Did anyone regret the surgery they had?
I really just need to vent because it is bothering me more than I expected. I always said that if I developed breast cancer I wanted a bilateral mastectomy. When I was diagnosed last month I still wanted that. My surgeon was willing to do it. But we are in the middle of pandemic hell, I have a 15 year to consider, and of course all the economic uncertainty that is going on. I made the choice to have a lumpectomy instead. By far this was the best choice for everyone involved and I truly thought I was at peace with it. But I am not. I resent that this damn pandemic dictated what surgery I had. I resent that I still have my breasts when I consider them 2 grenades sitting on my chest. I am worried that if I get cancer in one of them again I have to have the more complicated reconstruction surgery due to the radiation that I am going to be having. I am mad that I got cancer and yet didn't have the surgery I really wanted.
Again, I know I did the right thing. It just isn't what I wanted and is bothering me more than I thought it would. I have cried so much and vented to my husband but he can only understand so much. I would love to hear from others if you have had a surgery that wasn't your first choice and how you handled it.
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Every time they squash all my lumpectomy scar tissue into a mammogram and put me in sheer agony, I regret not getting a mastectomy. But then again, they probably make that suck as well.
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I had a lumpectomy a little over 2 years ago, was pushed into it by the doctors, and I severely regretted it for a very long time. I was also severely angry and scared for a very long time. Funny, Covid19 is actually what has helped me start moving forward, even just a little bit. Now I have a whole new scenario to worry about every day!
I didn't believe anybody when they said "it gets better with time". I was angry when they said it to me. I was hurt because it seemed nobody understood (or cared) how much pain I was in (physically or mentally).
I'm just over 2 years from my diagnosis, and I'm just slightly less angry, less scared, less regretful, etc. There's even a day or two here and there where it doesn't consume my every waking moment and all of my nightmares too.
I'm sorry you're going through this, I do know how you feel, and I wish I had a magic wand to make this easier for you and everyone else in this sucky-ass situation.
But.....even though it doesn't seem like it right now, this will get easier in some ways. But it takes a LONG time. Feel free to reach out if you want to talk, or vent, or cry, or anything that will help you process and heal.
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Hi cm2020 , I can understand your situation. I'm glad you are able to "vent" and get these feelings out on the forum. I don't regret my surgery, but I do wonder if I should have had my lymph nodes removed. More about that later.
First, let me encourage you that this may be a blessing in disguise. Having a lumpectomy is really the preferred surgery for those who qualify (I did not). I don't know the details of your diagnosis to be able to say whether this was the case for you, of course, but recent studies have shown that lumpectomy is just as effective for many women as bilateral mastectomies in preventing recurrence. My sister made this choice over 5 years ago and she is thankfully still cancer-free. With the diagnostic capabilities that are now available, you can take comfort that if there was a recurrence that the cancer would likely be found early and it will probably be very treatable. In the meantime, you get to enjoy having breasts that are not numb. You can avoid the risk of lymphedema (there is a very low percentage with lumpectomy versus mastectomy). Your healing time is MUCH shorter and you get to enjoy being with your 15-year old and husband without being in pain for months and/or years.
I had a BMX without reconstruction. I am beautifully flat (as requested) and numb (as expected). I also had nipple grafts, so aesthetically, I don't think I look too odd. If this is all I had to deal with, I would be very happy. Although I know my surgeon and plastic surgeon made me aware of the risks of swelling and pain following the surgery, I really wasn't prepared for this mentally. Let me tell you, this is ROUGH. I think a lot of women hear/read about women doing preventative BMX and think that it must be an easy surgery. In hindsight, I probably could have asked for a BMX without removing the lymph nodes since I probably would have had to continue with chemo even if all of the nodes had come back negative due to a spot on my spine. I didn't think about asking for this and I just went with the recommended surgery. (Lesson learned!)
