lumpectomy vs. mastectomy

ohilly

I'm pretty sure you all know me by now: this discussion board is my lifeline, and I have been emailing it often. I am still in the process of having tests and probably will have my surgery next Friday. So far I have been told I have a small (1 cm) tumor. They felt under my arms and told me they couldn't feel anything, which was a good sign (making it appear less likely there is lymph node involvement, but of course they can't tell for sure until the surgery). I've been told it's invasive intraductal breast cancer. I just had one very preliminary meeting with my doctors at which they just told me I will have to have more tests before the surgery. From this meeting, I am getting the impression that the doctors won't tell me what to do (mastectomy vs. lumpectomy), that's it my decision (probably because they are too worried about getting sued!). This is frustrating for me because I want some strong guidance. They told me the survival rates are the same for lumpectomy and mastectomy, but I have heard many stories from other women about recurrences. I am a very nervous person and I'm sure I will be obsessed with a recurrence once this is over. On the other hand, I got the impression from the surgeon that she thought it would be kind of drastic to have a mastectomy (again, she didn't say this straight out). She thinks it's early, probably stage I. I would like to hear the experiences of other survivors in terms of making the decision to have a lumpectomy vs. mastectomy if they had a similar type and stage cancer to what I have described. Please respond quickly because my last test is on Monday and I think I'll have to make a decision soon. Thanks for all your support and help. Ohilly

survivor51

Ohilly,
Don't worry how many times you post. This is a very scary time for you and very frustrating. I suggest taking the information to an oncologist and seeing what they say. That is what I did and got some good information so I could make a decision. Have you been on www.mayoclinic.com and put in breast cancer. There is a cite that talks about the different states and one with lumpectomy vs mastectomy. Don't do too much research on the computer but do go reliable places. Also, one big mistake I made was search for pictures. I found the true thing was nothing like the pictures. It was much better. They could not tell me lymph node involvement until surgery. I have had friends that had a lumpectomy and doing great. Today I spoke with a lady at the acupunturist and she had a lumpectomy and radiation two years ago. She is doing fine. One cooworker had the same and doing fine. She even worked on the days of radiation and left work at 3:30 and back the next day. I highly suggest having a breast mri to give you more information. There is info on that website about Breast MRI. Even if you go with lumpectomy, it will give a great picture for the future. It is a personal choice but with plenty of information to help you make the choice for what is right for you. Either way, we are here and post nightly if you want. I come on line every night so you are more than welcome to click the email picture below my message. My thought are with you. Angela

mgm42

I know exactly how you are feeling. You wish some giant authority figure would step in and take you by the hand and tell you what to do and what to think. I know that's what I wanted. Unfortunately, that doesn't happen. You have to ask questions, ask questions, ask questions. People here are willing to help you with tips and anecdotal experiences that are extremely helpful, but you need to ask the medical questions about your specific condition of your doctors. I opted for lumpectomy based upon what I believed was best for me, based upon the facts presented by my doctors in response to my questions, and what I read on the Internet. However my doctor cautioned me to only trust a few reputable sites, the American Cancer Society site being one. Also, I had to trust someone and that someone was my surgeon. She answered every question and offered additional information which made me feel confident about making my decision. I am Stage 1c, had only one tumor under 2cm, and my MRI showed nothing except that one tumor, as did my ultrasound. She told me I was a good candidate for lumpectomy and that recovery would be easier because of less surgical intervention. So, as long as I had equally effective choices, I chose lumpectomy. I had my surgery 6 weeks ago. I know I will have to undergo 6 weeks of radiation at some point followed by a 5 years course of arimidex and/or tamoxifen. I may need a short course of chemo before the radiation, depending on the results of a new test - an Oncotype test. I'm still awaiting those results. I don't know if this helps you any, but if there is anything I can do, please don't hesitate to ask. Everyone on this message board is wonderful. They are willing to share and support all of us who are just starting out on this long journey. Hang in there, kiddo. Your fellow traveler, Marilynn

phoenixrising

Hi ohilly, my surgeon encouraged me to have a lumpectomy due to the same survival rates as a mastectomy but I wanted the whole thing off. It didn't matter, I didn't want to take any chances and I felt that if it was all gone I might not have to have radiation. We also didn't know if there was any lymph involvement. There was and I have to say I am glad I insisted they take the whole thing. My breasts are small so I also felt that the lumpectomy would take out too large of portion anyway. I would only allow them to take out my sentinel nodes and kept the axillary.

