Surgery-trying to decide
hi all,
I'm trying to decide between lumpectomy and mastectomy. It's killing me! I'd rather have lumpectomy, but I read that HER2+ makes us high risk for recurrence, and I do NOT want recurrence.
Does anyone have stories they'd like to share on what decision and why? I know it's personal and I know I have to make my own choice, but I'm having a really hard time. My husband says "go with your gut" but my gut changes every twenty minutes. Part of me says, have a lumpectomy, the risk isn't that much higher and you can avoid major surgery and multiple reconstruction surgeries. There are even studies that suggest you do better with lumpectomy than mastectomy. Then part of me says, you are high risk just have a mastectomy...if it comes back you'll never forgive yourself.
Help! I'm driving myself insane.
Comments
-
(((Hugs)))
-
I can only speak for myself. I was high risk (mother and younger sister both passed of this disease, not brca pos). My original doctor suggested lumpectomy and used research to convince me that I was over-reacting to consider bmx..I went for another opinion, and I told her I was leaning toward mastectomy but didn't want multiple surgeries. She connected me with a plastic surgeon who does one-step....I had bmx, woke up with smaller boobs, very little pain or discomfort, and later pathology revealed another site that was not caught in imaging or biopsied. That's when the Her2 was found. Feeling grateful for the choice I made.
-
I was told that while HER2+ is more aggressive, it also has better outcomes because of Herceptin. I decided not to do MX unless it was the only option. Besides the obvious, I know so many women who have had awful problems with reconstruction.
-
Colleen- have you had genetic testing done? An MRI? The results of both of those would likely impact your decision. I am always looking down the road vs what i prefer right now. With the BC diagnosis we've already found ourselves in the short end of the stats. I wanted to do everything i could now to reduce risk of having to deal with this again down the road (especially since we don't know what stage we will catch it at down the road if it recurs). I opted for bmx with immediate DIEP flap recon. I am amazed by what I see in the mirror every morning. If I stripped in front of you, you'd ask if I was sure I had anything done. If you reached out and felt them, you’d ask the same question.I would do it again in a heartbeat.
-
Thanks for responding ladies. I do not have the BRCA mutation. My MRI at the beginning was clean except for the known tumor and one other spot that was inconclusive. We are redoing the MRI Saturday to see about that inconclusive spot. If we can’t definitely tell it isnt cancer, then I will do mastectomy. But if it’s not, then I’m not sure what to do. I don’t think I’m a candidate for immediate reconstruction because it was in my lymph nodes and I’ll need radiation.
-
Do your doctors recommend one over the other for you? Was the lymph node confirmed by biopsy? Have you met with a PS to get their opinion?
It's a horrible decision to make. Some people seem to know right away while others really struggle with it. I was a struggler! I had a constant thread running in my mind - all of the pros and cons of each.
In the end - I chose BMX with DTI. No cancer was found at all after the chemo, even though there had been some concern about the lymph node (biopsied negative - considered discordant). One of the reasons for my choice was to possibly avoid radiation and I was able to.
I did have some regrets initially, but I think that I would have with either option. Eventually, you just have to decide with what you know, and feel, and try not to look back. Whichever choice you make - you'll have done your homework. Remind yourself of the positives for your surgery.
-
my onc reccomended lumpectomy. My surgeon won’t say but she did say I was a good candidate for lumpectomy. I’m thinking if, after my MRI, they can tell me everything looks great, then I will go with that. If anything looks uncertain I’ll do mastectomy. I couldn’t handle the uncertainty.
At least, that’s what I think today lol. Thanks for responding. If everyone could keep me in your thoughts and prayers that the MRI makes the decision easy and that I make the right choice, I would greatly appreciate it!
-
When they first diagnosed me on the right side I had a non-aggresive mass with pre-cancerous calcifications. I wouldn't need chemo and a lumpectomy would be a good choice. But my breast surgeon suggested doing an MRI to make sure we weren't missing anything. It revealed an aggressive mass on the left side with a group of pre-cancerous nodules. I would need chemo and possibly radiation. At that point I decided, with everything I had going on, I would go with the BMX with reconstruction. And no, I do not have the BRCA mutation. My surgeon was quite surprised I didn't. She said she would have bet that I did. I am very happy with my decision and I have NO regrets.I had 3 surgeries to complete my reconstruction. I had the tissue expanders placed at the time of my BMX, the exchange surgery & then fat grafting.
