It is all hitting me now . . .
Hello,
I had a routine mammo in Dec and was told I had DCIS and had a lumpectomy on 12/29. Grade II, Necrosis: Present, focal (small foci or single cell necrosis) Margins uninvolved with DCIS. Distance of DCIS from closet margin 0.4 CM. Estrogen postive and Progesterone Positive. I had a SAVI catheter and radiation at the end of January and now is the decision about Tamoxifen. I felt like I was doing fairly well but for some reason I am unable to make any more decisions. It is like my brain is so tired and overwhelmed that it just can't do it. The first MCO I saw just gave me a bunch of study results and print out of drugs and told me I will know what is the right thing to do. That made me really mad so I saw another doctor. He said I have a 1-2 percent change of getting breast cancer in my other breast and tamoxifen would only reduce that percentage by 45% of that 1-2 percent which seems low to me. I am very concerned about the side effects as I am post menopausal and he agreed. He said if his mother who is about 12 years old than me was asking him what to do he would tell her not to take the pill. I was so happy to hear that until my sister said, how will you feel if you got it again. Would you blame yourself for not taking tamoxifen. So, I am depressed again and can't sleep trying to figure out what to do. Can anyone provide any insight?
Comments
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I am taking Fareston instead tamoxifen. I feel grateful to take it every night. It's supposed to have less side effects than tamoxifen. So grateful.
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Beeba, Im so sorry your going through this. Id recommend asking your gp for some mild sleeping pills, getting a few good nights sleep and then relooking at all the issues. Theres no immediate urgency in making this decision and a few days or weeks of getting some sleep and recovering your normal happier self wont affect your prognosis.
You dont say how old you are, but Im assuming you are in your 50's to 60's based on being post menopausal and the doctors mother being 12 years older. At 42 on my diagnosis which was initially DCIS grade 3 I was happy to throw everything including the kitchen sink at my cancer. I was told masectomy and then arimidex at that stage and while I ended up with some IDC and chemo was introduced to the equation I had already happily decided to do everything the BS and oncologist recommended. I wasnt given percentages etc, I was given the recomendations they both felt would best ensure that I wouldnt have a recurrance and with them knowing I was prepared to do anything possible to get the cancer out and to keep it out to the best of all our abilities.
My mother at 72 has told me that if she is diagnosed with any form of cancer she will be declining chemo and for her children not to try and press her otherwise. My mother prefers quality of life over quantity while at my age I prefer to have long term gains plus peace of mind over short term quality of life.
The decision has to be whatever ends up giving you the greatest peace of mind. I really do think some assistance in getting a few goods night sleep will help clear your mind and then you can proceed to make a calm decision based on all facts to hand. I will say that while the side effects of the hormonals can really suck sometimes, at nearly 3 years in I manage my life very well and the side effectshavent been sufficient to stop me working fulltime on my feet since about the 1st month of taking them.
Wishing you the very best in whatever you do decide to do and sending comforting peaceful thoughts your way
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Beeba, I'm curious, if you are post menopausal, what is the reason they suggested tamoxifen and not an aromatase inhibitor? I know how you're feeling about everything...I just had my lumpectomy Jan 20 and finished my SAVI catheter radiation Feb 9, so I'm right where you are. I did start on tamoxifen on March 2, but I'm 47 and pre-menopausal. I also had both DCIS and IDC.
I know the brain is fried feeling and all the decisions.......my 2 weeks while I was waiting on the Oncotype resuts the last 2 weeks of Feb, I made most days "cancer free" and quit thinking about it just for a break. Otherwise waiting on that darn score was about to do me in.
But I'd first ask why not an aromatase inhibitor if you are post menopausal. Then you can go from there once you know the ratiionale.
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Thank you for your replies. You are right. . . about needing sleep.
I am 54 years old and have no history of breast cancer in my family. He told me that the other drugs are not for prevention of breast cancer when you have DCIS. They are only used for invasive cancer. He told me if I had invasive cancer the discussion would be much different. He said that there have only been two studies with the use of tamoxifin and DCIS and the results were as I described. I did not have any oncotype blood work done.
