Surgery......

[AutumnMiller]

OK- So I need someone to answer a couple questions for me. My Doctor did not tell me what kind of surgery I will be having.. However I think is between two...right?  I'd like to know what I'm in store for. I remember her saying saying that it should be one small incision and then one bigger one.. She said depending on how it is.. It might also have to be an open one?? ( i have no idea what this means) She said that we can scedule the surgery as an ASAP- because they are getting bigger and I am in a lot of pain. Does anyone know what that term means? .. Open? I also remember her saying that she has to fill me up with some kind of gas and then she will have to squeeze my body and she release most of it.. To give backround- she will be removing two cysts.. One went from being like 2.0 x 1.9 cm to 5.9 x 2.9 and ther went from 3.3 x 1.9 and stayed the same. but formed what my dr said is a pocket of blood but its stable. She wants to remove both. Does it require me to stay overnight?

If anyone has any adivce. please letme know thanks

[rmarie]

It makes me angry when someone leaves a physician's office scheduled for surgery and does not understand what they are going to do to them.  You have 2 cysts one which has gotten larger and the other is the same size, but has changed in apperarance.  The recommendation because of increasing size is surgery.  They are probable going to start with a laprascopic removal of the cysts, which involves 4 small incisions, and yes they do fill your abdomen with gas.   The gas fills up the abdomen and lets them get to the organs they want, without damaging the others.  They will take a biopsy of both cysts and send them for pathology.  If the pathology comes back, cancer then you would need to have a larger incision to determine what is known as the stage of the cancer.  This is a number of biopsies of tissue taken from throughout your abdomen.  Also if there was a problem removing the cyst with a scope they would make a smaller incision, from your bikini line to just below the belly button.  if it was cancer the incision would be from the bikini line to just below the ribs.  If you have the laprascopic procedure, it is usually a 23 hour or less admission to the hospital.  Hope this helps you, if you need to need more don't hesitate to ask.

[dian07]

Hello....rmarie got most of the details in her post.....I had the big incision....it ran vertically from just above my pubic bone to just under my navel.  I was 55 when I had the surgery and I hate hospitals so I began walking the night of my surgery, had a bowel movement and shower the morning after my susrgery and went home the evening of the day after surgery......most people don't do that, but like I said , I hate hospitals.  I recovered just fine in the same couple of weeks it takes us all.  
Now....one thing rmarie didn't say.....YOU HAVE ONLY HAVE ONE CHANCE TO GET IT RIGHT THE FIRST TIME...... your surgeon must be a gyn/oncologist.....not because you have cancer, but, because if it is found that is the person most qualified to be performing the procedure.  Don't take a chance on needing another surgery or on your surgeon not doing the best job of "debulking" (removing any questionable tissue or getting the staging done properly)......you are a mom....your child deserves to have you around for a long time......you deserve to be around for a long time.....give yourself the best odds just in case you need them......get yourself to see a gyn/oncologist.
Please do stay in touch and Haappy Thanksgiving!
Peace.
dian

[AutumnMiller]

Thank you. So I should find a gyn/oncologist in my area?  She said if my ca 125 levels are higher ( which i just had the test done the other day ) then she would have an oncologist in there with us.. Does that make sense?

[chelan3]

CA125 values are not an indicator of cancer they are used to monitor treatment of ovarian cancer.  That's why it's not a test for ovarian cancer.  You should have a referral to discuss your situation with a specialist.  The type of specialist you need to see is a gyn-onc as the others above have mentioned.  Please do this before you are scheduled for surgery and as soon as possible.  Make sure you have a gyn/onc not just an oncologist too.  It's your life, fight for the best care...for you and for your family.
Take care and let us know how you make out.

[Brownie3321]

Ditto to having a onc/gyn perform your surgery!!!! It is so important!!! Good luck. Deandra

[SimplyStar]

if you have the time read about the assay blood test they are doing in trials now, it proves the point about having an Gyn/Ono there.  It is posted under good news

[AutumnMiller]

Thank you. I will call around today to see if I can get into see an gyn/ono right away since i'm in a lot of pain hopefully they will see me right away ya know.

[AutumnMiller]

SO ... I looked up some Gyn/oncology doctors in my area and I called one.. and some B*tch.. answered and waas asking me these questions and told me that unless I was referred there than a doctor is NOT going to see me . She asked me if i have a cancer dx.. I was like "no" but i have a cyst that is growing quickly. Then she asked me again if i was referred .. I got sick and tired of her so i finally was like.. "i'll call back when i'm referred  and hung up on her- unbelievable.