About recurrence. Well unfortunately there are no guarantees no matter what we do, but if you are aggressive in your treatment you won't have to wonder down the road if you should have done more. This is something I may have to face as I refused radiation. I was told there was only a 10% benefit and I weighed that against possible heart/lung damage. I felt the most important thing I could do was the surgery and chemo. I may live to regret that decision.

Hope this has helped
jan

manna1qd

It is your decision and if the stats are the same, the only thing the sugeon might tell you is what she would do if it was her or recommend to her mother. Anyway, I immediately decided on a mastectomy with reconstruction. I put in the time for reconstruction (four days post op in the hospital). I had no desire to do radiation treatments. I had two children, 4 and 8 and drastic for me seemed to mean better at the time. Lost sensation of course and later missed it in the intimacy department. If I hadn't been in a panic and had small kids, I may have opted lumpectomy but I have no regrets. I don't know the insurance ramifications but obviously after lumpectomy, mastectomy is still an option, not visa versa. Hope that helps. I am interested in the other responses because I never took the time to ask. You are definitely getting as much information as you can and information is power.

mmontero38

Hilly:
What a difficult decision to face, isn't it? Ultimately, the decision is yours. I also had invasive ductal carcinoma. My tumor was 1.5cm and I made the decision to have a mastectomy. My reasons for that were the following: 1) I didn't want to go through radiation, 2) at the time, we were not sure how invasive the tumor was and I was afraid that if they did the lumpectomy and found that they had not gotten it all and the margins weren't clear, they would have to go back in and perform the mastectomy anyway. (That happened to a friend of mine. This way I avoided radiation and did 8 rounds of CAF(Cytoxin and Adryomicin) lost a lot of my head hair, lost all the other hairs (Great no shaving) and am now back on the road to living my life. I finished my last round of chemo on Nov.16th and tomorrow Feb 4th, I am going in for my reconstruction. Hilly, none of us can tell you what to do, but I hope that by hearing our stories we will help you in making the right decision for you. We are all friends here so post as often as you want we will try to help you in anyway we can. Also, on Tuesdays we meet in chat room 2 for a breast cancer talk and that helps because we are all on line giving each other advice and support. Join us then. Dana usually posts a message on this board to remind us. Hilly, I wish you all the best and good luck tomorrow in your testing. Lists all the pros and cons on a sheet of paper to help you come to your decision. Wishing you the best, Lili

mgm42

Why I LOVE This Site
I have wonderful doctors who provide me with all of the medical information that I need or want. However, its the people on this site, the survivors, who are providing me with "the nuts and bolts" for surviving breast cancer and making it through the very difficult decision making process, surgery, chemo, radiation, hormonal therapy, etc. ALL from the PATIENT'S side of the equation. For that I can't thank you all enough. Love, Marilynn

mrsbetty2

I have had both and am not sorry i did. Mine was only 1cm. also but they said they got it all and i could opt for chemo and radiation after but they didn't know if any lyumph nodes were involved. I went with the mastectomy and they found 3 out of 30 lyumph nodes were positive. Having done this,they said they got it all and i had 8 chemo treatments for percaution and am now on Arimidex for 5 years. I am not sorry i went for the mastectomy as i wanted to be sure they got it all. But like they say nothing is for sure. I can only hope and pray it doesn't come back in the other one. If i had only had the lump removed they said i would have to have radiation plus chemo. Good luck in your decision.

KathiM

I was stage IIB, invasive breast cancer, ER,PR positive, HER2 negative. In the sentinel nodes. Still, all I had was a lumpectomy. Two reasons: First, the recovery time from it was less, on the average, and I am self-employed. I had already lost time from the rectal cancer, so I wanted a fast solution. Second, even tho this may not matter to you, I was concerned about the change in my body (ego here) and how it would affect things. Prosthesis vs implant (which would be ALOT more surgery...I would go all the way to nipple tatoos...lol), and I already sport a 12" 'up-and-down' scar from my bowel resection. All stats being the same, I went for the less involved surgery. If the stats would have been favorable for mastectomy, I would have chosen that. My health is the most important thing.

