I went to see the oncologist on Tuesday and the day before the question popped into my head about what happens to the protection of recurring breast cancer once I stop taking the Tamoxifen. She said that's as far as the studies have gone. My right breast has now started hurting and it hurt when she was examining me. I have pretty much decided to have this breast removed too and go for a cosmetic reconstruction. I am just very scared to make the decision. I guess I need a push from someone who has the experience behind them. I had DCIS which turned into invasive ductile carcinoma and a modified radical mastectomy. I have been taking Tamoxifen for over a year now but the fear is still in the back of my mind and rears its ugly head quite often. The oncologist went so far as to ask me who my surgeon is. I have a mammo on Monday and will decided after that I think. Does anyone have any suggestions? There is no breast cancer in my family but there is cancer.
The decision for a prophylatic mastectomy is never easy; I'll tell you what my oncologist told me. "The prophylatic mastectomy won't extend your life; but if it will decrease your anxiety it is worth it". It reduces the liklihood of breast cancer, it doesn't eliminate it. You'll still have breast tissue and cancer can still occur. So going through treatment again would suck; but it if you catch it early again you have a high liklihood of complete remission and being "cured".
The big difference is that I had metastatic breast cancer; so cancer spreading to my healthy breast is the least of their worries (plus I'll never be considered cured); their more worried about recurrance in my bones and liver or spread to my lungs or brain. He did say the odds of breast cancer developing in my other breast were approximately the same as that of anyone who never had cancer.
Ductile cancer is less likely to spread to the other breast than lobular cancer; so that is something to consider since you had ductile cancer.
My current surgeon wants to do a prophylatic mastectomy on me due to my age (I'm only 33); but the hospital tumor board said no (they also said no to reconstruction surgery; no unnecessary surgeries to weaken my immune system). So she alternates a mammogram and breast MRI every 6 mos to watch my breast extra close (something you may want to consider). We decided to hold off on reconstruction until a prophylatic mastectomy is deemed more appropriate. As more time passes; the last thing I want to do is go under the knife again. I wasn't able to get reconstruction after my modified radical mastectomy because they need a "flat surface" for radiation on IBC patients.
I'm glad you posted here and hope others will share their experiences. It's important to get the opinion of your doctors who have your complete medical history; but it is also very helpful to hear how others have reacted to getting or not getting prophylatic mastectomies.
You're only one year into 5 years of Tamoxifen; it may be worth your time to wait and see what medical advances are made by then.
On a side note; some women opt for a hysterectomy with estrogen positive breast cancer; there isn't much evidence as to the effectiveness of this it's more of a theory. So discussing your age, health issues, health history with your doctor is very important!
This is a huge decision; don't rush it. Once your breast is gone its gone; so make sure it is truly what you want and it is an informed decision and not one out of fear. When I was first diagnosed I was ready for them to take both breasts; my original oncologist/surgeon said the side effects from the prophylatic mastectomy were worse than the risk of cancer occurance in the other breast. (I started treatment in Texas; once I was in remission I moved to Michigan to be near family).
09/07/2008 03:14 PM
Posts: 898 Member
Thank you for responding. You've given me something to think about that my oncologist hadn't told me.
Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.