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Old 05-06-2008, 09:14 AM   #1
Joan S.
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Surgery for Stage IV?

Ladies,
I need your advice. I was diagnosed with stage IV a little over a year ago. I was on Herceptin and taxol for about 7 1/2 months. After a very good outcome and some severe neuropathy, I decided to try herceptin and aromasin. Thank g-d the disease remains stable and even improving. I have a local onc but also confer with an onc at Lurie Cancer Center. Recently, the onc at Lurie presented my case at a interdisciplinary breast board. They suggested that surgery might improve my longevity. My local onc is against it. He is very conservative and says that it might affect my immune system while I am recovering and why do it if I am stable.
Does anyone one have any experience with this? Has anyone had a positive outcome with surgery with Stage IV ?
If I do go ahead with it, how do I deal with my local onc afterwards. This however, is the least of my worries. My options are limited with other oncs in the area but that's a whole other story.
Thanks for your help. I am always amazed by your courage and wealth of knowledge. This is an amazing site.
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Old 05-06-2008, 09:51 AM   #2
SoCalGal
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What kind of surgery? Many woman have surgery depending on the type and location and if your disease is stable except for this one area. One example is brain surgery. Another is liver. I am curious what kind of surgery it would be.
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 05-06-2008, 10:07 AM   #3
Joan S.
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Surgery for Stage IV?

Oops! It would have been helpful for me to mention that they suggested a mastectomy. If I had a mastectomy I would hope I would be a good candidate for reconstruction as well.
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Old 05-06-2008, 12:38 PM   #4
hutchibk
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I would take the reasons that your local onc is anti-surgery and start researching for compelling info that might counteract his opinion. Call the Lurie onc and tell them what he says and ask them their opinion. If possible, ask them to call him and explain that his thinking is flawed about the mastectomy. He might learn something new because of his experience with you that helps future patients. Become an informed and compelling patient. There may be current research that flies in the face of his opinion, and then you can tell him what you decide based on that. If the Lurie onc and your research convince you that it is not an additional risk to your immune system to have the surgery, then use your persuasive and charismatic powers to assure your local onc that you understand his thinking, but that you have weighed the risk vs benefit ratio of the surgery and are willing to take the risk, at the added benefit that it may also help others in the future...

But be sure you get all your ducks in a row and feel confident about what you learn before you move forward. I would absolutely start with the Lurie onc. And tell them that you are afraid of angering your local onc. Be upfront about that. They should be able to help you present the info to him in a persuasive and compelling way.
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 05-06-2008, 12:59 PM   #5
Lani
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thought this might help

#1
Lani
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study seeks to determine optimal tiiming for primary tumor removal in Stage !Vs
1: Ann Surg Oncol. 2008 Mar 21 [Epub ahead of print]

Timing of Surgical Intervention for the Intact Primary in Stage IV Breast Cancer Patients.

Rao R, Feng L, Kuerer HM, Singletary SE, Bedrosian I, Hunt KK, Ross MI, Hortobagyi GN, Feig BW, Ames FC, Babiera GV.
Division of Surgical Oncology, The University of Texas Southwestern Medical Center, 5323 Harry Hines Blvd, Dallas, TX, 75390-9155, USA.
BACKGROUND: Recent studies demonstrate improved progression-free survival (PFS) and improved overall survival (OS) with extirpation of the primary tumor in breast cancer patients who present with metastatic disease at initial diagnosis. The subset of patients who would most benefit from surgery remains unclear. This study evaluates the pathological attributes and optimum timing for surgery in patients who present with stage IV breast cancer and an intact primary. METHODS: Retrospective, single-institution review of all breast cancer patients between 1997 and 2002 presenting with an intact tumor and synchronous metastatic disease. Information collected included: demographics, tumor characteristics, metastatic sites, type/timing of surgery, and radiation/systemic therapy received. Patients initiated treatment within 3 months of their diagnosis. Patients were divided into three groups based on time interval from diagnosis date to surgery date. Disease progression and vital status at last follow-up were evaluated. Analysis of metastatic PFS (defined by progression of systemic disease) benefit in relation to surgical timing was performed. RESULTS: Multivariate analysis revealed patients having only one site of metastasis, negative margins, and Caucasian race had improved PFS. Further analysis revealed non-Caucasian patients more often underwent surgical intervention for palliation versus surgery for curative intent, possibly explaining their worse outcome. Patients who underwent surgery in the 3-8.9 month or later period had improved metastatic PFS. Conclusions: Surgical extirpation of the primary tumor in patients with synchronous stage IV disease is associated with improved metastatic PFS when performed more than 3 months after diagnosis. Resection should be planned with the intent of obtaining negative margins.
PMID: 18357493 [PubMed - as supplied by publisher]
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Old 05-06-2008, 01:33 PM   #6
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Joan, I hope you get this reply. It looks like things have changed a little since I posted last.

