57 years old, diagnosed with clinical stage 1, grade 2
Hi all,
I'm sorry to join the club but I am comforted by how many strong people are here. I've been reading and lurking for about a week now. I am interested in a couple of things: 1.The doctor was very clear that this is clinical stage 1, is that bc they really don't know what stage it is until they remove it? 2. On the ultrasound and mammogram the lymph nodes looked clear so they did not biopsy them. What does this mean? We are still waiting for the rest of the path report (we know it's IDC) so I don't know about hormone receptor status, etc. 3. The tumor is small (1.2 cm). Am I likely to have a mastectomy or a lumpectomy? What factors will go into that decision? I know it's a lot of questions but I am betting you have answers. I am not falling apart, just calmly moving forward, with the assistance of a little xanax. Surgeon appointment is June 19. Oh yeah and I'm having knee surgery June 13 to repair a torn meniscus bc when it rains it really rains.
Thanks!
Comments
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Hi ohioproud!
((Hugs)) No one wants to have breast cancer. Here are my thoughts on your questions:
1. No scans are perfect, so until you have surgery, the size of your tumor and any node involvement is somewhat speculative. So, staging won't be clear until after surgery.
2. Your surgeon will probably take a few lymph nodes out during surgery (the sentinel nodes -- those most likely to be compromised). If those are clear, he/she won't take more out and will assume that the ultrasound and mammogram were accurate.
3. The tumor is small, but as to whether you have a lumpectomy or mastectomy is up to you. If you are an A-cup, you may prefer a mastectomy and reconstruction because a lumpectomy will produce a poor cosmetic result. I was a C-cup; a lumpectomy didn't have much of an impact on my affected breast. Also, if you have more going on than a small lump (tumors in different parts of your breast or widespread DCIS), you may opt for a mastectomy. Also, if you have a lumpectomy, you will be advised to do radiation. Some women who choose a mastectomy can avoid radiation. Finally, if you have a lumpectomy, you will have to have mammograms every six months. Some women choose a mastectomy so they can avoid scans and the anxiety they produce.
Knee surgery? Ugh. Hope that goes smoothly and that you're mobile soon!
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Thank you ElaineTherese for all those answers. I guess I will have to wait and see--the waiting is truly the hardest part. Every time I get information I feel calmer. Knowledge really is power. I will have my knee to distract me until the surgeon meeting. I am a life long runner (hence the injury) so I am anxious to fix my wheels so that I can run again. I am certain that running will come in handy as I go through my breast cancer journey.
And thanks for the hugs, I sure do need those!
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I completely agree with ElaineTherese and want to say welcome, although I certainly hate the circumstances that find you here. There is so much information and support on these boards. Don't hesitate to ask if you can't find information that you need. ((hugs))
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Hi ohioproud! So sorry you've joined the club, but it looks like you are very early stage. BUT, I was initially diagnosed as Stage 1, after biopsy. Following surgery it was another reality (2 nodes were found with micromets), and I was bumped up to Stage 2. So, just keep it real until after you know all the post-surgery details. Hopefully nothing will change.
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I've got a little more info but I'm not sure what the lymph node information means. They had told me that they did not see anything in the lymph nodes so they did not biopsy them during the needle biopsy. But here is what it says:
Grade 2 invasive mammary carcinoma with ductal and lobular features.
12 by 8 by 10 mm
No lymphadenopathy
5 morphologically abnormal lymph nodes (does this mean they are involved/malignant?)
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You need to get a complete pathology report, plus explanations about what the terms mean. Everyone I know has gotten this information. DEMAND IT if necessary.
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I know, I feel like the doctor is only giving me bread crumbs, not the whole story. She reported all of the findings to me except for the lymph node part. We meet on the 19th to discuss the rest of the path report. I'm so confused and also terrified. I can call her on Monday. Actually, I just called her answering service so hopefully she will call me back this weekend and answer my question. Sheesh.
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No reason to be confused. Demand the information or take your pathology report to another oncologist. EASY.
