Breast surgery even with liver mets?

Options
Honeybee68
Honeybee68 Member Posts: 34

I just joined the de novo stage IV club today. I have DCIS and IDC in right breast, ER-, HR+ and HER2+, which has spread to at least one axillary lymph node, likely chest wall invasion, and the liver. I have two lesions on the liver and biopsy shows it is malignant. Since I was just diagnosed, I do not have a treatment plan yet but my breast surgeon said that surgery on the breast is no longer an option. But I see other people here have had breast surgery even with a stage IV diagnosis.

If you had breast surgery to remove your tumor even with a stage IV diagnosis, can you explain why your doctor recommended the surgery? I am confused as to why they wouldn't remove the breast tumors even though it has spread.

Comments

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited June 2018

    Honeybee, I'm sorry you got this diagnosis. Your doc did the right thing to get a liver biopsy. The surgery decision must be individualized. Here are two reasons not to do surgery: First, breast surgery is a local treatment, and since the cancer has traveled to other more critical places, the priority is systemic treatment (e.g. chemo and a targeted therapy such a herceptin) to address the liver mets. These treatments ought to work on the breast tumor as well. Second, according to my onc, surgery and anesthesia cause reactions in the body that can promote metastasis. On the other hand, if the doctor thinks breast surgery may be part of bringing a patient to NED (no evidence of disease), he/she may recommend it. I believe this is more common for oligometastatic and de novo patients. If surgery is an option, please research toradol, which is an anti-inflammatory drug that may help deal with the pro-mets aspect of surgery. In my own case, my first chemo zapped the new breast tumor into oblivion and it has never been seen again. So I'm glad I did not have a mastectomy, though I would have done it, with no reconstruction, if my trusted onc had advised it. Ask questions and possibly get a second opinion until you feel satisfied that you have the best plan in place for you.

  • Heidihill
    Heidihill Member Posts: 5,476
    edited June 2018

    I am both oligometastatic and de novo like you. I had chemo first which put me to NED on scans. A mastectomy and axillary dissection followed.  I had two opinions right after diagnosis (one at a US  NCI designated cancer center) and both recommended the same protocol. That was more than 10 years ago. All I can say is that it is very individual and protocols may have changed in the meantime but certainly systemic treatment is a priority. As Shetland mentioned, an anti-inflammatory approach prior to and after surgery also has to be considered. This is one study out there just to get an idea:

    https://www.sciencedaily.com/releases/2017/08/170807104054.htm

  • DATNY
    DATNY Member Posts: 358
    edited June 2018

    From what I have read, surgery is believed to promote metastasis through angiogenesis, or blood vessel formation, due to certain molecular factors released as part of the healing process in response to surgery.

    On the other hand, there is a new trend in removing the breast even for stage IV. Apparently it does have an effect on improving the overall surviving period. Perhaps it has to do with the fact that the tissue is prone to mutate and might do so at a later time again, continuing to feed metastasis.

    In any case, for her2+ cancer, surgery follows after chemo, or neo adjuvant as is it called, because along with chemo it includes immunotherapy, Herceptin and Perjeta . Studies show that this sequence produces better results in terms of percentage of people being cancer free years later. I guess is probably related to the fact that her2+ cancer spreads even before a sizable tumor forms (studies published last year have shown this). The systemic treatment, very effective in case of her2+, wipes out the micrometastasis everywhere, thus angiogenesis is response to surgery doesn't matter.

    I noticed your hormon signature. Did you wanted to write that you are ER- / PR+? If yes, I wanted to bring to your attention that this is hormone combination is controversial. At the first biopsy I had the same diagnosis. My local onc. did not question it and included tamoxifen in my treatment plan for the PR+ part. Although I trusted my doctors I went to Dana Farber Institute for second opinion (for peace if mind), where the doctor immediately questioned the ER-/PR+. Thus, they repeaded the pathology on new slides prepared from same tissue extracted at my initial biopsy, and the result was ER-/PR-, as expected. Following this, I have sent another set of new slides prepared from the same tissue to an independent pathologist (Jean Simpson), who tested the hormones again and also found ER-/PR-. Doing this I avoided unnecessary hormonal treatment that would have been prescribed to me to take for years.

    Best wishes to you! Being her2+ gives you access to Herceptin and Perjeta, which are very effective drugs as they work by stimulating the immune system.




  • LoriCA
    LoriCA Member Posts: 923
    edited June 2018

    Stage IV de novo here and no surgery. With IBC chemo always comes first anyway, but I revisited the topic once we determined that the chemo shrunk the tumor. My doctors still think that surgery would do me more harm than good and have a negative impact on my quality of life. My mets are extensive so surgery would never "cure" me or even help me achieve NED. Maybe if I were oligometastatic the recommendation would be different. Herceptin and Perjeta are keeping everything under control for now, and my quality of life is good. The only time my doctor will recommend any surgery for me is if I have a symptom that is negatively affecting my quality of life, such as unbearable pain.

