Having second thoughts... Is the risk of cancer worth it?

[RichardMEL]

BrandyChloe, I would want to report that doctor. He gave you factually incorrect medical information because he wished to have you follow his agenda. I find that unconscionable and am glad you followed your own path.

Totally agree with this. I was aghast when I read that!!! While the technology of transplantation has improved a lot over time, a live donation is ALWAYS preferred due to the fact you can plan it, and take the organ in a controlled way, and the organ/donor body won't be under duress or have any other problems with it - it is the best possible situation to be in.

[cariad]

I think once the skin cancer started to grow, for my boys James and Gregory, then the immuno suppressants allowed the growth to be faster bigger nastier.  Whereas if you were a person not on immuno suppressants it might be a slower trajectory and more effectively treated. 

I believe this, too. I think immunosuppressants take the risks you would have already faced, and amplify them. So the issues you would have probably encountered regardless come on younger or more aggressively. I also think that where one lives is a big factor. I have heard that New Zealand has laws rendering sunscreen compulsory for all children, and I've been told it's down to sitting under a giant hole in the ozone. I think in some ways transplant patients are more aware of skin cancer risks, and therefore better motivated to reliably use sunblock.

I had to look up spruiker, even though the context made it clear what you were saying. No idea how to pronounce it, though.

[Sunny]

Yes, the risk of cancer is worth getting a transplant.
You mention you have children. It will be easier on your children not to deal with dialysis because dialysis is something they see and know and feel the consequences of, just as you do. With a transplant, you will have more energy and your children won't have to deal with your issues of dialysis. If nothing else, do it for your children.

[Hemodoc]

The risks of cancer post transplant are much overlooked especially in the popular press that looks at renal transplant as a cure.  Unfortunately, it is a treatment option with its own set of complications including a much higher risk of cancer.  Research shows that some immunosuppressant regimens are more likely than others to increase the risk.  Skin cancers in transplant patients are an especially deadly combination with renal transplant.  It is not melanoma so much that is the issue but instead Squamous Cell Carcinoma that in patients with normal immune systems is relatively benign but in transplant patients can rapidly prove deadly.  I wrote about this issue shortly after I joined Bill at DSEN:

http://www.billpeckham.com/from_the_sharp_end_of_the/2008/05/deadly-skin-can.html

In addition to the skin cancers, one of the most dreaded transplant complications is a form of lymphoma called PTLD which stands for Post transplant lymphoproliferative disease. It is especially prevalent in pediatric renal transplants in up to 7% of cases and carries an exceedingly high rate of mortality.

http://emedicine.medscape.com/article/431364-overviewl

The culture of renal transplant as the ONLY effective treatment option for renal disease lends to an overlooking of the risks of renal transplant not only in the popular media, but also in the manner in which the risks of transplant is portrayed during informed consent.  Having gone through the transplant informed consent myself, I have been greatly shocked to learn over the last 4 years of the many complications that were completely glossed over by those that gave me my informed consent on transplant.  When I developed an early melanoma one month after starting dialysis, I dropped the renal transplant request.  I have found very few people who are considering transplant that even know of the high risk of cancer post transplant.

It is a real risk that I personally believe is belittled by the medical community since they compare transplant only to incenter dialysis.  I have yet to come across many nephrologists who give a truly informed consent on these issues since in their mind even with the increased risks of cancer being well documented.  It should give all those considering transplant pause before running off believing that all of their problems will disappear with a transplant.  For me,  the risk of cancer is prohibitive in my mind and I will take my chances at this time with daily dialysis which has equal mortality compared to cadaveric transplant.  It is not an open and shut comparison between the options, there are personal decisions to consider.  The only way in which to make a truly informed decision is to know and understand as much about the individual options as best as possible.  In such, I believe that the renal transplant informed consent procedure needs to evolve into the same framework that it is found in all other aspects of medicine that I have been involved with.  It is a much different standard than in other areas of medicine.  For many it is the best option, for others such as myself, I do not have confidence that it would be the best way to go.

Now, as far as PD, it is an excellent bridge to transplant but at present it does not offer equal mortality compared to cadaveric transplant as daily dialysis has been shown.  The issue of needles was a huge issue for me.  I hated to even have a PPD done annually with a tiny needle.  Now, doing home dialysis, sticking a 15 ga needle in my arm is not fun, but it is not in any way something that I can't do.  i simply suck it up and just do.  The first time you self cannulate is very scary, but after a fashion, I would never want to have someone else stick me.  Once the needles are in, there is no discomfort for me.  I would not rule out daily dialysis as a viable option if you decide that you have no peace of mind over the renal transplant.  Every one has their individual preferences.  It is the duty of your medical team to give you all of the information that you personally need to make that decision.  Fortunately today we have incredible access through the internet to highly detailed information on all of these issues.  Learn as much as you can about all of the options and then discuss them openly with your medical team.  You may decide in the end that transplant is the best option but you deserve to know and understand exactly what the risks and benefits are before you proceed in either direction.

I wish you the best in your decision. 

[natnnnat]

spruiker
rhymes with puker. 
rhymes with filthy lucre.
ah!  rhymes with snooker.

