Surgery in stage 4?
I am curious to see how many of you have had surgery and what type? I was diagnosed in Oct 2015 with Her2 positive breast cancer with a few bone mets. I was scheduled for a double mastectomy after 6 rounds of chemo. After getting 2 more opinions from oncology surgeons, I cancelled it because they both did not recommend surgery at this time. From what I have read, there are differing opinions on this. Thanks!
Comments
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Yes, there are certainly differing opinions on surgery vs. no surgery for stage IV. Some feel that surgery decreases the tumor load. I do not know if there is research to support this or not. I had a bmx, but at the time it was thought that I was IIB. Within 6 weeks, before I had a chance to start any tx, I was found to have a bone met. So, I've had surgery, but never chemo. I have done well on aromatase inhibitors for 5+ years. Best wishes to you.
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I did have surgery but same situation they had me diagnosed at stage 2 and 2 weeks after my mastectomy they found bone tumors and I never started/completed treatment. In retrospect I'm glad it happened that way I personally feel better knowing that the original tumor is gone. My onc did say that had they known I was metastatic they would have left the tumor. Good luck
Kristi
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I'm curious about this too. Anyone present with Stage 4 and get surgery? I'm ER/PR positive and surgery was not recommended for me. Only had mets to bone in beginning and now I have some in liver. I've been reading that there are still clinical trials conducted on this. Which makes me start to feel there is a benefit.
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I did not have surgery, but I was aware of the clinical trial to evaluate the benefit of surgery (and it was mastectomy not lumpectomy I believe) for stage IV patients when I was diagnosed. My cancer center was taking part in that trial. My breast surgeon thought that there could be a benefit from surgery, but my oncologist believed that the trial would show that there was no difference between the two groups. Having surgery outside of the trial was not an option. Part of me really wanted to be rid of that tumor. I decided not to participate because I was feeling good and didn't want to disrupt my life anymore than I had to. I didn't want to spend time recovering from surgery and radiation. Of course at that time, I thought I wouldn't last long. I just wanted to spend every day enjoying life. Do I regret that decision? No, not now. I feel better looking forward rather than back. Would I have surgery if I had to make that decision over again knowing what I know now? I don't think so. The tumor in my breast has shrunk to the point that it is no longer palpable. I realize that there are still cancer cells there, but I am not convinced that they are making my prognosis any worse. I think it will take years to know the true results of that clinical trial. In the meantime, there is no compelling evidence either way for or against surgery for stage IV. It leaves us in a state of limbo, not knowing what to do. There is no right or wrong way to go. All we can do is listen to recommendations and options that are available to us. Once we choose a path from what is offered, we should go with it and not look back. "What if I had " and "if only they had" have no place in our lives. We can never know what might have been, but we are here today, and that is all good.
Lynne
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I had a double mastectomy and reconstruction after stage 4 Dx. It was my choice but I wanted as much cancer out of my body as possible. I only had one bone met at the time. It was a tough surgery but it helped me mentally and I have never regretted it
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Kay, You brought up an issue I hadn't considered. If I had only one bone met at dx, I wouldn't have hesitated to have surgery. I had extensive mets, so my head was in a different place. I am glad you were given the oppotunity to have surgery.
Lynne
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my story just started, i had surgery in November for hydrocephelus which had started to impact my ability to walk. I could hardly walk even with a cane and 2 docs even thought I had Ms which did not make sense as i am 67 and ms usually hits much younger.
Anyhow, i was doing rehab for the hydrocephelus and developed tummy Pain. Was referred for an abdominal scan which showed the cancer had met.
Both my nuero and my onco tell me my surgery had nothing to do with the new cancer after being clear for over 8 years. Note did everything suggested at the time for my dcis
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I had a lumpectomy because I needed to know that the monster was gone from at least one area. My Dr. left the decision to me and I have no regrets. They also did an oopherectomy so if I was going to have surgery then I wanted the culprit out firs
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The data is really mixed in terms of the benefit of surgery in the setting of metastatic disease. Generally it is NOT recommended unless there has been persistent control at the distant sites (or no evidence of disease) while there is persistent disease in the breast. There may be advantages to leaving the primary tumor in place - it can serve as a marker of increased growth for instance. Some studies show that there can be a "release" effect on the distant metastatic sites if you remove the primary. There is certainly nothing wrong with waiting a year or two before making a decision about the surgery. Ultimately, how HER2 positive cancers are treated may be different than other breast cancers because the new targeted treatments are so incredibly effective.
