Recurrence Rates with Surgery vs. without Surgery

ehw1909

Hi -

My mom was diagnosed with HER2 Positive, Estrogen Negative, Stage 3 Cancer. She was originally recommended to do 6 rounds of chemo then a double mastectomy. She is almost done with the 6 rounds and her latest scan showed the tumor is gone (yay!). The doctors are still recommending that she have a double mastectomy but she has decided that she doesn't want to do it because the tumor is gone. I keep asking her what the rate of recurrence has been in others who have had the surgery or have not. She won't give me an answer. She said that she is doing a newer medicine that has been successful so there isn't information on the survival rates of surgery/no surgery. I understand this. But all I want is information on historical data--I'm sure there is a reason the doctors are recommending this and I'm thinking it's based on recurrence rates. I want to support her in her decision, I understand that sometimes the doctors are wrong, but I also want her to be fully informed. Does anyone know where I can find research on rates of recurrence based on surgery versus no surgery? I can't seem to find medical information and answers via initial Google searches. It can be in journals or long papers. Thank you.

ElaineTherese

Hi!

Surgery is the oldest and most effective treatment for breast cancer. Surgery alone reduced my recurrence rate by 70%. Everything else -- chemo, radiation, hormonal therapy, and so on -- work on reducing the 30% recurrence rate that is not addressed by surgery alone.

In fact, calculators designed to help women figure out their recurrence rates assume surgery. See the link below:

http://www.predict.nhs.uk/predict_v2.0.html

I would ask your Mom for more information. I had chemo before surgery, and my lump disappeared. However, no one said that I could skip surgery! I had a lumpectomy + radiation, though.

Good luck!

ehw1909

Thank you, Elaine. This is helpful

ElaineTherese

By the way, just because an MRI and a PET scan says that the active cancer is gone doesn't mean that there isn't anything left. The pathology from my surgery confirmed that all of the active cancer in my breast and compromised lymph node were gone. However, the pathology report showed that there was a teeney-tiny pocket of DCIS left over. Chemo wouldn't have touched it because it wasn't invasive. I'm glad I had that pocket removed because the DCIS could have evolved into IDC. Good luck!

NotVeryBrave

I was probably where your mother is mentally and emotionally a while back. I had a great response to chemo and the logical part of me thought "why do I need surgery if the mammo, MRI, and US all show the cancer is gone"? It's a valid point to consider, but I don't think any oncologist would ever recommend that.

It's true what's posted above. All of the studies include surgery. All of the models assume surgery. There really doesn't seem to be a way to avoid it.

ehw1909

What eventually changed your mind? The doctors have told her they don't support her decision and she will have to sign something acknowledging that they advised surgery, but they don't seem to be changing her mind.

NotVeryBrave

What changed my mind? Well - I knew skipping surgery was a pipe dream. I knew I wanted to do everything I could to avoid ever having to do this again!

I have possibly done more than was necessary. No one knows for sure. But I did know that I would kick myself if I had to deal with a recurrence and I hadn't done what was recommended.

Of course - it's your mother's call. Is there a reason (beyond just not wanting surgery) that has her going down this path? I was a healthy person with no other health concerns. I may have felt differently if I had other problems.

Has she met with both a breast surgeon and a plastic surgeon (or two or three)? Or maybe talked with other women about their experiences? Has her oncologist given her any guess about her risks?

ElaineTherese

ehw1909,

Your Mom is an adult, so she has a right to refuse surgery if she wants. It would be hard for me to accept as a daughter, but at some point, each patient has to make her own decision.

With HER2+ cancer, I personally was fine with "the works" -- surgery, chemo, targeted therapy, radiation, and hormonal therapy. HER2+ cancer is particularly aggressive; before Herceptin, it used to produce some of the worst survival rates (40% at five years). Also, if your Mom does get mets, there's a pretty good chance (40%) of her mets eventually moving to her brain. Again, it's your Mom's choice, as long as she's aware of what could lie ahead.

No matter what she chooses, I hope your Mom has a long and healthy life!

NotHerToo

For what it is worth, my sister did the opposite, also against medical advice. Diagnosed at age 41, she would only agree to surgery, and while her oncologist disagreed, he was also respectful of her decision. She was stage 1 Her2 positive and decided to have only surgery and alternative home remedies nothing more. She lived for 11 years, but was clearly metastatic for several years and quality of life suffered. She opted for no chemo, hormones or herceptin. Her choice. Her way. There are no guarantees, but I always wonder if she'd be here today if she had followed medical advice. She was my younger sister and best friend. My mother was diagnosed at 43 but cancer was already advanced to where surgery and chemo were too little, too late. She also died from this disease. I decided to blast with all available options and will see if it makes a difference. I respect my sisters decisions. Her body, her choice. It was still very painful to be supportive while helplessly watching her deteriorate.

Icietla

Hi ehw1909. So sorry about your mom's illness, but glad you found us. Your mom is very blessed to have you taking such an interest in her case and her well-being.

None of this linked material answers your particular question, but I think reading through it all will help your understanding about her Doctors' treatment plan recommendations anyway. Keep in mind that Clinical Complete Response (cCR) and Pathologic Complete Response (pCR) are to be distinguished. Pathologic Complete Response to Neoadjuvant Therapy can only be determined by a Pathology Lab's examination of tissues removed in Surgery.

http://www.breastcancer.org/research-news/20140115

https://www.verywell.com/complete-response-cr-2252350

https://www.healthtap.com/user_questions/898757-is-it-necesary-that-a-mastectomy-or-quadrantectomy-be-required-after-complete-pathological-response

http://www.tandfonline.com/doi/abs/10.3109/1473340410001732398?journalCode=iwor20

http://ascopubs.org/doi/abs/10.1200/JCO.2003.05.208?journalCode=jco

https://community.breastcancer.org/forum/80/topics/857648?page=1

https://community.breastcancer.org/forum/72/topics/788032?page=1

Snowfall

On what are they basing the conclusion that your mother has had a complete response to chemo? If it's from imaging (MRI, etc.), it might be helpful for your mother to talk with her oncologist about the reliability of imaging. My 5 centimeter tumor turned out to be 10.5 centimeters when they did surgery. I was told that it is very common for imaging to be inaccurate. It's better than nothing, but you don't really know what happened during chemo until the surgeon goes in and takes a look.

Needle biopsies aren't foolproof either. The inflammation of my lymph node that a biopsy said was benign was in fact malignant. They didn't know that until they were able to biopsy tissue taken it surgery. The needle biopsy apparently missed the cancerous tissue.

In other words, your mother might want to reconsider the reliability of the data she's receiving this point. Her doctors may be able to help her understand the likely margin of error.