Anyone out there with MBC and Lymphoma diagnosis?

Hi, KelQ. Ugh, I'm sorry you find yourself in this situation. Regarding how to get reliable information, assuming you are in the USA, I strongly recommend you get a consultation at the nearest NCCN center (National Comprehensive Cancer Network) to you. Yours is what they call a complicated case, and you want to get the input of a team of doctors who are used to dealing with complicated cases. The people who write the diagnosis and treatment guidelines for various kinds of cancer. They can work together to come up with the best plan for you.

https://www.nccn.org/members/network.aspx

Well phooey. You have gone to the right place but it sounds like they are not coordinating with each other well. I’m sure there is a tumor board for each specialty and that is what they are used to. My breast cancer onc talks with people in the liver/biliary department about me because the ILC messed with my common bile duct. I was sent to consult with some specialists in that department. (At first we feared a new cancer, bile duct cancer.) The key has been that my breast MO talks with the liver/biliary people outside the formal tumor board meetings to coordinate my care. She is one of the two lead oncologists in the breast cancer department, and she talks with the lead people in liver/biliary and endoscopy. Do you know how the oncs you saw rank in their departments? I would hope that one of the lead medical oncologists from each sub specialty would meet to discuss you. I think it takes someone with the rank and confidence to pull the right people together. Have you considered transferring your care to Northwestern?

I suppose one of the questions is, which would be more immediately dangerous to you, progression of mbc, or progression of lymphoma? And are there any treatments that can be used for both? Can you play whack-a-mole as needed? They are probably afraid of combing treatments in untested ways. But I would think something pretty benign like Faslodex could be used for mbc along with whatever lymphoma maintenance is best at this point. (I know nothing about lymphoma treatment.)

Ask for both the breast cancer and the lymphoma boards to weigh in, and for representatives from each to talk with each other about you. True, statistically Ibrance lengthens the time letrozole works, but for some people letrozole alone works for a long time. And you have Faslodex in your pocket, which can work if letrozole no longer does. I think your oncologist's plan makes sense. Let's see what the Northwestern people say. Be sure to ask for genomic testing (Foundation One, Guardant) whenever a treatment change is proposed so your therapy can be very focused. Being on drugs for two cancers, you want to be as efficient as possible. It sounds like you are an informed and involved patient; keep up the good work. Sending you lots of wishes for loooong remissions and feeling good!

KelQ-Good to see you on the boards. I have been wondering how your lymphoma treatment went-glad to hear you are close to remission. Best wishes as you and the specialists figure out the best plan.

KelQ-So glad you are feeling well. I am too (fingers crossed). I bet Dr. Flaum will have good advice on how to proceed. Hope you also stay well during all of this craziness.