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Mastectomy or Lumpectomy
unklezwife posted:
The core needle biopsy results are out.

I have Invasive Ductal Carcinoma. Stage is IIA (lymph nodes are not swollen visually and in MRI). Lump is 2.7 cm. It is in my left breast in the upper right quadrant (closer to arm pit). I am small breasted (size A/. The effected breast is the senior team member Tumor is High Grade. ER- PR- and HER2- => Hormone therapy is ruled out and so is herceptin. Blood has been sent for BRCA gene association which is highly likely given age (37 years), high grade etc.

I know I have to have Chemo. I know I have to have Surgery. I may have to have Radiation.

The surgeon has given me the choice of whether to get Lumpectomy or Mastectomy and I want to get this groups opinions on the pros/cons before that decision.

Here are the benefits of Mastectomy the way I see it:

1. It will give me added peace of mind (given triple negative, high grade and possible BRCA association, local recurrence will be less likely with so much more tissue removed). 2. I may be able to avoid the pain of going thru' radiation and its side effects. 3. Better long term cosmetic results. 4. Possible to get immediate reconstruction. Even if not, a straight line scar will probably look better than a lop sided small breast with a missing 1/4 or 1/3 mass. 5. Less worry about clear margins.

Here are the benefits of Lumpectomy the way I see it:

1. Better from an emotional perspective to conserve my own breast. 2. It is the "standard of care" these days. 3. More sensation in the breast post op. 4. Less invasive procedure.; speedier recovery What do you all think of this list?

Rachael67 responded:
I remember when I entered the breast cancer arena and began to do my homework...If I choose "this," "that" can happen. If, on the other hand, I go in this direction, that is the possible result! I felt totally incapable of making a choice! Had I not had choices, I would be cursing the lack of them...Given I had several, I cursed that as well!

My advice at this juncture is to get a 2nd and 3rd opinion! It is too permanent a decision to make and have doubts later. Now is the time to seek professional well as to get the input of members here!

I'm afraid I just don't have the perspective to appreciate what I might do (other than seek more info)! Wish I could help more. But please know you will be in my heart as you ponder which path to take!

blessings. Rachael
Jean0526 responded:
Good Morning,

I had a mastectomy five years ago, for most of the reasons you have listed. My cancer was stage I, microinvasive, ER-PR negative, her-positive. Pain was very tolerable, had two drains for several days. Most discomfort was the lymph nodes, 26, being removed. They were negative. I did not have reconstruction, scar is barely visible now. Of course I am lopsided. Prothesis have become lighter and more comfortable. Because of the small size of the tumor I did not need chemo and have been fine. Regular checkups, etc.

You are much younger than me, which will be a big part of your decision, but for me it was definitely the right decision. You will be hearing from alot of the ladies on this board with reconstrucion who are pleased with that decision, too. And as you said lumpectomy is the standard procedure. In my mind I felt safer with the mastectomy. Hope we can help you to decide what is best for you.

DiKay1024 responded:
Your lists show you have done your homework--good!! Decisions are hard, I hate making them. I'm afraid I went along with my docs recommendation for lumpectomy without much thought, but he seemed confident, and it's 5 years later and I don't reget it. The statistical outcome for me was the same for either procedure, but I was HR + and took 5 years of Arimidex. If your genetic testing is + that may make your decision clearer for mastectomy. As Rachel said a second opinion never hurts.

My tumor was 2 x 1 1/2 x 1 centimeters, and after removing enough tissue for clear margins I do look rather lopsided without a bra--at age 61 I have one long and skinny and the other short and fat!! But with a bra I look totally normal. I'm sure that depends on the amount of tissue removed and the location--mine was in the lower area of the breast.

Good luck with your decision. Come back and let us know how you are doing.

