Lumpectomy Mastectomy Decision

[DonnaAB]

Mammogram showed microcalcifications; biopsy positive for DCIS Stage 0, noninvasive, grade 2.  No history of BC in mothers family do not know fathers family history.  What should I do?  I fear cancer and its recurrence more than I fear loss of breast (or both).  Age - 59.  Plastic surgeon discussed reconstruction by using an expander and implant.  I'm OK with that.  But I feel that my Breast Center pushes breast conservation so I feel in the minority for even contemplating a mastectomy ... What have others done with this diagnosis?

[CCF-RN,MSN-rf]

Dear DonnaAB:  In general, both lumpectomy and mastectomy are acceptable treatments.  Many health professionals and women lean toward the lesser surgery as outcomes are similar.  However, if you are more comfortable with the mastectomy approach, you should not feel bad if you are in the minority.  

[Happy4825]

When a year ago I found out, I had breast cancer. I decided that I wanted a Mastectomy.  I didn't want to worry about the cancer coming back.  I had stage one. I didn't want reconstruction, I am not sorry.  I take a pill each morning that the Oncologist gave me.  This is to keep the cancer from coming back. The operation wasn't bad at all.  You have to do what you want to do. Don't worry about what others think.  

[DonnaAB]

Thanks for reassurance.  I've been told by everyone that "this is my decision ..." but I don't want to overreact and go down a path that has more problems and complications as I am very lucky that my annual mammogram caught this so very early ... a lumpectomy and radiation seems the lesser course of action but for my worries that I will be fearful everyday for the rest of my life.  Does anyone know stats of recurrence if you have a mastectomy in the diagnosed breast and if the other breast is at greater risk in the future?

[Under Forty Pam]

I have the same thing as you, DCIS Stage 0  July 2006 no family history of BC.  I chose lumpectomy, I was afraid I could not cope with the loss of my breast at age 39 or probably ever.  I had radiation and take tamoxifen now.  I think the choice is yours ultimately, you have to live with how you look and feel the rest of your life.  The doctors told me the following reoccurence percentages for lumpectomy with radiation is 7%, lumpectomy with radiation and tamoxifen is 4%.  I figured I could handle those numbers.  Yes I still live in fear everyday but each day it gets a little easier.  I think once you have had cancer you live in fear for awhile no matter what choice you make.

[blondieny]

recently dx with the same, ihad a hard time decided lumpectomy or masectomy, i am 39 scarred that it would return, was leaning towards masectomy, seen plastics and he seemed to encourage it, after talking with oncologist i decided with lumpectomy, just got it done, very simple in out surgery. I feel positive with this decision, good luck

[japdip]

It is definitely YOUR decision and YOURS alone. Please do not be swayed from what you believe and desire by someone who's breast is NOT involved. I was fortunate in that I felt the way you do but perhaps for a different reason. My surgeon stated that he preferred a mastectomy for me BUT he made it clear that it was up to me and offered me a 2nd and 3rd opinion. I refused both and told him I wanted to have a mastectomy ... I was hoping there would be no lymph node involvement and thus no further treatment. Thankfully I was granted my wish for not needing chemo or radiation. Stick to your guns girl .... You are the boss .... it's your body.

[DonnaAB]

This forum is wonderful in that so many of you take your time to respond and to provide so much encouragement.  I don't know yet what it is going to take to finally come to a decision ...  I broke down yesterday for the first time when I was shown the various breast prothesis' and although they are wonderful and I can tell every effort was made in making them natural-looking .... I can't believe this is happening to me ... why do I have to do this?  I want to curl up in a corner and never come out.  My husband is wonderful and supportive but as hard as he tries he can't seem to say the right thing.  I don't have any other support system.  

[ezb74]

I was diagnosed with DCIS stage 0. I am scheduled to have a surgery done on 15 of february. Since I am only 32 I decided to have a lampectomy, I cannot deal with macectomy at that time. Could you please tell me how soon you were able to return to normal activities. I am in nursing school right now and it is very important for me. I understand every body is different, but what was your experience with the surgery. Thanks

[Under Forty Pam]

After my lumpectomy I spent about 2 days just hanging out and taking it easy.  I still walked around the house and went outside and things.  Iced the area a lot.  After that things progressed pretty quick, the doctor said I could go back to playing softball 10 days after surgery.  I was back working after the weekend.  Depending on what day your surgery is you might want to leave yourself 2-3 days for taking it easy.

