recurrence

This news breaks my heart. No.

I hope you have someone close by to help you adapt to this news and I hope you will lean on the women here. No one deserves this, least of all you. You have been so helpful and supportive to me. I know you will be ok but I can't imagine what you are going through today. Hoping for comfort for you.

Hi, KBeee, I am also a recurrence club member, which neither you nor I wanted to join! When I had my recurrence, of course they removed the lump and I did radiation. I had not done chemo the first time since I had a low oncotype, but they felt I should do it the second time, so I did TC. And finally, since the tamoxifen did not work, they are putting me in menopause with a monthly shot and I am on anastrazole. It sucks to have to go through this all again, no doubt, but I am feeling good again, so stay strong.

I didn't have implants but I hear they don't mix well with radiation so that might be correct. I think the questions will come naturally once you hear the plan. Don't be afraid to get a second opinion if you are unsure.

I will be on vacation for a while but wishing you luck for the best possible news.

K, just saw this and wanted to send my support and warm wishes for best possible results Wednesday. Take care.

I was diagnosed with high grade DCIS in 2011. Had a right side mastectomy with temporary expanders. It took three tries to go ahead with the surgery to remove the expander and put in the implants (one of left was for symmetry). The oncologist "offered" me Tamoxifen but they didn't try to push it so I didn't take it. I read numerous articles regarding the controversy over what to do about certain types of DCIS/some may never turn into IBC but no surgeon wants it to be one of their patients. Maybe I should have sucked it up....About three weeks ago I found what felt like a large marble in the area around the mastectomy incision site. I thought it must have came from the implant because I have no breast, just skin and nipple from the sparing surgery. I've massaged this area every day as recommended so it did alarm me that it could surface so quickly. Saw the PS first. He said it wasn't the implant but it needed to come out and be biopsied. Scheduled for 2/23/15. I had another little hard thing come out on that same breast so I contacted my BS. She said the one that "worried" her was the larger one along the incision site. When I asked if she'd seen this before she nodded and said she didn't think we should wait until the 23rd to get an idea of what we're dealing with. She took a small sample in her office. She called on 2/12 to let me know it was cancer and she would coordinate with my PS to work out a plan for the 23rd. On the 23rd, yesterday I guess, I had a Sentinel Lymph Node biopsy, tumor extraction and then the PS put me back together again! He had to put in a new implant which I'm not sure why..maybe the tumor crowded it and damaged it?

I'm waiting now for the biopsy results. She said she hoped to get the before our postop on Monday. So, once again I'm constantly checking my phone and wishing it would ring so we can get this party started! I want a plan and to get started. It's not a convenient time at work and nobody to do my work but I'm just taking it a day at a time. I took two days off from work so I'm hoping for word before Thurs.

I really just wanted to connect with someone going through similar experiences and I found my situation relating to all of yours. I have a few friends who've experienced BC but nobody having a reoccurrence after mastectomy!  Did anyone else not have bilateral mastectomy? I probably should have done both. The first surgeon highly recommended it but the one I chose didn't think it was essential. I do have Atypical lobular hyperplasia on the good side. It's been almost four years and I have been diligent in monitoring that left side but since the other side was "only DCIS" I didn't think it could happen. Now I know I'm one of the top 1-2% but not the wealthy kind, ha!

Best wished to all of you struggling like me   Diane

Thanks for responding so quickly KBee! So glad to have a sister in that 1%.  Did I read your post correctly, you are having surgery tomorrow? Sounds like you've through a lot as well and I wish you the best if it is tomorrow.

I don't have a plan together since the appointment with my BS was a squeeze in at 5pm then didn't get results until the following Thursday. All of the coordination between the BS and PS was done by phone and didn't even see them until they stopped by prior to surgery yesterday. When I asked what her gut feeling told her, I knew how ridiculous that sounded! Of course she said we would need to wait until the pathology came back  Why would I even want a doctor who based their treatment plan on "gut feelings" anyway?!  I'm blaming this one on surgery brain, ha! I will see the BS and PS on 3/2 then the Oncologist 3/9 unless she feels it needs to be moved up based on pathology report.

Thanks again for responding. It's a little lonely on this end since I know no one having BC after a mastectomy.

KBeee I will be waiting to see how things go for you today. Even though I don't really know you, I have a gut feeling we could be friends!
I hope you have a good support system. I'm still awaiting what feels like my sentencing/pathology report. I can deal with anything but I have to know what I'm fighting against. You seem like most of us. We just need to know what the plan is. You also seem remarkably brave to come from that Feb 2 post to where you are now. You were "devastated" and then you started advocating for yourself (BTW I loved that you "cut out the middle man") and now you have a plan. I think you are very brave and you will be in my thoughts today. Keep us posted when you're up to it.

Don't knock gut feelings. I think it is important to remember that medicine is as much an art as it is a science!

I'm sorry you find yourselves in this scary situation. There but for the grace of G*d go any of us!!

Good luck with your treatments. Be well.

Love and support for the smart and strong ladies being so horribly challenged