What Do We Do Next?

Watch and Wait...

Today while on my way back from walking dogs and leaving myself a voice memo with all the thoughts awakened by the walk, I had three questions:

1. How many people refuse “regular” cancer treatment like radiation, chemotherapy or surgery?

2. What are the main motivations for doing so?

3. How does refusing treatment impact quality of life and its duration?

Not questions I can answer based on my own knowledge and experience, nor a quick Google. I am taking time to research and come up with at least some preliminary answers, and questions for further exploration.

In the meantime I will start by answering my own question (number 2) from my personal perspective.

FIRST DIAGNOSIS AND TESTS

In 2011 when diagnosed with cancer I was first seen at the AMC, the Amsterdam Medical Centre. I headed there with a group of women, including my mother, my aunt and three friends. After doing my rounds for blood tests, X-rays, sonograms and scans we left the hospital.

Walking through the lobby I said out loud: “I need to get out of here. If I am treated here, I will die.”

A tad dramatic I know.

God knows why I said it, but they heard me. Or at least my aunt did, because the first thing she did when arriving home in Utrecht was knock on her neighbour’s door. He happened to be the head of the Dutch cancer institute. If anyone knew where to go for a second opinion, it was him. My aunt briefly explained the situation: I have a 33 year old niece with adeno carcinoma of the uterus and she needs to see a specialist. Without hesitation he said: ”Professor Verheijen at the UMC Utrecht.” He could not have known this advice would end up saving my life. I did send him a thank you note once the unique and absurd scenario of my cancer circus had unfolded.

Had I gone to see any of the other 4 fertility saving specialists in the field of gynaecological oncology, their protocols would have killed me. Why?

DIFFERENT PROTOCOLS: GUT FEELING OR DUMB LUCK?

I have shared this crucial, pivotal point before, but I still get questions about this. That has taught me I have to break this down and possibly tell it in a different order.

The regular protocol of fertility saving treatment of adeno carcinoma in the uterus depends on a few conditions: the size and location of the tumour, and whether or not the cancer it has metastasised. Infiltration of the surrounding lymph nodes don’t show up on scans until they have reached a detectable size. Lymph node removal is therefore always part of the surgical interventions. That way a pathologist can check for cancer cells, even if they don’t qualify as a tumour yet.

Ideally a severe regime of chemotherapy (where all your hair falls out - there is not cold capping your way around that) reduces the tumour size considerably. It can then be surgically removed and the natural opening of the uterus is replaced with an artificial cap, which in theory is strong enough to help keep a baby inside and safe for the required nine months. I had no desire to have a child at the time, neither was I sure I ever would have. I did however wanted to stay “whole”, and at the time to me, that included keeping my uterus.

That is what I wanted. But it is not what I got.

Professor Verheijen was the only one out of four fertility specialists who did lymph node removal surgery first, then determine a plan of action. All the others administered chemo first, and then decided how to proceed during an operation, with a pathologist standing by to check for metastases. Professor Verheijen did not like the idea of a woman going into surgery more or less blindly, not knowing if she would wake up with her uterus intact, or a radical hysterectomy.

Nobody could have known that the additional second cancer, a rare sarcoma subtype called PEComa, had wandered around my lymphatic system quite enthusiastically. It had not shown up on any of the scans. It also has no known tumour marker, making it impossible to detect though blood tests.

As PEComa is a chemo and radiation resistant and quite a tenacious little bugger, chemo would have killed me. The adeno carcinoma would have possibly been reduced to an operable size. But my compromised immune system would have made it impossible for my body to contain the PEComa. It would have “exploded”.

WHEN RARE CASES DON’T MEET PROTOCOL

The oncologist I met that day at the AMC in Amsterdam would have applied a standard non fertility saving treatment plan. I would be dead. The other 3 fertility saving specialists who were available for a second opinion would have applied their standard fertility saving treatment plan. I would be dead. None of them would have been to blame for that. They would genuinely be doing what they thought would be my best bet, based on the statistics of all the cancer patients before me, who presented with adenoma carcinoma of the uterus.

But I was not a standard case. In fact, what happened with me was so rare that there are no statistics at all that apply. The doctors did not know that. How could they. I didn’t know that. How could I?

But my gut feeling of not wanting to be treated at the UMC and voicing this feeling led to a series of events that brought me to the only person in the Netherlands who could give me any chance of survival.

HOW I HEALED

Luck, chance, intuition or fate. Who cares. I lived. The personal healing habits I developed post surgery must have helped too, as I went from lymph nodes the size of a golf ball to lymph nodes within normal margins in the space of four years. But I don’t take credit for my survival. It was the ultimate team effort.

The morning of my surgery I reached a low point and refused surgery. What was the point of going through with it, if I was going to die anyway? PEComa doesn’t paint a pretty picture and my chances were slim to none. The nurse reasoned with me in a very calm and logical way, after first acknowledging my feelings and my right to decide.

She then said three things: 1) If you don’t do the surgery you will be dead within a year for sure. If you do have the surgery you may live longer. 2) Professor Verheijen did not become a doctor to let people die. If there is anyone who can give you a chance it is him. 3) If you can’t do it for yourself, can you do it for the people who love and need you. I could have argued back on all 3, but I didn’t. Instead I went ahead with the surgery.

