I’ve had a bad night. I’m struggling because I want to have a double mastectomy and my husband and son does not agree. I’m on Ibrance and Letrozole I do Lupron shots and xygevia shots once a month. My husband keeps saying it’s too radical bc I’m on the meds and will continue to be so why not have a lumpectomy. I don’t want the cancer to come back in my breast. He asked me tonight well there’s a chance for it coming in other places are you going to get those places cut off or out ( eyes, more bone mets lungs ) I told him that was far fetched but he said what I wanted didn’t make sense bc I’ll always have cancer. I just need the two most important people in my life to support me. Well I can rant and pity party here and he will never know it. He says cancer is not my excuse to be grumpy and sad. I can be here and you all understand. Do any of you regret your mastectomy I feel this is what I should do. It’s not like I just woke up one day and said hmm I think I’ll have my breasts taken off. It’s not been an easy decision. I know I sound like I’m ungrateful for my husband I’m not I love him with all my heart I just needed a place to release.
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I was scheduled to have a mastectomy and was requesting a double . After 26 weeks of red devil chemo the tumor had shrunk enough to just have a lumpectomy. I was concerned too, but my team felt that all that surgery and recuperation was unnecessary. Recuperation is much longer and more problematic With a mastectomy, a lumpectomy was hard enough. As I've said before in posts, I had 6 weeks radiation and am now on my 20th cycle of ibrance and letrozole, monthly xegeva shots. It comes down to what you feel comfortable with, I'm anxious all the time, about when the demon will arise, but I trust my Drs and their team. Naturally your family wants the best for you and have their opinions too, but ultimately it's your journey. No one else is in your head each day but you. Do your Drs recommend a lumpectomy ? You have to decide what will give you the least amount of anxiety as you recuperate and all your years ahead. Prayers are with you
Last June, at 49, I was diagnosed stage 4. Large mass in left breast, small mass right breast, 2 lymph nodes, every bone in my body, and 7 spots in my liver. 3 cycles of Lupron, then had ovaries removed. 10 cycles of Ibrance and Femara. First was 125mg, the rest are 100mg.
Lymph node masses gone, right breast mass gone, left breast mass 70% gone, liver masses shrinking (took 8 months for them to start to show shrinkage on scans), bones not progressing but are healing.
There are no guarantees that any stage 1, 2, 3, 4 of breast cancer will not return later. But, if you are going to have surgery, think about having your ovaries removed. The Lupron only reduces their estrogen production to "an acceptable level."
You have to make a deci sion that you are comfortable with! I wish you well in your decision!
I personally wish I had gotten a double mastectomy at my initial dx along with my chemo and radiation.
My onc said I didn't need to do a double. Well, almost five years later, after almost 5 years on letrozole, they found cancer in my other breast. I demanded a mastectomy which I had May 10th 2018 and I thought I was done! Wrong!
After further testing they found it had spread. I wish I had gone with my gut and gotten a double mastectomy after my initial dx! Oh well.
Don’t beat yourself up, Mari! When diagnosed with BC in 2000, I had a 1.1 cm lump in right breast. I elected to have bilateral mastectomy and had a couple of lymph nodes removed on each side. Pathology showed no sign of cancer in surrounding breast tissue and none to nodes. I was ecstatic and had no follow up therapy whatsoever.
BUT in November 2017, BC had metastasized to my spine and pelvis. My same cancer surgeon of 17 years earlier asked me why I didn’t take tamoxifen following my surgery. My answer: No one suggested it—his oversight. He looked sick over this realization.
Now, just like you, I look back at “if only,” And yet this disease is so crafty and unique. Mine ended up being a very slow growing beast who showed up one day to say, “Fooled ya!”
