orchiopexy (undescended testicle) - Mothering Forums
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#1 of 34 Old 05-22-2008, 07:01 PM - Thread Starter
 
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Maybe this should go in health and healing? But since it usually done on toddlers I decided to post this here.

Does anyone have any experience with an orchiopexy? His testicle seems to have moved up (or not moved down even though he grew) in the last 6 months. The urologist wants to do an orchiopexy. This wasn't even the reason we started seeing the urologist in the first place, I almost wish I didn't know so I didn't have to make this decision. I really don't want to put him under general, but I don't want him to be infertile either!

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#2 of 34 Old 05-23-2008, 12:28 AM
 
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I don't know much about this, but I was the careprovider for a boy who went to see a specialist (urologist?) for a pre-op appointment. The Dr. told them things would fix themselves and they didn't end up operating.

In his case, the opening that testicles decend from hasn't closed up yet, so his testes move up and down (I'd say they're mainly up). He was obviously swollen and in pain (hence the referal to a specialist) but as far as I know, the only info we received was to keep the surrounding sac moist with vaseline to prevent cracking and help with discomfort.

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#3 of 34 Old 05-23-2008, 07:51 AM - Thread Starter
 
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Thanks. It sounds like he had a retractile testicle, not an undescended testicle.

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#4 of 34 Old 05-23-2008, 12:50 PM
 
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My youngest son had an undescended testicle. His testicle had never come down and was almost in his abdomen. At around a year, his pediatric urologist indicated that the longer we waited, the more damage could be done. So we decided to go with the surgery. He had it done at 15 months. I was a basket case. We had some bloodwork done a few days beforehand and he did wonderfully with that. Then came the morning of. He was not supposed to have anything to eat prior to surgery except for clear liquids so breastmilk was ok (thank goodness he was still nursing). We went in around 7:00am, waited around, and then I carried him back to the OR. I nursed as they inserted the IV, which he barely even noticed, and held him as they put him to sleep. If I remember correctly, it took about a half hour to an hour. I cried, paced, etc. Then a nurse came and got me and took me back as he was starting to wake up. He woke up in an absolute foul mood. I tried nursing, rocking, singing, everything I could think of but he cried for about the first fifteen minutes. Then he settled down and was his normal happy self. We had to wait a few hours after the surgery as he had to be able to eat, potty, and walk before he could leave. By the time we got home (around 12:30pm), he was trying to run around the house in circles, jump off the couches, etc. It was pretty difficult trying to get him to stay quiet. I gave him tylenol pretty regularly the first few days but he never acted like it hurt at all. The only real limitation he had for the first week was to not have his incisions totally immersed in water. He still has small scars at the two incision sites (lower right hand of abdomen and on his right testicle) but they are fading.

Overall, it was a pretty easy experience. My top recommendation is to find a hospital that will work with you. Some won't allow you to take you ds into the OR or hold him while they are putting him under and that was a MAJOR requirement for me. My ds was extremely attached to me and there was no way I was sending him off with strangers. Also, if at all possible, go with a pediatric urologist not a regular one.

I know it is hard to think of your lo going under for surgery and hope that my description is detailed enough to give you some idea of what to expect.

ETA: My son was born in Feb of 2006.
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#5 of 34 Old 05-23-2008, 08:31 PM - Thread Starter
 
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Thanks for your story! I hadn't even thought that they wouldn't let me back! Geez. I will have to call and ask about that. We are going for a second opinion, but are already planning on the surgery. I am hoping that it will be harder on me than him!

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#6 of 34 Old 05-23-2008, 08:38 PM
 
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my son had an undescended testicle and had it repaired surgically when he was 2. the first surgery was actually done during an echo cardiogram he had scheduled (they clipped some blood vessels that were holding the testicle up) and the 2nd surgery was done during an open heart surgery. All of this was done at Children's Hospital in Boston. He was given medication so he was "out" prior to leaving us. He also had issues with anesthesia so couldn't be subjected to regular anesthesia. All in all, the testicle surgeries were uneventful (in the surgical sense) but nerve wracking. We were told that if we didn't have the operation early that he may lose the testicle.
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#7 of 34 Old 05-23-2008, 11:10 PM
 
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A good friend of mine had a son with this issue. She was not happy about surgery as an option, but finally decided it was probably for the best and consented to surgery when her DS was 22 mos. He ended up having a hernia inside that was preventing the testical from descending. Surgery went well and outcome seems good--that was just 2 weeks ago, but I think they are glad they did it, and glad it's over.

