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Collecting kidney cancer information from Kidney cancer patients

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

As I've stated before, I find this site extremely informative and helpful. It's the place I run to when I feel overwhelmed and spewing with questions, and it's a Godsend.

One thing I question, though, in the spirit of each individual taking control of his own health, is there any site or collection area of a site that builds a voluntary data base in respect to kidney cancer patients by perhaps using survey monkey or some other questionnaire form. The questions I'm talking are questions about activities, food likes/dislikes, geographic information, as well as kidney cancer grade/type/stage, medications/treatments utilized, etc. I've never seen anything like that and maybe it's not practical. Or maybe it's out there and I just haven't found it.

I understand medical information is private and it would have to be on a voluntary basis, but as a Grade 4/stage 4 patient, my husband would be willing to compare notes with anyone. He would not even have a problem posting his pathology report.

If I'm talking crazy,just tell me. It just seems to me the medical world's focus should be broader comparing similarities and disparities, trying to find common denominators for this disease, and if this is happening on a broad base, I've never seen it.

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

Alice, I absolutely agree with you and I, too, have yet to find what we're looking for. It's the reason that, a few weeks ago, I opened a dialogue with the inestimable Robin Martinez, surely the most notable, incredibly well-informed and tireless long-term voluntary servant of our common interest.

There were a couple of reasons for that. One is that I find the tenor of the KIDNEY-ONC email listings (and its tiny UK equivalent) more focused than our forum here and therefore a potentially more useful source of experiential information from its subscribers. Many contributors there are victims of recurrence with a great deal of knowledge of the treatments for mrcc and the side-effects, prognoses, alternatives etc. There is a hard core there of highly intelligent, dedicated volunteers (of whom Robin is, I suppose, the primus inter pares) who selflessly field an impressively wide range of questions, typically from sufferers at the sharp end, like your Husband and myself.

The other reason was that I find the presentation of their listserv off-puttingly indigestible. The software pre-dates the Internet era and is, for me, unacceptably dated and user-unfriendly. Theirs is a volunteer outfit (no budget) who do not have the backing of an organisation like the ACS which affords us such a magnificent website on which we can exchange messages so attractively (including portraits such as yours. ;-) ). Although they enjoy the advantage of total independence, aside from being beholden to the generosity of L-Soft for the possibility of continuing at all, it seems a great shame that their valuable material isn't better presented and organised. I was trying to tear my Wife (who has been a database expert since before the Internet, pc's, minicomputers, etc - back in the days of Compuserve and beyond - are we really that old? alas, yes :( ) away from other things to consider possible low-cost ways of improving that situation. That course got overtaken by my going into hospital a week or so back for a repeat op and I've not yet 'picked up the threads again'.

KIDNEY-ONC has a huge archive and one can delve into that, as one can on CSN, with some well-chosen word-searches which will reward one with a lot of valuable info. on particular topics. I must confess that I have yet to properly explore either to the full extent, with a view to squeezing the best possible out of each. For instance, I haven't investigated the various destinations offered in the brown box to upper left under CSN, have you?

From my first joining here, in late November, just before my first op, I've sought answers to many questions, often jocularly (like my suggestion that Michigan sounds like a dangerous place for RCC) but with the serious intent that pooling of experience in a more structured way would be very desirable. Your last paragraph deftly captures my own sentiments. There is no mechanism in place for gathering patients' experiences together in a potentially highly productive corpus of information. Apart from us, directly, such a corpus would be invaluable for doctors, researchers and Big Pharma and would thus benefit us indirectly as well.

I hope you won't go to sleep reading this meander of mine, and that someone else might also read it. Meantime, on the specific point of comparing notes, I suggested this quite a while ago on the thread entitled "Sarcomatoid" - see http://csn.cancer.org/node/232634 - my first entry there on 18th January - and I've just lately given the summary of my own Stage 4 Grade 4 path report in reply to Angela on the "What are the 'normal' ..." thread. As I've advocated previously, I would be happy to compare notes with others in a similar situation.

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

We're both on the same wave length here. I feel like we're bypassing what could be the most valuable dimension of this site. And I hope more computer savvy people might chime in with recommendations.

I mean could an answer simply be an expansion of the profiles/registration pages on this site that would allow us to extrapolate info into something more meaningful?

I find it interesting that I don't think I can attach anything to this site. Yet I belong to a couple of feline boards through yahoo, and one of those boards is for a fatal feline disease, that one of my pets succombed to a year+ ago. On that site, I attached all her blood work reports, her written diagnosis, and information about a trial drug used for cats with this particular disease. But that same capability doesn't seem to be available here. But, admittedly I haven't checked out everything on this site.

