DCIS 2 years ago, diagnosed at stage 0, now stage 4

lynnste

Hi All,

My best friend was diagnosed 2 years ago with DCIS. She was 37 and diagnosed with stage 0. No lymph nodes tested positive. She underwent a double mastectomy and was told no chemo or radiation was needed and chance of recurrence was 1%.

Fast forward to today. She is 39, just gave birth to her 3rd child last week, and during the late stages of pregnancy (1 month before due date) began experiencing gallbladder symptoms. She went in for an ultrasound and they discovered 2 lesions on her liver as possible metastasis from the previous breast cancer. She went in to her surgeon's office this week on Tuesday, they discovered a lump in her armpit and biopsied it. It tested positive for DCIS. Yesterday, she went in for a PET scan and it revealed stage 4 metastatic cancer (armpit lymph nodes, lymph nodes all down her right side, and 2 metastases on her liver). The doctors were baffled as this is presenting differently than DCIS usually presents. They are going to do an MRI next week to try and figure out more.

All of this is obviously very overwhelming for them right now as they were told this kind does not metastasize. They are trying to figure out the next steps while wading through the diagnosis. I am here to ask for help on their behalf. We want to do everything we can to help and lessen their burden as they go through this. Has anyone had a similar experience? Are there any great treatments that have proven successful for anyone here with advanced breast cancer? Is there a fantastic place that specializes in this type of situation? I'm asking, because we have not been down this road before, but some of you may have and may be able to offer some valuable information and hope. Thank you so much in advance for any help you can offer.

Annette47

When DCIS recurs, 50% of the time it recurs as invasive cancer, which sounds like what has happened to your friend. While this is known to happen, it is so rare that I doubt anyone on the DCIS forum will have much advice.

The ladies in the Stage IV forum, even though most did not start as DCIS would be more likely to have some good advice for your friend, so maybe try there? Here’s the link: https://community.breastcancer.org/forum/8

Sending good thoughts for your friend ....

Longtermsurvivor

Hi Lynne,

How surprising and agonizing for your friend, especially as we would rather she were celebrating the new baby, not dealing with metastatic breast cancer.

Yes, DCIS can become invasive and spread. There may have been undetected micro invasion two years ago that "seeded" the new tumors. And pregnancy can accelerate some hormonally sensitive cancers.

Can you let us know where she is and whether her cancer has been checked for hormone sensitivity and HER2 status? Treatment options will expand or contract based on these variables. We'd like to point you and her in a good direction. What works for some, doesn't work for all!

Thanks for being a good friend!

warmly, Stephanie

scuttlers

seconding what Stephanie says. More information will help.

DCIS, by definition is "ductal carcinoma in situ". Which means it is in place, and not moved out to a different area. Therefore, now your friend has metastatic ductal carcinoma. No longer DCIS. Treatment options for DCIS would not be viable in her current situation.

My advice is to get as much information together and to get second, even third opinions from major cancer centers. I do not know her location worldwide, or in the states. My favorite is MD Anderson, there are awesome facilities all over the US. UCLA, Johns Hopkins, Brigham and Women's, Phillidelphia, Sloan Ketering, Seattle Cancer Care Alliance, Fred Hutchinson, to name a few.

Get as much information as she can, discuss treatment options, decide on a plan, and made informed decisions. You have come to the best place for peer suggestions and help. Enlist professionals, stay on BCO (she needs to come here), and start the plan. Once these are in place, she will be in a better place. It is very overwhelming right now for her. You are a good friend.

lynnste

Thank you SO much for your replies!! It is so wonderful to see long time survivors! This gives me hope. We are in MI, but they are willing to travel if needed to get the best treatment. I don't know about the HER2 or hormone sensitivity. I will ask and get back on here. I will also try to encourage her to come here and start an account. I know she is scared and feeling hopeless right now. She is trying to stay positive and find hope, but I know she is having a hard time. She has always been an extremely health conscious person and had hoped for decades with her children. Now she is hoping that through treatment, she could have a few years or maybe even one decade.

Thank you again for your help. I will find out what I can. She may not know those answers yet until the tests next week, but if she does, I will post here right away.

lynnste

They just told me that they do not know the tumor receptor status yet. I will let you know when I know. Thank you so much!

txmom

Hi so sorry to hear about your friend. I go to MD Anderson in Houston.  It is a top notch facility.  She can have testing done there and then have the treatment plan carried out in MI.  I  know scrunchthecat lives in MI so you might want to PM her about where she goes and what she recommends.  I know it's so hard.  Once she starts a treatment plan she will feel better.  I read Radical Remission when first diagnosed.  It was really helpful because in the beginning, it's so  traumatizing you just look for a little hope. Hugs to you and your friend.

pajim

lynnste, her "overwhelmed" feelings are perfectly normal. Not to mention a new baby!! Tell her that things will get better. Really. Once she knows more about what she's dealing with, and starts treatment, she'll feel better.

