Lumpectomy verses double mastectomy w/ rebuilding

TB

I am a 33 year old mother of 2 small children who still need there mom. I do work full time and have a husband that is a self-employed farmer who works alot of strange hours. I just finished my chemo and now have to decide what surgery is the best for me. My doctors are letting me decide if I want the lumpectomy or double mastectomy. There is no breast cancer in my family and I have had done the BRCA test and it came back NEGATIVE. I have no one to talk to that is near my age that is making/or have made either of these decisions.

1. Do you regret having the lumpectomy verses the double mastectomy? The recover time is a big difference. The year or more of looking at yourself and not feeling normal could be big deal.
2. Has anyone regretted do a double mastectomy and rebuilding them?
3. Has your breast cancer returned after doing the lumpectomy?

I am swaying for doing the double mastectomy and then rebuilding them. The doctors told me that I have a 10% chance of cancer returning if I only do the lumpectomy. If I do the double mastectomy they said the chances of cancer returning would decrease to 3%. I am so young that the decrease by 7% seems alot. Is that too drastic to think like that? I have 4 more days to make my decision and was hoping someone could help me!!!

Thank you soooo much!

ohilly

lumpectomy vs. mastectomy
I can't speak for others, but I will tell you what influenced my decision to have a double mastectomy:

Although I 'only' had stage I breast cancer, I did not want to take the higher chance of having a risk of the local recurrence with the lumpectomy. After I got the initial mastectomy and went thru chemo, I was THEN tested for BRCA and came up positive for BRCA 1. I did not hesitate to have another, preventive mastectomy on the 'healthy' breast (so I had two mastectomies done at two different times). Each time I had immediate lat flap reconstruction.

I can honestly tell you I have no regrets about the mastectomies. I still worry about the cancer returning, but I would worry even more if I had had a lumpectomy. I am quite satisfied with the appearance of my breasts - they look normal, except for the fact that there is a big scar across.

Let me know if you have any other questions - I would be glad to help.

Best of luck in making your decision. Ohilly

zahalene

Two-timer
I had a mastectomy a month after turning 38 and another 3 months before turning 40. Both were cancerous. I went through chemo twice, radiation, tamoxifen. I had no reconstruction.
I am 60 now and have no regrets about my decisions. I am suggesting that although you are stressing over the decisions you are facing right now (and understandably so), in time you will come to accept the fact that you did what you could with the information you had at the time and that you could not expect any more of yourself. You are not going to 'anguish' over your decision, no matter what it is, and no matter what the future holds. You are going to give yourself permission to embrace your future and live it to the fullest, whatever comes.
This is one of the lessons breast cancer (and so many other crises of life) teaches us. One of our members here calls herself 'itiswhatitis'...which I think is a very wise attitude to take into and out the other side of this process. God bless.

mgm42

Lumpectomy vs. Mastecomy
TB, this was the right place to come to talk to others who have been or are in the same boat. You have already met two of the many wonderful people I've encountered on this website - Ohilly and Zahelene. They both speak from knowledge and personal experience. As for the 7% decline in chance for recurrence - that statistic is HUGE!

I opted for a lumpectomy and was told that, statistically in my case, a lumpectomy with radiation and mastectomy were about equal as far as recurrence is concerned. I was comfortable with my decision. I don't have any regrets and when I go to bed at night, I don't worry about living with my decision. But, for each of us, this was a personal decision based upon what the information our doctors gave us. So, as much as we would all like to "tell" you what to do, we can't. Only you can do that.

Good luck with your decision. Once its made, you will feel a lot better. Stay in touch. Hugs, Marilynn

mmontero38

Lumpectomy vs Mastectomy
Welcome TB: Sorry to have to welcome you to this site because it means you are also fighting the beast. You have come to the right place, you will meet an excellent group of women and men that have gone through exactly what you are going through. I was dx with invasive ductal carcinoma. Because the drs were not sure how invasive it was at the time I opted for a mastectomy. Luckily, I did not need radiation because my lymph nodes were clean, but I did go through 8 rounds of chemo, so I did my reconstruction 8 months after my diagnosis. I had the BRAC testing and it came back negative. I personally chose to have the mastectomy for my own peace of mind, but you ultimately have to make that decision. You can look into having the reconstruction done at the same time as the mastectomy if you so choose. Take your time and go to the plastic surgeon before you decide. Your surgeon might have someone he works with closely so ask him/her. Good luck with everything and please keep us posted. Hugs and prayers, Lili

Eil4186

Lump as good as mast
I had stage 1 invasive breast cancer with a small tumor. I was told that lumpectomy w/radiation was as good as mastectomy in terms of recurrence risk. It does not make sense to remove perfectly healthy breast tissue along with the tumor. This makes sense. I had a lumpectomy, chemo, and high dose radiation to the tumor bed only. I feel perfectly comfortable with my decision and am very grateful that my surgeon took the time to educate me on the options as my initial reaction to having cancer was to remove my breasts out of fear.

But, I know that for me, losing my breast/s would have been emotionally devastating. It has been over 2 years since my diagnosis and I am doing fine and there are thousands of women out there who have had lumpectomies and are well also.

Obviously everyone must do what is right for them. Think about your decision carefully,but remember that lumpectomy is just as good as long as the surgeon removes the tumor with clear margins. Good luck, Eileen

TB

Update:
Thank you for all your responses. It does help. I live in a small community with no one near my age that has had, or is going through this. They have given me a 10% chance that the cancer would return if I do a lumpectomy and at 3% chance if I do the bilateral mastectomy and rebuild with implants. 7% means alot when I am young and still have small kids at home. I do live 50-60 miles from my chemo or radiation town. I live 150 miles from the city with the plastic surgeon and breast surgeon. So either way I decide will require alot of driving.

