Hannah’s Story

Prof Hannah Fry[i] is somewhat of a celebrity in the UK. She is a mathematician, a best-selling author, an award-winning science presenter and the host of numerous popular podcasts and television shows.

In January 2021, at age 36, she went for a routine cervical smear test. Abnormal cells were detected. Further testing confirmed cervical cancer:

·       The tumour was quite large (the size of a “gobstopper”)

·       There was a concern that her cancer may have already spread to the lymph nodes.

Radical treatment:

She was treated with radical surgery; mostly, she says, because once she was referred to Guy’s Hospital, she was presented with only two options:

·       The first was the removal of just her cervix, leaving her womb and lymph nodes intact. This allowed for the possibility of the third child she and her husband wanted. But at the risk of the cancer spreading.

·       But there was the concern about the enlarged lymph nodes. The second option, therefore, was the removal of everything (including the lymph nodes), to be safe. A radical hysterectomy.

‘I didn’t push it,’ she says of the telephone conversation in which she had to decide. ‘I think partly because it was the pandemic and it was a phone call and I think if you are brought up in Britain, well, I am trained to be grateful and not want to waste the doctors’  time. I really didn’t want to ask more questions. It was “we have a slot for you in three weeks to be on the table. It’s a good slot. Do you want it?” So, the surgeon opted for maximum risk reduction – a radical hysterectomy. The cancer was totally removed         .

The lymph nodes, though swollen, turned out to be cancer free; but were all removed so that they could be tested.    Given this outcome, no more treatment was required. She was effectively cured.

But there was some regret:

Despite the good outcome, Hannah does have some regret. Firstly, she lost all chance of having another child. But, further to this, she went on to develop lymphedema, a lifelong condition caused by the removal of the lymph nodes. She was not prepared for this.

Today her legs swell from undrained fluid and she has to wear pressure garments, tights or shorts, for the rest of her life. “There was a time last year when I was just recovering from everything and emotionally bringing myself back to life, and the lymphedema was a real hit, a real blow.  I felt very angry about it,” she says.

Reflecting on this, Hannah comes to a very important conclusion:

"When making a treatment decision one only has 15 minutes with your surgeon. This is what we think? The risks are this, this, this and this. Stats and information thrown at you. Instant decision or decision made for you, and off you go”.  “For the doctor it’s just their 9 to 5, but for the patient it’s the point where their whole world has just fallen apart. You need the confidence to be able to say no, just stop; I need to think about this”.

Dr Eric Winer

But it doesn't have to be like this. Let us move on to what a very eminent US oncologist had to say recently.

Eric P. Winer is a medical oncologist and clinical researcher specializing in breast cancer.  He is director of Yale Cancer Center and physician-in-chief of Smilow Cancer Hospital at Yale New Haven Health. He also is Deputy Dean for Cancer Programs at the Yale School of Medicine. And during the 2022 Association of Clinical Oncology (ASCO) Annual Meeting in Chicago, he began his tenure as ASCO’s 59th president.

Dr Winer chose as his presidential theme “Partnering with Patients, the Cornerstone of Cancer Care and Research.”          In his presidential address he motivated his choice of theme as follows[ii]:     

“My presidential theme builds on my oncology career of more than 30 years and resonates with many of the challenges in oncology today. The theme promotes the pre-eminence of the relationship between the patient and the oncology clinician, which should be neither hierarchical nor unidirectional. Some oncologists harbor concerns that they don’t have the time to establish a partnership with each of their patients, and I understand their apprehension. But I believe we must form these partnerships if we want to provide the very best cancer care. 

So what is the Nature of this Partnership?

In an associated interview with Web MD[iii] he describes this partnership:

"And I guess the way I like to think of this is that the medical team is an expert in the medical treatments. The patient and sometimes the patient's family is an expert in the patient. And it takes putting together both the medical judgment and the knowledge, the very in-depth knowledge about the patient, that leads to the right decision.