My point is simply how none of us should ever blame ourselves. Those forks in the road and our choices, I believe, lead us down the road where we were meant to be. JMHO. God bless you, Mari! 🙏🏻❤️🙏🏻
Here’s my personal experience FWIW. I had a mastectomy with first diagnosis in 2004. I found it very painful. Both the surgery itself and the tubes they insert in your former breast to drain blood and other fluid after surgery. Post surgery they remove the tube which is snaked inside your body. Also very painful. Now I’m MBC since June 2018 in sacrum and scalp. I would not bother removing my other breast which shows no signs of cancer. I rely on Ibrance and letrazole. I’m not an advocate for surgery unless absolutely necessary. It’s painful and there’s always an infection risk. If your mastectomy was intended to be prophylactic pre MBC, that would be one thing. But once a patient is MBC, my preference is to avoid any unnecessary assaults on my body. Good luck whatever decision you make. It is a very personal choice which I would never question.
I'm not speaking from experience but from what I've seen of others. It seems the reconstruction is the difficult part. If you are old enough not to care about missing breasts, it seems to go easier. I'm 60 and I could be just fine without them. My mom had no problems after her double mastectomy. Cute little shirred tank tops.
I've also noticed if a person gains weight after radiation, the breasts don't grow to the same size.
I feel for you making this decision, but it is yours to make.
It is hard when our loved ones don't understand. Here you can vent, etc., Because we all need a safe way to be able to vent. At some point, it is hard for our loved ones to really understand, they love us but they aren't walking in our shoes. We do understand here because we are on a similar journey.
Sorry to be the bearer of bad news but mine metastasised several years after I had had both breasts removed. It seems there are no guarantees with this disease. I would suggest going along with what you feel is best for you, after listening to what your onc has to say. Your family will come round to your decision even if it does not chime with their thoughts. Good luck with whatever you decide. Xxx
Do whatever feels right to you...I hated my breasts when I found I had cancer and wanted rid...however that was before mbc and that’s a different scenario
If you’re going to worry about it coming back in your breast then have the mastectomies...when all said and done breasts are pretty useless apart from feeding babies with...you can listen to people’s advice but it’s your body and your choice..you’re the one with the disease not them
I had a lump in my left breast. My surgeon told me that the type of cancer I had could show up eventually in my other breast as well. I had choices of radiation and a lumpectomy, single mastectomy and chemotherapy or double mastectomy and chemotherapy. My husband and I together decided on a double. I deal with lymphedema daily and pain. And I now have reccurance in my chest wall. Turns out it wasn't necessary for chemotherapy- and I am now told that it wouldn't have made any difference on my type of cancer. And my Oncologist does not do radiation on the waist and up because of the damage to lungs and heart. If I had to do it over, I would simply do a lumpectomy. Since you are already on medication, that seems more logical. But you have to do what you feel is best for you.
And when your husband tells you that you have no right to be grumpy, tell him to try taking all your medications and dealing with the physical and emotional problems when dealing with cancer!
A surgeon removed several small masses off my chest and my pain and swelling was greatly reduced for several months. Then it slowly returned. I'm told this is the most difficult area to treat. Basically I think we are part of a case study on the medications they try on us! I'm adding fresh goats milk with local honey to my diet, along with leeks, garlic and beets. Trying to back away from medications. The side effects are becoming too much for me. I've had to cancel my PET SCAN for the 2nd week - still dealing with the side effects of flu.
You know, I feel like all of us are in some sort of case study. They give us meds til they don't work anymore. Then they move to something else. Trial and error.
We just need to pray that the treatments work and somehow soon they can come up with a cure.
I have been watching a documentary on Eastern medicine where every treatment is utilizing herbs and getting amazing results.
It boggles my mind that we in Western medicine don't have trials with herbs, spirituality and nutrition. Makes no sense to me!
Their treatments don't have side effects and they have cured stage 4 in many people.
The documentary goes through seven Asian countries and interviews Drs. At the forefront of cancer treatment. Without fail, each dr. Talks about the damage that chemo and radiation do to our bodies and immune systems.
We need to build up our immune systems to fight and destroy the protective coating on cancer cells so treatments can kill them.
Amazing logic!
Check it out! It's done by the same people that did The truth about cancer.
After each episode I'm upset that more isn't done here in a natural mode. And that naturopathic drs. Aren't covered by insurance in America.
