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

[Hemodoc]

   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

Dear Ed, you mistake my point which was to do daily dialysis at home requires a mindset and the discipline to do that.  Some people and some partners don't share that type of discipline or perhaps a better word is tolerance of the grind of dialysis.  It is not always easy to do daily dialysis.  In fact, one of the aspects of home dialysis evaluation is whether the candidate possesses that type of discipline and tolerance.  May comments were not in the least uninformed or unprofessional.

[Hemodoc]

   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

Ed,

I find the latter part of your response to Hemodoc to be misleading and your labelling of him as "uninformed and unprofessional" as offensive.
He did not say that "those who can't tolerate dialysis lack the discipline required," as you claim.
Rather, he said that "Some people cannot tolerate the discipline needed to do daily dialysis." - (note the use of the word "some.")  - a proposition with which, I would add, I am in full agreement.
There is more than one carer who posts to IHD, expressing their frustrations with their partners who refuse to follow the required regime in dialysis and whose health suffers accordingly, to their great distress. I am sure  they would have no argument with Hemodoc's statement either.

Henry

Thank you Henry for your comment.  To some, for some reason, the truth is simply offensive.  Not much I can do about that.

[edersham]

I stand by everything I said and the last two posts just prove my point. Im done with this thread. There is plenty of intelligent discussion to read and respond to on ihd.

Ed

[RichardMEL]

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.

I agree with this comment in general. My only real comment to add is that you suggest the risks needs to be taken into account when matched against those doing daily dialysis of some form or another. Or rather you say the thsee folks need to be included in the stats - absolutely - unfortunately daily dialysis(you mention home dialysis in another response, so I presume this is what you generally mean, eg: NxStage or similar). Not everyone has access to daily Dialysis. I know if I could, I'd be all over that, but it's simply not an option for me. I can not dialyize at home, and my unit does not offer nocturnal in-centre dialysis (in fact I do not think anyone in my city offers it, though I could be corrected on that). There have been rumblings that one of the senior docs here, soon to take over the top job, wants to introduce it, but I think the unit staff are kind of against that idea(for obvious reasons). If I could I'd jump on board to do nightly nocturnal!

I think you make the point well that not only are outcomes going to vary by individual based on their choices, but choices will be based very much on individual needs and circumstance.

The bottom line, which I think everyone here agrees on, is that whichever way you go, there are risks. Doing your own "cost/benefit analysis" will yield a different result for each individual weighing up potential pros and cons of each treatment option.

I am the sort of person that is happy to adhere to protocols required to make the most of a transplant outcome... for me, the "cost" of covering up/staying out of the sun and being careful to avoid infection and the like is worth the freedom allowed by a transplant (and yes, i can drink the 2L+ a day of water!). For others, staying on dialysis may provide a better outcome. Eveeryone's different, and our decisions should be respected if made with a proper amount of information and understanding to back them up. I think it would be foolish to choose either way without understanding all the choices and implications of those choices. In this regard, this very thread is helping untold numbers of readers make their own decisions.

[Hemodoc]

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.

I agree with this comment in general. My only real comment to add is that you suggest the risks needs to be taken into account when matched against those doing daily dialysis of some form or another. Or rather you say the thsee folks need to be included in the stats - absolutely - unfortunately daily dialysis(you mention home dialysis in another response, so I presume this is what you generally mean, eg: NxStage or similar). Not everyone has access to daily Dialysis. I know if I could, I'd be all over that, but it's simply not an option for me. I can not dialyize at home, and my unit does not offer nocturnal in-centre dialysis (in fact I do not think anyone in my city offers it, though I could be corrected on that). There have been rumblings that one of the senior docs here, soon to take over the top job, wants to introduce it, but I think the unit staff are kind of against that idea(for obvious reasons). If I could I'd jump on board to do nightly nocturnal!

I think you make the point well that not only are outcomes going to vary by individual based on their choices, but choices will be based very much on individual needs and circumstance.