I called a dr that looks good on the net and they said she is par w/my insurance however the hospital she uses is not. so they gave me this other guys number... but the people that answered the phone are mean.. maybe I should just find someone else.. what is up with that.

I also called my drs office again and said "Hello.. can you have my dr call me. She said we could do the surgery as an asap because i've been in pain since before 10/29 when i had my first u/s, Can you please just have her call me since Matty-- the scheduling girl.. is giving me the run around and i don't appreicate it.. I'M STILL IN PAIN and so she apologized and said i'll give the dr your note ( i bet she throws it in the trash)
**** i guess im not having a good day today***

[vidflorida]

Stay on top of your gyno - he/she should have referred you to an oncologist. My gyno said she would love to do the surgery but it would not be fair to me. I need to have an oncologist performing the surgery as they specialize in this area.  Get the referral - I know it is a frustrating process. My onco will not see anyone who is not referred either...be persistent!! You are in the right here!!!!  

[Casey06]

Did you have a CA-125 yet (sorry I can't remember).

If not have your GP or Gyn order it, not because it is difinitive for cancer, but god forbid, it be elevated, it will be ticket to a referral for a Gyn Onc. Just don't panic if it is elevated, it is positive for many benign conditions and false negative as well (not elevated when you actually have cancer).  It is correct 50% time for pre-menopausal women and it is recommended to have the test if you look at the John Hopkins site:
(I don'yt know why everyone is against having this test, it's just a test and another piece of infor to work from--get the damn test already).Early recognition of symptoms is the best way to save women's lives. Early symptoms include:
Bloating, a feeling of fullness, gas
Frequent or urgent urination
Nausea, indigestion, constipation, diarrhea
Menstrual disorders, pain during intercourse
Fatigue, backaches.
Take action if any symptoms last more than 2-3 weeks.
If ovarian cancer is suspected, ask to see a gynecological oncologist.

What You Should Ask Your Doctor
While everyone has these symptoms from time to time, it is important to know your own body and know when something is not right.

If you have these symptoms and they are not normal for you neither you nor your doctor knows why you are having them,

Then ask to have these important tests to help you rule out ovarian cancer.

Bimanual pelvic exam
Ca125 blood test (If it comes back elevated, ask your doctor to repeat this test monthly for several months. If it comes back progressively more elevated each time, even if the values are low, this is an indication that the condition could very likely be serious.)
Transvaginal ultrasound.

We need to be consistent with what is recommended for symptomatic women.

BETTER SAFE THAN SORRY!

Good luck.

[AutumnMiller]

I don't get it then. why did my dr insist on doing it? ? when i called i said with the message- should i just go see a gynono.. hoping th at would be my refferal.. why would she say she's do it.. hummm

[AutumnMiller]

Yes I had the test however my dr hasn't called me with the results yet.

Its just messed up because my pain is getting worse and worse..
It has moved to my back on the right side lower.. and around the right hip. I've been taking 10-20 mg at a time of percs and am still hurting and feel really drugged. i'm tired of hurting and i just want to feel better. ya know. I will call back at 12 if i dont hear anything.. i called at 9

[Casey06]

Sorry, I am a scatter brain today and duh, didn't see you were waiting for results.

Call your doctor for the results until they are sick of hearing from you.

My doctor called me and was very kind about the whole thing. (My GP was very good and kind), not all doctors were though.)

[LindaF]

John's Hopkins, one of the top (if not THE top) hospital for ovarian cancer does NOT have an Oncologist perform each and ever surgery for cyst removal because it ties up the oncologists and keeps them from saving lives of patients already with a diagnosis. What they do is a triage of sorts -- they evaluate the cyst. I might add when I was there, they were not interested in a CA-125 on me at all because they feel they are not useful for diagnostics. They are much more interested in the cyst itself and it's physical characteristics and growth patterns if it has been watched over 2 months. If the ultrasound shows a complex cyst that does not have blood flow and strongly favors a benign look, they let their OB/GYNs do the surgery. If they think there is a possible cancer, they have an OB/GYN do the surgery in the building where the oncologists are so they can call one in if the intial path comes back looking borderline or malignant.

Given their track record, I believe they have it right.

[Casey06]

Why does the JH site say to get one then? It is very confusing when the public website says this, if it is not truly recommended.
It's too bad there isn't a concesus amoung docs on how to diagnose benign cysts from possible OC.