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Pupmom, I did that. Called the doc, got someone who is on call. She looked at all the reports and said that no lymphadenopathy is the exact opposite of morphologically abnormal lymph nodes. She looked through all the reports and said they all showed no lymph node involvement and that is why they did not biopsy them. She thinks it was a misprint of some kind and will follow up to clear it up.
This leads me to another question: I have a breast surgeon--how do I get an oncologist? Who else needs to be on my team? I feel like I've entered a foreign country and I don't know the language or any of the culture.
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If you have been diagnosed with breast cancer in the U.S., the surgeon should have recommended an oncologist. Something is off here.
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Ohioproud - it's amazing how each person's experience varies so widely. Many of the women here saw their oncologists prior to surgery. I did not. I asked my surgeon if he would be sending me to oncologists and he said yes - but that happened after my surgery. One step at a time, I guess.
As for LX vs MX, it's a very personal decision and something you will discuss with the surgeon. S/he can tell you exactly what s/he will do. The appearance of your breast post LX depends in large part upon where in your breast the mass is located and its ultimate size - mine was a bit smaller than originally estimated. I can't tell yet what my breast will eventually look like as there is still swelling from my surgery and there may be some swelling from radiation. My breasts are on the small side. Given the choice of an LX with radiation, I grabbed it as I didn't want the more extensive MX surgery.
Best of luck with your knee surgery and your consultation with the BS.
MJ
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my bs referred me after the surgery which is common if they believe u are early stage here in Canada. However I was lymph node clinically negative all along and then after my final pathology surprise a positive node. Also my ultrasound showed tumour at 1.5 then after surgery was 2.2. In the other hand the MRI showed tumour to be 2.5 so was a bit smaller than that but the MRI also missed the positive node. Shouldn't be surprised when my mammogram missed the while dam tumour in the first place!
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I am sorry you are dealing with this.
I agree with ElaineTherese, too.
I will add that I found it helpful to set up consults with plastic surgeons (I saw 2) to know options. Some of our treatment choices can impact options, so I wanted to make an informed decicision that was right for me. It really is a personal choice. Some choose no recon at all.
I did not wait for a surgeon to refer me to an onc or ps. I researched on my own and set that up. If you do set those up, Look for a board certified plastic surgeons who are experienced with recon.
Good luck!
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Everyone has given you excellent advice but I wanted to recap a couple of points.
First, your meniscus surgery - start excercising your quad now. Wall sits/slides are excellent. It makes it much easier to get up from sitting (i.e. the toilet) after surgery. I swear by the Cryocuff. Even used mine all night. The cold really helps with the pain and the cuff part made a nice little cushion around the surgery area and made it easier to sleep. I got mine on eBay.
Choosing between lumpectomy and mastectomy is a huge decision and one that you should research carefully. Your dr will give you advice but if you do your research you will know in your heart the right answer for you. Just remember that lumpectomy goes hand in hand with radiation so you need to be aware of the side effects from radiation. Normally you do not need radiation after a mastectomy but it is a bigger surgery and then there is the whole issue of whether you want reconstruction or not.
My breast surgeon scheduled my first appointment with the oncologist for one month after surgery. That gave us time to get all the pathology reports back plus the Oncotype test. My oncologist said I was a good candidate for an AI (more research for you) and because of my Oncotype score and the clinical features of my tumor that the risks from chemo outweighed the benefits so I got to skip it.
This is a lousy topic to have to become an expert on but the more you know the easier the decision making process will be for you. I'm 1 year out from a diagnosis very similar to yours and life is good
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Boy this group is a lifeline for me right now.
Thanks for the response--I agree, the more I know, the better off I will be. Nearly 10 years ago I had a craniotomy for a benign brain tumor (it sure didn't feel benign!) so I was hoping that could be my lifetime health scare. But it is what it is. Thanks again for writing back, LuckyNumber47.
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Ohio proud it's a good thing you're having the torn meniscus fixed first. I made the mistake of telling my knee surgeon about my breast cancer and he's extremely stand offish now. Now I need to find a knee surgeon who isn't freaked out with someone who has cancer. 2nd time around with it but still stage 1.
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I just know I have breast cancer as of yesterday. I am 65.
