Preparing for appointment

Tomorrow the hospital is finally breaking the month and a half of keeping me in the dark about my cyst. Im preparing a list of questions I so desperately need answered, just in case they point a needle at me and my brain shuts down.

Im 23 years, have had the cyst for a year, but was not diagnosed until august. I have not been told anything about my case and am worried sick, obviously.

Here is what I got so far:
Get the results of my blood tests
Get the written reports from the US and CT scans
Ask about my kidneys, got scanned during US
Find out how many cysts I have, size, left/right ovary, simple/complex
Surgery, laparopscopy (unlikely) vs laparotomy (bikini vs midline), how it would affect me long term.
Recovery, what to expect, common complications (you ladies appear not to be told enough about this)
Drugs for my needlephobia
How to prevent future cysts, diet, p pills (oddly I got my cyst while on the p pill)

Did I miss something?

[asdf125]

Ok so I got some details about my cyst.
It measures 21x17x110 cm on my left ovary and a 3 cm cyst on my right ovary.
The big one is multi septated, probably complex, probably filled with mucous, but no solids (cystadenoma). It is pushing some things about and causing some things to swell, but no more than a pregnancy would. They reckon Ill loose my left ovary but Ive told them to save anything they can.
The small cyst on the right might be gone by the time I have surgery, if not they will either drain it or remove it.

Tumour markers:
Ca-125: 15 (normal range >35)
C19.9: 1 (normal >40)
CEA: 1.7 (normal >2.5)
AFP: >1 (normal >1 for non pregnant women)
No worries there by the looks of it.

[Nina0108]

Way to advocate for yourself! What kind of surgery will you be getting and what plans to be done during surgery?(Since they recommend ovary removal but you disagree)

[asdf125]

Open laparotomy, but Ive opted for bikini incision despite them reckomending a midline incision. I forgot to ask about laparoscopy, but since they dont like possibly having to drain it to get it out of a bikini incision, I cant see them thinking that would be a good idea..!
Obviously Ill loose my left ovary if they cant locate it, but if the cyst and ovary is seperated, I want to keep the ovary, if it is semi attatched, Im pushing to keep part of the ovary. Due to the cyst most likely being filled with mucous, my doctor is not happy about that, but I want to keep as much as I can in case something ever happens my right ovary.

The first doctor I seen yesterday said the left fallopian tube can catch an egg from the right ovary, sounds freaky to me, but if that is the case Ill see if I can keep the tube even if I loose the ovary, assuming the tube is healthy. I have no children yet.

Since they know what my problem is, they are only planning to drain or remove the small cyst if it is still there, check if right ovary is healthy, remove the big cyst and save or remove the left ovary. Samples will be sent to the lab. I dont know how they would do it step by step though.

[misspinkangel]

Have you  had your date for surgery yet, or any indication of when it might be? Still waiting for my date :-( darn NHS!

[Nina0108]

What surgery will you be getting and for what reason? What are your pre/post surgery plans (recovery/work) I apologize if you've already answered these questions, I'm new to this forum. :)

[misspinkangel]

Hi, They found a cyst on my left ovary during my 20 week pregnancy scan last year (see previous post multi-septated cyst in pregnancy).  Anyway after  a long battle with my gp i finally got a referral to a gyne, who said it won't go away and will probably keep growing till it bursts or twists, so I've been told i need surgery.  I had my pre-op assessment 4 weeks ago and was told operation would be in 2-9 weeks, but I haven't heard anything yet.  Just a bit worried about how much notice their gonna give me as I have 3 children and work to organise! hoping it will just be a laparoscopy, but it may have to be converted to open surgery depending on what they find. Anyone else's experience with waiting times on the NHS would be greatly appreciated!

[asdf125]

I think most of my delay was caused by the surgeon being on holiday..! I was diagnosed in late august, all blood tests and scans were done in august (see Large Ovarian Cyst if you want to read more about my case). I havent had a date yet, but they were looking at 27/10 or 10/11 and promising me it would be sorted soon. Waiting for a dreaded phonecall.. I dont want surgery lol!

Dear misspinkangel should consider changing GP, hers sounds a bit useless..

[Nina0108]

Thanks for the insight ladies! I hope both of your surgeries go smoothly.

[misspinkangel]

Your not wrong there, my gp is rubbish! still no date, my poor postman practically gets mugged by me every morning for the post!

