atypical ovarian cysts after bc treatment

lopsided_blogger

Has this happened to anyone or any advice? I posted it to my blog at beyond-breast-cancer.blogspot.com and also would really love any insight from you ladies:



Atypical Ovarian Cysts--Nothing or Something?



So what do you do when you're a post-treatment bc patient and you find out you have two atypical cysts on your left ovary? One's probably been there eight months and is growing.



The bc oncologist guesses they are most likely benign (because he says usually these kinds of cysts are), but there's always a chance it could be cancer. In my case, it could either be bc spread to the ovaries or a new cancer of the ovaries (if I have a genetic mutation, which I've not been tested for).



The oncologist also says it's out of his league because basically they deliver chemo to tumors; the ob/gyn would know more. When her nurse called with the results, she said the Dr. said we could retest in six weeks and see what's there or she could take out the ovary. Geez, I hope she has some more scenarios than that when I meet with her on Monday. If it's been there eight months, why would we wait six weeks to test again--and then what? And why would I just say, "Okay, take out the ovary."



I want to see a gynecological oncologist (someone who knows both gyn and cancer) and figure out how we rule out cancer without an invasive procedure. My basic philosophy is: I can live with anything that isn't cancer--ha, ha, kind of punnish, maybe I should make it a t-shirt.



My oncologist thinks I need to see a gynecological endocrinologist to figure out why/how/if my long chemo stint and tamoxifen taking is causing this wackiness and what we can do about it. Quitting tamoxifen, he says, is NOT an option.

Anonymous

I developed a large ovarian mass while on tamoxifen--found on CT scan after severe abdominal pain---they did CA-125 blood tests and transvaginal ultrasounds--thought it might shrink down on it's own but it didn't and kept growing larger (8 cm)--suspected it might be cancerous--ended up with a TAH/BSO due to ruptured ovarian cysts with immediate surgical menopause (no fun) but everything was benign. Feel free to PM me if you like with any questions.

Anne

raro

I can relate a LOT to that. Apparently, the tamoxifen sometimes can cause ovarian cysts. I developed a grapefruit-sized one about 6 months after being on tamox. Fortunately, it looked completely benign, but I wanted it out. So they removed it laparoscopically, no problem. A year later, I feel bloated, get an US, and they find THREE more, all the size of baseballs, etc. So they remove them, and find one on the right (don't know why they missed it on ultrasound), The dr. said he could remove my ovary, but then I'd be in menopause with no hormone therapy, and I just didn't want to go that route. So he ended up removing 3/4 of my left ovary...which still works just fine, go figure.

Anyway, the surgery to remove them was quick and easy, and it saved my mind from worry. And it was the regular OB/gyn who did it all. They do things like that all the time.



Here's hoping yours will be as simple and benign!

Nichola

I'm in more or less the same position.  I developed all sorts of bloating, nausea, lower back ache etc which prompted a pelvic MRi - They found a grapefruit sized fibroid.  Had to wait 3 months for follow up scan to see if it was rapid growing and hey presto - fibroid OK, but this time found a 5 cm ovarian cyst.  I was told that they re-scan cysts after 6 - 8 weeks as they are supposed to disappear after a period.  If they don't disappear they either continue to monitor them or remove them... or as my Gyney has hinted remove the ovary/ies.

50% of pre-menstrual women get/have ovarian cysts.  Tamoxifen increases this happening several-fold.  95% of cysts are benign.  If mine is still there after I go back in May, I'm gonna have an ooperectomy!

marshakb

I've got something on an ovary too.  Onc does not think it is cancer, they found it on my PET/CT.  Comparing it to the cancer they did find he said he thought it was just a benign cyst maybe caused by the tamoxifen I had been on.    Best to you and keep in my what Nichola said, tamoxifen does cause this alot.  I have no idea why I still have my ovaries.  I'd sure like to have them sucked out, even had the  onc test for estrogen still coming from them and waiting to see how that test turned out.

tokmik

Good article! I loved it! it was very informative and a little helpful. Austin Radiation Oncologist.

S3K5

Tokmik,

Please don't advertise your services on this site!!

