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Anyone stop Tamoxifen, then have recurrence?

crselby's picture
crselby
Posts: 380
Joined: Oct 2009

Hi ladies. I started Tamoxifen very reluctantly after lumpectomy and radiation for one spot of DCIS that was grade 3 (aggressive). Oncologist said to try it and stop if I didn't 'like' it. Radiation oncologist said don't bother with it as it would cut recurrence from only 14% to 7% . My new gynecologist took pity on me and prescribed Effexor since I had 2 drenching hot flashes while in her office ( I stuck to the soggy paper cover on the table and shredded it! Embarrassing!). At 75mg it helped but didn't stop them. And there were leg cramps all day long.

But the killer was the endometrial polyps. Will have them removed next week for the second time in less than a year!! So my oncologist agreed with my gynecologist that I should stop the Tamoxifen. "Oh frabjous day, callooh, callay", I chortled in my joy.

In our 'where do I go from here' discussion he indicated that the AIs have their side effects also, of which I feel well informed due to reading these discussion boards. I already have a little arthritis that comes and goes (I live in warm desert) so we both felt AIs were not a good idea.

The trick is, he said, to have mammograms every 6 months of affected breast and 1/year of non-affected breast AND ultrasounds every 6 months in between the mammos because I have dense breasts.

Every one of us has different treatment to suit our needs, the nature of our particular beast, and our personalities. I suppose I could have a hysterectomy but I am willing to keep my organs, then be extra vigilant (costs $$$$) about the imaging instead. Does this sound reasonable to you?

Has anyone regretted stopping the Tamoxifen due to recurrences?

Thanks for sharing. ~~Connie~~

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

Connie, I did more than a full course of tamoxifen (7 rather than 5 years), because no one knew how long to leave me on it in 1987. My cancer was invasive, Stage 3A, not DCIS. My cancer did come back after a 22 year remission and I am now on arimidex which works somewhat similarly to tamoxifen. I will now be on arimidex for life or until it stops working. Cancer can be darned sneaky.

mamolady's picture
mamolady
Posts: 795
Joined: May 2011

Connie, you may want to ask for screening MRI if you have really dense breasts. That is more typically recommended for high risk women with dense breast. Ultrasounds are not really good as a screening tool. My sister is having her MRI once a year then 6 months later a Mammogram once a year. So she is screened every 6 months.

Cindy

(I have been working as a mammo tech for the past 5 years)

mamolady's picture
mamolady
Posts: 795
Joined: May 2011

In order to determine the best screening for you you may want to talk to the Radiologist not the Oncologist or OB-GYN. They typically know the imaging better and what works.

Cindy

New Flower
Posts: 4128
Joined: Aug 2009

I have read about your question here for several times here. I think it goes both ways. I hope you will get more replies soon.

dbhadra's picture
dbhadra
Posts: 344
Joined: Jan 2011

My breasts are also dense and the mammo showed NOTHING although on the MRI there was clearly a fairly LARGE (over 2 cm) tumor sitting there...who knows how long it had been there although I had been having mammos regularly. I now tell other woman, not to scare them, but just to let them know, that mammos do not show all!

Re: tamoxifen: I would be on either that or the other one (Al?) as my cancer is 100 % estrogen positive, so am curious how others have done with it.

Laura

DiscoDiva
Posts: 7
Joined: Jun 2011

Hi Crselby.

I am just curious....Did you get endometriosis from tamoxifen?

I have already suffered from endom. for about 10 years, now BC.

So, I am about 8 months into tamox. Should i be worried?

I still hoped that I would have a chance to have kids. I'm 39.

KathiM's picture
KathiM
Posts: 7948
Joined: Aug 2005

I am hitting my 5 year total for taking Tamoxifen...and my onc and I are discussing what to do....

I have remained NED since lumpectomy and chemo/rads the entire time. But the rub is that I am full-on osteoporotic, with joint pain, and my cholesterol is naturally high. The trouble with the AI's is that they all have a tendency to do the negative on all of these things.

So, it's a big choice for me, and, when my onc ran my numbers (there is a web site that she plugged all of my stuff into), with or without further meds, my survival rate is the same. And, the chance of reoccurance is reduced only by 3/100 with taking further meds. Now, I stress these were MY exact pathology...so it isn't the same for all...but you might ask your onc about this online site to run your numbers...

And no, it is not oncotype....it's something else (I asked...*smile*)

I can say my mom, who had breast cancer as well and then Tamoxifen for 5 years and then nothing never had a reoccurance...