The bottom line, which I think everyone here agrees on, is that whichever way you go, there are risks. Doing your own "cost/benefit analysis" will yield a different result for each individual weighing up potential pros and cons of each treatment option.

I am the sort of person that is happy to adhere to protocols required to make the most of a transplant outcome... for me, the "cost" of covering up/staying out of the sun and being careful to avoid infection and the like is worth the freedom allowed by a transplant (and yes, i can drink the 2L+ a day of water!). For others, staying on dialysis may provide a better outcome. Eveeryone's different, and our decisions should be respected if made with a proper amount of information and understanding to back them up. I think it would be foolish to choose either way without understanding all the choices and implications of those choices. In this regard, this very thread is helping untold numbers of readers make their own decisions.

Dear RichardMel, I wish none of us on IHD had any need to know these issues, but sadly we do.  I am thankful that we have enough choices today that we can actually argue about them.  What a concept compared to the folks in the 1950s who had the hope of treatment options but most didn't live long enough to  get the choices we have today.   In that I do love dialysis and all that have seen even one extra day due to a machine should be eternally grateful for the contributions of men such as Dr. Scribner for instance.  Renal transplant in the right patient is often the best option and I wish you the best in transitioning to becoming a urinator once again.  It is quite sad that optimal dialysis is not universally available.  That is the mission of DSEN to make the awareness of the daily dialysis option to all who might benefit from this life saving technology which is equal to cadaveric transplant in survival.  You also have the take home message of mitigating any cancer risks by lifestyle choices.

One of the reasons that I wrote the post last year or I guess it was in 2008, was after talking to a fellow dialysis patient while I was incenter who had a son who was going to donate a kidney.  She was a horse lover in the middle of the Mojave desert and even though she had already been seen and approved at the University program, she was completely clueless on how dangerous the sun would be to her after her transplant.  Perhaps she simply didn't want to know and didn't listen when she was told, but she was quite shocked to hear how deadly the sun could be after transplant.  I have spoken to several patients in various stages of the transplant evaluation and none to date understand this risk.  I believe it is much better to enter into a treatment option with eyes wide open so that you maximize the benefits and minimize the risks.

Once again, RichardMel, I wish you the best.

God bless,

[paris]

Not to be a party-pooper here, but...   I am having serious second thoughts about getting a transplant, I guess I am just plain scared silly.  After reading the stats on the rate of cancer for all types of transplants and a comment from my GP about "what I am getting myself into", I am wondering if PD wouldn't be a better option.  The rate of survival is really low for cancer patients on immuno drugs and the chances getting cancer are at least 2.6 times the average.  I guess a certain virus (Barr?) causes many of the cancers seen in post-transplant patients and you can be teested to see if you have the anti-bodies.  If you already have the anti-bodies going into the transplant, your chances are lower of actually getting certain types of cancers from what I have read.  I think I may request the blood test.
It seems that people can survive for many years on dialysis and if you don't end up with an infection, PD seems like an acceptable alternative (but then again, I am not there yet so I don't know squat about the daily grind of PD or HD.)
Any words of wisdom?

Thought I would repost the orginal question. We may have lots Sax during the lengthy posts about who may have the absolute answer regarding cancer and transplants.  Richard, you are so right---following simple suggestions can help. Thank you for encouraging Sax.

[bojenkins]

I agree with what many other people have already said in this thread. At the end of the day, it comes down to a personal preference. You should choose the treatment option that best fits your life. I believe that it all comes down to a personal decision on your part. You can ask others for advice, but you need to choose your treatment based on your own circumstances.

I have been on HD, and I HATED it. I'm on PD now, and while it is better than HD, it still sucks. Am I terrified about getting a transplant? Of course. But that's not going to stop me. I can't imagine being on dialysis for the rest of my life. But maybe that's because I'm only 16.

The most important thing, at least in my opinion, is to be true to your own interests. What is the best thing for you?