As was said on another thread, this is a marathon, not a sprint. Assure her that she is not going to die today, tomorrow, or next month. [and probably not for many years.] Seriously. If she thinks of it that way she may find it less overwhelming.

If you are not in an area with an NCI cancer center, I suggest a second opinion at one. Many ladies have an oncologist at a big cancer center who helps them put together a treatment plan. Said treatment plan is then carried out locally. Drugs are drugs, no matter where you are. It's deciding which ones to take.

You're a good friend and I wish your friend all the best and all the luck.

txmom

Hi, sorry it's shutterbug73 that lives in MI not scrunchthecat.

ibcmets

Lynn, maybe she can go to Northwestern Hosp in Chicago.\

She will especially need help w the baby. She should gather a support system of family & friends to help e appts., baby & meals.

Terri

lynnste

They had been going to Goshen for the previous stage 0 and then again now for diagnosis. Does anyone know anything about that one? Is it good as well or should they try one of the other ones mentioned?

Kaption

Your topic caught my attention. My first bc was in 2005, left side DCIS, lumpectomy and rads. Docs kept a close eye on me- fortunately not buying into "it's not cancer." I was 56 at that diagnosis.

2012 was bc number 2. Right side-DCIS. I chose to be aggressive with this and got a double mastectomy. Lymph nodes were checked- all clear.

2013 my back started hurting, like muscle strain. It kept getting worse and wrapped around my left pelvic area. I thought maybe my one remaining ovary was acting up. Scans found widespread metastatic bone mets- spine, ribs, collar bones.

My MO thinks it could have been BC #1 that metastasized (with Tamoxifen keeping in check for 6 years). My RO believes it was #2. It really doesn't matter.

I'm treated now like any other stage 4 cancer patient. Had full chemotherapy and now trying various treatments to keep going. I had additional trickiNESSin that my HER2 status is borderline and changed from + to negative.

I echo the recommendations to find an NCI center. I'm in KS and have KU med once. The ones I've had had been great. Also lots of clinical trials going on.

Best wishes to your friend.

Shutterbug73

Hi Lynnste - I'm so sorry to hear about your friend. I'm sure it was a terrible shock. Is she in Michigan? If so I'd be happy to elaborate on the facilities that I am familiar with in the SE area of the state. She is lucky to have a friend like you looking out for her

lynnste

Hi, thanks for responding. Yes, she's in Southwest Michigan. She had been going to Goshen. Do you know if that's a good place? How has your experience been in SE MI? Thanks again.

kaayborg

These stories of DCIS aggressively treated and still metastasizing are just infuriating to me. Not supposed to happen and yet, STUPID cancer! I recently read an article in Time magazine about a recent push to do nothing about DCIS but keep close watch. I'm thinking not a great idea.

I was 37 and stage 1a IDC, triple negative, clear margins and nodes and chose the more aggressive bilateral mastectomy with chemo over the lumpectomy with radiation and chemo. Pathologist found no additional cancer in either breast. 7 mos post chemo, 38 years old and over half my liver is mets. My story is rare and then here are two even crazier cases. Well, it has been a good year mets or not and tomorrow I am 39! It will get easier for your daughter. The beginning is the worst. I thought I'd be dead already. Now I feel much more hope, though of course there are days when I feel differently.

Shutterbug73

Lynnst- I'm not familiar with Goshen. I do know that UM in Ann Arbor and Karmanos in Detroit are NCI (National Cancer Institute) designated hospitals. I made the decision to go to St Joseph in Ann Arbor because I like the smaller hospital, but I did get a second opinion at UM because I wanted to get my information into their system. They agreed with what my oncologist is doing, but If I need to change treatment in the future or if they have a trial I am interested in I can always go back. Your friend may want to seek a second opinion at one of those hospitals and see if they have anything additional to tell her. She can still get treatment at the hospital closer to her. Often both oncologists will work together.

lynnste

Liver biopsy came back as 1 of the 2 spots breast cancer. The other is a lymph node. The lymph node they tested in her armpit came back HER2 + and only 5% hormone positive. The doctors are baffled because they thought they got it all, but it's the same cancer that she had initially. She is going to get a second opinion at Mayo. Is Mayo one of the best? Thanks again for all of your help and input. It is so valuable.

Carlsoda

Mayo is very good! Good luck to your friend....(((hugs)))