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#8 of 34 Old 05-25-2008, 12:31 AM
 
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My DH had an undescended testicle probably because he was a preemie. His parents did not have it surgically moved until he was into puberty (for no reason I can discern). For years, we assumed that cost him his fertility, and on paper he is indeed infertile (he produces very few sperm but those few are good swimmers). We went 6 years without birth control before our DD showed up, and boy, were we surprised!

That's our story FWIW. I was having quite a time reconciling myself to the fact that my in-laws might've prevented us from having kids. I am glad to know you are researching all the options and looking at the expediency of it. IMVHO - I would say ask all the questions, read as much as you can, and if it all seems right, the sooner the better.
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#9 of 34 Old 05-25-2008, 04:57 PM - Thread Starter
 
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It is nice to hear the story about your DH. I try to think of that as they want to cut my baby open.

The problem is, is that 6 months ago they thought that it was mostly down and did NOT need surgery because it was spending some time in the scrotum. Now that he has grown, it seems that the testicle has not come down as the body lengthened. Meaning that it just stayed at the same spot making it seem higher. I think that since it is so border line is why I need a second opinion before proceeding. And I think that since it is so border line that it probably hasn't affected his fertility as much as one completely in the abdomen does.

He is 25 months old, and if the second opinion thinks that it needs to be done, the surgery will be June 5th. I know they say 24 months is the magic loss of fertility age, but I try not to buy into that too much and hope that 25 months is fine.

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#10 of 34 Old 05-25-2008, 05:52 PM
 
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I know how hard this is for you.
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#11 of 34 Old 05-25-2008, 06:05 PM
 
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My son has an undescended testicle. We have an appointment with a ped urologist on June 5. No one has ever been able to "feel" his other testicle, so my concern is that if there is only one, I don't want them to do surgery "looking" for the other one.
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#12 of 34 Old 05-25-2008, 07:44 PM
 
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He sounds really similar to my son. His testicle appeared to be partially descended and the doctor (two doctors, both peds) weren't concerned as it seemed to be ok. Then they realized it was indeed stuck and not coming down. That got more obvious as he aged like it did with your son. So my son had his surgery after 18 months which is a bit late too. I try not to think about that as we can't undo it. But I would have done it earlier if I could have/knew then what I know now.

But beyond the fertility impacts you want it brought down before puberty so he can check for cancer (both testicles are at increased risk for testicular cancer if one is undescended). And at this point if it hasn't come down it isn't going to...and it seems like younger when they won't remember or understand would be a much easier recovery.

Anyway, our experience-I was a complete wreck about the anesthesia especially. They told me it is usually a very fast procedure--just a bit longer than ear tubes that happen in less time than it takes for the child to go under anesthesia. These are usually quick surgeries and it is a common one too. So that is good. My son came out of anesthesia combative and confused/disoriented. I was very scared by that. He didn't seem like himself. This went on a while and then he fell asleep and woke up like his normal self. I later was told this is really typical with kids and anesthesia. So I want to warn other parents of that possibility as it was really scary for me. My son's surgery turned out to be complicated (his testicle was very "stuck" I guess) and more invasive than typical. So he had a lot of bruising and swelling. Still, he was up and running around the next day. No problems or ill effects at all. He has a tiny scar on the bottom part of his scrotum on that side. Nothing that will make him self conscious as an adult and both sides look even.

I know it is scary.

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#13 of 34 Old 05-25-2008, 07:50 PM
 
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Originally Posted by HappiLeigh View Post
A good friend of mine had a son with this issue. She was not happy about surgery as an option, but finally decided it was probably for the best and consented to surgery when her DS was 22 mos. He ended up having a hernia inside that was preventing the testical from descending. Surgery went well and outcome seems good--that was just 2 weeks ago, but I think they are glad they did it, and glad it's over.
i forgot to add that my son also had a hernia.

i always recommend a 2nd opinion prior to any surgery so i think what you are doing is prudent.
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#14 of 34 Old 05-25-2008, 07:57 PM
 
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DH had an undescended testicle, also w/ a hernia. They were both repaired when he was 4/5. He has scars, but there were no issues with the surgery. There were no issues with his fertility, either.

