Mast on Left side, do I need to take Tamoxifen now?

FarWestSuburbsChicagoMom

I was dx in July 2009 with DCIS.   Unfortunately the area of DCIS was large and my only option was mastectomy.   Had mastectomy with reconstrutction at the end of August 2009.   My oncologist is now recommending Tamoxifen for 5 years.  I've seen mixed recommendations.  Is anyone else taking Tamoxifen after mastectomy on one side.  Did anyone decide not to take it?   I think I could go either way....I'm 42 years old and i'm having a hard time with this decision.

Beesie

You don't need to take Tamoxifen, but it's an option.  I had a single mastectomy for DCIS w/ a microinvasion, and I decided to not take Tamoxifen.  My oncologist actually recommended against it, which surprised me, so I did a ton of research before I made my decision (my oncologist would have prescribed it if I'd said that I wanted it).

My reasons:

For me, the benefit wouldn't be huge (from my perspective).  My risk to get another breast cancer was estimated to be about 22% - that's about double the risk of the average 49 year old, my age at the time of my diagnosis.  That works out to a risk level of just about 0.55% per year (to age 90).  If I took Tamoxifen for 5 full years, studies show that the benefit would be approx. a 45% reduction in risk for those 5 years and based on the latest studies, for at least another 5 years.  After that, it appears that the benefit starts to reduce.  I'm PR negative, and studies have also shown the that benefit from Tamoxifen for those who are PR- is lower than it is for those who are ER+/PR+.  So that likely would reduce my benefit even more. My oncologist estimated that Tamoxifen would reduce my risk from 22% to 17% or 18%.  For some women that would be a significant enough benefit to warrant trying Tamoxifen, but for me it wasn't. 

A big factor for me is that I'm better dealing with the devil I know vs. the devil I don't know.  I've had breast problems since I was a teenager (I had my first biopsy at 16) so finding out that I have a 22% risk to get BC again was actually good news for me - it's a lower risk than I expected.  I am used to dealing with my breast problems and I am okay living with a 22% risk (and note as well that the risk goes down for every year that you don't get BC; I'm 4 years out and my risk now is around 20%).  Then I looked at the side effects from Tamoxifen.  The risk of serious side effects is about 2% - 3% - that's not high compared to my 22% BC risk but I know that I would be constantly worried about these new risks that I was exposing myself to - the risk of stroke, uterine cancer, etc.. Additional to that is the fact that about 60% of women who take Tamoxifen experience quality of life side effects. For many it is completely manageable but given how I feel about my BC risk (I can live with it), given that I was already not happy that I needed to have a mastectomy, I figured that I'd given enough to BC and I didn't see the point in subjecting myself to the risk of hot flashes and various other possible problems.

The way I looked at it, if I have a 22% chance of getting BC again, it means that I have a 78% chance of not getting BC again.  So there's a 78% chance that I would be taking Tamoxifen when it really wasn't necessary.  On the other hand, if I am going land on the down side of the odds, without Tamoxifen there's a 22% change that I'll get BC again; with Tamoxifen there is still a 17% chance that I'll get BC again. I figure if I'm unlucky enough to land on the short end of the odds, I probably would still land there, even if I took Tamoxifen.  And I know that I would not be a happy camper if I took Tamoxifen, worried myself silly about the side effects, and then ended up with BC again anyway.  And if I don't take Tamoxifen and I get BC, my argument to myself will be that it would have happened anyway, even if I'd taken Tamoxifen.  So I'm comfortable with my decision and I can live with it easily.

So that's why I decided not to take Tamoxifen.  But many women who have a single mastectomy for DCIS do choose to take it - or at least try it, to see if they have side effects or not.  My decision isn't the right decision for many women.  So just keep in mind that there's no wrong decision; you just have to figure out which decision you can live with the best.