This is the delightful thing about an international forum however:  now I will discover that people pronounce these four words differently in the USA or the UK.  Here in Australia, all those words rhyme.  Well, if puker was a legitimate word, which maybe it is, then it would rhyme with the others.   : - )

[edersham]

This thread is beginning  to remind me more of the college football fan websites I lurk on than a typical ihd thread. Everybody has to make the decision that's best for them but for me personally I wouldn't trade the three 1/2 months I v'e had since my transplant for 25 years on dialysis. Ive lived more, happier stronger done more than I ever dreamed possible during my time in ESRD. Iget up at 5:30 every morning and go nonstop until 9 PM every night. I was present for my first grandson's birth in Alaska last month and got to hold him before he went to infant icu(5 weeks premature, he's fine now. )That never would have happened if I had been on dialysis(to weak to travel and I might not have lived to see that day. My donor friend Christie is doing extremely well and is so happy she did this. She has never had children  I says she now feels fulfilled because she knows she gave the gift of life. During my short time(2 1/2 months) on dialysis Fresenius would never tell me my creatinine level, only that I was getting adequate dialysis. Now i know why.
Mycreatinine was 5.0 when I started dialysis and it was 7.5 the morning of my transplant 12 hours after my last dialysis treatment.
Yes I was fully informed of the cancer risks and every other side effect of the anti-rejection drugs by Mayo in Phoenix before the transplant and when they asked me if I was still ready to proceed I said I've never been so ready for anything in my life. The manager of the clinic where I got dialysis seemed disappointed that I was getting a transplant but the nurses and techs that took care of me told me privately how happy they were that I was getting a transplant because they hated seeing how rapidly I was declining before their eyes.  The dietitian at the clinic moved from Arizona to New Hampshire and when I called her a few weeks ago she told me the same thing. My Neph strongly urged me to get the transplant even though if anything she had more of a financial interest in me staying on dialysis because her practice supplied medical services to the clinic where I went. I realize everyone's desires and needs are different but those are mine.

[chook]

I have found this 'conversation' very interesting. I am nine weeks into APD and have experienced hardly any problems. I feel better although I didn't really feel terribly ill before starting. My hubby had tests to be a donor but was found to be predisposed to kidney stones and although he has never had one stone, this stops him from being a donor. I am yet to be activated on the transplant list and with my treatment at the moment going so well, am wondering if I want to be. I live in a very sunny hot part of the world and my early years were spent doing lots of swimming, so the skin cancer thing seems to be a big issue for me. I have a history of cancer, with one sister having breast cancer and another dieing of ovarian cancer. I know I can't stay on PD forever.
How lucky we are to have this forum with so many views and ideas to help us make up our minds!

[Jie]

Here is a link about skin cancer:
http://at-risc.org/TransplantPatients.aspx

Here are some quotes in case one does not want to open the link:

"The immunosuppressive medications necessary for the survival of your transplanted organ also increase your risk of skin cancer. 
 
While there may be a lag time of five to seven years after transplant surgery before skin cancers begin to develop, this period will vary for each organ recipient depending on individual risk factors. For example, if you are older when you receive your transplant, skin cancers may develop earlier. In addition, the longer you take immunosuppressant medication and the higher the dose, the greater your risk of skin cancer. "

"Squamous cell carcinoma is 65 times more common in transplant recipients than in non-transplant patients
Kidney transplant patients are nearly four times more likely to develop melanoma.
In Australia after fourth post-transplant year, 25 percent of heart transplant patients actually die from skin cancer."

I think it is important to understand what is the risk. The minimum way to define the cancer risk is that the risk per year is constant and independent over time. In such a case, the total risk within 20 years is 20 times as high as one year and 2 times as high as 10 years.  In the real world, the skin cancer may depend on cumulative exposing to the sun.  That is, the risk per year may increase over time, so the total risk within 20 years are more than 20 times as the risk in one year.

Now come back to common sense issues. I think some common sense is needed sometime. When I had my first child, the doctor suggested to have the baby to sleep face down. This was about a standard recommendation at that time. My commom sense told me at that time that this was a bad suggestion. Facedown sleep could block baby breathing.  After about 10 or 15 years and many babies died without any reason, this suggestion was stopped.

As a suggestion for dialysis for a few year before transplant for patients who want to live more than 20 years and who fear of cancers, the objective is to minimize cancer risk.  As I stated in my post, the risk of dialysis is higher than transplant cancer risk. However, different patients weight different risks differently.  This is really a personal decision based on the weighting of different risks.

I used to argue in the other forum that there is an optimal point for preemptive transplant. If one can do the transplant close to the optimal point, preemptive transplant may be the best. But the optimal point is not easy to find. Do you do transplant at 15% GFR or 10% GFR? Some patients can live well with 9 or 10% GFR, or some patients can hold off dialysis for a few years with a GFR of 15%. With the improvement of medicines, shortterm survival of kidneys have improved a lot, but the longterm survival rates do not improve that much. A too early preemptive transplant may be a bad decision for some patients.



 
 

[RainingRoses]

Just wanted to add that two of the transplant surgeons at Piedmont in Atlanta told me that a poorly matched live kidney is FAR better than a perfectly matched cadaverous kidney.

Pete

[cariad]

Here is a link about skin cancer:
http://at-risc.org/TransplantPatients.aspx

"....In Australia after fourth post-transplant year, 25 percent of heart transplant patients actually die from skin cancer."