[asdf125]

Ladies, Im wondering if my surgeon wants to cut corners or wants to remove more than she needs to to avoid spilling the mucus. I want to keep as much as possible obviously.

I just got a letter about having surgery the 7/11 (pre assesment date is 10/11 LOL! will have to change that!)
It says I will be having the following procedure:
Laparotomy and unilateral salpingoopherectomy

To anyone not knowing:
Laparotomy is open surgery (bikini cut as I refuse midline)
Unilateral means it only affects one/one side
Salping is the fallopian tube
Oophorectomy is removal of ovary

So they want to remove one ovary and tube..

Does all letters say that and then they later try to save bits and pieces or would I agree to "too much" if I agreed to that? I wont be signing anything for a while, so I reckon I have time to rescearch a bit.

Same time I guess I cant tie ther hands and say only to do unilateral oopherectomy in case the tube is buggered? They told me it is highly unlikely for a cyst this size to be on the tube, so I was hoping I could keep it.
According to some site, my type of cyst (mucinous cystadenoma) is "often attatched to an ovary by a stalk rather than grow within the ovary itself ". I know there is exceptions, but shouldnt that mean that it might be possible to save the ovary? (ovarian cystectomy surgery)

Im guessing I can only tell them "if A do this, if B do that" as noone will really know until they chop me in half..

Am I panicking over nothing? My surgeon is really really pushing to do things I dont want (midline incision, take the whole ovary) because of the mucus. I really hope it isnt lazyness..

Any thoughts? What did your letters say?

[asdf125]

I will be pre assesed for the anesthetics on the morning of surgery. They dont have time to fit be in for a seperate appointment. Ill be chatting people and signing stuff before the surgery anyway so I guess they will have time for that as well.

I really need a shower soon, cold sweats hasnt stopped since I got that letter. Should be some fun days leading up to surgery! :-S

[Debtrap]

I don't know if it's too late in the game, i would exolore my surgery options and get a second opinion... but after talking to my surgeon, he said exactly what u said alot of doctors cut corners or do not have the skill to do a less invasive surgery.,,,even if laparscopy is out of the question you might have someone else who is more willing to spare your reproductive parts..you are way too young...honestly There is no harm in going for a second or third opinion...good luck :) debbie

[asdf125]

My surgeon is the lead something over the whole area as far as I have found out. They are doing this surgery locally though, not in a much larger hospital an hour further away. Apparently Im not complicated enough, or at least my cyst isnt, I probably am! I dont even know what kind of surgeons and options I would have up there.
She seemed to think it was much more realistic to save parts if it was a demoid. She is worrying about the mucus causing something called Pseudomyxoma Peritonei, although I have yet to find out exactly what the difference is between an appendix cancer causing that and leaking mucus from an ovarian cyst. Both gives you mucus in the abdominal cavity, although I bet a ruptured appendix leak more than a more or less controlled draining of an ovarian cyst. I have absolutely no idea if the types of mucus are the same either, or if cancerous vs benign makes the whole difference.
Surely, once the cyst is drained completely, it shouldnt be able to leak any more when seperating it from the ovary..? At least that is my theory.

Of course I could tie her hands and only allow a cystectomy, but Im not sure it would be wise/she would agree to do the surgery.

Unfortunately Ill not see the surgeon until the day of the surgery, but I guess I could make phone calls.. Ive got 5 work days to call I guess.

[Debtrap]

Maybe your case is a little more complicated than I thought...I just find through experience with this and other surgeries each doctor always has a different technique or way of doing things...I  don't know if you have plans of having kids in the future but u still can conceive with one ovary and tube....anyways I do wish you the best of luck iand a speedy recovery...keep us posted :) debbie

[asdf125]

Fertility isnt my main concern. Hormones and whatever all they play a part in is.
Children.. well yeah I do want one or two I guess. Preferably if the stork comes out of retirement, or once I stop thinking of a pregnancy as a parasite and start thinking it is something wonderful!! I must admit I would rather be pregnant right now than have a cyst though.

Of course Im also hoping my needle phobia made me shake so much the CT scan made it look like mucus, it might just be fluid.. Wishful thinking, I know. Noone mentioned blurry results though..