I can't even afford acupuncture, tai chi, iv vitamin C, ozone therapy etc. That are all free in the Asian countries because of their healthcare systems.
I did not have a mastectomy as I was diagnosed at stage IV and so cancer cells had already established themselves elsewhere--extensive bone mets in my case. I did have a lumpectomy and it really was not a big deal and I was comfortable with that decision and have continued to be. I just passed the 15 year mark living with mbc. My onc suggested that we could "use" my affected breast as one thing to monitor and I still do monthly breast exams and the small progressions I have had have included me knowing that something is going on. But that is what has worked well for me, both physically and mentally. The decision is very individual. It is important to know that even a double mastectomy cannot and will not find every single breast tissue cell for removal. To me, it always makes more sense for us to have a double without reconstruction as the double will keep us from being off balance, and reconstruction can complicate finding new areas of cancer. It really is your decision and your husband and son should be honoring that! Has your husband come to onc appts with you? Could you let your onc know that you need more support from your husband so the onc can talk about that with him? Has your husband always been somewhat bossy towards you? Alot of cancer centers have social workers who offer family, couples and individual counseling. It really is okay for you to stand up for yourself and tell your husband all the ways your life is changing! The fear that comes with this diagnosis, the side effects, the fatigue. Know that you do have support here.
I would ask for your onc’s advice , since they may be opposed to doing any radical surgery while you are on ibrance treatment . There is the risk of infection and risk of progression if you stop ibrance for any significant time .
I had a right mastectomy , immediate reconstruction with an implant , and right side axillary clearance in November 2017. It took some time to heal and I did have some discomfort but luckily I didn’t have any complications at the time . ( A year later I did however have to treat a very painful frozen right shoulder, which was probably as a result of trauma from the surgery and I will always be at risk of developing lymphodema in my right arm ) .My bone mets were discovered soon after my mastectomy (I had 16 out of 18 positive lymph nodes so had to have a right side axillary clearance ) following bone and ct scans and I started on the ibrance / Letrozole combo in December 2017. My left breast was unaffected , but following the smaller reconstruction on my right side, I was now very unbalanced (having gone from a FF cup to a C cup) .I requested a reduction on my left side , which my onc . after much discussion with my surgeon , eventually agreed to ( since I was stable and had no evidence of active disease following my ct scan in October 2018). My neutrophyls were above 2 and my WBC were above 3.6 , so based on my bloods, I was given the go ahead. The breast reduction was a much smaller operation and I had it done in my week off ibrance , as a day patient . I was put on antibiotics straight after the day op and was given 5 days injections to boost my WBC to fight any possible infection.
All went well at the time and I continued back on my ibrance cycle as normal after my usual week off. After a month of healing I saw my lovely lady surgeon and all was ok .Then about 6 weeks after my reduction I had irritation and my wound area was very red and sore ...it turned out that the soluble stitches were ‘spitting’ (pushing out) and they caused irritation / infection . I was put on antibiotics for a week and luckily the problem was sorted . I am now very happy with the results ( I have one natural breast reduction and one reconstruction so far without a nipple , following mastectomy )and I am still doing well on the ibrance /Letrozole . I have also had an annual mammogram recently on my reduced natural breast which was fine , as well as tissue from the reduced breast being tested after the op , which came back fine .
I can really understand your wish for a double mastectomy , however I would think twice if having major breast surgery while still needing ibrance treatment . You really need to talk it through with your onc and surgeon , but I wish you all the best as these decisions are not easy . X
I have just noticed from your last post that you have recently got some great results after less than 5 months on ibrance , with reduced breast tumours and significantly reduced bone mets . Congratulations ! ...I would stay on the ibrance treatment and reconsider your surgery options maybe next year ( and as one post here mentioned, check if your insurance covers mastectomy for ladies with mets ) . Much love x
Will insurance pay for it if you are MBC? It’s not the standard of care as a mastectomy is for curative intent and we are beyond that. I think the studies show it does not extend overall survival in MBC women. I had a double mastectomy initially as I’m BRCA2. I’m horribly disfigured and it feels like someone has tied a belt around my chest permanently. I also lost a lot of feeling in my chest. I also believe cording in my arm and frozen shoulder were the results of trauma from surgery. My Deip Flap took 4 operations and looks terrible. An ICU nurse recently told me she would never have unnecessary surgery because of all the bad outcomes she has seen. Why have surgery that won’t extend your life and will disfigure you if it is not necessary. Sorry to be a contrarian, but wanted to share some thoughts. At the end of the day, it’s your body, so you should do what you think is best and I hope your family supports you.
