Grueling Tamoxifen Decision with DCIS???

iHEARTu

Grueling Tamoxifen Decision with DCIS???

iHEARTu

It's been almost 3 months since my bilat and I still have not made a decision on Tamoxifen. In my case, both my oncologist and BS actually think it's overkill. The oncologist said in Europe they wouldn't. I've been told re-occurrence is somewhere around 2-3%...is it really worth it?

How did you make your decision by being diagnosed with DCIS?

Beesie

I've heard and read that the risk of recurrence or a new BC after a mastectomy for DCIS is in the range of 1% - 2%.  But even if it's 3%, taking Tamoxifen would reduce this risk to about 1.5%.  So that's the maximum benefit.  Is a reduction of local recurrence risk of 1.5 points worth it for you? 

A few considerations:

- Most local recurrences happen against the muscle near the chest wall or on the scar line.  With the removal of the breast tissue, the muscle in front of the chest wall is right up against the skin.  For those who have reconstruction with an implant, the implant is put behind the muscle, keeping the muscle in front, just behind the skin.  Because of this, local recurrences on the scar line or against the muscle near the chest wall usually are noticeable early on because they aren't hidden by breast tissue.

- Tamoxifen has some serious side effects.  Based on age and personal health history, some women are more prone to these conditions than others.  So depending on where you fall, your risk of serious side effects (stroke, deep vein thrombosis, uterine cancer and a few others) will likely be in the range of 1% to 3%.  Your oncologist should be able to provide more detail on this, specific to your risk level.

- In addition to the serious side effects, Tamoxifen has a number of quality of life side effects.  Some women don't experience these at all, some experience them only mildly, and other women are left miserable.  The studies I've seen suggest that overall, approx. 60% of women who take Tamoxifen experience some quality of life side effects.

That all gets me to my decision.  I had a lot (at least 7cm) of high grade DCIS with comedonecrosis.  My DCIS was multi-focal and multi-centric (in other words, my breast was full of it).  I had a single mastectomy only.  In talking to my oncologist, I expected him to recommend that I take Tamoxifen.  He did not.  He actually recommended against it, saying that he felt that for me, the benefits (in terms of BC and recurrence risk reduction) didn't warrant the risk of serious side effects and quality of life side effects.  I went away and thought about it for a while and researched it heavily.  I ended up agreeing.  For me the benefit of Tamoxifen would have been about a 1% benefit in terms of recurrence reduction and approx. a 4% reduction to my risk of getting a new BC (in my remaining breast).  I decided that this benefit was not enough for me.  I know however that many women, looking at those same numbers, would choose to take Tamoxifen.  So in the end, only you can decide what's right for you.

CAROLMARIE427

Although I am not good on the statistics like Beesie, I just wanted to add that most people that have bilateral for DCIS don't take Tamoxifen.  If it is a unilateral, then sometimes it is suggested to help prevent future breast cancer in the other breast.  But after both are removed, the benefits are so small and usually not warranted.

sbmolee

My Oncologist pulled up a website and entered my specific information then it told us my chance of recurrance was 1-2% and taking tamoxifen it would reduce my chances of a recurrance by 1/2 or 1%.  For me, I decided it was not worth the side effects and risks associated.  My Onc said no physician at our hospital/clinic would recommend it with my stats.  He said if his wife were in my shoes, he would not recommend she take it either.   He did say that if any time in the future I change my mind - I could.  It is now two years out and I am have not changed my mind.  Good luck with your decision.

MariannaLaFrance

I have a higher recurrance rate than you do, as I chose a lumpectomy with RADS, and my DCIS was grade "0". Mine was calculated at around 5%, so taking Tamoxifen would reduce it to 2.5%. I have opted to not take Tamoxifen due to the other types of cancers and side effects. My oncologist has been fairly neutral about it, as has my breast surgeon. By their way of thinking, I could always opt to take it later. I just did a cost/risk analysis and decided it wasn't for me.

