Cysts (sigh), what is Dr. Ch.eck's protocol?July 30 2012 at 6:42 AM
|Jess (no login)|
Went for my day 2 bloodwork and u/s today. The tech found 2 cysts, one on my RT (which she said was "not so bad," and seemed to think would shrink with my period), and one "big one" on my Left (I think I saw on the machine either 22mm or 26mm).
I knew cysts were a definite possibility since my last cycle was cancelled while 9 follies were growing. I took some Lupron last week that was supposed to prevent the cysts- and it probably did help some (I'm sure there would have been more than 2 if not for the Lupron), but obviously it didn't completely stop them.
The tech said that at their clinic (I'm doing OOT monitoring), the cycle would probably be cancelled- but every place is different. This is my last IVF try (for a while, at least) before going back to natural, so just wondering if anyone had cyst experience with Dr. Ch.eck's office? Do they usually cancel? Try to shrink it with Ganerelix or BCPs? (I had 6 cysts during a previous cycle at Co.rnell and they successfully got rid of them with 3 shots of the ganerlix and 5 days of BCPs- and then I started on the stims).
Any experience or advice would be appreciated! Thanks so much!
Uch!! please tell me I'm not the only one with this OOT problem
|July 30 2012, 4:49 PM |
So just to update, (the mean) nurse from Dr. Ch.eck's office called me a few hours ago, skipped the "Hello," and just went straight to "Why did you tell your OOT clinic to only take your estradiol level if you're on CD2?" (For some reason, this was the only # faxed over). Um, what? I reassured her that I never ever told them to do that- why would I tell them that? The only thing I did was leave a message at Co.ooper on Friday telling them I would prob have to go for blood/ultrasound on Monday so can they please fax the orders to my out of town clinic. I told the nurse I'm sure they just did whatever was on the order sheet. She then backed down (a little) and said- "well then I'm sure the rest of the bloodwork will come in tomorrow, so you'll get your instructions then."
OK, this makes NO sense to me! Why would my OOT clinic only process all 4 blood levels- but only send 1 today and the other 3 tomorrow?? I have a feeling Co.oper never sent my orders or screwed up my orders and that is the problem. I asked the nurse if I should go back tomorrow (since it will still be CD3) and she said "No, definitely not." I don't get why not. I think I will go tomorrow to see if the tech can help me sort it out. If it wasn't in the orders, I obviously need to try and get it done again tomorrow.
I asked her what the story was with my cysts and she said- "They're still there." (Ohhhh, they are? Because I thought they miraculously vanished since this morning). When I pushed her on it, she said the doctor needs all the bloodwork to make a decision. She wouldn't even tell me what my E2 # was (which I thought is the crucial # when it comes to making cyst decisions).
Am I the only one that this keeps happening to? They're constantly losing my stuff, not being able to read the faxes, etc etc. How do you guys deal with this?? I feel like my fate is in the hands of mean, inept people! Whyyy can't they just get it together?? Uch! I'm not sure it's worth cycling with them
I had some problems, too....
|July 30 2012, 4:57 PM |
And I was quick to blame Co-opers, too, but after talking with the local RE - they've admitted they've made some mistakes.
I won't take the credit, but they've changed their practices since we've started working with them for monitoring. It's gotten easier.
Talk with the local folks and see what they are doing...
I had cysts all the time
|July 31 2012, 5:42 AM |
And with Coo.per they always either just cancelled me and then would wait to see if they were still there on CD3 next cycle. If they were then they'd put me on BC. I wasn't doing IVF though. I always got incredibly frustrated because I was OOT as well, and just dealing with them is a job in itself! And the BC never worked at getting rid of the cysts, or suppressing me for that matter. I would tell the nurse that and I don't think they ever made note of it because the next time I had a cyst they'd put me on BC, even though I told them it didn't work last time. Whatever happens, don't let that nurse bully you and get a little stern with her. Ask her leading questions, like "Should I start Lupron (or whatever) now to take care of these cysts?" instead of "what about these cysts?" I don't cycle anymore but towards the end I started taking more of that approach and it really helped things.
As for the screw up with the bloodwork, I agree with what Margie said - I was always quick to blame Co.oper because it seems like they don't know what's going on half the time but there were times when it was a lab error or local RE's office error.
