definitely other people here who have had or are living with bowel cancer. Would anyone like to offer any words of insight to ES?

Re: Bowel / Colorectal Cancer

edie — Sun, 11 Jun 2017 02:43:55 GMT

Hi ES

Can you tell us a bit more about your situation?

I was diagnosed with bowel cancer 6 years ago, I had surgery and luckily didnt need any other treatment. Since the surgery I have been doing really well without any ongoing problems - so long as I dont eat too many nuts or curries!

Re: Bowel / Colorectal Cancer

ES — Tue, 13 Jun 2017 09:17:01 GMT

Hi Edie,

Sure.......

I was diagnosed last year with stage 4 bowel cancer. Perforated tumour, surgery, 6mths chemo which ended in Nov last year, have now got severe peripheral neuropathy no proprioception awareness of hands and feet, but otherwise chemo went well. Then suddenly CEA markers went up in March and tumours have returned . Laparoscopy, colonoscopy and histeroscopy due in two weeks time to see what my pci readings are. If low, then I'm scheduled for the Peritonectomy /hipec op. They'll also take care of the large hernia resulting from last bowel/tumour op.

Lol, love the nuts and curries comment.

Re: Bowel / Colorectal Cancer

Morenike — Tue, 26 Jun 2018 04:25:57 GMT

Hi there, this is my 3rd bowel cancer diagnosis

2016 I was diagnosed the tumour had burst through and I was in excruciating pain which was how it was found I had surgery and then followed by 6minths chemo. Follow up scan in jan 17 showed the tumour had been growing in my pelvic cavity during chemo it was inoperable on the GC so I went to peter Mac in Melbourne. I had 6weeks radiation then followed by another surgery, I responded so well to radiation it was a miracle. I needed a temporary colostomy bag which was reversed in nov17. Then jan18 follow up scan shows tumour is back again now. I chance of surgery but trying chemo again and after chemo heading Back to peter Mac to try something called cyber knife

Re: Bowel / Colorectal Cancer

Roselee — Wed, 17 Oct 2018 00:33:03 GMT

Yes you are now in my club of Bowel Cancer. Its a horrible club to be in but there is lots of support out there.

I have been battling for the past 6 years and yes its draining and your life certainly does change, sadly.

I am not the norm though as everything that should work hasn't for me, and my specialist team of 6 can't explain me medically. It has come back every 12 months requiring both surgery and chemo. Surgery is no longer an option for me and my chemo is no longer working. I have been on fortnighlty chemo for the last 18 months. Its been hard but the alternative is out of the question. I have just now been offered to have Radiation to try and make the tumour go back to sleep (not active) as they say so fingers crossed. Its scary as i have never had it but sometimes we all have to be brave, put our big girl knickers on, and take the plunge. My team say they also can't explain how i am now. I was told that 18 months ago when i received my Terminal diagnosis, that now they would not think that i should look healthy and I do, my bloodwork is that of a normal healthy person and it shouldn't be, and that they would have thought that by now I would not be working at all and I am working 4 days a week. The only thing i can say is that I have the most positive of attitudes and a shear determination that this bastered of a thing isn't going to stop me. I truly believe that a positive strong attitude goes a long long way. Be strong. Be a fighter. And dont think for a minute that this horrible thing can stop you. Its just a bump in the road. I say this to myself each time it comes back. Take care you strong woman. Roselee

Re: Bowel / Colorectal Cancer

Morenike — Wed, 17 Oct 2018 00:52:24 GMT

Hi Roselee how are you doing today? Hope you are ok. Which hospital are you doing your checks? You know sometimes it’s a good idea to get a second opinion that’s what saved me.

The second time I was diagnosed of my fiancé had said he wasn’t going to accept what the said and did some research, I wouldn’t be here. So now I have a medical team on the Gold Coast and another team at the Peter Macallan centre in Melbourne.

Re: Bowel / Colorectal Cancer

Roselee — Wed, 17 Oct 2018 01:11:23 GMT

Im at the Mater. I am really happy with my team there. My surgeon is the only one in Qld who does the type of surgery i needed and my oncologist is very high in his field. I researched the hell out of chosing an ocologist and i landed on a great one. I guess I have had my team for the last 6 years, and i put all my faith in them - right or wrong. I feel so comfortable with them and i think that goes a long way. I don't feel like a number. I am so glad to hear you have found a good team, as its important to have that connection.

