Seeking Experiences with Breast Cancer Treatment

I was diagnosed with IDC with vascular invasion. My journey started with a lumpectomy which resulted with incidental findings, that lead me to opt for a bi-lateral mastectomy. I am 3 weeks in recovery and just started Tamoxifen.

IDC two weeks past lumpectomy. Start radiation in two more weeks. 6 months adjuvant endocrine clinical trial of Endoxifen. Tamoxifen’s evil cousin. Not sure what oncologist will want to put me on after being as Endoxifen is not yet FDA approved. It was all the same side effects as tamoxifen.

I was just prescribed exemestane 25mg I’m actually hesitant and nervous about this one . The other ones were not good at all for me

My sister and I are on exemestane. My sister couldn't take letrolzole (I did). She has no problem. I occasionally get nauseous, so I take nausea meds. I get nauseous when I don't eat before taking it.

I had radiation without any medication as follow up. My IDC was negative kind of

Thank you Virginia. Quick question. Have you had any other side effects on exemestane? And how long have you been on it. I really appreciate your input 😃

Good evening, I was also diagnosed with invasive ductile carcinoma. I chose the double mastectomy which they were not able to save the nipples. My tumor in the breast was also cancer, estrogen fed. No Radiation or chemo alot of pain. I am having my second surgery August 7th, expanders to implants. I am also having a hard time finding a pill, they insist on keeping me on the Tamoxifen gave me anti nausea meds. I don't want to be on this.

I totally understand the issues with these meds. It’s extremely frustrating. I only had a lumpectomy and a month of radiation. This is my 3rd try on a different med which is exemestane that I still haven’t taken yet I’m a little worried about it

I believe the reason they won't take me off it, I am on blood thinners, there's a risk of clots with this med. Ever wonder if they endorse drug companies?

You know I’ve been thinking the exact same thing!!!

Peggy, I took emestane for 3 years starting in 2004 post chemo for IDC. I think I had some hot flashes, but they were better than on tamoxafine. I'm taking it now with Kisqali for MBC. My sister is taking it for AI for ductal BC.

Virginia that makes me feel a lot better thank you because I’ve heard horrible things from people on this med. weight gain excessive hair loss horrible mood swings and so on. I’m aware everyone is different but what I heard was kinda all the same side effects that’s the reason I haven’t taken it as of yet

What are side effects from rads? I’m very scared about asthetic outcome, nipple changes. I am very sexual and will be devastated, like I don’t think I will be able to handle it if my body is drastically different after :(

My diagnosis is hr2 low stage estrogen positive . Had surgery and 20 days of radiation then put on arimidex. I am 88 years old and want to stop the pills.is it wise to stop?

Caitlin G, in 2002 I had chemo and radiation at the same time. I had extreme fatigue, burns over the course treatment. They paused the radiation for several weeks for the burns to heal, then resumed the remaining treatments. After the radiation my breast including my nipple shrunk. It doesn't look bad. I had targeted radiation to my subcarnial lymph nodes (between my breasts). In 2016, I was diagnosed with MBC in those nodes and most of my bones. In 2019, the bone mets progressed to my skull. I had radiation to my skull. Again I had fatigue but the Mets no longer lit up. Good. In 2023, a Met lit up in the middle of my back (T6). Radiation, again. Again, fatigue, but burned my esophagus. Put in the hospital because I couldn't swallow (eat or drink). I will do it again, if necessary. Take care of yourself.

God Bless you Virginia M. Your truly a warrior and I totally admire your attitude towards this cancer!! I to if I needed to I’d do it all again. It’s not about aesthetics .. It’s about being alive. Never forget that.. stay strong

Thank you Peggy, I really enjoy my life. I stay positive and joyful.

Virginia I am enjoying every single moment of my life as well and wake up every day smiling with a strong and beautiful attitude..

Hi Peggy. I have been on exemestane for a year and half. I have rare hot flashes and occasional muscle cramps in my calfs. I have tolerated them well. I also am on 25 mg., had a lumpectomy and 30 days of radiation. Every person's experience is different. I wish you the best. God Bless.

Thank you so much Susan B. That also makes me feel better about starting the exemestane . This is exactly what I need to have a little more faith in taking these pills. I realize everyone is different but you were not the only person who had a positive experience. Thank you and God Bless ❤️

Thank you Peggy. Living one day at a time and enjoying life. Wish you the very best!!

Hi, Peggy. I had the same diagnosis but with a bi-lateral mastectomy. I’ve tried letrozole and anazatrozole and will start exemestane on Aug 15th. I’m hoping for the best…again.

Hi JG. Can I ask if it was your choice to have a bi-lateral mastectomy or was it the doctors decision. I’m asking because my doctor said absolutely not to do that it wasn’t at all necessary. And hoping all the best to you I know this is hard

Hi, Peggy. At first, it was certainly my decision. Although my procedure could have been done with a lumpectomy, I opted for the mastectomy. I had a female surgeon who encouraged me to advocate for myself. She was certainly leaning towards a lumpectomy, but I was adamant for the mastectomy. When it was time to do my surgery, as she started the process, my surgeon came out to speak to my partner, and stated that she was glad I made the decision and advocated for the mastectomy because the tumor was larger than what was shown and she would have had to have done a mastectomy anyway. Sometimes I think we listen to our guts and our bodies- I did. Although my stage was a one, my grade was a 3! A 3 means it is fast and growing quickly. I am sending you the most positive energy.