Blessings, Di
564deb responded:
Hello dear friend. I am so sorry to hear that you are faced with this diagnosis and with all the decisions that go along with it. I am 57 years old, diagnosed last December, Stage II Invasive Ductal Carcinoma, Triple Negative, tumor was believed to be 2-2 1/2 cm, but turned out more like 3-3 1/2. My tumor turned out to be a rare but somewhat less aggressive Papillary Carcinoma (thank you God). I had a lumpectomy (my surgeon's suggestion) in January with clear sentinal nodes and clear margins. The lumpectomy was a very easy procedure for me to tolerate. Very little pain and the removal of my tumor (which was on the bottom side of my breast) surprisingly did not leave any divits or sign of ever being there other than the scars. I completed chemo (A/C) in February and March. I have not had genetic testing done yet, but plan to in the near future. My next step in treatment was suppose to be 6 weeks of radiation. In lieu of this and after much soul searching, I chose to have a bilateral mastectomy with immediate reconstruction. This was a personal decision that I made and I do not regret it. After chemo, I did not want another "foreign" thing like radiation coming at me and to be honest with you, I no longer had any emotional attachment to what I felt like were "ticking time bombs" attached to my chest. My bilateral surgery was suppose to take place in May, but because of some complications after chemo and my daughter's wedding, I just had the surgery on June 25th. I must admit it was a harder surgery than the lumpectomy. I spent 3 nights in the hospital and was sent home with 4 very large and cumbersome drains that remained in for 12 days. I had expanders put in the day of surgery and the plastic surgeon started the expansion process the day the drains came out. I get 60-80 cc every week which causes me very little if any discomfort. I am hoping to get my permanent silicone implants by boobies under the tree for me!! I am happy with my decision. I was very large busted before and I do not miss the "big girls" one bit. Like you, I did not like the ides of being lopsided or things not matching up. It is very liberating for me to go bra-less again after all these years and never having to face another mammogram pleases me a lot! Besides that, I am getting new breasts and my insurance is paying for it:) In short, I am trying to make lemonade out of lemons. If you really aren't sure, you may want to do as I did, have the lumpectomy and give yourself time to think about it. As my surgeon explained to me, you can always remove them, but you can't put them back. Another suggestion which you probably already have done is to meet with and discuss your options with a plastic surgeon. This may help your decision making and if you choose mastectomy with reconstruction, it is easier to have the plastic surgeon start this process the day of surgery.

This is a hard diagnosis for sure. One no woman wants to hear. However, I have met some wonderfully amazing survivors not only on this website, but also at wig shops, ball games, doctor's offices, etc. You will be amazed by the compassion and strength these women will have to offer you. Six months ago I was in the midst of treatment, bald, and to be honest somewhat of an emotional train-wreck. Today, I have a new crop of very short, very gray, very curly hair, the start of some new perky boobs, and a new attitude about life.

Please feel free to look under my profile and email me if you would like to talk further or ask me any questions. You ARE going to get through this and as my friend Tracie says, you are gonna be "FIERCE"!!

God Bless, Deb
Annaviktoria responded:
I remember how difficult it was for me to make the decision you are facing now. Last November I had bilateral mastectomy done and I do not have regrets. My surgeon suggested lumpectomy, as you know it is a "standard of care" for BC these days. My tumor wasn't big- 1.5cm only and no lymph nodes involved, but I felt that the lumpectomy would not be the choice for me. Later on the pathology report showed several areas of Lobular Carcinoma in Situ in my other breast. So, it turned out that I did the right thing. Also, I was tested for BRCA 1 and BRCA 2 and they both came negative. My tumor was highly positive for ER and PR and HER2 negative. I am taking Tamoxifen now. Hope this would be in some help for you to make your own decision. I will be thinking of you. God bless. Nataliya.
Nico1e responded:

I just wanted to introduce myself as I too am 37. I was diagnosed with breast cancer at age 36 (Stage 3 invasive ductal carcinioma, ER-, PR-, HER2+, grade 3). My tumor was very large (9cm - basically my whole breast) and not palpable, so I had a mastectomy last fall + chemo over the winter, Herceptin ongoing, and will have a 2nd mastectomy (with reconstruction) this fall. I didn't have the choice to have a lumpectomy so can't really offer advice there.... but I can tell you that as a small breasted woman (34B) living with just one breast over the past year, people have been amazed at how well I can hide it - including in the right kind of swimsuits. I haven't needed a prosthetic (a couple of kleenex stuffed into a shaped bra will do... and an appropriate swimsuit with a tiny tank top overtop, you can't tell a thing...) That said, I'm looking forward to having reconstruction and somewhat normal curves again. (Though I will miss the sensation the remaining breast allows!)

