Tamoxifen and ovarian cysts

msnurse133

Tamoxifen and ovarian cysts

msnurse133

I started tamoxifen in early Nov and about 4 weeks later had to have my ovary removed related to a very painful 8 cm cyst. I have stopped taking it (my onc. says there is no relation) I disagree as I have read while it is not common it can and does occur. I go to onc. in 2 weeks to discuss this. Has anyone had anything similar. Also the hot flashes are brutal I am thinking of trying wellbutrin any thoughts on that would be appreciated.

TenderIsOurMight

A good number of women on this board have developed ovarian cyst problems while on Tamoxifen. We know Tamoxifen does not inhibit ovulation, hence the drug makers warning to use a barrier contraceptive. I looked at Tamoxifen's effect on the brain center for ovulation (the hypothalmus, pituitary axis) and Tamoxifen can have the effect of keeping our FSH/LH levels low, probably due to the rise in circulating estrogen which occurs while on Tamoxifen. This too may be related to ovarian cyst development, if a spiking FSH/LH pattern occurs due to your own menstrual status, rather than a constant linear pattern which may reflect ovarian quietude.



As to the Wellbutrin, also known as Bupropion, well it turns out that it may inhibit the breakdown of the Tamoxifen into the second and necessary active metabolite which blocks any potential ER+ cancer cells from being stimulated to grow. Lots of discussion here on this if you browse through the hormone thread or type in CYP2D6, the major pathway for Tamoxifen breakdown. Some feel Effexor is an anti-depressant with the least interaction with Tamoxifen.



Welcome to bc.org. I see it's your first post. Sorry for your diagnosis of breast cancer. You've had recent problems on Tamoxifen, and recent surgery, so please post as you wish. Lots of good support here from women and men who have traveled this path.



I hope this helps you some. Soon others should come along to help too.



All the best to you,

Tender

wallycat

Tamoxifen was originally, as I understand, used as a fertility drug....hence, encouraged ovulation. I am not surprised by the cyst.

I can feel myself ovulating, but I have not had a period (some spotting 3 months after)...I shudder to think what is going on with my ovaries

betsy13

Hi,

I was dx in Jan 07 with DCIS stage 0 grade 2 @ 46....& pre-menopausal.....did lumpectomy in Jan 07& rad March-may 07.....but OH the struggle with taking Tamoxifin (and don't ya just love all those people who say to you ) OH MY GOD WHY WOULDN'T YOU TAKE TAMOXIFIN....WOULDN'T YOU WANT TO DO EVERYTHING YOU COULD TO PREVENT ANOTHER BC (They usually don't have or have had BC)??? ok I say YOU TAKE IT THEN;)  Anyway....I started in Sept 07 and in Oct at my annual Gyno appt. I had some discomfort during exam....I thought it was due to ovulation, but my Gyno wasn't comfortable so he sent me for a transvaginal US.....which showed OK ovary, but 1 uterine polyp.....He followed up in his office with a saline US 3 weeks later....which showed 3 more for a total of 4....so off to surgery....all b9....but now he feels it may have been from Tamoxifin.....Med. Onco is not convinced but both will monitor closely and if otherwise no irregular bleeding or other symptoms will do yearly VUS....and if necessary switch me to Evista (not sure I want that) I have noticed since starting Tamoxifin that as soon as my period ends I feel like I am ovulating....I feel pressure and low back pain....more so than before I was on Tamoxifin....now from other posts I wonder if it is ovarian cysts.....anyone else have problems with uterine polyps? OH and I do acupuncture for SE and it has worked great....it has cut down on intensity of night sweats....and so far no Hot Flashes....or mood swings....also loss weight... 

Betsy    

Beesie

Ovarian cysts do show up on this list of Tamoxifen side effects, although it says that the occurrence rate is less than 3%.  Interestingly, it also lists uterine polyps at less than 1%, but from what I've read around here, the rate is occurrence seems much higher than that.  Hmmm.....

http://www.bccancer.bc.ca/HPI/DrugDatabase/DrugIndexPro/Tamoxifen.htm

The summary of side effects from the website above is easier to read, but for those interested, here's some more detailed info from various Tamoxifen clinical trials.  The conclusions are the same - ovarian cysts come in at about 3% and uterine polyps are less. 

http://www.rxlist.com/cgi/generic/tamox_ad.htm

betsy13

Beesie,

Thanks again for all your info.....how do you find all those informative links???? I really appreciate your knowledge and responses....