AmyD

Hi ChicagoMom,

I, too, was dx with DCIS and large enough that a mastectomy was the option for me as well.  I talked with my oncologist re: the tamoxifen.  I decided not to take it and my oncologist supported that choice.  I had asked him to please tell me if he felt I was making a huge mistake by not taking it.  I will have regular follow-up of the remaining breast and I wasn't really convinced that the potential protection tamoxifen offered was worth the risks of taking it, plus the side effects.  I'm hoping vigilance of the other boob will be enough.   Although I have a higher risk of cancer in the breast since I have had cancer, I also have a pretty good chance of NOT having it.  Weighing all those things, I made my choice not to take it.  There are times I wonder if I should get a second opinion, but in general, I really feel comfortable with my decision.  I'm 48 years old (and I live "relatively" near Chicago!!) 

roseg

With a mastectomy tamoxifen is less critical than with a lumpectomy where you have more risk of the DCIS returning.

Tamoxifen is an option after mastectomy for DCIS and a good Oncologist will recommend it as well as laying out your risks pretty much what Bessie explains.

Since you are only 42 I'm assuming you are premenopausal. That gives you quite a few more years for high levels of estorgen to be floating around influencing your remaining breast tissue. Tamoxifen will reduce your risk of DCIS on the other side. It's not an expensive drug and many people tolerate it very well although it will cause you to have irregular periods and sometimes other uterine issues. 

My take is that if you are undecided why not try it? Even if you don't go the whole 5 years you'll be buying some extra protection. You could well be one of those women that it doesn't bother at all. 

If you hate it you can quit taking it. It is a way to feel like you're doing something to protect yourself. It's certainly better than being frantic with worry about more DCIS. 

Anonymous

Just to let you hear from someone who has taken tamoxifen and has done well. Your physician is prescribing tamoxifen to protect your other breast; tamox has been studied for nearly 30 years and it has been shown to decrease risk by up to 50%.  I was diagnosed with LCIS 6 years ago and I am also high risk from family history (mom had ILC). I took tamoxifen for 5 years and had minimal SEs, mainly hot flashes. (now that I am postmenopausal. I take evista for further preventative measures). It is a very personal decision, one which  we each have to make for ourselves.

Anne

debintn749

I too had extensive amount of dcis- had right side mx and I am going tomorrow for recheck to the dorctor, and he had suggested at this visit about the tamoxifen. I due to insurance difficulties, have not had my reconstruction yet and the insurance will only cover me if i undergo a regimen of treatment, when treatment stops, insurance stops, so im between a rock and a hard place. But I do not want to take the tamoxifen due to Im a worry wart and it will make me work about other cancer when I am currently CANCER FREE due to my mx. Isnt that why we did it? Anyway Im thinking that since we removed the bad breast and we have a relatively low chance of something on the other side, and they will be watching for it, why risk other problems???

Mouser

Hi --

My sister had widespread DCIS 19 yrs ago, mastectomy and immediateTRAMM recon. As far as i know, no one has ever even *suggested* Tamoxifen to her, even tho she still gets US and mammo every 6 months in the other breast (i get no US and only a yearly mammo -- different part of the country?...).

With DCIS you're not at risk of distant tumors -- your only risk is a new cancer in the other breast. Ask your onc to work out the risk of that for you specifically -- then decide what you can live with.

Anyway, when i got IDC, i refused tamoxifen but accepted an AI. No tamoxifen, because i worry about stroke -- most side effects are reversible, that one isn't.  At my age (64 then), the stroke risk almost equalled the benefits of tamoxifen. At your age, stroke risk is much lower. I also have clotting issues in the family -- my aunt got 2 in her lungs on tamoxifen; my mother had phlebitis.  On the other hand, i have good bone density, and i can monitor that (so far so good) , and obviously i'm from a hi-risk family, so an AI was worth trying...

I guess what i'm trying to say is: you really need to think about your own individual risks. and what keeps *you* awake nights ... There are no absolutes in this game -- it's all probabilities, and the best you can do is make a decision you can live with.

FarWestSuburbsChicagoMom

Thanks everyone for your thoughts and inputs.   The tamoxifen debate has been driving me crazy!?  Just hearing from all of you has given me the courage and support to know that whatever decision I go with is a good decision because it will be my decision....one that I will need to live with.   Thank You!!  

Keryl

You got it. ....I had mast. on left; chemo, rads etc.  I have been taking tamoxifen since April.  I have had little to no side effects ; only hot flashes. I am the type that seems to weather treatments well and has few complications ; so I am lucky ; but I also believe in using our full arsenal of weapons against this thing. I see a very educated and progressive Onco; I believe he knows so much as he has dedicated his professional life to this and his wife also had BC;  While I dont follow blindly, I do think that there is a ton of evidence that supports this treatment - as for the personal complications - that needs to be weighed in.  You have to make your call based on those factors - you are asking the right questions. Take care. 

