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

[AutumnMiller]

I thank everyone that replied .. This has been pretty hard for me and its really nice to be able to ask questions to people that have either been through some of this.. or that have a loved one that does or that is just educatied in this field. Its a great thing because i only remember like 10% of what the dr tells me lol..

I will discuse all this with her. thank you. Will i know if its cancer right afte rthe surgery?

[chelan3]

Hi, please DON'T ASSUME what your dr will do and confirm with her what you want - especially the frozen section pathology which is where as simply star mentioned above is done while you're still under.  If it doesn't *look* like cancer they won't automatically do a frozen section (they'll still do a regular pathology though).

Endometriosis is NOT cancer it's also sometimes called a 'chocolate cyst'.  It's a cyst filled with old blood.  Not sure if it runs in families.  

Glad to hear your surgery got scheduled for December 7th.  I'll be thinking of you that day.

Debbie

[AutumnMiller]

I think my mom mighht have had endometriosis.. It is NOT cancer right?
and does endometriousis run in familes?

[SimplyStar]

As far as the biopsy's go, almost any tissue removed during any surgery is sent to Pathology for examination. In the case where cancer is suspected a frozen slide is done and results can be back to the OR while the patient is still under. Then the deceasion on how the surgery proceeds is made.  If started with the scope and all is clear than the cysts will be removed, if they are small enough, and the surgery is over. If the report shows cancer, then the patient has a larger incision so that all the organs can be viewed and the doctor is able to remove all that is necessary.  To have an onocologist do the surgery does require a referral from the primary doctor.  A person can not usually just go to the phone book and set up the referral, that should be done by your primary doctor.  You should also check to see what experience the surgeon has in this field. Going to a cancer center where they have lots of patients is better than going to a small  community hospital.

[AutumnMiller]

Thanks.. I called the drs again.. and told them i'd like to speak with the dr since every time i try to set the surg up they keep giving me the run around. and they ended up transfering me to the lady (again) that schedules the appoitnmetns she said she is trying to "fit " me in somewhere.. however she is having problems and it looks like it will take about A MONTH.... So I told her how about a diff dr. and she said i'd have to come n get checked out my that dr and i was like " hey i'm in pain righ tnow.. do what you have to do" and t hen i told her i'm sorry if i am coming across as a pain in the *** but i'd rather not have to go find a new dr and i will just go the er if i have to.. so she is trying her hardest to figure it out before it comes to that... so we'll see

[PPhelps]

Just keep on pushing. As for the questions that is why we are here. I've been lurking around this site for over 2 years now. I try to help where I can. God bless.

[AutumnMiller]

Thank you. I will . I guess i really should be askingmy dr all these questons but for some reason they are not getin gback to me.

[PPhelps]

When you discuss surgery with your doctor they will have you sign a form for the procedure. Make sure you discuss the biopsy with her at that time and tell her you want it done don't assume she will just do it, and have her tell you what she will do during surgery, so that you are comfortable with any aspect of the surgery.

[AutumnMiller]

Thank you. So based on my post.. and all the stuff i have told you guys about the cysts.. Is it safe to assume that the dr will be taking biopsies.. or will i still not know til the doctor gets in and sees the cyst?

[vidflorida]

I would demand an oncologist just in case...you have that right and as this thread began: YOU ONLY HAVE ONE CHANCE TO GET IT RIGHT THE FIRST TIME!  I know how scared you are - and just like you I always second guess my gut feeling.  But I love what someone said "Prove to me that I do not have ovarian cancer" Instead of just assuming that all is fine.  This is my new motto and it has helped me a lot - I call the doctor with confidence now instead of feeling like I am the over needy patient!! Hope this helps...it is such a confusing time.

[PPhelps]

Its when the surgeon takes biopsies of the abdominal cavity, and removes cancerous organs. That is why a gyn/onc is needed. Here is alittle bit of an article from the New York Times.

"While the patient is still on the operating table, biopsies are preformed on the tissue that was removed, so that if cancer is found, the surgeon can operate more extensively. Experts say such an operation should be carried out just by gyn/onc, who have special traiing in meticulously removing as much of the cancerous tissue as possible. This procedure, called debulking, lets chemotherapy work better and greatly improves survival."

We can't say what you have is cancer, nothing but sugery can say for sure. So you want to make sure you have the proper surgeon available just in case. So you have a better chance. No one can tell you with 100% confidence that its not cancer.  

[AutumnMiller]

debulking? what is this? i'm sorry-- lol i have no idea what this is

[PPhelps]

It's great that you trust your doctor, but a gyn/oncologist is what is needed for debulking surgery. So please have one on call. So IF it is cancer they can properly dubulk. No matter how great a GYN is they don't have the experience for that type of surgery. I'll pray that you become a member of the B9 club.

[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?

[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.

[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.  

[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!

[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!

[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.

[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.

[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.

[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".  

[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.

[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.