I think it is important to understand what is the risk. The minimum way to define the cancer risk is that the risk per year is constant and independent over time. In such a case, the total risk within 20 years is 20 times as high as one year and 2 times as high as 10 years.  In the real world, the skin cancer may depend on cumulative exposing to the sun.  That is, the risk per year may increase over time, so the total risk within 20 years are more than 20 times as the risk in one year.

  Well, I certainly do not follow nor agree with your math. Sorry, but constant and independent means just that and would remain at the baseline of 4x as likely than non-transplant patients. And while I agree that sun exposure has a cumulative effect (I think that has more or less been proved) this is true of the entire population, and therefore, we are back to the risk being constant when compared to the general population. This is not indicating that immunosuppressants have a cumulative effect, only sun and age. These stats do not take lifestyle into account, nor family history, nor other confounding factors.

I would never compare heart recipients to kidney recipients, so that last stat from the article is meaningless to me. The fact that 25% of those heart transplant patients die from skin cancer does rather go to my point that if I were going to contract skin cancer from immunosuppressants, it would have happened by now, and I think that is true of most long term transplant recipients. If I understand the math that you are employing, I would need to multiply the squamous cell cancer rate of 65% more likely than the general population by 34.5, or I have a 2242.5% greater likelihood of cancer than non-transplant patients. I don't buy that.

I am returning to this now since my mother phoned during my first response attempt. I don't see why you chose a 1% increase per year. That is just sheer speculation. Even if these risks were that linear (they're not, there's no way) why not say 5% more likely per year, or 50%? This is my life and possible death we are idly discussing, so I only want to deal in factual numbers and percentages, not assumptions and guesses.

I have been thinking about the heart transplant patients, since 25% deceased at four years is a whopping big percentage. I seem to remember Richard saying that there are only 20 million people or so in Australia (I would love it if an Australian would correct me if I'm wrong) and that their list numbers are tiny compared to the US. Heart transplants are relatively new (compared to kidney anyhow) and back when I was on a transplant listserv, there was one 16 year post-heart transplant patient who constantly referred to herself as a 'dinosaur' in that universe. (She was American.) I have to think that Australia performs only a minute number of transplants per year. Small sample=data that cannot be responsibly used to generalize. I don't know how many heart transplants they perform, so it makes a huge difference whether we are talking about 10 per year or 100 per year. The site you linked to is not a peer-reviewed journal article, but rather a site written as a skin cancer primer, so they are not really analysing these numbers in depth. I can almost guarantee that in terms of skin cancer, were we to graph the occurrences in post-transplant patients, we would see a slow increase for the first however many years, a peak at some point, and then a fairly sharp drop-off. I have no data on this, this is only a guess as this seems to be the case with so many medical risks.

I wholeheartedly agree with you that common sense is extremely worthwhile, which is why I am using my common sense to see that my lifestyle choices combined with genes that are not predisposed to skin cancer have seen me this far and will continue to get me through the future. I also am happy to learn of recent, exciting treatments for skin cancer as I know what a concern it is for many transplant recipients.

Of course there is such a thing as too-early for preemptive transplants, which is why when I was encouraged to get a transplant with a GFR still in the 20s I declined. There was absolutely no way that I was going to go on dialysis if I could avoid it, though, because in my case, I suspected I would deteriorate rapidly, as I did the first time. Absolutely every doctor who knew me desperately wanted me to get a preemptive transplant, including, I believe, my surgeon. When I told him I did not mind waiting years to be included in his trial, he found a way to perform the transplant inside of 10 months. Preemptive transplants are more successful according to statistics, but of course individuals have circumstances that will translate to not fitting the statistics properly.

There is undoubtedly increased risk for transplant recipients and cancer, which is what I've been saying since the beginning of this particular discussion.

Nat, those words do indeed rhyme here, although I have to admit I always thought lucre was pronounced 'lukra'. I love the word spruiker! Thanks for clarifying.

[BrandyChloe]

BrandyChloe, I would want to report that doctor. He gave you factually incorrect medical information because he wished to have you follow his agenda. I find that unconscionable and am glad you followed your own path.

Totally agree with this. I was aghast when I read that!!! While the technology of transplantation has improved a lot over time, a live donation is ALWAYS preferred due to the fact you can plan it, and take the organ in a controlled way, and the organ/donor body won't be under duress or have any other problems with it - it is the best possible situation to be in.

At the time, I was devastated, but after I calmed down and thought about it, I realized his experience with live kidney donation was not a good one since his best friend and his best friend's mother had a negative experience. He was just sharing that with me. I heard some horror stories of PD cath placements not being done correctly. I never had a problem with the cath he put in me and learned later from my dialysis clinic, that he has the best repuation in Jax for cath placements. So all in all, it didn't turn out badly. 

[BrandyChloe]

Yes I was fully informed of the cancer risks and every other side effect of the anti-rejection drugs by Mayo in Phoenix before the transplant and when they asked me if I was still ready to proceed I said I've never been so ready for anything in my life.

I had my transplant at Mayo Jax and agree, they tell you every possible thing and side effect you could have with the anti-rejection meds and the transplant. After a while, I wondered if they were going to tell me anything positive! But I understand they don't want anyone to come back and say "you didn't tell me that" and my transplant experience with them was great.

