# Incidental Diagnosis - Oh and by the way, we found you have....



## Eric Malcolm (Dec 18, 2011)

I am sure there are some of you out there that have had this experience.
Went to the doctor to address one issue and came away with a mind numbing shock.

This was mine: 

Earlier in the year I went to the doctor with pain in my lower abdomen that felt similar to that of my appendix when it inflamed. I knew I had a problem due to that pain level. Doctor informed me that I had Diverticulitis. Gave me a course of Augmentin and the pain subsided after 2 1/2 days and I felt normal for 2 days. The underlying pain returned as a background pain, always feeling like it would re-inflame at a moments notice. Back to the Doctor who sent me to a Specialist. Booked in for a colonoscopy, which was quickly done. I got a phone call the next day to urgently have a CT scan. This was duly done, then a visit to the Specialist. He said while Diverticulitis was a nuisance, I needed to look at the pictures of a circular feature on the wall of my Bowel. He informed me that was a cancer growing outside of the Bowel and it required immediate removal. Oh, and by the way, I will send you on to another Specialist as you have a tumour exposed by the CT scan done to confirm the Bowel cancer that is on your left kidney. He booked me in for his operation and this duly took place using a T.E.M method, so I have no body scar. The tumour was the size of an orange. The doc said I was a difficult case and they spent a lot of time getting that size of tumour out of a 40mm rectal space. I have a lot of laughs about that.
After a healing period of 5 months, in for the kidney. This was done by Lapriscope and is healing up fine. 4 little nicks on my abdomen and I am cancer free.

The pathology for both were pre Stage 4. The Bowel was about 4-5 weeks away from changing though so a close call.
I am baffled by the Diverticulitis as I don't have a poor diet. On checking, I was already on the right foods, and I had no indicators for the Bowel as I did not show blood as it usually would due to it not being within the bowel.

I have not had any Diverticulitis since and I do not need to have chemotherapthy or radiology.
There is no family disposition to this disease, though my sister died of a brain tumour while I was starting out on this experience, so when informed of my condition, was understandably concerned.

I hope not to have this experience again, but I am now on a watch list for the next 5 years. I turned 60 during this period, so I hope to have a bright future, and am thankful for those 'incidental' findings.

Eric


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## Mr Pig (Jun 25, 2008)

You were very blessed to have doctors who were on the ball. In the UK it is very common for doctors to make assumptions, play down symptoms and delay proper investigation until it is too late. It's tragic and makes me very angry. 

I'm glad your story is more positive and thank you for sharing :0)


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## TwiceHorn (Jun 18, 2014)

Agreed, OP is lucky/blessed.

Why do you think that is, Mr. Pig? Cost pressure in NHS? Poor medical training?


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## Velobike (Jun 23, 2007)

TwiceHorn said:


> Agreed, OP is lucky/blessed.
> 
> Why do you think that is, Mr. Pig? Cost pressure in NHS? Poor medical training?


Govt underfunding it so it crashes and then they can sell it off.

An incredible amount of the govt Members of Parliament have large investments in private health funds, and would benefit from this.

My experiences of it has been that the NHS is brilliant. (I have really needed it twice)


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## TwiceHorn (Jun 18, 2014)

Velobike said:


> Govt underfunding it so it crashes and then they can sell it off.
> 
> An incredible amount of the govt Members of Parliament have large investments in private health funds, and would benefit from this.
> 
> My experiences of it has been that the NHS is brilliant. (I have really needed it twice)


So, cost pressure (deliberate or otherwise) within NHS is driving poor medical decisions?

I'm fairly ignorant of the private/public divide in UK healthcare. Are private services widely used, presumably by the "former aristocracy" and other well off? And the notion is that they will be poised to takeover when NHS fails?


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## MSU Alum (Aug 8, 2009)

Mr Pig said:


> You were very blessed to have doctors who were on the ball. In the UK it is very common for doctors to make assumptions, play down symptoms and delay proper investigation until it is too late. It's tragic and makes me very angry.
> 
> I'm glad your story is more positive and thank you for sharing :0)


I rode the shuttle up to Burro with 7 Canucks who spent most of the ride complaining about their national health care (or lack thereof) this last September.

