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Large ovarian mass...scared of surgery... Large ovarian mass...scared of surgery...

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  #1  
Unread 02-26-2008, 10:53 AM
Large ovarian mass...scared of surgery...

This question is for those sisters that have had LARGE cysts/tumors removed. I am 44 and scheduled for surgery next week (3/6). I have a "large, complex, septated cystic mass" on my left ovary measuring 23cm x 20cm x 12cm per the CT Scan (slightly elevated CA125 coming in at 109 but that is not my concern right now).

Regarding the surgery plan, if it is benign or borderline my gynelogical oncologist has agreed to just take the tumor and the one ovary. If it is malignant then of course he insists on taking everything but the cervix.

Needless to say, lots of emotional swings, worries, etc... that change frequently. Though lately one of the things that is scarying me the most is the fear that they are going to fillet me like a fish to get this thing out. Of course the plan is to take it out whole and not rupture it.

The G.O. is doing a bikini cut, then pulling up the skin and doing a vertical incision underneath, I am somewhat amazed that the skin will stretch enough to allow such a large incision. Not sure if it matters but I am thin and this thing makes me look somewhat pregnant, so it makes me worry even more about getting it cut out.

I keep reading scary stories about women having TAH with "normal" sized parts, and how much they suffer etc... and I am starting to think that getting this thing out will involve much more cutting than a normal TAH and be overall much worse!

Has anyone had similar sized masses removed and how bad was it?

Sorry if this post seems scattered and rambling, that is just my current state of mind these days. : )
  #2  
Unread 02-26-2008, 11:50 AM
Large ovarian mass...scared of surgery...

Sonya,
I'm seven weeks post-op from a TAH/BSO with a vertical incision. I'm 45 years old. My saga started with my regular yearly pelvic exam where my gyn felt what she thought were uterine fibroids. She sent me off for an adbominal/transvaginal ultrasound which changed the diagnosis to a 15 cm adnexal (on or near ovary) mass on my right side, which had solid and cystic components. My gyn then ordered a CT scan, blood work for cancer markers, and referred me to a gynecological oncologist. The CT gave us very little additional information (no ascites - sp?), and my CA-125 was in the normal range. The gyn oncologist scheduled me for surgery. The plan was TAH/BSO and frozen section of the mass; then staging for cancer if the frozen section was cancerous. Staging would be washings, pinch biopsies of nearby organs, and debulking of other tumors, as appropriate.
In my case, the mass turned out to be two pedunculated (outside the uterus, on peduncles - stalks) fibroids, totally benign. My incision is about six inches long, from the pubic bone up to and around my belly button, and had 25 staples.
At seven weeks, I still have a swelly belly and I'm still being careful what I lift. I'm waiting one more week to start doing abdominal crunches again, but I started some stretching last week. I've been walking quite a bit starting from the week I came home (I'm up to about 45 minutes a day, which is about where I was before surgery). My incision and the area around it are still sensitive -- a firm touch doesn't really bother it, but clothing rubbing or pulling on it does bother it -- more uncomfortable than truly painful. I can get into almost all of my pre-surgery pants, but only the bigger ones are comfortable enough to wear for very long.
I hope this helps relieve some of your concerns. If you have other questions, feel free to write them down and I'll answer as best I can based on my experience. Obviously, we're all different, but at least you can hear from my perspective.
Sending positive thoughts your way,
Annie
  #3  
Unread 02-26-2008, 12:06 PM
Large ovarian mass...scared of surgery...

My mass was a bit smaller than yours. My surgery was the vertical incision so they could get to everything and check everything they need to as per protocol with ovarian cancer. These surgeons are good at what they do. They do not filet you like a fish. They carefully look at, check and remove what they need to to remove all of the cancer if it checks out to be cancer. There is what they call "optimal debulking" which is what they do to make sure that they remove as much as possible.

The most important thing here is your health and giving you the best chance of a good outcome. The most cancer they can remove during surgery, the better it is for you. They don't want the cyst/mass to leak as that increases the chance of the cancer spreading should it show to be cancer.

Are you rethinking the type of incision? If you are, please discuss this with your doctor. He can assist you with your fears and maybe even change the type of incision. He has your best interests when performing this surgery. He is the one that can help you with whatever decision you make.

s and ers
Jane
  #4  
Unread 02-27-2008, 04:01 AM
Large ovarian mass...scared of surgery...

Sonya my mother is going in for surgery tomorrow... she has a septated cystic mass also... this is what the ultrasound report says
"complex cystic mass in right adnexa with thick internal septations, liekly arising from the right ovary. Ovarian neoplasm is NOT excluded.
Abnormally thickened endometrium for post-menopausal patient, measuring up to 12mm in thickness which may be exacerbated due to distortion and displacemnet of the endometrium by the large fundal fibroid"


The drs don't seem to be too concerned, however they said they don't know until they take it out but they seem fairly positive.

