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Memorial Sloan-Kettering Cancer Center Nomogram - Calculating Recurrence Probabilities

todd121
Posts: 515
Joined: Dec 2012

At my my most recent visit to the oncologist, he used a prediction tool on Sloan-Kettering's website called a Renal Cell Carcinoma Nomogram. You enter your histology, symptoms, pathology and tumor size (this is for post-surgical, single tumor calculating recurrence probabilities) and it outputs a number. There are links on the page explaining how the data was built and to papers explaining what it means.

I played with the tool some.

I think this is the link that will take you there: http://nomograms.mskcc.org/Renal/PostSurgery.aspx

It came up with a much lower number than what I thought I had based on other data I looked at from other papers. I had expected my rate to be something like 30-40%, but when I enter my data on this site it comes up with something like 13%.

I'm somewhat new here. I'm always hoping I'm not bringing up stuff that has been talked about ad nauseum. ;) Still, I thought this tool was interesting. My uncle who is a retired oncologist doesn't trust this number and wants me to talk to someone more experienced so I have an appointment on Monday with such a person.

Todd

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Yes, Todd, most of us know all about the MSKCC item (and others of like kind) and the subject has been discussed ad nauseam, probably many times over as new crops of people turn up here and discover these things for the first time.  Because so many new threads are started all the time, information is rapidly lost to sight and the wheel has to be re-invented constantly. 

On this topic (calculators), if you go to this thread and do a word search on the thread with the word "calculator" you'll find some material that I hope you'll find useful:

http://csn.cancer.org/node/234406

The bottom line is that these "calculators" are a load of crap when it comes to individual cases and should be ignored, or played with just for amusement.  This is why those proffering them take care to put out warnings to prospective users and you can only get to input data after agreeing the terms and conditions of usage (as a lawyer, I think that is very sensible!) They have a useful function for research purposes when considering populations or groups. but not for application to individual cases.   Their utility, even for valid applications, is, however, seriously undermined by the fact that the data they employ is mostly totally out of date and doesn't reflect the realities now applying after rapid progress in RCC understanding and therapies in the last few years.

More generally, if you want answers a good start is to use the excellent search facilities that CSN makes available here (see top right corner of this screen) - you will often find a mine of information already here - often making it unnecessary for you to ask a question.

The constant starting of new threads now seems to be getting totally out of control.  You very sensibly just made this comment to iceman:

"Being new here, sometimes I'm not clear what's appropriate to post. Currently I'm just going with if I have something I want to share with everyone, then I log in here and write."

You shouldn't feel reluctant to post whatever you want here and your contributions are always interesting to read, BUT may I ask why you constantly create new threads?!  You joined us on 16th December and have made 32 posts at the time I'm writing this.  In the past 20 days you've created 8 new threads!  Could you maybe try to post on existing threads, either of your own creation or on other threads, as appropriate, and only start new a thread if a search reveals that the subject is a new one and therefore justifies a new thread?

There are good reasons for saying this.  Two main ones:- as new threads are created they push important threads down the list and out of sight while spreading potentially valuable information thinly across innumerable threads instead of us keeping it together for easier access.  The other is an even more practical one.   If you start a new thread whenever you have something to say it becomes very difficult to remember crucial information about you and consequently a lot more difficult to offer you help without trawling through one thread after another to dredge up info on your particular circumstances.  That is so laborious that it will probably mean you get less help than you could if you kept your personal story  more together on existing threads. This could be important for you at this early stage in your experience of RCC when you have many questions that I hope we can help you with.

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

Hi mister Texas yes you are correct we need to try to keep things in order by keeping those important threads up top,but we were all new at one time and we wanted to make valueable contributions.Texas not to get personal or be rude but would it be safe to assume you are a little bit of a neat freak.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Yes, Mike, that would be safe to say. Frown 

Actually I'm a failed obsessive-compulsive - you should see my study which is almost knee-deep in piles of books and academic papers on all sorts of subjects, together with under-used filing cabinets, box files, magazine holders, bookcases and waste-baskets.

However, that doesn't invalidate my points about the desirability of not creating unnecessary new threads all the time, now does it?

