Lumpectomy or mastectomy? How did you decide?

sandra4611

I appreciate your comments, but choose to believe my oncologist that I am free of DCIS and LCIS now. She was very angry today when I spoke to her and said she couldn't understand anonymous non-medical people on a discussion board who had no access to my records would think it would somehow be helpful to me to hear that I could get DCIS or LCIS again. If there was any chance of a reoccurrence, she told me today, she would have recommended chemo or Tamoxifen at the very least.

I go to a large well funded medical center with state of the art equipment and top-notch doctors with years of experience. They say my DCIS in one breast and LCIS in the other were discovered very early. I chose a BMX and my cancer medical team has assured me that I will not get DCIS or LCIS again because I no longer have ducts or lobules and those cancers MUST have those to grow. They cannot grow in left over breast tissue although there is a 1 - 2% chance that some other kind of cancer could. The cancers were small, not invasive, and my lymph nodes were negative.

It is not helpful to tell someone 8 weeks out of surgery that my oncologist could be wrong about my prognosis because other anonymous women have said they had a reoccurrence of DCIS after mastectomy. What do you want me to do with that information? Worry for the rest of my life? Confront my oncologist? Go to another doctor? Seriously, you have all really upset me although I don't think that was what you meant to do.

LAstar

Sandra, no one is trying to upset you. These are discussion boards and we are doing just that, discussing treatments, recurrence, risk, etc. We are all in the same boat and we all hope for the best. Information about BC changes all the time and it's helpful for some to discuss the latest research. I don't think that your doctor should get angry with you for participating in discussion boards! But if it is upsetting you, maybe be choosy about which discussions you participate in, especially so soon after your MX. I've taken some breaks from this board because I've found it makes me worry sometimes and I also get caught up in the trials that others are going through, when sometimes I just need some time without thinking about cancer.

sandra4611

The oncologist is NOT mad at me. She is angry at people on discussion boards who can so easily plant seeds of doubt that make patients worry their doctors could be wrong. Let's stick to discussing our experiences and trying to support one another.

SelenaWolf

All it takes is for one cell to be left behind and the whole process can start all over again. And most surgeons will tell you that they can never guarantee that 100% of the tissue is removed.

LAstar

I'm a statistician, and there is no separating my experiences and my decisions from the scientific research available to me. It is fascinating to me. Beesie was hugely helpful in pointing me to a lot of the research that has been conducted on DCIS, and I thank her for that. I want to know what the research says about recurrence and how to lower my personal recurrence risk. For me, it is not a seed of doubt. Knowledge is power.

MelissaDallas

i believe the best way we support each other here is with factual information. I work very hard, especially in the threads for women who are waiting for diagnosis or high risk, to dispel incorrect information, lots of which scares them unnecessarily. i have been doing that for a long time now and I devoutly hope I have made the experience less fraught for at least some of them.

My parents were both teachers. They taught me that nothing you learn can hurt you, whereas the opposite is most definitely not the case.

Nobody here is trying to upset you and I am sorry that you feel that is the case.

Beesie

Sandra, I'm very sorry if my post upset you. That was not my intent at all. On this board we regularly share the information that we receive from our doctors and the things that we've learned as we've educated ourselves about our diagnoses. That's all I was doing. Sharing information, based on what I was told by my doctors, based on what I've learned by scouring the DCIS research, and based on what I've seen happen to other women who've come to this board and who've had a MX for DCIS.

Please understand that I was talking generally about all women who've had a MX for DCIS; I was not in any way talking about you or your prognosis. Obviously I know nothing about your diagnosis and your prognosis - your doctors are the experts on that.

I understand your point about sticking to a discussion of our own experiences, but I have to disagree with you on that. Sharing our experiences can be very helpful to others, but we always have to keep in mind that our experiences are unique to ourselves and may not be relevant in any way to someone else. Because of your diagnosis and pathology, your doctors feel that you have 0% chance of a DCIS or LCIS recurrence. That's great for you, but it might not be accurate information for someone else who is reading this, someone who had a different DCIS diagnosis and a different surgical pathology after her MX. That's why personally I think it's important to talk more broadly about the experiences of all women with DCIS, and to share information from research studies.

