recently diagnosed

moodyblues

Recently diagnosed but, don't have all test results back yet.  I have to choose in two days whether to have lumpectomy or mastectomy.  How many of you have had to have the surgeon go back in after a lumpectomy to take more tissue in order to get a clear margin?  IDC Grade 3. left breast only.  ranging in length from 0.2 cm up to 2.2 cm x average diameter of 0.3.  I am out of my mind trying to decide mastectomy vs lumpectomy.  don't know ER or PR or Her2 studies as they are still pending. 

ElaineTherese

Uh, why do you only have two more days to decide when you don't know whether you are ER+/PR+ or HER2+ yet? If you are triple negative or HER2+, it is often recommended that you do treatment BEFORE surgery. (That happens more in the US than in Canada, where the doctors tend to just do surgery first.) I did five months chemo before I had to make my decision (I'm triple positive). I chose a lumpectomy, and no, my surgeon did not have to go back in to get clean margins.

mustlovepoodles

I had to have re-excision to get clean margins.  It's exactly like a lumpectomy.

The thing that concerns me most about your post is the "need" to make a quick decision. IMO, you don't have nearly enough information to make such a life-changing decision.  You don't even have the results of your biopsy. How does choosing LX vs. BMX without learning more about them even make sense? You'd spend more than 2 days choosing a car, wouldn't you?

There is no "need" to rush into surgery. Sure, you're going to need some kind of surgery, but you have time.  In order to know your options, you need test results. If this surgeon is pressuring you to make a fast decision, I'd strongly suggest you run to the nearest exit. Your cancer is unlikely to magically start running amok in the next 3-4 weeks. You need to have a surgeon patiently explain all your options in great detail AND give you time to digest all the information. Ask questions if you don't understand something. Take notes. Get a second opinion, or a third if you need to.  My point is, you need to be rock-solid sure of your choice and right now you simply don't know enough.

Do NOT let anyone push or scare you into a quick decision. You could regret it for the rest of your life.

Cowboy-Up

You definitely have time to make a decision. I had surgery 8 weeks after diagnosis and still had clean lymph nodes. I wanted to do it sooner but I had to wait on genetic testing, it was the holidays and we had to find time for the plastic surgeon and breast surgeon to do the surgery together since I had a reduction. Take the time to gather all the information. They should be able to give you a size estimate, whether it is ER, PR+ and/or HER + or Triple Negative and the grade. Good luck with whatever choice you make

beautifulbooks

Hi,

Sorry you are going through this worry! I agree with those who encouraged you to not rush this decision. So much will depend on the pathology report. Some types of BC are treated with neo-adjuvant or pretreatment before surgery to help shrink the tumor down. The pre-treatment will be guided by whether or not your tumor is Estrogen Receptor (ER) + or - as well as HER2 status. A few weeks to gather information will likely help you a lot. I don't come to this forum a lot so please message me if you return with information or questions and I will answer. I am sure you will get a lot of support! I am not a BC patient but a nurse helping research for friends right now. Remember that there really is some link to high-stress actually suppressing your body's own ability to fight this tumor ~~ so make sure you sleep, laugh and generally stay as generally rested as possible. One step at a time

MinusTwo

I too had neoadjuvant chemo (before surgery) which is pretty common if you turn out to be HER2+. Which by the way may not be apparent with the first tests. By all means, get a second opinion. Anyone who is pushing you to move that fast looks suspect to me.

moodyblues

I talked Wednesday to surgeon, they just made a return appointment for Monday and we are hoping for all of the test results to be back in then.  After reading all the comments, maybe he meant to just think over the options till Monday...maybe he knew that I needed time to digest all this information and this new reality??  I was thinking that I had to decide by Monday.  I am feeling right now like it's already over before it's even begun.  Scared.  Panicked.  Breath is sucked right out of my lungs.

moodyblues

mustlovepoo thank you.  After reading all the comments, maybe he meant to just think over the options...maybe he knew that I needed time to take in all of this info?  I was thinking that I had to decide by Monday.  I was wondering how many folks had to go back in after a lumpectomy.  He said after Mastectomy 1-2 % recurrence.  Lumpectomy 9% recurrence.  Scared. 

moodyblues

Thank you Cowboy-up..  All this info is helping me a lot.  I appreciate your comments.  I'm thinking now that he meant to just think over the options till Monday.  He probably knew that I needed time to take in all this information.  I was thinking that I had to decide by Monday.  I am feeling right now like it's already over before it's even begun.  

moodyblues

Minus Two.  Still having a hard time trying to understand the Her2 thing. (not sure if that will be my results yet).   I am still confused after reading over Her2 more than once, not understanding it all.   I guess I will eventually.  Doesn't sound good whatever it is.

ElaineTherese

Hi!

HER2 is a protein that is in everyone's cells. It tells cells when it is time to replicate. However, in some cases of breast cancer, the cancer cells have an overexpression of the HER2 protein. That leads the cancer cells to divide like crazy, and means that the cancer is very aggressive (think big lumps and a high likelihood of spreading to other parts of the body). Before the development of targeted therapies (like Herceptin and Perjeta), breast cancer patients with HER2+ cancer had bad outcomes. Five years after diagnosis, only 40% of HER2+ cancer patients were still alive. Today, thanks to Herceptin, the survival rates of HER2+ patients are similar to that of other breast cancer patients (over 90% of women diagnosed at Stages I and II are still alive after five years).