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

OK, Alice, I'm prepared to see if anything can be done.

If so, then we need an initial stage of requirements capture. Can we brainstorm this a bit?

My initial thought is that RCC is so different from other cancers, e.g. with respect to diet, to take an obvious example, that there should be an information stockpile that's exclusively for RCC. If it proves to be useful, it could serve as a template for other cancer forums on CSN and maybe elsewhere, mutatis mutandis.

My next thought is what sort of nested/tree structure, or other form, it should comprise.

We might want a relatively restricted high-level topic list with very transparent names into which information could be dropped. (I've seen a noble effort on an investment forum devoted to a particular high-tech stock, to retrospectively catalogue numbered listings (we don't have the benefit of message numbering available to us) according to subject-matter. That, inevitably fell foul, to some extent, of the cross-classification problem. That we could dodge by setting up the structure in a fairly complete form beforehand, so that contributors could readily determine where their info. best belonged.

What do you think? This may all be blue-sky thinking but in the hope that it could get somewhere, I'll start the ball rolling with a list of topics I see as possibly suitable:

1. General: – this would be a place where we would, from the outset, list valuable sites where fundamental information can be found so that we don’t keep re-inventing the wheel. The first I would list is Steve Dunn’s site. Another essential would obviously be all the other riches on the ACS site apart from our CSN forum here. I have, as many of us probably do, a list of other excellent cancer information sites and they could also be listed here.
Staging and grading? I suspect that this sort of info. would be best made into a branch under ‘general’ since it’s not contingent on messages from us but is established material that newcomers just need to be pointed to. I think there are probably quite a few headings that should similarly be sub-sections of ‘general’, rather than being separate topics. You may care to think of some.

2. RCC Sub-types: would not fall into that category because here we would list the sub-types (clear cell, chromophil/papillary 1 & 2, chromophobe, collecting duct, translocational, with branches - for collection of data on each as a separate branch.

3. Modifications: namely granular, rhabdoid, sarcomatoid could be branches under a separate topic or sub-branches under 2. ?

4. Depression and anxiety: and their treatments

5. Exercise: is a topic close to my own heart but, like it or hate it, it has a very important role in the management of cancer so listing authoritative sources of guidance could go here, or it could go under general. What would fit here, for sure, would be comparing notes on our own experiences and taking guidance from physical therapists like Foxy.

6. Diet: again is a topic where some basic sources could be listed under general and comparing notes could be done, maybe with some carefully chosen branches (alkalinity? Veggie/vegan? food-drug interaction? Grapefruit effect? supplements? hazardous foods, etc)

7. Surgical treatments: would be divisible between NSS (nephron-sparing surgery, i.e. partial nephrectomy) and radical, with each being further divided between open and laparoscopic, the latter also divided between manual and robotic

8. Drug treatments: could be sub-classified as between, e.g. chemo, cytokines, targeted therapies, etc (with help from someone knowledgable, to make it sensible).

9. High energy treatments: to include the various types of radiotherapy, HIFU, thermal ablation and cryoablation (here, too, with guidance from someone with relevant expertise to get it right)

10. Side-effects: which could usefully be broken across the various treatment modalities. This is an area which, as we’ve already agreed, could be very valuable to medics, researchers, pharmaceutical companies as well as ourselves.

11. Diagnostic technology: would cover physical examinations, cytology, cystoscopy, the various scanning techniques (including contrast media), genetic testing and so on

12. Mind-body medicine: which would encompass areas like meditation, guided imagery, prayer but as distinct from

13. CAM (complementary and alternative medicine): where the whole gamut of homeopathy, tissue salts, Bach flower remedies, reiki, acupuncture/pressure, massage, music therapy, sleep disorder management etc could be aired

ADDENDUM

I think something of that kind could be very useful but I want to explain where it would fit in.

IT WOULD NOT BE in place of the existing structure of threads, but additional to them. With luck it would be a place where we could distil out hard, useful data on a more permanent basis that could be easily available to us all, and especially to newcomers.

The essential additional functions of the threads – e.g. allowing people to vent, rant, ask for help in coping; to give messages of support and promises of prayer; to give practical information and advice that is essentially individual (e.g. specialists in a particular location, dealing with a personal drug interaction situation, or other items that are not of general applicability) to tell jokes, greet friends, give good luck messages etc. would, I hope, not be allowed to clutter up the more permanent database, I envisage.

