HLB, I can tell you how far I had to progress to have recognizable symptoms, with no tumor markers being checked. Far enough that my liver was so full of tumors I could not start with hormonal therapy but had to go straight to chemo. I'm unhappy that I had to lose my hair because of this, but then again I did get NEAD. Artistatheart, Taxol is an intravenous chemo; I had infusions three weeks on and one week off. Four to six cycles were planned. After three cycles the PET-CT showed NEAD. Taxol was a double-whammy to the cancer because it also punted me into menopause. We did two more cycles for good measure, then stopped before the developing neuropathy could cause permanent problems.

Regarding the alternative anesthesia, there is a member here called solfeo who describes how they used enough propofol to put her all the way out and then did a pectoral block, instead of the usual anesthesia, for her breast surgery. (Just do a search to find more.)

Thank you for posting this report. I was dx in May 2015 at first they said stage 2    Scheduled me for mastectomy  . I insisted on a pet scan . PS they found 2 bone mets.  Surgery off the table. First  oncologist said  no one will do a mastectomy on stage 4 only a butcher I asked about radiation, cyber knife he just laughed  he was horrible no bedside manner  he actually asked me how old do you think you will live to and being a very optimistic person  I said given a choice in my 80's and he just laughed and said wont happen.  I was placed on Femara and Ibrance  and after one month the breast tumor which I could feel started shrinking and when I convinced him to do a pet scan at 3 months everything was shrinking fast.  At that point I had done my research  found new doctors and had CyberKnife to the 2 bone mets and bilateral  mastectomy 7 weeks ago  clear margins and negative nodes had a pet scan last week and a present  its clear NED ! The two bone mets that were cyber knifed are dead . I pray that this remains  but I felt that I was healthy to have the surgery and by the time the results from all these trials on mastectomy for newly dx stage 4 with limited bone mets came out it could take years and years.    Thank you again for posting this ! 

My oncologist was more supportive of the idea of surgery than my BS, but he got her on board with the idea and I had a unilateral MX last month. It just makes logical sense to me that reducing the burden of disease will be easier on my body and perhaps I can get my immune system strong enough to help fight off cancer cells too.

Hi everyone,

Although I've posted a couple of critiques and background information on this study, I believe that each of us must make personal decisions about what we can and can't abide in medical interventions.

It's stressful to live with active, visible cancer.

I know as I've had tumors on my unreconstructed chest wall for over 25 years now.

In the early years, we tried surgically removing them, but more always popped up. So next came radiation to a very wide field. It didn't get rid of all the tumors and those left began growing again within weeks. I tried a variety of topical treatments, including more surgery and alternative approaches. Zip. And some chemotherapy that beat me down, not the cancer. The surgery and radiation damaged my chest wall and nerves. I live with the long term effects of medical treatments.

Now, I just live with those tumors and other cancer in my body.

But it is stressful and I've engaged a wide range of mind-body practices to live peacefully and well with the metastatic disease that's now in many regions of my body. These practices have also helped me to live well while dying.

To be clear, I don't expect anyone else to live like this. My doctors and I didn't think I had many options, so I needed to accept and adapt. Still do.

For many, mastectomy or surgical removal of evident disease is a sensible choice. We aren't just medical/material beings, but multi-faceted human beings with different stress tolerance.

So, I say study the studies and statistics, but recognize that you are an "n of one" as they say. You are an individual not a statistic and you must go for the choices that make sense to you...sometimes against the best medical advice.

healing regards, Stephanie

Hi Mamalala,

The Eurekalert link worked for me, so I've just copied and pasted the entire press release below.

Maybe your doctors don't know of the study, because it was mainly funded and done in Turkey? Maybe they're calling it "The Turkish Study"? Or because it's so small, just 274 participants? Or that the statistical findings really don't change the standard of care? Or that it's newly released?

Just a few thoughts. Be sure to read the critique I posted on June 9 and my own thoughts on June 10.

Definitely good for your mental health to have it removed. Worry and fear are psychic pain and you deserve relief from that, just as you do from physical pain!

Mamalala, you may need to argue to get what you want and need. I hope you will persist and prevail!

Warmest of healing regards, Stephanie

xxx

PUBLIC RELEASE: 2-JUN-2016

International trial changing standard of care for advanced breast cancer

UNIVERSITY OF PITTSBURGH SCHOOLS OF THE HEALTH SCIENCES

PITTSBURGH, June 2, 2016 - Surgery to remove the primary tumor in women diagnosed with stage IV breast cancer, followed by the standard combination of therapies, adds months to the patients' lives, compared with standard therapy alone, an international clinical trial led by a University of Pittsburgh Cancer Institute (UPCI) professor revealed.

