Interesting Article on PGS

JamieH2000

Hi Ladies, you may have seen this article posted around if you are in any facebook groups, but I found it very interesting. Its a long read, but worth it if you are considering PGS.

https://www.thecut.com/2017/09/ivf-abnormal-embryos-new-last-chance.html

dragonette505

Ive been following the research on this too... no guarantee of course, but I think if you are willing to play dice, it might be worth the risk. I have discarded plenty of embies (many of which were highly rated at the time) because they were pgs tested abnormal. When I went for a second opinion consultation at CHR they told me (in so many words not bluntly)that I probably threw away some that might have developed normally. (Gleicher was the doc who did my consult)obviously, again, who knows, but I feel very betrayed at the thought that years ago when I had better egg quality and more high rated embies, I threw them away.....
its heartbreaking. I no longer suggest it to older women because we could be throwing away our only chances before heading to DE if that's an option

adirat

I hope there's more research coming out soon about the reliability of the PGS. It is quite concerning and we are not sure yet what we will do about embryos that come back with abnormal results.

I feel so conflicted about this "implant anyway" being the advice, though... I also saw this article linked from NYMag yesterday and I found it shocking how blase people were about having a late first tri CVS and possible TFMR. That is...that is not easy to say the least, so saying to people "pop those embryos in and let's see what happens, just make sure you're prepared to terminate" I don't think is something doctors should be taking lightly? TFMR is devastating and earth-shattering even when you are 100% confident you're making the right decision. 

dragonette505

@adirat I don't think its easy for anyone. I know I am taking a chance using my body as the test, but if I were just having sex with my husband, id have the same chances. And I think that's basically what they are saying.... What I got from my consultation was something I suspected anyway... the science is just not ready yet and likely tons of potentially viable babies are being thrown away. I don't think anyone makes the choice easy, and if you are young and maybe have many options, its great because it helps you decide the best possible embryos to transfer. But if you are someone like me and many of the women ive talked to and all your embies come back abnormal again and again, this doesn't seem so extreme. Its a tiny chance to maybe have a child. Ive been to about 5 clinics in either cycling or consults (for second and third opinions) and all of them said the only value of pgs is for women with normal/high ovarian function. Several places have told me pgs statistically reduces the chances for women with dor. They are not even testing the part that becomes the baby, so its still really dicey. Add to that the self correcting possibility....
some women retest and get different results, clearly some women are having healthy babies. I don't know.. I feel 0% conflict when I think of the lucky woman in the article...
even if it never works for me ive learned a huge lesson about emerging technologies....

adirat

Not at all @dragonette505. I support every woman's choice and I completely understand taking the chance. It's the doctors' attitude that rubbed me the wrong way. 

emmasemm

@jamieh2000 thanks a lot for the link, it's really thought provoking and also in line with some other studies I've been reading and some comments on various podcasts in the last weeks.

Here in Germany PGS is not normal at all (but more from conservative ethical grounds) and because they like to only adopt proven technologies. E.g. Germany has one of the best 4G mobile phone networks because everyone was so conservative when mobile phones first came on the market they waited to introduce the network, and by then more mature technology was ready. Great when you benefit at the end, but in the meantime you can be behind...

As someone with DOR and AMA I'm with @dragonette505
If there is even a small chance of success I feel I need to run with it. Let's see if I change my mind after 5 cycles... 
Also as PGS is not available for me domestically, then the decision is somewhat out of my hands for now. 

However when genetic issues are know in parents/siblings/children then here in Germany they will approve PGD which is a different technological process. I'm not aware of research showing statistical evidence of the same mosaicism issues with gene testing. Of course it depends on the specific probe.
@adirat I think there you are our resident expert and in your position I would certainly want PGD

dragonette505

adirat said:

Not at all @dragonette505. I support every woman's choice and I completely understand taking the chance. It's the doctors' attitude that rubbed me the wrong way. 

I'm not sure if its editing, but when I consulted with these doctors there was nothing casual about the idea... I do think there is some degree of experimentation that happens on patients (like it or not) but in this one instance, I feel like it is actually reversing the impact of potentially negative experiments on patients. These guys took it seriously and knew it was potentially risky. They wanted women to know the risks but I felt their theory was sound.

prudence9-2

@JamieH2000 thanks for the link. Definitely makes me wonder about my abnormal embryos... 

dragonette505

@emmasemm If I was young or had a normal ovarian reserve, id totally be doing pgs.... some people will end up with 20 or 30 frozen embies! Id totally do it then. Also if our Counsyl genetics testing had revealed any potential issues or if we had family history of something, id be testing.
My guess is if I were doing DE id also forego testing, just assuming there shouldn't be any problems

liljoy-2

I was just about to post it too. A patient of Dr Vidali just had success with an abnormal implanted embryo.
My embryos too when re-tested came back normal. I don't know what to do with the abnormal ones now...don't want them discarded. 
This is heartbreaking. 

