DCIS to Stage IV

MsLin

I am trying to make sense of a friend’s recent diagnosis of Stage IV. She was diagnosed with DCIS in 2018. The cancer was in the entire duct, but all scans showed it was DCIS. She opted for a single mastectomy as lumpectomy and radiation were not an option. She’s been on tamoxifen since. Yesterday she was diagnosed with Mets to her liver, bones and lymph nodes. At the time of the mastectomy they thoroughly searched the tissue and showed it was DCIS. She is having her liver biopsy today to get the complete picture of the situation and she starts chemo on Tuesday.

I am scared for her and am having my own struggles with survivor’s guilt. I’ve walked this whole path with her since I’ve been the one to accompany her to the majority of her diagnostic appointments. I’ll be taking her to the biopsy today. Her mother died of MBC when my friend was in college (but genetic testing came back negative). My friend has 2 young children (8 & 5).

I’m searching for stories of others who went from what they believed to be DCIS to Stage IV and have had longer survival rates. I so badly want her to see her children grow up. I was supposed to be “the difficult one.” My cancer was worse. This is all just so frustrating

exbrnxgrl

MsLin,

Very sorry to hear about your friend. This is a very uncommon situation, but not impossible. All it takes is a single invasive bc to wind its way through the bloodstream and open up shop in a distant organ. So it is quite possible that everything found in the breast is DCIS, that nodes are clear but a rogue cell became invasive and traveled through the bloodstream.

I don’t know of any research to show that initial diagnosis of DCIS, which is not invasive, has any bearing on longevity once one becomes metastatic. Remember, she didn’t go from DCIS to stage IV. At some point a cell or cells went through a change, became invasive and moved to distant organs.

I will hope for the best for your friend. BTW, with what is currently known, those who have genetic mutations that might pre-dispose them to bc are the minority, 15-20%.

OhioNana1605

I'm sorry to hear about your friend. I had 2 lumpectomies in 2013 for DCIS stage 0 and radiation. Told chances were about 10-20%. Had mamos every year since. March 2021 diagnosed with MBC mets to liver, all + stage 4. I had a breast biop and it was positive and told it was so close to scar tissue it didn't show up on mamo. Quite a shock. Several masses in liver. May started treatment of taxotere, herceptin & perjeta. I am 75 and will make decisions based on side effects and response. I'm also not good at posting on here or reading others. Best of luck to you both.

Anonymous

What will (help) determine her (potential) longevity is what the distant mets hormone markers turn out to be, rather than going from DCIS to Stage IV. Some are more favorable than others but again, this is Cancerland where cancer doesn't play fair and there is currently limited (no) knowledge as to why some are super responders rather than others. It comes down to many variables in biology and response to medication, some of which are known, many of which aren't. The best you can do is support her as she moves through the stages of acceptance of her diagnosis - she will be angry, upset, asking "why me?" and eventually will come to a level of acceptance. It will take some time, but once she stabilizes on a treatment and can see it is possible to live, and in some cases live well, while managing Stage IV things will settle down.

You are a good friend for being there for her, and she is lucky she has someone to lean on who knows how this whole circus goes. I would encourage you to look after your own mental health too, though, and address the survivor's guilt if you think you may need to do so. A lot of managing the mental aspect of cancer is dealing with the seeming randomness, lack of control, and future uncertainty and that applies to those both in and out of active treatment.

DivineMrsM

MsLin, I'm sorry to learn about your friend. I don't have any insight on going from dcis to stage iv. But I'd like to address the survivor's guilt you feel. Please try to rid yourself of it. It is only the luck of the draw that she is now stage iv. The diagnosis is so random. This is not a case where a bullet was coming at both of you, you dodged it and it struck her. It is something that happened independently from you and is unfortunately not something anyone had any control over.

It is possible she may still have many years ahead of her. I hope so. She is fortunate to have such a good friend in you. It sounds cliché, but take it one day, one step at a time. Try not to project yourself to far into the unknown future. She may have a wonderful response to treatment. Both of you have my best wishes for all the best outcomes.

MsLin

Thank you everyone for your responses. Yesterday was a tough day. My friend did great during the biopsy despite one minor meltdown. I was in the room when her MO phoned. He obviously didn’t have the pathology report yet, but did say he spoke with all his colleagues in clinic about this case. They all agree this is very unusual. He is very concerned about the rate of progression. She was supposed to start chemo on Tuesday, but he’s expediting it and wants her to start Friday or Saturday. She’ll be on Taxol to start. As she describes it on the PET scan it looks like her liver is on fire. Her liver is also quite enlarged. She is a very petite person, but her midsection has widened which is unsettling.

My own survivors guilt is tough to let go. When I was diagnosed one of my former students was diagnosed the same week. My student was 26 while I was 40. Sadly my student quickly progressed to Stage IV and passed away in 2019. To make matters worse I’m coming up on my 6 month appointment and I’ll be meeting a new MO. My old MO left SCCA last year to become the Chief Medical Officer of the American Society of Clinical Oncology. I’m going from one of the best MOs in the country to someone I don’t know.

Can I just point out the BGO (Blinding glimpse of the obvious) that cancer is stupid and I don’t want to do it anymore

Sunshine99

MsLin, I'm so sorry for what you and your friend are experiencing. Thank you for being there for her. Stupid cancer sucks and I, too, just want it GONE!

I'm glad you're here and hopefully she is on this site, too.

Wishing you comfort, hope and courage...

Carol

moth

ugh MsLin, that's a lot for everyone. I hope your friend's treatment plan kicks in soon

Hopeful_Sarah

Thank you for posting this. How are you doing and how is your friend doing? She is blessed to have you for a friend. I found this thread because I wonder if my sudden-onset bone pain may be related to the DCIS (nuclear grade 3) I had in 2016. I have excruciating pain in thoracic spine also right leg bone pain. As a person opposed to pain meds, am now on them 24/7. Pain worse at night. Also unable to sleep on left side, when I attempted to do so, I experienced a short episode of inability to move , followed by -- how do I say this -- having to wear leak proof protection that night. X-ray and CT showed nothing, then had to wait a month for MRI which was this morning. They say one week to get results.