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Ovarian cysts with septation - I am officially scared

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Had a PET/CT on 12/11 that was NED (yeah) but with a comment of a cyst on ovary.  Onc said "No big deal - but I think you should see your gyn for an ultrasound".  Had trans vaginal on 12/18 that ended in a uterine biopsy for thickening and a cyst on each ovary with a small septation in one.  CA125 drawn and came back normal at 28.  Biopsy negative.  Another Yeah.  Recheck today shows much smaller cyst with much larger septation.  The gyn said if I had not had all the other testing in December, she would be very worried about the results.  Just to be safe, she is sending me to the gyn-oncologist to review the ultasounds and get his opinion.  Thinks I will more than likely end up with a hysterectomy and wants him to do it "just in case he needs to do staging because it is much better to be staged at the time of the first surgery"  What the heck am I supposed to do with that.  Of course I lost it on the way home.  This was supposed to be just a baseline, not a diagnosis of anything.  Anyone else have issues like this with tamoxifen treatment?  I have been on it for 9 months.  I am not opposed to the surgery, just can not believe that it might be cancer.

Diane

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Comments

  • priz47
    priz47 Member Posts: 161
    edited January 2009
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    What does septation mean???

  • DianeE
    DianeE Member Posts: 30
    edited January 2009
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    It was explained to me that it is a division in the cyst, a separation in the cyst made up of solid material.  They want it to be fluid or open only, I guess. 

    Diane

  • awb
    awb Member Posts: 213
    edited January 2009
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    Diane--While on tamoxifen, I had  a large ovarian mass found on CT scan (taken due to severe abdominal pain) and they were concerned it was ovarian cancer. My CA-125 was normal, but the mass kept growing (was nearly 8 cm, seen on TVUS) and the gyn said it had to be removed. Fortunately everything turned out benign, but I ended up with a TAH/BSO with immediate surgical menopause due to the cysts rupturing.  If I had it to do over again, I would've gone to a gyn-onc for a 2nd opinion and temporarily stopped the tamox to see if the cysts would've resolved (my gyn said tamox didn't cause the cysts, but I'm not so sure about that)---perhaps nothing would've been different, but I'll never know now. I'm glad to hear you are going to the gyn-onc and getting that opinion, it's the wise thing to do. Praying you have benign results too.

    Anne

  • amsky
    amsky Member Posts: 2
    edited January 2009
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    I had the same thing as awb.  The onc/gyn followed an ovarian cyst through ultrasound for 8 months.  I appeared to be fluid filled, then all of the sudden they became concerned because it had became septated and grew pretty fast.  I had a complete hysterectomy Dec. 10 and feel better than I had in years, except for the fatigue and overwhelmed feeling, which I think I have now resolved with celexa.  Apparently something that was removed was affecting my bowels and causing tremendous back and hip pain.  I take tamoxifin, as well.  My cyst was benign and I hope you have similar results. 

  • burger
    burger Member Posts: 1
    edited March 2009
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    what is celexa? 

    I am in the same situation as Diane.  I just had my CA125 and uterine biopsy done this past week.  My ob said it was likely that the cyst would not go away on its own because I stopped menstruating after chemo last year and never got it back.  My ovary and cyst are about 6 cm right now, and my uterine lining is thickened quite a bit.  I'm only 35 as of Wednesday, and will still be under 40 when my five years of tamoxifan are done.  So I am reluctant to just get a hysterectomy so young, especially because my cancer was extremely ER and PR positive, and I am not a cadidate for hormone therapy.  That said, I'd rather have surgery than have to go through chemo again, and if these are pre-cancerous conditions, I want it out BEFORE it turns into cancer. 

    Diane, how did you make out, what did you decide to do? 

