Impression

Right pelvic sidewall mass that has increased in size and is causing obstruction of the right ureter. Urgent urological referral is needed. MRI of the pelvis for assessment of local extension is needed.
New large right liver lobe lesion that is suspicious for metastasis, further evaluation by MRI to rule out other lesion is recommended.
End of report

Do note here that the person writing this compared a CT scan with an MRI scan as since since May i have done no more MRI's. My consultant said that one of my lesions has increased in size yet not mention of it in these results. Hm?

I was so angry after reading this report, i'll explain more in a bit. I also got a letter in the post which shows that my NEW oncologist who has just taken over from the previous oncologist (who was fully aware of my histology) is requesting MRI's of the pelvis,liver, blood tests etc. Further down the letter I see the following: Clinical details: pre urology stent consideration, relapsing colon cancer with R obstructed kidney, R PSW mass, ? New liver mestases.

I had a cystoscopy and a stent put in my ureter to safeguard my kidney and relieve the blockage.

Getting back to my CT scan results now. You will notice a mention of a tumour which has increased in size. This petrified me. I begun going through all my paper from the hospital and I found in a discharge letter back in Sep 16 that I possibly have acute colitis and in the 2nd paragraph this:  Of concern is a solid enchancing nodular lesion in the right lesser pelvis measuring 22.3mm x 10.9mm which appears to be a lymph node enlargement. No perforation.

WHAT IS THIS? Nobody told me anything about this and I had to find out alone by investigative work going back to the day before my cancer diagnosis. From October 16 (after cancer diagnosis) and onwards I can recall 2-3 CT scans and all showed me clear of tumors. No one ever mentioned to me this tumor before. How come nobody saw a suspicious mass there and this was only seen in Sep 16, it then dissapeared for a year, and now my consultant based on my last scan (this mont) called it a recurrence??. My consultant obviously read what my oncologist wrote to him as he himself as we can see is calling it "relapsing colon cancer".

Well. clearly it is not a recurrence as this has been there a month before my colon cancer diagnosis going back 1 year and 1 month.

I have done extensive research and for a colon cancer to metastasize to the ureter is SO UNCOMMON (unless by direct extention meaning from the urethra/kidney etc. and then this is still rare)  that is unheard of. It is so extremely rare that it almost cannot happen. I doubt any of the doctors at the hospital have ever come accross this as there are very few reported cases worldwide.

As you can understand this mass has been over there for a year now, my consultant obviously doesn't know what he's talking about nor my oncologist and am here scared now that IF this is cancerous it won't be at an early stage. Further on my liver lesions had been ruled out and now the latest scan shows mestastasis????? What in the hell is going on?

My guess is that my new oncologist or radiologist isn't aware of my histology, saw the latest CT scan and called the liver lesions as metastastic without knowing these lesions have been ruled out in the past. I HOPE this is the case. Also what about this tumor pressing my ureter???
Having done further research I found that my blood levels: CEA (3), CRP(3.6) and white cells t is perfectly normal unlike the days before my cancer resection. For me to have a systemic disease at this point, meaning 2 malignant tumors inside me (liver and ureter) and for this to not be reflected in my blood seems sort of unlikely. I also have no symptoms and feel perfectly fine. This gives me some hope.I worry a lot that NHS has screwed me over.

If I happen to have cancer inside me (no official diagnosis yet) as a result of negligence I will sue the NHS and take down with me all the culprits. Tomorrow am going to the hospital to demand to speak to an oncologist/radiologist/chief executive of the hospital in order to clear things up.

I haven't been receiving proper care. There is a chance NHS has ruined my life due to incompetence.

I am only 32, without a job, no partner, money problems and various health problems in the family and now I have to face this incompetence.

At this point I will not name individuals.

