My recent PET/CT scan revealed cancer growth in the peritoneal area. The doc says this is very unusual for MBC to show up there. Don't have a definite plan yet but leaning toward:
1. Biopsy to send to Foundation One
2. Starting Xeloda (pill) or Gemcitabine (intravenously)
I was on Kisqali for 22 rounds and was NED for 15 months. Very grateful for that.
I will definitely get a second opinion maybe at MD Anderson. Any recommendations for Breast Cancer Specialist there?
Has anyone on this board ever had or heard of MBC migrating to the peritoneal area?
Thank you all for your support and help. Everyday is a gift for sure.
Audrey
Written by
Thrifty51
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It makes me sad to hear your news. I am glad you are going for a second opinion. You are right that everyday is a gift. M.D. Anderson is a great cancer hospital. I went there in 2000 - the first time I had breast cancer. The oncologist that I went to was at Yale the last time I checked. Go on MDA website and check out their breast cancer oncologist and read their resumes. Select 2 or 3 that you like their resumes. I particularly look at where they do their fellowships and then call and make an appointment with your first choice. Wishing you the very best. Blessings Hannah
If your cancer is lobular, then it's not at all unusual for it to metastasize to the peritoneal area. Good to hear you'll be obtaining a second opinion at MDA!
I've been told from the first diagnosis in 2004 then the second in 2018 that my cancer is ductal. This is why the oncologist said that he thought that the new growth in this area is very rare. Maybe this is all the more reason to go to MD Anderson.
Although it's rare, ductal can travel to odd places. Another person on this forum had ductal that metastacized to the ovary. She's now been NED for years!
Oh, gosh, Audrey, I'm sorry that you're having progression....But I do think it bodes well for you that you've been NED for so long? Like, your cancer isn't extremely aggressive? I doubt that helps much, we all hate progression, but I do think you're starting from a good place and have an excellent plan.
Oh, not so nice to get results like that. Hopefully it will be minor and not develop any further. Great that you have access to a great hospital for a second opinion.
I'm so sorry to hear that. It must have been quite a shock. My lobular breast cancer came back in my peritoneum. After being blown off by multiple doctors, for 2 years, and misdiagnosed with Crohns disease and almost put on Humira, they finally did an exploratory surgery and found my peritoneal mets in February 2020. If it is lobular I've been told it's a very slow moving cancer.
My sister is a patient at MD Anderson and would not be alive today if it were not for the doctors there. Amarillo had just " checked out" and had no plan of care. My sister loves her oncologist, Dr. Bueno. She's very knowledgeable. She's not at the main campus but in the facility in League City. My sister could not even walk without assistance and was wanting to go on Hospice, now she is back to work and praise God getting stronger. Good luck to you!
My first thought when I read your note was that the cancer is likely lobular, as two others have suggested. Audrey,, I've had metastatic invasive lobular breast cancer, denovo (metastatic at first bc diagnosis. ) since March 2004, over 16 years! It does go to odd places compared to ductal mbc, a more common diagnosis. I've heard of it going to the lining of he heart, the eye socket, the intestines, and probably other lining tissue that I am not remembering at the moment. Audrey, if you saw me walking down the street, you would notice that I am an older woman walking somewhat slowly but you'd not guess that I have a "terminal" cancer! I don't know how much is cancer itself and how much is cancer treatment, but I am tired a good bit of the time, but most days I can cook dinner, feed the dogs, do 2 or 3 loads of laundry, and enjoy writing, reading and watching the fall leaves falling. I can always shower and dress, go on-line, get my breakfast together (cold cereal with five prunes (LOL), milk, and two bottles of frappaccino, sort the mail that my dear husband brings in, and pay any bills that are due soon. Going to MD Anderson is a great idea! It's a Comprehensive Cancer Center and most knowledgeable people would list it among the best 3-5 cancer centers in the country! Your own onc should support you going there and help you get an appt quickly. I live in a different part of the country and go to a different CCC for second opinions and my oncs have always helped get me in quickly. I saw oncs as my dear wise older onc retired, which to me was more upsetting than cancer progression has ever been! I'm on just third line treatment. I got an amazing 9 + years from #2, Faslodex. I hope you will get great treatment planning at MDA and have the same kind of good luck that I have! Oh, and there is a facebook group for those with lobular bc--I don't find it particularly helpful, but if I'd found it early in treatment, I might have liked it better! Good luck and prayers to you......and all that are here!
My lobular bc was diagnosed in August. Mets to ovaries, uterus and peritonial area. I went through a hysterectomy on august and just started cycle 3 of Kisqali and Letrozol. CA 15-3 is now 86 (on sep was 172) and noticed a reduction in the size of the tumos on the breast. It is amazing to read that you are in the 3rd line of treatment for over 16 years. It gives me hope!! I wish you all the best.
My most recent PET Scan showed a mass in my mesentary. Having a laparoscopic biopsy next week. I was told that it is unsure if it is related to my breast cancer, but after reading several comments, it could be actually related since I had lobular cancer.
Greetings: Sister, and yesssssss warrior. I am praying you will once again get the treatment to beat back this cancer, and have another 20+ years to enjoy with your loved ones Amen
When I was first diagnosed with MBC in October 2018, both my right pleural area and peritoneal area were filling with fluid, of course filled with cancer cells. We did a few months of Taxol which took care of the fluid, and then I went on Ibrance (which didn't feel too helpful) and then letrozole and Fulvestrant. Now I'm back on chemo since the fluid came back this summer. The chemo has again taken care of most of the fluid in the first two sessions. My counts were too low to have it last week, so I'm hopeful that this week will be different.
I see Dr. Pallav Mehtam, head of Integrative Oncology and Breast Cancer at MD Anderson's Cooper campus in New Jersey. He has been very responsive and agreed that I needed to have a little systemic chemo to try to bring things back into balance--it's been a pretty rough patch for the last few months. I have been very impressed with both Dr. Mehta and MD Anderson.
I hope that you have good luck there, too. Blessings and peace.
Lobular in the peritoneal area, lots of fluid and pain in the stomach, my onc put me on IPT with vinorelbine and gemcistabine, now on hydrazine sulfate and faslodex, slowly going better, every recommendation was from R.G.C.C greek test, i wish you all the best❤️
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I am praying you will once again get the treatment to beat back this cancer, and have another 20+ years to enjoy with your loved ones 
NED after 5 months on Ibrance and Letrozole
MBC and NED status
NED and Scan frequency?
What happens after NED?