[RichardMEL]

Cariad, yep we're around the 20mil population. No wait, according to wikipedia it's 22 million (http://en.wikipedia.org/wiki/Demographics_of_Australia). Last year, we had 59 heart transplants(!)
(source http://www.anzdata.org.au/anzod/v1/TransplantsByYear.html) and 82 in 2008. Kidneys 770 in 2009 vs. 813 in 2008. So far in 2010 we're at 32 hearts(if I read this correctly) & 273 kidneys(this obviously includes live donations) - 446 were cadaveric donations. So yeah, it is VERY SMALL numbers.



Note the current oz waiting list is 84 for hearts and 1282 for kidneys....

So from that you can extract that it is likely you'd wait less than a year for a heart here, but 4 or so years for a kidney.

[Jie]

Cariad,

All numbers, 65 times, 4 times and 25%, are from publications with detailed citations in that website. So it is not difficult to check the sample size through reading the original papers if interested. The papers are quite old, and there should be some new publications on it. 

As to the total risk of cancers, it will help you understand better if you realize the definition of total risk involves the unit of time. Just think this way, is total risk of getting a cancer the same within one day and within 20 years for a transplant patient? If your answer is no, then you get my idea. If your answer is yes, then need sometime to study the risks. Whether the risk of cancers per year increases or not, the website put out by the professionals said yes.  You can find some evidences to argue against this view. I have not found any evidences in your posts to oppose this view.

Regardless the amounts of risks, the most important thing is how one to weight different risks. Personally, I would go for transplant at the time close to starting dialysis, if possible.  I know some patients who weight the transplant and post-transplant risks very high and do not want to have a transplant. There are not any right or wrong decisions here since no one knows her or his real risk until she or he did the transplant. We know only the risks for a patient population, not a given individual.

[cariad]

Cariad,

All numbers, 65 times, 4 times and 25%, are from publications with detailed citations in that website. So it is not difficult to check the sample size through reading the original papers if interested. The papers are quite old, and there should be some new publications on it. 

As to the total risk of cancers, it will help you understand better if you realize the definition of total risk involves the unit of time. Just think this way, is total risk of getting a cancer the same within one day and within 20 years for a transplant patient? If your answer is no, then you get my idea. If your answer is yes, then need sometime to study the risks. Whether the risk of cancers per year increases or not, the website put out by the professionals said yes.  You can find some evidences to argue against this view. I have not found any evidences in your posts to oppose this view.

Regardless the amounts of risks, the most important thing is how one to weight different risks. Personally, I would go for transplant at the time close to starting dialysis, if possible.  I know some patients who weight the transplant and post-transplant risks very high and do not want to have a transplant. There are not any right or wrong decisions here since no one knows her or his real risk until she or he did the transplant. We know only the risks for a patient population, not a given individual.

My point was that I did not follow your math, not that of the website. My further point is, without examining how this data was collected and analysed, we don't have to blindly trust it. The world is littered with statistics based on bad data collected by lazy and/or irresponsible researchers. I like to view the studies for myself. I did not see the citations on the page that you linked, but will try to find time to look them over when I have a chance, which will not be for quite some time I imagine.

You chose to state as fact that the minimum risk is a straight line where x=y if x is the number of years and y is the additional risk. What on earth makes you think that this is the minimum risk? I ask, if we're going to make up statistics, why not say x=1/10y + 5? Do you see how it would take 50 years using this equation I pulled out of the air for the risk to even double that of year zero? I stated I thought it was closer to an inverted parabola, when you look at risk over time for use of immunosuppresants. In order to isolate the risk of the drugs, we most adjust for other factors such as age. The risk over twenty years for a transplant is more because the risk for older people is always more than for younger, in general. But we are looking at extra risk, because only the extra risk can be of concern to a potential transplant patient. My risk is nowhere near what it was when I had my first transplant because I was a kid, but that says nothing of the additional risks I face due to long term immunosuppresant use. By the same token, your additional risk will fall after transplant if, like most people, your drug doses are significantly reduced over time. These stats tell us nothing about what drugs these patients were on, what doses, how old they were, what their sunblock history was like, family history, nothing. We are not the only patient population on these drugs, either. Individuals with autoimmune diseases take them, asthmatics sometimes still have to take prednisone for a lifetime. Cancer patients sometimes take them! There are risks every where, for everyone.

I am not presenting evidence, so I am not surprised you found none. I am arguing against using speculative mathematics that have the potential to scare people who may not be as versed in these issues as we old timers. If I sound exasperated, it is because I am. We seem to be talking across each other now. I don't appreciate being told that I either agree with you or I need to study more. What exactly are your credentials to make such a statement to me? Your example misses the point entirely.

Yes, finally, I agree with you and I have said many times across this site that stats only apply to populations. In fact, they only apply to large populations, so looking at, say, 50 heart transplant recipients in Australia and saying 12 of them died of skin cancer by year four is not giving us any information at all. (Thanks for the demographic data, Richard!) That site is trying to scare people into using sun block, which I am all for, but I fear that it is now scaring people who are considering a transplant, which I do not support at all. We seem to both agree that every individual needs to make the choice that works best for them.