[ezb74]

Thank you, it is very helpful information. My surgery is on Thursday, so by Monday I should be Ok

[BAMBI40]

Hi, I understand what you are going through.  I was diagnosed with Invasive Ductal Carcinoma 6 years ago.  My cancer was stage II, grade III.  Which scared the life out of me.  My surgeon told me that it was up to me whether I had my breast off or not and I wanted it gone.  He convined me otherwise, based on the position of the lump of cancer, which was very high up in my left chest he didn't have to touch the breast itself.  I also had 19 lymphnodes removed as well.  He said that if it was in the breast he would not do a lumpectomy and leave half of a deformed breast behind and would remove the whole breast.  He told me that most recurrences usually show up somewhere else in the body and removal of the breast would not stop that.  He also stated that with Chemo and then Radiation to the breast followed by continual check-ups and mammograms that he felt that was best for me.  I was only 34 when diagnosed and I am now 40.  Still very scared when I get sick.  Take one day at a time and make the best of it, and make the decision that you know you can live with!!

[blondieny]

the surgery was pretty simple i had it on a fri returned to work on tues only because iwasnt sure how i would feel but immediatly after surgery iwant to lunch nad shopping and that night went o my daughters basketball game. good thing they didnt have to check lymph nodes, i guess that would be the painful time. today is thursday and hope you did well be strong. I found out yest that my margins didnt clear so i am returning to surgery on tues. but knowing what the surgery is like not so scary.please let me know how your surgery went

[blondieny]

sorry i thought your surgery was yest, good luck on the 15th. I just reread my previous note and it amazes me how my mind races, my typing is pathetic. I think going through this your mind is going in ten different ways at once. esp when your sharing info with other women going through the same situation. I think the more info the better, and i also think you can get the most info from other women who have experienced it. I am also a nurse. I happened to be opening the mail when a copy of my path came through( i work for my primary care md)i knew i would be returning for more surgery but i feel extremely lucky that it is the dcis  

[carme]

The comment by your Dr. "He told me that most recurrences usually show up somewhere else in the body and removal of the breast would not stop that."  I have to disagree, having seen breast cancer reoccur in the remaining breast in my grandmother, my mother, my 2 aunts, 2 cousins and another friend, before it metastasized elsewhere in some of them. That's why I elected to have my remaining breast removed at the same time. Look in the archives...this is cancer, not a pesky mole.

[BAMBI40]

Sorry if I struck a nerve with you.  I know full well its cancer, not a pesky mole.  I had two surgerys, 5 months of chemo from which I was extremely sick and had all the side affects and 3 1/2 weeks of radiation and still living with the fear.  I guess the way my doctor put it  (not me) was basically the same as the statement made in your first reponse from CCF-RN,MSN-RF. Also like I stated "make the decision that you can live with". I know how hard cancer is and I feel for anyone who has been struck with this hateful disease.

[lizziecee]

I was dx with a stage 2, grade 2, 2 cm (why all the two's?invasive ductal cancer 4 years ago. Was given the option by my bc surgeon to have a lumpectomy and rads, or a mastectomy. Got like 5 minutes to make a decision - hubby said: "go for the lumpectomy - you can always go back for a mastectomy if needed". Really wonderful, wise guy.... Unfortunately, the 8 lymph node dissection (didn't have sentinel node then at my hospital) showed 2 cancerous nodes, so went back for total axillary removal, which showed more cancerous nodes. Then I was told I needed chemo - it was never mentioned before my two surgeries.  Not exactly a walk in the park, with 6 months of chemo and 5 weeks of rads, but hey, I am still here 4 yrs later and doing great. It was not easy as I also have Crohn's and spent some 4 miserable months on hospital prescribed Frutijuice whilst having chemo  - didn't eat any solid food and lost some 28 lbs. Today - I still have my breast, and despite a complication called Mondor's disease, am apparently cancer free. I didn't understand why I needed chemo and rads, still don't, but it has worked for me.

I don't understand, with a stage O dcis why your doctors are recommending a mastectomy - sounds a little over the top. I would get a second opinion if I were you.
Hope all goes well.
Liz.

