Easter encouragement

Anonymous

Easter encouragement

exbrnxgrl

Welcome back coffeepleez,

As you may remember I am almost at the 10 year mark with no progression since initial tx (rads to met on upper femur). I have never had chemo and have been on AI's since dx. I hope this provides encouragement but I am very pragmatic and will be the first to admit, along with my mo, that there is nothing I have done that is different from so many others who have progressed while I haven't. There is still so much that is unknown about mbc and it's progression yet I remain optimistic since I have seen to advances over the past decade. No cure yet, but given the complex nature of bc and the variables of different types of bc, I am not entirely surprised

I don't celebrate Easter but I hope it was a good holiday for you.

exbrnxgrl

coffeepleez,

I did not have the “privilege" of a mastectomy. For 6 short weeks after my bmx, according to the final pathology report, it was thought that I was stage IIB. My bone met was an incidental finding on an unrelated scan. I am fairly certain that had my bone met been discovered prior to my bmx, the bmx would not have taken place and I would have been fine with that too. I am also certain, as is my mo, that having surgery has not been a significant factor in my longevity as my horse was already of of the barn, though we didn't know it, at the time of surgery. Mastectomies for stage IV patients is not considered to have much significance for survival time because their cancer has already spread. Mastectomies are simply one tool in preventing spread to distant organs or bones.

I know this has been discussed extensively on bco, but the jury is out on whether mastectomies have any real value for stage IV patients. It is a major surgery and if one chooses reconstruction then the complication possibilities increase. It's a lot to go through when the benefits are questionable so just living with it in your body may not be the worst thing especially if you are on systemic treatment. Remember, cancer that remains in your breast is not what will kill you! This is not to say that in some cases it might appropriate.

Since you have expressed interest in a mastectomy and feel that it would be right for you, do you have evidence to support that? I remember that you also pointed out that research can be flawed and I agree with you on that, but the reality is that scientifically supported research is what drives medical practice and standard of care. While it's true that we don't necessarily fit into tidy research categories, it provides a framework for medical research to operate within. It is not perfect, not what we may always want but it is our current reality. I hope you can make peace with this if you are unable to find a doctor who will do what you want. Take care

Partyoffive

Hi

I’ve had Mbc for 8 years with extensive bone mets.I did have a mastectomy only because they misdiagnosed me and then found my bone mets after my mastectomy or I would not have had one. In retrospect I’m happy things played out the way they did it gave me a little time to adjust. I hope you can find a dr that will do what makes you feel comfortable and that you trust.

Kristin

exbrnxgrl

coffepleez,

We have mbc! Who's looking for an argument? I have enough tsuris in my life without looking for arguments. I may just be far more pragmatic than you are. I actually agree with you in many respects, but my uber pragmatic side understands that I have to operate within the current reality even if that reality is not to my liking. I don't think anyone is trying to convince you of anything. We are simply relaying our own experiences, which you asked for, as well as trying to help you understand why mastectomies are not usually performed on stage IV patients. There are a few stage IV members who have had mastectomies after their stage IV dx'ed and should you be able to have this surgery you would be as well supported as anyone else.

Yes, survival rates for stage IV patients stinks! However, it doesn't stink because mbc patients are not getting mastectomies. I personally don't find not having surgery to be the stupidest thing ever, especially if leaving the tumor in your breast is not worsening your situation. Have you approached your mo with the article/research that you have found that mastectomies result in better outcomes for stage IV patients? Have you contacted the researchers/authors to see if they can recommend doctors who will do surgery for you? It is clear that this is important to you so I hope you can find someone who will do this. No argument, no trying to change your mind. Just trying to help you understand the current state of affairs, which no one with bc is satisfied with. Change will come but it will be far slower than anyone wants. Reality is a strange bird, sometimes graceful and beautiful, sometimes dark and predatory, but reality never the less

exbrnxgrl

coffeepleez,

No we don't know for sure but prior evidence does not point to mastectomies being helpful for stage IV. That doesn't preclude future studies from showing that they may be helpful. I never said that mastectomies aren't possibly helpful, simply that not enough evidence currently exists to support that. All I'm saying and have said many times is that the jury is still out. That is not arguing at all but simply looking at the current state of things. Reality is not always pleasant.

Clearly, I am not giving you what you need, though you have my full support with whatever personal choices you make. As to folks here who have responded to you, all I have to say is that surveying folks on a bc forum is a good starting point but in the end, simply anecdotal evidence which is not enough for me, the plural of anecdote is not data,but if it works for you, fabulous! I have lived an almost normal life with mbc for nearly a decade. I wish at least quadruple that time for you 😘 Goodbye, friend.

exbrnxgrl

I agree! I have also blocked you so you no longer have to worry as I will not see your posts nor be tempted to respond. I am sorry if I caused you distress as that was never my intention.

DivineMrsM

It's offensive to me to see someone describe having a mastectomy as a “privilege". A part of your body, one that for many women help define their femininity, is cut off because it is diseased and you're going to go around thinking what an “honor" that is? like you abide by some kind of third world patriarchal philosophy? That's pretty shitty.