[Deleted User]

The discarding part, and not having the option to have them retested in the future, is a big part of what got me.  Test them, they're abnormal, fine, start with the normies, but maybe we will have developed new methods in 5-10 years that would be worth exoloring on the ones that originally tested abnormal???  The fact that my doctor said flat out they would not keep them was hard to hear.  She also wanted me to understand that if an embies tested positive for Downs - potentially a viable little lives - they would not be kept.  No say in the matter.  That's the kind of thing that for me, made it tough to get on board with pgs.  And for DH, he was more concerned with just tinkering with them in the first place and possibly doing damage, and then - without necessarily doing any research tho - the fallability/reliability of the testing, too.

And here we are sure enough with just three precious little frosties from my first cycle, far cry from 24 or 30 embies or something crazy no one could possibly do that many FETs to womb-test them all!  So in our case, so far, I do feel good about our decision to skip it.  I will plan to come back and read the article when I have a little more time... thanks for sharing it!

@emmasemm  I find that so interesting about the conservative way of adopting new treatment technologies in Germany.  I am actually amazed they don't do it there, only bc it is really mainstream here!  But I do think it's also a part of modern German culture to be intentionally gun-shy about anything that could go down a slippery slope... :/

Irisheyes81

I thought I would throw in my two cents even though I haven't read the whole article yet. We just got our PGS results (we had 5 that made it to freeze and three were genetically 'normal'). I cried and cried knowing those two were gone. One had Turner's syndrome and an extra chromosome 11 and the other had Kleinfelters syndrome and was missing one of chromosome 22. They were both A rated embryos that froze on day 5 (two more took until day 6). The lower 'rated' embryos were genetically normal. The doctor said the diseases are rare for a reason and the most likely outcome would have been a failed transfer. I feel like our doctor encouraged us to do PGS, which was easy before I actually had real embryos. I am so thankful and also sad at the same time. I don't know if anyone else has done the testing and felt the way I do. I honestly felt worse when the "discarded" 4 embryos that made it to day 5 because they weren't high enough quality. Their only answer to that is they didn't think they would survive freezing but they made it that far! This is a really long response. Ha! I think all these decisions are difficult. 

dragonette505

There's no right answer, I think. But if you're old, or only have a few embies and you are willing to give them a chance understanding the risk then this is important to know.

emmasemm

dragonette505 said:

There's no right answer, I think. But if you're old, or only have a few embies and you are willing to give them a chance understanding the risk then this is important to know.

This is for sure a tough decision - but being in the same boat as @dragonette505 I feel that I need to give every embies I get a chance for now. I mean when we have 1 or 2 embies we will even transfer on day 2 or 3 if they don't look absolutely confident to make it to day 5. Anything to take a chance. If we have 20 then selecting the best first would seem very sensible.

I think I will ***TW*** the rest just in case as this is very sensitive stuff.

@Irisheyes81 - like @dragonette505 said if there was a history of chromosomal abnormalities I would have to re think, but there again I would probably tend more towards PGD than PGS. Also your PGS results are interesting. The article didn't go into that much detail, but what I understand is that the mosaicism and ability to correct is thought to be less common with the "known syndromes" - i.e. Those that can potentially make it to full term (but then have complex issues or a life limiting prognosis) are more likely (though from research populations not yet statistically significant) to come back with the same results from PGS if done a second or third time (or after being "discarded" if donated for research they can do a more thorough testing). I mean I'm not a cutting edge researcher, so it could be the research they've done there is also flawed and I'm not in a position to judge properly, but it feels like it has some logic to it.