First, good for you Archetype in fighting your corner. You have raised serious questions about your treatment and are entitled to answers. Like you, I am not a medic, but also had bad experiences following my diagnosis of penile cancer, and had to fight, before finally getting world class treatment. One difference with your situation, though, is that my diagnosis was made promptly and accurately. But I had to fight to avoid losing half my penis to a consultant who had I been rerouted to in error, had not read my case file, and thought my tumour was T3 instead of T1. Trying to persuade him and his colleagues of his error led a Kafka-esque situation until the penny finally dropped. Bloody hell! In your case, for example, I would like to know why a biopsy was not taken during your initial colitis episode. I'm sure they had their reasons, but you are entitled to know what these reasons were. Again, you had no biopsy on the liver lesions, and they probably had good reasons for this. A liver biopsy is a highly invasive procedure which entails several risks. Nevertheless, they should explain this to you. Good luck, Archetype! Harry2

Hi,

You really have been through the mill in so many ways. There's no easy way to give people really bad news, but there a lot of ways NOT to give it and this was defnitely one of them. 

Your case sounds incredibly complicated, it sounds like you need and deserve answers to so many questions.

I hope you get the answers you need, soon.

Best wishes and good luck.

Dave

Hello 

we went hospital exactly this time last year. Husband struggling to swallow and eat and loosing weight rapidly. Every time camera went down it struggled to go throu. Numerous biopsy’s and even CT scans and a PET scan failed to show a stage 4 inoperable stomach tumour. So they say it wasn’t there in January but now “it’s possible it’s been there over a year”??? 

Weve taken it the hospital complaints procedure that states a misdiagnosis was made and this cancer has been there all along. 

Proving them to be both negligent AND on causation is gonna be a battle I think. But a battle I’m willing to take 

one solicitor says they were negligent and should of done something with his atypical cells on biopsy’s but the outcome they’re saying would be the same...although I beg to differ as if seen 6 months ago when presented then he may have had the option of surgery and now it’s only palliative chemo. 43 years old and two young boys 

Very sorry to hear that @GeImini. Don't let them get away with it.   @Harry good to hear you are good now.
 

I am determined to do all I can to sue NHS if i end up with a "recurrences" that aren't really recurrences since both sites in my body had been with cancer from day 1 (assuming I do have cancer inside me, it's not certain yet).  I can clearly prove negligence.

I am potentially facing a complete disaster here if indeed huge errors have been made in my case. A potentially  curable case can get out of control if Imperial Liver MDT screwed up for my liver and also my hospital screwed up living a malignant tumor inside me for a year. 

My general blood results, CRP, bone profile  and liver profile are perfectly fine with the exception of  Alkaline phosphatase which is at 196 (normal range 30-130)

Hi Gemini,

I'm not a doctor or anything but I can repeat back some of the possible reasons I've been given for cancers which with hindsight must have been there for over a year not being detected until stage 4. Some of these can't be helped, but others are grounds for accusations of incompetence. I'm sure there are others, but these were the ones I was given. 

Ultrasound isn't always effective in detecting cancer (after my ultrasound I was told there is nothing unusual there, but I insisted on further tests because I knew how ineffective ultrasounds can be).

When the first scan was done the primary was too small to be detected by ultrasound or CT scan (when chemo shrunk my secondaries my oncologist said that they were probably still there but that CT isn't good for detecting anything smaller than about 3mm across). 

They did an ordinary CT scan, rather than CT with contrast (the contrast helps make the cancer more obvious to whoever is interpreting the scan and producing the report for the Oncology team. I had one CT scan without contrast as they couldn't access a vein as the chemo had hardened the vein walls but it was unusable as my primary cancer had "disappeared" - it "re-appeared" a week later when I had a scan with contrast).

Human error. Whoever interpreted the CT scan (usually a Radiologist) missed spotting the cancer and whoever was supposed to have double-checked didn't do their job properly (this happened when I worked for the NHS in Greater Manchester and after literally thousands of scans were re-examined twenty two patients had to be recalled as they did have breast cancer but had been told they didn't).

Best wishes
Dave

Hiya Dave 

i would of thought the PET scan 12 weeks before shocking diagnosis would of highlighted something?? Xx

And did u take it further?

I am having mri's this week and next week am seeing my oncologist with hopefully good news.