[misspinkangel]

Good luck for tomorrow, I hope all goes well.  Looking forward to an update on how it all goes and your recovery :-) Still waiting for my date, although have been told the primary target date is 6th December, my sons birthday terrific!!

[asdf125]

Thanks misspinkangel, Ill need it. Im so nervous right now, surprised I havent had a panic attack yet. I just want to stay home tomorrow :-S

I hope you get your date soon. The 6th would be annoying but at least you will be home for Christmas.

[JessRae]

Good luck tomorrow!! I hope everything goes well and looking forward to hear how things went and how your recovery goes after.

You can do it, try to do anything you can to keep you relaxed today and tonight, it'll be okay! I dont blame you for being nervous about it and wanting to stay home tomorrow. I know I hated the waiting for surgery(both times, first time I was an add on, had to wait 3 days before they finally did it, second time it was planned, had a date, got bumped, for a week later after I fought with surgical booking.) but some days I thought it wouldve just been soo much easier if it was emergency surgery vs sitting and waiting, reading up things etc knowing whats to come.

Relax, have a bath if you can and enjoy them(last one you'll be able to have til incision is healed), read a book, have an amazing dinner, and just enjoy the day as it was any other as best you can. Hopefully you can get some sleep tonight to be rested for the big day tomorrow. ( Or do what I did and spend the day cleaning your house to have it ready for when you got home, and have an incredibly long shower at the end of the night to relax before bed lol)

Will be thinking of you and look forward to the updates!

[asdf125]

Havent been able to enjoy dinners much the last months, stomach capacity is badly restricted. Been trying to do normal things, which isnt enough to keep my mind off things .. Only broke down once so far, but I expect it to hit me tomorrow or when trying to go to sleep.
Will be having a long shower in the morning, probably needs dragged out of it. I have some time to kill, need to ring the hospital and have breakfast before 7 am and then be in the hospital at 10 am. Surgery is in the afternoon sometime so it will be a really really long day. Afraid Ill be going in with a head start on the constipation.. :-S

I agree with the emergency surgery Jess, it has crossed my mind as well. It would make it less complicated and much less stressful.

Ill update you ladies when Im home again, thanks so much for your support

[Debtrap]

Good luck...I know it's nervewracking but your surgery will be over before you know it....I was nervous too but it's amazing once they put you to sleep it feels like your out for a minute and then it's all over...and then you can rest up and take it easy for a few days...best wishes for a speedy recovery!!! Deb

[asdf125]

So, Im back, finally.