The results of the phase III randomized, controlled trial will be presented Saturday at the American Society of Clinical Oncology (ASCO) annual meeting in Chicago. The study was selected for the society's "Best of ASCO," an effort to condense the research "most relevant and significant to oncology" into a two-day program to increase global access to cutting-edge science.

"Our findings will change the standard of care for women newly diagnosed with stage IV breast cancer," said principal investigator Atilla Soran, M.D., M.P.H., clinical professor of surgery, University of Pittsburgh School of Medicine, and breast surgical oncologist with UPMC CancerCenter. "We've shown that surgery to remove the primary tumor--either through lumpectomy or mastectomy--followed by standard therapy, is beneficial over no surgery."

Dr. Soran began the trial in 2007, ultimately recruiting a total of 274 women newly diagnosed with stage IV breast cancer from 25 institutions. Half the women received standard therapy, which avoids surgery and consists of a combination of chemotherapy, hormonal therapy and targeted therapy, while the other half first had surgery to remove their primary breast tumor, followed by the standard therapy.

At about 40 months after diagnosis, the women who received the surgery plus standard therapy lived an average of nine months longer than their counterparts who received standard therapy alone. Nearly 42 percent of the women who received surgery lived to five years after diagnosis, compared with less than 25 percent of the women who did not receive surgery.

The trial also showed that surgery in younger women with less aggressive cancers resulted in longer average survival than in women with more aggressive cancers that had spread to the liver or lungs.

"Our thinking is similar to how you might approach a battle against two enemies," said Dr. Soran. "First you quickly dispatch one army--the primary tumor--leaving you to concentrate all your efforts on battling the second army--any remaining cancer."

###

This research was primarily funded by the Turkish Federation of Societies for Breast Diseases. The study received scientific advisement from UPMC and assistance with statistical analysis from epidemiologists at the University of Pittsburgh Graduate School of Public Health.

About UPCI

As the only NCI-designated comprehensive cancer center in western Pennsylvania, UPCI is a recognized leader in providing innovative cancer prevention, detection, diagnosis, and treatment; bio-medical research; compassionate patient care and support; and community-based outreach services. Investigators at UPCI, a partner with UPMC CancerCenter, are world-renowned for their work in clinical and basic cancer research.

http://www.upmc.com/media

Disclaimer: AAAS and EurekAlert! are not responsible for the accuracy of news releases posted to EurekAlert! by contributing institutions or for the use of any information through the EurekAlert system.

I was diagnosed de novo with mets to liver and possible met to bone in January 2016. Surgery is on the table, but only after we see if we can get the tumors smaller with targeted therapy. Neoadjuvent therapy is the standard of care in many cases now, even when surgery is definitely part of the treatment plan. Neoadjuvent therapy means shrinking the tumor with chemo/hormonal treatment before surgery. There are solid studies that show improved outcomes in certain cases with neoadjuvent therapy.

My oncs have told me that they will definitely be considering surgery if I get rid of the mets with the current treatment, but it is just an option. We'll weigh the risks and the benefits when we get there. As we know, with stage IV we're all flying by the seat of our pants.

This study is interesting and I am so glad it was shared, but one study means nothing. I've seen studies that suggests that if you don't get everything out with surgery, removing the primary tumor provokes growth of the metastasis. It's like the satellites feel the loss of the primary tumor and it provokes their growth.

It takes just a small colony of a certain type of cancer cells (cancer stem cells) to initiate metastasis. There are so many cancer cells in my body. it doesn't seem like something I can fight by removing one or two visible tumors in my breast. My sense is that I need fight the metastasis systemically.

Aggressive measures like surgery weaken my body, increase stress and disrupt my anti-cancer regime (diet, exercise).

There are better, more gentle, system-wide treatments in the pipeline that may be more effective to suppress metastasis. My primary strategy is to keep myself strong, healthy and whole until they figure something out. We're in a time when several new treatment options are appearing every year. so that is something to consider as you weigh surgery.

From what I have learned I am considering surgery, but no sold on it. We'll see how I am doing after a two or three more scans. I don't see this one study as conclusive.

>Z<

Maybe soon we will discover improved outcomes, even and especially in Stage IV cases, with perhaps a three-step initial treatment: 1. neoadjuvent therapy to shrink the primary tumor(s), 2. Ketoraloc/torodol before surgery for recurrence prevention, and 3. surgery to eliminate the primary tumor(s) burden.

