Cherry Hughes** is an active, energetic 75 year old, still working in the marketing and public relations profession in Great Britain. Her life is filled with friends and fun. “I love cooking and eating out. I am 
deeply interested in politics. I love music …I go to jazz clubs. I love going to France …I have a little apartment there.”
But at 73, she found a small lump near the nipple of her right breast. By June 2016, surgery removed a 30 mm mass, 20 mm of which was poorly differentiated. Three of the five lymph nodes they removed were positive for cancer. Her pathology report had one “bright” spot-her tumor was HER2 positive so she could be treated with Herceptin.
“Cancer is a very emotional disease,” Cherry feels. “It conjures up unspeakable fears.” She followed her oncologist’s advice and started chemotherapy.
“I had one shot, I was very sick,” she explained. Her oncologist told her that she had to have chemotherapy or she could not have Herceptin, so she did as much as she could. Then “three months of Herceptin left me bedridden. Every injection made me ill. Legs seized up [with] terrible pain.”
So Cherry told her oncologist she didn’t want any more chemotherapy or Herceptin. “I saw some awful sights in the chemo section. I really don’t want to destroy my body with poison,” she said.
Her oncologist didn’t take Cherry’s decision well. “There is an attitude of making one feel guilty if you don’t take the treatment. I think the oncologist finds me difficult…dire warnings were given to me,” she said. On one occasion Cherry asked a nurse in the oncology unit about her decision. “[She] was straight up with me. She said I would have 2-to-5 years with treatment but the same 2-to-5 years without!”
After a “battle” she did have radiotherapy, “My ribs hurt from the radiation; that may never go away. I tire easily.”
Cherry believes that people need to have a choice. “No one wants to explain the damage that all the treatments do. There seems to be a conspiracy of silence amongst the medical profession and I saw a lot of women in distress but saying nothing. Tolerating a lot of pain in the hope they are cured. And fearful if they don’t take the magic potions it will come back.”
Informed Decision-Making
Making an informed decision is about having that choice. And informed medical decision-making is central to the doctor-patient relationship. But it is complex. There are issues around understanding medical terminology, health literacy, health numeracy and understanding of risk. The structure and content of physician-patient communication impacts whether or not patients are informed.
A study conducted in 1999 reviewed audiotapes of over 1000 clinical encounters involving over 3000 medical decisions. An fully informed decision involved several components: “(1) the patient’s role in decision making, (2) the nature of the decision, (3) alternatives, (4) pros (benefits) and cons (risks) of the alternatives, (5) uncertainties associated with the decision, (6) an assessment of the patient’s understanding of the decision, and (7) an exploration of the patient’s preferences.” Decisions were categorized as basic, intermediate and complex. Basic decisions were almost all completely informed, none of the intermediate decisions and only one of the complex decisions were informed.
Physicians’ and patients’ perceptions of clinical encounters may not match. One study utilized patient interviews obtained before meeting their surgical oncologist and after the treatment decision was made as well as interviews with clinicians after the office visit. There was limited agreement 38% between what the clinicians felt happened in the decision making process and what the patients believed occurred.
In a 2015 study comparing patients feelings about truth telling in end of life treatment although 94% of the patients wanted to be told fully about their prognosis, jut 80% of their physicians believed that their patients wanted to know. For those with a terminal illness, almost 90% wanted supportive care but only 15% of their physicians said that that was their patient’s preference.
I wish I had been better advised…
Cherry said.
The cancer treatment process is overwhelming with patients rushing from diagnosis to surgery to chemotherapy…from one treatment to another. There’s little time to figure out what really matters, what they value most in their lives.
Support is crucial for that to happen. Cherry’s daughter is okay with her decision. “She was completely thrown by my diagnosis” but she “said it was my decision. She thought I was wise not to have chemo.” Her friends have also been supportive, “I have good friends, they have been great. I do find that some friends that have vanished. Mention cancer and they run. It’s very bizarre.”
Cherry tries to stay up-to-date with information about breast cancer and treatments. “I question everything. I have read everything, all the medical journals. It makes them [her doctors] uneasy!” she said.
She’s glad she made this decision “My general practitioner said it’s the luck of the draw. You can have all the chemo, all the pills and still it comes or do nothing and you might be okay. No one knows.” Cherry walks two miles a day-with a “stick.” “The treatment has certainly caused damage,” she says. But she adds, “One can’t help wondering if it will recur this is the fear that haunts everyone.”
What do you think? Did your physician or oncologist ask you what matters to you, what’s important to you before your treatment? Has anyone asked you during your treatment?
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**Cherry commented on the Medivizor post, “War On Cancer: The Right Metaphor? That post asked if the language that we use to discuss cancer, “war” “fight” “battle” and how we label people with cancer as “victims” could impact decisions people are able to make regarding treatment. She wrote:
“It’s individual choice how we tackle the disease. The treatment causes a lot of damage. I made an early decision not pursue treatment that made me feel ill …doctors not happy..dire warnings to scare me into more chemo etc. 50 years from now they will look back and laugh at current treatment.”
We reached out to her after reading her comment to learn more about her experience.
I have HER2 breast cancer and refused chemotherapy, three very strong meds. My oncology said my heart would be weaken. I said no thanks my heart is very healthy. Six months later I got a new oncologist. This Dr and I quote,”how long do you think you can drive without a license. I said as long as God wants. I found my golf size lump on April 2013, didn’t panic told no one until June. So far good !!! I have always trusted my guts.
