Bottle 'o Tamoxifen

Runor

Please do not freak out. I had uterine cancer in 2014, and yes with lots of unexpected blood. I was age 63. Had full hysterectomy along with all the related parts. Stage 1A, so no radiation. I found the uterine cancer journey was less aggravating than the breast cancer for which I was diagnosed with in 2020 (Stage 1) and now this darned tamoxifen which has too many side effects for me but I keep trying. If you want to message me, feel free to do so. Hugs Carol

Hey Runor- I check this thread from time to time

as i am also on tamoxifin and older -

( stage 1 IDC- 2019- lumpectomy,radiation

tamoxifin)- Your post is shocking- I am so sorry

you are going through this- It reminded me of the

day i told a friend about my cancer- She was

64 at the time and told me of an episode

similar to yours- At no time did her doctor

tell her it “ was cancer until proven otherwise”-

In fact, she told me she was having

an ultrasound the next day and that a fibroid

was suspected- which it was. I dont understand

how your doctor could say this - its very shocking

in addition to the physical trauma you were experiencing- You must have some hope and

know all possibilities / causes- I had alot of bright

blood in my urine 6 months ago and went in to

a panic- My doctor told me the 3 scenarios

that could cause this- ( kidney stone, bladder

stone, cancer)- altho she stressed cancer unlikely.

...so i had an ultrasound and interior scope ( bladder video) done and strangely didnt fit

any cause - the urologist told me it may have

been an unnoticeable stone - passed -its not

unheard of to have this with no vlear cut cause-

In any case, i say all this becsuse as hard as

it may seem - realize that its not assumed

you have cancer and i wish the doctor didnt say

that to you- our minds go to the worst place-

thinking of you- the week ahead will give

you some answers-

Also in your pocket for these tests (um . . . shirt pocket please )

BLESS YOU RUBY SLIPPERS! Because this is what I have said now to the ER doc and today my regular doc, that we are all acting like I am post menopausal when in fact there is no evidence to support that. At the time I started tamox there was no evidence whatsoever that my body was even contemplating menopause. Yes, I have not had my periods since going on tamox. But that does not equate with having gone through menopause. Period suppression might just be one of the weird side effects I had. I outright asked my onc if tamox would stop my periods and he said no. He was dead wrong (he could not know how I might react to the drug). Last summer when I was off for one week, I got a drizzle event about a week later and I muttered  that I better effing NOT get my periods back at the ripe age of 56! I was 53 at diagnosis and my periods showed no sign at all of slowing down. I was not sad to see the end of them and will be traumatized as hell if they come back when I'm 59 and off tamox!  What the hell kind of bullshit would that be?!

I was lucky to get in today for an ultrasound and peeked at the screen which said my lining was 1.7mm.  I went online (Doctor Google!) and have read  that anything UNDER 4mm is considered to be 95% certain to NOT be cancer. But when the doc called with results he said  there is some thickening, because at its thickest it's 2mm thick. Even if he was rounding up from 1.7 to 2 mm, that's still not considered thickening (from what I have determined). He wants me to have a biopsy anyway and is muttering about a hysterectomy. For a uterus that is not thickening, by the standards I have read  so far?  Hmmm. I suppose with my breast cancer history he is wanting to be thorough and I can't fault him for that. But I absolutely think you have a point Ruby, I might NOT be post menopausal. I am the world's oldest not menopausal person. (57) If I get my periods back after 5 years on tamox I will step in front of an oncoming train! Lord!

runor--I had a hysterectomy 2 years into Tamoxifen. My gyn was keeping an eye on my lining via TVUS periodically and when mine got to 1.8mm relatively quickly, I had a hysterectomy. Total. Ovaries, tubes, uterus, cervix. The whole shebang. And yes, I was tossed into surgical menopause. Hot flashes but not too bad since I sleep with a fan anyway. But I gotta say, I feel really really good! No longer get all the bloating even though I didn't ever have periods on Tamoxifen. And when I did the hysterectomy my doctor found that I also had an enlarged uterus and multiple ovarian cysts so really I'm glad I had it done. I'm sure you would rather not have to have a hysterectomy but it sure was a lot easier than a mastectomy!! And it's nice to not have so much of the worry of those cancers (albeit it's not gone 100% according to my doc).

Thanks for that Edj. I had to laugh when the emerg doc asked if this could be the result of rough sex. Sex? (blink, blink, crickets chirping in the silence) Uh,,,no.

