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

[Sax-O-Trix]

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? 

[MooseMom]

There just is no perfect solution.  There are plenty of people out there who are perfectly happy with their dialysis modality and wouldn't touch a transplant with a 10 foot pole.  Others are desperate for whatever they have to do to get off D.  My advice would be to make a list of all of your concerns about transplantation and post-transplantation and ask your neph.  You could always start the listing process and meet with a transplant coordinator and then pull out if you decide this is not the path for you.  No one is ever going to force you to have a transplant, even if you are listen and they find the perfect match for you.

[Des]

I agree and want to ad...
Some people list in any case and then see how they feel at the time when a kidney is presented as this can take a while (years)and feelings change from day to day.
Transplant is just another form of treatment and not a cure. It has all it's side effects just like any other treatment.

The difficult part is : To find the form of treatment that is best for you.

Information ! Information! is key!

Good luck in your choice.   

[RichardMEL]

I'm still waiting for a transplant so I can't speak "from the other side" - but I can put my two cents in with my opinion on the issue. For mine, yes it is a concern, but heck staying on dialysis can be a concern (PD isn't an option for me, unfortunately). The way I see it either way contains risk of some form or other, and I'd rather choose the best *treatment* option for me - that includes the option that provides the best lifestyle that it can, for as long as it can. So yes, I'm willing to take my chances. We know plenty of folks who have lived literally decades with transplants without serious complications, and that's good enough for me.

Sax, I am not sure how old you are and your goals etc, which absolutely will influence any decision you make - and at the end of the day you're not being a party pooper, but trying to make an informed decision that is the best for you and what YOU are comfortable with - I think that actually means a lot, and how comfortable/happy we are with our medical situation can influence how well we do. What I mean is that if you're concerned and worried than can create negative anxiety, and thus stress, which can cause physical problems.

Yep, there are many people doing well on long term dialysis - quite a few live right here on IHD. Just as much as there are many people doing well with transplants - so I think the choice comes down to where you are at,. what your longer term goals are, and how comfortable you feel with the various options you have.

As I said above for me, and just me, it's worth it - I will roll the dice - My view is that something bad can happen if I stay on D, or get a transplant or whatever.. I suppose I'm sort of a fatalist - if it's meant to happen, it will one way or another... since I can't do anything about that one way or another, then my choice is based on the best longer term treatment option for me, and that is to go with a transplant.

Everyone else's mileage may vary.

 

[Sax-O-Trix]

I am a widow a few weeks shy of my 44th birthday and my main concern lies with living long enough to get my 11 and 13 year old daughters to adulthood.  Basically, 10 years would be great, anything beyond that would be icing on the cake. 

The thought of HD is just plain frightening...  Needles, blood, needles, pain, needles, finding time to sit still for hours at a center, needles, not being able to travel easily w/o advanced planning, needles, being wiped out after HD sessions, needles, possibly not being able to work (loss of health ins., decent pay and life insurance), needles, being at the mercy of nurses, needles...

PD seems like it would be easier (relatively speaking.)  I would be in charge of doing the exchanges, could still travel (always by car and usually only for a few days at a time, so taking supplies with me seems reasonable), hopefully continue to work FT,  having to be super sterile is a concern (dogs and cats), but it seems to beat HD for me...


Obviously, TX would offer the most freedom and possibility of as normal a life as possible once you get regulated on the meds.  If cancer weren't such a frightening prospect, I wouldn't even be hesitating about a TX.  I meet with my neph on July 9th, I will be armed with loads of questions!

[RichardMEL]

Sax, just on your needle phobia - I am a big wuss when it comes to needles also - I just do not look when they are going in (coming out is much easier for some reason  ). When they stick the needles I think about something else (usually young ladies  ) or I chat with the nurse doing the needling(amazingly I can make them laugh by saying something stupid and they manage to needle me just fine!!!). Really after awhile most of the time I just don't feel it, and needles aren't really a big deal for me anymore. Blood? yeah well it's this red stuff going through a tube... looks kind of like a nice red wine... luckily i don't drink red !  ).

I think whichever option you take: PD, HD and/or TX down the track you will indeed be there for your daughters to blossom into lovely young ladies!!! I have no doubt of that. There's no reason to think you wouldn't - if you're fairly healthy apart from the kidney thing there's no reason why you can't be bantering with us, and your kids, in 25+ years.

Be positive. This is not the end of the world, and while there are risks to any treatment option there are risks sin every day life - heck I could get hit by a bus when I leave my office. That's life. If you don't take a risk, you don't get a reward. You have two beautiful rewards right now, but there's more to come (rewards I mean, not children!!)

