DCIS

bronxgirl53

Hi, I had a total hysterectomy several years ago. I was diagnosed in March with DCIS. I decided to have a bilateral mastectomy with reconstruction. I was very lucky and had positive results. After I met with the BS she said my ER/PR results were not in and it woud not matter in the end. I would not have to return for six months and did not recommend any treatment. My final results came back ER88%/PR21%. I have been very uncomfortable with letting it go and asked a friend to send my results to an oncologist. He thinks I should be on tamoxifen or exemestance. I called for a referral to see an oncologist, when speaking to the scheduler she was dismissive. I am going to follow-up and take some control of this situation. Any thoughts?

• Lobular Carcinoma In Situ (LCIS)/Ductal Carcinoma In Situ (DCIS) - March 7, 2017
• Left, <1cm, Stage 0, Grade 2, 0/5 nodes, ER+/PR+, HER2-

Annette47

Tamoxifen (or an AI) is given for two main reasons. In the event the person was diagnosed with invasive cancer, it can help prevent distant metastases. In your case, it seems as if that is not an issue for you as you don’t mention any invasive cancer being found, in which case distant metastases would be impossible.

The other reason is to prevent a local recurrence. With a bilateral mastectomy, your odds of a recurrence are, while not zero, very, very, low. I believe 1-2% is typical. Compare that to about 12% for the “average” woman who has never been diagnosed or treated. Tamoxifen can lower your risk by about 40%, but considering your risks are so incredibly low to begin with, the risks of any side effects may outweigh the benefits, which is why it is not being recommended in your case.

Could you push the issue for peace of mind, probably ... at the very least someone should sit down with you and go over the numbers (the ones I gave are rather “generic”) for your particular case and talk you through the thought process.

MTwoman

While I agree with Annette on risks etc, Tamox or an AI (depending on your age and menopausal status) is typically offered for hormone receptor positive DCIS. I was hormone receptor negative, but my MO offered to prescribe it for me if I wanted, solely for peace of mind. I declined, as I didn't want SE with no indication of benefit. I've been 14 years NED with no treatment after mx and recon, if that helps at all Please do follow up with an MO who can go over the risks/ benefits and then prescribe for you, if that is your choice. Good luck!

candles1

I had a BMX for DCIS (ER+PR+) and am not taking tamoxifen, nor was it offered. I also had a total hysterectomy years ago and had been taking HRT. I stopped the HRT when diagnosed with DCIS, of course.

My MO described my risk of recurrence as nearly zero, particularly since I no longer have ovaries producing estrogen. While tamoxifen would reduce that risk further by inhibiting even the tiny bits of estrogen my body could make in other ways, it carries substantial risks and side effects that you should consider. You might reduce your recurrence risk by a half a percent but increase your risk of other conditions by a great deal more than that.

MTwoman

Wanting to see an MO and discuss personal risk and available risk reduction options is quite reasonable. You were given specific information by your MO consultation that helped you feel good about your risk and so did I. She should be able to have the same discussion and hear it with her own ears if she's concerned. Based on my own personal experience, if you want to go to an MO at any point in the future, unless you already have one, they will decline a consultation. (I had an initial consult, moved away. when I returned to the area and wanted to just follow up I found out mine was no longer in practice. I tried to make an appointment to discuss some things with a new one, I was declined an appointment as I am not currently nor have I recently been diagnosed/treated.)

bronxgirl53

I appreciate the insight. I felt like once I received my diagnosis I lost control of the situation. It seems I became "that person" the one that keeps everything inside and tries to make everyone feel better (family, friends, work colleagues and even the medical professionals! It becomes a silent journey. I am a strong, bold woman but I had no words. I have a family member who is a nurse so I sat back and let my diagnosis and recovery take place without being fully awake. I started to get stressed out and wanted to make sure I did everything I needed to do without any regrets just recently. You are right I need to hear the words outloud and understand my treatment plan. I am currently in the process of reconstruction and thats another story. I also feel pretty guilty most of the time for not needing chemo or radiation. So many emotions it makes me feel unsettled. I am trying to be positive and thankful for my outcome.

• 4/21/2017 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement

Allabtbirds

Hi. I think it sounds like a good idea to initiate the conversation with a dr. I feel like I've had to do quite a bit of educating and advocating for myself during this process as I'm sure others have experienced. I had a bilateral mx in May but have a positive margin. I'm ER+/PR+ both 100%. I've heard from two oncologists who both recommend taking Tamoxifen for 5 yrs given several reasons- size and architecture pattern of DCIS, hormone status and positive margin. I'm 41 and peri-menopausal. I'm not looking forward to taking Tamoxifen and the possible side effects but I also want to do what I can to prevent recurrence. Funny, the side effect I'm most concerned about is hair thinning/loss. Has anyone had experience with hair thinning/loss while on Tamoxifen? Anything that helped? I've read some people have used Biotin and even mustard seed oil.