Tamoxifen and rapid fibroid growth. Help!

calidancer

Curious if anyone had their known fibroid(s) grow while on Tamox. And did you stop and then they shrunk?

I had a grape sized fibroid that grew to a grapefruit during my pregnancy . It blocked my cervix and I required an emergency c section. It shrunk back down and has not caused any symptoms. Fast forward 6 years and I start Tamoxifen for prevention in my remaining breast. My biggest concern was that the fibroid would grow and require more surgery. I tolerated Tamoxifen generally very well-- no hot flashes, improved sex drive, a bit of acne, possibly mood swings and constipation. But unfortunately the fibroid grew to melon size in 8 months. I should have stopped sooner, didn't even consider it might not shrink if I ended the drug. I guess, along with being over being a patient, I figured I could stop and it would return to its previous unsymptomatic size.

Yikes. My obgyn said she wants it out and preferably including my uterus which is incredibly frustrating. She gives no weight to Tamoxifen causing the growth. Even though it grew during pregnancy. She missed the fact that it was blocking the birth canal and thus the emergency csection. Luckily my son is fine even though he wasn't breathing when they pulled him out! My breast surgeon is totally in board with stopping and waiting to see if it shrinks. Presumably so is my MO who told me I could stop if it grew or I had any other side effects which were too bothersome. I will call him tomorrow.

I'm pretty set on not having a hysterectomy if there is any way to avoid it. I'll be getting at least a second opinion. Also considering a Lupron shot to help it shrink. Open as well to any supplements that could be helpful.

Anyone have any experience with this and how did it turn out?

Signed,

Tired Of Losing Sexual Body Parts

ShetlandPony

I believe tamoxifen made my fibroids grow. I believe taking vitamin D3 (to correct low levels) helped shrink them. I think going off tamoxifen and onto permanent chemopause shrank them even more. Just my experience and opinion based on my sense of my body and a bit of research. Like you, I hesitated to have surgery for them.

calidancer

Anyone else out there?

Pi-Xi

calidancer,

I know this is an old thread, but what happened for you? I have experienced rapid growth in a fibroidand have now stopped tamoxifen.

calidancer

Hi pi-xi. I stopped Tamox and left it alone. My OBGYN is not pleased and wants me to have an ultrasound to check its size and a hysterectomy. I probably will do an ultrasound soon. I had a revision for capsular contracture in October and am sick of all of it. The fibroid is almost certainly not growing at the rate it was while I was on Tamoxifen. It probably has shrunk some, I don't notice it except in the morning before going pee. I thought it would shrink back to its previous small size but it's definitely not that small yet. If there was really concern about it being cancerous a biopsy should have been ordered. She didn't do that nor did she do a baseline ultrasound prior to starting Tamox. I'm going to find a new OBGYN. I'd like to have my tubes tied but would prefer not to lose my uterus.

What did your docs say? My OBGYN didn't think it was the Tamox but then again she said it wouldn't grow when I asked her prior to starting. My breast surgeon and Onc both agreed it likely was the Tamox.

Pi-Xi

Thanks so much for your reply, calidancer!

My ultrasound seven months ago showed mild thickening of the endometrial lining a few small fibroids, largest 1.8 cm and a 2.1 cm ovarian cyst. Fast forward to last week and I have a lining that is 1.7 cm thick and a fibroid that is nearly 5 x 5 x 6.3 cm. It's either nothing or a whopping case of cancer. Going for an endometrial biopsy on Friday. I saw my PCP. That wasn't illuminating, but he made the referral to an OBGYN. So, no real discussion about a course of action, or preferably, inaction. I don't want surgery for any reason. I basically missed out on a year on my life after BMX.

My energy had improved by the day after my first missed dose of tamoxifen. Waiting to see what other side effects disappear (and what metastases may fill the void).

Edited to add: I'm sorry about the capsular contracture! You've had a rough go.

calidancer

Ugh. This is all so sucky! So is it the endometrial lining thickness that is worrisome? Rapidly growing fibroids are very rarely cancerous.

http://www.fibroidsecondopinion.com/fibroids-and-c...

