Your thoughts needed please

[wannasmile63]

Can some of the regular ladies on the board, please read my journal entry, Russian Roulette, and send some positive vibes my way. It would be much appreciated, as I just don't know what to do.

[milashka]

"Peek and shriek" - that's really what they call it but yes, it still puts a smile on my face too although it really is a bad thing; it is so descriptive :)

After my ob/gyn refused to see me I really started pressing for appointments NOW. I had three more to go before surgery, and each time I heard "one week doesn't make a difference". Well, multiplied by three, it's a three week delay, and we were headed for the holidays, and whose to say which day the cancer chooses to settle in my lung and make me stage IV? I wanted it out asap, aside from that I was starting to have really bad symptoms. So, no, a few days don't make a difference, but still push for appointments (doctors, referrals, tests, pre-ops) to be made for asap. Remember, it's the squeaky wheel that gets the oil.

[wannasmile63]

Loving your post, "peek and shriek" couldn't have thought of any better way of putting it, you really put a smile on my face. After reading all the replies, I'm on a mission, and am definately going to make somebody listen to me. Was just thinking what a difference a day makes, 'cause thanks to everyones suggestions, I'm not gonna sit back and suffer until January. Even if I still have the same outcome, I'm going to be doing what ever it takes, to make sure I feel like I've covered all bases ;)

[milashka]

That's great! Good luck and keep us posted.

Here's a little story:

I used to see an ob/gyn that 2 years before diagnosis assured me - after tests - that OvCa at my age is very rare - 1% chance of it. Lo and behold I am presenting with a 12 cm tumor 2 years later. Well, I had an appointment with him but 1 hour prior his office called and said I still owed them $ 200 and although these charges had been included in my bankruptcy (e.g. they can no longer collect them), he said I will need to pay up if I want him to see me that day. I think that went a little deeper than a money issue - laughed it off 2 years ago, and here I am back with a 12 cm tumor on my ovary and in great distress! I had waited for that appointment for 3 weeks and I was devastated that they refused to see me.

In the end it saved my life! My family doctor called around and made an emergency appointment with another ob/gyn for the next morning, by then the CA-125 results were in and she didn't even examine me, instead sent me straight to my gyn/onc. I remember sitting there saying "no way" - oncologist was 1 hour away, surely there are doctors in my town of 100,000 that can take care of this, but she insisted, that I will be in the best hands at SEGO, and that is where I must go.

Had my original ob/gyn seen me, and done the surgery, it would 100% been a "peek and shriek" surgery, which is what you want to avoid at all costs! Meaning, doctors that are more used to delivering babies and tie tubes, open you up, literally shriek, see it's over their heads, and close you back up, THEN sent you to the gyn/onc. Or worse, they try to take it all out but are not trained on how to do it (e.g. making sure they don't cut and spill a tumor and cancer cells into the cavity). I have spoken with a few women during chemo that were sent to SEGO (my oncologist) after their doctors did surgery, and SEGO always laments that loudly as they did not have optimal debulking, chances of which are higher if a trained gyn/onc does the first surgery.

In 4 hours, my oncologist was able to remove every visible trace of cancer, even applying tools they use for brain surgery, sucking little deposits of cancer from my colon - I had a total of 8 visible tumors on the CT and many more when they opened me up, but when they closed me, there was only microscopic disease. I am not sure I would still be here chemo-free if my ob/gyn had done this.

I am looking forward to hearing back from you and how you fare with your new medical team. There is still a chance it is benign, and when they tell you that it is, you will be able to rest assured that it is because they know how to thoroughly stage you.

Good luck!

[wannasmile63]

To all you wonderful ladies out there, I thank you so much for your comforting words. I have decided to get a referral to see a GYN/ONC, as I'm sure the specialist at the hospital is a OB/GYN, who really specializes in difficult pregnancies. I just want a second opinion, and a clearer pain management plan. I do realise the specialist I've been seeing has my best interests at heart, but I can't help but feel like I'm in the "to hard basket", I will keep you all posted, and thanks again for just being here, you are all my saviours. Its not that I'm after sympathy, Its just if someone hasn't experienced this type of pain, they really don't realize how consuming it is.

[kimmywah]

Hi,
I have sent you a message on your profile.  I know how frustrating this can be and I am in the same boat as you at the moment with a complex cyst on the rt ovary.  I too am facing surgery in the next little while.  Hang in there.

Love and Peace Kim

[ladyjogger31]

I can only agree with what all the other ladies are saying . Make sure you get a good Gyn/Onc.
Sending positive thoughts your way.
Hugs and Prayers, Terry

[Burnzie]

Hi Maurita,
You must be so frustrated right now.  Its good  that you had the TVU done and the results will tell you more.  In the meantime I think it is essential that you discuss the importance of having a gyne-onc Doc perform the surgery as a primary surgeon.  If they want to consult and have a general surgeon in on the surgery thats great because its the general surgeons who use the gortex mesh the most in surgery world, so they are the best at getting it out.  A bowel surgeon is a general surgeon.  You need to go back to your general practitioner or your regular gynecologist and insist on a gyne-one Doc.  Don't let them "watch for ovarian cancer", making you wait unnecessarily.  We are heading into holiday season  and if Australia is anything like Canada, less gets done in the medical world at holiday season.  Good luck.
Burnzie

[Tybear]

Just wanted to add that I missed the part where you stated it was a GYN that was treating you - I have to agree with the others - for such a high risk surgery and knowing that they are suspicious of cancer you should definatley have a gyne/onc doing the surgery, not a regular gyne.
Good luck,
Becky

[Tybear]

After reading your journal entry, I can honestly say I know what the waiting game feels like. I started seeing my surgeon in April and my surgery wasn't until this past August. Every week, something else would come up and it frustrated me beyond belief. The bottom line is though that your doctor isn't making you wait to torture you (although it may feel that way sometimes!) He sounds genuinely concerned about your current situation and wants to make sure he has the best doctors available to help you.
My doctor would call me the day before my appointments to say "don't bother coming...I've decided I want to talk to another surgeon first so we'll meet in a couple of weeks". Then it would happen again and again and again! (with an orthopedic surgeon, a urologist and a plastic surgeon). By the time I went into surgery, I had met 5 surgeons and thank God he went to all that trouble - they accidentally severed an artery in my leg and the vascular surgeon literally saved my life.
I guess the point I'm making is that although it seems downright cruel to make you wait, they only have your best interests at heart - that, to me, sounds like one great doctor to have.
I especially like that he set it up where you can show up in emerg and be fast tracked to admitting - he knows your in pain and he's doing what he can to make this waiting period as painless as possible.
I hope you get answers soon...waiting sometimes is seriously the worst part of it all.
Becky

[milashka]

I second what dian said, find a gyn/oncology team that knows this stuff. If - IF - it is cancer, they will be able to treat you quickly and more efficiently than anybody else. If it is not cancer, the better!

[dian07]

If you were my daughter we would get a referral to a gyn/oncologist.  Not because this is cancer but because they are the specialists trained for your type situation.  A regular gyn or general surgeon are not trained to deal with your situation......if they were you wouldn't be in the situation, including extensive pain, that you are now in.
I wouldn't allow these guys to touch you if they are so insecure as to marke arrangements with the ER and ask you to put up with this unacceptable situation for another 2 1/2 months!
You need a different medical team......get in to see a gyn/oncologist and get this taken care of.
Don't give up.....you need to advocate for yourself  more aggressively.  Don't let these guys pat you on the head and send you home to suffer in silence.  Make some noise!
Please do keep us posted.
Peace.
dian