I say this because, to give credit where it is due, I believe the CSN had anticipated the desirability of something like this and had given a hook to hang it on – the Member Resource library, available via the brown side-bar at top left.

However, I believe that, as a result of no rules being laid down, or structure given, that has missed its mark and become really just another set of threads, but even more chaotic, so that it is of very limited use in trying to dig deeper into a particular subject. New threads are generated with no relationship between them, with “push-down storage” (latest message first) and arbitrarily named. As a result an opportunity has been missed and I would hope that we could prevent that from happening again.

Our threads are too ephemeral to capture valuable material properly – new threads are created where a suitable one already exists, newbies coming on keep re-inventing the wheel, unaware of what has gone before, people whose stories we may wish to keep in mind disappear in the legion of messages because of the purely chronological organization of messages.

In short, we need a method of meaningful abstraction of the good information coming up here into a less transient form that anyone can mine more productively for answers.

angec's picture
angec
Posts: 663
Joined: Mar 2012

This is all a great idea. It would be so helpful in areas that fall short on the board. Many of you have so much information and are so positive it has been a great help to me. Speaking about the homeopathy. I would really love it if you can include the link from Dr. Banerji's site. He is advanced and there is no other branch of homeopathy like his, which has specific remedies tailored for certain diseases. I studied homeopathy years ago and i also took it from several experts before. And although it gave me some relief not much, finding Dr. Banerji took me off of 13 allopathic medicines that nearly gave me cancer. So happy to say it really works well. I so hope someone on this board can benefit from him. So if any questions about his medicines please let me try to answer for you. I would love to help out. This is his website. www.drpbanerji.com He has a wealth of information about preventing spread and recurrence.

You are all on the right track, i pray that you are feeling well and continue to put those gloves on each and every day! I know I am fighting for you all and praying for each and every one of you.

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

You are phenomenol; amazing list. While you capture an amazing amount of info in your outline, my initial thought is where will the location/environment info be captured? You, for example, question the Michigan factor and I question the greens (golf) factor. And it wasn't transparent to me where that would be gathered. (But it could have flowed right over my head.)

I'm not finished commenting (sorry) but I do want to get home and sit down with the list and study it.

I see this as a potential valuable tool for anyone connected to kidney cancer and hope we* (*everyone reading this) can make it materialize. It could be of value from so many angles. I'm not sure if I can offer much personally but I'm willing to give it my best shot.

Fishknees
Posts: 73
Joined: Mar 2012

Word Press offers websites that can be developed for whatever purpose. I belong to one that is owned by one person but threads are moderated by others.

This would be a big undertaking for one person. The owner of the website I go to has hired a computer person since it has become so large.

For informational purposes it would be great; but, it would have to be stated that it is informational only and not statistically significant. Then you would probably have some HIPPA problems.

I am not trying to throw cold water on the project. I think it would be great; but, it would have to be totally informational with reservations on the validity of the information.

Just saying!!!

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

Fishie, I'd better not stick my neck out, all the way from Scotland, but I don't think we'd encounter any such problem. What I'm proposing (and I think Alice is also envisaging) is simply an additional area within our CSN kidney cancer forum. It would be gathering experiential documentation from members here but no-one would be endorsing the data as gospel.

I'm involved in a couple of colossal world-wide Word Press sites where the manpower and server farms are of unimaginable magnitude but i don't think we have to think of anything like that.

It seems to me that we just need the facility to better organise what we have going on at present, by sifting out the material we would like to see easily findable by anyone wanting to dig deeper on a particular topic. [I've had an amazingly exciting long weekend and an astonishing day today so I'm a bit too tired to express myself well at this time of night but I hope my gist is clear.]

Thanks to you and, of course, Alice for responding. If no-one shoots the idea down in flames, more thoughts from anyone here would be useful in firming up and improving a first model.

Fishknees
Posts: 73
Joined: Mar 2012

I think it is a great idea. I do think it would become a very large website. I was amazed when I came on the American Society Network and saw how many new people join each day. I agree there are a lot of posts that I liked but had to go back many pages to find. Something like this would be great.

Were you thinking of going totally off this site. I personally think it would be a good idea because it seems like the American Cancer Society website is overloaded and is moving very slowly and sometimes not at all. Maybe just a site called Collection of Information for Kidney Cancer from those who have been there. Then as a suggestion maybe Articles, Medicines, Inspirational, Exercise, Nutrition etc. Maybe a person that has been trying different medications could moderate that thread. It sounds like you have many Articles and are interested in exercise. Just thinking.