 

[monrein]

Having had a transplant for 23 years (at 31 after 5 years of dialysis and doing my own needles) and now on my second transplant after another 10 months of D, for me the choice is clear.  My quality of life is far better with transplant than on D, although I firmly believe that we must each find ways to live with what we have and if D is what we must do then we can do it with grace and indeed have good and joyful lives.  There are risks everywhere we look.  Dialysis has long term implications...so do transplants.  I think all of us afflicted with this illness need to do our level best to care for our bodies and our attitudes as best we can...with help whenever necessary.  With transplants I'm super careful about the sun because of cancer risks, I'm very attentive to the food I eat, I consider exercise a part of my "job" to remain alive and healthy and so on.   Of course, this isn't all that much different than what we should all be doing to get the best performance from our bodies anyway...kind of like cars in a way...we just happen to need extra fine tuning and attention.

[MooseMom]

Sax, I have the same concerns as you.  I am trying to get on the transplant list because I think that would be the best treatment for me, but once I am listed, I will probably have to do D for the years it will take for me to get a new kidney.  So, I have to decide on a modality, and I have chosen hemo but NOT in a center for all of the reasons you have outlined.  Yes, there is the needle issue, but you have no idea how many people have posted about their aversion to needles only to overcome them and....OMG....STICK THEMSELVES!!!!!!!!!!!  Can you believe that?  You may want to investigate NxStage which is home hemo you do each day for a shorter period of time.  When my DH gets home from work, we make dinner and then usually read or watch something from Netflix.  Once I go on D and if NxStage is a viable plan (I don't see why it wouldn't be), we will do the same thing just with me on my nifty neat-o portable dialysis machine.  Since you dialyze each day, the clinical results are very good, and you can travel with this setup, too.  Please, look into this option.  If you hate it, you don't have to do it.

[omaha_Style1]

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[cariad]

Hi, Sax. I am extremely biased in favour of transplant as hemo was miserable (but thankfully brief)for me both times I had it. Needles were not the issue (don't think they were ever used), it was severe headache and vomiting that made me hate dialysis.

I wonder where the cancer fear is coming from? Do you have a strong family history of it? They will always test for both your EBV status and CMV status before listing you, but you will have to ask if you want to know the findings. I received a kidney from my husband and I found out I was EBV+/CMV- while he was positive for both. Therefore, I am on Valcyte (to hopefully prevent CMV infection) for a few months, maybe a year. I am going to bet you are EBV+ since at least 75% of the adult population is. Have you ever had mono or been around someone who has had it? The primary cancer concern for kidney transplant patients as far as I've ever known is malignant melanoma, which is unrelated to EBV, but there is much a person can do to reduce their risk (i.e. wear sunscreen always and wear clothing that covers more of your skin). I don't worry about the clothing so much when I have sunblock on, but I think you can get clothing rated at SPF 50 (I know they make these for kids, not sure about adults).

The trouble with PD for you, being so young, is that 10 years as I understand it would be a good long run for peritoneal. Not impossible, but getting toward the upper limit of what one can expect from this type of dialysis. I know you said you would be happy with ten more years, but why set your sights so low? Whether you choose dialysis or transplant, I think you can expect several more decades. I know I intend to live to see if my children become the people that I suspect that they will, and to see what kind of parents they make.

Could you give some context to your GP's statement? Loads of people, some of them with MD degrees, lack any real knowledge of transplant. Talk to a nephrologist, preferably a transplant one, about your concerns. I would get listed if I were you, just to keep your options open and earn time.

It is your decision in the end, and no one here is going to fault you for choosing one path over the other. Best of luck!

[AIRon]

I must admit I have the same fear Sax, when I was told that cancer was a risk I thought great! firts they tell me a new used kidney may only last 10 years in some cases than I might get cancer from the drugs...so let me get this straight my new kidney stops working and I get cancer, so now I have kidey failure and cancer too...I explained this too a guy at work on day and you know what that arse said too me, he said well yeah life is a big gamble you could be in the road and get hit by a car. I didn't say anything back I just thought yeah your right life is a gamble because I could just choke you too death right now. So this is just a decision yo are going to have to make when the time comes, but I think it might be worth the risk for me.