[boninclyde]

I had widespread microcalcification and clusters of microcalcifications. My only option was Masectomy. Weigh your options and gather any/all information you can.

[ly3]

This decision is a tough one.  I could have done either, but after 4 months of chemotherapy, I decided to avoid that re-experience, I would have a mastectomy with immediate reconstruction.  Please see my post under breast reconstruction, Tram flap vs. implants 5/10/04 for details.  All of my BC "sisters" had different things done, based on personal convictions, research, and recs from their doctors, and nobody regrets their decisions.  Everyone is different, but the choice is ultimately yours.  I had multi-focal disease, and the concern was that there might be other unknown tumors and DCIS elsewhere in the breast.  I was heartbroken about waking up without a breast, but my breast and plastic surgeons were true artisians and I still look great.  And the pathology report revealed that I'd made the right decision.  Good Luck!

[DonnaAB]

After much soul searching, I decided to have a mastectomy with immediate reconstruction.  Even though the odds of a recurrence are small, if it does occur it seems as if it comes back more aggressive.  I've talked to many others and read both this forum and others where an initial lumpectomy, turned into another lumpectomy which ultimately led to a mastectomy.  I know that this might not happen to me but that chance exists and I do not want to live day by day with that fear.  What really confirmed my decision was looking at actual photos of reconstructions.  They were not bad at all ... yes a scar and a tatooed aureola but very natural looking, of course, not much if any feeling.  Does anyone know if the reconstructed nipple is made to look "hard/erect" all the time? Surgery is scheduled for Feb 16.  

[boninclyde]

I am glad I had my masectomy. After the surgery they found invasive cancer. Small but cancer. If I had not had the surgery they would have not found it. I do believe they reconstruct the nipple erect and hard. You can go to breastcancer.org (the discussion board there). You have to join. Then go down on the forums menu to breast reconstruction. You will have to ask for the password to enter but there are pictures of reconstruction and ladies there to tell you what to expect. I myself have been looking at it. I am now considering reconstruction. I did not do mine at the time of the masectomy. I just wanted the cancer gone and to heal first. And to make sure they got it all. Hope this helps. Also while there read about other women who have had lumpectomies. Consider all your options. Your moving in the right direction to heal. A good surgeon and plastic surgeon are very important.

[boninclyde]

A masectomy will not keep the cancer from coming back. Hopefully it will keep anything that is there from spreading. Your meds afterwards will be what keeps the cancer at bay. Just don't want you to think masectomy is a cure.

[DonnaAB]

I thought the mastectomy meant that the cancer would not come back in that breast or at least, extremely small chance in that all (at least that is the goal)the breast tissue is removed.  I was told that no further mammograms/MRI would be required on that breast. I've made my decision based on this scenario so I hope that I have good information.  What do you know to the contrary?

[boninclyde]

It is impossible to remove all the breast tissue. No you may not have to have a mamo but at some point there are other exray/scans that you will need. Cancer can also return at the incision site. So the masectomy is not 100%. Did you go to the other site I told you about? Please research there.

[ly3]

I chose mastectomy after a lumpectomy/biopsy and then a re-excision/sentinal node biopsy for more invasive tumor and DCIS.  The margins were still not clear, but only DCIS still showed.  So I had the choice to have chemo before a final surgery to have the time to decide.  After the chemo, I decided my best option was to get what might still be unseen in the breast, and avoid more chemo.  I had a nipple-sparing mastectomy tram flap, and haven't had any regrets once I saw the awesome job my surgeons had done (I wish you could see it).  The teamwork between the breast surgeon and the plastic surgeon is the key to a good reconstruction.  A friend recently was diagnosed with stage 0 DCIS, was recommended mastectomy, so she had the Diep flap and was quite pleased with the results.  She did not have to have chemo, thankfully.  I have a mamogram (mammogram) in both breasts each year, although fewer views are done on the mastectomy side.  I was told it was unusual for a recurrance in the scar--depends if the cancer was near the scar.  I don't worry about it much anymore.  Putting breast cancer behind me was tough at first, but as time goes by, it seems like a long time ago.  