Hello, BW! You may not like my answer, but I agree with your husband. If you have MBC, there’s no point in removing your breasts.
My MBC was discovered initially in a lymph node in my armpit and subsequently to spine and pelvis. I asked to have lymph node removed but oncologist advised me to leave as is. The node (or breast lump in your case) provides evidence that your meds are effective. Also, once the cancer has spread beyond the breast, any form of excision is pointless.
I side with your husband and son. God bless you as you decide what’s best for YOU!! XO Linda
Hi, My wife (letting you know who’s responding) had a double mastectomy 10 years ago. The decision was all hers with my full support. I would have supported her decision if she only wanted a lumpectomy, but was concerned about her piece of mind afterward. As it turned out, about every couple of years, there was something that cause use to ask ‘was it back?’. Fortunately, it held off for 10 years (hence the reason we are on this site). You know yourself and what will weigh on your mind and please consider that first. Your husband and son, while they’ll support you, they won’t be the ones wondering about every sensitive area as you shower/get dressed or just live your life. If you will worry about it, it may put a cloud over you. I’m on this site to understand as much as I can, what she’s going through, to support her since she may not tell me every emotional thought she’s having.
My thought, please take care of yourself emotionally and physically, you know you best. In the long run, they will benefit from your piece of mind. Good luck with your decision.
Such a tough situation when you feel you know what is best for you and your family doesn't agree. I think you need to do what you feel in your heart is best for you. I don't know if there is a right answer. I had a bilateral mastectomy and 4 years later it was found in my bone. I was NED for 11 years after that and now it is in my liver. I don't have any regrets though. The recovery was a little tough but not unbearable and then I did have reconstruction. I pray that you will be able to make a decision and be at peace with it whether your family agrees or not.
Hello there! I understand your struggle. I was initially diagnosed with stage 3b and although I had multiple nodes on my lungs I didn't know it was related and mets until 2 1/2 years later. So back in 2016 the doctors advised I would have to have the one breast removed, but then I said there's no way I was leaving the other one. I'd rather have none than be that lop-sided. I'm small but had large breasts for my size and didn't want to be left with one. But the other thing I did insist on was having reconstruction done at the same time of the double mastectomy. This was not standard of care and not easy by any means!! I went to several surgeons until I got one to agree (had to coordinate both the cancer surgeon with the reconstruction surgeon at the same time which isn't easy and about an 8 hour surgery instead of 2). But am so thankful as wanted to recover from surgery once and not wait a year or two later to feel normal again. Being without breasts isn't an easy thing, even when you want them gone.
I'm not clear on your stage, but you have to follow your own gut and mind. I learned the importance of listening to myself and following my own path. If I could have gone with a less invasive lumpectomy, I probably would have as the double mastectomy is a pretty major surgery and a lot to deal with. I'd put myself through the least amount if I could which is why I insisted on the reconstruction right away so I didn't have to come back and do a whole other surgery a year of two later. It was a big surgery to recover from but very thankful as could feel more normal. Hope you find the path that's right for you!
I was diagnosed with left breast invasive cancer - 8 mm and no node involvement, great pathology and chose a left breast mastectomy followed by tamoxfin and then femara in 2000. In 2017 a 2.1 centimeter cancerous lump was found in the little bit of tissue left from the mastectomy and it had spread to my right lung. I had mammograms done annually on both sides and the radiologists repeatedly missed it. They could have saved my life if they had caught it before it left my breast.