That said, I am almost 2 years post treatment (I did end up with chemo/rads) and still NED.

BTW, ask about the 'new' radiation treatment(This usually is done when you know ahead that it's cancer...): After removing the lump during a lumpectomy, radiated 'seeds' are inserted in the hole left....over the next 5 days, these are replaced a few times. BUT, after the 5 days (instead of 33, like routine rads) it's over. Also, less damage to the lung and underlying tissue...

It's good to be informed. Don't hesitate to ask questions. But also don't fret too much over your particular situation until it happens..."80% of what we worry about never happens, and the other 20% we can do nothing about...so why worry?"

Hugs, Kathi

3cbrca

Hi Ohilly

I tried for a lumpectomy (by doing neoadjuvant treatment) even though a couple of my docs were pushing mastectomy. It turned out that it wasn't an option and I had a bilateral mastectomy with axillary dissection.
I'm not giving you advice - but I do know that there has been a lot of good research and that the outcome is the same. I wish I had been able to have a lumpectomy. See Kathi's posting about the option for targeted radiation (Mammosite). There are many options. I know that the amount of information is overwhelming but it is worth sifting through so that you are comfortable with the decision you make. For me, I know that I did my homework, tried my best and in the end did what I had to do and don't have regrets. There is enough to do after surgery without adding second guessing to the list. Maybe you can ask your doc for a social worker or nurse or someone who is knowledgable that will sit down with you and listen as you work through this - a "thinking out loud" session. I find that really helpful when someone lets me just talk and talk. Somehow after that it gets clear in my own head and I come to my decision....

Sheilah

mgm42

3cbrca said:

Hi Ohilly

I tried for a lumpectomy (by doing neoadjuvant treatment) even though a couple of my docs were pushing mastectomy. It turned out that it wasn't an option and I had a bilateral mastectomy with axillary dissection.
I'm not giving you advice - but I do know that there has been a lot of good research and that the outcome is the same. I wish I had been able to have a lumpectomy. See Kathi's posting about the option for targeted radiation (Mammosite). There are many options. I know that the amount of information is overwhelming but it is worth sifting through so that you are comfortable with the decision you make. For me, I know that I did my homework, tried my best and in the end did what I had to do and don't have regrets. There is enough to do after surgery without adding second guessing to the list. Maybe you can ask your doc for a social worker or nurse or someone who is knowledgable that will sit down with you and listen as you work through this - a "thinking out loud" session. I find that really helpful when someone lets me just talk and talk. Somehow after that it gets clear in my own head and I come to my decision....

Sheilah

Sheila mentioned "mammosite" treatment. I tried to have that, but unfortunately, the cavity left from my lumpectomy was too close to the surface of the skin. Therefore, I was not a good canidate. The mammosite treatment is amazing. Not all hospitals and cancer centers offer it, but more and more are. Check out this type of treatment on this site. Marilynn

seof

This site is a great one for getting info beyond "just the facts, ma'am". As each new step approaches with new decisions, I have wished someone would tell me, "If you will do a,b,c, I can guarantee you that x,y,z, will happen. Do this", but alas, there are no guarantees with cancer. I knew from the beginning my Oncologist was strongly advising unilateral mastectomy, so lumpectomy did not enter into the decision very long, due to the size of the tumor and the lymph node involvement. As far as surgery is concerned, my decision was unilateral or bilateral. Doc. said statistically, long-term survival and recurrence rates would not indicate that bilateral mastectomy was recommended, but my Sister was in a similar situation and opted for unilateral, then it did recur and spread from the other breast throughout the body till she died. I know statistics and medical experts say we are all unique and she was one of the minority, but for my own peace of mind I wanted the double mastectomy. My insurance did not cover it, since the Dr. was not saying was "medically necessary". You might check with your insurance and ask the Dr. if there are sources for financial assistance in your area if it won't cover whichever you choose. Remember, you are the one who will be living with the consequences of your decision, not your surgeon. Do what you feel comfortable with.