I am trying to keep my spirits up but it is a struggle. I feel weak, winded and tired. Not sure if this is a blood loss thing (although test showed I was not anemic) or just emotional exhaustion, which I suffer from because I am a massive baby. Or not eating. First thing I do under stress, stop eating. Hub knew things were bad when I refused coffee in the morning. What? No coffee? CALL THE AMBULANCE! I hope I don't have to have my lady bits yanked out, not looking forward to more surgery. I keep telling myself it might be nothing, it might be nothing. But we're all here because our might be nothing was something. So...tense. Hugs and thanks. 

Edj, I am hugging you right now. 

Salamandra - always good to hear from you! Very encouraging that you were finally able to lose weight on a Keto diet.

Runor and edj3 - please keep us posted and sending hugs. And cute puppy pics because these have been known to be de-stressers.

I went off tamoxifen March 28 because I was pretty sure I'd be having a hysterectomy and felt it was best to be off a drug that predisposed me to blood clots. It has already seemed to very happily predispose me to uterine cancer.

Today, April 22, I am still not taking it. Not quite a month off and this is what I have noticed.

- I do NOT get out of bed at night to pee. Sleep all night, no peeing!

- I do NOT groan and hobble when I get out of a chair! My first steps in the morning are NOT wobbly and staggery. 

- hot flashes have diminished but not disappeared entirely.

This gives me hope !   I do have to go back on tamox at some point. But blood tests have now made it clear that I am past menopause, so I could take a different med, not that many of them have a much rosier outlook than tamox. I might just tough it out another 1.5 years on the tamox cause the devil I know is better than the devil I don't know. I am not anxious to go back to creaky bones and overactive bladder. But I am hopeful that once I'm done I might be something like my old self again!

Gosh runor, you mentioning having to get up to pee in the night was a bit of a light bulb moment for me - I've been pissed off (pun intended) the last few months about always waking up for a pee, never having had that problem before. Thank you tamoxifen

OMG I think you are right! I had gotten accustomed to getting up in the middle of the night to pee. Didn’t occur to me that it could be tamoxifen until I saw your post and am also on a month break (due to my worries with the blood clot issue and vaccines, so my oncologist recommended I stop tamoxifen while getting the COVID vaccine). Just realized I sleep through the night and light bulb went off.

I do plan to go back to tamoxifen due to all the studies associating it with reduced risk of recurrence. Although part of me is reluctant now!

Posting cute puppy pics just cuz (Salamandra thx for the comment!).

lala1, That is good to know! I had a hysterectomy last year and I told my MO I didn't want to change to an AL. If I had I would have had to add a bone building drug to my regime. So far so good! After my hysterectomy I didn't have to get up to void as much. Another positive. Best wishes.

Lala1, I think my thinking about tamox is pretty much same as yours. Better the devil you know....  I am still off tamox, waiting to hear if I am in for more surgery. If I am headed to a hysterectomy then it's probably best to stay off until that is all over with. Mind you I could wait months for surgery and I don't want to be off tamox that long. ALthough it might well be the tamox that caused this (possible) uterine cancer in the first place! So do I go back on tamox to protect myself from breast cancer or stay off to protect myself from fueling uterine cancer? Rock and hard place, me thinks. But my Onc said as yours did, that the benefit of changing to an AI at this point is likely to be more trouble than it's worth. Now I know that once I'm off tamox the creaky bones and seized joints will snap back! I have been very grateful to have my body movement ability come back so swiftly.

Still waiting for the phone call saying if this is cancer or not. My money says I'd be a fool to bet against it being cancer. I wish I was hopeful, but I am not. 

Heard from my regular doc that I do NOT have uterine cancer, (I can hardly wrap my head around this, I was so braced for bad news as all evidence suggested)  but I do have other things going on. One that he mentioned that I knew nothing about is adenomyosis. The feeling is that this was caused entirety by the tamoxifen.   And I even take it at about 60% of the suggested dose and this still happened. If any of you are curious, it might be worthwhile doing a little research into adenomyosis, tamoxifen and postmenopausal. 

This is not for sure, but I think it will come down to if I want to stay on tamox, the uterus has to go. If I want to keep my inner bits, then I have to switch to a different AI. I will have a better idea when I speak to the gyno and oncologist in the next few weeks. I am happy with this news but at this moment, still in shock.

That is fantastic news runor! Obviously you still have to deal with the current symptoms and make some decisions, but no cancer is brilliant