[MooseMom]

I have known for a long time about the increase of skin cancer risk post-transplant, so imagine my surprise when this was not even discussed at my pre-transplant evaluation.  I have wondered for months why a visit to the dermatologist was not part of the pre-transplant protocol.  They made me get my gallbladder taken out, but they never once checked my skin or had me visit a specialist (but I had to see a dentist???).  Seems to me that if you are worried about skin cancer post transplant, then make an appt with a dermatologist and then see him/her regularly.  I am hoping that other transplant units are better than mine is at reviewing all of the risks of transplantation.  I've done my own research, but not everyone has internet access or is well enough to do the research.  I'm not on dialysis yet, but I've had to change my lifestyle in many ways already, and I am prepared to do what it takes to get a transplant and to protect myself in any way I can from infection or any other risks that go with it.  That's my choice.  I've worked hard to keep myself as healthy as possible, and I will continue to do so, but not everyone can do the same.

This discussion reminds me a bit of the "mommy wars" in that we all make our decisions in the best way that we know how, but we don't like to have to defend those decisions because that can lead to second guessing, which can psychologically undermine us at a time when we need to feel confident about our choices.  We need to remember that while discussion is healthy and necessary, we must also respect the choices that our members make for themselves and to do our best to support them.

My neph came right out and told me that NxStage required commitment and determination, but if you can do it, then NxStage gives good clinical results, which is just what I want.  I can do this...I know I can....but again, not everyone can.  So, I will start out on NxStage but continue to hope for the cahnce for a transplant.

[MooseMom]

The most important thing, at least in my opinion, is to be true to your own interests. What is the best thing for you?

But it can be really difficult to ascertain what the best thing is.  Based on your pre-dialysis research, you think, "OK, this is what I want to do...this is what will be the best thing for me.", but what if that turns out NOT to be the best thing for you?  What if my DH decides he can't cope with helping me with NxStage?  I am a much more disciplined person than he is...what if, despite his very best intentions and after a finite period of time, he just can't hack it?  You know what they say about best-laid plans... 

[cariad]

The most important thing, at least in my opinion, is to be true to your own interests. What is the best thing for you?

But it can be really difficult to ascertain what the best thing is.  Based on your pre-dialysis research, you think, "OK, this is what I want to do...this is what will be the best thing for me.", but what if that turns out NOT to be the best thing for you?  What if my DH decides he can't cope with helping me with NxStage?  I am a much more disciplined person than he is...what if, despite his very best intentions and after a finite period of time, he just can't hack it?  You know what they say about best-laid plans...

I think Bo is echoing what most of us have said and agreed upon. MM, if your husband starts to waver in his commitment, after you two are all trained up, you could basically do it all on your own. Yes, even self-cannulation! (*horror movie scream*) And I know you would do what needs to be done if that scenario arose. Really, it seems the NXstage partner is most crucial in emergency situations, which hopefully will not crop up in your case. A wonderful IHD member who used to post on here all the time was her husband's partner, and she used to swim while he was on the machine - she just carried a radio out with her so that he could communicate with her in the event of a problem. We have at least two members (Meinuk and Bill Peckham) who do/did NxStage without a partner.

Aside from that, if it's the wrong choice for you, try a different option. Perhaps you'll find that you would prefer in-centre nocturnal because you want to sequester dialysis in a place outside your home. I think most people (you included) have a good sense of what will work for them not only medically, but also psychologically and logistically.

Bo, you are such a well-spoken 16-year-old. I think there is little doubt that transplant is the best option for someone so young. Now you have some idea of the risks with the medications, and hopefully you will always remember your sunblock. I am so fanatical about sunblock and telling my kids about the dangers of overexposure to the sun that my 7-year-old came home in tears a few weeks ago. He had got his first-ever sunburn. It did not hurt so much, he just had really taken my warnings to heart - I tell them both that sunblock is necessary because they could get really sick in later life if they are not careful now. I think he thought he was facing certain death over this one mistake. I had to do a lot of clarifying, and it was heartbreaking to see how terrified he was.

