Paul's Heart

Long Term Survivor Follow Up Appointments – Part 1, The Loss Of My Advocates

This post was to have been written two days ago, to piggyback on my last post, “Five Year, Follow Ups, For Life.” This is my second of two weeks through the year, that I have follow ups for all of the late side effects that I deal with as a result from my treatments 37 years ago for Hodgkin’s Lymphoma. I wanted to give a day by day reporting to show what this practice of long term survivorship care looks like. However, I hit a mental snag at one of my appointments on the first day, and it knocked my focus off enough.

John Lennon once said, “life is what happens when you are busy making plans,” and admittedly, I was already having difficulty with my focus before that appointment, as I have a close family member ill, and because I had already had these appointments scheduled more than six months ago, I needed to be in both places at once, and cannot. And like I have mentioned before about the airplane analogy, “if the cabin loses pressure, an oxygen mask will drop from the ceiling, and put your mask on first before helping anyone else.” This is one of those situations, if I don’t take care of myself, I am no good to my family member.

I see a number of specialists during these weeks, all coordinated well in advance to see as many as I can fit in, and to get as many of any studies they need to get done. When I first started this strategy, it was a couple years after I realized that I was no longer just a cancer survivor. I was a cancer survivor with late side effects. And between the doctor I found who understood this need, and my primary care doctor of nearly forty years, this process went flawlessly, seeing who I needed to, having testing that I needed, and any surgeries or corrections that had to be done, completed.

And then, as is their well-earned right (I would never begrudge them), they retired. But I felt confident that I had learned enough to be able to navigate with all the new medical specialist and doctors I would bring on to my team. I had learned so much what needed to be done to help my survival.

Turned out, I was wrong. Without those two advocates of mine, I am lost. I now find myself making brash decisions, not necessarily in my best interests, but worse, struggling with the foundation of my care, trust. I won’t get into the full issue because it is not what this post is about, and therefore will have its own post, but whereas I usually have my issues with health care, normally steered at insurance and corporations, I felt that morning, an absence of the backbone of medical care, medicine itself. So, yeah, I will get into that on another post.

So, my week has gone as it was on paper with my appointments. The very first thing that happens with me, I have bloodwork done, with a multitude of tests. I am a difficult stick as my veins were destroyed by my chemo, as ports were not available back when I did my chemo. Normally, this is the most stressful thing for me, yet this particular lab has the best, and most pain free success with me.

From there, it was off to have a chest CT scan done, to follow up lung nodules I have, one suspected of being cancer. There is always concern about me being exposed to more radiation on top of the lethal amount I had for my Hodgkin’s treatment, but as this is following a situation that needs to be followed, and possibly dealt with, the risk is worth it.

From there, it is my first discipline I see, pulmonology. With the scan done, it is reviewed immediately, compared with prior scans for growth or development, and the decision is made what to do next, or if we are on to the next level of care, a biopsy. But for now, this scan has revealed little growth, or enough to warrant doing a biopsy at this time, which carries risks I do not need right now. See you next time.

My next appointment was with what I consider the most important of my survivorship care, as it always gets the most attention, cardiology, my heart. Of course today, I arrived with a new symptom, the same symptom that took me to the ER two weeks ago, a swollen right arm and hand.

When I arrived, the swelling was just as bad if not more than two weeks earlier. Now, to be transparent, though I disagree with why, today’s appointment was only to be with a nurse, not my doctor, per rules from corporate or insurance, I don’t know. But today, and I want to be clear, I respect all of my nurses, but I needed to see my doctor today. This was an emergency.

Regardless of my concern, I gave the nurse the benefit, that surely he would bring my doctor in to look at my hand and arm. Instead, he told me of the CT scan that had been ordered (I knew this already), reviewed my prescriptions, did some vitals, and that was it. I said to him, “is there any chance the doctor can just come in and at least just take a peak at my arm and hand in person” so she can see what I am dealing with?” The answer was “no.”

And then my stomach sank. This had never happened to me before. My other doctors would never let this happen. I have been at this survivorship stuff for sixteen years now, but yes, that was with my advocates quarterbacking everything. And I thought I knew enough, and had the confidence that I could continue my care the only way I had known. I was wrong. I was crushed. I left the office feeling my survivorship care was now ending, no longer allowed to see my doctor, especially when I needed them most. I was definitely shaken.

I felt I had only one hope, which would be the next morning. Since I could not get cardiology to be concerned, I was seeing vascular, responsible for my carotid arteries, impacted also by the radiation therapy. I had a stent placed seven years ago.

As soon as that ultrasound was done, I was seen in the exam room. First, the scan showed the carotids were still doing well. And then the attention turned to my hand and arm. He knew I still had a CT to be done that was ordered by him that would show anything vascular as a potential cause. But he offered me another possibility, and something quite common among Hodgkin’s survivors and breast cancer survivors, lymphedema or lymphadenopathy, swollen lymph nodes, something I definitely did not want to hear any more than a blocked vein or artery or a blood clot. If it turned out to be lymph related, he would arrange for me to add yet another specialist in my long term care.