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Oh my gosh, I'm so sorry - I just saw that it was DCIS not IDC. Ack, sorry for all my questios then!!!!
Yes, the Oncotype is currently not approved for DCIS only IDC, however they are starting to test for it for DCIS and it may be an option down the road, but not now (they also have one for prostate cancer in men). I also do not have breast cancer in my family nor cancer of ANY kind on either side. At least 4 geneartions back (benefits of doing genealogy, I have that info). I'm the shining star in my family, ha ha ha....
I apologize, I had DCIS and IDC both, they thought just DCIS at first, and for some reason I glossed right over your DCIS part and assumed you had IDC, doh! In your case, I am 100% with your second doctor. I would not take the tamoxifen. The percentages the first doc told you are correct, even for those of us with IDC. For me being 47, premenoausal, and very highly positive ER and PR (over 90% ER and over 95% PR), the tamoxifen for me makes complete sense and I have a real benefit from it. You don't.
I'm a pharmacist and I have always told patients when I worked with them in the past (I practice in mail order setting now), "think about the side effects risk vs benefits. If the benefits far outweight the risks, you'll be able to handle the side effects better b/c you know in the end this drug will help you. If the risk of taking the drug outweighs the benefits or the side effects are worse than the disease (in some cases), then it's not worth taking."
Quality of life is a factor. Your own sanity is a factor. What I looked at when I was debating lumpectomy vs mastectomy was: what decision will allow me to sleep at night?
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Beeba, I am an analytical type persona and I would think about it this way. If your risk of getting cancer in your other breast is 1-2%, then it is 98%-99% chance you won't get it. And if Tamox reduces this by 45% that is reducing the chances to roughly .5%-1%. So if you take tamox, 99%-99.5% chance it is not stopping a cancer, - i.e. doing nothing but giving you side effects and risks - (either being in the % that wasnt going to get it anyway or the small % that will get it anyway with tamox ) and only .5%-1% that it actually prevents something.
One option might be to try it and see how the side effect are. You can always stop taking it after a day, weeek, month or year if you notice quality of life problems.
Personally, I chose not to take tamox, even though I am pre-menopause. I am making lifestyle and diet changes (no processed foods, more exercise, no plastic container, reduced dairy- only organic, etc) and it is unknown if this will do anything for the estrogen in my system, but this the choice that is right for me....i have always preferred to avoid pills and medicines whenever possible. I will be VERY dilligent about my follow-up and regular self-breast exams, hopefully to find something early if i do have a problem. I have asked myself several times the same thing your sister asked...how would you feel if you got BC again....and obviously i would be devistated, and wonder what would have happened had I taken tamox. If a recurrance was invasive i would look back and admit that I made a mistake. And probably would take tamox despite side effects if i got it again.
If you are the type to stay awake worrying about it if you decilne that too is a side effect of the decision not to take tamox, a side effect that could affect QOL too.
Good luck with your decision.
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Thank you for all of the replies. Do you think the 1-2% change of a new breast cancer in my unaffected breast sounds right?
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Beeba- I agree that 1-2% chance of a new breast cancer in your other breast seems too low - as if since you got it in one breast, your other is "home free"? In our tamoxifen discussion, my oncologist told me, your unaffected breast was exposed to everything your affected breast was exposed to. Not to freak you out, but alot of the literature addresses reoccurance ie, in the affected breast-Which you still have, since like me, you had a lumpectomy, not a mastectomy. In any event, I find the whole risk discussion very difficult to wrap my head around. I am pasting in two citations for you - to read when and if you feel like it - after you have gotten some rest. The first is on risk and dcis and tamoxifen. The second article talks about the longer term impact of tamoxifen. http://dcis.info/understanding_risk.html and http://www.breastcancer.org/treatment/hormonal/new_research/20110728.jsp
and you don't have to decide about tamoxifen right away and if you start, you can quit if you don't like the side-effects/risks.
Hugs to you,
Julie E
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Thank you everyone for your replies. Jelson, the links were very helpful. I am still confused and overwhelmed so I think I am going to allow myself some time before I make the final decision. I also believe I will call the MO again to be sure I have my percentages correct; perhaps next week. I am just so tired and overwhelmed.
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