Due to the removal of 4 lymph nodes on each side, I have a much longer recovery than I expected. I have constant burning pain down my left inner arm to my elbow and down to the middle of my upper right arm due to nerve damange. My armpits are continually swollen and I have to take pain meds all day long to function. I'm not saying that if you had had a BMX that you would definitely have had the same problems, but there is a risk of these problems with BMX and no one knows whether they will be the lucky one to avoid them or not. Incidentally, my mother had two mastectomies separated by 30 years with lymph node removal each time and she did not have the issues that I am having. So, you never know . . . . but don't think that having a BMX is necessarily the best treatment, especially if your cancer is not Stage III/IV like mine. The best that I can hope for is that the nerve damage will repair itself over time, that the swelling won't lead to lymphedema, and that the numbness will get less extensive after several years post surgery.
My advice is celebrate your luck in having a lumpectomy! Enjoy the fact that your breasts and nipples can still react to touch and give you pleasure (and your husband LOL). When you put on your bra in the morning, smile. Your tops and dresses still fit right. You don't have to think about putting your prostheses into the cups. On hot days, you won't have to endure the extra heat that wearing foobs will bring. You don't have to weigh the pros and cons of whether or not to have implants and endure multiple surgeries or whether to have even greater risk and longer recovery with a DIEP or other procedure. Be happy as I am happy for you.
Be vigilant with your scans, especially if you have dense breasts (insist on an MRI if that is the case and you are able, since mammograms and ultrasounds can still miss lobular carcinoma like mine). Take courage that even if one of those future scans gives you bad news, that you can endure what comes next. In the meantime, make the most of having those dear handfuls. 
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I felt like I had a lot of people pressuring me to "just get them off" as one friend said, but upon researching and seeing what mastectomy surgery could be like, I was grateful to qualify for the lumpectomy. My recovery was not easy but compared to what I have seen friends go through, it was not too bad. I am thankful every day that I made this choice, I am very happy.
There is a woman in my Livestrong group at the Y who had a double mastectomy 5 years ago and she lives with constant pain. I'm not saying this is everyone, but a mastectomy is a much more invasive surgery and carries greater risks as such.
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I had a lumpectomy in July 2018, and the only thing I wish I'd done was have the non-cancerous one trimmed to make them even. I don't care about the lopsided look, but the short one is easy to go braless with, whereas the other one sags and either needs to be restrained, or I get sag rashes. Damn gravity. I also needed an unrelated, more invasive surgery on the same side of my body a few months later, and a mastectomy recovery might have made that more difficult.
"What-ifs" eat too much mental energy.
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Cm2020---i don't know. I am going to ask my surgeon, at next follow up, if there is any way to get a lidocaine injection into the area prior to mammogram. I would happily pay for that. Last time the radiologist flippantly suggested Advil, which annoyed me...I was thinking, honey, that's not going to help. I think that's part of the problem. They don't understand the level of pain we can be in. It's NOT like a regular mammogram. I can say that because my non cancer side is fine getting imaged. Last time, my cancer side hurt so bad I almost passed out and they had to give me a break before getting the last film.
There HAS to be a better way.....
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Hi cm2020! I'm so glad you came on to vent. I will say there are just a select few (lucky us) who are being forced to make choices in unprecedented times. I was considering a clinical trial and a unilateral mastectomy just as covid was ramping up in my area. Instead, I made the choice to go with a local surgeon and a lumpectomy to actually get the surgery and minimize my time in the facility/minimize my down time. It all worked out great! Clear margins and I was back to doing pushups in days. Like cyathea said, it may be a blessing in disguise.
This is not in any way minimizing your anger at this whole situation... I hear you. I too am often angry and can't believe the timing of this all. What helps me when I get angry is to flip the conversation. I found the cancer in time. I got the chance to do surgery. I am very well cared for by my doc and nurses. There are many women right now who don't have that opportunity - they can't even get their yearly exam or the scans needed to confirm because of covid.
I wish you only the best. The script had a plot twist, but we *will* get through this.
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It seems that we are not orchestrators of how this plays out-like you, the covid precedes everything, and I pray that my surgery goes as scheduled. I swore I'd have a BMX, and here we are. I believe there's a reason, and that we will be alright. The NOT knowing-THAT is the tricky part, and for me where faith comes in. i have a choice-to go through the day ringing my hands, with what ifs and anxiety, or almost pretending "it" is not there, and making the best of my day with my family.