Patients then receive continued care (chemotherapy and/or radiation), depending upon their situation.

I hope that all can achieve NED status for so long that the medical community begins to consider "remission" and "cure" as attainable in our lifetime.

Remember that AIDS was once considered a death sentence and now, if treated early with new protocols, it is considered chronic, with some patients now in remission or close to it. I know that's a lot of qualifiers, but progress.

Wishing everyone all the best,

Mominator

I was diagnosed StIV right out of the gate.  IDC, grade 3  went from the size of a grape when I found it to the size of a large lemon 3 weeks later at my yearly exam to the size of a grapefruit ten days later when I started chemo.  I did A/C, then taxol, and fought for and got a double mastectomy, followed by radiation (during which I was on Xeloda).  Then Ibrance/Femera (plus x-geva and zometa).  I also use marijuana both medicinally and recreationally (hey, a gal's gotta have some fun).  I've had three scans and all have shown me to be NED.  I told my Dr. the day she told me it was stage 4 that my plan was to go balls to the wall, and that is just what we've done.  This study makes me so happy--I sent a copy to my surgeon, who tried to talk me into not doing a mastectomy.

I realize this is an old-ish thread, but found it relevant to my situation and thought others might as well. I was just diagnosed stage IV de novo, 2 small mets to the liver, E/P-, HER2+. My tumor load is low, and after one treatment cycle (TCHP), I actually can no longer feel the tumor I originally found in my breast and the nodes are shrinking as well. My surgeon is recommending a double mastectomy and radiation as soon as I finish my 6 cycles of TCHP, while my oncologist wants to wait and see what the cancer does first and thinks I should complete the year of pertuzumab/herceptin before surgery is on the table. I'm going to get a second opinion at MD Anderson (with both my oncologist's and surgeon's blessing). I'm BRCA1+, so I know that factors into the equation as well.With so much conflicting information out there, it's a tough call.

livebig- I will definitely let you know! I'm personally leaning towards the mastectomy sooner rather than later because of my BRCA1+ mutation, which increases the likelihood that I'll develop new breast cancer disease at some point. No thank you! One type of breast cancer is more than enough. So, they need to go, but the question is when. Please keep me posted on how they approach your liver mets. Stay in touch and best of luck to you as well

I was not stage iv de novo, rather stage 1 then metastatic. But I had a breast tumor at the same time as the liver mets, and my onc thinks the breast tumor was metastatic disease. Like AnimalCracker's onc, my onc used the easily felt breast tumor to monitor my response to treatment. The breast tumor disappeared on taxol, and has not been seen or felt since -- not on exam, PET/CT, breast MRI, or ultrasound -- even though the liver tumors remained (visible but smaller and dormant for a while and then recently active again). Just thought I would throw that out there because it supports the idea of giving systemic treatment a chance in some cases. Of course the decision has to be very individualized.

MommyErin, we are almost in the exact same situation. I was diagnosed March 13th, found possible liver mets from MRI and CT on March 29th. Starting TCHP this coming Thursday, 4/6. I have a liver biopsy Tuesday to confirm the liver mets. Not sure if surgery is still on the table or not, but I do want a second opinion at MD Anderson. How did you start that process and find someone to see there? Thanks!

Divine.. thank you for guiding me to this thread! I was diagnosed de novo in March 2015 (ER/PR+, HER2-, mets in my T3, tumors in breast). No surgery (except oopherectomy- I'm sure I spelled that wrong), no chemo (besides letrozole and Ibrance),no radiation... Last week at my oncologist appointment, he said that since I have oligometastatic disease (just in one very faint spot in my spine), I could have the option of having a lumpectomy (if they can even find the 3 tumors - thank you letrozole/Ibrance for shrinking) or double mastectomy plus radiation or gamma knife to my spine. I had found one research paper on this and had given it to him a year ago. He obviously never forgot it. He always said "but that was only one study". Now he's saying that maybe I was ahead of the curve and that is how treatment might go for those ogliometastatic disease. I wanted to get rid of the "mother ship" from the beginning and now he's saying it's a possibility. I DON'T KNOW WHAT TO DO! So much going through my head.... thank you for all the information on this thread! I'm going to be reading thoroughly!

Stefanie, with such minimal disease, I wonder if local treatment of the liver met would be considered for you.

Depending on the F1 results, he wants the tumor In place so he can see the treatment working(or not). I don't totally disagree, but if the treatment doesn't get rid of it completely, I would ask for it to be locally treated. Still waiting for the call from sceduling.