Good luck with your decision. It's a personal choice we all must make. You'll know in the end which is the right one for you. Hugs to you.
-
I chose a lumpectomy. Unfortunately, my margins did not come back clear and I am now facing more decisions. Because more surgery would leave my breast pretty disfigured, they have recommended mastectomy. About 25% of lumpectomies require more surgery. I was pitched the Savi Scout (a device that uses radio waves to determine the margins of the tumor) as a way to reduce that chance to 5%. I guess I'm the 5%. So, now I can either just trust the coming chemo and radiation to take care of any cancer cells floating around out there or have the mastectomy. If I do the mastectomy, I will do a double with no reconstruction.
I did not realize how attached I really was to my breasts until they were in danger of being removed. Even through all of this, I still would have chosen lumpectomy first. The surgery was not bad at all. Very little pain for me. Recovery went well. I am scared to death of the mastectomy.
-
I couldn't decide either. Over and over, I read the main site here, and study results (not general google stuff) and grilled my surgeon about outcomes and data. I realized that if I had the lumpectomy and did not like the pathology, or even did not like my anxiety level, my insurance would pay for a mastectomy. I went with the lumpectomy plus rads, secretly considering the surgery a biopsy, and found I was happy with just that. Today I am very glad that I spared myself the risks and discomfort of one or two--couldn't decide that either--mastectomies plus DIEP. Yes, I could have a recurrence, but, five years later, I find I am more comfortable having had radiation than I would have been with only a mastectomy (or two!), but no rads to clean up any loose naughty cells.
I'd suggest grilling all your docs about outcomes with your particular diagnosis. They have access to test results that, if available to us, are usually pretty much dumbed down and often somewhat distorted.
-
Colleen, you didn't mention how old you are but you said you have a hard time handling uncertainty. If you are on the younger side of the spectrum and decide for lumpectomy you should be ready for frequent mammos and/or MRIs and possibly biopsies if there are existing benign conditions - for many years to come. Some find it destabilizing.
Speaking of radiation it can be done with implants in or expanders in or nothing in if you don't want reconstruction. There are many different options.
Good luck with your decision!
-
The science is pretty clear that outcomes are similar, so for me it was about deciding whether or not I could live with the anxiety of regular scans. I decided I could, and would like to avoid drastic surgery. I may discover that the anxiety is too much for me down the road, and if that turns out to be true, I'll opt for the mastectomy. The decisions is SO personal--good luck making it! (And if you do go with lumpectomy and rads, never think you "didn't do all you could" to survive. The science is clear that outcomes are similar. Both roads are brave choices for our future selves.)
-
I think your plan is a good one. Sometimes we just need something concrete to help make the decision.
I had an MRI in the beginning. A few areas were noted in the "good" breast - not concerning enough to warrant biopsy. The MRI after chemo showed most of those areas were gone (from chemo? from lack of hormones? just because?), but one remained. The recommendation was for repeat MRI in 6 months. That helped change my mind to BMX.
I hope you get good and reassuring results.
-
muska I am 38....that’s a very good point. Sometimes I think the constant scanning would actually be reassuring and sometimes I think it will stress me more. Ugh.
Ladies, I’m going for my MRI soon. I would so appreciate your thoughts and prayers. Won’t hear results until Monday but I am anxious just because I hate that stupid machine. But I hope and pray it gives me some answers.
I can’t thank you all enough for “sitting” with me through this awful decision process. <
-
I often see written that you can have a lumpectomy first and then later have a mastectomy, which you certainly can, but here is the caveat. Something that I think bears mentioning is that the mastectomy and reconstruction process - if one desires reconstruction - becomes more problematic if you have had radiation after a lumpectomy, and then decide on mastectomy down the line. Radiated skin doesn't respond well to stretching and the complication rate increases for previously radiated patients. I think this is an important consideration to factor in to your preliminary decision making between lumpectomy/mastectomy/bi-lateral mastectomy, as there can be the need for autologous reconstruction for radiated lumpectomy patients who then have mastectomy, and autologous surgery is a more complex surgery. This is not to dissuade you either way - just an important aspect of decision making. Wishing you the best - I know this is hard.
