Question for the experts here

[Margaret]

Hello and I hope everyone is doing well, I think of you all the time.

My question and sorry to be personal but I am not sure who else to ask:

My husband has finished with his 4X rounds of chemo, which was almost 3 months ago and he had the RPLND in early December. My hope has always been that more children ‘could’ be in our future, even though the odds are not in our favor. We did not have time to bank sperm so we are going to have to rely on the old fashioned way or the grace of God to get pregnant.

The oncologist said that 2 months post chemo; if we were to get pregnant the baby should be fine and suffer no side effects so that there was no need to use protection. The urologist said that we should wait at least a year post chemo before we stopped using protection because of the risks to a baby. So I guess I am left wondering who is correct. I would love to live my life normally and if something wonderful happens for us then great…but now I am concerned that we should be using protection because I don’t want to jeopardize a child by getting pregnant too soon after chemo and having it cause birth defects.

We have gotten such radically different opinions I thought I should ask here. I do however realize that our chances are very slim of even having this issue to worry about because my husband may have been sterile even before he was diagnosed because of the T-C, but I always like to keep hope alive. )

Thanks!!

Margaret

[mk6439]

Margaret (I'm actually a Margaret too), my husband and I are wondering the exact same thing right now. I don't think there's any definitive guidance unfortunately, I've read anywhere from 6 months to 2 years. My husband's oncologist told us to use condoms for 6 months after 4xEP. My fertility doctor told us to wait a year before trying naturally, but when I told her my husband had not had radiation and that his onc told us 6 mos, she said 6 mos "sounded reasonable." I think we're just going to give it a shot at 6 months.

[Margaret]

Well hello Margaret! For me, it is a feeling of wanting things to get "back to normal". I am not sure how men feel, but I think it is hard for my husband to go through all this, feel in some ways that the choice to have another child was taken away, and then ask him to use protection. It is a bit strange. But it would be a terrible turn of events to be blessed with the miracle of another child just to be told that there were complications due to the chemo....it is that thought that brought me here asking questions.

I hope I am not treading on ground that is too personal to ask here. Thanks all in advance.

M.

[dadmo]

Check out the link to the tcrc web site it has some really useful information. In my sons case the oncologist wanted him to wear protection after chemo because his ejaculate wouild contain traces of the EP. It wasn't really an issue of birth defects. However the standard recommendation is to wait 6-12 months before trying to concieve, as a side note we have had several members become pregnany within the first year and all of the children have been fine.

[Mom]

The first thing that should be done is a test to see if your husband is producing sperm and the quality, quantity and motility of what he is producing. It just might be a moot point as to when to start trying for a child based on those test results. Don't stress yourself out trying for a child when it might not be possible just yet. In 1973, after 4 years of marriage and no child, we were tested. I was fine but my husband had a low sperm count, less than 1 million and half of those didn't move. They didn't have ultrasounds then nor the technology there is today. We were told for all intents and purposes he was sterile and to forget having children. The doctors were perplexed why he had a low sperm count. We started looking into artificial insemination. I was completely relieved of stress knowing that I was going to have a child. They were going to mix my husband's sperm with donor sperm. Through a miracle and NO STRESS I got pregnant with my son the old fashion way. The doctors were shocked. Five years later my husband was diagnosed with TC. Twenty-nine years later my son was diagnosed with TC. He underwent 3 x BEP and it will be 2 years post chemo this month. I will send you a PM. Dianne

[Margaret]

wow, all this has really been great information.

Couple of things:

Why do they say to have protected sex for 6-12 months following chemo if the chemo will not harm a child if we happen to get lucky and get pregnant??? I did not understand that part.

Also...I agree about the stress issue. We have a 7 year old son that really hung the moon in our eyes and I do not want to go through life feeling as if I missed out on something. He is enough for us, but another child would be wonderful too. So I figured we would just proceed through life like everyone else and if I turn up pregnant, then all the better. Being stressed, I have heard, just makes getting pregnant harder.

Last thing to add: we got pregnant on the first try with our son and tried a few years ago for another child. We tried for almost a year with no luck and later my dh was told about the TC. I have often wondered if things were starting to go wrong a few years back and that is the reason that we never got pregnant. Our doctor said he had the cancer at least a year before we discovered it.

Margaret

[dadmo]

Our oncologist said it was to protect the woman from receiving EP traces thru intercourse. Robert (who is very knowledgable) seems to think my onc. may have been mistaken so I'm at a bit of a loss also.

[Margaret]

Our oncologist said it was to protect the woman from receiving EP traces thru intercourse. Robert (who is very knowledgable) seems to think my onc. may have been mistaken so I'm at a bit of a loss also.

I know I am going to sound stupid, but what is "EP Traces"?

[mk6439]

I think Dadmo meant remnants of etoposide (E) and cisplatin (P). My impression -- and I don't know -- is that the docs advise you to wait a while because they aren't sure whether it will cause birth defects or not and they're playing it safe.