Betsy

msnurse133

Thanks for the responses. Betsy it seems as though we are having similar problems. I was also premenopausal at 45. I had to have hysterectomy and one ovary in 04 (unrelated to br ca) so now I am totally without "my parts". Had I known the flashes would be this bad I would have begged the gyn to just remove the cyst! I started the wellbutrin only 4 days ago. I have also read about effexor but I am concerned with the weight gain I already have gained about 10 pounds. Interesting regarding the effects with tamoxifen. I couldn't make it through the RT as I kept getting seromas and having to have them drained. I have to have some quality of life and frequent mammo's will have to be enough. Has anyone done research on holistic or homeopathic for the flashes? I had tried accupuncture for the breast pain and I feel it was helping but it just got to expensive.

betsy13

Hi msnurse133,

I see a MD, PHD for "counseling" he is western medically trained and Eastern trained in acupuncture....my insurance won't pay for acupuncture, but they will pay for "mental health" unlimited.....he is out of network for me..so I submit and insurance co reimburses me...I end up paying $35 out of my pocket each time...and quite frankly he is worth the $120:) I absolutely swear by acupuncture and also feel it is keeping my immune system healthy:)....see if you can do a search and find a psychiatrist (like my guy...who can dispense meds and listens really well:) who also uses acupuncture.....I am not on any meds other than the tamoxifin.....the rest is supplements...daily multi vitamin, D3, omega-3.....Hope this helps.....What state/region are you in??

Betsy

wishiwere

Does anyone have a site that shows information about the relationship between tamoxifen and wellbutrin? 

chemo072

I wrote up what I found on my blog.  Search for "wellbutrin", various posts with links will come up.

Basically, according to the flockhart list, wellbutrin is a strong inhibitor of tam. metabolism.  So, if your metabolism is like traffic flowing well, then an inhibitor basically puts a freeway barrier in that lane of traffic, keeping it from flowing.  Not good as I understand it. 

msnurse133

I live in Northern New Jersey. The Pain doc I use (who I love) also does acupuncture but it is not covered. I was going to an RN who also does it. I loved it because being an RN myself she was able to help me understand the Eastern philosophy based on our Western education. I need to look into it more but now I am fighting my surgeon about having a mammo. I still have pain so I am very concerned about the procedure setting me back. The surgeon feels I should be able to "just take a motrin and a percocet" I have a problem with that response. I asked for an MRI and was told they are very expensive (to which I replied...and?) My case manager at the insurance co doesn't have a problem with approval. I just don't get it...I can appreciate that a mammo might be the best to compare but wouldn't you think an MRI is better than nothing? My pain doc said she was going to try and talk to the surgeon. Anyway, thanks for letting me vent it really is so frustrating and even though I have great support (my husband and sister) it just helps to vent to a fellow "sister"

VBG

I have been on tamox since Dec '06.  It has not worked for me in that a spot of my original bc was not removed and continues to grow despite tamox and rads (long story). 

I am 47 and premenopausal but have not had a period, due to tamox, since april 07.  Started experiencing pelvic discomfort and after reading stuff on these boards realized that ovarian cysts and endometrial problems were a SE of tamox.......I have both!  Whole new set of problems and possible surgeries to deal with!

I have stopped the Tamox as of yesterday since it was not helping me anyway.

Sorry to be so negative but I continue to be one of those on 1-5% of women for almost everything.....rads not working, tamox not working, SEs, etc!