-
And another point to add to the mix - monitoring. We all know that having a MX does not guarantee no recurrence. While some may be relieved to avoid scans, others - like me - kind of hate the "all's well" unless you or your doctor feel something. Again - very individual and varies among providers.
-
SpecialK-that is one of the things that worries me because I’m pretty sure I’ll be having radiation either way. So I know reconstruction would be difficult! So many surgeries is daunting.
NotVeryBrave-that’s something I worry about! The thought of having mastectomy and then not being monitored actually scares me bc what if it came back in my chest wall or something and we didn’t find it until very progressed?
BUT-am I stupid to pick lumpectomy at 38? Am I asking for trouble being younger as I know my chances of a recurrence or second cancer get greater with age and I (hopefully) have many decades left to go?
-
colleen - why are you assuming you will have rads with mastectomy? Do you have a close chest wall or skin location, or positive nodes? In my experience with mastectomy, if you have reconstruction, periodic MRI, possible periodic PET as determined by your MO, and physical exam by BS, PS and MO are forms of monitoring. If you have sub-pectoral reconstruction with implants your skin is laid over the muscle - local recurrence is usually visible, even when quite small because the lump occurs between the muscle and the skin. Also, a conscientious surgeon would not offer you a surgical choice if they felt there was too much risk, hopefully, and if your MO feels lumpectomy is a viable choice in light of your clinical presentation I would hope the same. There are a number of ladies who post on the Triple Positive thread who also had lumpectomies. If you image well that is important and Tamoxifen for pre-menopausal women usually assists mammography by decreasing youthful breast density so monitoring after lumpectomy makes it a reasonable choice too.
-
ColleenS80, I had a lumpectomy but would have had a mastectomy if I had turned out to be BRCA positive or if the MRI would have found anything else than the one lump I had found myself.
"...the new study suggests that in a group of 112,000 women, those who had lumpectomy plus radiation therapy survived longer than those who underwent mastectomy."
from
https://www.health.harvard.edu/blog/for-early-brea...
This makes sense because the mastectomy is a bigger surgery and combined with all the other treatment could take a bigger toll and cancer could come back easier if your body feels weaker. Thats why I chose a lumpectomy, I didn't want to deal with a huge surgery on top of chemo and I wanted to feel as much like myself as possible.
Good luck to you, whatever you decide...
-
I think I’ll be having rads either way bc the cancer was in my lymph nodes. You are right that ( I assume) my surgeon wouldn’t give me the option if she felt strongly one way. Thanks for the added info! More to consider
-
In the interest of fair balance when posting quotes from studies, this quote is also from the article/study referenced by waytooanxious above.
“The results must be taken with a small grain of salt. This was not a randomized trial, the gold standard of medical research, in which women were randomly assigned to one treatment or the other. Instead, each woman and her doctor decided on the treatment strategy. It's possible that women who chose mastectomy were less healthy or at higher risk of having an aggressive type of cancer, and that's why women who chose lumpectomy plus radiation seemed to do better.
Lumpectomy plus radiation therapy isn't the best choice for all women with early-stage breast cancer. Reasons to opt for mastectomy include:
- A breast tumor that is between 4 and 5 centimeters in diameter. This is close to the upper size for an early-stage cancer.
- Being at high risk for developing complications from radiation or the inability to undergo radiation therapy
- A strong family history of breast cancer or presence of a known genetic mutation that significantly increases the risk of developing breast cancer again."
“These data provide confidence that BCT (lumpectomy + rads)remains an effective alternative to mastectomy for early stage disease regardless of age or HR status.“ -
Part of my reasoning for BMX was my cancer was fairly aggressive (appeared 4 months after normal mammo), my age (50 at diagnosis), and my family history of many types of cancers (although genetically negative for known mutations).
-
NotVeryBrave-only four months and you were already stage 2? That’s scary! Did you have a lump?
-
Yes. I found the lump. I had this weird discomfort and was trying to figure out what hurt.
At least fast growing cancer usually responds well to chemo. Chemo kicked its butt and I couldn't find the lump after the first round!
-
Lula73 Thanks for adding additional quotes. Yes a mastectomy makes sense in many situations too. It just didn't fit mine but BRCA positive or other genetic disposition, multiple lumps and a large lump or a very anxious temperament about future mammograms are all reasons to choose a mastectomy
-
NotVeryBrave so glad you found the lump and that chemo got rid of it for you. Wow, what a great result to a very scary situation
-
Hi Colleen, I'm not Her2+, but I'm just chiming in with my experience, since I had both a lumpectomy and a mastectomy. Unless the cancer forces us to do one thing or another, I truly believe that the "right" decision is unique for everyone.
