Ovarian cysts with septation - I am officially scared
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Erika, what a relief! I'm glad you are happy with your decision to do the surgery and all went well. Mine is coming up soon, just waiting on a date, but was told it will be in 2-4 weeks.
Mymountain, I'm not sure what kind of incisions will be made. I was under the impression that the uterus comes out through the vagina? Maybe I'm wrong, but I think that's what he said. I don't think it's with the robotic device that erika mentioned above, since I never heard any of that even mentioned. I don't know how they'll do it. I guess I have a lot more questions to ask at the pre-op appt.
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All you ladies that had surgery to remove ovaries, uterus or hysterectomy, did you have a regular gyne do the surgery or a gyne -oncologist? I am looking at having a hysterectomy with ovary removal and was referred to a gyne-oncologist. Thank you in advance for your input.
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Nancy,
I had a TAH/BSO (everything down there) a little over one year ago. Because I have had several strange pap smears over the years, I was already going to a gyne. oncologist.
For the hysterectomy, I think there are three options. (1)The uterus and ovaries can be taken out through the vagina, and this Davinci machine is some kind of robotic arm or something that helps. (2) there can be a horizontal cut right above the pubic bone. (3) There can be a vertical cut from the pubic bone several inches up. This is what I had as I had a large dermoid cyst with the possibility of ovarian cancer. I also had lesions on my pancreas and liver that I hoped the Dr. would be able to check out while messing around in there.
I think each method has different recovery times. I think 3 is the worst. It is over now, and I hardly remember it except for the scar line.
There is a good web site for information and discussion groups on hysterectomies.
hystersisters.com
It is similar to this breastcancer.org, but not as easy to navigate.
Hoping for the beautiful word benign!
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Nancy - I had TAH/BSO this past Monday via robotic/Da Vince device which is by far the best one! They make 5 very small incisions in diff areas of the abdomen and the whole surgery is done via a computer screen. It is the fastest for healing and least invasive. I was out of the hospital on the same day, and the next day I was already walking. Right now I'm suffering from serious constipation and a lot of pain in the abdomen because of that but I already had such serious problems prior to surgery due to IBS. Most women recover very easily. Best of luck to you. Let me know if I can answer any further questions.
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Also, My oncologist sent me to a GYN for a consultation/ultrasound etc to check my pelvic prior to starting on tamoxifen. Due to y ovaries/uterus condition he decided the need for surgery and scheduled it. I went back to my oncologist for opinion and to discuss further what GYN had suggested and later I went for the surgery. Follow up treatment will be continued with oncologist.
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Nancyla, Since I'm considered high-risk (because of breast cancer diagnosis & complex cyst) I was referred to the gyn-onc. My regular ob-gyn said he only does the low-risk surgeries. The gyn-onc I saw only does the "open" sugeries, but agreed that I would be a good candidate for the laproscopic surgery, as long as he (the gyn-onc) was there to "assist" the laproscopy surgeon (hopefully my regular ob-gyn whom I love!) just in case anything out of the ordinary is found (aka CANCER) I guess I should take that as a little bit of good news, since I guess it means he (the gyn-onc) is not so worried about my comlex cyst being cancerous that he is allowing me to do the less invasive surgery. I'm now just waiting for a surgery date when both docs can be present. Looks like it will be early-mid April.
motheroffoursons, Thanks for adding to this thread and providing the link. Every bit of info helps! What does the TAH/BSO stand for? Is that the same as laproscopic? Or are there different kinds of laproscopic surgery?
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Weety,
Total abdominal hysterectomy/bilateral salpingo(tubes)oopherectomy(ovaries).The gyn onc who is following me said that an open abdominal incision will be done in the absence of suspicion for malignancy. With an open surgery, they also do a peritoneal lavage (washing), again if there is anything suspicious. That is to wash any cells that may have escaped into the peritoneal cavity.
Hope,
I'm really not too concerned about messing up my tummy. My scar is still pretty pink/purple (you know that incision color!). I just don't want to be sliced up again, horizontal or vertical. GYN doesn't think the big ole fibroid can be taken out via DaVinci, or I'd sign up tomorrow. I'm hoping when I'm done with the tamox, everything will get back to normal-haha... that is a relative term these days?
