The Irish Medical Times - What happens to you when you get the "good" type of cancer?
I had never met another Hodgkins patient but I was aware many had developed heart issues from the cancer treatment. I just assumed they would all have the same issues as me - dilated cardiomyopathy from the chemo, mitral valve regurgitation from the radiation, resulting in heart failure, open heart surgery and a defibrillator implantation .
However, after conversing with a softly spoken lady from Florida, I realized the survivors I had spoken to so far had all undergone CABG (Coronary Artery Bypass Grafting), due to the radiation hardening their arteries, I had no idea this could happen. From chatting to more people I learned the most common valve the Hodgkins patients had repaired/replaced was the aortic valve, due to stenosis from the radiation (the aortic valve is usually the closest valve to the radiation field).
These conversations were eye openers for me, my aortic valve and arteries were in good nick, I wasn’t aware that they could become a problem. I hadn’t fully understood how comprehensive my cardiac risk was. I was glad my heart was being monitored closely.
Tess Nowell (a retired GP and HL survivor from the UK) and Erin Cummings (Hodgkins Intl co-founder and HL survivor) welcomed everyone. They gave a shout out to a medical student in attendance. He hoped to specialize in oncology and wanted to hear about patients at a patient-led event, so he drove 7 hours to Boston. It was a hopeful sign for the future of medicine and survivors.
They introduced Dr Emily Tonorezos from the National Cancer Institute. Hodgkins is a rare disease, therefore there is not an abundance of studies looking at the long term effects and needs of HL survivors. However, the National Institute of Health is conducting some studies for HL survivors including looking at the effect of low dose Tamoxifen to reduce breast cancer risk.
It felt like most of the patients in the room had developed a second cancer as a result of the treatment. The most common one being breast cancer. This was largely due to the wide field radiation blast we would have received. Radiation therapy is still the most effective way to treat Hodgkins, although it is thankfully now targeted. Doxorubicin (aka the red devil) is an infamous drug used to treat Hodgkins, it is most closely linked with inflicting heart damage but I learned at the conference that it can also increase the risk of breast cancer.
Therefore it might not be surprising, although somewhat shocking, to find out the risk of breast cancer for a HL survivor is comparable to a BRCA gene carrier.
As we chatted during a break about everything from infertility to dental damage, an interesting woman told the gathered group about her breast cancer leading to a double mastectomy. There were a number of stories from women on the day who had opted for prophylactic breast removals.
Other common second cancers as a result of HL treatment included thyroid, lung and skin cancer. I heard one of the doctors mention mouth cancer (my second cancer) but I couldn’t find another person in the room that had actually developed it. I had also experienced a pre-cancerous tumour in my pancreas requiring a partial pancreatectomy and splenectomy but this seemed to be unconnected to my HL treatment (I will have to find another conference for that).
On the topic of new ways to treat HL there was talk of check-point inhibitors and immunotherapy. I am glad we are moving away from the barbaric treatment of old. Dr Tonorezos made the progressive point that battling the disease into the future will require help and research from the survivors that have experienced it.
Having heard from a medic, it was time for Erin to stand back up and share her survivor's story. She started by asking the crowd
“How many of you were told Hodgkins is a good cancer?”
Everybody's hand went up and a shiver went down my spine. I can remember being told that the day I was diagnosed. Erin was a teenager in high school when she fell ill, people would tell her she got her cancer out of the way when she was younger. Words I have also been told - I’ve even said them myself! She made the strong and salient point that no cancer is good and no time in your life is convenient for cancer.
Erin concluded with a very powerful message - when she was young with cancer she wanted to meet an adult that had survived, so they could tell her she would be ok. As she grew up she realized she had become that person.
“Share your story” was her overriding message.
I currently attend 11 doctors for all my late-effects. I am sure people think I am being overly cautious, so I felt vindicated when Dr Larissa Nekhlyudov (an expert in cancer survivorship) showed a slide with a list of 60 medical professions that a HL survivor can require to manage late-effects (including my 11).
