Stage 4 2013-present

I am a 49 year old woman diagnosed with Stage 4 metastatic cancer diagnosed in 2013 the first time. I was always a stage 4 from the beginning. The cancer was in my breast, lungs and liver at first. I had IV chemo, 7 surgeries, oral chemo and radiation therapy. I went for a time through a short remission until June 2016 when my cancer had spread system-wide. I have ER/PR positive HERS-2 negative cancer which is the most insidious of cancers because it like to break off and travel to my entire body. 2% of women who have cancer have this type of cancer. The original cancer was breast but it morphed and exploded. So the choice to have the left breast and lymph nodes where not a factor in my treatment to worry about.

When I came out of remission, I did whole brain radiation treatment, Infusion chemo, and oral chemo.

When I was having brain treatments, I was told at the time that I would have maybe inside a year left. I was then given the option of stopping all meds and coming to terms to my demise and then given the number of Hospice. They wrote me off. No options. I felt intense anger and decided to go back to my original Oncologist from 2013. I found out on Thursday from the one health system, then called my original doctor for an assessment and talk about my options and if I had any. When I had my appointment the next day, he asked what I thought and was I ok with it. I asked him honestly if I had any choices I could make and what a course for me could be. At that moment I had to fight. I asked him all about treatments current and up-coming that may work. I also asked him if I could live with chronic cancer as if I diabetes or MS. He told me I could enjoy survival if I did my meds, treatments, stayed on top of my symptoms, and made my cancer journey my new job.

One thing that I am so grateful about is finding my person who never made the choices for me, told me the truth and finding a doctor who I trusted without hesitation.

This journey is very hard on families and destroy them. Spouses leave, emotionally abandon the patient, or just check out. I have many stories of women divorcing and detangling because of the stress. Fortunately, this was not in my case. My husband became my care-taker, mentor, support system, and champion.

This is all hard for a spouse, but can you image a 15 year son who most of his life had a chronically ill parent. I am amazed by his resilience and stamina. Every day I worry about how my son is coping, but I have allow him to handle best for himself. I can only support, love, be present and give each day the best and intense way I know how.

The daily life of a stage 4 metastatic is tiring, stressful and a balance act. You have tests, labs, x-rays, appointments several times a week, several doctors for all your ailments, side-effects, and whims. I had 19 doctors all at the same time and conflicting opinions at times. I finally said enough is enough and went back to the doctor that I should have never left in the first place.

5 Replies

oldestnewest
  • fmlyhm0, Your choice to return to your original doctor sounds like it was a good option. I find it very important to have a good relationship with my oncologist, and I have had a few of them. I can only speak for myself, but if the news is not good, having a relationship of mutual respect helps in receiving that news. I was diagnosed with stage 2 breast cancer in 2003, which spread to my lung and brain in 2007 and 2008. When it first spread to my lung, the doctor had to rule out lung cancer, and the cells of the lung biopsy under a microscope showed breast cancer, which meant that the breast cancer had spread to other parts of my body. Ditto for my brain tumor, which was surgically removed and then the area was treated for targeted radiation. I am HER2+/ER-/PR-.

  • Thank you for sharing This is a fantastic story

  • You one tough cookie. I am to metastatic. Diagnosed with Her2 - and ER/PR +. I was 36, in 2007, when I was diagnosed with stage IV breast cancer in my left breast and bones. It reared its ugly head after 7 beautiful years with out it on the forefront of my mind. My recurrence, diagnosed in 2015, was in the chest and lungs. Then once treatment for that was done on a follow up CT, the report showed a lesion in my shoulder. In case it was osteoarthritis or a 20 plus year old car accident injury coming back to haunt me we waited anotherr 3 months for another CT. Sure enough a met was there. Then I was given another bone scan & MRI to validate the finding. It did and then some. My shoulder, pelvis, rib and vertebrae had signs of mets active and not so active. I then did radiation on the shoulder and hip. I had chronic pain in those areas that called for treatment. After radiation I started new drugs. Ibrance, letrozole and Xgeva. The Ibrance has been taking its toll. It has empacted my WBC & ANC negatively. I have been on it since June 2016. Since then we lowered three times, now on the lowest recommended dose. The drug is taken in a cycle of, 21 days then rest 7, then you take a new cycle. I get CBC every week since it has had such a profound effect on my immune system. I was told last month that I had enough in the tank to live but nothing left to fight anything off including the cancer. Bad news. So I did what I do best research, to find complementary medicine. I had already begun to get the cells up with herbs and vitamins. I had done acupuncture in the past during chemo. I believe it helped. So I went back. My cell count are within the normal level. At the low end of normal but in the normal level. I plan to keep going. I think it has helped.

    I was diagnosed in 2007 and had a brief period of months when I was actually considered in remission. An all clear for me is a cause for celebration but never a cause to let down my gaurd. I was recently told that the cancer lives with me and I don't live with it. A strong formidable woman who I met in a support group told me that. I completely agree. While I live and breathe the cancer rides with me it doesn't take me for a ride.

  • Wow!! Glad you're still around!! That's quite a story but very encouraging.

  • Cancer for now, is the weaker part of me. I plan to keep it that way! Fight but clock off too🌈