Hugs, Kathi

disneyfan2008
Posts: 5504
Joined: Oct 2010

NOT quite on topic but i was on tamoxifen for just over 2 1/2 yrs with issues..they took me off for month still issues kept me off another month and then total hysterctomy (due to thickening of uterus (too thick to do vaginally) and bleeding after post meno for over 4 yrs. (surgery was almost 3 wks ago) going back to gyno and onocolo. this week..I am sure going back on Tamoxifen asap

Lynn Smith
Posts: 1265
Joined: Mar 2011

I have been on tamoxfin for 1 1/2 years now.I will go the 5 years if everything goes right. Then I think my doctors said something else.I was Stage 0 non invasive DCIS.Tumor 1/2 centimeter.

My friend took tamox for 5 years, then another med for 5 years.She told me she wishes there was something else.She doesn't like not having anything.AND she is like me hates taking meds but wants more tamox etc.She is a 16 year survivor Stage 3 with 3 nodes involved.

Lynn Smith

jendrey's picture
jendrey
Posts: 377
Joined: Sep 2009

I'm with your Radiation oncologist on this one. The chemo already has caused irrepairable and ongoing damage to what was perfectly normal, healthy, tissue. The trade-off just isn't worth it to me; I'll stay with door no. #1!!!

Really, you just have to decide if the trade off in side effects is worth it to you for whatever benefit the drug could provide to you.

Well that, and whether or not your body can actually metabolize tamoxifen; some cannot. Cytochrome P450 (CYP450) and metabolic enzyme CYP2D6, play a major role in tamoxifen metabolism. Oh, and some anti-depressants interfere with tamoxifen as well.

There's lots to consider I'm just sayin'..

Ann2800103's picture
Ann2800103
Posts: 31
Joined: Oct 2010

I was diagnosed with Breast Cancer in 1998. Chemo and Rad. My Dr put me on Tamoxifen. After five years of clean she asked to take me off. I begged to stay on it and she said if that is what I wanted to do. After nine years I thought I was safe. I went off of it and lost a few pounds which was great.
Unfortunately less then a year later...the cancer had returned to the bone hip and femur. It was pretty bad they had replace both. I am wwalking normal now and on stage 4 but feeling good. I am on Femar and Lupron shots every six weeks. Oh how I wish Iwould of
stayed on Tamoxifen. Those few lbs didn't matter.

hugs
Annie

crselby's picture
crselby
Posts: 380
Joined: Oct 2009

DOES TAMOXIFEN CAUSE ENDOMETRIAL CANCER
The literature says it increases, very little, your chance of developing endometrial cancer.
DiscoDiva, I had a 'baseline' uterine (trans vaginal, pelvic, goes by many names) ultrasound before I started the Tamoxifen, against my oncologist's wishes. A year later there was 'thickening'. Turned out to be 2 polyps on the endometrium which I had removed. Less than a year later, there was more thickening. I immediately took myself off Tamoxifen. A month and a half later, when the gyn went in to remove what was there, there was only one small polyp, indicating, in my opinion, that being off Tamoxifen reduced its size! The pathology reports on the endometrial and cervical scrapings and on the polyp itself were all benign.

WHAT HORMONAL THERAPY TO TAKE, IF ANY
My rad onc agreed that I should stop taking Tamoxifen, even though my cancer was highly Estrogen (and progesterone) positive. My hot flashes are bearable now and I am weaning myself off of Effexor as a result. Still get leg cramps like crazy. I'm surprised he did not suggest Raloxifene. We both thought AIs would just CREATE another batch of side effects that would be over-kill for my little DCIS.

I never took the test to see if I have the genes to metabolize Tamoxifen. With all the side effects, we KNEW I was!

Please note that I had only DCIS, not at all invasive, in only one small spot, with clear margins the first time. I would feel differently if I had had any invasive component!!! I feel vulnerable not taking any estrogen lowering drug.

BUT
1- if I lose about 50 pounds I will get rid of a lot of the fat that makes estrogen.
2- I stopped taking hormone replacement therapy (for hot flashes) in 2005.
3- I drink green tea (and like it) regularly.
4- I take Vitamin D. Before breast cancer I took no vitamins of any kind.
5- I eat a lot less suger (to avoid causing inflammation).
6- And the systemic inflammation I had for several years that caused hives and rash when it first flared up (Leukocytoklastic Vasculitis) either went away on its own or the Cholchicine the doc treated me with got rid of the chronic inflammation!

So I feel I am on the way to changing my life in ways that will keep cancer from starting again.

I know it's a crap shoot, however. And the easiest part is to be vigilant, something we all must do, right?
~~Connie~~

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