2009 - The Willard hotel conference room
I remember 10 years ago I was sitting in a Willard hotel conference room. I was attending a cancer conference offered by one of the top oncology chemotherapy drug labs in the market. For almost three hours the speakers compared three different cancer drugs. They described how a patient may live longer under each of them, the drug administration process and so on. There was no reference to the patient’s quality of life after the treatment. Maybe, for them, it is enough to still be alive 6 months, or 2 years, or 10 years after the diagnosis!
Why don’t we talk about quality of life after cancer treatment?
It is now 10 years later, and I have not seen an improvement in the analysis when oncologists they discuss or compare cancer treatments. A friend recently said to me: “My cancer diagnosis was shocking, but what is worse is that I feel the treatment, and not the cancer, is what’s going to kill me!”
We hear so often today the stories of cancer survivors, their battles fought and won and all the roads they had to travel to reach that victory. However, there is a darker side of cancer survival, one which is often not explored. Perhaps this is because speaking out against treatments that are effective cancer killers do not make anyone popular. Regardless, we must consider oncology patients who are the vast majority of those who experience delayed negative effects of cancer treatments.
The importance of this topic lies in this: in most cases, patients are not aware that they will have to live with these new symptoms for the rest of their life.
Therefore, we should reassess how we view the "quality of life" of oncology patients who have survived a full treatment routine for any type of cancer.
With the cure of cancer, a new disease begins
Once a patient is discharged from the oncology clinic, it means they have already undergone treatments as aggressive as chemo and radiotherapy, surgery, hormonal therapy, and immunotherapy, among others.
These types of treatment kill cancer. No doubt about it. Sadly, the end of these intense treatments also usher in massive changes in a patient's quality of life.
Surgery brings effects that, in many cases, are not preventable.
- Scarring at the surgical site
- Problems fighting infection
- Lymphedema or swelling of arms or legs (when a Lymphadenectomy has be performed)
- Nutritional problems (especially in gastrointestinal procedures)
- Cognitive problems such as trouble focusing or memory loss
- Changes in sexual function or fertility (ovarian, endometrial, rectal cancer)
- Pain that may be chronic or long term
- Difficulty with speech or swallowing (tongue, laryngeal and pharyngeal cancer)
As for chemotherapy, some of the top selling drugs worldwide, as well as many of those that are still used, bring serious long-term consequences for vital organs, even causing them to eventually fail. Trastuzomab, Doxorubicin, Cyclophosphamide and Bevacizumab require accurate cardiac monitoring before, during and after treatment. They are cardiotoxic drugs that can cause chronic problems such as congestive heart failure, coronary artery disease, arrhythmia and hypertension.
It must be remembered that chemotherapy is a treatment that does not discriminate between benign and malignant cells. Therefore, it attacks both sick cells that replicate rapidly and those that are part of our normal organism such as hair. While hair loss is reversible, many other side effects and symptoms are not. Problems such as early menopause, weakness, cramping and decalcification are some of the ones that the oncology survivor must fight throughout their lifetime.
Radiotherapy may be the ONE treatment which oncologists trust to eliminate disease from the body. This is because it is generally used as the last step in the cancer treatment process because it is highly effective. The first organ which we think to protect when using radiotherapy is the skin. But radiation therapy is a comprehensive treatment that we must evaluate cautiously. It is true that the side effects of radiotherapy treatments have been limited due to important advances in the manufacture of radiation oncology equipment. Even now, intraoperative radiotherapy (IORT) can be offered to avoid submitting the patient to long and intense sessions of radiant treatment. As with some other therapies the side effects of radiation therapy can become chronic and plague the patient until the end of their life. The effects of radiation therapy can be seen at the level of the eyes, lungs, thyroid and blood.
Future of cancer late effects: Farewell?
It is important to have this information. The drugs that are among the most used in cancer patients, the ones that save lives, are also carriers of chronic side effects. It is important to provide patients with complete information on long-term side effects. Patients should be able to engage in a serious conversation with the doctor. They should feel empowered to ask not only about the effects of the medications during the treatment, but also after the end of the treatment. This kind of material may not be available from every provider. But it is urgent that all patients have access.
In 2019, we now can study a patient’s personal genome. We can identify in advance of treatments if a patient needs chemotherapy or not. Today, chemo is the therapy that causes the greatest number of late effects. Even though this type of exam could cut the cost of unnecessary chemotherapy by $160 million per year, genomic testing is not available in all health centers or for all types of patients.
Patient voices are getting louder and more clear. Who is listening?
The FDA has included the patient perspective in FDA Advisory Committee meetings since 1991. However, it took until 2001 to add the Patient Representative Program. This has since been expanded to allow patients to serve as consultants during the review cycle.
We know it is not enough to include a couple patients’ feedback in review process.
The important questions for me is this: why do our regulatory authorities (such as FDA) not require cancer drug manufacturers to collect patient reported outcomes? And these should include quality of life measures during and aftertreatment completion. These should include an evidence-based image of the patient quality of life if they undergo a treatment! Why do our cancer centers not pay closer attention to this?
The good news is patient voices are getting louder and more clear as patients unite for better care. More than 1,200 patient advocacy groups have sprung up since Paula Carroll founded the first one in 1981. It is a matter to consider and take into account when we speak, not only of economic savings for the state and for the patient, but also, what is even more important, to guarantee the oncologic patient a true state of survival after cancer with a quality of adequate life for the following years.
As patients we need to know “What would my quality of life be after the treatment? Please don’t just give me the list of potential symptoms with no statistics associated with it.”
PerSoN Clinic Team