He continues:

"Now I think one part of this is that as a physician, when you're trying to make decisions with a patient about do you want to do treatment A or treatment B and thus does one decision or another make sense, you can't just make that decision without knowing something about the patient, knowing how old the patient is, what the patient's family situation is like, and perhaps most importantly, what the patient's preferences are.

Do they want to take any possible treatment if it will increase their chance of remaining free of a recurrence of cancer by any amount.

Or are they somebody who would say, I don't want a treatment if it has any substantial chance of causing neuropathy or numbness in the fingers or toes because I need to use my hands for my work, and my work is critical to me.

Or is it a patient who says, I don't want to take any treatment that's going to interfere in any way with my spending time with my children and being able to take them to their appointments and do everything that's necessary for their care.

So I think the best decisions come from a dialogue that goes back and forth".

But there are Obstacles

1.       Firstly, the playing field doesn't feel even for the patient (remember Hannah saying "I am trained to be grateful and not want to waste the doctor’s time"). Here is what Dr Winer has to say about this:

“The patient sometimes feels like he or she doesn't want to take too much of the doctor's time. They don't want to make the doctor upset. And I think that perhaps patients should worry a little bit less about that, and should feel pretty free to say what's on their mind and express their concerns, and not keep information from the doctor or the nurse that could be helpful in developing the partnership”.

2.       And then there are external pressures on the partnership.

Winer affirms these to be problems:

“The challenge is that health care systems, third-party payors, and leaders in oncology also need to value these critical partnerships and provide clinicians with the flexibility and freedom to establish them.  Unnecessary tasks abound in our work lives.

·       The need to obtain prior authorizations,

·       The regulations leading to excessive documentation in clinical care and clinical trials, and other similar activities deplete all of us.

·       The incessant mouse clicks and the ever-mounting electronic signatures need to be reduced.

Winer goes on to acknowledge these as work in progress:

“This year, ASCO’s board retreat focused on clinician well-being. As a powerful convenor, ASCO can advocate and help ensure that clinicians spend their time diagnosing, treating, and establishing relationships with patients. You will hear more in the future about these efforts but be confident that our Society is determined to have an impact on our capacity as clinicians to develop effective partnerships with our patients. In this way, we will ensure the best care for all individuals with cancer, the success of clinical trials, and the well-being of the workforce”

So where does this leave us?

In a recent book[iv], USA Today bestselling author David Chill relates a 10 year journey with stage 4 lung cancer[v]. It is a book with many learning points, but the line which really stood out for me was[vi]:

“Choosing the right oncologist is one of the most important decisions

a cancer patient will ever make”

You are looking for a doctor not only with the appropriate clinical excellence, but also someone willing to partner with you in navigating through your cancer journey.

This is particularly true for those with a long journey ahead with an advanced (“Bad”) cancer. But as Hannah’s story showed, there may even be regret after a cured “Intermediate” if the partnership relationship is not observed.

[i]  I first learnt of Hannah’s cancer story on the BBC 2 TV documentary: "Making Sense of Cancer with Hannah Fry" (unfortunately, because of rights isuues, this documentary is only available in the UK). You can also find her story in the podcast, The Orchid Room and Cancer - with Hannah Fry

[ii]  2022-2023 ASCO President Dr. Eric P. Winer Makes Partnering With Patients the Cornerstone of His Presidential Term - ASCO Connection June 2022; and  2023 Presidential Address — Partnering With Patients: The Cornerstone of Clinical Care and Research - ASCO Connection June 2023.

[iii] ASCO President Eric Winer on Patient Partnerships - Web MD, June 2023

[iv] Chill, David. ‘Stage 5: A Cancer Journey”. Cold Spirit Press.

[v] He was found to have the targetable ROS1 mutation which can be chronically controlled. You can read more about ROS1 and lung cancer in the story of Janet in Blog 1.

[vi] Here is his full quote: “I think it’s safe to say that choosing the right oncologist is one of the most important decisions a cancer patient will ever make. It is not unlike entering a relationship. The majority of your joy and misery for many years can emanate from that one crucial move”. Chill, David. Stage 5: A Cancer Journey (pp. 153-154), Kindle edition.