Your list is very logical. Probably worth asking your doctor about the specific risk of recurrence with both options. Also worth considering, do you have to travel for radiation, or is it offered where you live? (Though presumably any short-term inconvenience is more than balanced by the greater likelihood that you'll still be here living a normal life in the long term!) Will you have lymph nodes removed to confirm they are clear? Sometimes they don't show up on scans. The pathology on the lymph nodes may also guide your decision.

If your choice to have a lumpectomy or a mastectomy will affect whether or not you receive radiation, you may want to ask your doctor about the long-term effects of radiation on your lungs & other tissues in that area of your body. I had radiation to my chest as a teenager (to combat Hodgkin's Disease) and have recently been informed that as a result, my risk of breast cancer is about 3x-8x higher than the average woman's. (That said, there was also enough family history that I recently had genetic testing done. Won't have results for a while yet.) Some chemo also increases your risks of future cancers - particularly leukemia I'm told. Sorry if this is difficult news to hear, but I think it's best to get all the information you can from your docs before you make difficult decisions. Sometimes they hold back information about long-term effects because they want you to focus on the more immediate concerns.

If you have a partner it may be worth getting his input too, if you feel it won't complicate your decision. My hubby was all "get rid of those things!," and it was such a relief to hear.

As soon as you're past these most important decisions about your primary treatment, I would highly recommend doing some research into the non-medical things you can do to reduce your risk of a recurrence (through exercise, nutrition, meditation/visualization, joining a support group, etc.). It's amazing how a sense of control, of helping yourself, can contribute to your outlook and impact your health.

Best of luck with your difficult decisions. You'll find support no matter what you decide. I'm here if you want to chat sometime... let me know.
IWillDoThis responded:
Hi Deb. I just read your posting. I am new to BC. I have an Invasive ductal carcinoma in my left breast. I had to make that same decision and I made it yesterday. I am going with a mastectomy w/reconstruction. I feel as you do that this is the best direction for me. I am 61 years old and in 20 years, I may be the "Koolest Chick in the Nursing Home." Kidding aside, my daughter suggested that a persons self-esteem can be another factor in this decision. I'm thinking, why not let something positive come out of this battle we all face. I will also have the plastic surgeon start the expansion process on the day of my surgery, which I don't have yet. I'm thinking in about 2 weeks. I feel good about my decision and am ready to fight this disease "Head On". Good Luck with your final surgery and I will keep you in my prayers. What a Christmas you will have. Prayers and Love, Bonnie
564deb responded:
Bonnie...yes, YouWillDoThis!! Best of luck with your surgery and your reconstruction. Things are still going well for me. I am at 690cc on each side now and will meet with my plastic surgeon on Tuesday to see if this is enough. I am done with the large breasts, just want a nice new set of smaller ones. The reconstruction process to date has not been bad at all. I typically get a "fill up", take a few Aleve, and go shopping for the rest of the afternoon. Great therapy:)!! The hardest part is living for a few weeks with the drains and getting used to the hard feel of the expanders. I think you will do fine. Feel free to contact me if you have any questions. We still have a lot of living to do....might as well feel good about ourselves I figure.

