Mastecomy/Lumpectomy no longer and option/priority - stage IV

Freygea,

Sorry that you are joining us. I have no hard and fast numbers for you, but I know there are others who have not had surgery, if they are stage IV at the outset. On the other hand, some have had surgery as it is thought that reducing the tumor load may be helpful. "Free flowing" estrogen would only be an issue for those who are ER+, though I have not heard of this. I had a bmx, only to discover, 6 weeks later, that I had a bone met. I have been NED since initial tx, on AI's only (rads to bone met). I often wonder what the course of tx would have been if the bone met had been found before surgery.

Freygea-I just found this post after seeing your post in the Herceptin/Perjeta forum. I'm sorry you find yourself here. I too was dx Stage IV from the start, so I know how ovewhelming it can all be. The ladies on this site are wonderful and have a wealth of knowledge about treatment and managing side effects.

My doctor did not recommend surgery either, using the "the horse is already out of the gate" analogy, and I'm ok with that decision. I had extensive bone mets at dx, but the most troublesome were two in my spine wich I had radiation for because they were concerned with spinal cord compression. After radiation I started Taxotere, Herceptin, Perjeta and xgeva. The first round was the hardest as I was still in a lot of pain, but once the tumors started to shrink I was able to do day to day activities much easier. I continued to work 40 hours, although my job allows me to work from home when needed and they were very kind and flexible with my schedule.

Now I am on Herceptin, Perjeta, xgeva and Tamoxifen and I feel pretty darn good! I still have a lump in my breast that I can feel, but I do believe it is slowly shrinking. My bones will always show "evidence of disease" on a CT scan as my dr says, but he says it is probably scar tissue. I still get twinges and muscle spasms if I overdo it, but I'm learning my new limits. My scans have been extended from every 3 months to every 6. I still get a 3 month echocardiogram because Herceptin can be toxic to the heart. So far so good!

I wish you the best with your treatment. Feel free to throw out any questions you may have...someone will always have an answer!

Freygea, welcome. There are different schools of thought about breast surgery for stage IV, and decisions have to be individualized. Here is what my MO said about why she did not recommend surgery for the breast tumor that was found at the same time as liver mets:

1. Anesthesia and surgery cause reactions in the body, at the cellular level, that can promote the spread of the cancer.

2. The breast tumor is a useful way to monitor how effective treatment is. (Indeed, during taxol we could feel it shrinking, as my tumor markers dropped. It seems to be gone now, according to exams and scans.)

Hi Bama - Just wondering - Is your doctor recommending a lumpectomy or a mastectomy?

My situation is similar to bama351. Was diagnosed as Stage IV November 2014. Started neo-adjuvant chemo in December 2014, 6 rounds of Herceptin/Perjeta/Taxotere and finished March 31. Had PET and full body bone scan (had 3 small bones mets) and both scans showed NED. My tumor in the right breast was 5.3 cm and is now 2 cm, just dead tissue. Originally I was told that due to my Stage IV status I would not get a masectomy after chemo but would continue with Herceptin/Perjeta infusions every 3 weeks indefinately. Then when I saw him last month he said my case went in front of the tumor board and they said because I responded very well to the chemo treatments and was NED they strongly recommended I have the masectomy. My Onc said that I not only had a large tumor in the breast but several smaller ones also and that there is a chance of recurrence in the affected breast and it may not respond as well. The tumor board also stated that most of the cancer was localized in the breast with only 3 small bone mets which are now gone so for those two reasons they changed and approved the surgery. Met with the BS last week and have masectomy scheduled for July 7. I have not decided if I will have reconstruction or not. Will decide after the masectomy and consult with PS.

Amy,

This thread has been inactive for over a year. So as not to leave you hanging, perhaps you could pm the person who posted about a FB group or one of the other women who responded to this thread. Take care

Hey Jc free did you ever have that mastectomy?

How did it all turn out

Curious, Paula

nan812,

Thank you for the kind words and yes I feel those weed looks but it's ok. Just am tired and live alone, kids gone and I am divorced I find myself lonely slit even though I am working 3 part time jobs, I also have to push myself to get out,

Again thank you for the kind words and best of luck