I have known for a long time about the increase of skin cancer risk post-transplant, so imagine my surprise when this was not even discussed at my pre-transplant evaluation.  I have wondered for months why a visit to the dermatologist was not part of the pre-transplant protocol.  They made me get my gallbladder taken out, but they never once checked my skin or had me visit a specialist

Interesting observation. I was not sent to a dermatologist for any eval, but this probably has to do with the fact that skin cancer is more a post-transplant concern than a pre-transplant concern. Oh, but wait, I was post-transplant, so you'd think they would have checked even more? Hmmm, perhaps I'll ask them next time why this was not part of their eval. Doctors tend to assume I already know everything when it comes to transplant, so I am not surprised that risks of long term immunosuppresants were not mentioned to me. I also think that you would have been sent to a dermatologist if you had mentioned a family history of skin cancer. They did ask for a thorough family history, right?  I (stupidly) admitted to having a relative who died of colon cancer, so it was off to the colonoscopy I went. (The surgeon tried to make me feel better about it by saying 'I sent myself to one when I was only 41, so I'm not trying to make you do tests that I won't undergo myself.' I was so annoyed at the pre-transplant paranoia that I walked into every cancer test saying 'I don't have this cancer, but they're making me do this, so here I am!' Guess I should stop tempting fate.... but where's the fun in that? )

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.

Thanks for the comments, Peter. Harvard has of course accomplished this already in a limited number of patients (4 out of 5 are living med-free without rejection) and you may remember the TIME magazine article from January 2007 on that study, which I believe began in 2002. Stanford has also accomplished it for several patients. According to my surgeon, he presented my case at a recent transplant conference, and he said "yours is the one that will make them fall off their chairs - a re-transplant with an unrelated donor". I was looked over by many dermatologists after the transplant, but that was to detect GVHD, not skin cancer. Let's hope that if they had seen something suspicious outside the realm of GVHD, they would have let me know.

I am so excited by this trial that I want to tell the world about my experience, but of course, not everyone can participate in one of these trials and not everyone has the option of transplant, so I worry about fostering jealousy or coming off like I am bragging. I have certainly done my time on the meds, though. More and more centres are doing these trials and I do hope that if someone is interested, they will look into it. The risks are pretty scary, but I promised the surgeon that I have a really high risk tolerance and I am trying to live up to that claim.

[Jie]

Cariad,

I am not sure why you are so offensive with my citations of scientific study results. A quote from a scientific study would give a better support than just arguing with personal opinions. It is not difficult to accept that the cancer risk per year increases over time after transplant, as supported by many studies. As to the linear increase of total cancer risk within a given period as a function of time, a simple example can illustrate it: suppose 1% risk for the first year, 1.05% for the second year, with 1000 patients, there will be about 10 patients with cancer during the first year, and another 10.5 patients with cancers during the second year. Total risk during these two years is (10+10.5)/1000=2.05%. One can work this math forward to 20 years, and relative risks within 20 years are more than 20 times of the risk within the first year. You can see why I said you were confused with risk per year and total risk within a given period. You forgot that when one increases the time, the total risk increases even with a constant risk per year.  It is good for you that you do not have cancer. But one patient does not mean anything. I personally know several transplant patients within 6 years of transplant, and none of them have cancers. But I also know some transplant patients 15 or 20 years after transplants and some of them are struggled with skin cancers. My personal observations are basically the same as reported by these scientific studies I cited.

I do not want to scare anyone about transplant. As I stated repeatedly that transplant is my first choice. Whether to have a transplant depends on the patient's risk weighting. Even the cancer risk is much higher than I thought from a simple google search, my weighting of cancer risk is lower than other dialysis risks. The biggest reasons are quality of life with transplant and that I consider any years in my future life after 20 years is a bonus.   