MM
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Okay ladies, I need your opinions. I can have my surgery April 20th if I want my regular ob-gyn to do the surgery OR I can have it on April 6th if I'm willing to go with the other surgeon (for both dates the gyn-onc will also be present). Should I wait for my favorite doc? Would 2 weeks compromise my care or alter the outcome in any way? (I'm waiting for an answer to that question from my ob-gyn as well)
Erika, what kind of estimated recovery time did they give you? I'm running out of medical leave at work, too, so that has to play in to my decision as well.
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Weety911 - If you feel MOST comfortable with your own Dr., then wait! However, once you're down under, it does not matter and they all will do the procedure the same way.
My recovery should be an easy and fast way because of small incisions (robotic). They say 2 weeks but ALL the sites I've been researching on say DO NOT LIFT WEIGHT for at least 4-6 weeks. And FULL recovery takes place in 6 months. So, you need to train yourself not to do things the ways yu did them before. Yesterday I started bending and picking up stuff and cooking without realizing it...I'm till in serious pain but I think it is because of all the gas and constipation which was already bad before surgery....But I'm already doing long walks and it is highly recommended. What kind of work do you do? If it is a lot of physical activity you need to probably be on medical leave somehow for a few weeks (easier said than done, I know!)
Mymountain -Now I'm a bit confused about the regular hysterectomy and robotic laparascopic! The way I understood my procedure is that they went into my abdomen through the 5 incisions with robotic 'arms/hands', cut everything and removed ALL through the vagina including cervix, and suture/stitches were done via robotic through the incisions so no surgical procedure happened via the vagina but just the removal of intact organs for pathology.
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Erika---then your surgery was actually a LAVH / BSO, not a TAH/BSO (a TAH is open abdominal surgery; sounds like you had a LAVH---laproscopic assisted vaginal hysterectomy).
Weety---I had a TAH/BSO--my gyn was concerned about a possible ovarian cancer; my mass was nearly 8cm and he wanted to be able to open the abdomin and look all around; I did have peritoneal washings done as well; fortunately everything turned out benign.
Anne
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awb - Thanks for the info! I went online and checked and it seems LAVH was the procedure done. I wonder why the doctor did not make it as simple to explain it! I had to ask several times how it was done. I guess they go in without knowing for sure which exactly will be best. I have to as him to explain reasons again. I also noticed online that this procedure can be done with only a single small incision in the belly buttom. I wonder why I have 5! Thank you again for your help.
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I've got a surgery date--April 20th. It will be done laproscopically by my regular ob-gyn but the gyn-onc will also be present in case anything unusual is found. I don't know what kind of laproscopic surgery it is. I didn't even ask. I have the pre-op on April 14th so I guess I'll found out more then. The waiting continues. . . .. . . . . . .(but at least I finally have a date)
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Weety - April 14 is less than a month away and time goes by fast, but I've been there and it'll probably feel more a year! Keep yourself occupied with other things. I was way too anxious and spent too much time researching and thinking about it...It is time for you to relax now! Soon this will be over.
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Hi Erika09
I'm glad to hear that you are feeling better!Weety911: I had robot assisted lap hyst/BSO back in December and my surgeon had me out of work for 6 weeks. I have a very active job. I was told that if I had a desk job that I could have gone back after 4 weeks. The temptation is there to overdo it because you feel pretty good in a relatively short period of time, BUT it is still major abdominal surgery. Good luck and it will be here before you know it.
TCK
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I'm still confused with all these acronyms. My report reads: Surgery request submitted to do laparoscopic TAHBSO. I thought I understood from above that TAHBSO is the open surgery. What the heck am I getting?
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weety----a TAH/BSO is open abdominal surgery; perhaps your surgeon uses the abbreviations loosely or interchangeably--double check with him to make sure you are having laproscopic surgery.
anne
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I had a TAH-BSO (Total Abdominal Hysterectomy-Bilateral Salingo Oopherectomy). There is a website called hystersisters that although a for profit website - has a great discussion forum on it as well. It should be able to answer all your questons.
good luck!