I have never even heard of a septated cyst before... apparently it's a cyst that has separate sections. Do you know much about them?

My mother is so worried about the surgery as she has never had an anesthetic before..

I will let you know what the outcome is.

All the best
  #5  
Unread 02-27-2008, 05:43 AM
Large ovarian mass...scared of surgery...

Caz1 I do wish the best of luck to your mother, surgery is scarier when one has never been under anesthesia before!

Regarding the mass I have, odds are pretty good (probably 70/30) that it is benign or borderline. Quite honestly at this point I am not even worried about that, I am spiritual and if it is malignant, that is a matter of fate which happily am not worrying about right now.

I already had a nurse read a CTScan and tell me it was "probably malignant". I lived under that assumption for 10 days before getting a second opinion from another onc, I had the fun of riding that wave of emotion for several days over the malignant assumption which maybe why I am not fixating on it now.

I am so irritated with the "miscommunications" that have occured at my gyn/onc's practice that yesterday I would have cancelled the surgery and went with another doc, but found out I could not get in with the second guy for 6 weeks and I don't want to wait that long.

At this point I am like your mom and afraid of the actual surgery, or more accurately the surgery after effects (the cutting, pain, and recuperation) because it seems they are going to do a LOT of cutting to get this out.
  #6  
Unread 02-27-2008, 12:46 PM
Large ovarian mass...scared of surgery...

I am just wondering why you are willing to leave the cervix should the frozen section reveal cancer? Is this a new protocol for optimal debulking for ovarian cancer? To be honest with you, this is the first time I have heard of a gyn/onc willing to leave the cervix should there be ovarian cancer though it may be the current practice and I have not heard about it yet. They wanted to reduce the risk of spread and recurrence so would remove those parts that it does spread to.

As far as diagnosing ovarian cancer, they can only make and educated preliminary diagnosis based on what they see on ultrasounds and CT scans. It is not even advised to do a biopsy because if it is cancerous, the fluid can leak spreading cells throughout the abdominal cavity making it harder to remove all later, especially if some cells are still rather microscopic. The procedures are there for the best outcome for the patient should it be cancer.

It is not unusual to have a fear of the unknown. Is there going to be pain? Yes. Is there a recuperation period? Yes and 6 - 8 weeks is what is recommended for resting and healing and not doing too much and is there for a reason. Will you have swelly belly? More than likely, your tissues will react to injury and the incision is an injury.

In the great scheme of things with a potential cancer diagnosis and a subsequent confirmation of cancer, the important thing is removing as much of the cancer as possible. To be alive and healthy. Those of us who have had an ovarian cancer diagnosis or any cancer diagnosis are thankful for the opportunity at being alive and look back on our surgeries as life saving in spite of any pain, discomfort and inconvenience it may have caused us.

As far as anesthetic is concerned, the doctors will discuss many different things with you and tailor the anesthetic to the individual. It can be frightening the first time you have it, just know that the doctors do have your health and welfare as their primary concern when giving you anesthetic.
  #7  
Unread 02-27-2008, 07:03 PM
Large ovarian mass...scared of surgery...

  Quote:
Originally Posted by jmberg
I am just wondering why you are willing to leave the cervix should the frozen section reveal cancer? Is this a new protocol for optimal debulking for ovarian cancer? To be honest with you, this is the first time I have heard of a gyn/onc willing to leave the cervix should there be ovarian cancer though it may be the current practice and I have not heard about it yet. They wanted to reduce the risk of spread and recurrence so would remove those parts that it does spread to.
Originally this gyn/onc wanted to take EVERYTHING even if the mass was benign, I did not agree with that and I have been the one that pushed to retain the cervix either way. Keep in mind, this mass is huge, the likelihood of it being stage 1 is pretty low. That changes things imo. Sure it could go after the cervix, but it will also go after the intestines, liver, etc...and it is not practical to remove all those parts too.

Right now I am not sure if I am cancelling this surgery. I have had problems with this gyn/onc's staff, and I chose him because I could not afford to go with another doctor that used a plastic surgeon for the bikini cut. I told this doctor that is one of the main reasons i am going with him (he does the incision himself), because I could not afford to pay out of pocket for a plastic surgeon.

I had preop scheduled for tomorrow, then yesterday his office calls and tells me he does charge extra for that incision (nearly as much as the plastic surgeon would) and I need to prepay so much of it now etc... This is upsetting because 2 weeks ago I asked about all the costs before scheduling as I was worried about being able to cover things up front and was told "don't worry about it, that can be negotiated later".

Jmberg you are fortunate to have so much faith and confidence in your doctors. I am sure it is easier to go through this with a high level of trust.

I am not so fortunate. If they cannot come to a suitable arrangement immediately I will cancel the surgery for next week and probably have to wait a few weeks to get in with another doc. This situation is already stressful, the constant "communication issues" with the staff are making me very uneasy about this whole thing. Sigh.
  #8  
Unread 02-28-2008, 06:41 AM
Large ovarian mass...scared of surgery...