Anyway regarding your question on masectomy surgery. I see a local onc. and I also see an onc. at MD Anderson in Orlando. I had a masectomy over 2 years ago, and when I went to see the onc. at MD Anderson she asked me why I had a masectomy. I was floored and the only answer was "they told me I needed one". According to her, she felt since I was a stage IV and the cancer had already spread beyond my lymph nodes , and I was getting treated, I shouldn't of had one. The treatment will kill the cance no matter where it is.

So to answer your question; if I had to do it all over again, I would not of had a masectomy because what the onc. from MD Anderson said made sense to me. You need to trust your onc.

Hope this helps.

-Verna
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Old 05-06-2008, 06:57 PM   #7
Kim in DC
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You should try to email Alaina. If I remeber correctly, she was diagnosed Stage IV and only able to keep her mets stable after the surgery


Kim
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8/98 dx right breast
5/2003 tram flap right breast
8/2004 dx new primary left breast with inflammatory bc
er/pr-, her2neu+++
8/19 taxotere and herceptin
1/15/2005 Navelbine/Herceptin
4/2005 radiation and Herceptin
5/15/2005 Herceptin alone
2/12/2008 skin biopsy positive
2/14/2008 met to sternum, possibly right breast
2/27/08 Start omitarg, herceptin, taxotere trial
3/17/08 Kicked off trial because I started too close to my last herceptin
3/19 start tykerb xeloda
Right breast confirmed met
5/15/08 skin mets gone, no hypermetabolic activity in breast, sternum healing
8/24/08 scans still look good. sternum still active with scarring. No evidence of progression
10/08 Progression in sternum
12/08 Start TDM1 trial
1/09 Scans show stable
12/09 1 year on TDM1 still stable
10/10 progression in chest and liver
11/10 false positive of liver mets; tykerb and herceptin
4/11 Tykerb/Herceptin/Xgeva
4/11 Rads to Sternum
5/12/12 NED Herceptin/Zometa
3/16/19 still NED Herceptin/Zometa very 6months
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Old 05-06-2008, 07:06 PM   #8
Becky
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There are studies to support the fact that oncologist's are changing their thinking on breast surgery (lumpectomy or masectomy) on Stage 4 women.

First, the metastatic disease needs to be contained (usually) to one area. Basically, they don't want you loaded with disease.

Second, they want the mets to be stable via treatment (that you are or have responded to chemotherapy).

Getting the primary tumor removed does improve the chance of getting to and possibly staying NED.

The thinking has changed because Stage 4 women can and do do very well for many, many years. Long ago, getting mets was a true death sentence, but that is old thinking. A stage 4 diagnosis does not mean that any longer.

I would continue to investigate surgical options and get even another opinion if you are uncertain. There are studies that show it can throw the odds in your favor even more.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 05-14-2008, 09:00 PM   #9
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Surgery for Stage IV?

Hi Joan,

I have been lurking on this website, and wanted to share my experience and research with you. I was diagnosed in February 2007 with inflammatory breast cancer and widespread metastases (many bones, liver, and lots of nodes). I was treated with TCH, and had a great response. My first follow-up PET/CT after three months of treatment showed NED. I had three more months of TCH, and then continued on with Herceptin alone as well as Femara, Zometa, and Zoladex injections. At my oncologist's strong urging, I had a mastectomy and axillary dissection at the end of September 2007. I then had radiation. My last scans in March 2008 still showed NED.