I am so sorry that you are struggling. Please do something kind for YOU today. Me? it's tennis in the chilly sunshine, and some cleaning lol. Reach out to me anytime, k?
(((hugs)))
xx
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You ladies are simply the best! Thank you all SO much for sharing your stories and feelings with me. It has made me feel much better and truly put things in perspective. I am very grateful that I reached out to you. I have read each one of your responses and saved them to re-read as I need to.
You are all very right with everything you said and boy did I need to hear it. I am sending you all huge hugs and much love. You have helped me more than you can ever know. Thank you!
I can now move on. No more looking back and no regrets. For whatever reason, this is the surgery that was supposed to happen. Margins are clean on both masses. I was a good candidate for lumpectomy. I got the care I needed and continue to get the care I need. I am fortunate. It feels like a weight has been lifted off of me. Truly, thank you all so so so very much.
We will be okay and we will get through this.
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I am speaking with surgeon next Thursday. My plan for DCIS high grade-left breast-non invasive is a bilateral mastectomy. I am comfortable with my decision and it seems that after speaking with the oncologist and the nurse navigator, this is a reasonable choice. I was concerned it was "too much" for a stage 0 and my team has been sure to tell me that the best choice of treatment for me is what will allow me to sleep at night. I don't want to wait for the "other shoe to drop" as to say. I realize that even with that, there is a chance the cancer can return, but I will not have to do radiation, chemo, etc. barring any negative reports from surgical tissue which could state otherwise. I'm scheduled to talk to genetics tomorrow and the results of that will determine if I'll need ovary removal later on as my cells are both estrogen and progesterone positive (90%). I am menopausal (no period since December 2018). The hot flashes are MURDEROUS. I used a estro/proges patch for 9 months and, of course, had to come off of that with the diagnosis. I am anxious about my surgery (hoping to schedule week of May 11) and the limitations mostly as I am really active and stay busy. This covid-19 is awful. I am prayerful that I will be able to have the surgery and am not delayed. Oncologist wants me on tamoxifen if surgery is delayed past end of May.
I am sorry that you are regretting this decision. It isn't any fun to have a team that is not supportive of your desires and concerns.
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Dear Dmorales,
Welcome to the BCO community. We are sorry that your diagnosis brought you here and we are so grateful that you reached out to share your story. We hope that you will stay active here and use the boards to get the support that you need as you move forward with your surgery. Please keep us posted on how things go and let us know if we can be of help as you navigate your way around.
The Mods
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When I was diagnosed in January, I was leaning toward requesting a bilateral mastectomy. I learned of my breast cancer 3 days before my scheduled visit to MD Andderson for a second opinion on my diagnosis of Boderline Ovarian Tumor (a rare form of ovarian cancer treated primarily through surgery). I had two robotic surgeries last fall- a complete hysterectomy and cancer staging. I was blown away by all of this!
To my surprise, the oncological gynecologist at MD Anderson advised me to seriously consider the lumpectomy option. While breast cancer is not her primary focus, she felt that my long term outcome of lumpectomy/radiation was just as good as the mastectomy.
When I returned home, I had the opportunity to spend time with the radiologist who performed my biopsy. She advised me that she also recommended the lumpectomy option. From her perspective, all indications are that properly performed lumpectomy followed by the radiation protocol reduces recurrence risk to that of bilateral mastectomy. Should there be a recurrance or a new cancer, she feels that research is indicating that it can be detected earlier if there is still tissue left to mammogram. I don't know if she's right but it makes sense.
My breast surgeon also recommended the lumpectomy so that became my choice. Then there was some drama when another mass was detected on MRI. The biopsy show that to be benign but "suspicious" so the planned surgery became a double lumpectomy. Recognizing the amount of disfiguration that would result, we proactively added oncoplasty so I also had a reduction/lift. This allowed the breast surgeon to be more generous with her margins.
