Yesterday i spent two hours taking part in a conference between a legal team and two experts in oral cancer.One a dentist the other an Emeritus Professor in head and neck cancer with 26years experience.Over the last twelve months they have discussed and debated Robins case and yesterday saw the final conclusions of said experts.

The dentists conclusions were succcint,abrupt and to the point."Robins dentist was negligent and failed on any level to follow even the most basic guidlines laid down by the governing body".No news there then.

The report from the medical expert threw some real curve balls into the way Robins case was diagnosed and treated and ultimately the way he died.All ancient history i know ,but maybe a cautionary tale for those undergoing treatment and wondering if they should possibly be getting a second opinion.

Following Robins surgery in January,she states that the pathology report on the tumours and lymph nodes showed irrevocably that he had no chance of survival.

There was never,at any point during investigation,treatment or post treatment that our doctors ever indicated that he couldn't survive his cancer.Their diagnosos post initial biopsy was that he had a 90% chance of a ten year survival.Post surgery they decided only radiotherapy was needed and six weeks post treatment he was doing fine.

The proffessor states that tracking back,on the size of the secondary tumour when it was removed,it had been growing for approximately six months,and that it had already done its worst by the time it was removed.

Food for thought.Why didn't our doctors know all this,and if they did why didn't they tell us from the outset, and at the very least why wasn't he given concurrent chemotherapy,which Prof Saunders says would be standard practise?
None of these facts will make any difference to Robin now,but i do know if the information had been made available to him at the time ,he would undoubtedly have opted not to have treatment,a decision he surely had the right to make.

Proffessor Saunders,in answer to a question put to her by the attorney also stated that if Rob had been diagnosed after his first visit to the dentist,the only difference in his outcome would have been the manner and time of his death,which frankly shocked me rigid.In her opinion he could have survived for a few more months but would have died from the lung metasteses which she feels would still have developed.

So my question is "How do you know that your doctor is telling you the truth"We had great faith in robins surgeon and oncologist,and blindly accepted evrything they told us.We had no reason not to because like most patients we didn't know any better.In the UK we don't have the option of reading pathology reports or seeing scan reports,or even getting another opinion(not that we thought we needed one).

When his diagnosis became terminal we didn't really need a doctor to tell us he wouldn't make it,as by then it was glaringly obvious,but why did it come as such a shock to the doctors in light of the information they had in their hands.


Thoughts long since accepted and put to bed rattle around my buzzing brain,and once again the only thing of any use to come out of this is to serve as caution to always get the best advice and expertise you possibly can to fight this disease,and as always to Brian a heartfelt thankyou for expanding the information base here on OCF and continually educating us all.

Liz,

As always, thank you for sharing your personal story. I can't imagine how hard it must be to hear years later that you didn't have all of the facts when Robin was fighting this disease. Is it possible that maybe some of the comments made were made because of knowledge they have now that was not available before? Just a thought....

So, in the UK you can't get a second opinion or copies of any reports, scans etc? That sounds horrible to me....

Even though Robin passed away a couple of years ago I wouldn't consider it ancient history. I hope this new information you have doesn't ruin the healing you have already so strongly endured.

xoxo

Wow, Liz!

You have been through so much! Your experiences with Robin's care and the legal aftermath have become invaluable information that you have kindly shared with your OCF Family. Thank you.

I hope that you will find the closure that you need. You are such a strong person. Your struggle has had a definite impact on my life.

Love and Peace,

Hi suzanne.
sorry i couldn't go into detail on facebook,but my family still get a bit antsy with me when this subject comes up.

yeh a few people have asked that question since yesterday but all i can say is she based her report on the records sent to her by the doctors that treated Rob,so they had the information but maybe just didn't interpret it the same way.

As for me,i thought i was really quite clinical about it all now,but it was a sharp shock to know we could have been badly mislead and i know that if Robin was listening in he would be mad as hell that he went through all that crap and died such a painful death when he could have had a choice.

