cancer missdiagnose

[raymy1954]

i was diagnosed with pancreatic cancer july 2005 given 3 months to live advised to trial phase2 m200 and chemo every mon for 1year 38 chemos later still working fulltime stopped ffwwd july2008 went to western ae dept massive bleed in tumor same symptons as 2005 4pts blood biopsyx2 then they said could operate it neuroendocryne cancer 6 weeks later tumor out bloods ok ctscan ok 3d nuclear scan ok no cancer cells in body maby someone got it wrong

[poppynurse]

I'm pleased to hear you are tumour free.

 

Could it be that the chemo worked originally and the surgery worked this time hence ridding you of the tumour?

[raymy1954]

the tumour had grown 5times original size since original diag scan every 2months paid by drug company confirmed the prof said if he hadnt op 2008 it would nt been able to operate sugg you google panc cancer

[poppynurse]

I am familiar with pancreatic cancer thank you.

 

If the cancer was confirmed by so many scans and is now not visible on scans/bloods, what do you think someone got wrong?

[raymy1954]

original told cancer had spread lymph nodes stomach etc could not operate ffwwd 2008 other doctors said its less aggresive neuroendocryne if it grows any bigger we couldnt operate also said 38 chemo and trial were not suitable for type of cancer nb 2 diff hospitals 2 diff opinions do you think someone got wrong

[dulwichwood]

Could you translate this into English please? Even for a neuroendocrine cancer surely chemo wouldn't have done any harm. If they've debrided and sorted the tumour out and you are now free of cancer, I really can't understand why you're complaining.

[ErikaPNP]

original told cancer had spread lymph nodes stomach etc could not operate ffwwd 2008 other doctors said its less aggresive neuroendocryne if it grows any bigger we couldnt operate also said 38 chemo and trial were not suitable for type of cancer nb 2 diff hospitals 2 diff opinions do you think someone got wrong

I've highlighted those bits for a reason. You were originally told. You had treatment. The cancer became less aggressive. I hate to point out the obvious and at the risk of sounding condescending, isn't that what treatment is meant to do? Reduce or eliminate? i.e make it less aggressive?

 

Also in your first post you said in 2008 there were no cancer cells in your body, but in the post I quoted above you said that in 2008 a doctor said it was less aggressive, which indicates that there was still some cancer there.

 

In addition, you say that a doctor in 2008 stated that your treatment were not suitable - I'm wondering if they were considered suitable at the time you received the treatment but no longer are - medical suitability changes frequently particularly where trials are concerned. You were given three months to live and are still here 3 years later.

 

I'm a little confused, could you be more clear in your posts please? We cannot help if you don't make it clear and write in abbreviations which are only legible to yourself. People will also be reluctant to help you if you are sarcastic to them as in:

sugg you google panc cancer

.

 

Poppy is a well respected member here and a highly trained nurse, her advice in these matters can be very valuable.

Edited January 5, 2009 by ErikaPNP
Woops, just realised how old this thread is! Ach well, I've typed it now!

[raymy1954]

i hate to sound condescending but cancer was never ever aggressive it was im led to believe a carcinoma of the neuroendocryne gland of pancreas i have no medical knowledge and i am a bit of a luddite regarding computers the 38 chemos and TRIAL DRUG had to be stopped after 1 yea r to quote docs damaging organs that would prove more debillating the chemo was also certainly not a breeze and have been told if any further problems i will not be treated with chemo

[poppynurse]

So what are you asking?

[raymy1954]

read last sentence first post

[GALLACHE]

Hi Raymy1954,

 

You have not fully explained everything in a way that other posters can follow easily or answered some of their questions.

 

If you truly want peoples opinions I would try give as much clear info as possible. Maybe you should seek the advise of a lawyer.

[cadencealex]

Yeah maybe someone got it wrong

 

Or maybe you were cured by the drugs!

[Goldlady]

It would make an interesting medical negligence claim:confused: Surely it is better that they treated you for what could have been, rather than take the risk of not treating you....