[Jie]

Hi Cariad,

I guess you still do not understand the total risk has a time unit. When you assume the risk PER YEAR is constant, then total risk within N years will increase linearly over time due to time increases. As I said, this is a minmum assumption. After you do not have confusion with relative risk and absolute risk and confusion with the risk PER YEAR and total risk within a given period, you will understand what I said.

I just did a quick google with "kidney transplant and cancer", a lot of information shows up. Here are three links:
http://www.medicalnewstoday.com/articles/187361.php
http://www.sciencedaily.com/releases/2005/09/050926074404.htm
http://www.medscape.com/viewarticle/516342

From these reports, the risk PER YEAR has also increased after transplant; the longer the transplant, the higher risk PER YEAR. The risks of cancers by 20 years of transplant are much higher than I thought:
"27% of patients developed non-skin cancer and 48% of patients developed skin cancer" by one report, and "82% of kidney transplant recipients develop skin cancer 20 years after being transplanted" by another report.

[cariad]

I see you still are deeply confused, Jie. Risk is not a linear function in humans, that is just muddled thinking and you are bordering on offensive with your condescending tone. The risk of dying does not even progress in a linear fashion - there are ages with statistically higher odds of dying than their older counterparts. This discussion has entered into the ridiculous and has become a total waste of time. Believe what you want but I would not enter into the field of scientifically analysing human behaviour and cost/benefit if I were you. All I can hope is that people go with the option that suits them, and that those people who opt for transplant take the precautions that everyone on planet earth is advised to take regarding skin cancer.

"82% of kidney transplant recipients develop skin cancer 20 years after being transplanted" by another report.

I'm sure there is a story behind that one but I don't care to look into it.

You seem desperate to prove yourself right with random quotes. Transplant has worked out fabulously for me and coming into the transplant section spewing quotes and links and advising people to decline a preemptive transplant against all prevailing medical evidence is irresponsible. Most skin cancers are treatable, especially if caught early, so I resent your implication that if one wants to LIVE a long time, that they should spend years on dialysis. Ludicrous. There are more risks to the life of both dialysis and transplant patients than just cancer. If skin cancer appears, treat it. My mother told me that her mother has (dunh dunh dunh) SKIN CANCER!!! Basal cell carcinoma. My grandmother told my mother it was no big deal even before the doctors told her the exact same thing. They removed it, she's fine. Oh, and she's 92. Like I said, live long enough, cancer will appear in everyone. I was told that 80% of men ages 80 and over have prostate cancer. Sorry, men of IHD: let the terror commence....

[Hemodoc]

I see you still are deeply confused, Jie. Risk is not a linear function in humans, that is just muddled thinking and you are bordering on offensive with your condescending tone. The risk of dying does not even progress in a linear fashion - there are ages with statistically higher odds of dying than their older counterparts. This discussion has entered into the ridiculous and has become a total waste of time. Believe what you want but I would not enter into the field of scientifically analysing human behaviour and cost/benefit if I were you. All I can hope is that people go with the option that suits them, and that those people who opt for transplant take the precautions that everyone on planet earth is advised to take regarding skin cancer.

"82% of kidney transplant recipients develop skin cancer 20 years after being transplanted" by another report.

I'm sure there is a story behind that one but I don't care to look into it.

You seem desperate to prove yourself right with random quotes. Transplant has worked out fabulously for me and coming into the transplant section spewing quotes and links and advising people to decline a preemptive transplant against all prevailing medical evidence is irresponsible. Most skin cancers are treatable, especially if caught early, so I resent your implication that if one wants to LIVE a long time, that they should spend years on dialysis. Ludicrous. There are more risks to the life of both dialysis and transplant patients than just cancer. If skin cancer appears, treat it. My mother told me that her mother has (dunh dunh dunh) SKIN CANCER!!! Basal cell carcinoma. My grandmother told my mother it was no big deal even before the doctors told her the exact same thing. They removed it, she's fine. Oh, and she's 92. Like I said, live long enough, cancer will appear in everyone. I was told that 80% of men ages 80 and over have prostate cancer. Sorry, men of IHD: let the terror commence....

The cancer risk with all solid organ transplants is quite real as well as the infection risk which we have not even touched upon.  That being said, for many people, renal transplant is the best solution for their situation.  Nevertheless, you are belittling the risk of skin cancer specifically which is in error.  It is not Basal Cell Carcinomas that are an issue but instead Squamous Cell carcinomas of the skin which are quite common in renal transplant patients and quite deadly in many patients.  Quite simply, they behave differently than in patients with an intact immune system where even in patients with normal immunity, a small percentage metastasize as well.  In renal transplant patients, it is literally a medical emergency when SCCA is suspected as any dermatologist will confirm. 

The risk, benefit and alternative discussion for renal transplant needs to include daily dialysis outcomes that are equal in survival to cadaveric transplant.  I suspect very few patients will hear that in their renal transplant talks.  I understand a couple of folks had very in-depth discussions at the Mayo, but that is the Mayo and not the ordinary centers doing the transplants nor more importantly the local neph who refers his patients to the transplant center.  For some, the outcome will be the choice of daily dialysis and some transplant.  Yet why get upset about the truth of transplant that these things are so.  We all have renal disease on this site and we all must live with the choices we make, no one gets out of renal disease with ESRD without some degree of risk no matter the renal replacement therapy choice.  It is not a matter about what is right and wrong, but instead about knowing and understanding specifically what the risks are and making the best choice possible with that information.  The choices often are not easy to make but to make them we truly have to first understand them.