[Sax-O-Trix]

My young GP asked me if I knew that transplant patients were at a higher risk of cancer and he wanted to know if I was willing to take that chance...  Mind you, I only see this GP when absolutely necessary.   I don't trust him, but can't find another GP in our rural area who is taking new patients.  I was in his office for my yearly "here I am, I am in compliance, see you later."  He is clueless about my kidney stuff.  I have given up on trying to keep him informed.  Thankfully,  I have been going to the same nephrology practice for nearly 10 years at a major hospital an hour from home.  I don't do anything medically without consulting my neph.  The GP is for colds and stubbed toes.

Knock on wood, my family does not have a history of cancer.  Heart attacks and strokes seem to be our lot.  I have known several people who have been dx with cancer in the past few months and thought I'd scare myself a bit by researching cancer rates among all transplant recipients after seeing the "warning label" for kidney transplants in the info packet I was given by the transplant team.  Thus the EBV questions.  I could deal with staying out of the sun, I live in the Northeast, work inside during the day and am not a sun worshipper to begin with.

I have completed the evaluation process and am waiting to get tenure (making sure I have insurance) with my job (board meeting appointing tenure is in the next two weeks) before I go on the active list.  Transplant case manager said that I will go active when I call them to okay the call to my insurance company.

I have at least one sibling ready to complete the evaluation process and we are waiting on another to see about his ABO/Antigens/Crossmatch results.  The plan has been a preemptive transplant since the beginning.  I was 100% sure that that was the way to go.  I am still pretty sure it is the way to go, but as the  transplant is becoming more "real", I guess I am just freaking out a little.

20-30 years would be heaven on earth.  My kids mean more to me than anything in this world and I am willing to do whatever it takes to be here for them.  Being widowed just compounds those feelings...  The stresses of being the sole provider are enormous. 

[staceyand joe92]

I have two teenage daughters and I am in my 40's  also and I knew my only option was to get listed for a transplant. Dialysis was hard on myself and my children. I was wiped out after D and couldn't do the normal mommy things they needed me to do. I am fair skinned with red hair and higher risk than most for skin cancer. My Neph went over this with me multiple times but I didn't think twice when the call came for my transplant. The last 7 months post transplant have been amazing compared to the past five years of being sick and then on D. I have few side effects and I exercise ,eat healthy  and drink water like it is my job. I don't take one moment for granted. I have a hard time even taking a nap because I feel like I am wasting my time.  To get a transplant or not is not something to take lightly and you are very smart to be conflicted. It is a decision only you can make. For me it was easy.....I knew I couldn't live on D and function at the level I wanted to or needed to. Listen to what your instincts are telling you and you can't go wrong.

[CharmedMist]

Cancer was and is a big scary point for us as well. Married to a man that has smoked since he was 14 years old, already has the beginning signs of emphysema and has COPD, it makes me worry what the anti-rejection meds would do.

In the last 3 years, we've waffled back and forth between wanting it. He has 3 siblings all willing to give him a kidney, right now it's a matter of him quitting smoking, losing 60 lbs (which is hard to do on dialysis when you don't feel good) and being "compliant" to what the doctors already tell him to do.

It's a big choice and to be honest, right now dialysis seems the "safer" bet for us.

[cariad]

OK, I am getting a picture of your GP. Stubbed toes I understand, but are you quite sure you want to trust him with colds?

I have never heard of an MD trying to talk someone out of a transplant, but there is a first time for everything I suppose. Perhaps your GP should come on here and talk to some genuine transplant patients? I have been a transplant patient for over 34 years, and I am incredibly thankful to be able to report that I have no cancer. I have a stat for him, if you ever find that you are anxious to beat your head against that wall again: the average (or more accurately 'half-life') of a live-donor kidney transplant is 25 years. This means that after 25 years, 50% of recipients transplanted this year will still have their kidney. So, if 20-30 years sounds good to you, I would jump and not look back.

I have known several people who have been dx with cancer in the past few months and thought I'd scare myself a bit by researching cancer rates among all transplant recipients after seeing the "warning label" for kidney transplants in the info packet I was given by the transplant team.

I'm sorry those people had to receive this scary news, but I did also laugh at reading this. I find myself wandering around the Internet at times, researching these possible side-effects, too, and then end up thinking "why am I doing this to myself - I know what misery this brings" and I stop. I think in many ways I was lucky because little was known about transplant when I had my first, and I really had no say in my treatment anyhow.

Very normal to 'freak out' as the transplant approaches. I was a bit of a wreck before my second, and then I got so sick from dialysis and everything else that the big, emotional scene I was expecting with my husband (donor) or the surgeon never happened. I had such a splitting headache, I could barely respond to anyone, so no tears or last-minute agonizing about whether to call it off or not. I only have the vaguest memory of saying goodbye to my husband, and my operation was only 3 months ago. I guess headaches are occasionally good for something....