Kitchenwitch

I'm not up to the Tamoxifen decision-making stage - haven't even met with any oncologists yet. Just had lumpectomy and am scheduled April 7 for re-excision. However, I doubt I'll be able to take Tamoxifen because of a predisposition to clotting. I'll redo the bloodwork, and maybe it will look better, but if that's my situation, I think the decision's probably been made for me. I have mixed feelings of course: glad I can't take it; and sad that I don't have the option (if I don't). Best wishes with your decision.

iHEARTu

Beesie-

Thank you for your responce!! You always have great answers, sugestions and insite.

I'm the kind of person who likes to hear other's life experiences. I do feel much better reading your post:) Much of what you wrote is what I've been told but it much greater detail. Now that I have expanders...and soon implants (but not soon enogh!) I never gave much thought how the muscle is right up against the skin.

Thanks again for all of your help
catherine

iHEARTu

Oh thanks all of you for your responses!! One less thing to worry about. I think if I felt strongly about taking it, I would have been taking it by now. So I think this will make my decision much easier.

Kitchenwitch-
Good luck to you too! I will be thinking of you on the 7th for your re-excision, I'll pray for a larger margin!!

Take care all!
-catherine

Cherylmarie

THANK YOU, THANK YOU, THANK YOU!!!  I've been searching for anyone who shared my feelings on Tamoxifen.  I have opted not to take it also, and struggled with the decision for months on end.  Every one of my dr's tried to convince me otherwise, but I'm telling you in all honesty, something deep in my gut told me don't do it.  I'm just not willing to take any more risks with my health and unless I'm wrong, the same percentage of recurrence mirrors the same percentage one has of developing uterine cancer, blood clots or strokes. It just isn't worth it to me...maybe I will regret this one day, but for now, I know this is right for me. If taking this drug would reduce my chances by, say, 90%, of course I wouldn't hesitate....I'm just not willing to spend five years of constant worry in the back of my mind for 1.5%.

Thank you, again, for posting this....I had posted a couple times asking if anyone had opted out of taking Tamoxifen and didn't get much response.... this cancer has been a life changing experience for sure, and making these decisions are very stressful.  It's nice to know I'm not alone...

Cherylmarie

Kitchenwitch

Thanks, Catherine, for thinking of me! Glad you're feeling better about all the info flying around out there. For what it's worth, my neighbor had DCIS a few years ago, had a mastectomy on that side and no further treatment (no rad, no Tamox). That sounds like a perfectly reasonable course to me.

AmyD

I basically ditto Beesie's post, as well as the others who opted or neeed the unilateral mastectomy. I, too, needed a few months to actually make my decision about taking tamoxifen and opted not to do it for all the reasons listed in the previous posts.  I consulted with two medical oncologists who both were comfortable with my decision to not take the tamoxifen.  I also felt that with vigilant follow-up of my "uniboob," I would find something early, should it appear.  I am comfortable with my decision, plus I have done a lot of reading and making more lifestyle changes, dietary and otherwise, that makes me feel like I am doing everything I can to keep my body as healthy as possible. 

 DCIS 4.5 cm, grade 3, comedo, Unilateral mastectomy 7/09.  No chemo.  No radiation.  No tamoxifen. 

inspiewriter

Just chiming in here--- I had DCIS and took tamox for 4 years, then quit. I feel so much better now. It's really a personal choice, and I have eliminated many other "toxin" sources in my life.

easyquilts

I had DCIS ini the summer of 2008....Had a lumpectomy and radiation, and no Tamoxifin....Due to the fact that I already take a whole aspirin and Plavix every day....No need to take the risk of causing a blood clot...My BS would not recommend it for me, and I was fine with that.... It might have been nice...as an added precaution...but I haven't really worried about not taking it....

 SAndy

jjnscat52

I had a lumpectomy for a 3cm by 3cm DCIS tumor. Had 6 weeks of radiation. Hated all the diagnostic "positioning" x-rays they did during the radiation. I will NOT take tamoxifen for risk reduction. The dangers of endometrial cancer, blood clots, cataracts, etc. do not make it worth it.