[edersham]

Cariad,

You are so right on with your comments on this thread. There are a couple of people on here who are so determined to scare the hell out of people that are considering a transplant it is truly amazing. The only other time I have encountered this is the manager of the Fresenius clinic I was treated at. Maybe the three of you should start a new sight called "I love dialysis" because I actually heard the manager use that phrase.

Ed

[Hemodoc]

Cariad,

You are so right on with your comments on this thread. There are a couple of people on here who are so determined to scare the hell out of people that are considering a transplant it is truly amazing. The only other time I have encountered this is the manager of the Fresenius clinic I was treated at. Maybe the three of you should start a new sight called "I love dialysis" because I actually heard the manager use that phrase.

Ed

Dear Ed, no one is trying to scare anyone about renal transplant.  For many it is indeed a life saving renal replacement option.  Nevertheless, there is a culture of worship in the US for renal transplant that completely ignores a simple fact that it is not a cure, it is simply one of several options that all of us with renal disease face.  The simple fact remains that infection and cancer risk are part of the discussion of renal transplant whether people want to know that or not.  Facing the truth of our options is not at all a scare tactic, it is simply the reality that we live with.  People with renal transplants can reject the organ and suffer tremendously from the anti-rejection regimens.   They are also at a higher risk of cancer as already noted and after all is the topic of discussion here.  If people wish to white wash the subject so be it,  but does that serve any useful purpose.  Let's face it, the risk of dying from ESRD is essentially 100% in a very short period of time.  I did have one patient who refused dialysis and she survived way beyond anyone's expectations.  Renal disease itself is the scary animal and we do have many incredible options compared to 50 years ago, but they indeed carry their own set of risks and benefits. 

The difficulty is that renal transplant is almost always universally compared to conventional incenter care in the US.  Japan for instance has survival incenter 2.5 times better than in the US.  The popular media always has a story of donation from family and strangers alike, but no one ever hears of those that did poorly after a renal transplant.  Unfortunately, there are many doing well on dialysis that have adverse outcomes after transplant.  Over all, the majority of renal transplant patients will survive longer and have a better quality of life than patients on dialysis.  I don't believe any one is disputing those facts. However, there are many patients who simply are not a candidate for renal transplant among which is anyone at a high cancer risk.  It is a relative contraindication in many and in some who have already suffered an episode of cancer it may be an absolute contraindication. 

As far as dialysis goes, I would absolutely say I love dialysis but not in the negative connotation that you are implying.  Try a transplant program that does not have any dialysis support and you will find a bunch of dead patients since very few people are able to have a preemptive transplant.  The lifesaver of the majority of renal transplant patients has been and will continue to be the various forms of artificial dialysis modalities.  I despise the manner in which conventional incenter dialysis is practiced in the US, but that is a separate discussion in itself.  At one point or another, every long term renal transplant patient I personally know has had a bridge of life from dialysis either before or after a renal transplant when they eventually fail and another is needed.  Is dialysis fun?  Absolutely not, but I do love the fact that it has given me nearly 4 years of life that I wouldn't have had without it.  Yet I am daily thankful and grateful for people like Dr. Chris Blagg who continues to fight the battle for optimal dialysis 50 years after it became the first life saving treatment available for ESRD.

If someone wants to discuss the risks of long term dialysis, I would be equally forthcoming if anyone was interested in that as well.  It is not a bowl of cherries either but for my circumstances, daily home dialysis is my best option.  Having two prior cancer episodes both of which were completely cured surgically by being caught early, I would add that understanding cancer risk in the arena of renal disease is something that all renal patients should have an understanding of to simply foster lifestyles that reduce that risk in every way.  For myself, the thought of dying from a metastatic melanoma gives me shudders where the thought of a quick sudden death from dialysis doesn't bother me in the least, although I am going to do all I can to avoid that as long as possible. 

Having seen many patients die from both, the latter is much preferred to me even though none of us can predict what will eventually get us.  I had no peace of mind about the renal transplant but because of undo pressure from every part of my medical team, I did complete the entire renal transplant work up which actually in one way saved my life since my early melanoma was found while it was nearly 100% curable after I scheduled a preliminary skin screening as part of this evaluation.  How many patients get a full dermatological screening BEFORE a renal transplant?  The last I checked, it was not part of the evaluation at my transplant center.  Many transplant centers include annual or semiannual skin cancer screening after the fact, but I would be very interested to know how many people that have had transplants were seen by a dermatologist before the procedure.

So Ed, no scare tactics, but I am tired of the biased view that the media and almost all involved in renal transplant gloss over the very real risks in many instances., the MAYO notably excepted.  If you believe misinformation about post transplant skin cancers is admirable, then so be it, it is not likely that I will change your mind.  For those that want to know everything about their choices, then infections and cancer post transplant is part of the discussion as well as the very well documented benefits.  I always advised my patients when they were considering difficult treatment choices to make sure they understood to the best of their ability what risks were entailed and were willing to accept developing those risks should it happen.  Many people are not willing to accept the increased risk of cancer that does go with renal transplant.  Others hate dialysis so much that they are willing to accept those risks.  That is a personal choice, but who is served by pretending that those risks do not exist?