One thing I will say...if you son has an undescended testicle, please ensure that he starts doing checks fairly young. Having an undescended testicle makes you 6 times more likely to get testicular cancer. We went through that Oct. 06. DH had just turned 25 when he was diagnosed w/ testicular cancer and had an orchiectomy.
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#15 of 34 Old 05-25-2008, 09:49 PM
 
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Re Sarah W's post, I had also read (years ago) that if the surgery is done by age 5 or so, that gives a good prognosis for fertility. Karen had said that 24 months is the loss of fertility "deadline", but I wonder if that is what you learned from your first dr or if that is the general guideline nowadays?

I would get a second opinion in any case, just to gather more of a consensus, but I wonder if the age "deadline" has changed or if there is more than one opinion on this.

Just trying to buy you time really... I can only imagine how hard this would be as a parent. I had the same thoughts about my husband's parents, but they eventually went through with it. SO glad you are researching this well and planning for your DS's fertility.
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#16 of 34 Old 05-26-2008, 12:13 AM
 
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Well, this thread has interesting timing. My son was diagnosed with undescending testicle when he was around 3 months. Urologist said he may have hernia and to bring him back when he was 12 months. At his 12 wbv, the pediatrician said he was fine. Well, this past friday I decided to take him in again because was concerned because I can barely ever feel his testicle. Dr said that I was right and referred me to Urologist. I scheduled an appointment for next month.

Well, today my son starting wimpering and holding his groin so I looking and he had a huge bulge that was sensitive to touch. My dh and I took him to er and they said that it was probably a hernia but could be inflamed testicle, twisted testicle, or something else so he sent us to Children's. Mind you, he was SCREAMING in pain. It was awful.

So, we get to Children's and the dr does some other tests and decides its a hernia. She then manages to push it back in and it was like night and day...my son stopped fussing immediately. SO, he is going to have surgery in the next week. Unfortunately, the couldn't do in tonight so they sent us home with prescription for pain killers and told us to really watch him. I know, crazy huh!! I cannot believed that this could happen again.

So, we're calling first thing Tuesday morning and begging them to do the surgery asap. I really hate the idea of it happening again

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#17 of 34 Old 05-26-2008, 12:27 AM
 
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Re Sarah W's post, I had also read (years ago) that if the surgery is done by age 5 or so, that gives a good prognosis for fertility. Karen had said that 24 months is the loss of fertility "deadline", but I wonder if that is what you learned from your first dr or if that is the general guideline nowadays?

.
Our surgeon told us that they used to say you had more time but now they know that cellular changes start happening even as young as one and he was upset we didn't get there until my son was so much older. I'm sure more happen as time goes on though. Here's some study information:
Quote:
Through testicular biopsy at the time of orchiopexy, germ cell density has been shown to decrease over time, beginning as early as one year of age.7,8 For this reason, treatment of the undescended testicle is recommended as early as six months of age and should be completed before age two.
http://www.aafp.org/afp/20001101/2037.html
Not that this is encouraging...and honestly I'm not too worried. Most people with one testicle are going to be able to have kids unless there is something else going on. Even then with technology now in fertility most can have kids with almost no sperm.

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#18 of 34 Old 05-26-2008, 12:28 AM
 
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Mind you, he was SCREAMING in pain. It was awful.


So, we're calling first thing Tuesday morning and begging them to do the surgery asap. I really hate the idea of it happening again
How horrible. I hope he has no more issues until the surgery.

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#19 of 34 Old 05-27-2008, 07:46 AM
 
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Re Sarah W's post, I had also read (years ago) that if the surgery is done by age 5 or so, that gives a good prognosis for fertility. Karen had said that 24 months is the loss of fertility "deadline", but I wonder if that is what you learned from your first dr or if that is the general guideline nowadays?
Oops, let me be more accurate. His sperm count was perfectly normal and we got pg our first try. However, that was after he'd had that testicle removed because of cancer. I can't testify to the fertility of that particular testicle because it was gone by the time we started thinking about children.
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#20 of 34 Old 05-27-2008, 12:29 PM
 
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We were told by our ped urologist to get it done ASAP (meaning btwn 12 mos and 18 mos) so as to not run the risk of any fertility problems. Also told that by the ped. urologist at the large university hospital nearby. They didn't give us a fertility "deadline" but it made sense to me to get it done sooner rather than later.