Trish
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Thanks for the link to hystersisters. I will check that out.
I have a question for you all--Can the sonographer tech give you FACTUAL info if you ask it in that way? I know they aren't supposed to tell you anything or offer any of their impressions, etc. But if I ask purely factual questions such as, Is the cyst still there? What is the size? Etc Can they answer them? What if I ask to see the darn thing? Can they show it to me?
I have my follow-up ultrasound today and I'm hoping, hoping, hoping that it's vanished (or realistically thinking, at least shrinking!) But I want to ask some questions so that I don't have to wait 3 days to get all the results.
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Weety
You can ask anything you want it is your test and your body, whether or not they answer you is another question. Some are great and understand our fears some just follow the rules. I always say go with your gut instinct and just be honest in what you are thinking and feeling at the time.
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thanks mmm5
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Weety,
When I have my US's the radiologist comes right in to discuss the results, and will actually show you what they are looking at on the screen (kind of like post mammo ) If there is a radiologist on site, ask to speak to her/him instead of the tech. Good luck today!
MM
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I've stayed away from this board for a few days while I was waiting for my results of the follow-up ultrasound on my ovarian cyst. I've been a nervous wreck. The report basically says that there is no significant change. It has not grown, but it has not shrunk either. I guess that's good news, but then again, it's still there and it's still complex. This time the wording said, "irregular soft tissue peripherally to the cyst wall." Oh joy. Surgery is still scheduled for next month. Don't like the waiting game.
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I have not been to breast cancer.org for some time because I was starting to obsess over everything. Now, I am back to gain more knowledge.
Like the women on here I have been through bilateral mastectomies, chemo, rads...almost Tamoxifen, my Onc agreed with me not to start it because of other medical conditions that it would have made worse...and now I am dealing with Complex Ovarian Cysts.
I am not sure what will happen with it. I had a DnC, Hystroscopy, Tubal Ligation, and Ablation done in the middle of March. I would have looked closer to having a full hysterectomy done had the GYN explained to me that I had a "complex ovarian cyst with septation" at the time that I had my first GYN appointment. So now, I am sitting here with the cyst slowly growing (it was 1.7 in Jan, and then 2.3 cm at the beginning of April) She looked at my ovaries when I had the operation and she told me that the cyst was INSIDE the ovary, so I don't have a clue as to what kind of cyst it is or most likely. I am planning on getting my u/s reports, but I have not done so as of yet. I am just exhausted over worrying all the time.
I have 3 kids that I have to be here for.. Any insight to what is going on would help me tremendously! I know my CA-125 levels are normal, but my Onc stated that they don't tell the full story with ovarian cancer and most times wont rise until later in the desease...making it a poor test to depend on.
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Colette, I just had my surgery last week and everything ended up being BENIGN. I had a cystoadenomafibroma. I think you are right, the first thing you need to do is to get a hold of your reports that tell about the cyst. Ultrasounds are very good at helping to determine what is going on with a cyst. I'm also going to send you to this other thread that has most of my story on it, as well as a few other women who also went through some abnormal cyst situations. http://community.breastcancer.org/forum/105/topic/732226?page=2#idx_60
I'm surprised your docs didn't recommend you to have a total hysterectomy when you had your other surgery. That was one of the first things by ob-gyn said to me! He didn't even do the normal protcol of "watch & wait"--he sent me immediately to the gyn-onc, who although didn't think my cyst was too alarming or indicative of ovarian cancer, did agree that with my bc history and because of the mental anguish/anxiety, that he would give me a surgery date and agreed that I probably should just remove all. When I looked at my records after seeing him, it said recommendation: TAH/BSO recommended for both treatment of pelvic mass and preventative reasons: breast cancer.
Keep asking questions, I'll try to answer any you have since I just went through this! And get your reports!!!
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I just noticed that my link didn't work. THe thread is called "atypical ovarian cysts after bc treatment" and it's in the "not diagnosed with recurrence but concerned" forum.