[MooseMom]

Cariad, I've had the "luxury" of knowing for quite a long time that I'd be facing dialysis one day, so I think my choice is more informed than many people's.  I intend to learn to self-cannulate since I don't have a particular horror of needles.  I refuse to do PD because I refuse to give up swimming.  That may be a silly reason to discount a certain modality entirely, but I've given up too much already!  I understand that NxStage can be done very successfully with minimal help and that a partner is valuable mostly in emergency situations, so I personally will be able to just get on with it if DH wimps out.  But other people may need more help than I will.

Believe it or not, no, the transplant team did not ask about a family history of skin cancer.  Both of my parents had it (the curable kind), but then again, both of my parents lived their entire lives in the South and had never once used sun screen.  I lived a long time in England where the sun does not shine ( ), and once I returned to the US and was put on cyclosporine, I use sun screen religiously, so my risk is, hopefully, lowered.

I'm sure you know that I am so thrilled about your clinical trial, and I am grateful that you chose that particular path.  You've done all of us a great service, and you are right in saying that few of us could have/would have made the same choice for ourselves.  Far from bragging, your posts about your experience are testaments to your generous spirit, and I thank you so much!

[Sunny]

I am aware of cancer risks regarding immunosuppressive drugs.
I am fifty, so I am perfectly willing to take the long-term risks. However, the major factor in my decision making to try for a transplant was in the way my kidney disease has effected my family.I have lived with stage 4 kidney disease for nine years now and in that time I have seen how this disease has affected everyone in my family, even though I have tried my best to do otherwise. Plus, it gets harder the sicker I become. My two children, now 19 and 21 years old have spent more than 1/2 their lives living with my kidney disease and I see how it affects them. My husband of 21 years, whom I've loved for 30 years, has experienced our lives change for the worse because of this disease.I would never dream of expecting him to stay home everyday to partner with me in NxStage, though I know he would. I cannot imagine also putting my family through years of me being on dialysis when I know what they would like so much for me is to have the freedom a kidney transplant could provide for us all. I would once again be able to go on long hikes, trips, and vacations. I would once again be able to stand in the kitchen and make their favorite meals ,take my daughter shopping for hours on end, go to car shows with my husband and son. Travel every summer. I will take the risk of cancer because the way I see it, dialysis has it's own separate kinds of risks, yet a transplant will at least allow more freedom. I also have 2nd thoughts about a transplant. Ultimately, I will get through my fears and I will do it for my family. But then again, you're listening to someone who has already survived Goodpasture's Disease. After that, cancer sounds survivable to me anyway.

[MooseMom]

Sunny, you raise a very good point, one that I have discussed with my husband.  We have to remember that our decisions affect those that love us and live with us.  I have repeatedly asked my husband if he was sure he wanted to do NxStage with me.  At first, I had decided that I'd do in-center because I wanted to spare him the hassle.  But the more we discussed it, I realized that up to now, he has felt so helpless.  All he has been able to do is to listen to me rant and rave about the unfairness of it all.  While his emotional support has been invaluable, he is an action man; he does not feel like he is truly contributing to my welfare unless he is ACTIVELY doing something, and for him, that something is helping me with NxStage.  This chance to DO something tangible is important to him, so I had to realize that my heroic intention of going it alone was rather selfish. 

Your thoughts about how your family will benefit from transplant are valuable and worth remembering.  Thanks for this point of view.  Our choices are not made in a vacuum.