Of course, our son's testicle was secured in his abdomen and there was absolutely no way that it would descend on its own (we knew there was little likelihood of it from his birth, when they did an ultrasound to check its position and to make sure there was no obvious hernia).
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#21 of 34 Old 05-28-2008, 04:33 PM - Thread Starter
 
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We are going tomorrow for the second opinion.

Has anyone heard of the hormone therapy? I'm not big on having testosterone injected there, but I'm not big on general anesthesia either. From what I've read it usually isn't effective, but since it is so close I was hoping that it would make a difference.

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#22 of 34 Old 05-29-2008, 08:52 PM
 
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Then came the morning of. He was not supposed to have anything to eat prior to surgery except for clear liquids so breastmilk was ok (thank goodness he was still nursing). We went in around 7:00am, waited around, and then I carried him back to the OR. I nursed as they inserted the IV...
Our DS is also slated to have this surgery, and I'm quaking just thinking about it. But I wish we had your hospital -- it's great that you got to go in with him! Our hospital (Children's in Seattle) told us clear liquids meant NO breastmilk, because that's considered a food. That was very upsetting for me to hear, and I'm worried how to explain that to a 1-year-old! They want to schedule the surgery for first thing in the morning, but I'm wondering if later in the day would actually be easier, when he's more distractable. Clear liquids, they said, are only water and juice, and then he can have nothing AT ALL for some amount of time before the surgery -- they're supposed to let me know the specific amount of time when they call the day before. DS really doesn't drink out of a cup yet and doesn't take a bottle, and anyway I don't think nursing is so much about food for him as it is comfort, so how to deny that? Argh. And just the thought of putting my baby under the knife... I hate this stupid surgery!

Anyone else have experience with keeping your LO from nursing for several hours without major screaming? Anyone have encouragement on ignoring the hospital recommendations?

The main reasons we're intending to go through with it are to possibly increase future fertility (even though he has one normal testicle so could probably get by just fine) and to enable checking for testicular cancer more easily. If not for the first point, I'd wait longer until DS was old enough to understand what he was going through with the surgery (and the anesthesia seems safer with an older child), which is maybe why some parents used to wait until grade school or puberty age. But I know a few stories of that ending in infertility, so I do want to respect my DS's future reproductive options. I'd hate for him or his future spouse to look back at me as the person who kept them from having their own babies just because I was too squeamish to endure a day or two of unpleasantness. But it's hard when he's so little to imagine him into the future like that! All I have is him now, when I so don't want to bring him to an operating room.

Did any of you feel the need to ensure that your DS remained uncircumcised and unmessed with during the operation? I'm a little paranoid that they'll do something hinky with his foreskin like retract it, but I'm feeling sheepish about bringing it up, as if I'm accusing them irrationally in advance. How do you bring this up tactfully but firmly enough that everyone on the surgical team gets the message?

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#23 of 34 Old 05-29-2008, 09:07 PM
 
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Has anyone heard of the hormone therapy? I'm not big on having testosterone injected there, but I'm not big on general anesthesia either. From what I've read it usually isn't effective, but since it is so close I was hoping that it would make a difference.
I've heard of the hormone therapy, though our consulting urologist never even mentioned it. But, like you said, your son's testicle sounds more retractile or at least just at the cusp of descending, so it might be more effective. Let us know what you find out from the second opinion if you brought it up. Is it possible, though, that the testicle is hung up on something that's keeping it from descending? In that case, I suppose hormones wouldn't help it lengthen out. I wish there were more time to wait and see, but there's that ticking fertility clock -- sigh.

They couldn't feel our DS's undescended testicle at all, so ours is as much an exploratory surgery as it is to bring it down if/once they find it. I think it's a good sign that they at least know where your son's is, so maybe there are more options, or at least it would be a faster surgery. GL!