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weety911..Thanks for getting back with me so quickly...that is the worst part about all of this...They did suggest a total hystorectomy, but they didn't tell me that it was a "complex" cyst...they just said a cyst...they didn't explain to me much of anything and I am kicking myself in the a** because I didn't ask for a copy then and there. The GYN just suggested it and gave me pamplets about each proceedure and how long I would be out for.
I didn't prosue the total for a few different reasons...because I was hoping that I would not have to be 'out' for so long because I am also starting reconstruction on my chest on the side that I had cancer on and my husband will have to stay home for that (I have a 21 month old who needs to be taken care of) and because I was trying to "save" my ovaries because I have lost so much in the past year that I am tired of feeling like I am "half" a woman.
If the GYN would have told me (or I would have asked to see the report) I would have most likely done a total, because I don't want to take any risk.
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Gosh, I hear you on feeling like half a women. I won't even bother to get into that! I also have a 16 month old running around, so I know how exhausted that makes you, too! Don't beat yourself up for not doing the total hysterectomy. We always make our decisions to the best of our ablilities with the info we have at that moment. (Don't you think if I had known I was goiing to get breast cancer at 38 that I wouldn't have cut that boob off before then? But no, I had no family history of breast cancer. I was healthy, young, breastfeeding a baby. . . but in hindsight, I can wish I had done so many things, all of which would have been unrealistic and crazy at the time since I had no reason to believe I was at high risk!!!)
I do think you need to consider having the total hysterectomy now, or at least having the laparascopic surgery to remove the cyst and determine what it is. My total hyster was planned, and it would not have made a difference if the cyst had been benign or malignant--everything was coming out. But, my ob-gyn says they do lots of surgeries where they base the final result on what they find laparascopically. Maybe you could pursue that avenue??? I don't know, though. There is such a strong link between breast and ovarian cancer (even if you're BRCA negative like me) that I just wanted everything out. I wanted to save myself not only from getting a cancer there, but also (and maybe this is selfish and not a good reason) because I wanted to save myself from having to go through the worry again. I have enough worry everyday dealing with all the aches and pains that "could" be mets! I don't want another thing to add to my plate.
I was a basket case during this whole ordeal. I'm so sorry you are having to go through it. Please, please, please get the reports, though. My cyst did have some alarming features in it that made it more ominous. But maybe yours doesn't! You don't know until you get those reports! When you get them, I might be able to help decipher a bit--I did a lot of research during this nerve-wracking time!
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weety...I hear you on what you have to say about one moment being a "nursing Mom" and then the next moment having "breast cancer" and needing to immediatly stop nursing...living a totally 180 degree life frome where you were a month ago, after just being diagnosed... I understand about the "woulda, coulda, shoulda's." In fact my sister point blank explained the same thing to me as I was going through chemo about how those words affected her life.
I agree with the idea about having a total too. In fact both my husband and I think I should push for it if I still have the cyst when I have the u/s done in July...I guess we both have decided that we will deal with it then..unless of course, if I start having major pain "Down there"..but then that would change everything anyway.
It does make me feel better reading about how many women have had problems with cysts after having breast cancer treatment! And about how many of them are NEGATIVE for cancer.
I wasn't able to get the reports yet, but that is just because I was up all night with a eye teething 21 month old who didn't sleep because she didn't get her motrin before bed! Nice to know that some things don't change when it seems like everything else has.
Take care and I am glad I am not the only one who has gone through this.
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Well, I got a copy. It does not state anything more than with the Jan. 2010 U/S it stated a "1.9 cm complex cyst" on my Right side, and then April 6th it states "2.3 cm cyst with septum"
How much is that for the info with the trip across the city, then $2 for two pages of maybe 25 words on each copy of the report, and then leaving my debit card there? I knew as much as I know now.
What has me worried is that I am starting to cramp more on my right side...Maybe I am healing? It isn't severe cramping, more like menstrual like stuff. Who knows.
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Has anyone who has had the oophorectomy and/or hysterectomy actually ended up with a diagnosis of ovarian cancer ? It seems from these posts that the results are all benign....
Tx
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