For your information, here is one study that talks about recurrence risk after a MX for pure DCIS:

Close or Positive Margins After Mastectomy for DCIS: Pattern of Relapse and Potential Indications for Radiotherapy

"Between 1994 and 2002, the pathology reports of 574 patients who had undergone mastectomy at our institution for pure ductal carcinoma in situ were retrospectively reviewed....

With a median follow-up of 61 months, 6 (7.5%) of the 80 patients developed local recurrence. Of the 31 patients with a margin of ≤2 mm, 5 (16%) developed local recurrence vs. only 1 (2%) of 49 patients with a margin of 2.1–10 mm (p = 0.0356). Of the 6 patients with local recurrence, 5 had high-grade disease and/or comedonecrosis. All six recurrences were noted in patients <60 years old."

All 6 of the recurrences in this study were invasive cancer, but a couple of the recurrences included a DCIS component as well as the IDC. The conclusion of the authors was that "Patients with additional unfavorable features such as high-grade disease, comedonecrosis, and age <60 years are particularly at risk of local recurrence. These patients might benefit from postmastectomy radiotherapy." This study came out in 2008, and since then I have seen quite a few women come through this board who've had a MX for DCIS and who've then gone on to have radiation to further reduce their recurrence risk, which was judged to be too high even after a MX because of the unfavorable features of their pathology. This study therefore may not be relevant to your experience, but it is important information to share with anyone who is newly diagnosed with DCIS and who is thinking about having a MX.

Edited for typos

ruthbru

I didn't come on the discussion threads until a year after my treatment ended because my emotions were too raw, and you might want to take a break, or stick to threads that you feel positive about. Everyone handles things differently and there is no right or wrong way, but when a person is trying to decide on treatment choices and asks for input, we who have faced those choices will tell our stories, and share the information we have gathered (sadly through our own personal experiences), to the best of our abilities. Some of the information I gathered from the home pages of BCO caused me to question my oncologist, and actually changed my treatment course....which made him question some of the practices at the clinic (he was a new doctor there), which changed the whole protocol for future patients.....so sometimes a lay person is right, and, to me, knowledge is power (even if it is something that I don't want especially to hear!).

jbdayton

Thank you for this discussion. I had my BMX and my invasive cancer was completely removed. I only had 5mm of cancer left because I did chemo before surgery. BS was hoping for no radiation but a very small area of DCIS was identified in the original tumor bed. the margins were questionable so the decision was made to do a course of radiation. Chemo does not kill DCIS so the fear is not more DCIS but a potential to progress to a new or recurrent invasive cancer again. I was told it was mostly due to location, the two areas of most concern are near the chest wall or the skin. Please be open to discussions because sometimes it is just in the wording. All it takes is one word in a persons pathology report to change the entire outlook.

Swoosley

1. I'm confused as well. I was told I have a "lesion". That I had to have a biopsy. When that came back positive for cancer ( the surgeon didn't tell me what kind or what stage ). He said I have to have a larger area taken out to test it. THEN they will test the nodes and do a petscan. Why can't they tell from the biopsy? I had an MRI Done and am meeting with the surgeon for the results. I have an appointment with an oncologist for a consult. Am I going about this right? What's my next step?

Ridley

Hi Swoosley,

Sorry you find yourself here dealing with this. I can tell you the order of steps for me. I had a biopsy that was positive for cancer -- I didn't know details of the stage at that point. Then I had more imaging including an MRI and a couple of additional biopsies. I also had a bone scan, chest x-ray and abdominal ultrasound to check for evidence of spread (I'm in Canada and in my area, I don't think they use petscans, but this is likely for the same purpose). Then I had surgery, at which point I had the cancer removed and had my sentinel nodes tested.....................................................................................................................................................................

I didn't meet with my medical oncologist until after surgery. If the lesion/tumour is large, then sometimes chemo is given before surgery to shrink the tumour. Otherwise, the decision re: type of surgery doesn't usually involve the med onc.

I hope that helps a little.

