How Breast Cancer Comes Back: 10 Things to Know

/ Beth White Thompson

The news that Olivia Newton-John’s breast cancer has returned, a full 20 years after her original diagnosis and treatment, has many wondering, How does this even happen?

A diagnosis of stage IV, or metastatic breast cancer (MBC) brings with it a life-changing and ongoing process of grieving and adjustment and treatment changes. This can be very isolating, especially when friends and family don’t understand what is happening and what to expect.

Here are 10 things to know, so you can support a sister going through it.

  1. Cancer can be a fugitive. In the treatment of early stage breast cancer, surgery (lumpectomy or mastectomy) is done to remove the tumor cells from the breast. Sometimes, these cells are fugitives who leave the breast, traveling through the body and looking to adapt and set up someplace else (most often bones, lungs, liver, or brain). We don’t yet have an ankle-bracelet-type system so that we know where they are, and what they’re up to, before they cause a problem. This is why surgery is most often followed by systemic therapy, such as hormone therapy or chemotherapy; think of it as a sweep to pick up bad guys who may or may not be out there.
  2. “Why don’t they do more scans?” Even the most sensitive imaging available today won’t detect these cells when they are few in number and just getting started. Clinical trials have shown that scans after early-stage breast cancer treatment decrease quality of life – ask any cancer survivor what “scanxiety” feels like – and, most importantly, don’t extend survival. Following cancer treatment, monitoring symptoms is the best way to know if there’s a problem; pain or other symptoms that persist for more than a couple of weeks should be evaluated by an oncology or primary care provider.
  3. The cancer never really left. When breast cancer “comes back” in another place following diagnosis and treatment for early stage disease, it is because those cells have actually been there, quiet, the whole time. This is why breast cancer doctors avoid proclaiming their patients “cured”, why even early-stage survivors often struggle to shake fear of recurrence, and why five years breast-cancer-free is sometimes no guarantee. Aggressive, fast-growing cancers that have spread can’t go too long in their new home without causing trouble, so tend to show up within 3-5 years. More slow-growing, less aggressive cancers can stay under the radar for longer periods of time, even as long as 10 or 20 years.
  4. “So if it’s in the bone, is it bone cancer?” No. Looked at under the microscope, the cells are still breast cancer cells; they have just learned to adapt enough to grow in this new place. The thing that makes cancer cancer is its ability to be a shape-shifter, to change and adapt and learn to grow in a way and in a place that it was never meant to be.
  5. “That’s why I would have a double mastectomy.” Unless there is a known genetic mutation (such as the BRCA1 or BRCA2 gene) having both breasts removed does not increase a chance of a cure or prolong survival. While this choice has recently gained popularity, particularly in women who have already been diagnosed a young age and want to decrease the chance of getting another breast cancer over the course of their lives, surgical choice has no effect on cells which may or may not already have escaped the breast.
  6. Metastatic breast cancer is treatable but not curable. Once the cancer has spread outside of the breast, it is no longer curable, though there are often many different types of treatments available, and current clinical trials promise many new treatments in the future. MBC patients can live with their disease for a long time, in a way that is not exactly the same but is most easily compared to living with a chronic illness such as diabetes or lupus.
  7. “But you still have your hair.” Increasingly, breast cancer treatments are tailored to the specific characteristics of the tumor, and many powerful and effective treatments, such as hormone therapies and targeted therapies, do not cause hair loss. Hair loss is not a good indicator of stage or extent of disease or response to treatment.
  8. “When will your treatment be done?” MBC patients will remain in treatment for the remainder of their lives. Often, the cancer continues to shape-shift and adapt around treatment, eventually making previously effective treatments ineffective, and requiring changes to the next type of treatment.
  9. “I saw a new miracle treatment on Facebook….” Flashy news headlines and social media posts often include findings still in the laboratory, lacking scientific rigor, or not proven in clinical trials. Instead of sending new ideas which may add to her anxiety, support her by checking in before her scan to acknowledge that it may be an anxious time; ask her about how the new treatment feels as compared to the last one. Let her know that you support the treatment decisions that she and her provider are making together.
  10. It’s hard when your friend is hurting and you don’t know what to say. She may be social and herself one day and withdrawn and unresponsive another. This is how it goes. Keep letting her know you’re thinking of her without needing or expecting a response. Make specific offers of help: to bring milk and bread by on your way home from the store, to pick up her girl on your way to the pool. Let her know that you’re there for her for the big stuff, like doing the ugly cry about her fear for her children, or the little stuff, like chatting about normal things, without dwelling on cancer. Channel a bit of her courage and sit with her, listening carefully to what she is saying, hearing where she is today, and what she is going through. And when you don’t know what to say, just being with her to bear witness, understanding that sometimes, there are no words.