Surgery and recovery during a pandemic are not ideal. My preparation was non-existent and follow-up care has not been normal. I'm having more discomfort because the plastic surgeon did not see me until over 2 weeks post-op to resolve a minor issue. I now have some stitch threads protruding that are uncomfortable but can't be dealt with for another two weeks due to appointment restrictions. I'm not at all happy that my team is adamant that I get my radiation started as soon as the plastic surgeon clears me - I was hoping to get a few weeks of feeling OK. Breast cancer is not anything that any of us ever wanted to have.
I believe that I made the right choice for me.
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Dmorales I hope that your surgery happens when it is scheduled and all goes well. My surgeon supported whatever decision I made. She made it clear she wanted me comfortable with my decision. Ultimately what made me do a lumpectomy instead of a mastectomy was the pandemic. But I definitely felt very supported. In fact, I had a telephone appointment with my radiation oncologist this week and I was surprised that he knew my original plan was for a bilateral mastectomy. He questioned me about my change of mind, and how I was feeling now about my choice. He also spent a good deal of time reassuring me that my choice was a good one and that my prognosis was excellent. While I have since made peace (since i posted this original post) with my decision, I do hate that I (and many others) are put in this position due to the pandemic.
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CallMeTenacious Thank you for the support and letting me know what your drs have said. It is very comforting and does echo what my drs have said as well. My MRI found another mass too and so I had both removed during my lumpectomy. My surgeon was able to get both masses with one incision which I was very happy about. How nice you could have a reduction and lift! I moved to quickly to have that be an option..you are lucky! I hate you have to start radiation so soon. Mine will start in early June it looks like. I need to start hormone suppression but that got derailed when I discovered that the med I take for chronic hives (just went back on it so it wasn't known to my oncologist when i saw her) is contraindicated with Tamoxifen. So I had to have hormone levels drawn this morning to see if I am in menopause. Hopefully I will be because that is the only way there are other med options for hormone suppression. Definitely an unwelcome wrench thrown into the situation.
You know I would recommend you talk to your plastic surgeon about the radiation and see if he will work with you to come up with a time frame that feels more comfortable to you. You definitely want to be fully recovered and prepared to deal with radiation. I hope all goes well for you.
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I'm so sorry you weren't able to get your preferred surgical option! I hope that the evidence that currently supports lumpectomy + radiation (when possible) as somewhat superior to mastectomy will be comforting for you.
But I also believe that when all this COVID19 stuff simmers down, you should be able to go back and get a mastectomy if you want. I think I have read on these boards of women who had a lumpectomy then later followed by mastectomy - not because of recurrence, but for personal preference, screening issues, etc.
So if your heart is set on a mastectomy, don't give up on it yet. It could very well still be possible and covered by insurance.
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Salamandra Thank you so much for this info! This is very good to know and I am going to keep it in mind. It is so good to still have options.
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hello sweetie when I found my lump I was preparing and making wedding plans for our 2nd marriages. The man I prayed for God sent then this I didn't want to go into new marriage with one breast so I wanted a lumpectomy. But mastectomy was recommended so went for it even though I wanted just lump removed. It all worked and I pray that you have Peace with the choice also. msphil idc stage2 0/3 nodes 3mo chemo before and after L mast then got married then 7wks rads and 5yrs on Tamoxifen. Praise God married 26 yrs this year and a 26 yr Survivor. Keep Hope and Positive thoughts helped me.
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I had my lumpectomy (left side and 2 lymph nodes in the pit) 01/2018. All but the latest were very painful for the 6 month mammograms. I had one a couple of months ago and found the greatest tech by some miracle.
As for the radiation, I have a few regrets for not getting the mastectomy. I was really thinking about saving my career in the short term and not looking at the big picture. Don't get me wrong, no signs of anything so far. My lumpectomy was pretty good so I went right back to work (a few days later) with weight restrictions. It was kind of difficult for the first few days, but I made it. If I had had the mastectomy, my surgeon thought I might be out for a month. I also recall that the choice was mine, or rather, one wasn't any better choice than the other, based on my type of cancer.
So, if this had happened to me now, with this blessed pandemic, I would have opted for the mastectomy. Hindsight's a bi-ach.
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msphil ...thank you for sharing your story. You are an inspiration...congratulations on being a 26 year survivor!!!!
sweetp6217. You are right, hindsight is a bi-ach! I think making peace and having faith that we made the right decisions with the info we had at the time and not looking back is the best way to handle it. I appreciate you sharing your story with me.