I hope the biopsy was not too painful for you and that results are all good. 💕

JJOntario

I had never ever been told I had fibroids until 8 months on tamoxifen. I could actually feel them when I laying down. My uterus was the size of a 6 month pregnancy. I ended up having a hysterectomy but kept one ovary only because I really really don't want to be in menopause yet. All the doctors won't confirm tamoxifen caused the fibroids but I know that it was the cause

Pi-Xi

calidancer,

I had my biopsy on Feb 9th. I'll be waiting for the results for awhile yet. If the biopsy is negative (can't imagine it will be) but I want remove my uterus to prevent future tamoxifen induced nonsense then the rapidly growing fibroid is what will make it impossible for me to have a laparoscopic procedure because it "may" be cancer. I've done the reading and thanks for the link! With my luck...

JJOntario, I agree completely. Totally the tamoxifen. I'm curious as to the leaving of one ovary. A colleague of mine had that done too.

In the meantime, I'm feeling great while taking a tamoxifen holiday except for the heightened fear of recurrence and anxiety of waiting for the results. I have really missed myself

Pi-Xi

Biopsy was benign! Now to figure out the fibroid issue.

ksusan

Hooray!

calidancer

Wonderful news! Yay!

Pi-Xi

Thank you, ladies!!

summergal

Hi,

So glad to find this thread. And congrats Pi-Xi on your benign results! We get used to thinking "it's probably cancer," right? So, it's such a delightful surprise when it's not! I have been on Tamoxifen for four years with no obvious side effects (haven't had my period for 7 months, so am still in that 12-month "wait and see" if I've entered menopause yet). I started with intense lower back pain three weeks ago, which then expanded to include my lower abdomen. Like menstrual cramps always felt, except without the relief when the period finally comes! Called my GYN and had a TV ultrasound yesterday. It has revealed fibroids and a thickened endometrial lining. I am going for a biopsy on Monday. Preparing myself for the possibility that it will come back malignant...and dreading telling my poor husband that yet another thing has gone wrong with this body of mine. I didn't know I could even consider going off Tamoxifen. Feel like my docs don't communicate with each other and are just "winging it" most of the time...

Pi-Xi

Sorry to hear about your uterine troubles and I can completely understand your worry, summergal!

About getting results...I didn't even know how to respond to the benign diagnosis! I do have lots of inflammation (endometritis) and have been put on a two-week course of antibiotics. Yuck. However, cancer vs. infection. Hmm. Not a hard one.

Regarding tamoxifen, I do not recommend ceasing endocrine therapy; however, everyday it is a personal decision to take the pill. I couldn't bear to swallow it thinking that it was fuelling a malignancy and now I've discovered my quality of life is shockingly better. Oops. I am still considering starting back on it. I had been released from the oncologist in January 2017 and it has been difficult for me to get an appointment, but yesterday, I was finally successful and I have an appointment for March 27. (The Canadian medical system is not quick.) I want to discuss options with him in light of the fibroid issues. He understands I am a "quality vs. quantity" patient. He is wonderful, but I was hoping to never see him again except maybe at the book store. I stopped 3 1/2 weeks ago and another month is a long time to be off. Without the fibroid issue, I probably would have started yesterday.

Hoping your results are good!

Carla-Faith

Did you find out if the fibroid growth was benign? I am in the same boat.

Pi-Xi

Carla, I'm going for another ultrasound in May. We tend to do a lot of waiting in Canada. If it has grown a lot more which I think it has, then MRI and a recommendation for hysterectomy.

I'm very sorry that you are in this boat

comingtoterms

Hi everyone,

I'm 9 years out and it has been my experience that Tamoxifen stimulated estrogen production in my uterus, to the extreme of almost hemorrhaging during my periods. I stopped because of that. It's rather disturbing to think that in 2018, docs are still not correlating uterine thickening, fibroids, ovarian cysts, etc., with Tamoxifen use! Now I'm waiting on a D&C to determine why I started bleeding again two years post-menopause, and have a 9.9 mm. endometrial lining. I'm no doc, but I think excess estrogen production is a scary thing. When I mentioned trying an AI last year, my Onc said he'd give me a script if I wanted, but because it's been so many years w out any hormonal therapy, it's just a shot in the dark. So I've been winging it for 9 years.