Valerie

stahr

I had been on Tamoxifen for 5 weeks and developed cysts on my left ovary.  It's very painful and inhibiting my activity.  I am  going to a GYN to see what can be done.  I will continue to take the Tamoxifen for now.  It is dragging me through menopause.  I do have hot flashes.   What a drag to think of another surgery after recovering from a masectomy in November.  ~Stahr

phoenix54

you could try gabapentin for hot flashes - worked awesome for me - with this med the hot flashes disappeared completely. i am taking a break from tamox while we decide what to do about the uterine polyp and lining build up that happened over 2 years. while on the break NO hot flashes.

Anonymous

msnurse----I developed vague abdominal/pelvic discomfort  after taking tamox for about 6 months.  Mentioned it to a few different docs  (onc/gyn/GI) over the next several months; they  weren't concerned as physical exam was negative and my complaints were inconsistent and non-specific. Finally, pcp sent me for CT scan after a bout of severe pain; showed a large ovarian mass. Gyn sent me for CA-125 blood test and transvaginal US as he was concerned about ovarian cancer. Long story short--I ended up with a total abdominal hysterectomy due to multiple large ruptured ovarian cysts; fortunately everything was benign.   My gyn and onc still insist that tamox didn't cause it; my gyn wasn't at all concerned with the small uterine polyps I developed. Perhaps I was in that small 3%, who knows.  I actually still continue to take tamoxifen, despite all that, since it is the best preventative medication for my situation (LCIS). Any SEs that I have now (hot flashes, insomnia, achiness) onc feels are more related to my loss of ovaries rather than the tamox, I think it might be from the combination of the two. Feel free to PM me if you'd like.

Anne 

stahr

I have been diagnosed with ovarian cysts which occured 5 weeks into taking Tamoxifen. I have pelvic and lower back pain. It hurts when I sit down, stand up and walk around. Severe cramps wake me up at night. Does anyone else have cramps?  I am scheduled for a hysterectomy.  Ack!

Anonymous

stahr--I'm so sorry to hear of all the pain you're having.  Will you hysterectomy be abdominally or by laproscopic surgery? (I hope it's by lapro--much quicker and easier recovery overall).  Praying for benign results for you and a speedy recovery.

VBG

Met with my onc and once my ovaries are out I will go on AIs which she says are actually showing better results than tamox and with less SEs and risks.  Since the Tamox was not effective for me and the SEs were significant I look forward to the AIs instead! 

stahr

awb- thank you for the kind words and sympathy.  The surgery will be laproscopic.  After having a masectomy I'm sure this will be much easier.  I too hope for benign results.  I feel strongly that this is related to the Tamoxifen.  Good luck to you as well.

msnurse133

I was already on neurontin for the nerve pain in my breast and then had the oopherectomy and the hot flashes are brutal! Then I started having horrible joint pain and when I looked up the se of neurontin it is the most common for musculoskelatal. It had gotten so bad I had to stop the neurontin (agaisnt my doc advise) and now after ebing off it for about 3 weeks the joint pain has improved. I guess I am just a member of the < 1-3% club. Lucky me right? My doc said she has rx'd neurontin to 100s and no one has had joint pain. I am so disgusted with nothing working for me. Anyway, thanks for letting me have a place to vent.

msnurse133

my onc said no to those. I don't understand why if I have no ovaries. The flashes are so bad I started promensil. It says it is OK with bc hx. Not from a plant estrogen

siona

Hi Stahr

I too have been on tamoxifen for 6 weeks and have since found out have a large ovarian cyst. No period..just lots of lower back pain.May I ask if your doctor said that a hysterectomy is only option? I'm kinda exhausted right now from 3 bouts of surgery and can contemplate a hysterectomy maybe in a few months. Am on zolodex for ovary suppression. Any thoughts?