Ask your surgeon to set out a timeline for you -- mine did that and it was helpful to know what was coming next. There can be some changes in the plan depending on outcomes, but at least it will give you an idea.

Good luck -- come back and ask any questions you have.

keepthefaith

I spoke with all of my medical team prior to any treatment. They gave me their (initial) recommendations based on my biopsy pathological report when I was first diagnosed. But, further testing is usually done to decide if and when chemo will be done, what type of surgery, if any, etc. You can ask your Dr for a copy of your reports and probably should. Personally, I would seek out a MO before making any treatment decisions, but that's up to you. I will be having surgery on Friday, then will meet with my Breast surgeon the following week to go over final path report, nodes, etc. After that, will meet with my MO again to get a treatment plan together for chemo, etc. I hope that helps. Best wishes!

Kalonis52

Hi honey, First of all, I am sorry for your diagnosis. I have been there to. Honey, it is a personal decision. I based it on how large my lump was. I had a 2.5 cm lump. Large. However, I first had the Biopsy, and then, the Lumpectomy. And, then I had a left breast Mastectomy. When you have a Mastectomy, it reduces the chances of getting BC in that Breast again. Just do it. It will save your life. I did, and, I had Reconstruction later. If you need to talk or have any questions I am here for you.

Take Care, Kaloni

sandcastle

Kalonis-45 ......You, said exactly what I have been thinking....you posted with Kindness and Integrity.....Liz

PRB1956

Thanks again for all the replies. My surgery is this Monday the 21st, and I am somewhere between a meltdown and calm. I've decided on the lumpectomy, but still not sure it's the right choice.

The soreness in my underarm just convinces me that this has spread. I am so worried...not to mention that my gallbladder has hurt for a month. My mind whirls with all the what if's. What if it's advanced and I need chemo? (I don't think I can do it) What if I do chemo and I need my gallbladder out? Can they do surgery? Even though I take care of my teeth, I always have problems. What if I need a tooth extracted during all this? I am a single mom....I drive my daughter 15 minutes to school everyday. How will I manage that?

Sometimes a calm comes over me because I think.. hey, maybe I'll just die during the surgery and all this will be over. Dying seems easier than facing the road ahead of me.

Oh..and I just found out today that they're moving my position at work to another group and I will have a new boss. People hate working for this supervisor. I was so distraught (yeah, I need extra stress) that I told the director I had breast cancer and I didn't need any more anxiety! He agreed to delay it for now.

I have certainly angered the Gods of the universe it seems... I could use some good news. Really.

Anonymous

For me I didn't really decide. I found a lump, the u.s. proved it looked suspicious so I went to a surgeon. He felt it and immediately recommended getting it out. He said he could do a wire biopsy but that if it was benign I'd probably worry about it anyway (he was right). I scheduled a lumpectomy (aka excisional biopsy) that confirmed it was positive.

I chose to have my BMX/recon much later after chemo and rads. I wasn't sure about my tx plans other than chemo and rads and needed time to collect information and weigh options. When I finally did go with my BMX and immediate recon I was prepared, informed and happy to do it. I had very dense breasts and ILC tends to hide from normal scans. I'm happy with the results. My good breast revealed some mild hyperplasia so I was glad to have both removed.

Claire

Anonymous

Here's some good news, pbr1956. Usually what we worry about never happens. Try to tell yourself a different story: that you are now hypersensitive to little aches and pains because of your dx (we all know that feeling!) and there is no spreading. You won't die during surgery, you'll wake up and you'll realize that you have a lot less cancer in you (maybe no more!) than you did before. You did the right thing by avoiding any more stress at work. Protect yourself, you are the best advocate for your health. If you do need chemo, it takes a little time to get everything set up and scheduled. I went to see my dentist to make sure everything was okay before I started chemo. I found my dental hygenist had bc years before and she because a trusted source of support! And if you need surgery during chemo there are plenty of meds that can be administered to make sure you stay healthy.Chances that you'll need surgery during are slim, though. It's okay to be nervous and scared about everything. That is normal. hugs

Claire

keepthefaith

PRB1956,

This is scarey b/c it's something you have never done before. But, remember with surgery, they will have more information than they have now and it will help them plan the best treatment for you; plus, like Claire said, you will be ridding yourself of it!  My surgery is Friday. Not worried about it so much, but more nervous about what they will find. Although, I feel I will be fine, I am just worried about the aggressiveness of my tumor.  If you do find you need chemo, you should probably go to your dentist beforehand to prevent any problems.