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I had a mastectomy and axillary dissection after reaching NED with chemo. I had a solitary bone lesion and was ER+. Tha plan was to continue with chemo after surgery, unless I was NED. Then it was on to radiation. That was 9 years ago.
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I am so happy to see you ladies are strong and moving forward. DX of IDC had UMX in Dec. I had CT chest, abd and pelvis, something showed up on Kidney, appointment to see Urologist on Monday. Had PET saw MO the other day, a spot on bone, and possible spine. MO put me on hormone therapy, I am frustrated that this process is so long. But I see a lot of ladies with no Chemo or rads only Hormone and you are doing fine. Hope that is the case for me.
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About 2 years post my diagnosis, my cancer was stable and I showed NEAD (from the neck down) anywhere expect in my breast, so my MO and I thought about doing a lumpectomy. I met with a surgeon at Sloan Kettering and he was very hesitant. My case was then presented to the entire breast cancer team at Sloan Kettering and they unanimously decided not to proceed with the surgery. Their reasoning was that while it was not visible anywhere else in my body, it could still be in my blood stream. They were worried that if they removed the original tumor and it was in my blood stream, then it would set up shop someplace else, leading to a potentially even more dangerous situation. That while the original tumor remained, the potential cancer cells in my blood stream would be more likely to stay localized to it. That was about 9 months ago, and so far they were right, it still has remained contained to my breast.
However, I am a firm believer that with our disease, you need to take an individualized approach, as everybody's cancer is different and every body reacts differently to various treatments. What works for some, does not work for others. You need to look at things on a case by case basis, which is what the team at Sloan Kettering did for me. So while it maybe helpful to hear what others have done, it is best to discuss your unique case with your doctor and, perhaps a second option doctor.
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I was diagnosed stage iv from the start, er+, Her2 negative. I had neoadjuvant chemotherapy to shrink the tumor which was a cancerous slab over 2 1/2 inches long and over 1 1/2 inches wide. So it did shrink after six rounds of chemo, to what felt like about the size of a small marble. I had a lumpectomy and had a reexcision to get clean margins. Followed up with 33 rounds of radiation. Now on Arimidex and have been stable for six years.
I would not say hormonal treatment is necessarily "the standard" of care. Sometimes different regions in the U.S. approach stage iv differently than others. I was not even given a choice to start with just hormonals. I am very glad to have had the chemo and surgery. I do believe there is a study out now to determine if getting rid of the original tumor affects longevity of stage iv patients.
I also want to note that I did not have any sentinel nodes taken out at my request. My lymph nodes were not seen to be involved according to the MRI, so I opted to leave them be and am also happy with that choice.
When I was diagnosed, I erroneously thought there was a specific set of procedures and actions and treatments taken to dela with breast cancer. I learned that you can steer it in different directions. As a patient, we can make choices. You don't always feel like you can make the smartst choice because it is all new and nothing you've educated yourself on before, so you take a crash course on how to proceed. Part of it is going with your gut, part of it is listening to your medical professionals and part of it is gleaning advice from others who have walked the same path. The one thing I was not going to do was go the alternative route. I believe in modern medicine and would not be here without it.