NewDay's picture
NewDay
Posts: 170
Joined: May 2012

Tex and Mike,

 I agree with you both.  It makes sense when you stop and think about it, but to be fair to newbies, this was the first board I had ever joined and had no idea how it worked and, at the time, was a little too distracted by the shock of the whole cancer thing to take time to think about how the process works.  I was doing good just to figure out how to post at all.  I've been in IT for 30 years so it is not as if I am technically challenged, but just had never used one of these.  I think my "newbie" status has expired but am stepping in in their defense.

Tex,

The first time I read a post where you mentioned the problem, I thought "DUH", of course.  However, I'm not sure if you realize it, but sometimes your wording comes across like you are yelling at or at least scolding the person.  I know people shouldn't be so sensitive but some are.  The tone might (and I mean might) be justified if you were constantly having to tell the same person over and over, but most of us have gotten the message (though we may forget occassionally).  If we were physically gathering at a meeting and a total stranger walked in and introduced himself, would you really start yelling at him for something when he didn't even know the "rules"?

 It seems to me that it would help if, when someone first registers, the screen would start with some instructions or suggestions about how to use the board.  You may come back and tell me it already does and turns out I didn't pay attention.  If that's the case it needs to be in bold red or something.  I know it is not fair to ask you to take on the task, but you could write a very POLITELY worded post titled "Welcome and Here's how to use the board" and save it in a document somewhere.  Then when you see someone start with "This is my first time here", you could always reply and copy/paste your standard (politely worded) "welcome".

You are a great guy and I enjoy reading your posts.  They are usually so polite and caring and eloquent.  I still think of you even when I'm not on the board (not all the time, not in a creepy way - don't want to start rumors), but can you cut the new newbies a little slack? :)

 Kathy

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

But hey give me a little credit to me  its not easy going up against hunks such as Gary-Fox-David-Texas-Todd and so on but i do my best and yes i feel at times the words Texas might use might be interpeted as him scolding someone  a little but his intentions are sincere.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Mike,

FWI, the iceman spells his name GaRRy, but I'm sure he doesn't mind being called a hunk either way.

The other Gary

KJones1969
Posts: 158
Joined: Mar 2012

I agree with your post Kathy! When my husband was first diagnosed with Stage IV RCC that had spread to his lungs last year I started on thread then started another one. I was "scolded" and usually do not feel intimidated by anyone but this time I was. I do agree about the "important" threads being at the top but to each of us our thread is important. It may not be as important to anyone else but to us at the time it is the most important thing out there. I started out typing right much on this site but not so much over the last few months because of how I felt when I first joined it. I enjoy reading what everyone types on here and get information out of all of the knowledge people have but do not like to feel like I shouldn't be here.

Godspeed and have a great day!

Karen

KJones1969
Posts: 158
Joined: Mar 2012

I agree with your post Kathy! When my husband was first diagnosed with Stage IV RCC that had spread to his lungs last year I started on thread then started another one. I was "scolded" and usually do not feel intimidated by anyone but this time I was. I do agree about the "important" threads being at the top but to each of us our thread is important. It may not be as important to anyone else but to us at the time it is the most important thing out there. I started out typing right much on this site but not so much over the last few months because of how I felt when I first joined it. I enjoy reading what everyone types on here and get information out of all of the knowledge people have but do not like to feel like I shouldn't be here.

Godspeed and have a great day!

Karen

todd121
Posts: 515
Joined: Dec 2012

I'm also a failed obsessive compulsive. Well, I still obsess, but have been working on not taking action all the time. I tend to swing between the extremes. It's a learning process.

This issue goes to the heart of what this board is about. Is it just about offering organized data/information? I think that's part of it, but only part of it. It's also about socializing and supporting one another (something I believe you and several others here are quite good at, by the way). This last part probably means there'll be people like me, new, that repeat stuff that's been said because I'm sharing my experience, which is new for me. While the data may have been put forth earlier, my spin/experience was unique to me and I was interested in feedback on the numbers.

Your response validated what's come out for me. These probabilities aren't very helpful for me because they don't tell me what's going to happen to ME. It's good to know they aren't very reliable, because I'm trying to make some decisions about adjuvant therapy, and so, based on your input, I'm not going to give much weight to these numbers. On Monday I'll see a more experienced oncologist and make a decision following his input.