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I am upset, angry, resigned, upset.....that, as far as my treatment goes, I had so few choices and so little time to make them. No time for second opinions, genetic testing or anything. My surgeon was great. Hospitals were just starting to curtail what they were allowing and she said that she would be happy to find doctors for second opinions but she was afraid if I didn’t have a lumpectomy soon I might not be able to get one. She did not want me to have a mastectomy as I would have had to spend time in the hospital. My sister is an oncologist nurse and reassured me that this was the best thing to do considering the virus. She helped calm my fears. I’m doing the best I can, considering, and will do more testing and research after this virus has stopped wreaking havoc.
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I had lumpectomy and chemo and radiation, about 13 years ago. I must have a tendency to form scar tissue, because over those years, I have had about 7 biopsies on the affected breast. So far all non-malignant, just scar tissue. I had had a breast reduction on the opposite side for symmetry and was pleased with the results. After all the biopsies though, I am again lopsided. More so than before. If I had known then what I know now, a mastectomy and reconstruction would have been easier, emotionally at least. Still considering the mastectomy even now. And on top of that they have pushed my mammogram beack for another two months because of covid 19.
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I was stage 2A triple negative left breast. Could of gotten a lumpectomy but opted for bilateral mastectomy with nipple sparring. My surgeon tried to tell me cancer doesn't move left to right but I went with my gut and not take the chance to find out. The chemo was hell. I had the red kind and I knew I never wanted to go through that again so I opted to get rid of both. I had friends who just did the lumpectomy and years later they had cancer in the other breast. Does not happen to everyone. One of my friends had the Braca gene and I did not. Braca or no Braca I wanted the breast tissue gone. I have implants now with fat transfer and still have my nipples. Only one regained sensitivity because my right breast gotten an infection on a drive I took down south when I should of stayed in bed. But the jury is still out on my surgeon because twice my TE expander leaked and he had to remove it so could be his fault. So one breast is thinner due to that issue with TE expander. So my plastic surgeon is suggesting the DIEP flap to thicken the skin on that breast but Im scared to do that and have a huge tumny tuck scar and lose my nipples. I may just let my nipples droop. lol On the bright side my period just returned and I wanted to cry when I felt that sense of normalcy return. I do not miss hot flashes, HATED IT, good riddance. Hope this helps you and hope you can get your surgery and this pandemic subsides.
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VeeHow I am really sorry that you are going through the same thing. It really stinks doesn't it? Cancer is bad enough but having to make rushed decisions and/or not making the decisions we really want, just seems extra cruel. I am doing much better at making peace with my choice, but it will always nag at me that I didn't do what I really wanted to do. Lots of hugs.
talbrig13 What a pain! Gosh that is just awful to have to endure so many biopsies and scares. It would not take much at all for me to go back for a BMX (if insurance covered it) once this pandemic mess is over. However, I fear it may not be truly under control and "over" for a very very long time. I'm sorry you mammogram has been pushed back too. That is extra awful for a breast cancer survivor (at a level that is almost cruel).
HopeBry Thank you for sharing your story with me. I'm glad you are healthy and doing well.
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Hi there,
I would say don't torture yourself.
You can have limited surgery now, continue with your treatment plan, and have more surgery later. It's hard to know in advance how you are going to feel about an important decision like this. Be kind to yourself, and patient. The pandemic is what it is, but your call is not irreversible. You can go back and have more surgery down the road, and many of us did that. Having second thoughts and revert course is not unusual in this journey.
I had unilateral mastectomy, which at the moment sounded like the best decision, then changed my mind after the surgery results, and had a second mastectomy six months later. That one was also the best decision at that moment. I don't regret either decision.
Best,
LaughingGull
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Cancer is hard since until this point when something was wrong you did whatever the doctor said. All of sudden there are all these choices so then you second guess them all. Don't beat yourself up. You are in a tough situation right now especially with what is going on in the world right now with the virus. Many people have revisions to surgeries later or adjustments. Getting through this portion right now is what you should focus on and hang in there. Breathe.
