Mom’s MBC Diagnosis - Intro & Questions

[ntalley8]

Hi everyone! I am writing on behalf of my mom.

In Dec 2001 at 37 years old, she was diagnosed with Stage 2/Grade 3/ER +/PR +/ HER2 -. She had surgery, chemo, radiation and 5 years of tamoxifen.

December 2021, she’s received a metastatic diagnosis. She had a routine mammogram in August which was clear. In October, she rubbed her neck and felt swelling along with a small noticeable lymph node. Other than that, she had no symptoms at all. She ended up having an ultra sound, and CT scan which showed the lymph node was in the level 4 and 5b area of her neck. There were no suspicious areas found on the CT scan besides the lymph nodes. This led to doing two biopsies. The first one was inconclusive but the second one provided the metastatic mammary carcinoma of ductal type result. Her cancer is now ER + (80%)/PR -/HER2-. She had a PET scan after the biopsy results and there are no other areas with spread at this time.

Her oncologist did mention she could be Oligometastatic and if the cancer responded, local treatment could be an option. We did ask if she was considered a Stage 3c because of the lymph node location l, but he said the area above the collarbone is considered a distant site. He also mentioned that because there isn’t a tumor present, there isn’t a way of knowing the grade or specific type of IDC. We did genetic testing a few years ago to see if we both have any BC genes and we do not. She started on 75mg Ibrance and Letrozole a couple weeks ago and seems to be handling it well. Some hot flashes, brief headaches and fatigued but other than that, it’s been pretty good

A few questions:

Has anyone ever had lymph node only mets with no other tumors or spread anywhere else?

Is anyone being treated for Oligometastatic BC?

How effective is Ibrance and Letrozole on lymph nodes? How soon do both drugs begin working?

Has anyone’s receptor status change from ER+ to ER - making them triple negative?

Are there any individuals who have been living with MBC for over 5+ years? She is very active and is committed to keeping her quality of life as high and normal as possible.

This has been a tough month, but we are taking things one day at a time and looking at the silver lining in everything

Thank you in advance!

[Nocillo]

I’ve been living with it for 6 1/2 years first diagnosed with MBC to bones and now it’s also gone to stomach. With proper medicine, I feel pretty good.

[ntalley8 in reply to Nocillo]

That is very encouraging to hear! Is your MBC lobular or ductal? Are you taking Ibrance as well?

[MadameKa]

Hello and sorry to hear about your mother. I am three or four years older than her and first had cancer in February 2003. I thought I was free of it until March 2018, when it was found in my lungs and bones, so in theory, much worse than your mother, yet I have been having a fairly normal life on Ibrance, Letrozole and monthly injections of Denosumab. It's scary, I know and you never get used to it, but the waves of panic will subside. I wish your mother all the best.

[ntalley8 in reply to MadameKa]

Thank you so much! It is very scary and so out the blue. She had no symptoms of anything except just rubbing on her neck while on a break at work. 20 years ago, her and my dog found her lump while she was just laying in bed rubbing her neck/chest area. To say both instances are similar is an understatement. How have your side effects been on your treatment?

[Buffwright in reply to ntalley8]

My only symptom was tingling fingers….( cancer wrapped around armpit nerves.)

[MadameKa in reply to ntalley8]

I lost a lot of hair in the first few months and that was upsetting because I didn't want to disclose my condition outside the family. Otherwise just manageable fatigue, but I work full time and it's difficult to know how bad that would be if I didn't. Usually it hits in late afternoon. The main side effects for me were psychological. I am by nature an optimist, and getting this kind of diagnosis knocks a lot of that out. But everyone asks about the patient and yet family members share a lot of that psychological burden. I don't know what age you are, but I have a son who is 21 and I think it's unfair on him, to have that worry, even if it also makes him a better, more emphatetic person. I know you are a great daughter simply because you are here. Your mother is lucky to have you.

[ntalley8 in reply to MadameKa]

She works full time and experiences the fatigue in the afternoon as well. She’s an optimist as well but I already see how the psychological aspect is more challenging for her than the physical. Yesterday, her oncologist team told her to stop taking Ibrance due to a 0.3 neutrophil level and that bummed her out because she just started Ibrance on the 13th. I am 29, but I do feel overwhelmed with it all. I’m just choosing to take things one day at a time and try to stay positive. 😊

[sancarlos]

I began my journey with breast cancer at the age of 35. At the time I did chemo. After that I took Armidex for 10 years, until I had a reoccurrence in my sternum. After radiation I was put on Femara, That worked for me for 25 years! Three years ago it came back in various bones in my body. I did radiation again and I am presently taking Ibrance and Femara.One of my docs told me to focus on living 5 years , because every 5 years there will be a new drug to get me through the next 5! He told me that at 35, he was right!

My advice, keep looking to the future. Take one day at a time and do the most you can to enjoy each day.

[ntalley8 in reply to sancarlos]

Thank you so much for your advice! Wow it came back after 25 years???? See, during our oncologist appt, the dr said that ppl who have recurrences after 20 years are rare and considered late recurrences to more than likely be a slower growing cancer type. I’m praying that is the case considering the circumstances. That is great advice your doctor gave you! How have your side effects been on your current treatment? So far, she hasn’t had too many side effects from the Ibrance and letrozole combo but she just started so I’m sure it takes time.

[LDR1]

Hi Ntalley8, sending good wishes to you and your mom, I’m sure this is a scary and upsetting time as you try to get used to the new diagnosis. The fact that it’s only in 1 lymph node seems quite hopeful for Oligometastatic diagnosis / options, which is what I have. I will DM you with more details.

[ntalley8 in reply to LDR1]

Thank you so much! It’s very nerve wrecking but we are taking it one day at a time.

[ntalley8]

Thank you so much! It’s very nerve wrecking but we are taking it one day at a time.

[Buffwright]

It’s impressive that she had 20 years between diagnosis. I was diagnosed stage 2 b in 1994 at 40, again in 2005 and MBC in 2016. So, I’m almost 6 years out. There’s hope in the fact that there’s much more interest in MBC and even advances with triple negative. I need to ask my doc about migration from hormone positive to negative…..

[ntalley8 in reply to Buffwright]

Hi Buffwright! I’m sooo glad to hear you are 6 years out! Praying you get MANY more!! Have you been ER+ since your MBC diagnosis?

Her oncologist said it was “rare” to have a reoccurrence so far out but it happens. I do wonder if there is any correlation between the length of time from diagnosis and MBC. He thinks her cancer may be slow growing but since there isn’t a tumor, we can’t know for sure.