Lumpectomy Lounge....let's talk!

I have been trying to keep up with all of the posts on this thread. it is one of my favorites that I try to make sure I read every day.

Nancy, so sorry to hear about your positive nodes.

Jan, congratulations on finishing rads.

I am now 8 weeks post-surgery and just had my radiation mapping today, so I will be starting next week. i had hoped to start several weeks ago, but my insurance denied the doctor's request to use IMRT (intensity-modulated radiation therapy) so now I will be getting 3D conformal radiation therapy. The nurse today said that there really isn't much difference between the 2 but the side effects could be greater with the 3D. What type of radiation therapy did you ladies have?

Oncotype DX test for invasive IDC and Oncotype test for DCIS are two different beasts.

The Oncotype for IDC looks at 21 genes and predicts the risk of a distant recurrence at 10 years with 5 yr of tamoxifen alone & with tamoxifen + chemo. In this test, an algorithm is used that takes all 21 genes into account to calculate the risk score. Chemo becomes an issue because the possibility exists that a cell may have escaped the breast even with negative nodes to cause a recurrence at a distant site.

The Oncotype for DCIS looks at the 21 genes but only includes 12 of the gene results in the algorithm to determine the risk score. It is important to note that the DCIS risk score predicts the risk of a local ipsilateral event at 10 years and an invasive local ipsilateral event at 10 years.

Since the DCIS being tested has not broken out of the duct and has not spread to the nodes, predicting risk for a distant recurrence is a moot point.

If you have a DCIS and a recommendation comes down for chemo based on an oncotype test, you need to make sure the right test was done and ask a lot of questions with respect to how useful chemo will be since no cancer cells have spread outside of the duct.

Everyone is different and everyone needs to make a decision based on their specific cancer and their own personal comfort level. That being said, I just want to make sure everyone understands the differences between the two tests when they are making their decisions and are in a position to ask their MO's specific questions.

I apologize if I sound preachy or offended anyone. That was not my intention.

Note: When I was at the Oncotype DX site, I signed in as a health professional to see the actual data. If more info is needed to navigate to the inks I posted, let me know.

froggie, I had breast-only rads. I've got two more boosts to go and my skin is holding up very well. It is a little red under my arm and under my breast, but it does not hurt. The reason you might get red under the arm is because of the angle of the beam. They radiated my breast in two positions, called tangents. I am using Miaderm lotion as recommended by my RO. It is great stuff. Not greasy at all. It comes in regular and with lidocaine. I have only used the regular. I called my PT about my shoulder. He is retired now, but will still give me advice because we are hiking friends. He gave me some simple pendulum exercises to do which are helping, but I think they will really help once I'm done with the last 2 sessions.

Jan, congrats on finishing rads and here's hoping for quick recovery!!

DisneyGirl, I don't know what they call my standard type of radiation therapy. I think it is just called 25 whole-breast treatments plus five electron beam boosts to the tumor bed. Welcome!

Peggy, there is no bell at my place either. Boo.

Sloan, my RO said that many patients get second opinions at the Univ of San Francisco center.

njnancy, I'm sorry to hear that you had positive nodes. I don't remember - are you getting an oncotype score? With PR- cancer I would not be surprised if your cancer team recommended chemo just on that basis. PR- cancers tend to be a little more aggressive. But still very treatable. I had the same feeling as you when I first considered having chemo. All I could think of was no, no, no!! But now that six or seven weeks have passed I have come to terms with it and I'm ready to start chemo soon. It won't last forever is how I'm seeing it.

Peachy, I chuckled when I read that you had to drive 50+ miles to a better center, because I drive 50+ miles to get to my "local" center! I'm used to it because I've worked in that town for 28 years.

Welcome to Amhess, April and anyone new I missed. I don't have enough time tonight to respond properly because I after rads tomorrow I'll be camping at the Carrizo Plains, and I'm getting ready! I think there will still be some spectacular displays of wildflowers out there.

Thanks, Moondust. Did your breast swell a lot? I found a cotton bra on line but it is pricey. I hate to lay out that amount if the boobs are going to swell and I can't fit into it after a session or two. Last time I saw the RO, she was going with the short protocol of 15 reg rads and 4 boosts. Since I'm doing both sides that will be 38 total. Based on my pathology, everyone was expecting my Oncotype scores to be low. Now that they are both in the intermediate range, I don't know if she will stick with the short protocol or switch to the traditional one. Guess I will find out tomorrow.

Froggie, lots of unknowns for you Where are you located? That doesn't show for you. Hopefully whatever protocol is used, you'll sail through with no problems.

HUGS!

Dear Amhess:  Yay for benign.  The seroma (?) will go away.  Other people will address seromas.  I did not have one so I can't comment. 

Dear Nancy:  I am so sorry for the positive nodes.  I will say a prayer for you.