You need to do what makes you comfortable, but the Ibrance/Letrozole should take care of the cancer in your breast. I would think about having my ovaries removed if they are still working. It is a tough decision and you and your oncologist need to decide what is best for you. Peace of mind is important. Blessings, Hannah
I had a lumpectomy in 2005, chemo and radiation. I was told I was cured in 2010 since I had no progression. Then, boom, it was back and had spread to both lungs. I’m now Stage 4, terminal.
Breast cancer makes no promise of not recurring BUT I feel that if I’d had a double mastectomy at the time, then I wouldn’t be where I am now. You can start reconstruction at the time you have a double mastectomy. I have several friends who did a double when the doctor said a lumpectomy would be fine. Every single one of them found cancer in the other breast that hadn’t been detected until they’d had the bilateral surgery. It’s your body. Put it in God’s hands.
Hi BlessedWarrior. I don't respond as often as I should to everyone's posts, but when I hear about yet another unsupportive husband, it sets my teeth on edge. My divorce from the same man was just finalized last week. Honestly...I only married him out of fear, shortly after I was diagnosed. But after 15 months of battling what felt like two cancers, he being one of them, it occurred to me that being alone was a far superior plan. Had he stayed one more day, so help me, I would have sewn him up in the sheets and beat him to death with a broom! Only after these people have been diagnosed with a similar, terminal illness, will they be allowed a vote in what I feel is in my best interest. Even on the days we feel fine physically, dare I speak for all of us when I say, the sheer mental and emotional nightmare of this disease is absolutely debilitating. No one but us knows how this feels...stand your ground my warrior sister and do what you know to be best for you. Take good care of yourself, and tell your husband and son to do the same.
BlessedWarrior, I am not in your situation, however I have had my ovaries removed. I think your family should be more supportive if I’m honest. It is your decision to have a mastectomy and your decision alone.
I also think that every now and then we all have the right to be a little grumpy and sad and shame on your husband for not recognising that. No one can understand the road we’re walking only those who are walking it along side us.
I hope you make the decision that is right for you (as difficult as it is) and not what is right for your family. At this time in our lives, our needs trump that of others when it comes to our health.
I had double mastectomy with recon in 2010 with clean margins & negative sentinel node. Mets diagnosis 2017! After 17 cycles of ibrance/letroziole I finally scanned @ NED (no evidence of disease).
I do have regrets as mastectomy alone is MAJOR surgery coupled with reconstruction surgery it is Major surgery x2!! I also feel like a binder is on my chest permanently as well as numbness & lymphedema in left arm.
RE: husband & son’s comments it sounds like he is bit more informed or maybe they DiD hear what you did NOT hear your oncologist who should definitely explained that METS is terminal (which shud give u a 24/7 pass to be grumpy!) I do believe that you may be past the window of mastectomy for effective treatment (perhaps it can be helpful—I’m not an expert; but that is my understanding).
You asked about regrets; yes 109% I regret mostly the reconstruction part as I’d prefer not to have breasts as gravity set in quickly! Also 7 years later I now have metastatic breast cancer. So as far as suggestion that you asked for—I don’t know how long you’ve been on Ibrance/letroziole combination; but in my case 17 cycles=NED which is more than I could’ve hoped for. The way I figure it I’ve now had 9 years from my initial diagnosis which is also more than I’d ever hoped for. Hoping that I/L combo therapy does the trick and continues to work until immunotherapy treatment (which I think may even be cure)!
Getting back to your husbands comments...sorry to get off track...I think Men just want to “fix” things and I’m not sexist—but they also definitely communicate differently. I can see it in my husbands eyes as he gently encourages me to think positively and don’t “dwell” on side effects. I think we are all entitled to be grumpy; but maybe he thinks your depressed and for lack of better word said grumpy.
I know this is a lot to take in; but please write back if I can clarify anything or if you have more questions.