For Sax-O-Trix who started this thread, all I can say is you are not alone in your concern over the cancer risk.  I was uncomfortable with the cancer risk while I initially considered renal transplant under very high pressure from my medical team and it became unbearable once I developed an early melanoma.  In contradistinction to the entire renal transplant culture here in the US, you actually have other renal replacement options that for some like myself are preferable to transplant.  Dr. Chris Blagg has stated publicly in the past that at his age, he would reject renal transplant as his first choice and instead choose daily home dialysis performed nocturnally should he develop renal failure.  Of all the people in my medical team, I have only met one other person who would likewise choose dialysis at home over transplant.  With evidence of equal survival as cadaveric transplant, it is a viable alternative despite the incredible media bias to the other.  Which ever choice you make, know and understand your options.  If you are unable to do daily dialysis, then the data is clear that you will have a better chance of long term survival with renal transplant than conventional US incenter dialysis if you have the usual cancer risk factors and no contraindications. 

Some people cannot tolerate the discipline needed to do daily dialysis and that puts the decision back to the renal transplant option for many people.  For me with my medical back ground and all the years doing medical procedures, I feel a little bit at home so to say since it has been part of my professional life for so long.  It is a stressor on my wife who assists me but up to this point she has been able to cope well with it and she is good at being my assistant.  My wife is in complete agreement with me over my decision not to go for renal transplant at this time until the time they are able to significantly mitigate the cancer risks.  If I developed access problems or other dialysis related complications, I might reconsider that decision, but at this time my dialysis has been going well and I will continue.  I am certain that I am not the only renal patient who has made a similar choice yet you will NEVER hear their voice in the renal transplant biased media.  I suspect that there may be some people even here on IHD that don't want the bother of having people second guess their choice to not opt for a transplant.  In some ways I am actually grateful for my melanoma since I no longer get nearly 100% of people telling me how stupid I am not to have a transplant. Once again, so be it, but any thinking person that knows what is truly entailed in the transplant option should at least pause for a moment or two before preceding and be willing to accept the consequences either way.  For those that decline a renal transplant and choose daily dialysis, I hope you have thick skin because you will not hear the end of the criticism of your decision.  I would only encourage you to be comfortable with what ever you or any one else chooses to do.  There are risks and benefits no matter which option is chosen.

I continue to wish you the best Sax in what ever you decide to do.

God bless,

[Hemodoc]

Dr Stanley Shaldon just placed a comment over at DSEN on the longest living renal patient in the world.  I think that Dr. Shaldon, the first to use nocturnal dialysis back in 1963 sums it up so well:

Allow me to make a personal comment on the Robin Eady Saga. In 1963, his father came to see me at the Royal Free Hospital as his son had end stage renal failure. We were full and I recommended that he tried to get into Seattle. Scribner took him on temporarily on and then he went to Lionel Mcleod in Canada until we had a place for him at Royal Free Hospital. I persuaded Prof Butterfield to take him on as a medical student at Barts where he qualified in medicine and also married my best dialysis nurse and went on home HD.He received an unrelated cadaver kidney transplant in 1988 after 25 years of dialysis. He qualified in medicine and became a renown dermatologist and is now retired and has several grandchildren. Having known him both as my patient and later as a personal friend, I would characterise this unusual man as having an extremely strong desire to survive and lead as normal a life as possible. His story should be held up as what an individual can achieve with a severe and life threatening handicap if he has a strong enough motivation to live.
Stanley Shaldon

Posted by: Stanley Shaldon. MA.MD.FRCP | July 10, 2010 at 06:28 PM

http://www.billpeckham.com/from_the_sharp_end_of_the/2010/06/dr-robin-eady-to-receive-the-clyde-shields-distinguished-service-award.html?cid=6a00e54fc659eb88340133f2339537970b#comment-6a00e54fc659eb88340133f2339537970b

The will to live and doing what is needed to survive is probably the most important characteristic to consider.  Dr. Eady survived for 25 years before having his transplant back in 1988.  What a testimony to the will to live and thrive.  Perhaps that is the most important component.  Once you have that, all of the many renal replacement options take a second place.

[cariad]

Cariad,

You are so right on with your comments on this thread. There are a couple of people on here who are so determined to scare the hell out of people that are considering a transplant it is truly amazing. The only other time I have encountered this is the manager of the Fresenius clinic I was treated at. Maybe the three of you should start a new sight called "I love dialysis" because I actually heard the manager use that phrase.

Ed

Oh, Ed, I hear you. And thanks for the support. I agree with you that this discussion is taking on more of a "one team against the other" feel that is so unfortunate. We are a better support group than this. 

Peter, I read your first message in which you quoted me, but sorry, your second is absolutely too long for me to wade through. That's not meant as criticism, just personal circumstance. Right now, if I were to ask a risk question it would be "Is having children worth the risk of getting a child who tantrums at least twice a week?" (OK, yes, it is worth it. )

I really challenge anyone to find somewhere where I said that there was no serious risk of skin cancer in transplant patients. You seem to have missed the point of my talking about my grandmother - I had been saying I have zero family history of skin cancer, and now I am correcting myself by saying I have a 92 year old grandmother who was diagnosed with basal cell carcinoma. It was a lighthearted comment, not meant to be used as evidence of anything. The timing of my mother's call and this discussion made me laugh.