Beesie

tokmik,

You seem to be here simply to promote your company - 4 posts since joining and all contain a one sentence platitude and your url.  Did you know that this is against the guidelines of this board?

japarr33

I just got a diagnosis of ovarian cysts. I started taking tamoxifen beginning of May. about 3 weeks later i did a vaginal and transabdominal US. they found a cyst on each ovary about 2.6cm. Did biopsy and it was benign. Re-did the US in July and both cysts grew to 6cm. The gyn/onc just said he's doing surgery taking out the ovaries and the uterus. I am scared because I am just 35 and if the cysts are benign, why not cut them off and monitor? I have scheduled surgery but my gut is in doubt about this. The gyn/onc hasn't even explained what type of surgery, risks, side effects etc.. just that he's taking them out. Any comment or experience on this matter would be of great help.

swimangel72

Japarr33 - go for a second opinion before undergoing surgery. And do alot of online research - you could start with www.hystersisters.com - they have a great support community. Make a list of questions and be sure your gyn/onc answers them thoroughly before you agree to surgery. You may wish to start a new thread of your own in the "Surgery" forum in order to get more responses to your question. Good luck and may God's angels watch over you!

lopsided_blogger

japarr33,

I second the suggestion for a second opinion, preferably with a gynocological oncologist--someone who knows both gyn/onc and cancer. You ask some good questions in your post and you deserve to find a doctor who can give you answers that make sense to you.

As for an update on my case, I went to a gyn oncologist a couple towns over since our town doesn't have any. He was concerned and suggested surgery sooner rather than later. But the results of a pelvic u/s right before I saw him (that my gyn hadn't sent to him) indicated one of the cysts seemed to be smaller.

 So I waited five weeks, had another u/s and discovered the cysts have resolved. Yah!!!! At least in my opinion, if they can't explain why I have to hurry up and have surgery, I'd prefer to do some wait and see. And if there is a convincing reason for surgery, I'd still want the least invasive/less removed as possible.

Take Care

vhqh

I just had a full hysterectomy 3 weeks ago due to severe abdominal pain (3rd incidence of pain).  CT revealed a large mass but they were not sure what it was.  Path report came back as a 11 cm hemoragic cyst and a 4 cm met on my ovary.  I have been on Tamoxifen since February, 2008.  The met was an incidental finding, they really didn't think there was any cancer there but couldn't rule it out.  It's gone now though!

tiff2008

I totally believe in 2nd-3rd opinions before any type of major surgery!  Japarr-I hope you're doing okay today!

While we're on this topic--In the last month I've had some upper thigh pain along with a little bloatingness.  I've been on Tamox for a little over a year now and have only had 1 period in the last 6 months, if fact this leg pain started the same day as my last period (Aug 16).  After I was thru the leg pain got alot better, now almost 4 wks later the leg pain is back.  I do workout about 5 day/week and notice at times it hurts a little more afterwards.

I've got my qtrly onco appt this Thurs and will discuss it with her.  I'm glad I found this topic..sounds like Ovarian Cysts can deffinetly be a side effect of Tamox.  Will we ever be free.......

My thoughts and prayers are always with all of you.

Tiff 

jpernot

I just had an US on Friday which revealed a 7cm complex ovarian cyst.  I experienced pelvic pain after being on tamoxifen for only 6 days.  (Onc told me to cease tamox until cleared by the gyno) I'm thinking if I already had the cyst, the tamox could have aggrevated it.  Does that make sense?  I had an US one year ago and the cyst was not present then.  My gyn told me the ovary has to come out and he's alway been very conservative on the invasive procedure front.  He referred me to a gyn/onco.  I'm really upset about this.  I just had a mx 2 months ago. I've had 4 surgeries in the past 9 months and the thought of another just makes me want to cry.

SpunkyGirl

Here's my experience (if it helps):  I had a 7 cm cyst on my left ovary about a year into taking Tamoxifen.  They did a watch and wait approach on it, and it took six months, but it resolved.  Sometimes I think HCPs are just too quick to want to go in and take the ovary.  On the other hand, they always have to worry about malpractice, so who can blame them.  Honestly, I was glad I waited to see what would happen, but every case is different.  You should at least get a second opinion, and maybe even a third.  Good luck to you.  I can see why you are tired of surgeries....

Hugs

Bobbie

mshalto

Hi jpernot,

So glad I found this thread! I have a long history of small benign ov. cyst. Been on Tamox. since January--had a TVU in July and they found a 6 cm complex cyst--great! (:   As if we don't have enough to stress about...

Anyway, they said it looked benign but of course I'm worried. I'm 52 and my best friend died of ovarian CA..so naturally my thoughts drift to dark places.