I’d say good luck with your decision—but I’m afraid that you may not be a candidate for breast surgery while in Ibrance—& it is not 100% effective (I think only 25% find that it is effective; but there are a slew of other treatments when I/L fails (which BTW was initially averaged as 22 month average life dxiectancy but now it seems that’s changing to 4+ years.
Tiny victories may add up to 100% victories. That keeps me going but u do struggle with the feeling of impending dim; & that just won’t go away!
However I walk my dog on beach everyday. Yoga/meditation (“there’s an APP for that” may also prove helpful. Family counseling may prove to be therapeutic for family!
All studies point to the fact that it really doesn't matter if you have lumpectomy or mastectomy, there are no guarantees that that will prevent the progression of breast cancer. Lumpectomy and radiation, along with Aromosin or some such estrogen blocker is just as effective as mastectomy. I had a lumpectomy 7 years ago and Received 6 weeks of radiation and took Aromosin for 5 years and a year ago I was diagnosed with 4th stage breast cancer, lungs, bones, and liver mets. I'm on Ibrance and received Xgeva and Injections to block estrogen. So far, so good. We can only hope and pray for the right decision about what to do. If your mind is set and a double mastectomy then it's your body and mind and you need to decide what's right for you! What advice does your doctor give. The studies don't lie, so it's important to make a decision based on good medical fact, not just emotion, whatever you choose, I wish you the very best going forward! Trust in the Good Lord while trying to make this very important decision. God bless! Kathy from Syracuse
you need to be at peace for whichever you choose. I have been on this journey for 12 years with 4 recurrences and stage 4 for the last 8 years. I had a bilateral mastectomy. There are times for a moment that I wish I had my originals for sure. My cancer came back in other areas of my body. having a mastectomy does not guarantee your cancer will not come back-it decreases chances of it coming back in your breast. I do not regret any decision I have made in my journey because it was the best decision for me to be able to know that I did what I could do. My journey is not your journey. You may never see this dreaded disease again. Make a decision and find peace with it. Know it was the best decision for you at the time. There is no wrong decision - we do not know what the future holds until it gets here.
My cancer was found left breast 2009. I insisted both taken out because I could not live worried it would come back to other one. Asa nurse I understood the whole scene . All lymph nodes negative and on femara for 6 years. No reconstruction- I didn’t want it.
Ff to sept 2016-mbc to bones. I never regretted that decision. It was the right choice for me. You need to have peace with what you choose- it is your body🙏🏻🙏🏻🙏🏻Hugs
Sister/Warrior is your Dr./ Surgeon in agreement, because my Surgeon who was an amazing Dr. who was also a strong Christian who prayed with me, and over me before during, and after my surgeries. I had a tumor, and 12 lymph node removed for biopsy, and a margin clean up surgery. My surgeon was not in agreement, with me removing either of my breast. He was right in my diagnosis, where I had 10 of 12 lymph nodes affected by cancer. He was concerned about the cancer that had metastasized showing up in other parts of my body. My lead non Christian Oncologist said I wouldn't live to see 2009. My Christian Surgeon said a prayer that I will live, and asked me if I agreed. I agreed. thinking here or heaven. I had to have test every 3 months for years, and they kept looking for the cancer that was non existent . So yesssssss I do believe Dr. God restored me. I haven't had my tests for this year, but I have been cancer free NED for 11 years now. If God wanted me to come home tomorrow, I will continue to praise him, and give thanks for the last ten years of celebratory milestones I have been able to share with my loved ones. People think I am a miracle. I am, and I pray for God to grant you your miracle too. I also pray that you, and your family will be in agreement for what God would want you to decide. Take into consideration a second opinion Dr.s advice, and maybe family counseling from your house of worship, or a therapist who has dealt with patients , and their families going through this challenging diagnosis . God bless you, and your loved ones . XoXoXo
I was diagnosed stage 4 in January of 2016, did not have a mastectomy and I’m so glad I didn’t! My tumor is gone now from ibrAnce and letrozole. Nothing even shows up on my scans any longer. I am so glad I didn’t rush into surgery, it’s helped me to keep my life normal.
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