Wishing you the best!

 

LAstar

PRB1956, it's normal to fear the worst, especially when you are a mom! Take it one day at a time and give yourself breaks from thinking about it when you can. Early on, a break of 5 minutes feels like a small victory. I found that time with my daughter was when I could stop thinking about it for a while. She is so in-the-moment and she reminded me why I will do whatever I can to have a long healthy life. You can look forward to the post-surgery euphoria too. It is so wonderful to have it behind you! Wishing you the best -- you are stronger than you know.

Beesie

PRB, congratulations on making your decision. It's not an easy one to make! Now that your decision is made, the best thing to do is to keep moving ahead and not read (or at least not take to heart) other viewpoints that might cause you to second guess your decision. The studies have shown, over and over and over again, that a lumpectomy + rads is as effective as a mastectomy, so both choices are equal from that regard. That means you get to do what you feel most comfortable doing. Just because someone else feels differently doesn't mean that your choice isn't the right one for you. Always remember that.

As for your worries, as the others have said, that's completely normal. Even after your surgery is done, and even if you get the best possible news from your pathology, you probably will be fearful for some time. A breast cancer diagnosis is a shock to the system; the fear that you are feeling and the worries that you have are a normal reaction. Just remind yourself that the only thing that counts will be that final pathology report, and until then, there is no reason to be thinking about worst case scenarios and 'what ifs'. Even though sometimes it's hard not to. We've all been there! :-)

ruthbru

PRB, glad you have come to a decision. Now, just go forward, don't second guess yourself. Try to banish all the 'what ifs' from your mind. If something bad happens, you'll deal with it then. If the bad things you are worrying about don't happen, then you will have wasted your time worrying for nothing!

You will actually feel better once you get started with treatment, each phase is a step toward being DONE! Hugs!

Kalonis52

Hi Sandcastle, Thank You honey. Your so sweet.

Kaloni

Kalonis52

Hi honey, That was quick! Great. Yes, having those emotions are normal. Yes, stay calm if you can. Ha..It will be fine. Ok, you decided on the Lumpectomy. This is ok. If you change your mind afterward you can always have the Mastectomy. I know, it is a fear of losing your breast. It is ok though. Honey, your getting anxious about the what if's. Don't do that to yourself. Take it one step at a time, as you go through your treatment. One day at a time. If and when something does happen your doctor will know exactly what to do for you. Remember, be positive! And, honey, this is not a death sentence. Don't think this way. All good will come in time. Just be patient. If you have any questions feel free. Im here.

Take Care,

Kaloni

Beesie

Kaloni, after someone makes up her mind after struggling about her surgery choice, I think we should be supporting her and reinforcing that she made the best decision for herself, rather than sowing seeds of doubt. When I read your comment "Ok, you decided on the Lumpectomy. This is ok. If you change your mind afterward you can always have the Mastectomy." it seems to me that what you are basically saying is "Okay, you made the wrong decision but you can always change your mind later and do the right thing."

For you, a MX was the right choice. That's fine. You get to choose what you want to do. None of us however get to choose what someone else does, nor should we ever tell them what they should do. How can we know what is best for someone else? I had ignored your earlier comment saying "When you have a Mastectomy, it reduces the chances of getting BC in that Breast again. Just do it. It will save your life." but frankly that comment was very inappropriate and factually wrong. Presenting and discussing MX as an option is one thing, but it's very different to be so directive and to flat out tell someone that this is what she should do. Saying "it will save your life" is clearly an attempt to scare someone and influence her decision. It's also misinformation. The fact is it's been proven over and over again in study after study that having a MX has no impact on survival. Breast cancer in the breast is treatable. It is only when breast cancer cells move outside the breast that the disease becomes terminal. And this is why removing one's breasts does not impact survival.