Have you considered asking your onc. about ovary-suppressing shots, such as Lupron or Zoladex? They are both known to shrink cysts. I had my first Zoladex injection on Aug. 27 and put off my follow-up TVU till Oct. 23 to give the stuff some time to shrink the damn thing!

Because these drugs chemically induce menopause, there are side-effects, but I have been very fortunate in that I've had no hot flashes. I notice I have to work harder to keep weight off--but I guess there's a price to pay for everything, right?

I've also had an increase in my chronic pelvic pain since starting Tamox--I'm so sorry you're going through this!         ************************************************************************************,

Take care, Miriam

mshalto

Hi Bobbie,

I'm so glad to hear that your cyst resolved--that gives me hope!  I agree with you about the zeal to "yank"---my gyno. has implied that if my 6cm complex cyst gets bigger, out comes the ovary!

Not too thrilled about that, but maybe the Zoladex will at least shrink the bugger before my next US on Oct. 23.

May I ask if your cyst was complex??

Thanks,

Miriam

Husband_of_my_Best_Friend

I was so happy to see this topic.  I was so hopeful that we would be able to put my wife's medical issues behind us, but looks like we are not in the clear yet.  First, about 1 ½ years ago, at age 46, she was diagnosed with a triple positive IDC with 1 positive node out of 10.  Treatment was double mastectomy, TCH and tamoxifen.  She finished chemo last September (08), started tamoxifen in October (08) and finished herceptin in June (09).  About 8 weeks ago during an ultrasound, she was found to have a 2.5 cm complex cyst on her right ovary.  There are now 3 cysts and the largest is around 6cm and is mostly solid.  The other two are hemorrhagic cysts. 

Gyno wants to remove the ovary and do a D&C on the thickening endometrial lining.  He has also asked her go get a 2^nd opinion from a gyno oncologist.   Best case is that the cysts were caused by tamoxifen and they are all benign.  I take some comfort in knowing that the surgical treatment for ovarian cancer is a bilateral salpingo-oophorectomy and hysterectomy, which is not the current recommendation.   Any more hopefully stories?

motheroffoursons

I have been on tamox. 2 1/2 years.  Last fall. a MRI showed a complex dermoid cyst on my ovary.  A dermoid cyst is basically an egg cell that has gone crazy and grows without fertilization.  The gynecological oncologist waited to see if it would get larger or resolve itself.  It grew larger (and more complex) within the next 6 weeks, so they did the TAH, total abdominal hysterectomy to remove everything.  I know the Dr. thought it was cancer as she sat me down and gave me a cancer talk.  However, it turned out to all be benign, such a beautiful word.  The Dr. said it looked exactly like a large baked potato.  It may have been caused by Tamox, I will never know.  It is gone, and although the surgery was not a walk in the park, it is fine now.  Still just taking tamoxifen.

jpernot

I saw the gyn-onc this week for my 6cm complex ovarian cyst.  My reg gyn had told me that the ovary had to come out.  The gyn-onc said we can get more info from an MRI and THEN make the decision about surgery.  I am so glad that there is a non-invasive way to get more info on the cyst.  I was only on tamox for 6 days when I had the pelvic pain, so they feel the cyst was already there and aggrevated by the tamox. 

mshalto

Hi jpernot,

So glad your gyn-onc didn't jump the gun re taking your ovary out! I'm almost certain that my gyn. wants to do the same thing--I also have a 6cm complex cyst. Does that make us "cysters"??

(Sorry--just slightly loopy from a long day)!

Good luck with the MRI--are you having it soon?  My next transvag. US is end of Oct.  and I am hoping that it will have shrunk by then.

Take care,

M.

jpernot

Hey M - Cysters!  I like it!  I'll take a dose of humor wherever I find it!  The MRI is Oct. 6, follow up with the gyn-onc on Oct. 8th if he has the report by then.  - Jude

mshalto

Hey Jude! Sorry---bet you haven't heard THAT before:)---just checking in to see how the MRI went. Hope you're feeling good!

jpernot

Hey M, I never tire of hearing "Hey Jude."

Well it is not what I was hoping for.  The gyn-onc said there is malignancy potential.  I am scheduled to have both ovaries and tubes out laproscopically on November 4th.  Needless to say, my family and I are all stunned because we are still not quite over my mastectomy and reconstruction of three months ago.

Breast friend and cyster,

Jude

mshalto

Wow, Jude--what a drag--and so soon after your last surgeries. Drat!