I agonized over the decision of whether to have surgery and researched it quite a bit. There are many studies that show a survival advantage for patients with metastatic breast cancer who have their primary tumor removed. And, according to my oncologist (and my own research), there are no studies to the contrary. Unfortunately, all of the studies are retrospective. This means that there could be a selection bias. For example, the doctors could have selected only the patients they thought would do well to have the surgery. The studies attempted to control for this, but, according to my oncologist, this cannot be completely controlled for. One point that I found encouraging was that surgery without negative margins was not beneficial. If the surgery itself was not helpful, it should not have mattered whether the margins were positive or negative.

Here is a list of some of the studies and the databases they used: (1) Lang, et al, Impact on overall survival of primary tumor extirpation in breast cancer patients who present with stage IV disease, Journal of Clinical Oncology, 2007 ASCO Annual Meeting Proceedings Part I. Vol 25, No. 18S (June 20 Supplement), 2007: 598 (MD. Anderson database 1997-2002); (2) Gnerlich, et. al., Surgical Removal of the Primary Tumor Increase Overall Survival in Patients with Metastatic Breast Cancer: Analysis of the 1988-2003 SEER Data, Annals of Surgical Oncology (published online May 24 2007); (3) Rapiti, et. al, Complete Excision of Primary Breast Tumor Improves Survival of Patients with Metastatic Breast Cancer at Diagnosis, vol. 24 Journal of Clinical Oncology (June 20, 2006) (Geneva Cancer Registry between 1977 and 1996); (4) Khan, et. al., Does aggressive local therapy improve survival in metastatic breast cancer?, Surgery 132:620-627 (2002) (National Cancer Data Base between 1990 and 1993).) The ultimate conclusion of each analysis was that surgery with negative margins significantly improved long term survival. (You could find most of them by searching in Google Scholar.) There have been more since I last researched the issue. Also, there is a presentation on this topic at www.breastcancerupdate.com. If you click on BCU for surgeons, there is a lecture by someone named Morrow on this topic. I think there is another lecture by her somewhere on the internet that I listened to, but I don't recall where it was.

Another important point to consider, and emphasized by my oncologist, is that even if it does not prolong survival, the surgery could help local control. This means you could avoid needing treatment for problems caused by cancer in your breast.

I believe (but I am not certain) that my doctor said I would be disqualified from having the surgery if I had brain metastases or if my PET/CT before surgery showed a new area of metastases.

I am being treated at UCSF, a major teaching hospital.

Good luck with your decision! I hope I succeed in actually posting this.
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Old 05-15-2008, 06:12 AM   #10
Joan S.
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Surgery for Stage IV Breast Cancer

Dear "Unregistered"
Thank you so much for your very thorough response. It was extremely helpful.
I found it interesting that you, like me, had widespread metastatic breast cancer and they still recommended it. The Morrow interview recommended it for limited metastatic disease. I have an appointment with a surgeon at Robert Lurie Cancer Center concerning this issue and I will bring up this point.
Thank you!
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Old 05-15-2008, 09:10 AM   #11
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Unregistered,

I am in the Bay Area. I have Kaiser but I have seen Dr. Benz at UCSF. I am wondering who your onc. is? He/She sounds very good. I may go back to UCSF for follow up since I am still dealing with a local recurrence.

Thanks,
Tonya
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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Old 05-15-2008, 11:29 AM   #12
ElaineM
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Surgery Stage 4

Hi,
I would seriously consider what the tumor board suggested. A tumor board consists of 4-6 experts from various specialties of doctors who treat cancer. They look at all the test results and films and discuss the patient's situation. They make their recommendations based upon what might give the patient the best chance for survival or recovery. You might want to make an appointment to talk to one of the doctors who participated in your tumor board discussion to get more information and ask about the reasons for their recommendation. I wouldn't worry if my oncologist did not approve. He or she will get over the shock. It is my body and I am entitled to take whatever action I need to take to improve my health. I would make that appointment. It pays to be an assertive proactive patient.
There was research about surgery for stage 4 breast cancer. I remember reading somewhere that it may extend survival. Maybe you would like to do a search on the internet and read the results.
Good luck. Hang in there.
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ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
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Old 05-16-2008, 10:33 AM   #13
Lani
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the latest