Exactly how I feel about taking TKI drug for CML. There is something to say about quality of life. They lie about the toxicity of the drugs an write what they want in your file an get other doctors pissed at you. They are like used car salesman pressing you to take more drug for the drug companies an investors profits. They don’t want you to think for yourself or make your own choice. They have forgotten about the patient 10 bill of rights. The stress an vicious cycle of health care is worst than the disease.
Can you please tell me about your experience? I was diagnosed with CML in October and all I do is argue with my hematologist for daring to question taking Sprycel.
Hiya Cherry!
I’m Brian Hughes and I’m 76 and live in Germany.
I haven’t got any cancers that I’m aware of but I do think about what I would do.
I have to agree with you – chemo and radiation treatment are not for everybody. And…..at the end of the day, everybody owns their own body!!
Live your life the way YOU want to live it and all the best to you!!
I’m a 16-year survivor of metastatic leiomyosarcoma. I’ve done radiation, chemo and surgeries. I have serious late effects. If you told me 16 years ago that I would go through all that I have, I think I would have opted for no treatment. OTOH, I’ve traveled a great deal and had great experiences with friends and family. I’m glad I had treatment. I agree that everyone must decide for herself. But I think doctors hesitate to tell patients about everything that can go wrong because there’s no balance. There’s no one to tell you all the things that you might enjoy if you lived longer.
Thank you for your thoughtful comment. Best, Kathleen
Although not a victim myself, I’ve had a close friend who went through treatment and from the looks of it, she didn’t have much fun! I mean, I’m glad she’s recovering fine now but seeing her under treatment was really tough.
Posting from my hospital bed where I have developed severe neutropenia from first doxytaxel treatment. I don’t believe I gave informed consent and still do not fully understand the risks of treating/not treating. This is my fourth treatment altogether. I just want to stop now but I don’t know the consequences of that decision.
As someone who’s watched a close friend get destroyed by chemo, I feel there is a conspiracy among medical professionals with regards to disclosure of what chemo does to the body. Most cancer victims go under chemo with the hopes of killing cancer, only for it to return a couple of years later.
I miss my friend Patty.
Honestly, it’s so difficult (if don’t want to say “can’t”) to understand the pain that people suffer from cancer. I really don’t like how media (press, tv program, etc.) talk about them like “a fighter” and idealize their life. Eventually, it’s not a movie that always has a happy ending.
There should be more discussions on the alternative approaches to severe illnesses of all sorts. Euthanasia shouldn’t be gate kept by a gavel or a pen. There’s nothing humane about the way we treat end of life decisions imho.
I get what seems like pages of potential side effects given to me whenever I begin something new. I feel very well informed. I ask lots of questions. I don’t see my doctor like a used car salesman. On the contrary, he is a master mechanic who can keep my car working well. Yes, I’ve had problems, but I choose to see medicines as more helpful than hurtful. Some of the comments above puzzle me as I’m sure mine puzzle others, but I’ll voice mine if only to show the other perspective.
The value that cancer patients find when sharing experiences with other patients is not mentioned either in the article or the follow up comments. I find that extaraordinary. Existing patients, carers to patients who have died, survivors of disease are treasure troves of information, personal experience, understanding and empathy. There is no-one more motivated to help and support patients than another patient.
I implore patients,their carers and families to join a patient founded, patient-led cancer support group. Talk to others who truly understand, read about their experiences warts and all, in their own words, ask questions and get answers from other people who have faced those same decisions and chosen different routes. Realise that you are the most important person in the room making those treatment decisions not the clinician nor nurse. Time to gather as much information and evidence as you can, write down your questions and test your thoughts with your peers, your friends and family and your clinician. Do not rush to the decision unless there is a known medical imperative to do so.
Throughout my last 15 years dealing with 2 types of cancer; renal and breast, my decisions have been informed by the knowledge, love, wit and courage of other patients I have known. The only thing I would change is I would have done it sooner.
I completely agree with you. Online or in person, patients who have “been there” provide wonderful support and connection. Thank you for pointing this out and commenting on this post. Best wishes, Kathleen
Hello to all,
I have a rare form of very aggressive prostate cancer found after a TURP. (Middle lobe of prostate removed). I am retired, active 70-year-old hiking and enjoying my retirement.
Surgery was not recommended because of past abdomen surgeries. I have had
medications, (androgen deprivation therapy -ADT) and 40 radiation treatments to lymph nodes and prostate.
The radiation oncologist told me “this is the only way you were going to survive”.
I was told by the hospital oncology unit that I would be tired but it was hard to believe how tired I became. It’s also hard to believe how depressed I was because of the medications.
I went from hiking in the mountains to bed sleeping 16+ hours per day over a course of 2-4 weeks. Getting up to go to radiation and then home to bed.
While undergoing radiation, a social worker stated that another patient wanted to start a prostate cancer support group. We had the first meeting with only three patients and it was amazing at the similarities. One patient was doing well six years later. Another patient had surgery but has had a reoccurrence. Now he is debating on having radiation.
There are support groups for breast cancer and other forms of cancer but, were no support groups for prostate cancer in our small city in southern Oregon until now.
I am now one week post radiation and finally starting to feel a little bit better some days. Other days I want to sleep.
My wife of 45 years has also had breast cancer. She has been incredibly supportive. Family and friend support is the only way to get cancer patients through the initial stages.
It is blogs like this that tell me there is a commonality between all patients with cancer. We all need support. I will continue to participate in the local prostate support group.
The topic of quality versus quantity of life is in front of me at this point. Morbidity versus mortality.
The first set of decisions have been made and more will need to be made in the future.
Personally, if a future treatment that costs a great deal of money will only prolong my life for a few months, I would rather not take the treatment and have my children and grandchildren use the money for their education.
Thank you for your thoughtful comment. Best wishes to you and your family, Kathleen