[ErikaPNP]

read last sentence first post

 

Here is your first post:

i was diagnosed with pancreatic cancer july 2005 given 3 months to live advised to trial phase2 m200 and chemo every mon for 1year 38 chemos later still working fulltime stopped ffwwd july2008 went to western ae dept massive bleed in tumor same symptons as 2005 4pts blood biopsyx2 then they said could operate it neuroendocryne cancer 6 weeks later tumor out bloods ok ctscan ok 3d nuclear scan ok no cancer cells in body maby someone got it wrong

 

 

There IS no last sentance in your initial post, it is one long sentance with no punctuation to ascertain exactly what you mean by "last sentance", please clarify.

 

If you mean the part where you state that maybe someone got it wrong, then please refer to the earlier postings people have placed in reply to you asking you to clarify matters/provide further information, and asked you direct questions.

 

 

We cannot give any advise unless you are completely clear on the subject. We do not know you and we do not know the entire background, we have therefore asked you to answer some questions which you have failed to do, and as a result we have been unable to offer any assistance.

 

This is a good forum which can offer much valued help and people on here give up their own time (no-one is paid here for providing advice or information) however in order to offer sound and proper advise we do require a full understanding of your situation. A little politeness on your part towards the people who have taken the time to read and reply would not go amiss either, rather than remarks and telling people to re-read something which they have already required clarification on.

 

i.e:

cancer was never ever aggressive

Earlier you stated:

original told cancer had spread lymph nodes stomach etc could not operate ffwwd 2008 other doctors said its less aggresive

No-one ever stated that the cancer was aggressive, words from your own posts were quoted, where you earlier stated that the cancer was less aggressive, that's all.

 

Have you spoken in-depth to your healthcare professionals regarding your concerns?

Edited February 13, 2009 by ErikaPNP

[Guest Old_andrew2018]

The chemo has certainly worked well for you, please do continue with your reviews, I wish you luck for the future.

 

Andy

[raymy1954]

thank you for all posts i would be gratefull for comments on medical notes as follows july 2005 endoscopic ultrasound of pancreas demonstrated a 5 cm mass in tail of panc with adjacent lymphadenopathy the splenic vein was occluded with multiple venous collaterals the mass is most likely a panc adenocarcinoma Mr...(EDITED NAME) may end up needing a staging laparoscopy possible proceeding to a distal pancreatomy and splenectomy it would be best to vaccinate him preoperatively other hospital appointment sept 2005 panc adenocarcinoma with confirmedmetastatic lympth node involvement and vascular encasement the tumour is inoperable if you could see him with a view to pallative chemo sept 2005 at oncology mr...(EDITED NAME) is devastated at news he has inoperable met panc we discussed marginal benefits of pallative chemo he has agreed to attend cru for phase 2 study mr and mrs...(EDITED NAME) are both clearly struggling with his devastating news july 2008 surgical unit as you know this gentleman was admitted to ae with bleed into neuroendocryne tumour of panc core biopsy confirmed nature of this we did radical resection tail spleen and diaphragm pathology confirmed a neuroendocryne tumour all quotes from notes is it normal practice to act on most likely a carcinoma many thanks please excuse grammer etc

Edited March 2, 2009 by 42man
deleted names

[mree]

PUNCTUATION! I'm sorry, but that's unreadable.

[flyingdoc]

You have left your name in the notes - you may want to remove that.

 

There is an axiom in medicine, what is most common is most common.

 

What this means is that yes they would treat for the most common condition that fits the presenting symptoms/results. The human body is a very complex machine and there are literally hundreds of conditions that can present the same symptoms. You cannot possibly treat or investigate for them all so what you do is treat for the most likely and see if that works. If not then you look to next most common.

 

Commonly treatments are impirical, meaning that there is no particular sound scientific rationale for using them, but they still work, and sometimes conditions are idiopathic which means that they happen for no discernable reason, but people still get sick.

 

We are not at the stage yet where we understand everything about the human body, how it works and how it goes wrong. We cannot simply plug someone into a computer and have a difinitive diagnosis of fault.

 

medicine has made leaps and bounds but we still have a long way to go.

 

My advice would be, be grateful that your prognosis is clearly much more favourable than first thought and enjoy the remainder of your life. There are many who would be pleased at the opportunity.