Good luck. It sounds promising for you. I feel for you on the stress of being a single mom.

[Jie]

With PD, HD, or transplant, we are all going to die with much high rates than the general population. The question is which one will get us to live a little longer with a better living quality. The answer is very clear: transplant. The mortality rate of transplanted patients die from cancer is much lower than the patients on dialysis. If one just wants to live 10 years as Sax said, transplant is perfect, the mean expected transplanted kidney life is 11-13 years with deceased donors and 18-20 years with living donors.  If one wants to live more than 20 years, it may be good to do some good dialysis for a few years and then have a transplant. Cancer occurs most likely for longtime transplanted patients. 

[RainingRoses]

Sax, I went through the same thought process before deciding to get on UNOS.  My mother was transplanted in the mid-80's, and I saw the back side of a transplant.  The prednisone had destroyed all of my mom's major organs.  Since she had Alport's Syndrome, she went into kidney failure with relatively good health.  The end was simply dreadful.  She always told me it was worth it;  she said she had 13 good years she would not have had otherwise.

I've been on dialysis for almost 4 years now.  The first 3 went quite well, and I still vacillated on whether or not to take the transplant when I got the call.  The last year?  Not so much. I'll take that kidney when I get the call.

Age matters, too.  I'm 59 so a transplant is not going to add so much quantity as quality to the years I have left.  Were I in my young adulthood, I'd probably approach this quite differently. Also, post-tx drugs have been refiined since my mom's day, and I hope to have a better outcome 13 years out than she did.

I'm still on the wait list after 3 years.  Good luck in making your difficult decision.

[bette1]

I've done PD, HD and Transplant.  At first I didn't want a transplant because I was worried about the risk, and I was doing so well on PD.  The problem is that long term dialysis wears on your body, and you are on a downward spiral health wise.  You don't get better, you just try to maintain you health.  Transplant makes your health better, and the drug side effects are the price you pay. 

Also, everyone does not get every side effect, and the drugs effect everyone differently.  So you may have an increased cancer risk, though never get cancer.

[BrandyChloe]

I had to be on PD for 3 months before my transplant in December and when I went to meet with the surgeon who was going to put in my catheter, he told me, don't do a live donor transplant! Cadaver transplants work just as well! I was crushed. I was so conflicted as I never wanted to be on dialysis but my brother wasn't through with his compatibility testing so I was going through the process of starting dialysis, I was torn about my brother having such major surgery, and there was a doctor telling me not to do live donation. (Turned out he had a good friend whose mother donated her kidney and she ended up in kidney failure as well.)

I also started reading things on the internet about what could go wrong with a transplant and all the side effects of the drugs, etc. I am 6 months post transplant now and, all in all, very happy with my choice. Yes, I have to change my life style a bit (you can find lots of posts on post-transplant life) but to not be tied to that PD machine is heaven.

As others have said, in the end, you have to live with your decision. Just know that there are pros and cons to whatever you choose. There isn't a perfect solution to our kidney disease.

Good luck with your decision.

[cariad]

With PD, HD, or transplant, we are all going to die with much high rates than the general population. The question is which one will get us to live a little longer with a better living quality. The answer is very clear: transplant. The mortality rate of transplanted patients die from cancer is much lower than the patients on dialysis. If one just wants to live 10 years as Sax said, transplant is perfect, the mean expected transplanted kidney life is 11-13 years with deceased donors and 18-20 years with living donors.  If one wants to live more than 20 years, it may be good to do some good dialysis for a few years and then have a transplant. Cancer occurs most likely for longtime transplanted patients.

Sorry, but I have to disagree with much of this. Every surgeon I have ever spoken to and journal article I have read said that preemptive transplant is the way to go. It is perfectly possible to live 20+ years with a transplant, and Sax has said she has live donors ready to go and that this is more of an insurance issue now. Obviously one can live this long on dialysis, but it will certainly require more commitment and strict attention to daily maintenance than transplant ever will. I am sorry to say, but the innovations in transplant are moving at a much faster pace than dialysis. The iniquity of this has been discussed. Research seems almost exclusively focused on transplant.