I had a lumpectomy first. For me the recovery was fairly easy, and once my breast healed there was just a small faded scar. I still looked like myself, felt like myself, wore all my usual clothes, and felt attractive, comfortable, and "at home" in my body. After the mastectomy... well, all of that was much more challenging. The lumpectomy was easier for me, both physically and mentally.
I was able to start implant reconstruction after my mastectomy, despite having had previous radiation. Sometimes it's an option, but not always. I had no complications from that. However, it's true that prior radiation can complicate implant reconstruction, or make it impossible. Fortunately, autologous reconstruction does not have that issue.
Also - and I don't want to be a bummer - but just know that a mastectomy will not completely eliminate the need for screening, imaging, biopsies, etc. Recurrence - whether local or distant - is a fear that we all live with, regardless of what surgery we have. Many here have had a local recurrence after a mastectomy, including me. I only bring this up because while it is important to be proactive about risk reduction, especially when you are younger, be realistic about your own situation, and how much either surgery will benefit you. Be aware of what is motivating your surgery choice. Is it fear? When all the dust settles, what consequences are you really most comfortable living with? In the end, only you know what is right for you, and what makes the most sense for your situation. Best wishes in your decision.
-
NotVeryBrave, so glad you had a good outcome! Button, thanks so much for chiming in.
Tomorrow I go see my surgeon to find out the results from the MRI. Hoping and praying whatever it says makes my choice clear and easy to live with. Please send me all your good thoughts and prayers that whatever happens tomorrow, it brings me clarity and peace about what I need to do!
-
I was diagnosed w/ breast cancer 4 days ago. I'm BRCA pos. (can't remember but I think it's BRCA2). I was tested for the mutation decades ago because of the family history and have been seeing an oncologist regularly since. They've been watching me really closely - Breast MRIs alternating w/Mammogram every 6 mo. The thing they found is less than 1 cm in size. The oncologist is recommending bilateral mastectomy. I HATE the thought. It feels so stupid and so vain to take any sort of risk and not go for the most thorough option possible - But I'm a very large 62 yr old woman w/miserable self esteem and I think my breasts are actually the only part of me that's at all attractive. I think if they find the cancer looks to be pretty well contained I just want a lumpectomy. I can't even remember what the doctor told me about it when he called last Friday. I'm scheduled to meet with a surgeon tomorrow morning. I'll listen to her recommendation - I'm just afraid she'll say the same thing. OH -- and also, I had endometrial cancer just 2 yrs ago - a pretty miserably aggressive thing that was treated w/a hysterectomy, chemo, and radiation. Hair came back 1 yr ago and life has started getting back to normal. This totally sucks! Recommendations? Suggestion on intelligent questions to ask the surgeon tomorrow? Thanks, -
tonidine- so sorry you had to join our club, but welcome! It’s the testing positive for the BRCA gene + now having a BC diagnosis. The diagnosis means that more likely than not the cells in your breasts are starting to be affected by the gene mutation. This 1st one is likely the first of more. Mastectomy is the standard protocol. Yes you could choose lumpectomy but it comes with rads. Rads can really do a number on skin color, Sun quality and contract the tissue of your breast. If you like your breasts the way they are and the BC has not found its way to your lymph nodes then you can likely get away with just mastectomy. (Be sure to ask that question).
Mastectomy does not mean ugly scars. Recon has come a long way and can even be done at the time of mastectomy. I had immediate DIEP flap recon when I had my mastectomy. I went into surgery with breasts and came back out with breasts. Mine were somewhat saggy from having 2 kids but not too bad and now i have the breasts of my 20 year old self. They’re soft and warm and look/feel 109% natural because they are made of my own tissue not implants. And you can’t even tell anything was done unless you look close and know where to look (i had skin/nipple sparing mastectomy). Plus with dIEP you get a tummy tuck too. I just wanted you to know mastectomy does not have to ruin your look or mean the end to low cut outfits/bikinis or even going topless confidently. Feel free to ask questions! Here’s a link to one of the top centers in the world that does this type of recon:
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team