Raloxifene and DCIS

EMS568

I was diagnosed last year with DCIS of the right breast. I'm 8 months post lumpectomy with radiation. I was originally on Tamoxifene but quit taking it because my blood pressure became dangerously high for weeks on end. It caused severe joint pain and the night sweats as well. My oncologist took me off the Tamoxifene and I was off the med for a month (and felt great!) and then I started Raloxifene. I've been on it for almost 2 months and I am having severe joint pain, lower back pain, and arm pain, involving my elbows, ironically. I am a paramedic and volunteer firefighter and I feel I am having difficulties performing my job. The pain in my lower extremities has gotten so bad, I feel worthless. I don't sleep well at nights and on average, I get one night of good, full sleep.  In the entire time I've been seen by my oncologist, he has only done labs one time. I have no clue if the DCIS was taken care of by the radiation, and my oncologist stated to me, 'there's no way to be sure, there are no blood tests to determine that'. So in a nut shell, I was diagnosed, had surgery, then radiation. On Raloxifene, and now feeling horrible. I have no clue if the DCIS is gone, and I'd like someone to explain to me how to know if the radiation was effective and how to live my life, with the horrible effects of raloxifene. Any insight would be fantastic!

crestie

Hello

I am sorry to hear that you are suffering with side effects. Taking hormone therapy to prevent recurrence of Dcis needs to be a balance between risks and benefits.

If your side effects are causing you considerable problems then maybe it is time for a rethink. Dcis is never life threatening and if you get a recurrence most of the time the recurrence will be more dcis. Assuming you are having regular mammograms even if you had a recurrence (dcis or idc) it is likely it would be picked up at a very early stage and be treatable.

I was offered tamoxifen but decided not to take it for the reasons described above.My surgeon was keen for me to take it but oncologist felt it was overkill.

No one can tell you if you will be one of the few unlucky people, but I sure wouldn't want to spend the next few years miserable with side effects for a small improvement in recurrence rates for something that is unlikely to threaten your life. This is my personal opinion and others may have a different view.

My advice would be to get a second opinion and review of your personal recurrence rates.

Chloe1313

Hi, EMS568 did you continue to take the Raloxifene? I was also on Tamoxifen and the side effects were horrible. After only being on it a month, I couldn't sleep, had fatigue, bowel issues that got so bad I couldn't leave my house. The weakness and body pain had me to the point that I couldn't get out of bed. I couldn't even function. After 17 years at the same job with never a problem, my boss came to me and said that I was making too many mistakes and I need to find a way to get it together. I went off of it and within a few days I felt great. I saw my doctor and she wanted me to go back on the Tamoxifen and if I had the side effects again she would have me take a leave of absence from work. There was no way I was doing that. The month on the Tamoxifen was the worst month of my life. Now she wants me to go on Raloxifene. I am so afraid of the side effects? How are you doing on it?