  • motheroffoursons
    motheroffoursons Member Posts: 80
    edited March 2009
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    I just had a TAH/BSO because of a 14 cm cyst on my ovary.  The Dr. watched it for 2-3 months before scheduling the surgery in hopes it might get smaller.  It became larger.  It too had different sections. One test indicated it could have been a "borderline tumor of low malignant potential.  It was a dermoid cyst.  Everything in the world was benign, even though I have a cut from my pubic bone to my belly button.  Benign is a beautiful word.

    Don't worry about it yet.  Your CA125 was okay, and they use that as a baseline.  It is only indicative if it rises.  There are lots of cysts on the ovaries that are not cancer related.

  • DianeE
    DianeE Member Posts: 30
    edited March 2009
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    Burger and Mom of 4 sons;

    I had a repeat of the ca 125 before we saw the gyn-onc.  It was 41, up from 28 in December.  So, that was a negative.  The gyn onc said that I had 2 options.  First was to go in and remove the ovary now and do a frozen section while I was under.  If negative, I could be done or proceed with a minimally invasive hysto.  If positive for cancer, I would have a total abdominal hysto with staging at that time.  I am BRCA negative, so my risk for ovarian ca is only slighlty higher than that of the average 41 year old woman.  My second option was to wait 3 months and repeat the ultrasound and ca125.  We settled on waiting 7 weeks and repeating everything April 7th.  I know it is a risk, but I could not wrap my brain around having the biopsy right away.  I work in the lab of an oncology center as a Medical Technologist so have much experience with what those ca125 results might mean as well as how they can be altered by cycle, cysts, and just plain old unreliable. Many patients with ovarian cancer have normal CA125 at time of diagnosis.  They are good for monitoring response to treatment, but don't think I would not have been happier for the CA125 to remain at 28 and not rise to slightly elevated!! I have told my friends and family that I am ok with my decision to wait, and I pray it was an ok decision.  The gyn onc said he would support either decision and would tell me straight up if I needed to go to biopsy right away.  My Med Onc, who I also work with, would rather have seen me go right away, but understands the choice I made. 

    Let me know how you are all doing.  Thanks for the words of encouragement.

    Diane
    Dx 7/7/2007, IBC, 2cm, Stage IIIb, Grade 3, 2/22 nodes, ER+/PR+, HER2-

  • Calif-Sherry
    Calif-Sherry Member Posts: 2
    edited March 2009
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    Did anyone's estrodial levels go UP withthe ovarian cysts?

  • DianeE
    DianeE Member Posts: 30
    edited April 2009
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    Just bumping this.  I have another repeat ultrasound on Tuesday and CA125 with results the same day.  Anyone else have similar?

    Diane

  • twogirls
    twogirls Member Posts: 3
    edited April 2009
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    I have been on tamox for a little over a year and stopped having my period in December 2008.  Beginning in about January 2009 I started having some pelvic pains which dissipated, but could still be felt when applying pressure to the pelvic area.  Just last week I had an ultrasound which found a complex cyst with septation with a slightly thickened wall.  It is 5 cm at its greatest dimension.  I had the CA 125 on Friday and it came back at 8.5.  I had a bilat mast and am wondering if the lack of breast tissue is why it is so low.  I did read that tamox is a risk factor for ovarian cysts and that breast tissue is one of the tissues that produces the marker they use for the test.

     Can anyone tell me if having a septation with a thickened wall is bad? Also, they mention a mural nodule and I can't find that term anywhere on the internet.  THANKS, Teresa

  • Ked1019
    Ked1019 Member Posts: 3
    edited April 2009
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    I am reading this and I am terrified. I am high risk for breast cancer. I am under the care of a Onc and do breast survelience every 6 months. I am to rotate mamo/mri every 6 months but have not had an mri that was clear so I am still having them every 6 months. Tamox was suggested back in Oct due to my gail model rating and the findings of my biopsies. Yesterday the dr. questioned why I had not started the tamox. Well I have been dealing with a complex ovarian cyst for 1 year. It has only grown to 2.8 cm but it is septated and they think just full of blood and some debris. The gyn said nothing to do right now but that the tamox would help supress the estrogen making and the egg release from the ovary would be suppressed hence no more cyst will be made. SHe will repeat my u/s in October to see if the cyst has gone away or if it gets bigger she will do a full hysterectomy. She told me the tamox would help take care of the ovarian cyst issues. Now I am reading this and not too sure. Why am I so scared to take Tamox? I read here on bc.org that some take effexor with their tamox. Would it be wrong of me to jump the gun and ask for it before I know how I will respond to tamox.