Best of luck, seof

Susan956

Hey O'Hilly,

Sorry I didn't get a chance to write back on your last post. But I will try to give you information on both here. I have been offline for about a week. I was studying for a big test... Took it Sat & did fine...then found out that my Mom had been in the hospital the night before... but they kept it from me. She is having a Cath tomorrow morning and probably a couple of stints... So now it is my turn to help take care of her.

I was diagnosed with breast cancer when I was 48. Mine turned out to be Stage 2B.. About 2cm, and with node involvement. I chose to do a lumpectomy. It is a choice that I am still very happy with. I did a lot of research and the survival stats are the same for lumpectomy with radiation versus a mastectomy. When you have multiple tumors or they are bigger you don't get to make the choice of a lumpectomy. But mine was fairly small. It did require two surgeries to get an adequate margin and had we not been successful the second time I would have had to have a mastectomy. But for me it made me feel less deformed. I am single and one of these days I hope that I will find that special man in my life again. (My soul mate passed 5 years ago.) And since I am single, I thought that it would be less traumatic for me to go with a lumpectomy. But this is a decision that really is a personal choice.

As far as not being able to deal with the diagnosis, you will surprise yourself. A year before I found out that I had cancer, I had watched a lady that I worked with deal with it... and at the time I thought that I could never have managed to deal with it.... But when you are faced with it somehow God manages to give you the strength when you need it.

So take Care... and God Bless...

You will make it through.... Just like the rest of us here. Come here often... I found it to be a place of great support.

Susan
"A 2+ year survivor.... Looking to have more fun in my second 1/2 century..."

cabbott

Which surgery you choose is solely up to you. The surgeons can present you the statistics, but you are still the one who has to sign the papers and tell them what to do. I remember all too well having to sign those papers. . . . not fun and I was't very calm about signing them. As it was, as they were putting in the needle as a guide for the wire the surgeon would follow to the spot of microcalcifications I had (nothing had "proved" I had cancer yet), I had the radiologist check the mammogram in case there were any more iffy areas. He found the second site that I had been worried about. With two wires sticking out of my breast, I was really worried about how my breast would turn out. I was pretty sure it was history. Actually, the two lumpectomies looked pretty good when I came out of surgery. It looked like two cat scratches across a breast that was just a bit perkier than the other side. I forgot all about the path report and what might happen if the worst came to pass--which it did about two weeks later. Sure enough, both spots turned out to be stage one bc and I needed a mastectomy. Surgeons are very fussy when it comes to margins and looks. They didn't think I had enough breast to redo the margins both places and still look okay. Women with big breasts or just one site often get a redo to clean up the margins, but not me. So I ended up with a mastectomy. If I had a choice, I wish I could have kept my breast. No reconstruction will ever feel the same to a woman as her real breast, though a good plastic surgeon and a fair amount of luck can make a breast that looks normal enough. I have a lot of nerves, but they don't work like they used to. There is muscle tightness that I work out regularly so that I can stay active. The research gives the survival advantage to the lumpectomy plus radiation. So don't choose mastectomy so that you can live longer. I had no choice. The spots were too far apart and I was too small for anything else. The chemo decision will be based on your tumor's size and characteristics that the path report spells out. None of us get to choose what kind of cancer we have. It is a lottery ticket none of us wanted. If your tumor is aggressive, you may end up being advised to have chemo and radiation even if you have a mastectomy. Those treatments prolong survival. They are not your enemy nor are they the end of the world. The doctors years ago in the US believed that more tissue off would prolong life. It didn't. Research time and again has proven that. It does prolong survival to remove the primary cancer and to bother to get clean margins. Mastectomy should be a surgery of last resort. But you know and only you can decide if you can sleep if all you have is a lumpectomy. You could always go back and have a mastectomy in the future if your margins are not clean or if you can't deal with how you look after surgery.

Is your surgeon able to do a sentinel node operation to check your nodes? This operation is standard at most teaching universities, but not exactly standard in small towns like mine. More nodes out means more arm problems down the road. You won't be able to prevent this if the cancer has spread, but if they think it is still stage 1, they should try the sentinel node operation first.