I'm sorry if this post appears to be rude or inappropriate, but I think it is no more inappropriate than telling someone she should remove her breasts when it's not medically necessary (and it's not clear that it's what she wants to do) or implying that someone made the wrong decision.

Whatever happened to supporting someone else's choice, even if it's not what you personally would choose to do?

PRB, as an FYI, I had a MX but only because I had no choice. Given a choice, I would gladly have had a lumpectomy + rads. That was how I felt when I was making my decision, and that is still how I feel now, 8 years after my surgery. A MX is life changing in a way that a lumpectomy isn't, at least for most women. The changes from a MX affect you for the rest of your life. For some women a MX is necessary or is the best choice, because they are so high risk. Other women choose to have a MX for other, more personal reasons. And then sometimes the decision is made out of fear or misinformation or because of pressure from other people. If medically a MX is your best choice, then that's the right thing to do. If you know deep down that a MX is the right choice for you, then that's the right thing to do. But if a MX is not medically necessary and if you are unsure that it's the right choice for you, then there is no reason to do it. And you certainly should never do it because it's what someone else tells you to do or because it's what someone else did.

ruthbru

ditto!!!!!

edited to add that I had a lumpectomy and am absolutely grateful that was an option for me. I actually have very strong feeling about why that is the way to go.... but through reading and talking to other women, I have realized that we all have different emotional feelings about the whole subject; and what makes perfect sense to me, might not make sense at all for the next person. Offering our own experiences, feeling etc. can be extremely helpful to someone while they are making a decision, but once they have decided what is right FOR THEM, then our job is to be supportive.

Kalonis52

Miss Beesie, For your information, My post should have no direct offense to you. I was not giving her doubt on the situation. I was just letting it be opened for her on which to decide. I am really sorry you took offense to my post. You definitely have a serious problem. I definitely would not even try to explain, nor stoop to your level of knowledge. Get help.

Take Care of yourself, Kaloni

Kalonis52

Hi honey, Just thinking about you. Remember to keep positive, and, strong! You will get through this with flying colors. Just be patient.

Take Care, Kaloni

lonnie713

It is a personal decision. My family history is strong, both grannies, my sister, my auntie. I discussed with my husband years ago about what I would do if I was ever diagnosed. When I found out, I knew instantly that I would have a bilateral mastectomy. I had my surgery on the 26th. I had the expanders put in and had my first expansion last week. I tested for the BRCA I/II gene and it came back negative. Regardless, I plan to remove my ovaries as well. My chemo starts on the 31st. My treatment regimen is AC-T. I am very happy with my decision. All the best to you.

sandcastle

After my mastectomy.......On my first appointment to the Oncologist he called my gyno......and he set me up with a gyno oncologist the recommendation was a hysterectomy......which I did and I am pleased with that....the road was hard.....but I made it.....Liz

knightzoo

Hello all, I'm hoping this thread is still active? I am doing neoadjuvant chemo and preparing to make my surgery choice. At this point (still awaiting genetic testing results) I'm assuming I'll have a choice to make, which I didn't before chemo, but the mass is definitely smaller. From the posts above, I have thought through the following:

1. Radiation: Either choice involves radiation due to node involvement ( maybe a week less with MX)

2. Does recovery time matter: yes - I'm so ready to be past this ordeal! I'm wondering if I do a UMX prior to raditation if I could have the other side done with immediate reconstruction after radiation because I'm concerned the healing time of BMX would delay radiation?

3. Body image: so strange to think about this because in the age of surgeries to reduce or enhance, I've always been perfectly fine with my body. I'm not sure how I feel about the lack of feeling. But I do like the idea of no bounce with foobs, since I'm a runner.

4. In general, I'm not an alarmist or worrier and I don't think having regular imaging would stress me out. It seem though that the studies say LX vs MX have the same survival rates, but the recurrence rates are higher with LX? Because I don't want to do chemo ever again!

Based on that, any additional advice for me? I plan to schedule my BS/PS consults as soon as I get my genetic results. Thanks! Oh, I'm 42 if that helps.