  • lopsided_blogger
    lopsided_blogger Member Posts: 10
    edited April 2009
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    I have almost the same thing--except my oncologist called it honeycombing instead of septation--my guess is it's the same thing? I have two honeycombed atypical cysts that have irregular borders and slight thickening. It's very possible they've been there eight months and are growing. I meet with the gyn who ordered the test on Monday--basically she said we either wait six weeks and test again or she could remove the ovary. I don't really like either suggestion and want to see an gyn/onco too, which means getting a referral out of town for me. My CA125 was slightly elevated at 37, but onco said any kind of cysts could do that. He actually thinks the chances of it being cancerous are low, and thinks maybe instead of a gyno oncologist I need to see a gyno endocrinologist to see if/why/how chemo and tamoxifen might be messing with me. (I'm about a year and a half post chemo and have been on tamox 18 months).

  • twogirls
    twogirls Member Posts: 3
    edited April 2009
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    I heard from my gyn onc today.  She said I can moniter and do an ultrasound in three weeks or proceed to removal of the ovary/cyst.  I have canvassed friends and family about what to do and so far the majority say to have it removed.  I am inclined to agree having already dealt with BC, I don't want to let something possibly only get worse.  I'm interested to hear if anyone else has comments to share....

  • DianeE
    DianeE Member Posts: 30
    edited April 2009
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    I had a follow up with my gyn-oncologist for trans vag and abdominal ultrasound and CA125 on Tuesday.  My CA125 was slightly elevated last time at 41.9 with a septated 5 cm cyst.  Well, the news was great.  CA125 dropped to 18 and that cyst is gone.  I have a simple cyst now that he feels is related only to my age (41).  The plan is to repeat everything again in 3 months and if continues to be the same, I will not need to see him again.  He did say that no one can ever say a cyst is nothing for sure without biopsy, but he is not at all concerned.  The CA125 is really not a reliable test for diagnosing ovarian cancer as many factors can change the value.  I had my period when the result was 41.9, did that cause it, maybe.  My med onc supports whatever the gyn onc wants to do and I really did not want to have surgery.  Some people say, ah, just get it all out.   I am BRCA negative so I am going to go with plan B and follow with another u/s and labs and see where we stand in July.  Good luck to you all.  I know how stressful this is to wait and wonder.

    Diane

  • Angeleki
    Angeleki Member Posts: 1
    edited May 2009
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    I am 42 yrs old. When i was 39 i had a hysterectomy due to fibroids. No cancer...At that time Dr. found a small cyst 1cm on overy, i went back for the next year due to pain and he said that was normal. Fast forward...I delt with minor pain thinking it was the "small" cysts. Now i go for annual...an ulta sound finds 2 big cysts..one 12cm &8cm. i am so scared.  the docter said it is not an Emergency for surgery...but sugery is 7 days out. i am so scared it is Cancer....i have all the symptoms, has anyone had similiar and came out ok?

  • renata
    renata Member Posts: 9
    edited May 2009
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    I had a pelvic ultrasound 2 weeks ago and was told that I have a big ovarian cyst (9 cm) I think it has been caused by the tamoxifen, but given my personal and family history the GYN ordered a pelvic MRI and bloodwork for CA 125 marker. What symptoms do you refer to? Try to stay calm Angeleki, cysts very rarely are anything but cysts.

    Best wishes.