Jie, do you have literature showing a link between long term transplants and cancer? I have never read about a long time transplant recipient coming down with cancer. I am sure these people exist, but do not necessarily buy that the numbers are greater than in other recipients. I think when one gets to a certain number of years on these drugs, it is difficult to say whether the drugs have caused this or if these individuals would have contracted cancer regardless. Breast cancer runs in my family, sort of, as it seems to only appear late in life. Both of my grandmothers had/have it. One died at 92, the other is still alive at 90. Cancer appears in almost everyone who lives long enough - eventually our cells ('our' meaning the human race) will malfunction. My cousin (all of 27 or so years old) was diagnosed with stage iv brain cancer (inoperable) last year. The doctors don't know why he got this. It makes me grateful that all I have is piddly ESRD. Transplant or dialysis is in fact a perfect solution when I look at his options.

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.

[Jie]

It is just a common sense that the longer one takes the post-transplant drugs, it exposes more to cancers and has a higher risk, like skin cancer. I know some transplant patients with skin cancer after about 20 years of transplants. What I tried to make is that how to minimize the risk of cancers and take the fear of cancers out of transplant.
 
Cariad, I think you have very little disagreement with my whole statements except for this cancer issue. If you disagree most of my statements, then you contradict youselves that the transplant is better than dialysis. Nowdays, many surgeons like preemptive transplants. Not too long ago, a few months of dialysis before the transplant were preferred to cleaning the wastes and stabilize the patients before the transplant.   

[natnnnat]

Watch it with skin cancer:  My friend James had a transplant and got skin cancer which got very bad, eventually he died I think of complications related to skin cancer?  I'm not sure what the actual cause of death was. 
And my DH had some skin cancer cut off his head the other year. 

[cariad]

It is just a common sense that the longer one takes the post-transplant drugs, it exposes more to cancers and has a higher risk, like skin cancer. I know some transplant patients with skin cancer after about 20 years of transplants. What I tried to make is that how to minimize the risk of cancers and take the fear of cancers out of transplant.

I think I do disagree with much of your previous statement, and I also disagree with relying upon 'common sense' rather than data. It seems common sense to me that long term transplant patients tolerate these drugs really well and therefore may not be as susceptible to many of the more dangerous side effects. Skin cancer, sadly, is not an uncommon cancer and as I said, you cannot say that an individual transplant patient who gets skin cancer would not have had it without the transplant drugs. You stated that you recommended a few years of dialysis before a transplant for the option of living twenty years and I frankly find that advice odd. It would be much wiser to have a preemptive transplant and, if the time ever comes, go onto dialysis should that transplant fail and a second transplant is not an option for whatever reason.

I don't know how you define "not long ago". I had my first eval in 2004 and was told that I should consider getting a transplant immediately to avoid dialysis. I had about a month of emergency dialysis in 1976 while donors were tested with my first transplant and they certainly gave me as close to a preemptive transplant as they possibly could. I am certain I would not have survived several years on dialysis - but you're right that I would not have died of cancer. Anyway, I was trying to see if you had more information that I did not have, not start an argument. I did not realise that you were approaching this solely from an angle of how to avoid cancer as a side effect.

Nat, I read about your friend James in another post of yours and I am so sorry. I have a mineral make up that I use (a powder) that has SPF15 in it. I now apply it to my eyelids after reading about him. (I use a stronger lotion everywhere else, but my eyes water horribly if I get the lotion too close.) I have been lucky - no skin cancer (yet, touch wood) and I spent most of my childhood in southern California, and rarely used sunscreen. I was a tennis player, so outside all the time. If I do get skin cancer, I would have a hard time just blaming my transplant history. If only we could go back and undo these early mistakes....

[natnnnat]

Absolutely right!  The skin cancers apparently could have been damage done ten years ago, Gregory's skin specialist told him.  I thought quietly about my years sunbaking as a teenager and into my 20's.... 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.  These days Gregory wears big cricket hats, and I walk in the sun carrying parasols (well it looks dandy I reckon)... And I keep a close eye on skin cancers, they are visible, therefore, findable.  Found early, they are also treatable...  and for the record, while I think transplant isn't for everybody and wonder what choice I would make, Gregory is clearly and without question in favour of transplant over dialysis.

Modification:  (another thought) My second cousin? would it be?  The husband of my father's cousin?  Has been a fisherman all his life, and he has some nasty dangerous skin cancer now and having radiation etc to try and deal with it.  And no transplant.  My point is just to say to all of you whether you've got a transplant or not, be sun smart (tm).  Yes, I am a volunteer skin cancer spruiker these days. 

[monrein]

I see a dermatologist every year to 18 months or so and we review all possibly dodgy looking things.   A few times things have been sent off to the lab but never anything cancerous so far.  Touch wood but so far so good and I've been on immunosuppressants since 1985.