@businesswife yes the whole conservative approach here is sometimes quite a shock until you think back to the not so distant history, which most Germans are still acutely embarrassed about and aware of. Even things that are allowed in Europe as a whole, aren't always practiced or are extremely strictly controlled. For PGS or PGD you need to go through a formal approval process with the national authority which takes in itself months.
Here you are legally not allowed to know the gender until after 12 weeks unless you have the history of genetic issues (after which time it becomes an induction not an abortion and thus medically more complicated, let alone emotionally). And there are complex legal issues related to terminating after 12 weeks for disabilities. From the more limited research I've done here it is again quite legally challenging to terminate unless there is a risk to the life of the mother and/or the baby (ie a risk to health is often not seen as reason enough, it mostly needs to be risk to life).

Also @irisheyes81 my clinic (and I'm not sure if it's the norm) will not "discard" any embies unless they have not developed for minimum 12 hours or have officially arrested. If you want to freeze and they haven't "arrested" then my clinic has to try according to the legal paperwork. I guess this leads to some patients freezing ones that will not make it through the freeze/unfreeze. But again it's the more "conservative" approach. Apparently the freezing part is the toughest on the embies - if they successfully freeze then more than 90% will come out of the freeze successfully. Strange process - it feels like the other way around with food!
And if you've frozen the right to discard seems to be a whole other legal minefield here. 

I guess making the rules too restrictive inhibits progress, but making the rules too relaxed might mean things are done without understanding the full consequences.
That is the dilemma with medical research and progress... and with IVF/ICSI even after 39 years I still feel we are all taking part in research as every time they and we learn something more... 

(PS I know when the first IVF baby Louise Brown was born as she was born just 6 weeks before me and so every year just before my birthday they talk about her in the news in the UK)

Oh and sorry for the essay - being invested emotionally in this process, but also looking from a scientific point of view is challenging yet interesting and it really helps me to have these conversations with you other super smart ladies, thank you

dragonette505

@emmasemm as a lover of science and someone who is also deeply invested (gut-wrenchingly invested) i could probably write 5 pages of back and forth with myself about the subject! 

tinjp78

Hmmm, after reading your posts and thinking what to say, here is what I came up with...

PGS is not allowed here in Japan.

                 

tinjp78

Oh and one more... 1 in 19 child in Japan now is from IVF.

tinjp78

But now I asked my DH (a Japanese) if he had a chance to have an embryo PGS tested, would he do it? He said 'yes' but still half hearted because if the technician's skill is not so good, the cell might get damaged.

Whew, sorry for my fragmented replies, I just can't stop thinking of this. 

Irisheyes81

@emmasemm You are really smart and I really appreciate you both educated and also passionate response.  I would say after this process, I wish I would have 'argued' a little bit more.  The Reproductive Endocrinologist and Embryologist both told me they have their "way" and like to do ICSI with PGS as it has resulted in the most live births. 
When they said they have an A-C grading and all C's are discarded, I could have asked to save those embryos.  They specifically told me they grew but they don't believe they would have survived freeze.  They didn't try. I also could have elected to forgo PGS testing.  When I got the results, they did say the Turners and Kleinfelders alone wouldn't have resulted in discarding those embryos.  They said that the missing and extra chromosome would not result in a live birth.  That's obviously not true because there are children in the world with an extra, parts and missing chromosomes.  Quality of life might not be great but they have resulted in live birth.  I don't regret anything in this process because at this point, I can't.  However, I wish there would have been a thread like this for me to read before!  

dragonette505

tinjp78 said:

Hmmm, after reading your posts and thinking what to say, here is what I came up with...

PGS is not allowed here in Japan.

                 

That's interesting because I know Japan is generally in the forefront of IVF technologies and I read about so many more studies that happen over there.

tinjp78

@dragonette505 Yes, they use state of the art equipment/technology here and hospital care is great too but about PGS, Japan is still holding on to its conservative stand. I kind of left out some other info from that last post,  PGS is however allowed in specific cases like when one or both of the couple doing IVF has a confirmed genetic abnormality or after 4 IVF failures but the cost is unbelieveably high. 

marioana99

When I got the rejection letter from the insurance for PGS, the reason was that the method is not scientifically accurate. I thought they were crazy, but I guess they were right this time...

dragonette505

@tinjp78 I feel like if a couple has a known detrimental variant, PGS should totally be an option. A girl I know on Instagram has one child with sickle cell and they are trying for another and obv are using only pgs normal since both parents are carriers and have a high likelihood of this happening again. Honestly..if I made more embies, id do it too!

cseley321

My old insurance would cover PGS only if one or both parents were carriers for genetic issues. My current insurance doesn't cover pgs at all though. My doctor is pushing for it, but we are waiting until we finish trying with our 2 remaining embryos