I was originally scheduled to have two CT scans, which would have meant being exposed to double the radiation. A last minute decision, and availability of a special machine, allowed the scans to be combined. That news brough other good news, in that contrast would be used, it meant only trying to get an IV into me only one time. The scan was completed in about ten minutes. And then the results were available later, and were shared by my doctor.

The good news, the CT showed nothing vascular or blood clots. But it does show some lymph concerns as he thought a possibility. In particular, there are two swollen lymph nodes. You would think someone who was 37 years out, the last thing I would think about is my Hodgkin’s being back, but this would not be considered a relapse if it was, this would be considered a new diagnosis.

I am trying not to get too far ahead. I have an appointment later this afternoon, as well as two other appointments to in fact discuss this direction. But I cannot overlook the fact, that the symptom with my arm and hand, is identical to when I was diagnosed with Hodgkin’s back in 1988, with the left arm and hand.

I am in a critical spot of thought right now, and I want to make the right decisions. Which clearly means I need to have my quarterback to make sure I don’t make any foolish decisions. All the while I am dealing with my ailing family member at the same time.

This was my harder post to do, so, I am hoping to wrap up this week of follow ups with just a second post. And then it is on to figuring what is up with my arm.

Five Years, Follow Ups, For Life

It is that time of year again for me, twice a year, every six months, follow ups with doctors as a cancer survivor. Many get confused when they hear that I see doctors for this reason, when it has been over 36 years that I have been in remission. And honestly, once I hit my five-year mark, and my oncologist declared I no longer needed to be seen, no surprise, I was more than willing and happy to move on with my life. And for eighteen years, it worked, and then it didn’t. You can dig in to “Paul’s Heart” for the many reasons why this was a mistake to move on after oncology. I want to start at the beginning.

Why primary care remains essential after oncology follow-up ends?

Being released from an oncologist after five years of remission is an important milestone, but it does NOT mean that medical follow-up is no longer necessary. It usually means that the risk of recurrence of the cancer has fallen enough that routine care can be transferred to your primary care provider, sometimes working with a cancer survivorship clinic or the oncology team if or when needed. It is frustrating to me that after all these years, oncologists still do not either mention or emphasize that cancer survivorship is lifelong, and most survivors should have continuing follow-ups for their general health, and “possible” recurrence (not definite or likely), new cancers, and any possible delayed side effects from treatments.

While I and many cancer survivors may mark their calendars with the date, the significance of five years being a milestone is not just as an expiration date, but varies considerably according to the type and stage of the cancer a patient goes through. Some cancers rarely recur after that point while others can return many years later. More importantly, chemotherapy, radiation therapy, and surgery may cause health problems that do not appear until years or even decades after treatment. These are what you have often heard me refer to as “late side effects”.

It is your oncologist’s responsibility to make sure that your primary care provider (PCP) know the exact cancer diagnosis and stage you had, the chemo drugs received including cumulative doses when available, locations and doses of radiation, surgeries performed and any organs removed, and this is important, any known or possible treatment complications, and the recommended schedule for future follow-ups, tests and screenings, including baseline measurements for future comparisons.

This information should be written up as a treatment summary and survivorship care plan. This not only tells your PCP what needs to be done, but any future clinicians that you come across in your care, the follow-up care needed, what late effects may occur and what warning signs require attention.

So what does your PCP oversee after the five year mark?

Your PCP becomes the main contact, the main coordinator, the facilitator of your care for the rest of your life. Though unlikely after five years, your PCP will monitor for any recurrence. The PCP needs to know what symptoms, physical exams, and lab studies or imaging tests are appropriate for the original cancer. Routine testsing should be based on the particular diagnosis rather than performed indiscriminately.

Your PCP should screen for additional cancers as some previous treatments can increase the risk of a second or secondary cancer. Screenings may need to begin earlier than others patients (such as for colon cancer or breast cancer), occur more frequently or include tests that are not normally recommended for someone of the same age without your treatment history.

And as I found out eighteen years after my remission date, the PCP should look for treatment-related late side effects. Depending on the treatment received, these can involved the heart, blood vessels, lungs, thyroid, bones, kidney, nerves, reproductive system, digestive tract, immune system, cognition, or other organs. As I have said before, these things can pop up as early as months, or as late as years or even decades later.

Of course, your PCP will also still manage your ordinary health conditions. You still should have regular physicals to monitor blood pressure, cholesterol, diabetes, vaccinations, infections, weight, bone health and other age-appropriate screenings. This is important because some cancer treatments can raise the risks for cardiovascular, metabolic or bones.

Always put on the back burner or forgotten, is the care the PCP provides for emotional or mental health. The mental trauma from cancer lasts a lifetime. Whether it be fear of recurrence, anxiety, depression, fatigue, changes in identity and “scanxiety” continue long after treatment ends. It is important to understand, this is not the same or to be confused with “moving on.” Your follow up care has nothing to do with “moving on.”

Look at it this way, leaving your oncologist should be viewed as a transition, not a discharge or dismissal from health surveillence. Yes, celebrate hitting the five-year mark! That is a big deal. But the goal now changes from concentrating on eliminating cancer to protecting your long-term health and quality of life. A cancer survivor should never be treated as though their cancer history became irrelevant after the five year mark. That history remains as important a part of the person’s medical identity, and will inform and support your care for the rest of your life