Archive for the ‘Overresponders’ Category

When and how should I seek a second opinion?

Thursday, October 15th, 2009

Suppose you had a friend who was grappling with a cancer diagnosis and kept wondering whether his/her specialist had really considered all the possible treatment angles that might work. Suppose he or she had been receiving some treatment but there hadn’t really been any sign of progress. What would you advise? Probably a second opinion, right?

For some unknown reason, fertility patients seem to struggle with this notion that it’s somehow disloyal to seek a second opinion. Yes, it is awkward. But actually, it’s just good common sense if there’s any little voice inside your head saying “maybe there’s a better way …”  I know several women/couples who have switched specialist within the same clinic and have really agonised over how they are going to “break up with” their initial specialist. But the reality is this happens all the time, and people need to find the fit that’s right for them. My local clinic (FAA) actually makes that transition incredibly smooth and most of the drs are perfectly happy when it happens. [Actually, some may be relieved about getting rid of a “difficult” patient! ;)]

Even if you’re not actually switching specialists, it’s perfectly reasonable to seek out a second opinion if you want to. If you’re publicly funded you may have to pay for the second opinion consult, but that’s money well spent if it’ll give you peace of mind and/or some good ideas that can get you closer to building the family you want.

Remember, just as in any other profession, each individual specialist has certain diagnoses and treatments that they have a particular interest in and more experience in treating. Some gravitate toward the more straightforward cases (early 30s, no tubes, standard protocol, easy success); some specialise in particular issues (endometriosis, PCOS, thyroid problems); some are really passionate about taking on the really challenging cases (women over 40, poor responders, egg quality problems). It’s a good idea to ask around about who’s had success with cases like yours. And that’s a good place to start for a second opinion. Just think, women/couples in the States fly 5 hours from coast to coast seeking a second opinion; we are incredibly lucky that even the other end of the country isn’t that far away! And if travel is really a problem, you can often book a phone consult.

Over the years, one thing I’ve noticed is that the truly professional specialists I’ve spoken to have NO problem at all with my seeking a second opinion. They support my being proactive and are very happy to listen to any ideas I glean from those other consultations. They don’t let egos get in the way of my treatment. While working with my own specialist, I got a copy of all my notes and did a phone consult with a specialist in the States who’s considered the #1 go to guy for women with my particular diagnosis. My specialist in NZ was like nooooo problem – and was very open to the ideas I came back with. We did, of course, have a healthy debate about which of the ideas seemed to make the most sense in my case, but the main thing was that we had that discussion and we made some good decisions together about what to try next.

How do you know you should seek a second opinion?

Well, everyone’s different. For some people, it’s when they’ve just had a failed cycle, they can’t afford to do more than about one more, but the specialist is suggesting just going with the same again. For others, they’ve tried discussing other ideas with their specialist but feel like these aren’t being taken seriously or at least the reasons for not trying these things aren’t being adequately explained. For me, it was feeling like we’d already discussed and tried all the ideas we could think of together, so I needed a fresh perspective, a new source of ideas. Whatever the situation, if there’s a little voice in your head wondering whether you and your specialist have adequately explored all the possibilities, that’s a sign you might want a second opinion. It could just end up confirming what your current specialist is telling you, in which case that’s also useful because it eliminates doubts that you’re doing the right things.

If you think you might want to get a second opinion on your case, here’s what to do:

  1. Get a copy of your notes from the clinic so you know exactly what protocols you have tried already, any testing that’s been done, how you responded to treatment (including E2 levels, follicle sizes, the embryologist’s ratings of embryo quality, etc).
  2. If you can, make a 1-2-page bullet point summary of your history and any testing. This makes it a LOT easier for the new dr to get up to speed quickly on where you are at.
  3. Ask around (e.g. on the Everybody BB’s Infertility forum) to find out which drs at which clinics have had success with your particular diagnosis and history.
  4. Call that dr’s clinic and speak with his/her receptionist; ask for an in-person or phone appointment; ask where and how to send your summary/notes/file.
  5. You don’t have to formally tell your current specialist that you’re seeking a second opinion, but you’ll probably end up informing his/her nurse or receptionist when you request a copy of your file/notes. It’s a courtesy to mention it, but if it’s causing you anxiety then don’t force yourself to. The specialist will understand.
  6. If you are doing a consultation with someone who works at another clinic from your ‘home’ clinic and if you like what they are suggesting as a new plan, discuss with them whether it would be feasible/advisable to (a) ask your current specialist to follow a new protocol; (b) cycle at your local clinic but with the new specialist either calling the shots or providing advice to your own specialist; (c) travelling and doing the whole cycle at the new clinic; or (d) doing egg collection and transfer at the new clinic, but monitoring (ultrasound and bloodwork) locally. All of these options have been done around the country at one time or another.
  7. Don’t worry too much about having to persuade your current specialist to try something new – quite often the specialists will just get in touch with each other and work out how best to work together. Ask your ‘second opinion’ specialist what he/she thinks is the best way to handle this. The politics and the details of this shouldn’t be your problem – you are going through enough stress already!
  8. Don’t worry too much about the ‘disloyalty’ issue either. You have the right to expect specialists (and any healthcare provider, for that matter) to be professional about second opinions and NOT to make you feel guilty about seeking one out. If you find someone is not being particularly professional about it, that tells you more about them than it does about how you handled it. Your priority is to get a baby/family out of this, and their priority should be to help you achieve that dream. The specialists won’t be a part of your life forever, but your babies will!