I so hope you get the desired results from them.

Hugs

Roselee

Re: Bowel / Colorectal Cancer

Morenike — Wed, 17 Oct 2018 01:17:41 GMT

Hiya am so glad you have a great team and you are happy with them. Same here it’s so nice when you don’t feel like a number. Am so sorry you are going through this is such a struggle. 6 bloody years. I have been battling mine for 3 years now. It’s like how much more. What treatment are you doing now? I just finished radiation this is my second time for rad and it’s also the last I can have. I have an appointment next week to see oncology so fingers crossed.

Hows your day today?

Re: Bowel / Colorectal Cancer

Roselee — Wed, 17 Oct 2018 01:23:56 GMT

I'm not 100% sure of what i will do next. My oncologist has given me 2 weeks of chemo which i am so grateful for. After 18 months worth of chemo every 2 weeks i'm glad for the break. I have another chemo option but it will make me lose my hair which i'm not too happy about or Radiation. I haven't had it before and have no idea what to expect. I am meeting with the Radiation Ocologist shortly to get the run down and then i can decide which treament course i will take. Both options are pretty crappy really but I need to choose one i guess. After 6 years its hard to imagine life without treatment. Hopefully your 3 years worth of fighting will pay off. Its such a horrible thing and no one can understand unless they have experienced it. I only take advice from people that have sadly had cancer as they are really the only ones who can understand even just a bit of what is happening and how we feel. Sometimes friends and family try to give advice but they really have no idea. Its nice that they are there for support though.

Hugs

Roselee

Re: Bowel / Colorectal Cancer

Morenike — Wed, 17 Oct 2018 05:47:51 GMT

I know I totally get you unless you have or going thru this you have no idea. Well I just finished radiation and it’s my 2nd time I will take it over chemo any day because both time that I have had chemo I was really sick and the bloody thing didn’t even work and last time I had radiation I responded really well and I also prefer the radiation side effects. Don’t get me wrong it’s not easy breezy I have burns and inflammation and the fatigue is crazy. I can’t have anymore radiation after this, I don’t think I have asked what cancer you have and what stage if you don’t mind me asking

What chemo did you have?

Re: Bowel / Colorectal Cancer

Roselee — Wed, 17 Oct 2018 06:00:40 GMT

Well i've so much chemo over the years. I have bowel cancer. My histoy has been this

1 Jan 2013 - First bowel cancer operation which they got it all, seemingly followed by 6 months of chemo but I can remember what type

2. Jan 2015 - Second bout. I had what they call a HIPEC which is where you get opened up from breast to pelvis, they take out the tumour and anything non essential, including overies, gall bladder, apendix, omentum, and i had 2 hours of internal heated chemo which is supposed to get into evey knook and cranny to prevent any future cancer cells.

3. Feb 2016 - third bout - surgery and chemo

4. Jan 2017 - fourth bout - surgery ( they were able to get most tumours but the main one was around my leg arteries so they couldn't touch it. ) I then started fortnightly chemo since April 2017 - now. This is when i was classed as terminal. Currently i'm on Avastin and Folfox. This made the tumour go to sleep, so it just has not been active for some time.

5. Oct 2018 - the tumour has decided it didn't want to be asleep any more so now I need to look at a different type of chemo or radiation. I think i said earlier that unless the dr tells me something that freaks me out, i will try radiation. My boss actually had radiation about 2 years ago and breezed through it. I guess it depends on the strength, the frequency and each individual as to what side effects I will actually get. its just a complete buggar of a thing really.

Re: Bowel / Colorectal Cancer

GS — Fri, 25 Jan 2019 03:18:29 GMT

Hi Rosalee and Morenike,

Sending you both positive thoughts as you continue along your cancer journey. My mum was ES who posted the original question and I know she enjoyed the interaction of the Cancer Council community. Sadly she passed away last year.

Thank you for your support and sharing your stories. Whilst cancer is so common, I feel that the realities about living with cancer and going through the various treatments is not as widely discussed.

Your positive spirits will ensure you get the most out of each day, and sometimes that is just a smile over tea which is enough for that day :):)

All the best.