I think Kidney Cancer is one of the smaller or small to mid size sites. By mistake I got on the Breast Cancer website. (I don't know how) and WOW. So many people and so many in bad shape.

I am sure ACS would let us have a Sticky at the top page to lead people to the website. (Maybe not)

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

Alice, I'm not sure that we could hope to pull together any meaningful epidemiological data.

Soon after I joined here, last year, I jokingly suggested that you're at higher risk of RCC if you satisfy any of the criteria: named Gar(r)y, live in Michigan, play golf, ride a Harley. The only semi-serious parameter was Michigan, just because I noticed many of us here seem to live there.

It would be fun if we could throw light on geographical incidence/prevalence but I was only hoping someone already had some reliable data on the matter. Even when you seem to spot clusters you're always subject to reaching a, post hoc ergo propter hoc, fallacious conclusion. I'm not sure that we could hope to pull together any meaningful epidemiological data ourselves. It was my hope that we might highlight some possible factor(s) that would be worth someone pursuing more seriously.

I look forward to more feedback Alice, when you've had time to think about it some more.

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

Sorry for the delay in getting back to this. Just finished two 14-hour days at the Bank with our joint board of directors meeting, though I had promised to back off on this annual event this year in anticipation of retirement next year. (Let someone else take lead.) But it didn't happen.

Though working, I've still kept your outline in mind. Given the fact that we can't include much in the way of epidemiological data, I think your list is amazingly inclusive of what we can.

I am concerned about only a few of us voicing interest in this. I had hoped other great minds on this board would pipe in with why it's an interesting/good idea or a terrible/impossible idea. Feel like I'm missing something.

I can understand privacy concerns (as what goes on the internet stays on the internet) but it's my understanding that this board maintains anonymity and, if information were allowed to be posted, personal identifiable information would be removed.

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

I think its a great idea, I'm just not tech-savy enough to be of much help.

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

I'm with you on that Gary. TW has a great outline (and a great mind) but I'm at a loss on how to contribute at this point. My mind recognizes the need for such a mechanism but my tech and subject knowledge are elementary. TW - how can I help?

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

You can extract reagional and local information from the National Cancer Institute Surveillance Epidemiology and End Results web site. I just google SEER, its right at the top. It took me several attempts but you can filter the data there. They don't have it by Golf Course yet but they do have by state and I think even major metropolitan areas. You can fileter by gender, age, race, stage, cancer type. It will give you maps, graphs, charts, etc. on occurance, survival, trends over time. It kept me busy for days. Very interesting.

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

birdiequeen, that's just great! Thank you so much. I was a bit surprised no-one had done this but I hadn't found it. Can't wait to go there and look up Michigan. We have some small amount of data in the UK but not much I'm aware of. It will certainly address Alice's question of looking for possible hints on carcinogenic environmental factors, even if she's disappointed that it's not broken down per golf course :)

While you're visiting here, what do you think about the idea of a more permanent reference database of topics for RCC?

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

'Database' is an overblown bit of shorthand and the envisaged enterprise is better characterised in Alice's formulation - of collecting information from kc patients.

Alice, yesterday you captured my own sentiments when you said:

"I am concerned about only a few of us voicing interest in this. I had hoped other great minds on this board would pipe in with why it's an interesting/good idea or a terrible/impossible idea. Feel like I'm missing something."

My initial response was 'Well, it seems it's not of much interest to anyone so maybe I'd better just follow Mike and go away and get on with my life!'

However, if it's feasible then it might catch on and commend itself to more people. I was still vacillating when Gary came through with his reaction yesterday and that tipped the balance. It made it clear to me that some may be shying away from contributing on this thread because they don't know what to say.

So, I hasten to explain that no tech-savviness is required. That would be brought to bear from the ACS CSN team. If we can express a sensibly framed request, they can assess whether they could do the necessary to meet it. [That is not a foregone conclusion - the mapping as between end-users' requirements and software provision is notoriously opaque. With all the advances in software production methodologies, software engineering and the object-oriented paradigm itself, it's often the case that what looks like a simple task to the customer is actually inordinately difficult to implement and, vice versa, that something the prospective user doesn't dare even dream about can actually be accomplished at the drop of a hat.]

