Breast surgery for de novo Stage 4

Hi, I was diagnosed with de novo stage 4 mbc with extensive bone mets in Feb 2021. Prior to diagnosis I have moderate/severe pain in both my breast where the primary tumor was located and also from the bone mets. I am responding to Ibrance/Arinmidex therapy and the bone met pain has subsided but I still have pain in my breast and armpit where it has spread to the lymph nodes. Has anyone with de novo stage 4 had breast and/or lymph node surgery as part of their treatment plan? The literature seems to be inconclusive on if there is any benefit for surgery.

[Staysha]

Hi!

Opinions differ greatly among members of this board. I was diagnosed stage 4 de novo and I had a right mastectomy with lymph node removal. The meds have worked on my other areas and for the moment I don’t have any signs of cancer. I continue to be on my cancer medicine regimen.

My advice is to do what you feel is right for you.

Best wishes,

Stacy

[JKMS]

Hi - I was diagnosed de novo last year and my oncologist’s view is not to operate unless patients are in pain which I am not currently. I have however had thoracic surgery, vocal cord surgery and had my ovaries removed yesterday so people find it hard to understand that the site of the primary remains intact! But if I had been in pain and this would have assisted, I would be minded to undertake purely for that reason.

[BluHydrangea]

I had a recurrence after 13 years and just a couple Mets. After much debate I had a mastectomy in March. My breast tumor was large Iit did shrink after Ibrance but no way it would disappear. I feel good about having surgery my team thought with few Mets surgery could extend my life.

[Topood]

I have lymph node involvement too, but no one has suggested surgery....first Ibrance and then (when Ibrance and 3 other treatments didn’t work) now Xeloda have made them shrink noticeably without surgery! I am so grateful to those nodes....I would never have known I had MBC without them....it helped me catch it before it got much worse....

[Bettybuckets in reply to Topood]

I only found my bone Mets because of the neck lymph node bulging... so I am grateful too...I wondered if there would be a benefit from surgically removing or radiating.. I am worried that brain Mets or other things will come feom leaving it. Did they talk to you about options?

[Topood in reply to Bettybuckets]

No, they have never discussed surgery with me up to now! I think the chemo is so much less invasive and safer.....but I know every case is different!

[Archiedog]

Hi, I was diagnosed de novo April 2020 mets to nodes in chest and suspicious areas on spine. I first found a lump under my arm which led to my diagnosis. Ibrance and letrozole have worked wonders and I am now having a mastectomy and underarm node clearance. Unsure of overall benefit but was advised by oncologist she was of the opinion if the drugs lost their potency thr monster was likely was flare up first I’m my breast. Soooo it’s coming off!! I cannot wait to be rid of this rot in my body. I will be off ibrance 2 weeks before and 2 weeks after op. I know it’s a big decision but my opinion is if I have the op I will feel I have done everything in my power to help my overall situation

[13plus]

I think it’s true that it is inconclusive. However I have a younger friend who has had stage 4 for years, never had surgery or rads on her original breast lump. But at some point along the way (initially the treatment shrunk her lump a lot) her breast lump either grew bigger again ( or it was a new lump) and she did have it removed. That was a few years ago and she is still thriving. You haven’t been on meds for long so perhaps it needs more time to work, but if you’re in pain that may be a reason to remove it. Perhaps it depends how bad the pain is, if it’s getting worse. And if it’s worse, or it’s getting bigger, or lymph node spread is even newer that might be a good reason for surgery . Probably wise to seek a second opinion

[Seaglass77]

Hi - My lobular cancer was found on a routine mammogram in May 2019. I'd had a burning sensation for years but nothing showed up on tests. The surgeon suggested a lumpectomy to remove the 2cm tumor and radiation. She was sure there wasn't any lymph node involvement. Surprise! She was wrong and removed 32 cancerous lymph nodes. A subsequent PET scan showed cancer in my bones and liver. I'm doing well, NED for a year now, on Letrozole and Verzenio, but if I had known I was already stage 4, I'd have never had the surgery. I have a lot of nerve damage in my shoulder and upper arm due to the surgery. Plus the ongoing thread of lymphedema. Thankfully, I've got a great physical therapist that has helped me through it. Sure wish I'd have gotten a second opinion!!!!

[Lulu4545]

Hi,I was diagnosed in May 2020 de novo stage 4 with extensive bone mets.

My onc suggested I have the primary tumor removed as soon as my bone mets weren't active anymore.

I had it removed in March 2021. It was still active in January 2021 - suvmax 5,5 but had shrunk to 1,3 cm, ki67 5%.

As no lymph nodes appeared on the pet scan, none were surgically removed.

This is an important point because, from what I understand, the pain and sequelae usually come from the nodes' removal.

The surgery went really well. My breast has the same volume and looks almost the same as before.

I have found several studies suggesting that in some cases such bone mets, surgery could delay recurrence.

I have just finished 20 sessions of radio therapy.

That was fine also.

I believe it was a good thing to do. I feel much better now. Not as scared.

It's strange. I can't really explain but having this primary tumor out was a positive experience that has help me psychologically tremendously.

That's my experience. It's all up to you.

Take care.

Lucie xxx

[PJBinMI]

I was diagnosed with denovo "extensive" bone mets in 2004 and had a lumpectomy a few months later after Letrozole had shrunk those mets. I have lobular bc and the primary was very invasive so clear margins were not possible. I've never had rads or chemo. Hormonal treatment along with bone drugs have worked extremely well for me. I did have a second lumpectomy when the primary began growing again about 5 years after diagnosis. Again, no clear margins. I've never regretted the lumpectomy choice and decided years ago that if a mastectomy was ever recommended, I would push hard for a double. I am large busted and friends have had major balance problems with a single mastectomy. That's why I would opt for a double. Plus I could wear tops that are a smaller size, lol!

[TLLS]

Hi I was diagnosed with bc in right breast and lymph nodes in Oct 2020 with mbc to liver, lungs and bones in Nov 2020. The plan in October was mastectomy however after discussions with a new oncologist she said that mastectomy would not be beneficial and there is higher risk in having surgery when you have mbc. I keep having a lot of pain with the lump in my breast but my onc keeps a regular check on me and I just take paracetamol at the moment.Sending hugs

Andrea

[Beryl71]

Not had surgery but was originally in a lot of pain. It took a few months for the meds ( letrizole and ibrance) reduced the pain and it was probably about ten months before I felt confident about dropping all pain relief. Take care. X

[DDIL1]

Following up.. did you get surgery? I have lymph involvement as well, breast tumor gone on Ibrance and bone Mets getting better but lymph still an issue. How are you now?

[Hidden in reply to DDIL1]

No I didn’t. I couldn’t get a clear answer on what the purpose was from either my onc or breast surgeon. Also there are no well designed scientific studies published that support surgery.

My Mets have now spread to my liver and I’m on iV chemo.

[DDIL1 in reply to Hidden]

I’m sorry to hear that. But I hope this new treatment plan shrinks them. Thank you for your response