  • nichola
    nichola Member Posts: 3
    edited May 2009
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    Hi

    After a follow up US to check on fibroid, they found a 5X3cm cyst:  Follow up was 8 weeks and last week's US showed cyst had reduced size by 1cm, but 3 more grown on other ovary.  ALL 4 cysts are showing solid masses, yet my GYN just said he'd check again in 3 months!  (Waiting for CA125 result....).

    I'm peri-menopausal and as I understand the risk for ovarian cancer is only really strong post- menopause and tamox causes cysts?  Should I be seeing an onco GYN?

    Nx

  • awb
    awb Member Posts: 213
    edited May 2009
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    Angel----the vast majority of ovarian cysts turn out benign. Unfortunately, we don't have very good tests  for ovarian cancer. The CA-125 is fairly unreliable, especially in premenopausal women, and can be elevated for many other reasons than ovca. The TVUS images the ovaries aand can help determine if it looks solid or fluid filled, but nothing short of a biopsy can determine for sure whether or not an ovary is cancerous. Praying you get good benign results soon.

    Anne

  • lolo720
    lolo720 Member Posts: 4
    edited December 2009
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    This is my first time posting but I have been reading since my diagnosis in October.  I've learned more here than from the Drs.! 

     I had a lumpectomy on 12/3 and unfortunately came back with unclear margins.  I'm scheduled for a second surgery on 1/14.  I'm praying this will work.  If they don't get clear margins this time, then I'll have to do a mastectomy w/recon which scares the daylights out of me. 

     I started tamoxifen on 11/3 prior to surgery as part of a clinical trial to see if it would shrink the tumor.  Over the last 3 weeks or so I have been experiencing low back pain, pelvic pressure, cramping and my period was a week early.  I have to explain that I am one of those women who had a partial hysterectomy, still have ovaries, but they could not completely take the entire uterus due to adhesions from 2 prior c-sections attached to my bladder.  So, I am left with just enough of a nub to have a mini period each month. 

    The pain was severe enough for me to call the onc and they said call the gyn which I did and I had a TVUS done.  Yesterday, I got the results and they are saying that I need to see a gynecologic onc.  I have a large complex cyst on my left ovary that can be a cancerous type.  The gyn said it would need to be aspirated and then removed surgically.  If I'm going through that then I want both ovaries removed.  I can't believe that I'm not even done with my breast surgery or treatment and now I have to deal with how to handle this new cyst problem.  And of course, I'm terrified that it is ovarian cancer. 

     I'd love to be able to say that I am dealing with this as brave, dignified, and positive as so many of you sound.  But, the truth is I'm a total mess to the point that I'm embarassed since I always thought I was such a strong woman.  I truly hope that some of your good attitudes rub off on me.

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 55
    edited January 2010
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    Welcome lolo. I'm sorry about your recent breast cancer diagnosis, and am glad you found this forum. I wish you well as you proceed through it's treatment.

     Regarding the ovarian cyst, given your history of still bleeding (premenopausal-darn, that's too bad they couldn't get everything out), your starting Tamoxifen in November, prior to your lumpectomy, and your significantly increasing pelvic pain suggesting enlargement of the cyst that was found, it's very possible that at operation this will be a benign cyst. I'm sure they told you our premenopausal ovaries can develop cysts on Tamoxifen. Certainly your history suggests active enlargement since Tamoxifen, which goes more along with a benign process. Complex cysts can have septations too. 

    I'll be rooting for you on this as well as on your subsequent breast lumpectomy pathology. I hope you'll post and let us know how you do. Did they suggest stopping the Tamoxifen in the interim, so that ovarian cyst doesn't cause even more problems (like falling over on itself due to it's weight (ovarian torsion)? Just a thought you might wish to discuss with your doctors.

    Good luck,

    Tender

  • lolo720
    lolo720 Member Posts: 4
    edited January 2010
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    Can anyone help me understand my radiology report from my TVUS?  I do have an appt.with the gyn/onc on Wed. but am going crazy with not knowing what this means.  I'm so afraid of ovarian cancer.