[Margaret]

No, I am not arguing with sloan, but it says in alot of information " use condoms for 48 hours after last treatment as some of the chemo may remain in the sperm for that time period". ( national institue of health)

Mass general says " It is crucial to not become pregnate DURING chemo treatment" and " men should use a condom for 3 days after chemo to protect their spouses from exposure to the drugs"

I saw one study, from a PHD who says" a sperm can live up to 3 months, so practice safe sex during this time"

TC-cancer says " 3 months"

American Cancer society says " Understand you are not contaminated:

" you cannot give cancer to your partner" You cannot pass chemotherapy or radiation to your partner"

National cancer institute says " use a condom for the first 48 hours after the last chemo treatment"

TCRC says" If you are recieveing chemotherapy, we STRONGLY recommend you use some sort of barrier contraception during and shortly after treatments. You do not want to pass any of those chemptherapy drugs on to your partner via semen! Generally speaking , we think it would be best to use a condom between the time chemptherapy starts and 2-3 days after the last dose of chemo" ( This is the one I would go by, as I know who reviews their medical information , and it is a great source !! !!!! )

Just in my experience, and have heard this issue before alot of times, the general consensus was 48-72 hours. That's what I have always heard, and that's what my Doctor told me. Most of the information I have seen is in that window, and as we all know , some say different things than others. I would be very comfortable, if it were me, to follow the TCRC guidelines, and have fun!!

My real concern is that you don't get frustrated if it takes a while to concieve. Just keep practicing. : )

have fun !

This information eased my mind. My husband stopped chemo in early November so we may be cutting it close, that is assuming he is fertile, which would be unlikely considering he just had the RPLND..but I am sure stranger things have happened. I am not going to worry but just enjoy my Healthy husband.

) M.

[Scott]

I hope I am not treading on ground that is too personal to ask here.

Not at all. If you can't ask here, where can you ask?

[dadmo]

Robert:
I didn't think you were arguing with sloan, but you really know your stuff and I'm still a bit perplexed. I guess all of the doc's just want to play it safe, which isn't a bad idea. They did advise my son to wear protection during his whole course of treatment which I thought was rediculous sinse he isn't even married.

[Margaret]

so, I take it he isn't retrograde ? that's good news.

I would follow the 3-4 day thing from TCRC, and not worry about it.

Have fun!!!

I hope he won't kill me for getting 'too personal' here, but in the first month post RPLND, he was having some retrograde. But in the last month, which would be month 2 post RPLND, we have had signs of fluid. So I am taking that as a great sign and also I figure if there is fluid, there could always be a chance for a child. Am I wrong to assume that?

Thanks all, you are all great!!

[Margaret]

I think Scott said, if you can't ask it here where can ya?

A question with a question. Was his RPLND bilateral?. I had a really great surgeon, who had performed many RPLND operations and was an expert at the nerve sparring surgery. Was in there 14 hours so he was very very careful... I had so many nodes involved and on both sides, so I unfortunately ended up retro. Want to talk about personal, I have to tell you onne of the first things I did when I got out of the hospital was to " test the system " . It is at this point I would like to tell everyone new, who may have , or be facing a RPLND, please don't try this at home. Learn from my mistake. This not a recommended activity to do with a zillion staples in your stomach. It hurt !! The results of the test was that I had a little bit of fluid , but no ejaculate. Eventually the "signs of fluid" went too. It was pretty cut and dry what had occured

Even if there is just signs of fluid now, does not mean that indeed someone is retrograde. It is a major shocked to the area and it is very easy to nick one. That being said, in alot of cases, nerves are very good about regenerating, or healing, but there is a chance that he may be retro.

Hence the question if it was a bilatteral RPLND . Bilatteral RPLND has a greater chance of retro than just one side

I have a really good paper that really breaks it all down in a very very good way, so if you give me a little bit, I can dig that out.

But be assured , if his is now, this soon after surgery, it could be a shock to his "system", or it is possible that a nerve was nicked, but it will regenerate. I have heard of people that thought they were, and basically forgot about it, all the sudden erupt like Old faithful. There are certain over the counter medications that can overide and help with ejaculation. Hopefully you banked sperm, but even if you did not, they can retrive sperm now from urine in the bladder.

In your case right now, I would say it is to early to tell. I will dig out that paper, and post it here. it is a good piece of infomation

I do know this, it would be a great time to practice, as the more these nerves or areas are usded, the more likely that nature will generate more nerves. They can grow. The body is an amazing thing

I would say th

He did have a bilatteral RPLND. His doctor was at Sloan Kettering and seemed to be one of the best, Shinfeld. As far as testing the waters..ha ha, I guess everyone does that and we tried as soon as he was able because we just wanted to know what was spared. But I agree that there is no way to tell if things will return to normal. I am not sure how you know what is retrograde or if fluid means that there is no retrograde. I guess we will take the pressure off ourselves and just let nature take its course. Nice to know what what ever happens, it seems like what I am learning is, that we would not cause damage to a child because of chemo. And that is a big weight lifted.

M

[Margaret]

Oh and no, we never had time to bank. fyi