Thanks- you guys were right-
|July 31 2012, 1:13 PM |
It actually wasn't Co.oper's fault- the tech at my local clinic only circled E2 (she says at their place they only test for E2 at baseline (so weird)), so she took my blood again today (day 3) and they tested everything. I felt badly for automatically blaming Co.oper. I guess it's just hard to coordinate the 2 places.
Anyway, I called my local place to get my results. My E2 is 63 (FSH is 8.8, LH is 2.2, Progesterone is 0.3). I'm kinda on the fence with the E2 # -- I don't know if it's a little high bc the cyst is estrogen producing, OR if it's just higher (maybe from the stims last cycle?) and the cyst is nonfunctional. I wonder how the nurses will know...? Maybe they have a cutoff # that indicates whether it's functional or not? My E2 level last cycle was 35, so it's def higher for me. Anyone know what the E2 # usually is for a functional cyst?
I'm hoping it's not producing estrogen and we can try and shrink it and then continue with the cycle since this is my 1 and only shot at IVF (for a while, anyway). It seems that Co.oper likes to cancel though. Fortunately, I happen to be on the callback list for Dr. Ch.eck tonight so it's good timing to get to talk to him. Maybe I can convince him to try and let me shrink it with meds I already have at home.
Thanks again everyone for the input and advice. Ya'll are such a great resource!!
A thought about the cyst....
|July 31 2012, 1:45 PM |
Do you really want to move forward with the cycle if you have a cyst? If this is your only one shot at the IVF cycle - don't you want to say "we gave it our all?"
I know from previous experience that some REs do not like to deal with cysts because it can make a mess of things at retrieval. They don't have to cancel - especially if it's a non-functional cyst, but it can make things challenging.
|July 31 2012, 4:13 PM |
That's interesting, I've never heard of that before. The other cycle where I had 6 cysts was an IUI so I guess that's why the RE never mentioned it.
But can it still mess up a retrieval if it shrinks down? I would not want to go through with it as it is- I would want to try taking ganerelix or BCPs to shrink it down to a negligble size (which is what we did with the 6 cysts in my IUI cycle).
I will definitely talk to Dr. Ch.eck about it tonight. The nurses didn't even give me a callback...when I called the front desk to find out if anyone was ever planning on calling me she said that the nurse said Dr. Ch.eck would just discuss it with me bc they saw that I'm on his callback list anyway.
Is that weird? Makes me a little nervous...
Depends on the cyst and experience of the RE....
|July 31 2012, 4:39 PM |
It really depends on the cyst. If it's near a follicle - it might be more difficult.
When I had my IVF a few years ago, the RE commented that he couldn't get all of the follicles because of the cyst. And he was an experienced RE...
I think the other thing that concerns me is the effect of BCPs or even Ganerelix to your cycle. BCPs have been known to suppress a lot of women with high FSH. Do you want to risk taking BCPs on the same cycle as your IVF? I'm not sure what Ganerelix would do in the beginning of the cycle. Again - that's why I asked if it's something you wanted to do...
Anyway - good that you're talking to Ch.eck tonight...you'll get some answers...
|August 1 2012, 11:00 AM |
I am curious to know what info you got...i currently have a huge cyst its 46mm and I am scared it will take a long time to go away. I was always able to start cycles with a cyst as ling as e2 was under 60 at my old clinic so you are borderline...but not sure what coopers cut off is. Very curious to see what the told you!
|August 1 2012, 12:36 PM |
Thanks for your response. I spoke to Dr. Ch.eck last night and he wants me to repeat b/w and ultrasound tomorrow to see if the e2 is going up or down, and to check if the cyst is getting bigger or shrinking. I guess I didn't see the screen correctly, bc he said it's measuring 20mm (not 22 or 26). I also misheard the nurse at my OOT clinic- my progesterone # was 2.3, not 0.3, so Dr. Ch.eck said that even though I have my period, my P4 levels haven't come down enough yet for him to make an informed decision. He said maybe when the progesterone goes down, the e2 will also drop. He feels that the bloodwork tomorrow will be a more accurate day 2/3 baseline inidicator of what's going on (even though it will technically be day 4 or 5 (my period started Sunday evening)).
Soo, just more waiting. He said if the e2 is down, and the cyst did not get bigger- he won't even try to shrink it- he thinks it will just go down on its own and is of no concern to the cycle (and I can begin stims). If the e2 is up and the cyst is bigger- obviously it's functional- and the cycle is cancelled, nothing else to do. I guess I don't have that much longer to find out!
I'll try and update tomorrow.