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wow, this thread is throwing me! I remember thinking when I finally got properly dx'ed after 6 months of misdx, that mastectomy would be done , followed by chemo & maybe radiation. My surgeon felt my tumor needed to be shrunk, & due to size, radiation would also be needed. Initial PET showed bone mets. So it was chemo, followed by a bilateral mastectomy ( my choosing), w/immediate reconstruction . My margins were clear & I had 9 out of 16 positive lymphnodes. I put reconstruction on hold for radiation. A PET scan about 3 months after treatments showed no bone mets, but I did have mets in my right intermammary chain of lymphnodes. Original tumor was on left breast. Radiation to this new sight took out the cancer. I took arominsin for 3 years before bone mets returned. Reconstruction was completed years ago. I have been living 8 years now since finally properly dx'ed. Also, my cancer was not seen on mammogram, even when it got to size of a grape, & bone mets never showed up on bone scans
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I just met with the surgeon on my MD Andersonteam yesterday and with my response to chemo so far (3 of 6 cycles) and my single bone met, they recommend a lumpectomy in April or May. She stated that had my mets been more extensive, the would not suggest it as a benefit.
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My understanding is that surgery comes up if you have very limited mets that are controlled by treatment or gone. I am in that category, maybe, but still on the fence about surgery. The surgery itself is definitely stressful. I have to weigh the certain stress against a possible benefit. Also, as someone mentioned, there have been studies that show the loss of the primary tumor signals the cancer to metastasize.
The data on surgery vs no surgery is all over the place and mostly poor and biased. You can't really do a double blind trial when one of the treatment arms is surgery. And you can't ethically randomly assign women to surgery or no surgery. The trials that have been dove have problems.
If I have a couple more awesome scans I'll get a second or third opinion at one of the major cancer centers to get the latest view on this. It's a tricky business indeed. The good news is that you have some time to ponder. This is not generally discussed for people whose cancer is moving quickly. Like many decisions in the wilderness that is stage IV cancer treatment, it is ultimately a personal decision.
>Z<
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Z, it certainly is a decision to ponder. I asked about the conflicting info (helps vs leads to more mets) and while the surgeon seemed very positive about it, I have significant mistrust of the medical industry, yet I'm now forced to rely on them. It's hard to tell where the benefit/profit line is drawn
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I tend to assume that everyone is well intentioned, but people believe in what they know. Surgeons believe in surgery, radiation oncologists believe in radiation treatment and medical oncologists believe in pills and IV (systemic treatments). In defense of surgeons, the care of most cancer patients is coordinated by medical oncologists. As a result, I think local control like surgery and radiation is probably under utilized. This is why big decisions and major cancer centers are evaluated by a Tumor Board that has representation from the various expertise.
And, of course, MO's, RO's and surgeons are not trained in complementary oncology which is (part of) the reason why they tend to undersell lifestyle changes and supplements. So even the Tumor Board misses the complementary angle.
The truth is I am the only one looking at both the whole picture and the relevant problem ... me, me, me. I am also the only one spending more than 15 or 20 minutes at a time on my case. Crazy since I have the least "expertise" but still I believe I can listen, learn and ask questions and discuss until I get to the right answer.
One big reason to get a second and third opinion is to allow yourself the time to educate yourself. Even if you get basically the same information three times, it can take us three 20 minute sessions separated by some thought and discussion, to understand what the issues are and ask all our questions.
Ask a couple more oncs, read and discuss, ask some more oncs. Eventually you will have an answer you are comfortable with.
>Z<
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I have had multiple surgeries since my diagnosis in 2009. Double mastectomy, 2 reconstructions, 2 port placements, total hysterectomy, emergency gallbladder surgery, and just recently bunion surgery. It's sad that the anesthesiologist knows you by your first name.
No regrets!!
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No surgeries, except for the port placement.
It was disappointing at first, but now I'm at peace with it. My primary tumor has shrunk to half its former size, and two new tumors that appeared subsequently have since disappeared. I am still only on anti-hormonal medication, plus Ibrance.
It would be tempting to try to get rid of all the cancer with surgery, but I had mets to my lung and sternum from the start, and multiple lymph nodes affected. Both my oncologists told me that surgery was "off the table."
In the end, I am grateful that I have not had the pain and inconvenience of surgery. And I am super afraid of lymphedema... so there is that to consider, too.
It's weird, though, that I am still kind of a freak, even at the cancer center. Health care staff ask which surgeries I've had, and they make me repeat: "No surgeries" - like they hadn't considered that as a possibility for someone with my diagnosis.