So are we making a mistake in sending someone with a suspicious cyst to a gyn onc.

As you said, JH is the one of the top hopitals in the world, but other docs and US facilities may not be as good as JH at interpreting th US. So for the few ladies that find their way to this site, I still say if symptoms warrent it, see a gyn onc and get the CA-125!

That's my 2 cents.

[PPhelps]

What is a Gynecologic Oncologist?
Gynecologic oncologists are specialists in the area of female reproductive cancers.  By training, they are ob-gyns with an extra specialty added on.  This means they complete 4 years of ob/gyn training after medical school, and then 2-4 years of more specialty training beyond that.  They are trained in all the treatments used for gyn cancers - surgery, radiation, chemotherapy, and experimental treatments.
What can a gyn-onc do that other doctors can't?
Not only do gyn-oncs learn to do surgery on the female reproductive system, but on all the organs of the pelvic and abdominal tissues and organs which may be involved if cancer has spread.  Perhaps most importantly, they are extensively trained in the vital techniques of surgical staging and cytoreductive surgery (also called "debulking").  These procedures can ultimately be a matter of life and death.  In Susan's case, for example, accurate surgical staging did not take place.  Even when other specialists perform surgical staging procedures, they are less likely to do it accurately than gyn-oncs. Finding the exact stage of the cancer is vital to planning the best treatment.  In the case of cytoreductive surgery, gyn-oncs simply do a better job of finding and removing tumors that have spread in the pelvic and abdominal areas.
Another advantage to seeing a gyn-onc is that one doctor can manage all the treatment for a patient, since they are trained both as a surgeon and a specialty oncologist.  They can prescribe and oversee all aspects of a woman's treatment, and are the most likely professional to be well-versed in the latest treatments in the area, including experimental ones.

Who should see a gyn-onc?  One gyn-onc I asked gave this capsule summary:  "Anyone who has been advised to have surgery for what could possibly be a gyn cancer".  This would include exploratory surgery for any "suspicious pelvic mass".  

[LindaF]

Well exactly! What the JH site says is if ovarian cancer is suspected, ask to see a gynecological-oncologist. Suspected.   A suspicious pelvic mass is correct hence my point about triage. Bloodflow, nodularity, thickness of the cyst walls and general appearance on ultrasound help immensely with that. They can't tell for sure, but they sure can help narrow down what is more suspicious.

I had a persistent 4cm cyst. It had thin walls, no septae, no blood-flow and one nodule. Given what is known about ovarian cancer and appearance on ultrasound, it was determined to be most likely benign. They were exactly right and it turned out to be a tubal cyst.

Not even a year later, I went to the ER with persistent pelvic pain. Turned out I had another cyst but this one was smaller and had all the visual characteristics of a hemmorhagic cyst. Recommendation was a two month wait and another ultrasound. They were correct, that's exactly what it was.

I understand the seriousness of ovarian cancer however there are steps that need to be taken prior in evaluation which is probably what that oncology nurse was looking for when she was asking for a referral. It might just be that the oncologist would look over all the reports and scans and decide not to do the surgery. It's definitely worth getting that opinion though.To call the oncologists and staff names because they won't comply is a bit harsh.

[Casey06]

Thank you well said and I agree 100%. My gyn onc didn't think I was wasting his time when he offered to do surgery on my benign endometrioma. I asked him to reassure me that it was benign and he said he thought it was, but said "don't make a liar out of me". He also told me to do the bowel prep, just in case. So I ended up have a borderline tumor, so not totally benign, but still I was lucky! He did the full cancer checkout, omentum and node sampling and all and I'm glad he did.
I have read and some may say, this is not necessary for borderline, but it is still the recomendation for most gyn oncs (http://www.nccn.org/patients/patient_gls/_english/pdf/NCCN%20Ovarian%20Guidelines.pdf).

There are few gyn oncs, relative to number of ob/gyn (which are a dime a dozen, as far as I am concerned), but if more women go to gyn oncs for surgery on suspicious masses/cysts, then they will "make" more (because of demand and not to mention they make a pretty good living) so I don't suscribe to the thought that we should not bother them. Let them decide that!

Go to the gyn onc and see if they recommend the CA-125.