Congrats on finishing your rads Jan! Welcome Nancy. Sorry to hear about your positive nodes but as you can see you will have lots of support from this group. Night all!

Froggie- It's my understanding that instead of swelling with rads, boobs actually shrink. I had a lumpectomy on my right side and the BS had to remove so much tissue that my PS suggested a reduction of both breasts after clear margins were found. She made the right (BC) side bigger so that when I have rads and it shrinks the left side will match better. I guess that's pretty standard. Just my experience. Good luck tomorrow with the RO.

614- Thanks for the early bday wishes! I'm sorry about the back handed compliment. At least she didn't ask if you were pregnant. tee hee. I know it sounds vain but I really, really, don't want to gain. I was just getting back in shape after foot surgery. Then, BC.

I'm getting one more (!) stitch out then meeting with my MO tomorrow. I'm getting oncotype dx score. Chemo or no? We'll see.

All of you . You have no idea how much you inspire me. I was pregnant with my first son when my mom was diagnosed with BC. She wouldn't talk to people or tellanyone about it. I think because she was embarrassed. I helped her to be proud of who she was no matter if her boobs were real or not! No matter the weight she gained from medicines and depression. Just last month she celebrated 5 years cancer free! And she is almost at her goal weight. And her lifelong dream of not always having to wear a bra came true. 😉. I can't say it was easy for either of us. But that time in her life made us best friends.

Although mine came back benign and we now live 18 hours apart from each other she was my every phone call. Still my best friend!

You ladies come here and talk to each other. People you may never meet or see and you share your deepest thoughts and your wisdom with each other. I know that just my short experience, I will strive to be better after meeting and chatting with you all. If the world were as easy as this .... Age, race, sexuality... None of it matters here. You are all 1 holding each other up. I wish my Mom had known about y'all. She would have been so filled with life.

Anyways I'm sorry I know that didn't have much to do with my lumpectomy I just had to share.

My results came back completely benign! YAY. However she did not get a clear 2cm margin that is required with a Phyllodes tumor. So by next Thursday I guess I have to decide if I want to wait it out and see if it grows back or if I want another surgery. I know these are rare tumors but what would you do?

BTW my follow up with Dr. B was awesome. We had a picture of the tumor and she went over the shape, size, color and all aspects of the surgery. Amazing! I am a very curious individual and told her I wanted details.

The sloshing is normal she said and has no way to cover the sound of the ocean waves in my chest. But she did say it should help me to not have a dent and as long as there is no infection I am doing great and good to go back to work. (Who wants to go back to work on a Friday). Goodnight ladies!!!! Much love to you all

amhess, I agree with Molly. Even though it is a total pain in the ass, I would get the clean margins now instead of waiting for it to grow. I think it is very typical of that kind of tumor to grow, and you'd end up having an even bigger chunk needing to be removed. It's great that your mom is 5 years out with no recurrence! I think this is the most fabulous community I've ever been involved with, online or otherwise!

Froggie, I missed your earlier question. I don't think my breast swelled. It's fairly large so it might be hard to tell, but it has never felt swollen and it looks about the same as before rads.

614, I do not understand how the comment from your co-worker could be meant as a compliment. I thought the same things as iammags - at least she didn't ask you if you were pregnant Congrats on the 15K steps! I need to get a few more tonight to reach my goal.

iammags, I'm hoping you will get a low score tomorrow!!!

NJNancy, you're entitled to cry, rant, and be pissed off at life because chemo is now on the table. We're here to listen and comfort you. Don't forget to check the excellent articles on breastcancer.org on most anything you want to know. Here is one on Tumor Stages. I think we tend to forget how much more there is here than our wonderful boards. And the search box actually works like it should (unlike some websites where searches are terrible).

Sounds like you have come to terms (mostly) with chemo coming your way. Remember, it is KILLING CANCER.

HUGS!

iammags , hoping for a low score for you today!

mlp your pups are beautiful

Nancy, grade 3 is a more aggressive cancer so chemo is a given generally. Crying is good for you to do to get the emotions out. I understand the shock. I was told small tumor blah blah blah and ended up with two positive nodes and extensive LVI. It's only because my oncotype came back as 13 that I managed to skip chemo.

Mags, in your pocket for a low oncotype. I went with DD 23 yesterday to her genetic counselor to get her results. She's positive for Chek2 like me. Because my sister had breast cancer in her 20's they want to do annual MRI and physical examination until she's 30 and then annual mammogram.

LTF, I just read the following article and thought of you. Ashkenazi Lethal Gene. You had mentioned you are Ashkenazi. I hope it does not produce anymore anxiety. What I found interesting is how there are groups of peoples who have no idea they have a Jewish lineage and could be carriers of Jewish-specific genes. I can't remember: did you have genetic testing done? I am thinking you did. Hope your chemo goes smoothly and you feel good!

HUGS!

MLP - You are an inspiration (and your dogs are beautiful!)