[KristinCB]

I was diagnosed with DCIS on Monday, and am just assuming that it's stage O. I meet with a surgeon on Monday and I am scared. But I am also impressed with everyone's courage out there. This is not a journey that I wanted to take. I have so many questions about the types of cells these are and what grade. I know lots of women who've had mastectomy and are doing great. It seems like getting rid of this breast and getting it reconstructed might be best, especially if there's a chance of reoccurance...All of your advice and information is so helpful to me and I know I am not alone out here!!! I'm 42 with 2 kids and I'm a teacher and I just want to make the right decision and get through this nightmare that I can't believe I'm in. Lumpectomy vs. mastectomy? What a decision. I need to keep researching and finding as much out as possible.

[boninclyde]

It is a very tough choice. Read, read, read. Knowledge is powerful. A masectomy may be all you need and meds to keep the cancer at bay. If you have a lumpectomy you may also need radiation and meds to keep the cancer at bay. Be sure to make a list of question and it would be nice if you could take someone with you to help listen and also ask questions. Are they going to do the sentinal node biopsy or do you know? Masectomy was the right choice for me. Actually it was my only choice because of the widespread area of calcifications. I am 42 and was originally diagnosed with widespread multifocal DCIS. When I had my masectomy they found a small invasion 0.09mm and without the masectomy they would not have found it. No lymph node involvement. Grade 3, ER+, PR+ and HER2-. Onco score 20 1/2. No reconstruction. I am now on tamoxifen. Please keep us posted. I wish you well.

[boninclyde]

Once you have a treatment plan to fight this it will get somewhat less scary. breastcancer.org is a great site for info and questions to ask. The discussion board there is also a nice place to chat with other women that have been through the same thing. Hope this helps.

[KristinCB]

I have a decision and it's going to be a mastectomy of my right breast followed by immediate reconstructive. I am mourning the loss of this breast, even though it's full of cancer. I'm a 36D and these have been part of me for 42 years. I know I have a great plastic surgeon and I'll know more when I meet with him on March 6th....then we set the date for surgery. I am scared, but have a plan now. Now I need to know when surgery's going to happen. Any more advice before surgery? I hope they give me good pain meds in the hospital! How long is recovery? So many questions....

[boninclyde]

I wish I knew your complete results. I had my masectomy on Friday August 25,2006 and was home on Saturday doing laundry and washing dishes. Three little girls at home and no other family but my girls were great. Others don't have it quite that easy but still not to bad from what I have read. The drains are the worst part of it all. They stay in for like 8-14 days. It varies. They will give you just about whatever you want for pain but usually morphine. I had demeral with phenergan but used only one dose through IV that I really did not need. They cut most of the nerve endings so not much/any feeling left in that breast. I would make sure they are doing a sentinal node biopsy during the masectomy to make sure it has not spread to the lymph nodes. That will involve injecting some dye around the areola before surgery. Knowing your ER, PR and HER2 status is very important also. Masectomy for just DCIS is a big step but understandable. Just make sure this is what you need. Also make sure you know all the details of the reconstruction. It involves several surgeries. You usually need to lift the other breast. You have to decide on saline or silicone. Sometimes reconstruction make not work if you have to have radiation so be sure to go in dept with your plastic surgeon. Those implants have to be replaced every 7 or so years. The very most important part is a seond opinion. I got a second opinion at every step of each procedure. Your insurance company should pay for it also. Don't mean to overwhelm you. This is doable. Just trying to help. breastcancer.org and the discussion board there is a great place for more info. I wish you well. Please keep us posted.

[KristinCB]

I also have widespread DCIS, high grade, with other areas of calcification. I'm having a sentinal node biopsy during the surgery, so after that they can let me know if it's in the lymph nodes, which I hope it isn't. I haven't gotten a 2nd opinion because I know my surgeon's really great. I am a teacher with a limited number of sick days, so I really can't take too many days off before this surgery because I don't know how long I'll have to be out, and I have to save the sick days for recovery, however long it'll be...I can't live with the anxiety of the cancer possibly coming back in the future if I were to have chosen lumpectomy. I'm way too anxiety prone. I know I'll probably go down a cup size and will possibly get a reduction/lift on the left breast too (talked about that with my surgeon already). I know the implants can present problems as well, but I'll have to live with that. Better alive for my son and daughter than dead is how I'm looking at it. Do you work?