[cariad]

Cariad,

I am not sure why you are so offensive with my citations of scientific study results. A quote from a scientific study would give a better support than just arguing with personal opinions. It is not difficult to accept that the cancer risk per year increases over time after transplant, as supported by many studies. As to the linear increase of total cancer risk within a given period as a function of time, a simple example can illustrate it: suppose 1% risk for the first year, 1.05% for the second year, with 1000 patients, there will be about 10 patients with cancer during the first year, and another 10.5 patients with cancers during the second year. Total risk during these two years is (10+10.5)/1000=2.05%. One can work this math forward to 20 years, and relative risks within 20 years are more than 20 times of the risk within the first year. You can see why I said you were confused with risk per year and total risk within a given period. You forgot that when one increases the time, the total risk increases even with a constant risk per year.  It is good for you that you do not have cancer. But one patient does not mean anything. I personally know several transplant patients within 6 years of transplant, and none of them have cancers. But I also know some transplant patients 15 or 20 years after transplants and some of them are struggled with skin cancers. My personal observations are basically the same as reported by these scientific studies I cited.

I do not want to scare anyone about transplant. As I stated repeatedly that transplant is my first choice. Whether to have a transplant depends on the patient's risk weighting. Even the cancer risk is much higher than I thought from a simple google search, my weighting of cancer risk is lower than other dialysis risks. The biggest reasons are quality of life with transplant and that I consider any years in my future life after 20 years is a bonus.

You know what, forget it.These examples are silly and I don't wish to continue fueling it. This ScienceDaily summary only deals with melanoma. 3.6 times a really low percentage is still a really low percentage. The incidence of melanoma is approximately 60,000 per year in the US, or .02% of the population. This includes everyone, immunosuppresed or not. Even if we just separate out the transplant recipients and multiply the risk by 3.6 overall, we have a .072% chance of contracting melanoma on average. Talking about risk increasing over time, my baseline risk will be very different to a white, male, 60+ New Zealander who takes no sun precautions. Your numbers make no sense since you continue to look at the full 1000 while not accounting for the fact that new incidences of melanoma may strike the same person twice, or many times. The article you posted acknowledges how difficult it is to talk about statistics and risk with such rare events.

The ScienceDaily article goes on to state that women do not see an increase in risk with age, and their risk is "significantly lower" than that of men, especially caucasian men. This risk is just a rough average - you must take your own situation into account if you really want to stop needlessly scaring yourself. Jie, I don't know your race nor your age, I do know you are male but that you also reside in Alaska. (My mother's native land....) You also are aware of the risks and can take precautionary measures. I would say your risk is pretty darn low.

Here is a pretty good article that broadly discusses skin cancer risks across all solid-organ transplants, and it acknowledges that heart transplant patients are at far greater risk than kidney transplant patients (their guess it's down to greater immunosuppression and higher age at time of transplant.) This is an actual scientific review article, not a summary written by a layperson. http://dermatology.cdlib.org/DOJvol8num2/reviews/squamous/wu.html

It supports what Hemodoc was saying about greater risk of squamous cell carcinoma (SCC in the article) than melanoma, which was actually news to me. Further, it supports both Hemodoc's and MooseMom's observations that recipients are not receiving proper dermatology screening and education, though almost half showed no interest in screening for skin cancer! It discusses greater risk depending on location of the recipient, so I am now a bit more worried about our Australian members, as this was used as an example of a high-risk area. It also discusses advances in treating and preventing cancer, including using tretinoin, a new and very popular anti-aging cream. I am going to see if I can get this cream on insurance. Why not? It does seem to lower the risk of certain lesions that correlate with increased risk of skin cancer.

Since we are talking about living longer, skin cancer or not, let's look at their conclusions on mortality:

SCCs in transplant patients are much more aggressive and deadly.[78,79] They tend to recur locally even after surgical excision.[80] Cancer that spread to lymph nodes occurred in 5.8% of patients. Seventy-five percent of these were caused by SCC.[69] Of the 5.1% of transplant patients who die from skin cancer, 60% had SCC and 33% had melanoma,[69] which represents a 10-fold increase in mortality from SCC.[81] This is in stark contrast to the mortality of skin cancer in the general population, where melanoma is the most common cause of death.

Only 5.1% of transplant patients die from skin cancer. If this is true, I think this is pretty good news. Turn it around and you could say you have a nearly 95% chance of NOT dying from skin cancer as a transplant recipient. Is the risk worth it, as Sax originally asked? To me it certainly is.