Just a small rant about the ped urologist we saw -- we drove an hour and waited another two for a 5-minute visit during which she confirmed what two other doctors and our common sense/research had already told us: yup, no testicle, needs surgery. She doesn't even schedule the surgery for us -- we have to call someone else to handle that, and that person was too busy to talk to us while we were there. Just got a bill for the visit: $300. : The good news is I found out we qualify for the poor-people discount at the hospital. (It's really called the Financial Assistance Program or some such, but I prefer poor-people discount. ) So that will help us afford this surgery. I can't imagine how much it's going to cost, and no one at the hospital will give me an estimate! Do any of you know who already had it? We have to pay for our own insurance and have a $6,000 deductible. I was really trying to get this stupid thing scheduled for last year when we had better coverage, but hospital bureaucracy moves sloooowly.

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#24 of 34 Old 05-30-2008, 12:44 AM - Thread Starter
 
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Our second opinion today was very interesting.

He said that *paternity* is NOT statistically lower with one testicle. Sperm count was, but not actual paternity. He said that he would still recommend having it done, but that even if I didn't he should still be able to have children. He also said that that testicle even if moved down probably won't ever be fertile anyway. I DO think that it needs to come down to check for testicular cancer, but I don't think I am in a hurry in any way.

It was nice to have a different view on things. He seemed very educated on the topic and talked to me with both sides in mind. I may just drive up there to have the surgery done at some point, but I'd hate to have my baby strapped in a 5 pt harness car seat for an hour and a half right after they cut into his package.

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#25 of 34 Old 05-30-2008, 02:40 AM
 
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Our second opinion today was very interesting.

He said that *paternity* is NOT statistically lower with one testicle. [...] I DO think that it needs to come down to check for testicular cancer, but I don't think I am in a hurry in any way.

It was nice to have a different view on things.
Thank you so much for sharing your second opinion for free!

This is exactly what I've been thinking -- one testicle has PLENTY of sperm to make a baby, assuming that the descended testicle is fine. I do have some worries that an accident or illness might harm DS's normal testicle, but such an event could end up harming both testicles together, and is a slim chance regardless. There's also a weird chance I've read about where the undescended testicle could twist around and cut off blood supply somehow to the descended one and harm it (??), but again I would think that would be a rare occurrence. There's also the possibility in our case, since no one has been able to feel the testicle anywhere, that the second one never even developed, which would mean that it should probably still be removed but that time would not be of the essence -- unfortunately, there's no way to know without the surgery.

What do you think you're going to do? How long would you wait to do the surgery?

The ped urologist we talked to was very cut-and-dry and didn't offer any other opinions or even suggest there were options. I knew from my own research and consideration that that was a limited view, but it's nice to hear that an expert said so! The urologist we saw, for instance, said that without the surgery, DS's risk of cancer would go up -- whereas from my research, I understand that his risk of cancer has gone up anyway due to the abnormal development, and that foregoing the surgery would just increase the risk of not detecting the cancer early. That's not an insignificant risk, which is why it's probably good to do the surgery at some point, but when is ideal in that case? Older childhood?

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I'd hate to have my baby strapped in a 5 pt harness car seat for an hour and a half right after they cut into his package.
I never thought about that! Ouch. Of course, DS's favorite thing right now (and probably for all time...) is playing with his package, and he is not at all gentle. lol

Our regular ped has a personal experience in that her DH's mother chose not to do the surgery for his TWO undescended testicles until school age, so he was indeed infertile. (Of course, there's no telling he wouldn't have been anyway.) But, then, they've adopted a daughter and are very happy. But it makes it a little awkward for me to tell our ped we wouldn't be doing the surgery young. I think I might need to go with a second opinion as well, just to have something to bring to her because I wouldn't want to hurt her feelings on such a sensitive subject.

Another $300...sigh.

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#26 of 34 Old 05-30-2008, 09:02 AM - Thread Starter
 
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What do you think you're going to do? How long would you wait to do the surgery?
I'm really not sure yet. We have an appointment for next Thursday and I haven't decided what to do. It is with the first doctor that I really don't like. I'd rather see the second one since he even said he would take a less invasive approach since it is so low (he will just make an incision in the scrotum and not in his abdomen.) I am going to call the first doctor and try to speak with him about it.