They were fellow old guys and I was talking about going to the hospital to get a calcium scan just because I was curious. I paid $150 out of pocket - I didn't even notify insurance - and I got an appointment 5 days after I called (Utah). THAT really set them off! I wasn't trying to be provocative, I just overheard them talking about heart health in general and mentioned that a calcium scan is pretty informative. Apparently, you wait years for a CAT scan in Canada, and that's only if you really need one.

About 5 years ago, my ophthalmologist found a malignant Choroidal melanoma in my right eye. Less than a week later, I saw a specialist to confirm via sonography and a week after that, I was in a Retinal specialist center getting treatment.


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## Eric Malcolm (Dec 18, 2011)

Mr Pig said:


> You were very blessed to have doctors who were on the ball. In the UK it is very common for doctors to make assumptions, play down symptoms and delay proper investigation until it is too late. It's tragic and makes me very angry.
> 
> I'm glad your story is more positive and thank you for sharing :0)


Thanks Mr Pig.

Here in New Zealand the health system would appear to be much the same. I have Medical Insurance so was able to side-step the Public system and this gave me my saving grace. If I waited for the Public system to catch up, I would be in all kinds of trouble as I was informed by my Surgeon/Specialist (who works in both systems) that I would be probably operated on after Christmas. I was sorted out end of May, so keeping in mind that 4-5 weeks to change into the deadly form of Stage 4 for my bowel cancer would have put me in the too late basket with potential finite results.

I am very aware of the close call that I have had.

I encourage anyone who has an odd feeling in their body to check it out.

Family history is not an indicator for cancer. Instead, I have found cancer to be a silent, insidious killer. The more I talk with people about cancer in general, the more I learn. It amazes me how wide an exposure people have to this disease and how diverse the end result. I take a sympathetic position as while I am fortunate, others have lost loved ones, and hope is a very powerful force if it fits the situation correctly. Unfortunately, many do not get found early enough and are lost. I hate Cancer.

The price financially in my 2 events came in at $NZ40,000. I appreciate Medical Insurance.

Eric


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## Cuyuna (May 14, 2017)

Eric Malcolm said:


> I am sure there are some of you out there that have had this experience.
> Went to the doctor to address one issue and came away with a mind numbing shock.
> 
> This was mine:
> ...


That was a very fortunate bout of diverticulitis! When was your last colonoscopy? Your doctor should have recommended your first one about 10 years ago and should have been on you about it at every visit thereafter. I'd be a little concerned about a doctor that would see a 60 year-old with left lower quadrant pain in the office, especially if no recent colon cancer screening, and decide to treat empirically with antibiotics without any diagnostic testing. That's the kind of thing that leads to a delay in diagnosis that could have changed the entire course of your disease. This is one of the reasons that people criticize single-payer health care systems like Canada or Britain...the basis of financial feasibility is rationing of care. That can lead to delays in diagnosis and treatment. In many, even most cases, that delay is inconvenient not life-threatening. The OP is an example of that. If he had been shrugged off, diagnosis not made early, he likely would still have been cured of his rectal cancer but it would have taken a much bigger operation to do it. But when we look at statistics on survival from this kind of thing, they'd be the same. So when comparing US to Canadian or British health care systems, people will say "see, survival is the same...British/Canadian health care just as good as the US, but a lot cheaper". Yes, true, but those patients can take a very, very different path to that end result.

Current screening recommendations for colon cancer are first evaluation (stool testing or colonoscopy) beginning at age 50 (American Cancer Society has begun recommending screening at age 45). The OP is a great illustration of why.

TEM (Transanal endoscopic microsurgery) is a great technique for dealing with small, early stage rectal cancers, and has huge advantages for recovery, so the attack of diverticulitis was all the more fortunate in allowing the tumor's early discovery. TEM is not widely available, even in the USA, so it was even _more_ fortunate that there was a surgeon available to you that could do it.