I am curious about the search. Have you noticed problems with the search feature? Because I see very real problems with it when I've tried to use it. But you seem to find things easily, so I think I must be missing something about how it works.

Thanks!

Todd

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

You're probably not missing anything Todd. With your background you'll understand the difficulties in accommodating effective search algorithms.  It's maybe fanciful but I have the feeling that the search facility is more flakey now that we have (part of?) the 'upgrade'. 

I've been a bit of a professional searcher over the years, across a variety of academic disciplines, have acquired a few dodges and workarounds and use a good deal of lateral thinking.  However, I find much the same problems as you've mentioned already. I often devise ways round them but it is very frustrating. 

Your "Nomogram" example shows it's not a matter of case-sensitivity and I've verified that it's not a case of searching only the body of the text and not the subject line, or anything funny like that. I've repeatedly encountered the problems you've referred to. In fact I ran a search for "calculator" which threw up a number of threads. The very first one listed (but only that one) actually has no occurrence whatever of the word calculator anywhere within it!  [However, as regards the merits of the calculators, that thread throws up some graphic demonstrations of the inapplicability of generalisations to individuals.  It contains messages from a couple of our heroes. One is Donna Lee who was told she had 5-7 months to live, 7 years ago.  The other is a lady who has had two forms of cancer and repeated recurrences at 5 year intervals and is still enjoying life 12 years on.  I've admired and congratulated her for a long while but I'm afraid I'm in her bad books at the moment so I'll hurry on!]

The shortcomings of the search machinery are exacerbated by our lack of forethought and that's one reason why I've hoped for greater care by members in facilitating making past data more accessible.  Kathy has made a suggestion above that makes good sense.  She's unaware that I had made that suggestion to the CSN team (along with many other notions of  how this valuable site could be made even more valuable) and there is a proposal that is being mulled over.  I have held off pursuing that and my other ideas pro tem, given the manifest problems with the upgrade, which my Wife, as a software architect, expert in requirements capture , design and integration etc had regarded as predictable, given the over-ambitious way in which the upgrade has been implemented (or not!).

I post on a lot of other forums (in the cancer field and in other domains, including some favourite sports - golf and rowing in particular) so I'm always frustrated when it's like drawing blood from a stone to get answers that one senses could be found - if there were better structures in place.  On the Colorectal Cancer forum, I said:  "The ridiculous extreme can be seen on the Rare and Other Cancers forum where there are dozens of threads about pancreatic cancer, many with exactly the same title and each with only one or two postings on it.  That does nobody any favours."  If you do a search for "pancreatic cancer" there, you'll see what I mean.

There's no way newcomers would know how much effort some of us have made behind the scenes with the CSN team to try to improve matters.  When you have a few spare minutes, I'd appreciate it if you could take a look at the thread Alice Thompson started and where I made some detailed proposals, as to which I'd welcome your feedback.  The thread is entitled  "Collecting kidney cancer information from Kidney cancer patients"

todd121
Posts: 515
Joined: Dec 2012

In my defense, I can only say that I'd have to sit here and spend hours a day to read all the threads and posts for the past several months, and I'm having trouble even keeping up with what's been posted just since I started here 6 weeks again.

Second, threads started with one topic often seem to diverge into completely different and unrelated topics. From what I've seen, by the time a thread finishes it very often has nothing to do with what started it.

Finally, I've tried using the search feature, and have found it awkward and clumsy to use. In fact, I've tried searching for key words that I know exist in certain posts, and those posts don't even show up in my results, making me really not trust the search feature. Perhaps I don't know how to use the search feature, but it appeared to me it has some kind of serious problem. I'm a computer scientist, so I should know how to search for general expressions, and I think I do, but it appears the search feature only does exact word matches, and doesn't return results that are substrings or different case matches? I'll have to investigate the search feature again.

Finally, I'm not always able to match the subject of the thread with what it is I'm interested in finding out. I've noticed people's subject lines often don't relate to the topic they are discussing (I'm guilty too...)

Really finally, I'm new here, and I've missed a lot of history, and while I do love to come here and am interested in learning about this, I don't have the time or energy or maybe even interest in spending  too much time on here reading every day. I guess this last part could be summarized as I'm lazy or slothful. Ok. I'd agree I suppose. Well, maybe not. I just have different priorities. Today, for instance, I worked most of the day and then had an evening out with friends and had a really terrific day. I don't regret having spent the day that way instead of being on here reading back posts.