Sounds like they're being extra-cautious...better to take everything out so ovaries don't have a chance to further misbehave and create more worry. Glad they can do it laproscopically--much shorter recovery time. Is the procedure day surgery where you live?

Take care, Cyster...

M.

scrapmom40

Jude - I just wanted to say good luck with your surgery in November and I will be praying for B9 findings.

 Take care of yourself.

cherneski

Hi Ladies, so glad I found this thread.

After my bi-mast.  I had a PET scan that showed a 4.7cm on right ovary.  I have always had cysts on my ovaries since I was a teen.  PET scan does not show cancer.  But of course now I am a bit more frightened, as my cancers started with what they thought were cysts.

I want them to take my ovaries now, as to me it is just another place for cancer to grow.  What are the risks and benifits of removing them?  

I just finished chemo.  Onc said once I am done with Rads. I will go on tomoxifen then get another scan.  I am scared to wait.  I watched and waited with the cysts in the breasts for 6 months and ended up stage 3.  Should I push of a PET sooner?

Thanks Deb

Hugs

jpernot

Deb,

Did they give you any qualifiers on the cysts?  Simple or complex?  The deciding factor on mine was it was complex (not just fluid, solids as well) and an "enhancing mural nodule" which means a growth in the cyst developed it's own blood supply.  Doc was not happy about that.

The gyn-onc told me the risks of removing the ovaries in a young woman (I'm 42) is osteoporosis and heart disease.  (of course the menopausal side effects as well)

He gave me a choice to wait and watch, but he recommended removing the ovaries and tubes.  I just can't live with uncertainty after going through a mastectomy.  I'm going with the surgery.  Any cancer is scary, but ovarian really freaks me out. 

I'm not sure about the PET scan since I haven't had one, but the gyn-onc did an MRI with and without contrast to get more information on the cyst. 

Good luck with your decision.

Jude

weety

I'm bring this topic back up to the top again.  I just finished my chemo treatments in December, and just got the call from my Ob-Gyn today that they found an abnormal nodule on my right ovary.  I haven't actually seen the report yet, but Ob-Gyn wanted to refer me to Gyn-Onc based on my breast cancer history.  My Ob-Gyn kept saying that it could be a cyst, but because chemo put me into an induced menopause that I shouldn't be releasing eggs.  He seemed puzzled by it, but told me that what concerned him the most was the usage of the word "nodule."  Okay, so now I'm freaked.  Does breast cancer metastisize to the ovaries? I thought it goes to main organs--liver, lungs etc.  Or is this possiblity a 2nd cancer?  Would the chemo have done anything weird to make my ovaries have cysts in them 2 months from finishing chemo?  Man, oh man.  One more thing to worry about.  Plus, isn't the chemo for breast cancer often the same for ovarian?  I just had TCH--I think that's a common ovarian regimen, too.  How could I have something there just 2 months after poisoning my body with chemo?

weety

I picked up my report and this is what is says, "a complex cyst is visualized in the right ovary measuring 3.2x2.9x2.4 cm.  This cyst demonstrates low level echoes/septations/low level echoes and septations/debris/a mural node.  This cyst has a mural node. There is also a small amount of free fluid in the cul-de-sac."

Ob-gyn has referred me to gyn onc whom I will see on march 10th.  He said it is a "suspicious."   I'm freaking out here!  HELP someone!

mmm5

Weety

I am so sorry you are going through this, try to take a deep breath.

First most cysts are benign and I have had 2 since becoming menopausal after chemo. Fluid is most always associated with a cyst. Where on the report does it refer to nodule? (I think you mentioned that earlier)

2nd Try and call the Gyn/Onc and get in on waiting list explain your history and how much you need to get in earlier. Maybe even a preliminary phone consult prior to appt to review the ultra sound. You could also have your Onc order a pelvic MRI that will tell you definitively what it is.

Finally I can't tell you how many women here present with cysts after treatment and it is benign, I dont think I have ever read of someone having Ovarian Cancer right immediately after BC it would be odd. I think you told me you are BRACA negative so your chances are even lower for ovarian cancer.

I am thinking of you and understanding just how you feel, last year I had to have a brain MRI just for baseline as it was forgotten during initial testing. It came back with a "interesting cyst like" spot. I had to wait to have another doc review films for 5 weeks and just about had a nervous break down, it turned out to be just that a cyst.