Monday, Day 1 (7th): Got knocked out with some tablets for a few hours before surgery and knocked out with gas for surgery in the afternoon. Was ok up until they gave me the mask on, then panicked a bit, holding my breath etc. One breath I got dizzy, next I was out.
Next I knew I woke up in complete agony. Tummy hurt so much. Painkillers finally set in after who knows how long. Apparently this isnt a normal reaction to anestethics ladies, so dont worry too much. Everyone else says it is a bliss until it wears off properly the next morning.
Belly was really swollen.. thought it odd but figured it must be ok. Was sick all night.
Tuesday, Day 2: Felt terrible/struggled to keep food down. Was told the cyst hadnt been removed. It had grown more than even the surgeon had expected (she had been happy trying bikini cut, but refused draining, which I then had agreed to avoid). Due to me being so unhappy with midline, she wasnt able to go ahead with it despite what her and my bf wanted for me, she didnt feel she had the nessesary concent. Had to close me up with cyst still in me. Was told she was hoping to squeeze me in Friday for midline (pubic bone to top of cyst which is quite close to ribs), hoping no real emergencies came up.
Used bedpan to urinate, too much pain and light head to use the commode (toilet they could move over to my bedside). Managed to empty my bladder enough by evening time to avoid the catheter.
Wednesday, Day 3. Much the same. Felt terrible. Struggled to eat/keep food in me. Significantly increased pulse.
Thursday, Day 4. Managed to go to the real toilet in the very early hours. Still felt terrible. Pulse never dropping much below 120. Nurse worried about my hemoglobin and ordered night staff to do tests.
Friday, Day 5 & 1.2: Bloodtests done just after midnight. Hemoglobin found to be 5.5. Recieved 2 units of blood before 4 am. Turned into a real emergency as bleeding needed to be stopped. Wasnt worried about surgery, just wanted it over with. IV was already there since transfusion, was put under using it.Gave surgeon free hands, but still hoped to save some ovarian tissue.
Was reckomended an epidural because I had woke up in so much pain, but couldnt face it and declined.
Surgery was significantly longer, maybe two hours. Hemoglobin was 8.2 before surgery, dropped to 6 and raised to 8 thanks to another unit of blood.. Lost tube (stretchec) and ovary (couldnt find healthy tissue). Weight 2.4 kg. Woke up in high dependency ward. Agony in midline, bikini line and urinary tract - woke up with catheter and the bikini line had to be reclosed as the pressure was too much for it when the midline was done. Drains in either side of bikini incision. Pain eventually came under control, wasnt allowed to drink anything due to previous sickness.
Saturday, Day 2.2: Felt reasonably good for the first time. So hungry! Ate soup and jelly - and it stayed down. Sat out for a while in the morning. 1 to 1 nursing in HDW was amazing. Drains were taken out in the evening, quite painful. Hemoglobin 8.5. Was on morfin drip during my stay in HDU, but unfortunately they needed the space, and I had to be moved down to Gynae ward at 11 PM. They couldnt quite control the pain after the sudden drop off morfin, but eventually got to sleep thanks to sleeping tablets at around 2 am.
Sunday, Day 3.2: Struggled to control pain in the morning, surgeon rewrit my medication scedule. It worked. Was unfortunately neglected by day staff. Couldnt keep food down. Wasnt out of bed once, the lovely night nurse washed me at midnight and found I was bruised "down there", resulting in me keeping the catheter in longer.
Monday, Day 4.2: Didnt keep food down in the morning, but made a real turn around in the evening. So hungry, had to get a second scone. Started feeling like myself, finally. Did I manage to get out of bed as well, I dont remember...
Tuesday, Day 5.2: Still feeling good, starving. Walking about. Hemoglobin 8.9, surgeon concluded internal bleeding had stopped, although bruising on my sides was still significant. Got catheter out at noon. Bowel movement started in the evening.
Wednesday, Day 6.2: Getting better each day, able to get in and out of bed on my own, walking about much more, eating well.
Thursday, Day 7.2: Got 2 stitches out (in the cross, the rest is dissolvable), didnt hurt a bit as my tummy is numb there. Was sent home in the evening due to tablet prescription delays.

Now to try to manage my own medication and care for a while!

Lesson learnt: Find a good surgeon and trust him/her to know what is best - definately never ever EVER tie their hands!

[misspinkangel]

Wow, what a rough time of it you had! I'm glad your home and hope your recovery is quick! :-)

[JessRae]

Oh my goodness! What a rough time in hospital. I'm sorry to hear that you had to go through all of that. But I am glad to hear that it is over with now and that you are home and can relax and hopefully have a quick recovery now!

[Debtrap]

Hi have you tried speaking with a surgeon who does robotic laparoscopy? The robotic technique  makes it easier for them to save or preserve your ovary as compared to traditional lap. I just had an 8cm dermoid removed this way a month ago and my surgeon was able to leave my ovary 100 percent intact. Good luck deb

[Debtrap]

Sorry posted above in wrong post and lost my reply to u...however Im sorry to hear about your terrible ordeal, and having to get open up twice, however I'm so glad you are on your road to recovery and starting to feel better...It also sounds like your needle phobia wasn't an issue...did I get ur path report back? Just curious to what the exact measurements were sounds like it was bigger than your doctorexpected...god bless deb

[asdf125]

Thanks, yeah it was rough, thankfully I was sort of in a daze and dont remember that much of the first week.

Needle phobia was bad before the surgery which is why they sedated me with tablets before, but I have no idea why it settled so much. The only IV I had done while concious was the one for the transfusion, but it was in a sore location and I asked them to move it while I was out for the second operation. Had an IV after the first one as well, but it had stopped working and had been taken out. Still dont cope too well with big needles, but any small injections in tummy/hip or blood tests turned out to be ok, i just dont look. Im so happy it wasnt an issue!!

No reports yet. It was like an uneven heart shape, and the bit we didnt expect was the extension going up towards my left rib. Dont know if it was touching the rib, but it must have been pretty close.

[asdf125]

Got the results today: mucinous borderline tumour, 3.0kg, 24x17x12cm I think it was, but didnt mention anything about the shape.
They hope the problem was removed, but Ill need check ups every 6 months.