Robby

I decided to forgo tamoxifin after my MX last January -- for reasons as noted about. I just don't like medications especially long term, if they can be reasonably avoided.  Surgery is bad enough! The professionals left it up to me but I opted for upped surveillance of my other breast -- checks every 6 months, alternating mammography with MRI.  I've had one MRI, mammogram tomorrow. After I reached my decision my oncologist said "you did the right thing" but he wouldn't tell me what to do before hand and likely would have said the same thing should I have chosen tamoxifin. 

2xDCIS

I had a mast on the left side after my 2nd DCIS. The oncologist gave me the option of taking or not taking tamoxifen. I opted to take it. I'm still at higher risk of getting another breast cancer contralaterally than the aveage woman and I figure since I got it twice, maybe I'm even more prone. I seem to be tolerating it fairly well for the most part. I still get screened every 6 months (alternating MRIs and mammos) I'm 44 now and probably have a ways until menopause. 

Jilda

momofone

I was on tamoxifen for about 2 years, developed ovarian cysts and took a 6 month "holiday" to see whether the drug was the cause.  I am quite sure it was, as the cysts disappeared.  Docs are recommending that I go back on it - which I was leery about doing, but decided to give it one more try.  I am BRCA1/2 negative but have LCIS and atypical hyperplasia in the left breast. (right mastectomy 9/07)  Actually gained more weight going off the tamoxifen and my entire body has changed shape.  Got my periods again.  Could also be that crazy thing of turning 50...!  I do wonder whether 6 month screening rotating MRI and mammo is enuf and that I would again catch something early.  My anxiety is around a recurrence of an invasive form.  

I recently went to a conf. on DCIS and there was a lot of talk about overtreatment and the general anxiety over this noninvasive form...it's so tough to know what course to take.  

Amcadams48

 Just wondering what you think??

I have not yet been to the oncologist - I'm going on 11/16. I had bilateral Mastectomy even though I only had DCIS in my left breast.  My node biospy was negative as were my margins.  My breast surgeon said the cancer was gone and I would not need anything else except follow ups.  I am going to see the oncologist to hear what he thinks.  Do you think he will reccomend I go on tamoxofin? 

Can the breast cancer come back even though both breasts were removed?

PhyllisCC

Hi,

I had rt mast for extensive DCIS.  I was 56 at the time.  Met with my oncologist to discuss the risk factors.  I don't have all the info that Beesie provided, but my oncologist basically said at my age (post menopausal) the risk for major side affects was higher than getting BC in my "good" breast.  So I opted not to take Tamox.  A comment though... my last mammo on the good side showed calcifications which can mean. either "normal" old age stuff or a new DCIS.  I go back in December to evaluate them.  So, no guarantee, but I am comfortable with my decision. I was willing to go with the stats. My Best.

Allie---my most stressful appointment was with my onco.  In fact I had to request it as my breast surgeon didn't really see any need.  But I just wanted a specialist to review everything.  I was very glad I did.  He did not recommend tamox, but each of us is different.  My thoughts are to get as much info so you can make a real informed decision.

Phyllis

Amcadams48

Hi Phyllis:

I too had to make this appt on my own as my breast surgeon said the same thing to me.  I am seeing someone who is reccomended here in Tucson by many people so I feel cnfident and it will be good to hear what he has to say.

THANKS

PhyllisCC

Allie,

Get the info... you are younger than me so it may be different.  Just don't be rushed into making a decision.  Wishing you the best.  Phyllis (let us know how your appointment goes)

Amcadams48

Had my oncology visit and I'm good for now.  No need for any further treatment.  I've done all I can bby having my bi lateral mastectomy.   Tamoxifen would have more risk than benefit to me.  I vist my oncologist again in 6 months - 1 year for a follow-up.  I'm back to work and feel good.  My chest is less and less tight each day.  2010 will bring nipples and tattooing and while I'm at it I think I'll get my eyeliner done as well and who knows maybe even lips.

Happy Thanksgiving - I do feel so thankful with everything that has occured since August 08.