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Life with bowel cancer

HH79

A Jolly Good Rant! Give bowel cancer more attn!!!

Right I am watching ‘Lorraine’ (Yes I know an error in itself) talking about Trisha’s Breast Cancer battle and Lorraine keeps saying ‘yes yes...body image...especially with breast cancer!’ grrrrr! These people know nothing. Yes breast ca is awful but why are people so fixated on boobs! What about all the people with removed rectums or similar from bowel cancer mets!!! I am SO fed up with the endless funding, advertising and prioritising breast cancer has, when lung and bowel Cancer are biggest killers and have poor 5 year survival at stage 4 vs breast cancer one of the highest at 22%!!!! I saw on news Prince William met with the now joined Bowel Cancer UK & Bbcancer and the lady said, there still isn’t the awareness that there should be about bowel cancer, it’s the 2nd biggest cancer killer and people need to be more aware! Grrrr. :x::x:
To add, I don’t want to cause any offence to breast cancer sufferer or friends of etc, this is more about raising Bowel cancer awareness and it needs more funding - Oxi etc been around decades!!! Rant over. For now ;) :x::x:

HH79

And why is Avastin not on NHS!! Defo mention in your meeting CEO Bowel Cancer UK today @Scattyblonde when it is defo helping some advanced bowel Cancer px xx

Scattyblonde

@HH79 I'm focussing on getting better diagnosis, I think a focussed campaign will be more successful.

I believe Avastin used to be available on the NHS but is no longer as I believe cetuximab was proven to be more effective, its probably all something to do with NHS funding but I am no expert in this area although I am sure I will become one once I start my next lot of treatment and see how it is working or not ;)

Baxter2

There was some discussion on ‘the wright stuff’ this morning following on from Tessas speech in the House of Lords yesterday. (I missed most of it I think) Matthew was hoping it would generate much more interest (and funding) following the standing ovation. He mentioned bowel cancer and the hope of lowering the screening age to 50 as in Scotland.

K????❤️

HH79

Hi @Scattyblonde that’s great you are focussing on one area. Yes Cetux v effective but doesn’t work on all mutations including BRAF etc whereas Avastin (should!) suit all. I know so many had terrible symptoms and a huge delay getting diagnosed so it’s good what you’re doing. Some of us - me including - literally had no symptoms at all until the tumour grew to such as size it then caused bowel obstruction and only that catastrophic pain led to A&E visit and thankfully, a speedy scan, diagnosis and operation. My tumour and others started in large intestine and there provides evil cancer and big area to grow in ‘silently’ vs tumours in Lower colon which come with obvious warning signs such as blood in pooh. If I get anywhere re Lorraine or similar, my passion is better life extending treatment for all of us already diagnosed and those that will be, like Breast cancer etc has. That’s why things like Avastin not available to all makes me cross because for some (like all treatments, doesn’t suit all) it really does work. Lots love and I’m following you on Twitter! :x::x:

Scattyblonde

@HH79 there are just so many things that need attention and changing! I really need to look more into treatments, I guess being at the beginning of my stage 4 journey I am not yet that well versed in the available treatments. Thank you for the follow on Twitter, new to that too! :x::x:

Barbara

@HH79 @Scattyblonde The evidence on avastin is very unclear. There are no biomarkers to tell if it will work or not. I have been considering self-funding and oncologist keeps changing his mind on whether it would be worthwhile. At one point he said I might as well drive round with the car windows open throwing ten pound notes out! If I had started taking it I would be putting my good results down to it whereas it seems that irinotecan and capecitabine are currently doing the job. No cetuximab as RAS mutant so getting only the bog standard drugs which are so far, so good. But another scan on the horizon and who know what that will bring?