Both diverticulosis/diverticulitis and colorectal cancers do have a tendency to run in families, but the absence of family history does not assure that neither disease will occur. Diverticulosis with its increased likelihood of diverticulitis is very, very common (typical low-residue diet found in most affluent western societies) and certainly doesn't require a family history.

Great story and great outcome. Congratulations on your presumed victory and best wishes for the future.


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## Mr Pig (Jun 25, 2008)

TwiceHorn said:


> Why do you think that is, Mr. Pig? Cost pressure in NHS? Poor medical training?


I don't know, all three and a bunch of other issues probably.

I think the best way to understand the ills of the NHS is to think of it in terms of socialism, because it's basically a socialist system and has problems for the same reasons. The motive and principal is good but it flounders because to work, socialism has to assume that the participants are fundamentally good people who will cooperate and serve the ideal. In reality people are not good, but selfish, uncaring and only really interested in their own wellbeing and immediate sphere of operation.

So, while the NHS is constantly begging for more money, there is quite astonishing waste and inefficiency across the board. Virtually inevitable in an organisation so large and complex.

To go back to the original poster's situation, yes, doctors are hamstrung by financial considerations and the knowledge that advanced diagnosis procedures are often a long wait away. Often they are lazy or proud too and younger doctors are often overworked and lack experience.

It's no surprise that private healthcare is a thriving option in the UK and used by those wealthy enough to jump the queue. Who can blame them.


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## formica (Jul 4, 2004)

Yes, on the ball. I *wish* we had that experience with my hub's GI issues. Two summers ago he ended up in the ER with extreme gastric pain. He spent three days in the hospital with a supposed illues ( gut shuts down) and no real explanation, just "happens sometime". He got better, and then last year this time ended up in the ER again for the same thing. Pain so extreme he's doubled over and he's a tough guy. Gave him some antibiotics and said it was IBS. He then had two abdominal CAT scans that were clean, and a clear colonoscopy. Meanwhile, almost everything he ate was giving him extreme pain.He couldn't work. We tried a couple of fringe diets as he was getting desperate. He was still getting the whole "IBS" thing from the doc, even tho he was getting worse ---- lost almost 30 lbs in 3 months.

We finally went out of network to a metabolic specialist. The first thing she did was test for pathogens. It was noted in hub's chart that we went to Asia in 2015 but the PA couldn't put two and two together, evidently. Turns out he had both worms and parasites endemic to SE Asia. Testing for DNA fragments could identify the exact species. Treatment took three month. One of the prescriptions, which sells for $.50 a dose anywhere else in the world, cost $1400 in the US for a two week course. Thank goodness the out of network specialist was able to get it from Canada (via India) for use. Ten days into that med he woke up one day and said, OMG I feel SO much better. However, it took 6 months to recover. He was on such a restricted diet during the treatment that we had to cancel a big fancy dive trip - thank goodness for trip insurance.

This whole thing has really pissed us off - I guess we could have suggested parasites to our doc, but really, it's a standard question in more major metro areas than ours as far as we can tell.

He's on the mend, finally but what a hassle and oh so much out of pocket money for us. Yes, we have insurance but once you go out of network you are pretty much screwd.


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## Cuyuna (May 14, 2017)

Mr Pig said:


> It's no surprise that private healthcare is a thriving option in the UK and used by those wealthy enough to jump the queue. Who can blame them.


Private health care in the UK is thriving because people don't want to wait for their medical diagnoses and treatments. They're willing to pay more for the option of getting faster and more personal service. In the US, health care is more expensive but that's what you get for that extra money. Typically, Americans don't like the idea of having to queue up for anything. The US health care system is built around the simple fact that Americans expect to be able to get their CT scan today or tomorrow, and right there in their little home town hospital. Americans want the best, and they want it _now_. In the "Iron Triangle" of health care, you can have any two of the three. In this country, cost is at the bottom of the list.


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## Mr Pig (Jun 25, 2008)

Cuyuna said:


> Private health care in the UK is thriving because people don't want to wait for their medical diagnoses and treatments. They're willing to pay more for the option of getting faster and more personal service.