Therefore, what I think we need is, for instance, an informed working over of the sketch I've given, correcting classificatory errors, suggesting other topics, or merging some, dropping others - whatever it takes to make it as sensible as possible. Alternatively, to come up with a whole different vision for achieving the task Alice foreshadowed.

I've now put the general question to the CSN Webmaster and am hoping for a response ere too long but I've eschewed suggesting anything in detail, not because I don't have the temerity to do so (I make a fool of myself often enough to be inured to the consequences) but rather to avoid constraining the creativity at the other end where an inspired solution we haven't imagined could be forthcoming.

However, here maybe I can make one modest enough proposal.

To the left of your window, below the blue side-bar, is a list of threads. [At present, on my screen it shows "shrank by 50%" followed by "Adios everybody", "CT scan tonight", "Thoughts of TW and Friday...", "Integrative Medicine", "Targeted Therapies for Kidney Cancer" and "Hats off to Faye." Below that is "more" which for me goes nowhere, apparently due to an overload problem. Perhaps I'm being obtuse but I presume that's the same for everyone at present - would someone kindly confirm please? I certainly don't recall doing anything to 'bookmark' those particular threads and i don't know the criteria by which they were selected.

If that list were to be supplanted by a meaningful menu and sub-menu listing and structure, it might meet our needs to a great extent? What do you think? Is that too unambitious? Would it represent a wasted possible opportunity or might it be a worthwhile compromise of ambition for achievability? An arrangement not much more inchoate than that served the magnificent Steve Dunn site pretty well! At the very least, it would enable visitors here to 'drill down' much more effectively to seek answers to specific questions.

If that could be a way forward, then development of my quick, back-of-envelope design may be worthwhile. For instance, might we want to have a menu (or a sub-menu) heading for cosmetic issues like "the Bulge"? How about general aches and pains - e.g. persisting pains where the removed kidney was? I think we would need to bear in mind that the objective is rather to gather patient-experience information not readily available elsewhere and NOT to simply reproduce hard data that can be found from authoritative professional sources. The latter, you'll recall, I've suggested could be pointed to under my first category of "General" which would flag valuable sites.

The issues of sub- and cross-classification problems need to be thought about. For instance, I've not so far suggested a menu item about bodyweight. That obviously has cosmetic implications but, aside from that, one might want to have branches that deal with, say, obesity and cancer cachexia. Cachexia might be deemed to embrace sarcopenia but maybe the latter would be more appositely reached via "Exercise"? Conundra of this sort could perhaps be resolved by the simple expedient of having cross-references to other parts of the structure? [Don't want this whole thing to get to look too much like a tumour with unclassifiable variants at the molecular level! Sorry, probably shouldn't have said that but can never resist levity for long.]

Opinions please!!!

PS the SEER site makes Michigan look entirely unexceptional. However, as bq mentioned, it doesn't actually deal adequately with Michigan golf-courses as a special category :-)

foxhd's picture
foxhd
Posts: 2055
Joined: Oct 2011

Most of this discussion is over my head. I am probably the most computer illiterate on board. I'd volunteer my info but much of the diagnosis specifics I had only stored in my head, and some has leaked out.

j_rod
Posts: 125
Joined: Mar 2012

...in computers, databases, programming, and the like....I do not have the room in my head for helping in this area. Just thinking about it makes my head throb. Good luck Tex et.al. in working with the CSN group to create such an organized site.

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

I'm assuming I'm looking at the same side bar you reference. Mine has "Votrient; Stage IV clear cell carcinoma; and carcinoma with sarcomatoid and rhaboid features; and then a friend listed. I'm not sure what relevance it is but I don't have "more".

I also did try to listen to the Horizon cancer episode but right now it looks like it's only available to U.K. residents, but says to check back later. So I will. Thanks for allowing me to bookmark.

Today I want to check out birdiequeens SEER suggestion. Haven't gotten a chance to get to it yet. John's having a lot a shoulder pain and interfering with regular day to day activity. He said to me last night after going out to dinner with his son he feels he goes one step forward and two back.

How are you feeling? I know you mentioned having a bad or didicult day a day or so ago. . .

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

I'm assuming I'm looking at the same side bar you reference. Mine has "Votrient; Stage IV clear cell carcinoma; and carcinoma with sarcomatoid and rhaboid features; and then a friend listed. I'm not sure what relevance it is but I don't have "more".

I also did try to listen to the Horizon cancer episode but right now it looks like it's only available to U.K. residents, but says to check back later. So I will. Thanks for allowing me to bookmark.