But in the end, I do appreciate the feedback and I'll make attempts to improve. There are other things I find about this tool to be annoying. That every subject of a response to an original post can have a different subject makes it difficult to follow a thread. Also, the indentation and replies are hard to line up when you pass more than a single page, so that often people reply to the wrong person (and I have trouble figuring out who I should reply to when my comment is a general comment and not necessarily aimed at a single person, but the audience on a thread).

There's probaly no way around the fact I'm new and what's news to me is probably going to be old news to you. :) But maybe something I post will be seen by somebody else that is new that also just has time, like me, to scan and read the first page of posts.

And some of the reason I'm here is I just want to be listened to, and I'm ok with that and I'm ok with just listening to others who want to be listened to. Your points, however, I will consider and try and be a better member of this valuable community.

Thanks!

Todd

todd121
Posts: 515
Joined: Dec 2012

I just searched the Kidney Cancer board for the string "nomogram" and this thread did not show up, even though "Nomogram" is in the subject title of the first post.

When a search tool is unreliable, it makes me not want to even bother with it. I had noticed the search had issues several weeks ago, and was discouraged from using it since from my perspective it is unreliable.

I may play with it some more to see what other issues it has, but I don't see a way to control wild card searches looking for mixed case matches like the one above, or substring matches. Maybe there's another way to search? I was using only the search box at the top of the Kidney Cancer forum.

Todd

foxhd's picture
foxhd
Posts: 1876
Joined: Oct 2011

Post whatever concerns you. If someone suggests that it is already been discussed and can lead you in the right direction, good for you. If comments and questions seem out of place, we'll deal with it. It happens on every internet forum. The newer the member, the greater the importance of their inquiries. It's the nature of the beast. For example, hasn't every newbie asked right up front, "What can I expect?" Nothing has been repeated more than that. Maybe we need a "stickie" section.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

That's one interim improvement that was under consideration.  Without me, however - I'm giving up banging my head against the wall here.

foxhd's picture
foxhd
Posts: 1876
Joined: Oct 2011

...and the concensus here was that dent in your noggin was from a 9 iron......

garym's picture
garym
Posts: 1651
Joined: Nov 2009


 

NewDay's picture
NewDay
Posts: 170
Joined: May 2012

Hi Tex,

 I finally got a chance to read through that thread with all of your suggestions and they are really good ideas.  I guess the problem is finding someone with the time to devote to the effort.  

 On that suggestion I made that you make it a routine to reply  when newbies first join and give them a standard welcome message with suggestions.  Do you like how I delegated that?  I actually would be glad to take on that task but am not so good at wording things and despite my prior comments, you are very talented at it.  If you would be willing to draft a nice welcome message with instructions and explain that following some suggestions helps make the forum a better place for all, I will save the text and, when a newbie first posts, I will copy/paste it.  The other option would be (and I can't believe I'm suggesting this to you of all people) for you to create a new thread that has all of this information and I will just take on the task of replying to their first post and including a link to that thread.  That way you can edit it yourself any time instead of having to filter updates through me.  I would suggest though that you be sure to put the most important information at the beginning in case they just get overwhelmed and dont finish reading it.

Just a suggestion,

Kathy

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Kathy, I'd more or less decided to stop posting on CSN, came here to check a bit of info and saw your message.  It's latish here now, I've been reading all day and have done a long rowing session so I'm off to bed (to read a crime novel!).  So I'll sleep on your post and reply tomorrow.

NewDay's picture
NewDay
Posts: 170
Joined: May 2012

Tex,

First let me say that I hope you aren't leaving because of what I said and that it is just general frustration with the board.

Second, please don't drop off completely.  I understand needing to take a break from beating your head against a wall, but you are such a valuable member here informing and encouraging people.  I just can't imagine you not being here. You have given me such encouragement since joining, it is only right you stick around and give me a chance to give some back.  I haven't done enough of that.  The board is far from perfect and those of us on it aren't perfect.  I know you want so much to fix it, but some things we just cant fix because they are not under our control.  You may just have to take it for what it is with all of its shortcomings.  Maybe you can just focus on the people side for a while and not try to take on so much trying work out the mechanics.

