Retinoblastoma Survivors’ Perspectives on Long-Term Follow up Care

Ffion from the UK writes:

“While being under the care of specialists for previous cancers is vital, having access to a multi-disciplinary care team with understanding of the long-term effects of cancer, both emotionally and physically, is also much needed.

This may very well mean only a yearly appointment, but having a team which have – following the read through of a five-foot pile of paperwork – a complete appreciation of your medical history, means access to a much swifter response to any future symptoms.

However, many RB survivors, including those who’ve had other cancers, continue their ongoing debate with their GPs about a referral, highlighting a lack of understanding of the risks connected with the RB1 gene.”

Recognition and prompt screening of a suspicious symptom is often the deciding factor in successful treatment.  Too many of us have lost loved ones because a symptom was trivialized or ignored until the underlying cancer was beyond treatment.  Many survivors actively advocate for our health care, mindful of the potential consequences of inaction.

Zaakirah from the USA writes:

“Because second cancers are a real thing, I have a few more doctors that I am required to see on a regular basis.

Even though I am older (in my mid-20s), I don’t need a prosthesis for my right eye as often; however, an ocularist is another required doctor.

As a woman, I have a reproductive endocrinologist due to being diagnosed with polycystic ovarian syndrome and hypothyroidism as a teenager.

As a result of the radiation, I have a mild hearing loss and wear hearing aids in both ears. That also requires an annual hearing test with an audiologist. Dental hygiene is important too.

I also attest to having a good nutritious diet full of legumes, fruits, and vegetables for continuing to be healthy outside of my biennial ophthalmology and ocular oncology appointment.

The Vanderbilt Survivorship Program here in Nashville, Tennessee is really good with helping me to receive follow up care for all the many doctors I require. I would advise researching survivorship cancer care programs in your area to see what they can do for you and your family.”

While the care provided by a survivorship program is valuable, regular visits are often stressful and can interfere with life. Yet survivors still choose coordinated survivorship programs over navigating their complex medical care alone.

Cheryl from Australia writes:

“In many ways, I am thankful we have not been through the regular scans and  appointments that I hear people in other parts of the world talk about, but the downside is that when there is a concern, there is no clear point of contact and no one entity helping to coordinate care. 

Since 2006 I have undergone annual breast screening and skin checks, but these came about as the result of being diagnosed with very early stage breast cancer and two superficial melanomas.  Thankfully my GP accepted the need for ongoing monitoring, but I did feel that the impetus for this had to come from me.

It is only in the last 18 months, and after several attempts that my daughter and I have been accepted into the Late-Effects clinic of a major Cancer Centre.  My hope is that this will become standard practice, and that some consistency of lifelong follow up will be developed.”

Being referred to a specialist who is uninformed about long-term retinoblastoma risks is exasperating.

Melissa from the USA writes:

“I think the most frustrating part of being a retinoblastoma survivor with second primary cancer risks is having to be the expert. When I first found out about the Rb second cancer risks, I asked my primary care doctor who I should talk to about keeping me safe. She referred me to an oncologist. It took weeks to get in and the oncologist was thrilled to see such a healthy patient. She had not read the papers about second cancer risks and sent me on my way after making me promise not to smoke. It was infuriating. 

Eventually, I had my genetics team create a plan for me. They called me when full body MRI became more technically and financially feasible and made a ‘Li-Fraumeni like protocol’ for me. I was so lucky to have a team that stayed in touch, updated me on the availability of screening, and took extra time to submit information to my insurance company to get the MRIs covered.

So while I’ve heard others get a full day survivors clinic, I now get a full-body MRI (with the unfortunate unavoidable false positives) and I get to talk to an oncologist with a genetics specialty specialty about the results once a year. It’s the best we have for now.”

Long-term risks are often dismissed by uninformed healthcare professionals.  While this may be resolved, a great deal of time and strong advocacy is usually required.

I have an unusual hormone balance that is most likely a result of the combination of chemo and dual-beam radiotherapy with which I was treated.  The doctor who oversees this aspect of my care is top notch in her field, but not always aware of the thin line I always walk where diagnostics could expose me to additional risk from radiation. 

A lengthy and pointless exchange of messages ensued followed by an appointment where I finally helped her understand why I am so careful with radiation exposure.  We reached an understanding, but the process was emotionally exhausting.  Her concerns were well founded, but she did not understand the rest of the story.