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Old 04-07-2015, 05:34 AM   #1
Kat77
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Question Mastectomy & Radiation with Stage 4 Diagnosis

Hi - I have been lurking since October when I was diagnosed at 37 years old with Stage 4 BC triple positive with two metastasis to spine. This online support group has been a great source of inspiration and information.

After six treatments of herceptin/perjeta/taxotere my scans were clean and a follow up MRI on breast showed nothing. Dennis Slamon for Nobel Prize!

I am continuing on herceptin/perjeta for six more cycles until next scan. In the mean time I have been advised that I should have a mastectomy of breast followed by radiation to chest and where spots were on spine. Has anyone heard of a course of action like this in a Stage 4 patient? The surgeon and radiologist are gung ho for this, my oncologist respects their opinion but is more non-committal on benefits.

My husband has been coordinating care while I receive treatment as I have 3 small children and concentrating on them and treatment. He brought up this course of action and the doctors seem to agree.

My question: Has anyone followed this treatment plan or heard of anyone who has? I felt like I was getting back some of my life after getting off the chemo but now I'm going into surgery.

Much appreciated, Kat.
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Old 04-07-2015, 05:43 AM   #2
Lauriesh
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Re: Mastectomy & Radiation with Stage 4 Diagnosis

Yes, I have heard of stage 4 women who had surgery after thier mets became Ned or stable., but they still had a breast lump remaining.
but, if there is no sign of a lump left in your breast, I wouldn't go through surgery or radiation.

I woud continue with herceptin/ perjeta indefinitely and hopefully, it can keep you Ned for years.

Laurie
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Year of Herceptin
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Old 04-07-2015, 06:10 AM   #3
Becky
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Re: Mastectomy & Radiation with Stage 4 Diagnosis

I will go look for the studies but there is a purported survival benefit to having the surgery and radiation. I would consider it. Let me look for the studies and post them. You could google yourself as well.
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Old 04-07-2015, 07:14 AM   #4
Debbie L.
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Re: Mastectomy & Radiation with Stage 4 Diagnosis

Kat, welcome. We're glad you're out of lurkdom.

I think the jury is (alas) still out on this question of local surgery for de novo Stage IV diagnoses. There have been mixed results (small benefit vs. none) in studies of this question that have reported out so far. In addition, experts have critiqued the existing results, finding various faults in the study design(s), so it's hard to know the answer. Add to that the fact that you had such a good response to your first 6 treatments, which means most of the women in these studies are not exactly the same as you. There are studies ongoing that should eventually give us some better answers, but that doesn't help you now. The two largest, most recent studies that I'm aware of were not done in the US, and other treatment was not the same as would be done in the US, so US oncologists seem somewhat split on the answer to the question. Here's an article that is fairly balanced (presenting both sides of the argument):
Any Role for Breast Surgery in Stage IV Disease? . (it's a MedPage article link -- I think you may have to register to see it, but it's free to do so)

As for radiation to the spine, I'm not familiar with doing that when there's no evidence of disease present. I thought radiation of bones was to decrease existing tumor burden, relieve pain, etc. Have others here had rads to bones when NED?

This would be a great time for a second opinion at an NCI-designated Comprehensive Cancer Center. Not only would it give you guidance now, but down the road it will give you peace of mind, knowing that you had as much information on the table as you could gather, in making this treatment decision.

Good luck, and keep us posted, okay?

Debbie Laxague
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Old 04-07-2015, 09:02 AM   #5
Kat77
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Re: Mastectomy & Radiation with Stage 4 Diagnosis

Thanks for your responses! The study in India my husband and doctors discounted because those women did not have access to herceptin. The study that is worrisome is the one where the fellow took the primary tumor from mice and reported that it made mets more likely to appear distantly. But thats mice not people.

My gut tells me to do it so I don't look back and regret not doing it.

The 2nd opinion I do need to get, excellent advice and source.