    My right ovary has a follicle cyst about 3 x 4 x 3 cm - no separate right adnexal masses.

    Then it says, large multilocular cystic structure in the left adnex measuring at least 13.7 x 9.8 x 13.6 cm (!) with internal septations as well as questionable nodular structures. 

     No free pelvic fluid.

     Under "IMPRESSION" - its says the left adnexa contains a large serpiginous multilocular cystic/septated cystic structure which may represent hydrosalpinx.  MRI is recommended for complete evaluation.

     The results of my CA 125 were 17 and I also was told I have a UTI.

     I know a lot of you ladies have had experience with complex cysts and any light you could shed on this for me would be so helpful.

     Thanks!!

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 55
    edited January 2010
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    Only your personal physician can give you medical advice, and this is so very important to keep in mind on a forum such as ours.

    You pretty much said it above, your sonogram suggests possibly it is your fallopian tube which is swollen (serpiginous multilocular cytstic structure which may represent hydrosalpinx), possibly admixed with some cystic/nodular left ovary to make a 5 by 4 by 5 inch (approximately) mass.

    Sometimes this can be from infection and other times from benign and non-benign growths. Your CA 125 is in the normal range but I don't know how that impacts your situation.

    Ovarian complex cysts are like breast masses: until they are out and seen by the pathologist, there is no way to tell what you are dealing with certainty. I'm sorry you're going through such a tough time, and hope your urine infection clears up soon as well as you have some answers to reduce your stress.

    Best to you,

    Tender

  • lolo720
    lolo720 Member Posts: 4
    edited January 2010
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    I did see the gyn/onc yesterday and he does not think this cyst is from the Tamoxifen.  (He's the 3rd Dr. to tell me that Tamox does not cause ovarian cysts!)  It does have to come out though. 

    After I have my 2nd lumpectomy on the 14th, I will then be having the ooph two weeks later on the 28th.  Since the Dr. will already be in there, I feel they may as well take everything that's left.  Thankfully, he does not think this is cancerous.  He told my husband there is a greater than 80% chance that is is not cancer.  Of couse, I worry about the other 20%.  I won't be able to relax until pathology says it's benign. 

     If the lumpectomy doesn't get clear margins again, then I'll be back in for a mast w/recon. after I heal enough from the ooph.  They are going to try to do the ooph laprascopicaly but can't guarantee due to the size of the cyst and whatever else they have to deal with in there.  I'm hoping they can so I can avoid a bigger vertical incision.  

    And here I thought I'd be starting radiation soon.  Doesn't look like that's going to happen for a while.

  • awb
    awb Member Posts: 213
    edited January 2010
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    lolo--my gyn also said my ovarian cysts were not from the tamoxifen. Mine ruptured and kept on growing, so I ended up with a TAH/BSO (gyn said mass was too big for laproscopic surgery--nearly 8 cm--and they wanted to open me up and "look around" in case it was cancerous--fortunately everything turned out benign) and immediate surgical menopause. My incision was horizontal, about 7 or 8 inches across.  They told me the majority of these are not cancerous. I was going to have him try to save the other ovary. but it turned out there were cysts already forming on that side as well s in the tubes, too. Best of luck to you.

    Anne

  • weety
    weety Member Posts: 371
    edited February 2010
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    Okay girls, I just got done reading all of these posts.  I'm scared as H**** because they just found a suspicious cyst on my ovary as well.  I just finished my chemo (TCH) right before Christmas so I was slowly (but surely) starting to put the pieces of my life back together.  I started making all those routine appts with my regular docs about how to get my body back to being healthy after all the crap that was put into it, etc. and also went to see my Ob-gyn for my yearly pap.  My mom died of uterine sarcoma a few years back, so in light of that and in discussing my breast cancer and hormone status he decided to have me go for a pelvic ultrasound since a possible oopherectomy was in my future (I had a pelvic ultrasound done back in 2007 and had a small simple cyst, but nothing else, so I hadn't had one since).  I had no weird symptoms or anything, this was pretty much going to be a routine examination, or so I thought.