Today I want to check out birdiequeens SEER suggestion. Haven't gotten a chance to get to it yet. John's having a lot a shoulder pain and interfering with regular day to day activity. He said to me last night after going out to dinner with his son he feels he goes one step forward and two back.

How are you feeling? I know you mentioned having a bad or didicult day a day or so ago. . .

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

Alice, first things first - please give John my best wishes and tell him i hope his shoulder pain clears up soon. Have you found anything to help give him relief?

It seems our thread lists to the left are all different. I don't know how mine arrived there. How about yours? Is Votrient significant for you? As it happens, we've been casting about to see if there's anything that could possibly be of utility to me if I'm about to find my back to the wall and Votrient could well be a possible (Pazopanib trial even?).

Anyway, the provenance of our present lists is immaterial to my suggestion for possibly using that space to accommodate a top-level menu of KC topics.

Please tell me what happens when you try this link

http://www.bbc.co.uk/iplayer/episode/b01g7lhb/Horizon_20112012_Defeating_Cancer/

I collected the wooden spoon at my golf Winter League Dinner on Friday evening - a hard school, since I lost 24 points by missing 8 of the 21 matches (but then the guys didn't know I'd been "unwell". I've also collected a stinking head cold so a miserable weekend sneezing often and violently and coughing until my whole torso aches. Antihistamines and paracetamol are helping a bit. I'll be fine again in a day or two (aside from the other little matter!).

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

TW,
Sorry, I have not replied before tonight. My husband and I went to visit my Daughter at college, to show her "Dad is ok” I think the trip helped.
I'm glad you have found the SEER website useful. I'm a numbers person and found it very informative. I also like the interaction and personal stories shared here on CSN. I wish we could speed it up. The search area helps new people search the topics they are interested in but sometimes being new you don't know the questions to ask. So I see where some set of information could be useful for new members to read through. I noticed here on the KC site many members keep a topic going for a long time which is different than the EC (Esophageal Cancer CSN), they start a new topic for everything. The blue bar topic area you mentioned I think is generated from your friends list and is therefore different for everyone. But, you may be able to start a thread that covers all the topics you out lined and then tell new members to friend you and look for the “new member information/orientation to KC” Or you could direct new members to just search the title of the tread you start. It’s very possible I do not understand your vision for this information. The other thought that crossed my mind is the outline you gave could be set up as a sub-set. So when anyone starts a new topic they would need to indicate which category the topic belongs. Then it would be possible for people could search by category for information, when they are searching for answers. But again getting a personal reply from a member here on the site to a question builds community and gives you a sense of belonging. So even though all the great long term members here probably feel like they are typing the same thing over and over again. Each time you do, you are truly each someone on a level no “informational section” can.
You will have to tell me more about this wooden spoon “award” in golf. I have not heard of such a thing, but I’m not a member of a weekly group either. The reason it peaked my interest is because my maiden name translates to wooden spoon in German.

icemantoo's picture
icemantoo
Posts: 1653
Joined: Jan 2010

I checked the SEER site for 5 year survinal rate of RCC which is localized in the kidney only (Stage 1 and some Stage 2 and it is 90.8%. Given that 1/2 of those diagnosed are 55 and over and have a 1 to 10% chance of dying anyway from other causes as a result of their age, it is my interpretation that those of us with Stage 1 RCC and small tumors have as close to a 100% survival rate as possible and we are destined to leave this world as a result of something other than RCC.

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

You are right about the blue side bar. I only have one friend noted (tears) and the Votrient and Stage IV Clear Cell Carcinoma. . . are links she started.

John still has shoulder pain. He has some pain meds given by his oncologist but they don't seem to get the job done. Unfortunately, both he and I have relied on ibuprofen for pain relief in the past but with only one kidney, he's veered from that practice. Oncologists office is supposed to call today and schedule a scan. Thanks TW for asking.

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

Am I addressing Ms. Holzlöffel?

That was a very informative and useful posting for which many thanks, bq.

Before getting to the more serious stuff, here'e the deal on spoons. The wooden spoon as a booby prize goes back hundreds of years in England. Wikipedia has an interesting entry about it. It's particularly apposite in golf because of the UK practice of playing competitions for either medals, as prizes for winning a competition, or SILVER spoons. So, a wooden spoon is in marked contrast to a silver one and goes to the person who came in last. Our Club professional photographed all prize-winners on Friday night, including me. Our wooden spoon is huge and I endeavoured to hide my face behind the bowl, with only partial success. I was going to adopt it as my new picture but my Wife has embargoed that on the grounds that it's too much my Christopher LLoyd look (movie "Back to the Future").