Kat
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Old 04-08-2015, 11:04 AM   #6
Jackie07
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Re: Mastectomy & Radiation with Stage 4 Diagnosis

Here's the abstract of a new report:

Gynecol Obstet Fertil. 2015 Mar 26. pii: S1297-9589(15)00056-9. doi: 10.1016/j.gyobfe.2015.02.017. [Epub ahead of print]
[Locoregional surgery for stage IV breast cancer patients].
[Article in French]
Lotersztajn N1, Héquet D2, Mosbah R1, Rouzier R1.
Author information
Abstract
Three to 6% of women newly diagnosed with breast cancers have stage IV disease. Overall survival was improved during the last few years (16-45months). The treatment of stage IV breast cancer has traditionally been palliative with surgical resection reserved for symptomatic wound complications. Since 2000, several retrospective studies have compared surgery versus no local therapy in women presenting with stage IV breast cancer with an intact primary tumor. All showed a survival advantage for the surgical cohort. However, these studies are limited by the fact that it is not possible to control for biases that led to surgical resection of the primary tumor. Several prospective randomized trials have been undertaken. We have partial results for two of them and they show no survival differences between patients who benefit from local surgery and patients who did not have surgery. However, breast surgery is at low risk of complication, if not considering psychological aspect of mastectomy, and can be proposed to patients with no progression after first chemotherapy. Conservative management can be an option, but surgery must be optimal with negative margins. No benefit of axillary surgery has been shown but this treatment can lead to complications and impact quality of life of patients. Therefore, axillary node resection is not recommended for stage IV breast cancer. Finally, radiotherapy can be an alternative option of local therapy associated or no to surgery in stage IV breast cancer.
Copyright © 2015 Elsevier Masson SAS. All rights reserved.
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Old 04-10-2015, 07:09 AM   #7
redwhiteblue
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Re: Mastectomy & Radiation with Stage 4 Diagnosis

Hi Kat, i have mets in my spine sternum and hip, after chemo (in fact after the first 3 rounds) the multifocal bc in my breast was gone. I than had radiation and the mets are stable. I went through mastectomy and axilary surgery and have been on herceptin and letrozol/exemastan)l for nearly 5 years now. I am doing fine, my TRAM is near to perfect, slight lymphedema my numb left side seems to get its sensation back.I think the regime here in Germany is different to the US, they tend to go for surgery even for metsers.
Hendrina
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Old 04-10-2015, 07:46 PM   #8
annettchen
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Re: Mastectomy & Radiation with Stage 4 Diagnosis

I have had surgery because at the time of the surgery, it was not known yet that I had mets. Since mine was a smaller tumor (2.3 cm) I had a lumpectomy. They tried to take out the sentinel nodes, too, but what they took out did not contain any lymph nodes (I have yet to understand how that came about).

As far as I know they would not have done the lumpectomy if they had known at the time that I'm stage 4. At any rate, lumpectomy and sentinel node surgery was the easiest part of the journey so far. I went riding 3 days after the surgery. Lumpectomy, though, not mastectomy. Definitely easier than Herceptin and Perjeta, and that - for me so far - is a walk in the park compared to Taxotere.

I have asked my oncologist for radiation - she does not want to do it even though I asked for it. Part of her reasoning was that she would like to keep the option open in case it's needed at a later point. And that recurrance in the breast is the least of my worries. So far (13 months after stage 4 diagnosis) the breast is clean, so I acquiesce.
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03/2014: Diagnosed with ER/PR-, HER2+++ MBC (bone mets, oligometastatic)
04/2014: Started 6 cycles of "PHD" (Perjeta, Herceptin, Docetaxol)
07/2014: Finished 6 cycles of PHD; restaging; 2 bone mets are sclerotic - looks like Herceptin and Perjeta is working
10/2014: STABLE!
01/2015: STABLE!
04/2015: STABLE!
08/2015: STABLE!
12/2015: BRAIN METS. BODY STABLE.
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