My transplant centre went over the risks ad nauseum, and it was not Mayo. I have been hearing about the risk of skin cancer from every random nephrologist since the early 1990s, so I don't agree with you that this is unique to Mayo. Far, far from it. I have had my garish and painfully protracted death foretold by plenty of doctors. Apparently, believing I am healthy and being confident that I can manage with whatever life throws at me is considered a form of arrogance to some doctors, because they have certainly tried to scare me into blindly following their demands. Unsuccessfully, may I add.

The original question from Sax was is a transplant worth the risk of cancer. This is obviously going to boil down to a constellation of personal factors unique to each individual. For me, the answer is ABSOLUTELY. Thirty four years with almost zero problems and little in the way of maintenance requirements? Yes, I would say that beats dialysis. Is the risk of entirely different types of cancer worth it to me to be in a tolerance trial in which I have every reason to believe that I will be off all meds within eight months? Yes, a thousand times, yes. Cadaver donor transplant and dialysis may offer the same success rate, however, Sax has potential live donors, and I had a live donor. People who have had transplants on here and are speaking from personal experience have overwhelmingly stated that the risk was worth it to them. I think this is wonderful news, since I would hate to hear that anyone regretted their choice, no matter which way they decided to go. 

You're right, Peter, there is little reason to get upset about this. If one were to go back and read through this discussion from the beginning, one might note that I brought up skin cancer by repeating what I have been told for almost two decades. It seems to me that the people here know about the risk of skin cancer, so I see no reason to belabour the point.

[Hemodoc]

Cariad,

You are so right on with your comments on this thread. There are a couple of people on here who are so determined to scare the hell out of people that are considering a transplant it is truly amazing. The only other time I have encountered this is the manager of the Fresenius clinic I was treated at. Maybe the three of you should start a new sight called "I love dialysis" because I actually heard the manager use that phrase.

Ed

Oh, Ed, I hear you. And thanks for the support. I agree with you that this discussion is taking on more of a "one team against the other" feel that is so unfortunate. We are a better support group than this. 

Peter, I read your first message in which you quoted me, but sorry, your second is absolutely too long for me to wade through. That's not meant as criticism, just personal circumstance. Right now, if I were to ask a risk question it would be "Is having children worth the risk of getting a child who tantrums at least twice a week?" (OK, yes, it is worth it. )

I really challenge anyone to find somewhere where I said that there was no serious risk of skin cancer in transplant patients. You seem to have missed the point of my talking about my grandmother - I had been saying I have zero family history of skin cancer, and now I am correcting myself by saying I have a 92 year old grandmother who was diagnosed with basal cell carcinoma. It was a lighthearted comment, not meant to be used as evidence of anything. The timing of my mother's call and this discussion made me laugh.

My transplant centre went over the risks ad nauseum, and it was not Mayo. I have been hearing about the risk of skin cancer from every random nephrologist since the early 1990s, so I don't agree with you that this is unique to Mayo. Far, far from it. I have had my garish and painfully protracted death foretold by plenty of doctors. Apparently, believing I am healthy and being confident that I can manage with whatever life throws at me is considered a form of arrogance to some doctors, because they have certainly tried to scare me into blindly following their demands. Unsuccessfully, may I add.

The original question from Sax was is a transplant worth the risk of cancer. This is obviously going to boil down to a constellation of personal factors unique to each individual. For me, the answer is ABSOLUTELY. Thirty four years with almost zero problems and little in the way of maintenance requirements? Yes, I would say that beats dialysis. Is the risk of entirely different types of cancer worth it to me to be in a tolerance trial in which I have every reason to believe that I will be off all meds within eight months? Yes, a thousand times, yes. Cadaver donor transplant and dialysis may offer the same success rate, however, Sax has potential live donors, and I had a live donor. People who have had transplants on here and are speaking from personal experience have overwhelmingly stated that the risk was worth it to them. I think this is wonderful news, since I would hate to hear that anyone regretted their choice, no matter which way they decided to go. 

You're right, Peter, there is little reason to get upset about this. If one were to go back and read through this discussion from the beginning, one might note that I brought up skin cancer by repeating what I have been told for almost two decades. It seems to me that the people here know about the risk of skin cancer, so I see no reason to belabour the point.

Dear Cariad, you are one of the fortunate survivors and you have really hit the nail on the head with the tolerance issues.  If they are ever actually able to accomplish that task, then you would be able to drop the immunosuppressants which are the major factor in the side effects of renal transplant.  If they are able to do that then renal transplant begins to jump into the cure category instead of the treatment option category.  They have no easy task before them.  And yes, it is a personal choice for all to consider.

[edersham]

   Dear Hemodoc,

Most of your comments reflect your opinion and experiences and I have no problem with that . I have said many times that everyone has to make the choices that are best for them. But I do have a problem with your comment that those who can't tolerate dialysis lack the "discipline required".  I find that comment uninformed and unprofessional.

Ed

[Henry P Snicklesnorter]

.