#52for52 (1/52)

15 thoughts on “How Breast Cancer Comes Back: 10 Things to Know”

  2. My mum has had MBC for four years and is doing great. I wanted to share her experience, although it’s frightening, to make people aware that they may have to push their doctor to explore any new pains.

    Mum had a mastectomy 22 years ago, a hysterectomy a few years later and then no problems for many years. After 10 years, her oncologist said he no longer needed to see her annually. We were all very pleased.

    Then, 16 years after the original cancer, she got a tight feeling all around her chest and a dull ache in her back. She told her doctor, on several occasions, but nothing was done. This went on for 18 months, by which time she was using quite a bit of over the counter pain medication daily. She started to get tingling and pains in her legs. My sister and father pushed the doctor and finally a letter was written to arrange an X-ray.

    That weekend she fell, and her left leg stopped working. They called the doctor, who said they couldn’t do more and she should wait for the x-ray appointment. Her right leg followed suit, whereupon my sister took her to A&E. A scan of her lower back revealed nothing and they tried to discharge her, but my sister dug her heels in and refused to take her home. Despite Mum making it clear that she was convinced this had something to do with the pain in her upper back, they refused to do a scan of her upper body.

    She lost feeling in her pelvis.

    My sister was calling me with updates (I was over 200 miles away at the time.). Hearing about the loss of feeling in her pelvis, I said, “Are they just going to wait for it to reach her chest and stop her breathing?! “. While I arranged to jump in the car and travel down, my sister made herself a thorough nuisance and eventually a scan of Mum’s upper body was organised. By the time I arrived, the tumour on her spine – at T5 – had been identified and arrangements to transfer her to the Royal Orthopaedic Hospital were being made.

    ROH were wonderful. Emergency surgery removed most of the tumour. The surgeon said he’d stopped the progression, but couldn’t say how much she would recover.

    After a three month rehabilitation, Mum left hospital in a wheelchair. She’d regained control of her pelvis and could stand with support. Determined that she’d walk again, she asked the neurosurgeon for more help, and he arranged for her to see a consultant at Stoke Mandeville. She was admitted for a one month stay. She arrived in a wheelchair and left walking with sticks.

    These days she only uses a stick for walking around town. About the house she needs no support. She is taking anastrozole and is trialling another drug, injected once a month. She sees the oncologist every other month and has annual scans. So far, all is well.

    The reason for sharing her story is that, had the doctor recognised that tight feeling around her chest for what it was, a secondary tumour to the original breast cancer, and had it investigated at the outset, she would never have had to go through that paralysis and all that ensued. A less determined lady would have still been in a wheelchair, and frankly, anyone with a less determined daughter would probably have died, or at best become quadraplegic.

    We discovered afterwards that spinal tumours are one of the more common secondaries to breast cancer, and our health authority has now undertaken an awareness programme so that doctors in primary care recognise the symptoms and know to act straight away.

    I hope that everyone reading this never has cause to need the information. But by sharing mum’s story I hope more people become aware that, if you or a friend have had breast cancer, however many years ago that was, then unexplained pains must be investigated promptly.

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  4. Great article! I recently lost my sister to stage 4 breast cancer. She went through this battle for over a decade. Check out my blog. Love Each Day –
    “The Heaven Telephone” summarizes her journey. I’ve dedicated my blog to her. This cancer hell is so unfair. And seeing someone you love take her last breaths right in front of you is beyond tragic. I miss her so much!!
    Thanks for sharing!

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  5. I really don’t understand. I’m worried and confused, will someone please explain this to me? I had 1st stage breast cancer a 2cm lump in right breast. I had a double mastectomy and 4 lymph nodes removed. 10 days after the operation the consultant told me I was cancer free, that the lymph nodes were clear. I have been cancer free for 6 years. I didnt need chemo or radium. I take extemestine daily and have done for the past 6 years. Does it mean that that cancer cells havent travelled to other parts of my body if the lymph nodes are clear. I was told that i had the sae chance as any one else of getting cancer again. But now it seems that I could have cells lying dormant. Please someone explain to me.

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  6. Pingback: That little voice “what if my cancer comes back” – Being Dense

  10. All so true! Thanks for sharing!
    I have MBC- doing well and current treatment very effective. It recurred 10 years after early stage diagnosis. I can relate to your bio where you said you field texts from three grown children and still have a daughter at home. I do the same:) But it is a great time of life to be in, watching the older children branch out.

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