Ironically, a lot of the UK's private medical procedures are provided by NHS services, which are purchased by the private sector...


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## formica (Jul 4, 2004)

Well maybe but here is the US you can still wait months to get into a specialist.


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## Cuyuna (May 14, 2017)

formica said:


> Well maybe but here is the US you can still wait months to get into a specialist.


Yes. There is a doctor shortage. Demand for specialists exceeds supply. Not enough money in the system to entice the specialty doctors that the public demands.


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## Eric Malcolm (Dec 18, 2011)

Hi Cuyuna

Just to clarify, one of my riding partners is my GP Doctor. I had a recent check-up about 4 months prior to the out from left field Diverticulitis event with no alarms from a perfect blood test and as my my doctor describes me - a disgustingly healthy individual, so this was a shock event for all of us.

In NZ, there is a poo test that has begun this year available to 60yr olds and over. This should start at 50yrs IMO. Would not have been much use in my case due to the exterior location of the tumour. When my forms arrived after my operation to join the bowel screening program I wrote - Too Late!!!

Diverticulitis was treated symtomatically as there was no awareness not to. Can't leave a person in difficulty while there was no knowldge of other issues. The Augmentin was GP prescibed, not hospital investigated as I only went to my GP as my starting point. Appropriate responses followed. I was fortunate to be able to have the choice of private care, and this after employers provided a medical care scheme.

Eric


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## Cuyuna (May 14, 2017)

In the US, colon screening via stool-based testing or colonoscopy, is recommended starting at age 50 by virtually all of the various colon/rectal organizations with the exception of the American Cancer Society, which recommends starting such screening at age 45. Those recommendations aren't followed by many of the national health organizations of other countries because of cost. Earlier screening means more cost. They realize they'll miss some colon cancers, but it's a chance they're willing to let you take.

I'm not sure what you mean by the lesion being on outside of your colon. Colon rectal cancers always start on the inside lining of the colon, never on the outside. If the lesion was seen on a photograph, and if it was amenable to TEM, then it was on the inside lining and would be amenable to stool testing or colonoscopy for diagnosis if it had been done 4 months ago.

In the US, a CT scan for suspected diverticulitis would be the standard of care before initiating treatment. If you're from New Zealand then I understand why your doctor didn't do one....they're expensive.


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## Eric Malcolm (Dec 18, 2011)

Regarding the lesion on the outside rather than on the inside of the bowel wall, this is not common. My surgical notes describe 'a large 90 x 85mm broad based rectal tumour at 3 o'clock in lithotomy position, 60mm above the anal verge.' On the colonoscopy pictures, a hard flat disc shape lies in shadow, fully part of the bowel wall. This disc shape is about 25mm in diameter. When I studied this particular type of tumour, it was noted as uncommon. I note that I have more Bladder capacity now.

Eric


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## Mr Pig (Jun 25, 2008)

Cuyuna said:


> In the US, colon screening via stool-based testing or colonoscopy, is recommended starting at age 50..


In the UK this starts at fifty. Nice little birthday present through your door..


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## Eric Malcolm (Dec 18, 2011)

Before Christmas 2018, a friend of mine went into hospital to have his Kidney Stones dealt with by the Sonic method - my term. Duly done, he went home and pee'd out the little fractured crystals. Shortly afterwards, he was back in hospital with an infection of the Bladder that was so bad he ended up in critical care. After various tests and examinations a CT scan showed a small lump around the bowel/bladder area. So he went into surgery and had a tumor removed that was sourced growing from the bowel and attached to the bladder and causing the bladder problem and infections. Original problem was from a Flat Polyp growing inside the bowel but expanding though the Bowel wall into the pelvic cavity. If the complication had not happened, he would have gone full cancer as like myself, he had no symptoms to indicate he had a problem.

Eric


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## Mr Pig (Jun 25, 2008)

Good to see a nice outcome Eric.