Pi-Xi

Just wanted to share that my fibroid was stable on the last ultrasound which I had on Tuesday! So, malignancy is not suspected at this point. (I have been back on tamoxifen for three months.) The recommendation from the gynaecologist is to have another ultrasound in a year. I have to admit to having some confusion when she came in and said "I have no bad news for you today!" What a relief!

ARCats

I need some feedback. Feb. 2017 had:

Endometrial Biopsy. Diagnosis: Scanty inactive endometrium. Negative for hyperplasia or malignancy.

Cervical Polyp Biopsy. Diagnosis: Benign Endocervical Polyp.

I was on Tamoxifen for a year and a half and haven't been on it for about a year because of all the SE's. Recently had five days of bleeding whenever I urinated and It has since stopped. I haven't made an appointment to see my Obgyn yet because I'm not sure if this could be something all together different that I need to consult my PCP first. Not sure which way to go with this, and if it's a female issue should I consider D&C because I don't think at this point I would need a hysterectomy.

Thanks,

bigmeadows

This thread has been so helpful! I am a very active and energetic 50 YO and started Tamoxifen post-bilateral mastectomy & DIEP recon on 5/1, so I've only been on it less than 2 months.I had been getting regular periods until I started Tamox. When it was time for my period in May, there was nothing but I felt crampy and like my period so wanted to happen but couldn't. I hadn't expected my period to come to a crashing halt so fast. The same thing happened in June...no period but PMS symptoms. My body feels very confused by this drug!! I then had my annual gyno check and PAP on 5/9. The PAP came back normal but with endometrial cells on it and evidence of thickening. Next step - transvaginal ultrasound. I was not excited about more prodding of the lady parts, but I try to focus on gratitude for the access to great healthcare that I feel fortunate to have (I'm w/Penn Medicine in Philadelphia). Ultrasound showed 2 ovarian cysts which surprised me but they look pretty typical and will be monitored, but the thickening of the endometrial lining is evident. Next step: endometrial biopsy performed by my gyno in her office or a D&C and hysteroscopy with a gynecological surgeon. I have chosen the latter b/c a biopsy feels too random - it may or may not hit the "problem" area, and my top priority is to get a real answer re: what's going on down south. I am meeting the surgeon on Monday and then surgery in mid-July. My Onco is aware and does not seem concerned and said that Tamox can cause thickening of the lining...however, that fast??? I am looking forward to answers in July but in the meantime, the waiting and wondering is not fun. I am trying not to think about it. Lots of deep breaths, exercise, enjoying the warmth of summer and my family! Thank you for the opportunity to chat and learn, friends.

Mon50

I was on tamoxifen for 3yrs for bc preventive. My perio stopped since last may 2017. Two months ago, I have beenfeelings very sick. Feeling urges to poop with lower abdominal cramp. Diarrhea and loose stool for 2months. Colonoscopy show negative. I chk with OB doc, he said my uterus grow within 3month from a size of 4month to 4-1/2 month pregnant. He suggested me to remove my uterus and the tub and kept the 2 ovaries since they still look healthy. I had my hysterectomy done yesterday 7/9. The doc said my uterus look pretty bad. It was way bigger than what he expected. He said the ultrasound I took previously did show the whole side of the uterus, so it was hard for him to see my uterus gotten so big. My doctor said the uterus weight about 2lb after taken out of my body. I am scared this could be cancerous. I will know the result by next monday 7/16. I am off tamoxifen for 2months now.

armpitgirl

Hello! I have appreciated the collective wisdom of everyone for 6 1/2 years. Now I have a quandry to share. I have had 2 slow-growing fibroids for over 25 years. Outside my uterus, causing no trouble except that they sit on my bladder; oh, well! I have been off Tamoxifen for 5 months now and my fibroids are growing like crazy! Making up for lost time, it seems. Also, my fingernails are now growing and not splitting, and I am slickery again. Lots of estrogen back in my system. Bigger worry is a third fibroid I didn't know I have until I recently found the report. It is growing up my side and may cause trouble. Onc. and primary both say no more tamox. I feel that it may inhibit growth. I don't want surgery. Am increasing exercise as able with other issues and have cut way back on my beloved sweets. Am seeking a gyno. who is willing to listen to my concerns and not rush to surgery. Lots to choose from around here! Any suggestions for other ways to slow down growth? Thanks much!