I fail to comprehend how that is any kind of “Easter encouragement”.

amontro

DivineMrsM -Thank you for the Easter Encouragement thread.

I was diagnosed over 12 years ago, first with a serious mammogram, and then with a single radical mastectomy, with radiation, then chemo as a follow up. Many lymph nodes were removed as well. I had a very bad time dealing with "a hole in my chest" for three years. I was approved then for a reconstruction with a plastic surgeon who's goal it was to work with the beautiful people. He was new and he was in the process of opening a Manhattan office and one in Brazil. I found BC.org toward the end of my ordeal with him, and tried to salvage my dignity, but too late. He wanted to even me up with my good breast, but I stopped him just before I was wheeled into the OR, thanks to BC.org. I treasure my remaining breast as it is to this day.

Now, I am still lopsided and my reconstruction looks like a sideways lump. However since I had a great surgeon (who didn't think I'd survive), I have had no changes in my mets all these years, and currently on the same herceptin that I started with. There is no "privilege" .

I live day by day trying to be a better person, to respect others, and help when I can. It's amazing how you can feel when you can take the focus off of yourself to help someone else.

Anonymous

There are multiple threads around, some of which have been on the front page in the last week, of 5 or 10 year survivors. Why start another thread?

Anonymous

it's like this - we can want whatever medical treatment we want. If we can't find a doctor to go along with it, then we are out of luck. And surgeons are going to be guided by current research when they decide when and on whom to operate.

So your arguments in favor of mastectomy need to be made to your surgeon - not to us.

The ladies here have explained the reasoning of the surgeons and the current state of the science. We don't control what treatment you get. The doctors and the science control that.

Find a surgeon who agrees with you and you will have what you seek.

PS - Not to convince you of anything but just to provide factual info - There has been more than one study of whether not mastectomy is beneficial in stage IV. Even the most favorable of those that I am aware of is “lukewarm" and says more research is needed and that studyapplied only to HER-2 positive women.

But again - finding a doctor who agrees with you is the key to getting what you want.

Beesie

I am not Stage IV and therefore should not be posting here, so I will pop in for this one post only and then exit.

Coffeepleez, are you looking for a MX prior to systemic treatment or would you be satisfied with having the MX after chemo? These days neoadjuvant chemo is given to most non-Stage IV patients who have large and/aggressive cancers, so asking for surgery prior to chemo very much goes against current treatmenr guidelines, whereas you might have more success if you push for the surgery after having chemo.

I'm a research junkie so I'll post what I've found. Certainly the studies done on surgery for those who are Stage IV de novo have included many more than 200 women, and it appears that this is very much an area of interest. Unfortunately the results to-date are mixed so there is no clear consensus on what is the right approach. But the mixed results do suggest that there likely are some surgeons and MOs who would be agreeable to surgery.

Treatment of Primary Breast Tumors in De Novo Metastatic Breast Cancer (December 2014) https://www.hematologyandoncology.net/archives/dec...

"Conclusions The role of local therapy in patients who present with de novo metastatic breast cancer remains controversial. The bulk of the larger retrospective studies suggest a benefit to such an approach, although smaller, single-institution studies suggest that, when one controls for tumor- and treatment-related factors, there are no benefits from locoregional therapy. Two randomized trials recently have been presented that shed further light on this topic and find no overall benefit from locoregional therapy in this setting, although the Turkish trial suggested a possible benefit in those with bone-only disease. Neither of the recently presented international trials both maintained the primacy of systemic therapy (ie, giving systemic therapy upfront, then selecting patients who do not progress for consideration of locoregional therapy) and administered modern systemic therapies. The current controversy surrounding this topic supports the continued accrual to ongoing trials in both the United States and other countries. Now more than ever, we should have equipoise on this issue, and we should redouble our efforts to complete the ongoing randomized studies on this topic."

Could local surgery improve survival in de novo stage IV breast cancer? (September 2018) https://bmccancer.biomedcentral.com/articles/10.11...

"Conclusions In summary, this study demonstrates a survival benefit following local surgery in de novo stage IV breast cancer patients. Stratified survival analysis showed significant survival benefit in patients with bone metastasis only (with primary tumor ≤5 cm), those with soft tissue metastasis, and those with ≤3 metastasis sites. Thus, in de novo stage IV breast cancer patients who satisfy any of these criteria, it would be reasonable to combine local surgery with systematic therapy."

Locoregional therapy of the primary tumour in de novo stage IV breast cancer in 216 066 patients: A meta-analysis (February 2020) https://www.nature.com/articles/s41598-020-59908-1

"Concluding remarks It appears from several retrospective individual studies that patients with metastases limited to bone, HER2-positive disease, favourable response to primary systemic therapy, and a resectable primary tumour are most likely to derive significant survival benefit from LRT. Conflictingly, surgery did not improve overall survival in some patients with bone/soft tissue metastases, and one prospective trial showed a greater survival benefit for HER2-negative patients, hence more prospective information is required. Prospective trials also indicated favourable outcomes for patients with a positive response to systemic therapy and good primary resectable margins.