    The results came back that I have a complex cyst on my right ovary with a mural nodule.  It has "low level echoes/septations/low level echoes and septations/debris/a mural nodule."  (I copied it exactly the way it was written on the report--I can't figure out what it means the way it was written)  Anyways, my ob-gyn is "quite concerned" (his words) with this cyst based on the fact that it is complex with a nodule and that I am currently in chemo-induced menopause.  I haven't had any periods since starting chemo 6 months ago, AND before that I was breastfeeding so I wasn't having periods then either!  (I did have one period right in between stopping breastfeeding and starting chemo) So how the h**** did it get there?  How could it be cancerous when I just had 6 rounds of chemo--and I think it's the same kind of chemo (taxotere & carboplatin) that they use for ovarian cancer!!! 

    Anyways, he referred me to a gyn onc and I will be meeting with him on March 10th (I love how they make you wait--don't they realize what anxiety does to us?)  I went and had my CA-125 done today and will be going by on Monday morning to pick up the results. 

    Could this be breast cancer mets?  Which would be worse at this point--bc mets or ovarian cancer?  From what I know about ovarian cancer, the prognosis is not so great.  I think bc mets might have the better odds. 

     Oh yeah, and I want to point out that I am not on tamoxifen or any other hormone therapy yet since I'm still doing my radiation.

  • mscowboy22
    mscowboy22 Member Posts: 2
    edited February 2010
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    After reading all these posts, it is amazing how much we all have in common. 3 weeks ago, I got my period and was bleeding heavy!! Oncologist told me to stop taking tamoxifen and go see my gyn. I had a biopsy of my uterus which thank goodness came back benign. I have a 2,5 cm cyst on my left ovary that is complex. My CA125 was 34. I didn't question. I am having a hysterectomy next Wed. I figure this just takes away one concern. Hoping there is no cancer there.

  • weety
    weety Member Posts: 371
    edited February 2010
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    mscowboy, thanks for replying.  I am glad I'm not the only one going through this, well, that didn't come out exactly right, but you know what I mean!  I'm not on tamoxifen, though, so I hope that doesn't mean mine has a worse chance of being benign!  Did you have the pelvic ultrasound to diagnose your cyst as complex?  What did your ob-gyn and onc say about it?  I see you're having the hysterectomy this week.  Are you removing both the uterus and ovaries?  How long from the time you were diagnosed with the cyst and bleeding did you get the appt for the surgery?  How did they (and you) decide what to do? 

  • awb
    awb Member Posts: 213
    edited February 2010
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    unfortunately, my gyn said the CA-125 is fairly unreliable, expecially in premenopausal women, but it's the only test we have (along with the TVUS).  They like it to be below 35, actually even below 21, but many benign conditions can cause it to be high. I was hoping they could go in with a laproscope and biopsy the ovary, but he said the ovaries are located too deep in the pelvis and could only be biopsied when removed. I hope and pray that soon they come up with an non-invasive way to reliably diagnosis ovarian cancer earlier.

    Anne

  • weety
    weety Member Posts: 371
    edited February 2010
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    thanks awb--I saw that your surgery ended up with a benign outcome!  Yay!

  • trigeek
    trigeek Member Posts: 24
    edited February 2010
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    Same thing happened to me(47 years young).. after being in chemopause for 1 year on tamoxifen suddenly my periods came back with heavy cramping( I never cramped before) saw the gyno.. who freaked out when she saw the us.. cysts with septations thickened uterine blah blah everything above.. referred to an oncology gyneco (my medical oncologist said oh that is nothing Tamoxifen does that) .. the  oncology gyneco removed it laparoscopically after ensuring it was nothing.

    All is good now.. except the stupid menopause weight gain powered by Femara.