Fear of Recurrence

 

The following article features in Issue One of the ST BREAST magazine.

Cancer Survivorship Physician Diana Adams notes that the fear of cancer recurrence is an almost universal anxiety for cancer survivors.

"I would say that every cancer patient at some stage worries about the fear of a recurrence,” she says. “We are doing a study into this fear at the moment and it is recruiting very quickly. I would say that it is important for clinicians to tell patients what their personal likelihood of a recurrence really is, because for some people, it’s very low. Some women will be able to reduce their fear by having all the information and all the facts. Patients and their doctors need to work out whether their fear is a rational one or an irrational one. Some might need to have a plan for what they will do if their cancer does recur.

“A lot of patients need the support of a clinical psychologist, to help them unpackage what’s going on. Sometimes this support is needed when treatment is actually finished. When they are on treatment, they are focused on what needs to be done. At the end they are almost in shock, and it’s a case of ‘What was that all about?’

Dr Diana Adams

 

MONIQUE’S STORY AND THE FEAR OF RECURRENCE

Monique was 49 years old and juggling three teenage children, an extremely demanding job and an ageing, unwell father when she was diagnosed with breast cancer.

That was two and a half years ago. In hindsight, she recognises that she was “incredibly stressed” and had sustained this lifestyle for more than two years.

“I was not getting a break and I was juggling way too many balls,” she recalls now. “I was keeping them all in the air, but I can see now that I was not coping at all.

“I am a high achiever, but I drove myself into the ground. I needed a gun to be held to my head for me to accept that this lifestyle could not be sustained … that gun to my head was breast cancer.”

Monique’s diagnosis was atypical. She had noticed a strange red mark underneath her right breast – it was not a lump, but rather, it appeared as a graze.

She thought she had perhaps scraped herself in the garden, but it did not resolve after about three months.

“It did not go away, but I was massively busy at work. When I went to the doctor, she said it was unlike anything she had seen before.”

Further tests revealed she had stage 1, non-invasive breast cancer (Ductal Carcinoma In- Situ).

“There is not a day that goes by that the fear of a cancer recurrence is not there.” Monique

Doctors also discovered a separate, invasive tumour. The DCIS was HER2-positive; the tumour was HER2-negative. She immediately underwent a double-mastectomy followed by six months of chemotherapy and five weeks of daily radiation.

“I just said I want them both off … I don’t want ticking time bombs on my chest.

“I had my breasts rebuilt at the time they were removed and I had them rebuilt from the back of my legs. Because I had three children in three years and three caesareans, I had a tummy tuck done after my last child, so they could not remove tissue from my tummy, which is what they would normally do. So, surgeons cut all of the tissue and the muscle out from under my buttocks.”

The day after finishing chemotherapy, Monique took on a new job teaching two days a week at a school near her home. She did this for a year and then also undertook further  university studies. Again, she became exhausted trying to hold on to her vision of her former self, before finally admitting enough was enough.

“What matters is how well you walk through the fire.”

Monique chose to retire, but admits she is still struggling with this new identity.

“I feel like I have gone from one life to another life - like sliding doors - with no preparation whatsoever.

“Even though it was 2.5 years ago, I was struggling because I am not the person I thought I would be.

“You are effectively saying, ‘This is the end of the youthful part of my life’. But (stopping work) and being present here is probably the best reward for the people that love me that  have been through this horrible experience with me.”

Monique says the fear of a recurrence is ever-present. She will now remain on hormone therapy for up to 10 years, but says if she was eligible for any new medicine to further  reduce her risk of recurrence, she would “absolutely” choose more treatment.

“When you are having chemotherapy and you talk to people in there … you are constantly surrounded by people who have relapsed. There is not a day that goes by that the fear of a cancer recurrence isn’t there. It is certainly there, but I am a glass half full person. You can’t control what you don’t know and it is pointless worrying about something that might happen to you. All you can do, is do everything you can to reduce your risk of recurrence. If it doesn’t work, you want to know you have tried everything, and given it a redhot shot.  Women should be given every bit of information they can be given to make their own decisions and choose the right treatment path for them.”

Monique