Hi - looking for advice re possible bowel cancer

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ItsJoJo87
Posts: 1
Joined: Thu May 17, 2018 3:22 am

Hi - looking for advice re possible bowel cancer

Postby ItsJoJo87 » Thu May 17, 2018 4:18 am

Hi,

Apologies if you get these type of posts regularly. I'll state from the outset - I haven't yet had a diagnosis. I am in the process of waiting for a number of tests querying bowel cancer. But I have seen many members of my family, including my immediate family, go through the cancer treatment process so can I also say I have the utmost respect for every single one of you - you are warriors!

I have a history of a low - level malignant (and rare) lung tumor which was removed as a child, so my doc does keep an eye on things. And as stated, my extensive family history of cancer also means I'm kept a close eye on (breast, stomach, pancreatic, throat and neck, prostate, ovarian and cervical cancer).

I have always suffered from IBS (chronic constipation) but i began to notice a dramatic change in symptoms with the onset of another disease I developed. In January I developed chronic hives and dermatographism and kept stating to my doc they were making me feel ill. I was running to to the loo at least once a day (I've never experienced this - usually my bowels don't move for weeks on end and only with strong laxatives), I was having acid reflux and heartburn (which I've never suffered from), severe bloating to the point I look 6 months pregnant, fatigue, periods of tachycardia and shortness of breath. He ran some tests and my thyroid was overactive (I have a thyroid nodule which explains that), a high white cell count and low ferritin levels. He repeated them a week later and whilst my thyroid levels came back within range, the WBC was still elevated and my ferritin was 7.6 (heamoglobin and iron stores ok - so iron deficient without anemia).

He referred me to gastro and requested an ultrasound. He believed he felt a mass on my lower left abdomen. The ultrasound was refused by the X ray department but the gastroenterologist has ordered a colonoscopy and endoscopy. But being in the U.K. I've already been waiting 4 weeks for these tests and goodness knows when I'll get an appt.

I'm still really struggling with the shortness of breath - to the point at times I feel like I'm going to pass out with not being able to get a breath. I've borrowed an inhaler from my dad which helps. I'm not sure if this is linked to my bowel issues or to my chronic hives. I feel like my stomach is expanding on an almost daily basis. I'm still running to the toilet on a daily basis and whilst I haven't seen blood, there's a strong metallic smell from my stools. Like iron. I don't get periods due to the contraceptive pill so no reason why my iron levels are so low. I have no cramping or pain so it's not typical with the pain felt from IBS. I also have periods of tachycardia at rest (BPM up to 120 for no reason whatsoever) and regular nausea.

I guess I just want to ask what everyone's experience of the process of testing and symptoms has been. Is there anything else I should be pushing with my GP? I feel like I don't want to hassle them too much but the waiting lists for specialist care in the UK are dreadful.

Thanks son much for reading. X

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Hi - looking for advice re possible bowel cancer

Postby NHMike » Thu May 17, 2018 6:26 pm

I went into the hospital emergency room at 2 AM and left at around 6 PM after getting examined, getting a CT Scan and a Colonoscopy and got the official diagnoses within a week (from pathology). The guy that does colonoscopies just happened to be there that day (he does a circuit around my state) and he had an opening. If it's rectal cancer, then they will take a biopsy while doing the colonoscopy and send it out to have it examined. If it's colon cancer, then they might be able to remove it if it's a small (not 100% sure of this); otherwise they schedule surgery to remove it. Colorectal cancer is supposed to be slow-growing so a few weeks shouldn't matter but I understand that you want to get it out of there right now if you have it.

The colonoscopy and pathology report should tell you whether or not you have it. Hopefully you don't.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Hi - looking for advice re possible bowel cancer

Postby DarknessEmbraced » Thu May 24, 2018 9:04 am

I'm sorry you're going through so much and have to wait for a long time for your endoscopy and colonoscopy!*hugs* Is it possible to get on a cancellation list to get in sooner or is the wait list the cancellation list?
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Hi - looking for advice re possible bowel cancer

Postby Lee » Thu May 24, 2018 11:09 am

ItsJoJo87 wrote:Hi,

I'm still really struggling with the shortness of breath - to the point at times I feel like I'm going to pass out with not being able to get a breath. I've borrowed an inhaler from my dad which helps. I'm not sure if this is linked to my bowel issues or to my chronic hives. I feel like my stomach is expanding on an almost daily basis. I'm still running to the toilet on a daily basis and whilst I haven't seen blood, there's a strong metallic smell from my stools. Like iron. I don't get periods due to the contraceptive pill so no reason why my iron levels are so low. I have no cramping or pain so it's not typical with the pain felt from IBS. I also have periods of tachycardia at rest (BPM up to 120 for no reason whatsoever) and regular nausea.

X


Your struggling for air sounds more like a hive issue than colon cancer. I've had hives in the past, NO FUN!! Once I kept swallowing through out the night until I saw my PCP the next day. My PCP told me my throat was in the process of starting to close up, thus the constant swallowing.

Have you ever been diagnosed with asthma?

Are you getting some type of medical treatment for your hive? If you are struggling for air, you many need medical attention ASAP!! Don't wait until you can not breath.

Keep us posted and good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Daniellabella
Posts: 41
Joined: Wed May 23, 2018 10:32 pm

Re: Hi - looking for advice re possible bowel cancer

Postby Daniellabella » Thu May 24, 2018 4:37 pm

I wish you the best but can’t offer any advice.

My husband was diagnosed yesterday with rectosigmoid cancer.

I’m looking at the images from the sigmoidoscopy report.....is rectal cancer white? Or dark brown? Of another color?

I don’t know what I’m looking at!

SteveNZ
Posts: 147
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: Hi - looking for advice re possible bowel cancer

Postby SteveNZ » Fri May 25, 2018 12:22 am

Daniellabella wrote:I wish you the best but can’t offer any advice.

My husband was diagnosed yesterday with rectosigmoid cancer.

I’m looking at the images from the sigmoidoscopy report.....is rectal cancer white? Or dark brown? Of another color?

I don’t know what I’m looking at!

Hi,
My surgeon (who completed the colonoscopy) showed me the cancer there and then. I was awake enough to see tissue that was quite different from the rest (mine not unlike a light brown yellow 4cm long) and as you shared with your Dr he could not confirm it was cancer but was 99% certain having seen these so often.
Please do not try to make any conclusion from the image though, as we are not specialists. Every different 'coloured bit' meant something different and the cancer was only one particular bit. And it is what you cannot see that is now more important. And with myself there wasn't anything else to worry about....
All the best
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
August 27th-November 2018 - Surgery and long, long recovery
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.


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