ABSTRACT: Association of Surgery With Improved Survival in Stage IV Breast Cancer Patients
[Annals of Surgery]
Objective: This study aims to exam the role of surgery in patients with stage IV breast cancer.
Background: Historically, women who present with metastatic breast cancer are not offered surgical treatment. However, recent reports indicate that surgery may improve outcome. Using a large database of women whom presented with stage IV breast cancer, we compared outcome of patients who had resection of their primary cancer to those who did not.
Methods: Of 16,401 patients, 807 had stage IV disease at presentation, and 395 survived >90 days and were included in this analysis. Clinical and tumor characteristics, surgical treatment, and survival were compared for the surgically versus nonsurgically treated patients.
Results: Two hundred and forty-two patients (61.3%) had definitive surgery for their primary tumor and 153 (38.7%) did not. Patients who underwent surgery were significantly older, were more likely to be white, more often had hormone receptor positive disease, had small primary tumors, and had fewer metastatic sites and less visceral involvement. The median survival of surgically treated patients was 27.1 months versus 16.8 months for patients without surgical resection (P < 0.0001). In multivariate analysis, which included surgical treatment, age, race, estrogen and progesterone receptor status, number of metastatic sites, and presence of visceral metastases, surgery remained an independent factor associated with improved survival (P = 0.006).
Conclusion: Patients with stage IV breast cancer who had definitive surgical treatment of their primary tumors had more favorable disease characteristics. However, after adjustment for these characteristics, surgical treatment remained an independent factor associated with improved survival.
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Old 05-18-2008, 09:50 PM   #14
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UCSF oncologist

Hi Tonya,

Sorry it took me so long to get back to you. My oncologist at UCSF is Dr. Hope Rugo. She is extremely smart, and very up to date on everything, particularly HER2 positive cancer. She understands the underlying biology, so she also is able (I think) to make educated guesses, where needed. Additionally, she is in charge of the clinical breast cancer trials at UCSF. She would be an excellent person to see for a second opinion, if you can get in to see her. Please let me know if you have any further questions. I will register soon, so that you can send me a private e-mail.
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Old 05-19-2008, 08:52 PM   #15
Joan M
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Joan,

Here's an audio from the Nov. 2007 second annual MBCNetwork conference which discusses surgery for metatstatic breast cancer. It covers both surgery for both an initial diagnosis of metatstatic breast cancer, which is your concern, and surgical options form a later diagnosis of metatstatic spread. This might give you some further insight.

The conference was held at MD Anderson Cance Center in Texas.

Best, Joan

"Surgical Management of Metastatic Breast Cancer"
Gildy Babiera, MD, Associate Professor, Surgical Oncology, UT M. D. Anderson Cancer Center
http://www.mbcnetwork.org/uploads/au...7-rm-1-4-a.mp3
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 05-23-2008, 08:27 AM   #16
fullofbeans
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The way I see it if you can surgically remove it: then do, otherwise it simply continues shadding cells where you do not want to. However I can see that the stress of the op is obviously not hepful but lets face it whilst on chemo your immune system is not fighting much anyway.

This is my humble opinion, then again your own fear about masectomy is for you only to consider.
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35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
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Old 05-23-2008, 08:59 AM   #17
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Smile I had surgery for stage IV two years ago

Hi

I live in England and I had surgery for stage IV cancer two years ago at a hopsital in London. My local onc was also against it, but surgical prof in London said it was worth a try. And I didn't fancy dying so I did.
I had three tumours removed from sternum and my sternum removed and placed with prosthesis, some kind of metal mesh I think, and a sub 1cm tumour removed from my lung.
I then had a second dose of radiotherapy and have been on single-agent treatment with herceptin ever since. That was two years ago and currently I am NED (though due for a scan in two months' fingers crossed).
Over here surgery for stage iv isn't common but I think they should do more of it. I have had two years so far of cancer-free life and I have enjoyed every minute of it, so the pain of the op was worth it, and actually I recovered remarkably quickly. I am 45 this week.
Hope that helps you and good luck
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Old 05-30-2008, 08:56 PM   #18
Sherryg683
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There have been many articles recently about how it is beneficial to remove the tumor even if the cancer has spread. I had a lumpectomy before I started chemo, although at the time we weren't sure what stage I was then. I am glad we removed the initial tumor because I would always feel that traces of it were still there waiting to spread. sherryg683
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Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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