Did anyone watch Oprah today? She had an entire show about dealing with breast cancer. It so helps when someone is going through the same things you are and to know feeling the way you do is not wrong. She was supposed to have more on here website today.

Thanks again for all your responces!!! It does help!!

phillis313

TB said:

Update:
Thank you for all your responses. It does help. I live in a small community with no one near my age that has had, or is going through this. They have given me a 10% chance that the cancer would return if I do a lumpectomy and at 3% chance if I do the bilateral mastectomy and rebuild with implants. 7% means alot when I am young and still have small kids at home. I do live 50-60 miles from my chemo or radiation town. I live 150 miles from the city with the plastic surgeon and breast surgeon. So either way I decide will require alot of driving.

Did anyone watch Oprah today? She had an entire show about dealing with breast cancer. It so helps when someone is going through the same things you are and to know feeling the way you do is not wrong. She was supposed to have more on here website today.

Thanks again for all your responces!!! It does help!!

lumpectomy vs. mastectomy
I, too, appreciate reading all the comments. I need to come to a decision as to which surgery to have as well. It's so overwhelming. I wish it could be more cut and dry. I'm having my bathrooms redone currently and I'm having trouble picking out tile grout! Simple decisions drive me nuts...you can imagine what this one is doing to me! I'm told I have DCIS and that either surgery will have the same outcome. I'm guessing it makes sense to try the lumpectomy first followed by radiation, I guess we could always go back for more if necessary. I don't want to make a decision out of fear, but based on facts. Is a 4% variance worth the major surgery and reconstruction, etc.? I'm 46 with two teenagers.

cabbott

phillis313 said:

lumpectomy vs. mastectomy
I, too, appreciate reading all the comments. I need to come to a decision as to which surgery to have as well. It's so overwhelming. I wish it could be more cut and dry. I'm having my bathrooms redone currently and I'm having trouble picking out tile grout! Simple decisions drive me nuts...you can imagine what this one is doing to me! I'm told I have DCIS and that either surgery will have the same outcome. I'm guessing it makes sense to try the lumpectomy first followed by radiation, I guess we could always go back for more if necessary. I don't want to make a decision out of fear, but based on facts. Is a 4% variance worth the major surgery and reconstruction, etc.? I'm 46 with two teenagers.

Tough Decisions
When I have a tough decision to make, I try something I read in a book(I think it was called Karen, but I'm not sure) a long time ago. The girl, who was mostly in a wheelchair, was trying to decide if she wanted to do the therapy that would help her walk more or skip it and stay in the wheelchair more. She took a piece of paper and drew a line down the middle. Her arguments for therapy went on one side and her arguments against it went on the other. Her mom urged her to take the long view and think about how she would feel down the road. This is another one of those tough decisions that only you can make. There is no absolute right or wrong here. If it helps, realize you can't make a wrong decision. You just have to make a decision that fits you based on the information you have now. You have to decide what will help you sleep at night the best. You may need a second opinion with a different breast oncologist to see if lumpectomy plus radiation and tamoxifen(or another treatment) might be equal to mastectomy on both sides. If you are finished having children, would an oopherectomy (removing the ovaries) plus an aromatase inhibitor plus lumpectomy and radiation be as successful as the other options? This is a question for your oncologist. An ooperectomy will give you hot flashes galore and you may need fosamax for your bones, but it may result in keeping your breasts. You are very young though, and going into menapause at your age is pretty drastic. There are medically reversibly options that can put you into menapause for a month at a time. That has been paired with aromatase inhibitors before too for women that need to reduce estrogen but don't want permanent menapause. It takes a shot at the doctors once a month. I know you are on the edge with all the decisions to make, but there are options here and even your current doctors may not be aware of all of them. You are not the first person to notice the time concern with radiation. Some women opt for a novel radiation treatment that takes about a week. The surgeon implants something with radiation that "spot treats" the area in just a couple of days. Then he removes it and you are finished. That takes a big city specialist and a short hospital stay, but the results are similar and work for "lumps" of cancer. My dad who lives in Delaware had surgery for cancer there, and then worked with a radiologist in Florida where he winters. Could you move in with a relative that lives near a clinic for the ten weeks you need radiation? It does not even have to be in the same state obviously but then you could do the standard stuff. I had cancer in at least two spots in my right breast. Two lumpectomies were not feasible, so I had a simple mastectomy, no reconstruction (my choice, insurance covered all the options). Recovery time was fairly fast. I missed less than two weeks of work, though I couldn't lift anything heavier than a clipboard when I went back. It helped that I was active and that they gave me an exercise program-stretches of various kinds-to rehabilitate the chest muscles after surgery. You don't want to do too much but doing nothing leads to problems too. Reconstruction can make you fit a bra and a bathing suit easier, but be aware that even if they look right, they don't have the same nerve sensitivity. Neither does a mastectomy though sometimes I'm amazed at how sensitive certain spots are. Implants often need to be redone every so many years. Tissue transplants don't always take (I think about a 10% failure rate is common but you can ask your surgeon what his particular success rate is) and they are major surgery with the possibility of serious complications. On the other hand, tissue transplants shrink and grow with you when you change weight and they look the most normal. Women that have had the surgery successfully seem extremely satisfied with them. When I was first diagnosed, the breast cancer rate was one out of ten women. Right now I believe it is one out of eight. The Susan Love website has pictures and stories of women that have had various surgical options. Looking at the pictures (send the kids out of the room for this one!) can give you more information and so can reading their decisions. Once you get the information you need, you will make the decision that is right for you. There is no wrong decision here--just the one that is best for you.

C.Abbott