HH79

Yes I’m not quite sure on Twitter..I think it’s a bit too clever for me ;) :x::x:

HH79

Hi @Barbara just read your profile and you’ve done well. Good luck with your scan. My results next week. From one Peritoneal spreader to another :x::x:

Barbara

@HH79 thanks. My oncologist said - I paraphrase - I have no idea why you are doing so well so you had better carry on with everything you are doing. This was when 8 expected his approval for deciding to give up cannabis oil ( the legal stuff) as I had come to the conclusion there was no real evidence for its efficacy. So I’m still taking it - had been going to have a couple of good bottles of wine instead on my non chemo days! Hey ho!

HH79

Grrrrr

HH79

Article refers to how breast cancer gets more funding etc and yet bigger killers are bowel & Lung. On Shine young persons Fb, one lady is crowd funding to get Avastin. She’s already on lonsurf. So wrong this isn’t on NHS! :x:

charly

Couldn’t agree more. I read the article this morning and felt thoroughly narked off. Even my friend who has breast cancer says bread t cancer gets so much more funding and exposure. Thanks for sharing in the forum. :x:

Dave F

Good on you HH79 and Charly for agreeing.

RosemaryA

@HH79 @charly @Dave F: we were discussing this story in the office today and also Tessa Jowell's very moving speech last week. Drawing direct comparisons between funding and exposure for one type of cancer versus another isn't something that we'd feel comfortable with but we agreed that the breast cancer campaign shows just what can be achieved and is something for us to emulate. We're working on it!

Dave F

Hi Rosemary, Thank you for your message and I like the idea of getting more support for the sufferers of Bowel Cancer. We will get up there with the others and get more support for our cause.

HH79

Hi @RosemaryA sounds great!!! I agree you wouldn’t want to flag breast cancer but whenever I mention certain facts on others, people are shocked as everyone assume Breast cancer to be ‘worse’ as always in news. I just wrote below on my FB and don’t mention the world Breast once but lots of people have said ‘didn’t know that’ so whatever you do, do something with a bit of a ‘shock’! Maybe combine stats on the increase in bowel cancer in young people too? Lots of case studies. Happy to help if you want any mrshelenhandley@hotmail.co.uk
:x::x::x:

HH79

charly

I understand why drawing direct comparisons between funding for different kinds of cancers is not the way to go and I don’t know what other people’s experience is, but I do feel bowel cancer doesn’t get enough exposure. Other “small” things I have noticed are that there are support groups for breast cancer and prostate cancer but when I enquirer at my local Macmillan centre I was told that there are no support groups for my type of cancer. Very little info given before treatment - much the same as snowsister - most of the good advice has been from this forum. A big thank you to all - it really is a great support system! ❤️ :x:

david watt

@HH79
www.bbc.co.uk/news/uk-wales-42946363
Waiting times for tests in wales in the news in above article.
Also the issue of ranking for treatments, ranked 25th out of 29 countries for survival from colon cancer. That really is very poor in terms of survival considering all that is said about the NHS and how modern it is compared to other European countries, saw another world wide comparison elsewhere which placed some south American countries above UK.
David

HopsiFAP

I’m very late to this thread but agree wholeheartedly with much has been said. I’ve seen how much good work is being done by the CEO of Bowel cancer UK Deborah Alsina and people like Deborah James (Bowel Babe) and obviously lots of people on here and I guess we just have to keep going, For the past year or so I’ve been writing a blog and have had so much positive feedback from it. It seems to have really touched people’s hearts and got people talking. As @HH79 says we need to get it in the public domain more. Losing the ability to poo “normally’ is a massive fundamental change and it is so much more common, and especially in young people, than people think. I can’t even imagine what it’s like to loose a breast but as a result of my tumour and genetic makeup I’ve lost the whole of my colon, rectum, anal canal, bladder, ovaries, part of my small bowel, gall bladder, as well as part of my pancreas and stomach but we don’t really ever hear about that type of loss in the media.
I guess the more of us who feel up to speaking out can only help and step by step we will get there.
As an aside is there anyone on here who has also had a pelvic exenteration?