God Bless, Deb
DisneyGirl1956 responded:
First time here so not sure this will go to all or just one person. I am in the middle of my Chemo. Diagnosed in June Stage 3 Grade 3 Triple Negative, ductal carcinoma with underarm node involvement and also mild superclavical involvement. My Tumor is small 2 CM in my left breast at 2 o'clock, discovered in a yearly Mammo, well 15 months in between, always had perfect Mammos since 40. Before my PET Scan that revealed the collarbone area inflamed, my choice was to have a lumpectomy. My Oncologist and medical team decided that Chemo first was better for me though, then surgery, then radiation. I have 2 more rounds of TAC to go, with little side effects, mostly foggy brain. I work at a Major Theme Park in Anaheim Ca. (Mickey's my boss) so I opted out of work during Chemo to stay away from 10's of thousands of people from all over the world. I am bored to tears at time at home, but I feel it's all for the best. I am still deciding on whether to have a lumpectomy or a mastectomy. My team of Doctor's believe in breast conservation when the odds are the same between Mast or Lump. I am all about getting on with life and having the simplest procedure too. Having the Chemo first is a bit unusual so I ask for some gentle advise here. My small tumor my Oncologist told me after round 3 felt better and the node under my arm that was a hard lump early June is pretty much gone now. My collarbone area that just became inflamed the day I signed the surgery papers has also become more normal. I am a 38DD and my breast surgeon said I would not notice much gone because of my size. I am not SURE a lumpectomy will still be offered but if the tumor is gone and the nodes are clear of Cancer, do I feel comfortable with a lumpectomy?? I am 53 years old, perfect health until this. Nice to meet you all, hope you have some advise for me. I trust my Doctor's. My Oncologist is more worried about the triple neg going to an organ later on vs. the breast again. He said we are about a year out from a breakthrough in trip neg after treatment. It is currently in Phase 3 testing and is showing promise. Thanks to all who read this and God bless!
Rachael67 responded:
So sorry to have to welcome you to the club...But I can assure you that you will find caring folks here who will do all they can, and will walk each step of your journey beside you.

I think I might be as hesitant as you are to settle for one opinion. You have many challenges, and want to make sure that you chose the best decision for you...Breast conservation isn't the only thing to be considered, and it is apparent that you feel the same way! Life is what counts!

I would get a second and third opinion were I in your place. I'm kinda uncomfortable at how willingly the doctor seems to dismiss a mastectomy (and I promise you I am usually quite conservative when it comes to treatments.) I just think you need more input at this point. It may well be that a lumpectomy is the best for you, but I think you need to do a little more investigation into the issues before deciding.

Please know you will be very much in my thoughts! Let us know how you are doing. Okay?

Blessings. Rachael
sams_mom2 responded:
First, I'm sorry you have to go through all of this.

I think you've summed it up well. Ask if your surgeon will do nipple sparing mastectomy. That's one thing I lost with the mastectomy that some women got to keep.

For me, I didn't want multiple surgeries to get clean margins and wanted to avoid radation. And while there is not mortality benefit, it made me feel more confident that there would not be a recurrence in that breast. Also, the surgeon thought that cosmetically the lumpectomy wouldn't look all that good anyway.

It's a hard and very personal decision. I wish you the best.

DisneyGirl1956 responded:
Thank you! One day I think I want a lumpectomy, but with the Triple Negative hanging over me I now think I should have a double mastectomy. How do they save a nipple if they take all the tissue out?
Jinahlee responded:

I have almost the same diagnosis with you..! Could I ask you what you chose in the end? Lumpectomy and rads or mastectomy?

I was diagnosed in July 2012. Had lumpectomy. 8 rounds chemo. Ended on 11 Jan. Now trying to decided between rads or bilateral mastectomy, as I found out that I have a BRCA1 UV.

TNBC. 2 cm. IDC. no node involvement. grade 3. Age 37. tumor close to armpit and chest wall.

Thanks a lot, Jinah
judyfams replied to Jinahlee's response:
Please know that having a mastectomy does not rule out your having to have radiation.
If the tumor is close to the chest wall you may have to have radiation in addition to the mastectomy.
I'm only telling you this because some women think having a mastectomy means no radiation, which is not always the case. So discuss this with your doctor.
Very good luck to you.

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