She brought up the elephant in the room, the psychosocial help that is needed (but sadly lacking). HL survivors care needs to be more holistic - if you are a doctor, in particular a GP reading this, please do try to educate yourself on late-effects, even a basic understanding of the risks these patients face.
Dr Nekhlyudov ended with a video from one of her HL survivor patients who has since passed on. She choked up as she introduced the video and it laid bare to me how visceral the connection can be between doctor and patient, especially when you’re in it for the long haul. She said HL late effects patients always ask her “Have you ever seen anyone like me?”. It’s such a rare cancer, we feel like unicorns, that is why patient organisations like Hodgkins International are so important to bring us all together so we know we are not alone.
Doctors and survivors took to the stage, not for an impromptu sing-song as I secretly hoped, but a panel discussion. A man spoke of his 50 years of survival, most of which were trouble free, but then his heart issues began. He had deep grief over what he could no longer do physically. With the help of a palliative care nurse he is concentrating on what he can do, not what he can’t. When he finished with, “I am tired, I want to come home” he was moved to tears (along with everyone in the room).
The panel agreed that most HL survivors have to make up their own care plan but the survivorship care plan should start at day one, not twenty years later. A big hurdle lies in alerting the HL survivors who don't know they are at risk.
This year the NHS in the UK sent letters out to 1,500 women who had received chest radiation for Hodgkin's Lymphoma putting them at higher risk for breast cancer, the women were offered annual screening mammograms. The NHS also apologized for overlooking them.
Why aren’t other countries following suit? Why didn’t Ireland’s HSE send out letters? Well done to the NHS but we need to see more of this type of reparations for damages inflicted and more countries following suit. It’s never too late to offer someone care. In fact the panel concluded that countries that register cancers and chronic disease are ahead in terms of tracking cancer and survivors going forward.
Over lunch we exchanged more war stories. I loved that people bandied around medical lingo like ‘mediastinal mass’ and everyone nodded along knowingly. My favourite line from lunch was “I don’t feel like a unicorn anymore”.
I was noticing trends in people’s problems and making mental notes to get things checked myself. A few people were having recurring colon polyps which seemed related to their prior HL treatment (not your usual lunchtime conversation).
Since stumbling across Hodgkins International on the internet and subsequently their patient support group I have seen two doctors' names mentioned over and over - Dr Kevn Oeffinger and Dr Michael Stubblefield.
The room fell silent when Dr Oeffinger took to the podium. One of the first patients he spoke about had echoes of my own story. She was a young woman that had developed heart failure from her Hodgkin's treatment. She died from heart failure aged 47. I am 47 years old and 5 years into my own heart failure journey. I hope to live a longer life as new medications and advances are made every day, but her story struck a chilling note in me.
There was no denying the fact that those of us who were treated for Hodgkin's prior to 2005 (before protocols softened) were left with a multitude of serious health problems arising from the treatment. But the doctor had hope, he asked a patient in the room who had recently had a heart transplant to stand up, she looked delighted in herself and got a standing ovation. He said patients often say to him “I look good on the outside, but I feel broken on the inside”. You have a choice in which direction you go with your emotions. His talk brought everyone’s emotions to tears, including his own.
Dr Stubblefield was the last speaker of the day, he is known for his cancer rehab programme. He talked about the radiation, how it can turn your lungs to jello, creating radiation fibrosis damage that is irreversible. The common impairments he sees most often in HL patients are spinal cord damage, nerve damage, muscle weakness, dropped heads, neck pain and gait issues. He actually noted that a lot of us in the room were propping our heads up. I have noticed in recent years my neck gets sore and tired. I am naturally moving myself towards yoga and pilates which I think will help.
Dr S surmised that the traditional approach to cancer was to just treat the medical side of it, but in reality rehabilitation from cancer takes a village.
I felt very lucky to be surrounded by my village tribe that day. Sometimes just knowing you’re not alone lessens your load.
www.hodgkinsinternational.com
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