A crime novel sounds like a good idea.  Myself, I'm trying to read through "Genetics for Dummies" - serioiusly.  It has been many years since I have given much thought to genes and chromosomes.  I go to NCI in a couple of weeks and want to be able to comprehend whatever I'm told well enough to ask sensible questions.  Escaping to a crime novel sounds like a lot more fun especially if it doesn't have anything in it reminding of you cancer.

KLY always,

Kathy

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

General frustration is right, coupled with rebukes from various quarters, on this forum and others.  I have too many friends here to abandon CSN, just won't post as much, for the time being at least. 

Finished my crime novel - a really good one by a lawyer/best seller writer I know.  It was an escape from thoughts of cancer (well, RCC anyway) although it did remind me about criminals I've had personal battles with over many years, so it was escapism of a funny kind.  I hope you're now an expert on genetics - you never were a dummy so I reckon you'd have asked the right questions anyway. 

I've spent a lot of time today watching the exciting final to the UK Masters Snooker Tournament and it's now 1:30 a.m. so I'll defer responding to the proposal you made until tomorrow - my thoughts might change, too, if I hear anything from Greta.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Kathy, as you know, what I would like is a much more throrough and informative, friendly welcome for newcomers that would obviate the need for tedious endless repetition of the same old phrases and advice.  Better that it were all set up on a permanent basis, with modification along the way, as required by changing knowledge and useful tips, and that it was always there to greet a newbie, together with some guidance on searching our threads.

In addition, I would like to see better organisation to help everyone, new and old, in unearthing info they need - as outlined in the thread I referred to above and which you've just read.

Recently, Greta offered to arrange a "sticky" for us - i.e. a thread which would sit permanently at the top of the lists and would therefore be the earliest item many newcomers would come across so it could take care of the greeting to newbies and wouldn't need us to avail ourselves of your generous offer to copy and constantly paste, that greeting.  Greta appreciated that this was a compromise notion, as compared with my vision of a better overall structure, details of which she had passed on to the developers some time before the upgrade was conceived.  As an interim part-solution, she asked me what I felt about the idea and I've had some private discussion with another member here about the merit of the idea. 

It's been overtaken by the upgrade problems and Greta is, perhaps, awaiting seeing how the upgrade beds down.   I haven't heard from her for a little while.

Unless/until a more thorough-going solution looks possible, maybe we should think of asking for Greta's offer to be implemented.  It has been done to good effect on the Head and Neck Cancer forum.  I think that instance can be improved upon but I have little doubt that it has proved to be a boon there.

Have a look and let me know what you think - the "HNC SUPERTHREAD" can be found at

http://csn.cancer.org/forum/164

 

 

 

todd121
Posts: 515
Joined: Dec 2012

A welcome message at the top that's a sticky would be great. Many other discussion forums have this. In addition, many types of websites have a FAQ link for those questions that get asked often and answered often in the same way to cut down on this type of traffic.

I've been away for many days. Took a trip to Palm Springs prior to returning to work. I did read much of the thread you suggested, but I did not complete it. What I saw all looked like great ideas to me, the issue really seems to be getting these ideas implemented. As a software engineer, I understand sometimes when you start with something and want to modify it to be something else, it's often easier to throw the whole thing out and redesign it from scratch. It's never an easy decision to make, but software really isn't that different than hardware in that respect. If you've a five bedroom house and decide you want one extra bedroom, it might not be a problem based on hallway access of the current design. However, if you decide you want to move the kitchen and bathrooms, you've got a big problem since none of the plumbing supports the new layout and depending on how major the change is, you might really have to demolish the house and start over. :)

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Quite right, Todd, the mapping function between the requirements capture and the s/w architecture implementation  is anything but transparent!  You'll be very familiar with the s/w engineering principle 'If you don't have time to do it right first time, when are you going to have time to do it over?'  I fear there may be a bit of that in issue in the current Drupal upgrade exercise here.

I'm glad you like the idea of the possible halfway-house solution to be getting on with meantime.  I trust I'll get some feedback from CSN's Greta ere too long.

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