Hi Sonya610,
My primary tumor was my left ovary which had metastasized to the rt ovary, uterus, a 17cm omentum tumor, seeding on the rectum, seeding on the diaphram & 1 positive node. I had so much ascites fluid & tumor that I lost 50+ pounds post op. I felt so bad I just wanted everything gone & they "fileted" me wide open BUT that was the only way to do an optimum debulking in my case. My gyne/onc left my cervix which I still don't understand. In my case I couldn't get that cancer out fast enough. My CA125 was 1267 pre-op. I was 54 at the time. Post op I have done well. I had pain for a few weeks post op. I have not had any other problems since the surgery. I healed well. My incision has faded quite a bit. I would not wear a bikini now but I never wore one before. I hope all goes well with your surgery. Hugs
Bertha
  #9  
Unread 02-28-2008, 03:38 PM
Large ovarian mass...scared of surgery...




What a dilemma! You must bear in mind that the most important thing is getting that mass OUT in one peice and giving the doctors a chance to look around in your abdominal cavity should they see anything that looks like it may be cancer.

In many cases where ovarian cancer may be suspect, a long vertical incision is made to give the doctors the best chance of seeing any organ that may be involved, as well as giving plenty of room to get to anything that needs biopsied. The goal is to reach "optimum debulking" (removing as much visable cancer as possible), and a long vertical incision allows the best access to achieve that goal.

In my case, the plan was to 'go in' with a "low, vertical midline incision", but once they got in there, they discovered such dense adhesions that the only way they could get the tumor out without risking it being ruptured was to extend the incision up through my belly button . I didn't have a problem knowing they did what they had to do to ensure that I didnt' suffer from more complications...and a ruptured malignant mass is not something that one wants to deal with if it can be avoided.

A 'normal' CA-125 range is considered to be anything lower than either 21 or 35, depending on your lab. There are many things that could cause an elevated ca-125 reading. Inflammation, endometriosis, malignancy to name a few. Hopefully your issue is one of the benign ones and you won't have to worry about an extended scar...but ultimately, it should be left up to the doctor to do what is best for you.

Getting to the bottom of the issue at hand may require a larger incision than any of us would chose to have, had we had the chance, but I know my doc did what she had to do to give me the best chance of being cancer free. And for that, I am extremely thankful. My surgeon (who is not a plastic surgeon) did a fabulous job closing my incision.
My scar doesn't bother me a bit; I call it my lifeline to success! I've even noticed that it has faded to a barely noticeable silvery line in parts!

It sounds like you do not have 100% faith and trust in your doctors. I am so sorry to hear that! It is very important, obviously, that you trust this doctor to do the best job for you. If you dont' have a high comfort level with this doctor, I would definetly suggest that you get a second opinion with another gyn/onc.

Good luck to you in the days and weeks ahead...we'll be here for you!
  #10  
Unread 02-28-2008, 04:06 PM
Large ovarian mass...scared of surgery...

  Quote:
Originally Posted by k9equinewhine
In my case, the plan was to 'go in' with a "low, vertical midline incision", but once they got in there, they discovered such dense adhesions that the only way they could get the tumor out without risking it being ruptured was to extend the incision up through my belly button.
Oh lordy, I had not even thought of that! I know this is huge, and it is pressing on my diaphram, so I surely hope there are no adhesions. Well if the onc ends up giving me a vertical incision I sincerely hope he doesn't expect me to pay that extra fee for the "plastic surgery incision". Ha.

  Quote:
Originally Posted by k9equinewhine
It sounds like you do not have 100% faith and trust in your doctors. I am so sorry to hear that! It is very important, obviously, that you trust this doctor to do the best job for you. If you dont' have a high comfort level with this doctor, I would definetly suggest that you get a second opinion with another gyn/onc.

Good luck to you in the days and weeks ahead...we'll be here for you!
Yeah I worked out the deal with the business person at their office. I told them I was really on the fence as to whether to cancel the surgery, as I was not pleased with how things were being handled, and he would make that decision for me now. He agreed to my terms so I guess the surgery is on for next week. Now we have to scramble to reschedule the preop stuff. I really do not want to wait weeks, and maybe start over with a new surgeon, so I am relieved this is going forward.

Honestly the way I see it, I am contracting with this surgeon to remove the tumor, not to "cure" me of cancer (if that is the case). I realize that they insist on removing everything if it is cancer, and honestly I would want it staged if it is, but that is another issue entirely. They get paid to cut, that is what they do. It is a business relationship and I expect them (and their staff) to act in a reasonable, businesslike manner. I am not trusting them to cure me or save my life, but I am trusting them to do a specific job, as has been agreed to, for a specific amount of money (which fortunately has now, last minute, been agreed to).

Thank you for your kind words, and best of luck to you too!
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