[boninclyde]

Sounds like you are ready to do this and seems like you've done your homework (lol). Recovery should not be to bad (to long). Are they talking about any treatments after your surgery or will they have to wait and see what they find during surgery? I do and don't work. I don't hold public employment. I take 3 girls to schools in the mornings to 3 different schools starting at 7:00 and finish up at 9:00. Same thing for the evening route 2:00 to 4:30. I volunteer at their schools quite often, tutoring (reading and math) and have lunch buddies and all the holiday parties. Pretty tired come nightfall. My job is pretty tough. Again, I wish you all the best. You will do well. Oh wanted to ask what state are you located in?

[KristinCB]

I had a nightmare day today! I had a call from the Piper Breast Center in Minneapolis (which is where I live, in a western suburb called Minnetonka)) and they had gotten my left breast mammogram from the breast center out here and they said they saw something "suspicious" and could I come in at 10:30? It was 9:15am and my students were just arriving, and we're having an intense blizzard today/tonight. I scheduled it for Monday, but called back at 10:30 and they had a 1:30 today, so I got a substitute teacher arranged, got things arranged and drove to Minneapolis in the blizzard. Had a mammogram & ultrasound done and it was a cyst, so nothing to worry about. Thank God! My breast center out here had only sent the right breast films last week, which has the DCIS. I was fully prepared to find more cancer in the left and have a bilateral mastectomy, which I don't have to. You're busy with your 3 kids and that IS your job! My kids 7 and almost 10, and I teach 4th graders. But the students are great and I have a HUGE support network at my school with teachers, staff, parents, etc. They've been great and bringing food and asking what they can do to help. I think I'll really need it after surgery. I'm not looking forward to the drains, as people say that's the worst. And once I meet with my plastic surgeon on Tuesday, I'll know what route I'm taking with recon. But I think I need to do what's going to be the shortest recovery, and I think that's going to be implants.....You sound like you're doing well. Thanks for the responses. It really helps to know I'm not alone!

[boninclyde]

Are they going to asperate the cyst in the left breast to make sure it is only a cyst? They normally drain them. This is such a tough thing to go through.  I am so sorry you had a bad day. I am doing pretty good physically but emotionally sometimes I fall to pieces. You seem so brave. You will get through this and you will be fine. Be sure before meeting your plastic surgeon you read about silicone Vs saline. I do hope you will visit us at breastcancer.org the discussion board to talk about many listed things. Reconstruction also. Do your kids know? Does breast cancer run in your family? Don't mean to be nosey just curious. I will be thinking about you through your journey.

[KristinCB]

I've read everything on breastcancer.org and will find out about what's best--silicone vs. saline...Breast cancer does not run in my family, so everyone's in shock!But I have 4 teachers in my building that've all had mastectomies and are doing GREAT! One just had a bilateral with recon and is about ready for her permanent implants. My own kids know about everything, as I'm quite open and talk about it all. They were in the car when I got my diagnosis on Feb. 19th and it wasn't pretty at all. I also wrote a letter to my students' parents and have gotten great support from everyone. I am trying to have a positive attitude about this, but I get really emotional sometimes and I know that's normal. I'll keep you posted and will know much more after I meet with my plastic surgeon on Tuesday. I think we're going to have a snow day tomorrow, as we've had about a foot of snow and it's still coming down! Where do you live? Have a good night. I need to go write in my journal now. Thanks for chatting.

[boninclyde]

I live in North Carolina. Good luck tomorrow with the plastic surgeon.

[boninclyde]

Just wondering how you are doing?

[KristinCB]

Hi. Sorry I haven't been back...I LOVED my ps and I am starting to feel good about my decision. I am having a right breast mastectomy with immediate recon., expander implant. Don't know yet about silicone vs. saline when the permanent's put in...but I have time to think about that. My surgery's April 9th, and I will teach for 13 more days and then head to San Diego for a week for my spring break. I get back the 5th and will be ready for surgery on the 9th. So that's my plan. I've talked to so many people that've been through this and that's giving me strength. I am getting into the most positive mind frame that I can, trying to do lots of meditation and relaxation. Teaching helps, as it keeps me busy and keeps my mind off it. How are you?