I have been reading a lot here. So much I do not even know yet about my cancer. Feeling anxious. But so happy to have found this site and all this information.
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Sharrose I'm sorry you've had to join us but yes we are all here for each other
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Thank you kira 1234!
I will be here often.
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If you need to talk we're here
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Ohioproud, I used to live in OH. Some great medical care there!
As soon as I had a positive biopsy, I was given appointments to meet with my breast surgeon, medical oncologist and plastic surgeon, all on the same day as well as get lab work done. It was a bit overwhelming but I was very happy to have such an integrated team approach since so many treatment decisions are dependent on other decisions. It's also convenient that they are all in the same place. A friend of mine had the same team 2 years ago when she had her surgeries and chemo so I know I am in good hands.
Every time I have had a test done, I ask that they give me a copy of the official report. It helps a lot to read it myself rather than just trying to remember everything that is told to me over the phone. My hospital system has a private patient portal where they can send them to me online. Ask if yours has something similar.
Best of luck!
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Hi: I'm 60 and was just diagnosed with DCIS and IDC in May. I had my surgery on June 16. Everything came out fine - clear nodes, clear margins, tiny tissue (it wasn't even a tumor) that the surgeon removed. I saw her today for my post op appointment and we were saying how great everything was when I asked her about aggressiveness. I'm a terribly anxious person. The surgeon said she wasn't going to bring that up, but since I did, I'm grade 3 which means it's nasty and aggressive. She said she could save my breast but I'd have to get in to see an oncologist and radiologist to save my life. She completely flipped me out. Does anybody think that's just intense bedside manner that I'm hearing? I'm still on the verge of a panic attack from the way she worded things.
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No, I think your doc probably gave it to you straight. But I don't care for the way she backed into it. What does that mean - she wasn't going to mention it. Sounds like maybe you had a lumpectomy? Does that mean she didn't get clean margins? Or that there were lymph nodes involved? You need to ask her a bunch more questions. Go to My Profile and put what information you have about your diagnosis & treatment to date.
Since you have IDC you should see an oncologist and maybe a radiologist. Be sure to get your path report & determine if you are ER/PR positive and if you are HER2 positive. Both of those things will make a difference to further treatment. And any other scans or X-rays that have been done.
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Hi MinusTwo:
I had my surgery and had clear margins and clear lymph nodes. What she removed wasn't even a tumor, it was a 1/2 inch long piece of tissue. I caught this very early with a routine mammogram. I don't have the information yet on ER/PR positive and HER2 positive. Not sure why I don't have that. I guess the oncologist needs to do that, if I can ever get in to her so she can save my life. I thought everything was good with the above information from my surgery. I was feeling upbeat and like this thing isn't going to be that bad. And then she uses the wording she did and made me feel like my life is hanging by a thread.
As I said, I'm trying desperately to get in to the oncologist. I've seen a radiologist and will go back to her after I get in to the oncologist.
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Kimhf when did you have surgery and where. I knew much of this information even before surgery by the biopsy
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I had it on June 16 in Sacramento, California. Not sure why I don't have that information.
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Your surgeon may be able to give you the details you need. It's in your sx path report. You can always request to get a copy or if you have an online chart you can find such test results there. I found my stuff out before I met my MO.
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If you are feeling very anxious, you may consider working with a counselor during this time. I helps to have guidance to deal with the anxiety portion of your diagnosis. I know that a breast cancer diagnosis is so shocking, but we can't deny that it existed in us at one point in time. I had mine found on a mammogram, had tissue taken out, recovered, had radiation, hysterectomy/oopherectomy (my choice), now on Tamoxifen and am doing fantastic. Just because you have breast cancer, does not mean you can't live a healthy and happy life. Hang in there and get your information together.
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Thank you for a great response, Michelle. It makes me feel better. I'm flipping from fear and stress, especially since I learned yesterday I'm a grade 3, something I did not know. I have an appointment this afternoon with a counselor. Finding a therapist was one of the first things I did!
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The (only) "good" thing about grade 3 is that chemo has better results with this grade than the others.
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