Thanks for your insight on the personal threads lists. It appears as though they are generated for each individual from threads originated by the individual's 'friends'. There must be a space constraint because I don't have one for Fox - e.g. MDX-1106.

Many of the forums are like the EC in being ruined by people constantly and unnecessarily starting new threads. That's fine as regards ephemera but infuriating for the meatier stuff that one would like to keep tabs on. Your suggestions are illuminating in demonstrating that I have not explained myself as well as I should have done. I don't want to start a new reference thread and I don't want to go outside, as Fishie mentioned as a possibility. Nor do I want to trench on the individual-focused message side of our community. So, let me have another attempt at summarising my 'vision'.

Depending on the spec of the software package template the CSN Webmaster is using, we might have some space available in place of the threads list, or perhaps lower down, below 'friends' in the brown/blue/white sidebar which appears with Discussion Boards and also with Kidney Cancer and the individual threads - i.e. it's permanently on display.

I see something like my list going there. Hitting a topic heading could then lead into a sub-menu system, the composition of which is up for discussion. This is the same as clicking on "Discussion Boards" and getting to the cancers sub-menu and thence, after clicking on "Kidney Cancer" getting to the next sub-level of our threads.

This would thus be separate from the ongoing and ever-lengthening list of threads, where the community and personal aspects would continue as usual, unabated. It would also be distinct from, and an adjunct to, the useful information and facilities listed under the brown and blue boxes. The latter contain reference materials of a general nature, useful to, in particular, newcomers to this world.

What Alice and I see as needed are specific pigeonholes for new permanent information that will be easily 'drilled down to' via the new predetermined list of topics. This could be invaluable as an archive for newcomers here, old-timers here, researchers, clinicians and drug companies. It would not contain the sort of social information, humour etc we have in our threads and it would not be for housing the sort of well-established information available on the major information sites (or via the blue sidebar here). However, I suggested that the first item of my proposed main menu "General" could be a place where we would list authoritative general sources and top information websites.

It might be clearer if I give an example or two. Fox is maybe going to unearth (Fox, 'going to earth' :) ) an article he mentioned. I asked him for the reference. He could send me a private email but, because the article would interest lots of us here, it would be better for him to put it in a message on the thread. If my plan were implemented he could also add it to a thread where it could be found by drilling down from the new list - maybe under “General” where we could build in a sub-menu item , “Immune system” or perhaps we could usefully have a main menu item headed "Immune system". This sort of issue is why I think we would need to thrash out an optimal menu structure at the outset.

Another example might be me pursuing information on the side-effects of Votrient. I can go to plenty of sites for that and I can look at the manufacturer's leaflet. But I really want the low-down on what fellow patients here have found out the hard way, and any tips they have on the best ways they found to cope with the side-effects. So, I'd come here, find 8. on my suggested list "Drug treatments" --> a sub-menu of "Targeted therapies" --> "Votrient/pazopanib and maybe even down another level --> "Side-effects". That way I could almost immediately get to exactly the sort of information I'm wanting, always assuming someone had posted something there!

Simillarly, on metastatic sarcomatoid chromophobe RCC, someone could go to the new thread I've just started, which will probably very soon drop off the first page of KC threads and disappear without trace without ever having attracted a reply. Anyone who might be interested in the topic will probably never find that thread. Alternatively, an investigator could go to 2. RCC sub-types, or 3. Modifications (depending on the way we've set up the menu structure) and drill down, e.g: RCC sub-types --> Chromophobe --> sarcomatoid --> metastatic. That would take a matter of moments. If they then found there was nothing there, they could draw their own conclusions. They might also want to make a posting there (e.g. 'I knew someone who had that but he died.')

As an example of indirect value to us, it could be a great source for clinicians and drug companies to keep an eye on the major side-effects and the ways of managing them that appear to be most favoured by us.

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Yes, I was Ms. Loeffelholz before getting married.

It's hard to hear that the wooden spoon is a booby prize dating back hundreds of years. I probably shouldn't tell my husband, he may feel slighted that he ended up with the wooden spoon.

I like your vision, but I get hung up on the implementation. Who would decide what belonged there, how would it be filtered....I see a host of road blocks to that in my mind. But, there is certainly room for improvements on the discussion boards and those are very good ideas.

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

bq - who says Germans don't have a sense of humour?!