Further research is required to establish the biochemical basis by which primary tumours influence the location, development and growth of metastatic tumours. This information should aid in the identification of patients who would most benefit from LRT. It has been suggested that CTCs can be used to stage metastatic disease and characterise it as indolent or aggressive; this could be a novel mechanism to identify patients with indolent disease and who will most likely to benefit from primary LRT.

Stage IV breast cancer survival continues to improve due to the emergence of novel targeted therapies. Therefore, LRT of the primary tumour may achieve additional survival benefits in patients who respond well to initial primary systemic therapy, especially with HER2- and/or ER-positive disease confined to the bone. Patients with extensive visceral metastases and/or triple negative disease with poor systemic response are unlikely to derive a survival benefit from LRT of the primary tumour, but LRT has the potential to achieve a palliative role."

Study Finds No Benefit to Surgery, Radiation in De Novo Stage IV Breast Cancer (May 2020) https://www.cancernetwork.com/view/study-finds-no-...

"Surgery and radiation to a breast cancer tumor does not extend overall survival (OS) compared with systemic treatment alone in women with stage IV disease, according to data from the ECOG-ACRIN E2108 trial, presented ahead of the 2020 ASCO Virtual Scientific Program.1

"Based on the results of our study, women who present with a new diagnosis of breast cancer already in stage IV should not be offered surgery and radiation for the primary breast tumor with the expectation of a survival benefit," Seema A. Khan, MD, the Bluhm Family Professor of Cancer Research and professor of surgery (breast surgery) at Northwestern University's Feinberg School of Medicine, said in a news release.2 "When making these decisions, it is important to focus energy and resources on proven therapies that can prolong life.""

Locoregional Surgery in Metastatic Breast Cancer: Do Concomitant Metabolic Aspects Have a Role on the Management and Prognosis in this Setting? (September 2020) https://www.mdpi.com/2075-4426/10/4/227/htm

"Conclusions In breast cancer, the identification of the most appropriate therapeutic strategies and their implementation in clinical practice appear challenging in the management of metastatic breast malignancies. However, the data available appear promising in MBC, although some are preliminary or obtained in experimental models. Regarding the surgical aspect, studies are not conclusive as to the improved survival rates in MBC patients undergoing resection of the primary tumor with clear margins. Interestingly, the analysis of the metabolic and clinical phenotypes—including modulation of adipokines (i.e., adiponectin) and miRNAs regulating metabolism—underlying the development of metastatic disease, which remains the principal cause of breast cancer-related deaths, may lead to the identification of more effective targeted approaches to prevent and treat metastases. According to the implementation of novel personalized treatments, surgical and metabolic strategies, when synergic, appear to be a promising, targeted, and integrated treatment approach to breast cancer. Extensive clinical evidence is expected to clarify these important aspects of MBC."

Aggressive Local Treatment Improves Survival in Stage IV Breast Cancer With Synchronous Metastasis (November 2020) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC77064...

"In conclusion, our study suggests that surgery to primary sites may offer better survival benefit than radiotherapy alone in patients with de novo stage IV breast cancer. Additionally, additional postoperative radiotherapy further improves outcomes after primary tumor removal. However, due to lack of important information regarding tumor biology, systemic treatments, and site of metastasis. This study does not provide reliable data on the real impact of local treatments for this patient subset. According to the guidelines from the European School of Oncology and European Society for Medical Oncology, local treatment can only be an option in highly selected patients. Therefore, more prospective studies are needed to investigate the role of local management in patients with de novo stage IV breast cancer."

DivineMrsM

Coffeepleez, to me, it's a very general statement to say, “I think it is barbaric when doctors say you have no choice but to only take some horrible medicines with horrid side effects and we won't ever operate because of some study with 200 women that was once conducted.“

Who are these doctors you mention? Because my oncologist never said such a thing to me. Neither did my breast surgeon. And that was 10 years ago. My doctors have always been respectful in their dealings with me. None have ever told me “you have no choice."

I was diagnosed with metastatic bc from the start and go to a large city cancer center in PA. I first had chemo to shrink the tumor and then had a lumpectomy. I had many discussions with my doctors and was given numerous choices before any of that happened, and it was up to me to decide my course of treatment. One reason I was okay with chemo is because a very close relative diagnosed with a different form of terminal cancer had exceptional response to chemo. By that, I mean 40 years later, he is still living. So I saw chemo as literally life-saving medicine.

I've been at this mbc thing for a long time. My experience has been that there isn't any one fool-proof approach to dealing with mbc. It's not a one-size-fits-all. The specific route I've taken may not work for the next woman, and so on.

This forum is a great resource to gain insight, advice and support in matters relating to bc and mbc that can be applied to what we personally are going through. If you feel your current doctor(s) give you no choice, you have the option to seek different doctors. Wishing you the best with whatever it is you're dealing with.