IVF – the hurdles

Friday, October 2nd, 2009

So you’ve read the IVF manual and are all ready to start a cycle. What are some of the “wish I’d known that” snippets that veteran IVFers can share with you to help fill the knowledge gaps about what to expect? Well, one that comes up a lot is having a clear understanding of the not-so-straightforward hurdles involved in an IVF cycle. Here’s a typical comment from an IVFer …

When you start this journey you read the “ivf manual” and all sounds so easy – take some drugs, grow some eggs, have them collected, fertilised and put back in and voila! a baby. Ha!! They don’t tell you about the things that go wrong. Or the things that don’t work the way they should.

So, what are the main hurdles you face in an IVF cycle?

  1. Downregulation or precycle suppression might take longer – some gals do their downregulation blood tests after several days on Buserelin and find they need to keep downregulating for several more days before starting stims. If you’re on no precycle suppression or something very mild, you may find that you have a dominant follicle or a cyst at the beginning of your cycle and it may not be a good idea to proceed with stims.
  2. Assuming you get out of the starting blocks, your first hurdle is whether your ovaries will respond to the stims. This is assessed with blood tests (for estrogen, or E2) and an ultrasound. If you grow too few follicles or your E2 is too low or the follies don’t grow fast enough or your E2 doesn’t rise enough, the clinic is likely to cancel your cycle for poor response. The good news is that you may do better on another protocol – see an earlier post on IVF protocols for more information …
  3. Some women have the exact opposite problem to poor response – they overrespond. They grow too many follicles and their estrogen shoots dangerously high. In this case the clinic will either drop your dose of stims or stop stims altogether (this is called ‘coasting’). The blood tests continue, and if your E2 drops to a safe level they will let you trigger and go ahead with your egg collection; if the levels stay too high for too long, you may be cancelled for your own safety because you are at high risk of OHSS (ovarian hyperstimulation syndrome). Even if you make it to egg collection, you may be told it’ll be a freeze-all cycle – research shows that women at risk of OHSS are at higher risk if they do a fresh transfer and get pregnant.
  4. You make it as far as egg collection (a.k.a. ‘retrieval’) and have 10 follicles. That’ll be 10 eggs, right? Unfortunately not. Not all follicles yield an egg, and some women have major problems at this hurdle, getting only eggs from only 50% of their follicles, or sometimes fewer. [See Empty Follicle Syndrome] Others have a 100% strike rate just about every time. So, it’s just the luck of the draw. In any case, you shouldn’t expect to get an egg from any follicle that was smaller than about 15-16mm at trigger, and you shouldn’t expect all your mature (large) follicles to yield eggs.
  5. Yay, we got six eggs!! That’ll be six embryos, right? If you’re lucky, yes, but there are more hurdles here too. First, it’s possible not all of your eggs were mature. Only the mature ones can potentially fertilise. And not all of them do. Some couples get 100% fertilisation just about every time, and others get a very low %. Some also get abnormal fertilisation, such as when two sperm enter one egg. ICSI can improve fertilisation rates if there are sperm issues or if the eggs have hard ‘zona’ (eggshells).
  6. The day after egg collection, the embryologist will usually call you to let you know how many of your eggs were mature and how many have fertilised normally. From there, you are in a waiting game to find out how many of those embryos will make it to Day 3, and how well they divide. Some may ‘arrest’ (stop growing) along the way, some will divide more slowly (or quickly) than is optimal. The best possible result is to have 4-cell embryos on Day 2 and 8-cell embryos on Day 3. The survival rate from fertilisation to Day 3 is not usually too bad.
  7. If you’re taking your fresh or leftover embryos from Day 3 to blastocyst stage, there is a VERY high die-off rate at this point. Before deciding to do this, I strongly recommend you read the post on this issue (2-day, 3-day or blast transfer?), discuss it with your doctor, nurse and embryologist, and make your wishes crystal clear.
  8. Once the embryos are transferred back to the uterus, you are in the dreaded 2ww (2-week wait). Arrrghh! Enjoy the first week because you are going to drive yourself insane in the second week obsessing about every twinge. 🙂

Well, those are the main hurdles for an IVF cycle. The bad news is that if you DO get a BFP there’s a whole other set of even more hair-raising hurdles to clear! But we’ll save that for another post …