I value your feedback and so I wonder if you could illustrate with an example of a prospective problem. I've suggested how someone wanting to tell about their experience of side-effects from Votrient might choose where to make such a posting - go to list at left and choose --> Drug treatments --> Targeted therapies --> Votrient --> Side-effects or, depending on whether the final structure contained a first-level option of "Side-effects", go to Side-effects --> drugs --> Votrient. If eager to draw everyone's attention to somethingimportant, the poster might want to put a short message on a current thread, saying 'I've just posted about the horrible side-effects I've been having on V. - see via the main drugs thread/side-effects thread.

My idea is that a whole structure of menus and sub-menus would be thrashed out between all here who care to pitch in. It could be adjusted in light of experience over a sensible period of time. if well conceived it should be easy for someone to decide where to look for info. and, equally, where to post it.

Obviously a message of an entirely personal nature directed to a specific person, particularly if close to being a phatic communication, should go only on to the regular threads, as at present. The choice of where to post would be made by the poster in exactly the same way as we do now.

No additional issue of authority would arise since the postings would still be essentially just the posters narrating their own experioences - factual.

I'm not clear what you mean by "how would it be filtered". What roadblocks do you foresee? The sooner we can identify major problems the better.

Olsera's picture
Olsera
Posts: 38
Joined: Dec 2011

Hi TW,
It is too bad that so much valuable information gets lost in the threads I know I have lost information & gave up looking for it again. I think you have the right idea on how it could be set up, thank you for taking this on. Have you looked at the www.kidneycancercanada.ca/ website the discussion forum is set into categories not quite as organized as you have suggested & unfortunately there isn't the information that is here.

I am glad they got clear margins this time & I hope that will be all now.

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

Thanks for the link Olsera. I've spent the last hour or so there. As you say, there's not a lot of info there - I searched re my condition (sarcomatoid chromophobe) and only found one patient with it, whose wife posted two years ago, got no help of any substance and hasn't appeared again.

You're right about the classification there. The embryo of the idea of more systematic organisation is there but it wasn't thought through and implemented in a sensible schema. The result is another wasted opportunity. I think what Alice and I envisage hasn't been done anywhere yet. It would be all the more valuable for that reason and I believe the CSN is the perfect location for realising some form of that vision.

I do hope the CSN Webmaster will view the notion with favour and will be able to assist us in creating a ground-breaking development which should have a huge payoff for everyone.

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

I'm preparing to be out of town for a couple of days on business, therefore I am very short on time right now. But will address your questions when I get back. Sorry!

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

Poignant words, bq, and I'll be glad to have your thoughts whenever you do have the time.

Jeff2159's picture
Jeff2159
Posts: 105
Joined: Feb 2012

ah the wooden spoon, it brings back memories of getting my rear beat when i was bad, slow learner I guess--lol

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

Alice, i hope there's a turn for the better for you and John in the next couple of weeks.

Meanwhile, I've just had a charming and encouraging response from the CSN team about the development we'd like to see, so watch this space, as they say!

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

This is a revival of this thread for Phoenix's delectation!

jtebo1955
Posts: 46
Joined: Apr 2012

Just dropped in here to see if anyone here has had esophageal cancer. I had kidney cancer in 2008, accidental finding..long story. Anyway right kidney was removed and was told it was contained not to worry. Had CT scans every 6 months 18 months after scan showed "thickening of the esophagus" had barium swallow. Dr says just reflex. 6 months later stage 3 esophageal cancer. Anyway, I joined the EC message board and have seen several people with both. 2 different cancers, I would strongly suggest getting esophagus checked, there might just be a connection.

Judy
2008 kidney cancer
2010 esophageal cancer

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

Judy, thanks for the heads-up. You might want to take a glance at a couple of other threads here. One is entitled "Two cancers" and can be found here:

http://csn.cancer.org/node/246170

The other is "Bumpy Year" at

http://csn.cancer.org/node/242569

Meanwhile, this thread is particularly for Phoenix Rising and anyone else interested in making this forum even more valuable to patients, carers, researchers, medics and Big Pharma.

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

This is such an important and central topic that I'm bringing this thread up to the top again so that it doesn't get lost.

angec's picture
angec
Posts: 663
Joined: Mar 2012

Hi Judy, how are you doing? Just wondering how they treated your esophagus cancer and how you are doing now? I hope you are doing well.

Eliezer2
Posts: 58
Joined: Aug 2012

It may not be scientific survey data, but you can learn a lot from the forum particpants. Tell us what you want to know

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