[Sax-O-Trix]

Okay...  I now have more information than I did when I originally posted.  This is good.  I did discuss the cancer risks with the neph and his resident last week, they did confirm that skin cancer was a concern as well as other solid organ cancers.  Noted that a Tx patient gets checked over every year by a dermatologist and that most of the lesions are caught early enough to take care of them.  BUT, did they tell me to get screened now???  NO.  I am going to though, just to have a baseline to go by with the few small freckles/moles that I do have.

I have decided I am going to go through the process of being ready for a transplant as planned, because who knows, my donors may not pass the evals and I may want to be listed with UNOS just in case I find that dialysis is just too much.

I wonder if having a preemptive hysterectomy is in order...  One less thing to worry about.
Thanks for all of your opinions and observations!

[Hemodoc]

Okay...  I now have more information than I did when I originally posted.  This is good.  I did discuss the cancer risks with the neph and his resident last week, they did confirm that skin cancer was a concern as well as other solid organ cancers.  Noted that a Tx patient gets checked over every year by a dermatologist and that most of the lesions are caught early enough to take care of them.  BUT, did they tell me to get screened now???  NO.  I am going to though, just to have a baseline to go by with the few small freckles/moles that I do have.

I have decided I am going to go through the process of being ready for a transplant as planned, because who knows, my donors may not pass the evals and I may want to be listed with UNOS just in case I find that dialysis is just too much.

I wonder if having a preemptive hysterectomy is in order...  One less thing to worry about.
Thanks for all of your opinions and observations!

Sax, great to hear you are taking control of your treatment options.  The more you learn, the more involved you can become in your own care decisions.  If nothing else, this makes your medical team offer more detailed and precise information which I personally don't believe can ever hurt.  Keep your options open as you describe is absolutely the right way to proceed.  If we could foreknow the future and what is the best way to go ahead of time, that would be easy, but we simply can't predict that.  All we can do is make the most informed decision we can and be willing to accept what ever happens.

I fully support your request to have a skin CA screen done before your full evaluation is completed.  Once again, learn, learn, learn as much as you can about all of your options and at some point you will likely become more comfortable with one over the others.  The take home message is there are several paths that you can take that should offer you an excellent chance of not only meeting your modest goal of 10 years but much beyond.  The good Lord is in control of how much time any of us have, but for our own input, there are many modifiable factors that greatly improve our odds.  Learn of them and put them to practice as best you can.

Once again, I wish you the best in all that you choose to do.

God bless,

[chook]

After following this discussion, I'm ringing around today to organise another skin cancer screen. I've had two already and both clear, but the last one was almost two years ago. I'm thinking I'm due for another one. Thanks for all the info that has motivated me to do this.

[Jie]

The basic message is to detect cancers early. I echo Hemodoc's post. For the 10 years of survival goal set by Sax, either transplant or daily/good/optimal dialysis would work fine. As studies after studies show, the cancer risks during first several years after transplant is very low. For those transplant patients who having cancers, the mean time to first cancer is about 9 years. The most occurring skin cancers are not fatal if detecting and treating earlily. As Hemodoc mentioned, an optimal dialysis has very good survival rates, showed in Japan and Europe. The low survival rates of U.S. dialysis patients are partly due to the minimum dialysis used by most dialysis patients.

The big factor to choose transplant is quality of life as many posts indicate. For those transplant patients who survived more than 20 years, they already outlived most transplant patients. The high risk of cancers should not be a big deal. Some combinations of dialysis and transplant will reduce the cancer risks for the longtime transplant patients, then dialysis risks may pose problems to some patients. Knowing more about cancer risks will help patients to make a better decisions and decide a better weighting of different risks. There are so many studies out there on this issue, and it is not difficult to get good information about it. 

I like Chook's ringing. For those transplant patients, don't forget to make such a ringing once year.