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cm2020 Sorry you couldn't do your preferred surgery. It is nice to know that the option is still there. I learn something new here everyday!
I am over the 2 yr. mark and yes there are days I wish they were gone--however at the time it was explained to me that lump + rads = same as mastectomy. Also my only other option was only to have just 1 breast removed. My right side had only been diagnosed as fibroadenoma before the surgery. I had an excisional biopsy on the right during my lumpectomy which is when they found the LCIS. My left breast is significantly smaller than the right but it really doesn't bother me much at all. I have experienced like talbrig13 some scar tissue. I was unaware of these post surgical changes that can occur even months and years later. I had a seroma form post op, did not have to have it drained, and it did not delay my radiation. That breast is beat up and distorted and I just had a biopsy in late January this year and have fat necrosis and giant cell reaction or something. I get high anxiety around imaging time. I sometimes feel like a school kid trying to get a passing grade on a test! Thankfully I am fine and not due for mammogram until September. Looking forward to graduating to annual screening someday, being without cancer, and fear of imaging. Hang in there. Best wishes to you.
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Hi Cm2020!
Does anyone regret the surgery they had is a great question. The answer to that for me is a rollercoaster and really depends on what given day you ask me.
I am a year an a half out from it, my biggest take away from it is to trust your instincts. If they got it all with the lumpectomy, then its not an emergency for you to readdress it right this minute. Allow yourself to heal a little, allow yourself to feel whatever you feel because whatever you feel is a real and valid feeling. If more time passes and this pandemic ends and your instincts are still telling you that you should have done more, then listen to your instincts.
I also chose a lumpectomy. There wasn’t a pandemic going on in the world but my life sure was in a shambles when I was diagnosed. I was going thru a divorce, had just moved to another state out of necessity rather than desire, I was literally 6 weeks removed from being given the all clear for normal activity after a hysterectomy (endometriosis and ovarian cysts) my mother was in the hospital having suddenly gone into end stage kidney failure. I literally walked from her hospital room to my mammogram appointment where my lump was found.
It felt like I was in the eye of a hurricane with no where to go without getting swept away.
When scenario planning or imagining what I would do if/when I got BC, I have a family history of it, I always said I would go radical and just get rid of the girls. I found however that imagining what I would do and actually pulling that trigger where two very different things.
Ultimately, the survival rate between the lumpectomy and the double mastectomy wasn’t significantly different for me and with the shit storm that was my life at that time, I just wasn’t up for a bigger more physically and emotionally draining recovery.
Part of me still can’t help but feel like a lot of the emotions turmoil that comes with having cancer would be reduced if I had just gotten rid of the problem or grenades on my chest as you said. But also another part of me knows I couldn’t have made a different decision for myself at that time, in that moment.
Like I said tho, if your thoughts don’t ease with time, you really should trust your instincts.
I don’t know if you are a Walking Dead fan or not, but Ezekiel once said....”It is not too late to walk back from something decided.”
Peace be with you.
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LaughingGull, bcincolorado, ctmbsikia, CFKelly......... Thank you all so much for sharing your stories with me and being so kind and encouraging. It has helped very much to hear everyone's stories and experiences and thoughts after being further out from your original surgeries. The quote that CFKelly put is one that I have not heard before but plan on writing down to remember.....it sums it all up well and also is something many of the wonderful women have mentioned on this thread....I can ALWAYS go back (again, if insurance allows) and have the original surgery I wanted. For now, I am taking it a day at a time, and just grateful that the lumpectomy was successful and for now I am cancer free. I have radiation coming up in June and want to be strong and healed and ready for it. Thank you all again.....I am also very grateful for all of you.
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VeeHow,
I am sorry for the diagnosis and the rushed surgery. Keep looking up. Your surgeon got the area out. It gives you time to heal, study up on your options. Do video consults or phone consults for that 2nd opinion you want.
I am having phone consult with my surgeon next week. My obgyn ssid if I were his family with my ADH in 1 bread, mild hyperplasia in the other, new microcalcs in both breasts, family history and 57% risk, he would advise PBMX.I am not sure when they would do it.
Be safe and heal.
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