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most ~ yes I was dx stage er positive out of the gate with it in 14/35 lymphnodes and a marble sized liver lesion . At first it was going to be right onto ibrance and arimidex, but then I saw an oncology surgeon to remove my
Ovaries for estrogen suppression. He looked over my file and scans and said. "Why are you not having this tumor removed from your liver Tomorrow?" I told him I was told I wasn't able to have that and he strongly disagreed. He went in and called the liver specialist that second and confirmed I was one of the 6% that qualified for the surgery. I had heavy chemo first AC. And that shrunk my large tumor in my breast to where I could no longer find it. The lesion on my liver was barely able to be seen, had surgery in June 16, left mastectomy, nodes removed , liver resection at the same time. It was rough. Followed that with 9 abraxane. After all this the little buggers were setting up camp in a few spots in my bones. But i count my blessings anyway because , in my mind I was rid of a huge amount of cancer that I would prefer not have hanging around. So I understand why frustration would be apart of not understanding why stage four couldn't have surgery. I wasn't clear about that either. But I thank god every day for that chance. I hope you all see a chance for something as well to make you well. Rest well ladies ~M~
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I have to say I am so so glad I continued and kept reading. I have been diagnosed with st IV MBC, at first it was surgery chemo etc. etc. then all f a sudden its MBC and hormnal therapy. Ibrance and Arimidex. What. No surgery, chemo, radiation ? Kinda freaked me out. So as of Tomorrow I officially join the group. I am glad i have found someone who is on a similar journey. I am freakin scared all the side effects, but I gues this is a new line of treatment in the diagnosis. Wishing you well, and hoping to see more posts lie this. We are the new frontier. We will be the first in a long line of sucesses that will lead to more sucesss in this disease!
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Deb~I am on the same path with the ibrance and anastrazole, I have come to the conclusion that the side effects are mainly from the hormonal therapies. Ibrance is relatively mild and it's actually an easy protocol once you're adjusted to it. The first two months you may have a little up and downs and feeling tired with some pretty heavy hot flashes that drive me insaine. It's not pretty, nor any fun at all, but for me that is pretty much the worst. I have to have monthly XGeva shots to protect my bones! Those shots suck, about 24 hours later I am flat on my back with a major headache, and body aches in my joints of jumping pains. Claritin I take every day to help with that, I am sure it helps with any inflammation or irritation from the shot. I also pump my body with Aleve two days before and two days after. It does help! So.... I went through tons of surgeries and fears of every test I've been through, filled with worry and fear of yet more spreading. It's just a world I really didn't want to belong, but who would. It's a horrible place to live. There is no freedom anymore, I don't look at things the same. I don't trust anything or anyone outside my circle. The sky looks different to me now, temporary i suppose, the trees are greener but it's like I'm not allowed to look at them the same way because everything has changed. It's still called a tree and I am still called myself, But I am not. Everything has changed and I can't go back. Ever again. I am just lost and live everyday with worry and fear, of my next scan,hearing sound of the oncologists cart rolling down the hall to tell me the results. I hate the associations that I have now with the most simplest of things. The smells as the third floor elevator doors close on route to the infusion center. That vapor smell in my sinus from port access. It all takes some getting used to. If I'm honest. I have to take my life day by day. ~M ~
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Deborajoy - My gut is that we'll do better because they did not give us the surgery radiation chemo. My heart goes out to the stage I ladies who go through this hellish treatment protocol. They are pushing these poor ladies to their physical brink out of fear they will get to stage IV, but I don't think Stage IV will be seen as a big deal in 10 years and these ladies are going through all that for nothing. I think we're the generation that will demonstrate that Stage IV is chronic but not terminal. Welcome.
>Z<
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My opinion is that there is still no cure for bc. You can be diagnosed stage 0 and still progress. You can be diagnosed stage 3 and never progress. Those with lesser stage bc at first diagnosis often live with the specter of "will it return" somewhere down the line.