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The urologist we saw, for instance, said that without the surgery, DS's risk of cancer would go up -- whereas from my research, I understand that his risk of cancer has gone up anyway due to the abnormal development, and that foregoing the surgery would just increase the risk of not detecting the cancer early. That's not an insignificant risk, which is why it's probably good to do the surgery at some point, but when is ideal in that case? Older childhood?
The one I saw yesterday mentioned this to me. Then I stated that I had read that the increase in risk was regardless. He said that there is information both ways. No matter what it is a real threat that he needs to know his whole life to stay on top of. I don't really know an ideal time, hence my indecision!

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#27 of 34 Old 05-30-2008, 09:04 AM - Thread Starter
 
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I did forget to post one thing about my conversation with the doctor. He told me that IF DS was between six and twelve months of age that he would recommend getting the surgery ASAP as it may still have some fertility potential, but that DS is too old to have much.

Alki Mama, I noticed that your DS is a lot younger than mine, you make want to keep that in mind.

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#28 of 34 Old 05-31-2008, 03:58 PM
 
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Thanks for the extra info!! That's really helpful. It would be great if your DS could at least have the less invasive surgery -- here's hoping that works out for you.

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He told me that IF DS was between six and twelve months of age that he would recommend getting the surgery ASAP as it may still have some fertility potential, but that DS is too old to have much.

Alki Mama, I noticed that your DS is a lot younger than mine, you make want to keep that in mind.
I had heard that the new cutoff for some doctors was getting closer to 6 months because of the fertility issue, which is why I'd been trying to get DS in from when he was 4 months old -- 7 months later, I got my first appointment! The wheels turn slowly... Now DS will be 14 months at the earliest that he has the surgery, so I'm not sure how good that testicle's chances are fertility-wise. But, certainly, if there is a chance, the sooner the better.

Philosophically I've been thinking this whole thing over. The urologist told me they do ~5 of these surgeries a week at the one hospital. In some sense, of course, that's very reassuring that it's a safe and common procedure. But then I wonder if it's that common a "defect" why it needs to be fixed at all. The thing I come back to is the risk of cancer, which I'll assume didn't used to be as big a risk as other diseases in an evolutionary sense. But I can't imagine that such a common problem would lead to widespread infertility, when the whole goal of any species is to reproduce, and humans have been managing just fine in that regard. Anyway, the increased risk of cancer is still there, so I agree something needs to be done in this day and age when we can. I just wonder if someday people will look back at orchiopexy and think, "Remember when they used to cut into 5 babies a week? How heavy-handed and barbaric." But that will be when there's some fabulous new way to detect testicular cancer early. Maybe orchiopexy will be the new tonsillectomy, which they used to do willy-nilly for sore throats before realizing that maybe cutting off body parts wasn't the best idea in all cases.

Anyway, I don't see a better option right now, but I'm having trouble finding a surgeon who'll discuss the matter reasonably with me and not just knee-jerkingly recommend...hey, immediate surgery, whaddayaknow. I'm glad you were able to find someone who'd talk with you a little more in-depth. Thanks for sharing what you found out, and best wishes in making your decisions.

mdcblog5.gif Hobo Mama • living on the beach with DP (Jun 98) and DS1 (Jun 07) and DS2 (May 11) familybed2.gif

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#29 of 34 Old 05-31-2008, 04:13 PM
 
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The one I saw yesterday mentioned this to me. Then I stated that I had read that the increase in risk was regardless. He said that there is information both ways. No matter what it is a real threat that he needs to know his whole life to stay on top of. I don't really know an ideal time, hence my indecision!
You're right. Here's a link I came across from a 2007 review of studies suggesting that doing the surgery before age 10 would decrease the cancer risk.
http://www.urotoday.com/58/browse_ca..._abstract.html

I keep wondering about the psychological aspect for the surgical patient as well -- is it easier to deal with and recover, the younger the baby? I would imagine so. A grade schooler who understands what's going on would be old enough to fear what's going on. A baby might be very fearful in the moment but then quickly forget.

Despite all my hesitancy, I'm leaning toward just scheduling and getting it over with this summer.

mdcblog5.gif Hobo Mama • living on the beach with DP (Jun 98) and DS1 (Jun 07) and DS2 (May 11) familybed2.gif

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#30 of 34 Old 05-31-2008, 05:21 PM - Thread Starter
 
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Despite all my hesitancy, I'm leaning toward just scheduling and getting it over with this summer.
Yep, me too.

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