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## Cuyuna (May 14, 2017)

Eric Malcolm said:


> Before Christmas 2018, a friend of mine went into hospital to have his Kidney Stones dealt with by the Sonic method - my term. Duly done, he went home and pee'd out the little fractured crystals. Shortly afterwards, he was back in hospital with an infection of the Bladder that was so bad he ended up in critical care. After various tests and examinations a CT scan showed a small lump around the bowel/bladder area. So he went into surgery and had a tumor removed that was sourced growing from the bowel and attached to the bladder and causing the bladder problem and infections. Original problem was from a Flat Polyp growing inside the bowel but expanding though the Bowel wall into the pelvic cavity. If the complication had not happened, he would have gone full cancer as like myself, he had no symptoms to indicate he had a problem.
> 
> Eric


 Glad your friend is OK. Sounds like he had diverticulitis too, with the infection causing a connection between the bowel and the bladder. The sequence you describe isn't likely.


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## rdsmith3 (Oct 5, 2014)

Wow, thank God you had some competent doctors and good diagnoses.


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## tfinator (Apr 30, 2009)

Cuyuna said:


> I'm not sure what you mean by the lesion being on outside of your colon. Colon rectal cancers always start on the inside lining of the colon, never on the outside. .


There is no always in medicine.

I had a bone marrow cancer in my inner ear. Trillions of people with just as many ailments mean there is no 'always'.

Sent from my Moto G (5) Plus using Tapatalk


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## Cuyuna (May 14, 2017)

tfinator said:


> There is no always in medicine.
> 
> I had a bone marrow cancer in my inner ear. Trillions of people with just as many ailments mean there is no 'always'.


Colorectal cancer _always_ starts on the inside lining of the colon.


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## tfinator (Apr 30, 2009)

Cuyuna said:


> Colorectal cancer _always_ starts on the inside lining of the colon.


I looked it up (I do not know anything about this) and find some case studies on carcinosarcoma of the colon. Seems like that's an exception where it might protrude into the colon from the outside. But, I do not have the background to really understand the case report. What do you think?

Sent from my Moto G (5) Plus using Tapatalk


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## BlueCheesehead (Jul 17, 2010)

I am glad to hear of the good outcomes.

On February 7th I received the news that a lump removed from my scalp was indeed a nodular melanoma. The hospital system had referred me to a plastic surgeon with a consult date of Feb. 25th. I reached out to some friends to find out who I should see. I got a recommendation to see a surgeon that specializes in head/neck cancers, coincidentally within the same hospital system. I got in to see him on Feb 12th for a consult. Driving home he called an said he had a cancellation and could get me in for surgery on February 14th. My melanoma was very thick. I was very blessed that the 3 tested lymph nodes and PET scan were all clear, so I am cancer free.

Cancer and a waiting line are not a good thing. I am very happy that the private system in the US got me in quickly and that I was able to choose my doctor. I am not sure that with a public system that I could have been my own best advocate with any affect.


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## joeduda (Jan 4, 2013)

tfinator said:


> There is no always in medicine.
> 
> I had a bone marrow cancer in my inner ear. Trillions of people with just as many ailments mean there is no 'always'.
> 
> Sent from my Moto G (5) Plus using Tapatalk


what type of cancer, multiple myloma? My Family doctor screwed around with me for a month, went every week for a month before i just went to the ER. It took them about 30 minutes to figure out i had leukemia. Had my 1st round of chemo the next day. Left the Hospital about a month later. My stem cell transplant doctor told me later that i was probably a day from being dead.


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## Cuyuna (May 14, 2017)

tfinator said:


> I looked it up (I do not know anything about this) and find some case studies on carcinosarcoma of the colon. Seems like that's an exception where it might protrude into the colon from the outside. But, I do not have the background to really understand the case report. What do you think?


Carcinosarcoma is not colorectal cancer. It's a completely different cancer, epithelial/mesenchymal rather than adenomatous, and has nothing whatsoever to do with "flat polyps" in the colon. It _might_ affect the colon, as well as several other organ systems, but it doesn't arise from the inside lining of the colon, therefore not colorectal cancer as it is defined.


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