SIONA

betsy13

Hi Siona,

Boy do I hear ya.....I have been on Tamoxifen for a little over 6 months.....had uterine surgery to remove 4 polyps only a month after starting Tamox....now 6 weeks ago started feeling fullness and lower back discomfort.....US revealed a 4.56cm cyst.....checked again and still there....with no period for 53 days..had been regular up until now.....finally decided with my Gyno to remove the ovary (only have the R as I had the L removed years ago due to cysts) I also considered having a laporoscopic vaginal assisted hysterectomy,so I wouldn't have to worry about another surgery down the line, but the recover is much longer and can't afford to be out of work for 4 weeks vs. 1 week....but sure don't want to have it done later.....What to do....What to do....finally on Friday got my period after 53 days....my Gyno asked if I wanted to wait for a better time to do surgery in case I do need the hysterectomy, but I said "no" because I am afraid that the cyst will not resolve or if it does that I will just get another one....and I can't continue dealing with the R side discomfort and intermittent lower back pain.....I am very active and the cyst is affecting my work and running activities.....which I still need to do for my $ and the running for my mental health.......How large is your cyst??? I was told by my Gyno before I got my period that he would take me off the Tamox (with my onco OK) to see if the cyst would resolve to decrease the discomfort and give me time to do the surgery at a later date, as he felt I would probably continue getting the cysts.....I just want to be DONE......so still trying to decide what to do....

Betsy     

kuchagirl

I've been on Tamoxifen about 11 months. I just had an ultrasound that showed a polyp, and now I'm scheduled for an endometrial biopsy in 2 weeks. I, too, thought that the frequency of uterine difficulties was low. I'm only one year into a five year regimen, and I wonder if it's worth it, if I'm already having a polyp this early on. But I'll probably stay on the Tamox. I do understand the reasoning for staying on it.

siona

Hi Betsy

My ovarian cyst is 8cm... and yip still no period (about 7 weeks late). Our situation seems similar, have you decided what to do about the hysterectomy yet? If the next 5 years is going to be about cysts,..oi. 

LOVE

SIONA

betsy13

Hi siona,

Nope still haven't decided what to do as to just having the ovary removed or all of it.....if I thought I could be back at work within 2 weeks of the hysterectomy I would do it, just to be sure I don't end up with more surgeries down the line.....but 4 weeks is a huge financial strain right now (I just found out I owe the IRS even with paying estimated tax).....so I am still thinking on it....my surgery is scheduled as just the ovary for now and on May 6th...I have a pre-op on May 2 and my Gyno will talk to me then, so I have some time to think, I am still dealing with the discomfort in my right side & the intermittent R lower back pain too.....Oh Well....at least I will have time to save up some $ just in case  

Betsy   

siona

Hi Betsy

I don't even want to open any mail as the doctors bills are screaming at me, and the health insurance here in SOuth Africa only covers a portion. Am really tense, hell I didn't ask for this cancer.. I see my gynae on Friday to check on cysts. Please let me know how your op goes

LOVE

SIONA

wendy1356

I had ovarian cysts grow 2 centimeters after being on tamoxifen for 6 weeks. Don't know if it is related.  I have had no pain from the cysts, and they are not cancerous according to testing.  Shortly after my scan I started a period that has not stopped so I don't know if that will have any impact on the cysts.  Wendy

betsy13

Hi Siona,

I'm sorry about the financial stress of your dr. bills....I was lucky to have insurance through my husband....and still ended up with $4,000.00 over that.....so very very lucky, can't imagine what I would do in your situation...I will pray for you though......my business partner (I'm a jr. partner) told me today that I can come back as soon as my dr. says OK and if there are lifting restrictions...we will work around it....God Bless Her.....so I should now be able to return with in 2 weeks....I've had laparoscopic surgery 3 times before and recovered very quickly...know this will be a bit more if I go for the LVAH, but now I think I will and hope for the best.....rather than be doing this again down the line.....I hope your dr. appt goes well on Friday...please keep us posted....you can always PM me if you want....

Wendy,

I finally got a period 53 days after my last one...it only lasted 7 days and ws pretty normal.....that was the first time I wasn't between 22-27 days.....they believe it was probably the cyst..it was last measured at almost 5cm(and they can be bigger than that...how I can't imagine) ....but I still have the R side discomfort and R lower back pain, so cyst may not of resolved.....doesn't matter since I am having the ovary removed (only have the R one now) in the beginning of May....please also keep us posted on your situation....and any ? feel free to PM me

Betsy  

Anonymous

Betsy--glad to hear the financial issues have been worked out. You don't need that worry on top of everything else! My ovarian cyst actually grew to almost 8 cm...

Anne