Very worried - would like advice

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Worriedwife3
Posts: 2
Joined: Tue Nov 21, 2017 1:45 pm

Very worried - would like advice

Postby Worriedwife3 » Tue Nov 21, 2017 2:09 pm

Hello, I'm new here. Looking for advice. I'm in the UK, so NHS waiting lists are very long.

My husband has had bleeding from his anus on and off for over ten years and I am very worried. The blood is bright red and on the toilet paper after a bowel movement.

There seems to be no blood in the toilet, except for three occasions, and it was on the side of the toilet rather than in the water.

He has been to see his GP about eight times and has been dismissed each time, as likely to be haemorrhoids and unlikely to be cancer due to his age - he's now 41. He had a digital exam but there was nothing there.

He has no pain but has been very very tired recently.

He went to the GP recently to raise the issue again and this time he is being referred to hospital for a sigmoidoscopy.

I am so worried to the point I am very tearful and emotional all the time. Any advice would be appreciated, as I have lost family to this terrible disease.

Utwo
Posts: 285
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: Very worried - would like advice

Postby Utwo » Tue Nov 21, 2017 7:32 pm

Ten years of on and off bleeding doesn't look like cancer to me.
There are other options like diverticulitis, Crohn, colitis etc.
You need to wait for results of the colonoscopy.
There is no way around these waiting times.
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder, lymph node, pancreas

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: Very worried - would like advice

Postby KElizabeth » Wed Nov 22, 2017 12:18 am

Your husband needs a colonoscopy. Funny thing about colon cancer is that you can have bleeding from other things and cancer at the same time, and be misdiagnosed because of it. I had bleeding on and off for 6 years. I was told I just had hemroids and IBS. I was put off for two years when I could have been diagnosed.
Sigmoidoscopy is not appropriate. He needs the whole colon checked. The prep and time involved is the same, so why do it for an incomplete check?
The only way to know is a full scope so don't settle for less. If something is found then come back here and well help. Let us know either way.
Hang in there.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

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ocstacy
Posts: 264
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: Very worried - would like advice

Postby ocstacy » Wed Nov 22, 2017 1:39 am

Your husband needs a colonoscopy. Funny thing about colon cancer is that you can have bleeding from other things and cancer at the same time, and be misdiagnosed because of it. I had bleeding on and off for 6 years.


Agree, he needs a colonoscopy and I had to fight for it on a 2nd opinion due to my age at the time age 38. I had hemmy's to and since my mom had rectal cancer, I wanted to make sure cause I had an awful episode a couple of years ago where I had bad hemmy's and the pain was uncontrollable. I was afraid I had something more than hemmy's but thankfully my scan came out benign.

I wish your husband the best of luck and just remember that early diagnosis is always better than later!! :D
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

Worriedwife3
Posts: 2
Joined: Tue Nov 21, 2017 1:45 pm

Re: Very worried - would like advice

Postby Worriedwife3 » Thu Nov 30, 2017 1:34 am

Thank you. We are in the uk, so the
NHS always opt for the cheapest treatment!probably not having the full colonoscopy because they will do one if nothing is found after the sigmoidoscopy. Thanks for taking time to reply. I’m still really worried, but trying my best not to think about it too much.

WarriorSpouse
Posts: 220
Joined: Tue Aug 16, 2016 9:02 pm

Re: Very worried - would like advice

Postby WarriorSpouse » Thu Nov 30, 2017 1:08 pm

I am sorry to read of this delay caused by the UK's NHS... It is a legitimate concern that you have and one that can be resolved very quickly with a colonoscopy.

If the UK health system will not spend money on such an easy, inexpensive, and necessary medical procedure please go to the U.S. or Canada and pay for it out of pocket. It is the best defense against colon cancer. To sit and wait for the UK government system to give you permission to be proactive in your husband's healthcare is absolutely crazy.

Americans who cry for a socialized medical system like the UK's NHS, please take note of this post. One of the most successful advances in colon cancer treatments, Avastin, is not even covered (paid for) by the NHS in the UK. I can not understand how or why this is allowed to happen there.
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

stu
Posts: 1612
Joined: Sat Aug 17, 2013 5:46 pm

Re: Very worried - would like advice

Postby stu » Thu Nov 30, 2017 1:52 pm

Hi ,
I am in the UK too . I agree that a colonoscopy is needed to see the cause of the bleeding .
If you look online for the NICE guidelines for colonoscopy referrals you will see what you need to be saying to access the right investigation . If you quote the NICE guidelines you will be listened to or put it in writing to his GP . Remember there are guidelines here so you need to know them and then the system should move for you . If that does not work contact PALs .
They are a Patient Advocacy department .
Or speak to Macmillan 0808 808 0000 and they will talk you through his options . Try not to worry as there are ways to get heard .
They will help him .
Take care,
Stu
Last edited by stu on Thu Nov 30, 2017 1:59 pm, edited 1 time in total.
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

stu
Posts: 1612
Joined: Sat Aug 17, 2013 5:46 pm

Re: Very worried - would like advice

Postby stu » Thu Nov 30, 2017 1:58 pm

Hi Warriorspouse ,
The NHS has limitations for sure but it’s strength is it’s there for all people to access irrespective of your income . It has kept my stage 4 mum alive for eight years and she has had one bowel resection , two liver resections and one lung resection , two years of chemo and more scans than I can count for free . She has been treated really well and I am grateful . It is a state system so it has its limitations but I just thought you might like to hear my mum’s experience too .
Take care everyone ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .


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