If your cancer does test positive for HER2, your doctor is likely to recommend that you do chemo before surgery. That chemo regimen will be accompanied by Herceptin and possibly Perjeta (since your tumor is at least 2 cm in size). (In the US, it is easiest to get Perjeta as part of neoadjuvant (before chemo) treatment.)

Hope this helps!

jcpriest0469n

Thanks Elaine for the information about Her2+. I thought it was the opposite, Her2- was the bad guy.

moodyblues

Thank you so much!  It clicked.  I understand now.  Praying to not have Her2.  You have made me feel a bit better as the unknown is very scary.

bevin

Hi there moodyblues,

I did have to have margins cleared but I my case the surgeon was head of the hospital and so it was luckily done the same day . the patologists called right down to the operating room and said margins were not clear and the surgeon took more tissue.  He said in 25% of cases this happens and woman need more tissue taken for clear margins. So. seems pretty common. I especially understand this to be true if you have dcis as the cancer is in the ducts and they are working a bit blindly.  Good luck to you. I hope all is well.

mustlovepoodles

moody blues, I found this on the Susan G. Komen site. http://ww5.komen.org/BreastCancer/DecidingBetweenMastectomyandLumpectomy.html 

Survival

Overall survival with lumpectomy plus radiation is the same as with mastectomy.

Recurrence--

Compared to mastectomy, there is a slightly higher rate of the cancer returning to the breast (called recurrence or local recurrence) with lumpectomy. Any recurrence must be treated.

The risk of cancer spreading to other organs (called metastasis or distance recurrence) is the same for both procedures .

moodyblues

Thank you Mustlovepoo

MinusTwo

Moody - I was very grateful to be HER2+ because I was ER/PR negative. I wouldn't have had nearly as many good treatment options. Herceptin is a game changer. Not to mention Perject if you do neo-adjuvant chemo

moodyblues

All of you and MinusTwo, this is all so very confusing.  I get those results today (possibly-as my return MD apt is today) I have no idea what is a good result anymore.  I guess I am a newbie and just overwhelmed, I have no idea in the world I am doing here......the information is so large and I know so little.  I just want to be well again.

lovepugs77

Moodyblues, I just wanted to send you some well wishes for your appointment today.

moodyblues

Thank you lovepugs77.  It means a lot.  1:30 

kkdavis1961

moodyblues. I'm going in for a excisional biopsy surgery tomorrow. I'm also new here too, and I am scared and confused on what they will find. Good luck.

voraciousreader

moody...check out the NCCN's website and read the professional version of the breast cancer treatment guidelines. You might want to also tape your medical oncologist's discussion, so you can listen to it afterwards....

Good luck

moodyblues

kkdavis1961.  Praying for you now and will also tomorrow.  It feels comforting that all these women 'here' are helping us through.  Let me know how everything goes.  ((hugs))

ElaineTherese

It is true that being HER2+ means that you have more treatment options than those available to someone who is triple negative (ER-/PR-/HER2-). As a triple positive, I have all the treatment options available to those whose cancer is fed by estrogen, as well as targeted therapies for HER2+ cancer. ER+/PR+/HER2- cancer is the most common form of breast cancer and it is less likely to be treated with chemo than HER2+ or triple negative cancer. It's less aggressive in many cases, so it may be the "best" BC to get. (Not that BC is fun for anyone....)

kkdavis1961

Thanks moodyblues. It's just the not knowing that is hard.

BG46TN

Good Luck! I think you got some great information and advice from everyone else already....I just wanted to let you know I am triple negative, I am having chemo first, then surgery (a double mastectomy) in the end of April....not sure about radiation yet. I also have a gene mutation BARD1...so that is driving my surgery decision.

Ask your Dr lots of questions today and bring someone with you in case you don't catch all the information.

moodyblues

You guys are awesome! Thank you for all your informational help. I got my results today. ER+, PR+, HER2 +. Stage 1. Grade 3. IDC. The doctor seemed surprised that I wanted a mastectomy. I feel I will have more of a peace of mind after (if you can, after the word cancer enters your world). Can anyone tell me what the score of 3 means on my HER2+ results?

moodyblues

KKDavis61, hang in there. I know it is so hard to wait for the unknown. Praying for peace.

ElaineTherese

Your HER2+ status was discovered by the IHC test (ImmunoHistoChemistry). The ImmunoHistoChemistry test finds out if there is too much HER2 protein in the cancer cells. The results of the IHC test can be: 0 (negative), 1+ (also negative), 2+ (borderline), or 3+ (positive — HER2 protein overexpression).

Hope this helps!

moodyblues

It does. It looks like I have more options to fight this devil. Thanks for your help ElaineThere and BG46tn and for everyone that has been trying to help me.

moodyblues

kkdavis61, how are you today? Prayed for you and still praying for peace.