    There are so many different factors that go into the decision of whether or not to have surgery when you are Stage IV de novo, but I think the most important one to ask yourself is, what are you hoping to achieve with surgery and is it a realistic expectation?

  • Honeybee68
    Honeybee68 Member Posts: 34
    edited June 2018

    Datny: Yes, my receptor status is ER- but PR+. I am going to Mayo for another opinion and they will re-test my tissue samples so I am very curious to see what they find. The path report found the PR is just very weakly positive.

    Thank you all for your replies. The information you have given me is very good.

  • DATNY
    DATNY Member Posts: 358
    edited June 2018

    Honeybee you are welcome. If you'd want a third pathology opinion to sort out between conflicting diagnosis, look up Jean Simpson breast consultants. I had 40% and 60% PR in my original report, and none in the one from Dana Farber. When she repeated the staining she also found none, but she also took a look at the original slides showing PR+ and she didn't find any obvious flaw with them.

    Once again, good luck with your treatment. For me it worked really well, at the end of the chemo TCHP , there wasn't any cancer left in the four biopsied sites in the breast. I did implemented intermittent fasting and lived mostly on veggies during chemo, so that might have helped too. Also make sure you have a good level of vitamin D, (somewhere in the 50s.)

    Keep in mind that for her2+ cancer, studies on mice have shown that this starts to spread pretty much as soon as it appears. So most of us with this cancer must have it in other places at the time when it is discovered in breast even it is not big enough to be picked up by imaging. Before Herceptin and Perjeta the survival rate for this cancer was really poor. But this medicine works really well for most, and many stage iv ladies become cancer free soon after they start treatment. Wish this will happen to you soon!

  • Honeybee68
    Honeybee68 Member Posts: 34
    edited June 2018

    Datny: again, thank you so much! I will keep Jean in mind. I do think there is a good chance that Mayo’s path will be different and I might need a “tie breaker”.

    If you dont mind, could you tell me how long ago you were diagnosed as stage IV? It is so uplifting to hear others’ stories

  • DATNY
    DATNY Member Posts: 358
    edited June 2018

    I was not found to be stage iv at diagnosis. Initially the doctor said 2a, but my MRI report said numerous abnormal lymph nodes. Too many to count. I had hard time to believe the cancer was localized, because I felt so sick. Within the year prior to the diagnosis I kept telling my husband that I am affraid I have cancer and that by the time it will be found is going to be too late. It was that bad. My worst symptoms were related to digestion, I didn't have normal digestion in months prior diagnosis; now is all good.

    But there is at least one user with hr-/her2+ with official stage 4, who was declared NED, was treated with Herceptin for almost 10 years and now has been released from the treatment. I will look to see if I can find her and will share with you her info.

  • DATNY
    DATNY Member Posts: 358
    edited June 2018
  • stephincanada
    stephincanada Member Posts: 228
    edited June 2018

    Hi Honeybee,

    I am so sorry about your diagnosis, but there is good reason for you to aim for a cure and consider surgery. Check out this study:

    http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15...

    "About 13% of de novo, stage IV, HER-2 positive MBC patients achieved NED with HER-2 targeted therapies, all of these patients were progression free at 5 years and overall survival at 10-years was 98%". NED patients "more frequently had single organ site metastasis (76% vs 57%), and more frequently had surgery for primary tumor (59% vs. 25%) than no-NED patients". There may have been some selection bias going on (those who presented with low disease burden had surgery, while those who had very advanced disease did not), so I would discuss this with your doc.

    Chances are good that the chemo and H & P will obliterate the tumor in your breast; you can then decide what to do about surgery/radiation. Lauriesh on these boards also had stage iv disease de novo, achieved NED, and is now off treatment.

    See also:

    https://link.springer.com/article/10.1007%2Fs10549...

    More than 80% of stage iv HER2+ patients are alive 10 years after metastatic diagnosis.

    I know it is easier said than done, but have hope. All is not lost.

    Best wishes to you...

    Stephanie


  • DATNY
    DATNY Member Posts: 358
    edited June 2018

    Thanks for sharing, Stephanie!

  • Honeybee68
    Honeybee68 Member Posts: 34
    edited June 2018

    Thank you so much! I would give you a hug right now if I could. This information is so helpful. It is hard to hear that you are stage IV right out of the shoot so this gives me hope.

  • stephincanada
    stephincanada Member Posts: 228
    edited June 2018

    Cyber hugs are accepted, Honeybee! So glad to help. When do you start treatment?

  • Honeybee68
    Honeybee68 Member Posts: 34
    edited June 2018

    I go to Mayo on July 13. I think they will recommend chemo as the first step. I hope to get started as soon as possible.

    • Were you able to work during chemo? I think I may be on the same ones. Was it really difficult to function? How long did chemo last for you

Categories