[chelan3]

My gyn told me "you 100% don't have ovarian cancer" when I first saw him for my complex cyst.  My family dr trusted the gyn.  The radiologist who did the U/S believed it was suspicious.  I thank him for my good health today.  I "knew" it just wasn't a cyst - deep down I just knew - call it women's intuition or whatever.  Everyone else (friends, family, co-workers) thought I was crazy (granted I was a 'little' crazy about it...lol) about pressing for second opinions, bloodwork, frozen sections, a second U/S  and specialists.  I'll never regret my decision and will always encourage women to see a specialist or get a second opinion BEFORE surgery.  
Trinston'smom: if you can't see a gyn-onc ask if one can be on call for your surgery.  Even a second opinion from another gyn might even be a good idea if you can't see a gyn-onc.  Please remember that Ovarian cancer is rare.  We need to become our own advocate.  And may I suggest that instead of asking "do I need to see a gyn-onc" say "I WANT a referral to a gyn-onc".  Good Luck and Best Wishes.

[LindaF]

I hear you -- that radiologist report is critical and you should go with your gut. I believe in gut!! By all means, if a onc will pick up the case, go with it!! I've been told I'm a 'little crazy' about a lot of things, only to be proven right and heck, I'd rather be proven wrong and be a little crazy! LOL.

To have one on call for surgery is a great option. Hopkins was VERY clear about that, VERY. That if they got in there and things changed, that they would have an onc. on call. That's EXACTLY why I went to Hopkins to begin with!

[LindaF]

And TristansMom, have you ever had endometriosis? Could be what they are seeing are chocolate cysts or endometriomas. A cyst that fills with blood (hemmorhagic) can also balloon up like that!

[vidflorida]

You said:  "She said if my ca 125 levels are higher ( which i just had the test done the other day ) then she would have an oncologist in there with us.. Does that make sense?"

That makes perfect sense - since you have not gotten your results yet. If these come back elevated (as mine did) you may then be referred to an oncologist.  

[SimplyStar]

Nothing is "rare" than gets over 22,500 new cases per year and a death rate of  around 15,000 per year. And that is just here in the states. That would wipe out 1/6th of the city I live in.  I think I saw stats where 1 in 64 women will develope OVCA in their life time.  Most women get cysts, yes, 98% of them are benign, What is 2% of the female population?  A very small percentage of women suffering from OVCA come to this forum, they have to have access to the net, have to own a PC, they have small town doctors without knowledge beyond IBS. When Polio was an epidemic, the March of Dimes was started,  it spread the word every where and raised money for research  and helped those affected pay the bills. .We need a Banner gals, we need high powered publicity.  Who has the big money?  The pharmaceutical companies.  Maybe hit them up for help. Wish I were 39 again instead of 77, I would get out and stomp on a few doors.  Off my soap box, Kimberlys death hit me hard, I am sorry if I was venting. But I want my daughter to live and if shouting at the right people will do it , I am game.

[AutumnMiller]

Ok. THanks for everyones input- wow alittle confused now =) I DO trust my dr to do whats best.. so if she thinks its cancer - i think she will do the right thing and *page a gyn/ono.I would be perfectly content with having her do the surgery but I have that "gut feeling" HOWEVER i've had the gut feeling before when i had two masses removed from my breast back aug 2007 and i was sent o a breast suregon at Jefferson in PA and Thankfully they were Bengin.. *but i did that that feeling". i'm scared because Cancer does run in my family. My mother has Lung ( I know it doesn't run in families), my brother has skin/heart, my grandmother had breast cancer, my grandmother ( moms-mom) had a cancer that was unknown what kind ( i'm guessing like uterus ( they thought she was pregnant but it was the cancer not a baby) my aunt had skin. SO Its very hard for me to think on a positive note..... that its not cancer. However i'm tryng and i'm tryng not to worry or think negative. ( just given all i've been throuhg in the past couple years.. well I JUST HOPE ONE MORE BAD THING WON'T HAPPEN TO ME.. ESPECIALLY LIKE THIS....
So its OK to see my normal GYN and ask her to have an gyn /ono on call just in case...

The fact that its bigger than 5 cm... the fact that it is complex and on both ovaries the fact that there is some free pelvic fluid and that there is a pocket of blood on the one.......and the fact that in 9 days it wentt from being
2.0 x 1.9 cm to 5.9 x 2.9 and theer went from 3.3 x 1.9 --- and stayed the same -- just formed that pocket.. SO THIS ALL MAKES IT SUSPICIOS RIGHT? DO I TRY AND HAVE THE DR SEND ME TO A GYN/ONO.. OR TELL HER TO JUST MAKE SURE ONE IS ON CALL?