In the Uk we can get a second opinion after going through a lot of red tape,but we don't get to see reports and lab results,so we might not even know we need a second opinion and we dont get to ring up our doctors and speak to them,most times you don't even get to see the specialist personally just one of his staff.


Anyway looking at things through a rear view mirror 4 years on is easy isn't it.

Just like to say how proud i am to know someone who has fought,beaten this disease and produced a new life to boot.Its brilliant that we both still have so many of our OCF family celebrating their years of survival xxxx

I am so glad that you have posted this on OCF as there is so much that you have written that is of help to those who are or about to go through treatment. It can only be painful for you every time more information comes out about Rob�s treatment and ultimate death. I am so sorry Liz and don�t know what else to write but this must have been a real slap in the face for you (again). I will just add that I do have all my pathology tests because it is a right to have access to your own records here. It initially took a little effort and the help of the head CCC nurse but I have all the results from the initial operation and subsequent biopsies. I was missing the initial report that started my journey but I am again seeing this oral surgeon and it was no problem to get that one added to my collection.
Lots of love and a big hug {{{ }}}}
Gabe

Your activity may be helping your grieving process Liz - I hope so. People react differently under stress and in crisis - it doesn't mean that your reaction is any less valid than anyone elses. If fighting the doctors gives you purpose/satisfaction/justice/validation then I applaud you. But we do worry that it will be painful and we don't want you to hurt for any longer than you have to.

I am one to talk of course. I have fought with the doctors from day dot and was also told the records and reports were the property of the hospital. I cited the freedom of information act(I got that idea from the back of the cereal box) and lo and behold I was allowed to read Alex's file with a) written permission from Alex, b)on hospital grounds, c)in the presence of a health care professional (our cancer co-ordinator). Of course, I couldn't make head nor tail of most of it, but it gave me satisfaction.

I have learned that most people want to avoid confrontation and if you stand there with your hands on your hips looking like you know what you are talking about people will do what you ask. This is all after trying the "poor me, what am I to do?", Scarlett O'Hara act

Hi all
thanks for your concern but i would just like to put your minds at rest.I am not actively persuing anything anymore.This is still a continuation of the same investigation that has been going on for nearly three years now.Time is of no consequence to the legal profession it would seem lol.This is the first occasion i have actually been involved in any of the conferences,all i get is letters and reports every few months,most of the time i forget it is going on.

I will grieve for robin and the manner in which he died for the rest of my life,but it is no longer my life.Since he died i have been blessed with a new grandchild every year.They are my life,and will continue to be so.xxxx

Sorry to hear about your husband and the pain you must still feel, I find myself asking many what ifs as I watch my father lie dying from not the cancer directly but all the treatments he has had to try and cure it unsuccessfully.. He was initially given a good prognosis but when it re-occured a terminal prognosis and choices to help ease his horrible pain and I guess I will alwasy question did he choose wrong and could he be in a "better" state if he had made different choices... but am told this will just make me crazy. I do know I am much more informed NOW and would do a lot of things differently if I had to help someone else make choices with this horrible disease... but recognize the outcome may be the same - hope you find all the answers you need

Liz, thank you for sharing with us. You have gone above and beyond to see to it that no one else would have to go thru what Robin did. Im sure even with trying to be clinical about everything, it still was very difficult for you to relive the events. Im so sorry you have had to endure so much with Robin's passing. I cant imagine how frustrated you were with the responses given. You are one heck of an advocate! I could only hope to have someone with half of your spunk in my corner when the chips are down.


PS... Sorry if I brought up anything that was uncomfortable for you on FB. We are always here for you on OCF. ((((HUGS)))

Christine sweetheart of course you didn't i was just mindful that my post would show on all my family and friends wall and even after all this time for robs sister and family and also my own children i tend to keep my activity regarding OCF very much my own private matter.I wanted to share with my other "family " and this is the right place to do it. love you xxxx