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Wife diagnosed Stage IV de novo:


This thread was started as a response to member KBL's question in another forum about those diagnosed with stage iv ILC de novo. But that forum is for stage iv patients only so I could not post there.

I am contributing on behalf of my wife who isn't really keen yet in participating in support groups. As her caregiver I feel it's my duty to be as knowledgeable as possible which brought me here.

We too began this journey quite unexpectedly and very recently. My wife began having recurring stomach pain in October of 2022. Not all the time and not every night, but about every two weeks a pain right in the center of her gut would wake her up at night and keep her awake for several hours. It occasionally led to nausea and vomiting but only rarely. I'd had gallstones years ago and thought it sounded similar so we were not too worried. In January 2023 she finally had enough and went to her primary care manager who ordered a bunch of blood test and referred her for a CT scan of her stomach. Her blood work came back showing she was quite anemic (macrocytic anemia specifically) and the CT showed moderate thickening of her ascending colon and mild ascites. An MRI showed a lytic lesion on her spine in the thoracic region. So she was referred to both hematology and gastroenterology.

Initial non-invasive screens weren't helpful so she was set up for a bone marrow biopsy and some scopes (colonoscopy, endoscopy, and endoscopic ultrasound).

We found out on 6 April that she has invasive lobular metastatic breast cancer which biopsies of her GI tract found in both her upper GI and colon as well as her bone marrow. No prior symptoms of breast cancer. No family history. And thus far, no genetic predisposition. They subsequently ordered mammogram, breast MRI, and breast ultrasound. None have detected any hints of cancer. Cancer is ER+, PR+, and HER2-.

She is only 43 and pre-menopausal. So she was started on goserelin (Zoladex), ribociclib (Kisqali), letrozole (Femara), and denosumab (Xgeva) all just over 2 weeks ago. She had blood drawn about 10 days after starting which showed both tumor markers were already declining (CA 15-3 and CA 27-29) so that seems like a good sign. Her blood counts have also gone down but that is to be expected with ribociclib. Side effects haven't been too bad. Some fatigue, insomnia, headache, dizziness, and nausea.

Docs figure she's had this cancer for years without detection. I assume that means it's pretty slow growing and not aggressive. If she could thrive for years without treatment we're hopeful that with treatment she'll do even better.

The first week following treatment was rough. All the stages of grief. But we emerged from that and realized that while this disease may kill her, it won't kill her today or tomorrow and we have life to live. We have three kids who are all still in the house (oldest graduating this year). For the first week I couldn't look them in the face without crying at the thought of what grief and heartache their futures hold. Fortunately that passed.

I have little doubt that the oncologist we are seeing is good and is treating her with the best care available, but we do have an appointment on the 11th of May with MD Anderson in Houston for a second opinion and to open the door to subsequent treatment options (including clinical trials) for if/when things progress. We are also moving to the northwest this summer so may seek treatment at Fred Hutch in Seattle if necessary.

At any rate, she is like many of you who never saw this coming. Diagnosed at stage IV right out of the gate with limited treatment options available and no source of primary cancer discovered. Given that it's ILC she has, it seems it is also less receptive to either chemo or radiation so endocrine therapy is her best hope.

I have read many of your entries and will continue to sort through them over time. It is amazing and inspiring to read your stories and your hope gives me hope. Whereas we first thought of the diagnosis as a 'death' sentence we are slowly starting to view it as a 'live' sentence, as in, get busy living for the time may be short.

I hope you all have a blessed day and I look forward to further conversations in the future.


  • mojos
    mojos Member Posts: 30

    Welcome to the club you didn't want to join. It sounds like you are getting good care with options for a second opinion which is a good idea. Stage 4 is not a picnic but with new treatments coming along on a fairly regular basis, it is possible to think of this as a long term illness.

    Your wife might be interested in the weekly online support groups for stage 4 and/or you might be interested in the caregiver support group. I am part of the Monday zoom group and am grateful for that.

    Do keep posting as folks are very generous in sharing information. I have invasive ductal so my treatment differs from your wife's.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,747

    We are sorry that your wife is joining us but this is definitely a good place for stage IV members to hang out. Let your wife read through bco and she may be inspired to join in.
    I am about to hit my 12 year anniversary at stage IV that was essentially de novo (long story) and has not progressed since . I think that you will make a rotten situation infinitely easier with the attitude you seem to have already developed. Remember that you don’t have to be positive all the time and days that suck will happen. None of us has a crystal ball and stage IV is challenging enough without borrowing trouble that may or may not come. My particulars are different from your wife’s but I had no idea I’d be doing well this far down the road. I also know it can change in a heartbeat so I try not to worry about things I have no control over. Take care