We know women who throw everything at the disease in the early stages yet still go on to metastasize. And some take a minimally invasive approach and never have a recurrence. No one can say who these women might ght be. Still a big unknown factor.
My exerience is that at being diagnosed stage iv from the start and having neoadjuvant chemo, surgery and radiation and then antihormones has worked well for me. Six plus years no progression. Six years ago, I did not know that I would still be here. Why am I having a good respnse to treatment? No one can really say.
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Divine~ I am so happy that you're having such a good response to your treatments. I have also had many surgical procedures, along with a left mastectomy and nodes, I was just happy to get the cancer out. But I learned that I was presenting at stage four very strangely. I was told I was an anomaly and that they had no protocol to follow, they were just going to be aggressive with me because at diagnosis i was 45 and in the best shape of my life, I had barely any excess fat on my body and I had muscles and was very toned! They felt I would power through the chemo, and in their eyes I did, my onc calls me tank! I still feel fatigue and am finally jogging again, I am taking my time and trying to find my place in the fitness arena. Having had the chance for the surgery, I am more than pleased that I was given the option Because of that chance, I have had a ton of cancer removed, and I agree there is no rhyme or reason to who does well and who doesn't. I just pray every night for all you strong ladies, and myself, that there is a cure in the pipeline! ~M~
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micmel, I disagree that it is rare and there is no protocol. There are differing opinions for sure. In 2011 I was 47, fit as can be, Stage 4 out the gate. Threw everything at it but the kitchen sink. My ONC said lets hit it hard in the hopes that it won't come back. It still came back. Mrs Divine was dx'd Stage 4 around the same time. She did not have all of the surgeries and stuff, and hers has not come back. However, I feel i hadnt done it all, and it came back, I would have been hard on myself for not doing More. You can't second guess cancer. Nobody knows the "best" way yet. And everyone is different anyway. The first year with all of the treatments and surgeries was the worst. It gets better, you'll get stronger. you are forever changed but you will find your place in this world again, and it will be good again. {{big hug}}.
Stefanie
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Stef, my treatment did involve chemo, surgery and rads.
I agree, there isn't a "best approach. I knew I wanted to avoid mastectomy if possible, so I did chemo first to see if it would shrink the tumor. It did, so I was able to have the lumpectomy. Another woman may have chosen masectomy or a double one prior to chemo, or may have chosen to bypass chemo and go with anti hormones and no surgery, ect.
There are so many variations of treatment. That surprised me. I thought there was a rigid, main course of action: do this first. Then do that.
It was unexpected that I had choices. I had to learn along the way, as we all do. I had to find my voice. Learn to trust my decisions. There isnt a one size fits all. -
Stef~ I am hoping to find my place in my new world and accept who I have become. What my oncologist meant when I was diagnosed. I went from stage two to four in less than two weeks, it was in my nodes and breast and they weren't worried about spreading at the time. When I had my CT scan and a tiny little pencil head surfacelike spot appeared very lightly hardly even formed on my liver. He said that when most stage four presents, it's already all over and most time into the bone. That hadn't happened with me at the time, and that's what he meant , from patients he has seen, it wasn't the normal and that I was headed for ibrance and letrozole. But my surgical oncologist said oh no! We are removing that now!! From what I have learned, Going through this, once you have it beyond the nodes/breast they only will operate for pain relief and rare instances. Or emergencies and problems. Because when my onc first told me, they don't operate when you're stage four it's all oral. I felt very upset and the first question out of both hubby and my mouth was why wouldn't you remove the cancer?? So either way, I just wish that there was more attention paid to MBC and that more ladies would be able to decide for themselves if they want surgery or not. Not just be told this is how we do it. We should have the choices. It is our body. ~M~
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It's interesting, sometimes docs on the same team disagree on this topic. Soon after my diagnosis (stage IV de novo) at age 41, my MO basically said why bother with surgery since I had a bone met but the BS believes in local control and since my tumor shrunk and the bone met is just a single location, she's recommending a lumpectomy. I may also be in a trial for some type of aggressive, specialized rad to the hip bone, so we shall she.
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