The more I have discovered since, the more I have learned about the body’s own ability to heal, our own human ability to put a tender touch on our old wounds and heal emotionally and spiritually, the more I have questioned my decision from that morning. Would I have made it this long without surgery? I have a very split position in this. Yes I believe my body can do magical things. No, I am not a 100% I am strong enough or steadfast in my believe to really pull that off

SPONTANEOUS REMISSION OR FALSE HOPE?

I am facing cancer again now. At least we “assume” that is what showed up on the CT-scans and MRI, as the pathology results of the biopsy and the PET scan had no answers. It may mean I was never truly cancer free. It could mean what is there now, isn’t cancer. We don’t know.

Professor Verheijen has retired, but I am in the most capable hands of his sidekick now chef Dr. Zweemer.

“I don’t treat the disease, I treat the person” is his motto and I am grateful for that.

I am also weirdly grateful (despite also still being dizzy from this headfuck that was the last two months of 2024) that we are adopting a “watch and wait” approach. I do not intent to spend my life in to waiting room of the oncology department or chopping up my life in 3-month increments. I will find a way to wrap my head around that.

But in this moment I am relieved I don’t have to make any decisions regarding treatment. Which in my case would involve a very risky operation or a gruelling regime of immune suppressing drugs with limited and temporary efficacy.

Where does that leave me now? A possible recurrence, a series of inexplicable and inconclusive test results and no immediate treatment plan. On the upside: my body will not be burdened more by chemical or surgical interventions. On the downside: will what is within my own reach, on the natural/alternative/complementary route, be enough to “live long and prosper”. How long will I be able to stretch it this time around? I trust my gut, I trust my body, I trust myself. Will that be enough to rise above the uncertainty? Live with the not knowing. Will it be enough to heal?

DECISION TIME

In a way I am off the hook. I don’t have to justify or defend my choices yet. With a bit of “luck” I may never even have to. Opting out of regular treatment raises a few eyebrows, ignites a few heated discussions. Will I have the courage to stand by my convictions?

That is why I understand when Elle McPherson faced breast cancer seven years ago she kept schtum about it in the media. She only included those closest to her in the process. She did not order some random plant based stuff online to experiment with. She spent eight months figuring it out under the supervision of a team of doctors from various fields, both traditional and “alternative”. When she finally opened up about it in September 2024 people were shocked to hear that she had refused the oncologist full treatment plan. “She is nuts.”

I don’t think her remission is a lucky fluke. Like I don’t think me being alive today in the face of a life expectancy of 18-23 months was. But where does the balance lie?

Where is wisdom in this? Which brings me back to the three questions I started this ramble with.

Right now I am on board with Dr. Zweemer’s approach. Not that I am adopting “a watch and wait” approach myself. I am doing everything I can to lower my stress levels, boost my immune system, and as my therapist friend Zsolt says: show up for all the things that make you feel alive. Or as today’s Itjing told me:

“Given perseverance on your part, this reading indicates success. In spite of challenges, cling to what is luminous in yourself, in others, and in life itself, never forgetting your positive attachment to the highest good. When events seem foreboding, or people seem oppressive, remember the good that has been and is yet to be. Holding to this idea is to cling to the power of light, the only force that can illuminate darkness.”

-Divination Foundation

Maybe a time will come where things change and I do have to make different decisions. A time when possibly a third or fourth opinion will be desirable to understand my options.

Why would I refuse regular cancer treatment? As far as I understand it now, if the irregularities were to develop compromising my kidneys, I would have two options:

1. One would be high risk surgery. It wouldn’t cure me but it would mean more time. By removing part of the irregularities my kidneys could keep functioning. Snag: In 2011 after my surgeries I promised my body that whatever happens I will never have surgery again. Did I make a promise I won’t be able to keep?

2. Two: immune suppressant drugs like Everolimus or Sirolimus. Snag: horrible side effects, limited efficacy, temporary efficacy. It is not a cure.

Professor Verheijen was criticised in 2011 for not treating me with this drug. He only told me this years later, when I was in his office to say goodbye. We then believed I was in a spontaneous remission. The last scan showed everything within normal margins. I needed to not be a cancer patient anymore. I needed to live my life.

The damage was done in terms of lymphedema, chronic nerve pain, brain fog and fatigue. But I managed to develop a lifestyle that honours my body. That made it possible for me to really enjoy things again. For the past decade I have had great quality of life. I am grateful I never took the drugs. I am grateful I was never put in the position to consider them.

After my surgeries and during my time in hospital, despite the best care possible, I was in hell in terms of pain. I cannot describe the torture I have felt. Longevity is not the goal. And I genuinely question how much more pain I would be willing to take.

This post is the first of a series of explorations. I have posted my 3 questions on Substack notes and on Inspire. If you know where else to share to reach more people to debate these with, feel free to share, leave a comment or send a message.

Grateful for sharing, thank you for reading!

XXL

PS No Sunday Brunch this week. Just this. I have “wasted” all my time getting lost down various rabbit holes -including BIMBO VS TRADWIFE and HOW TO TAKE A QUANTUM LEAP INTO ALICE IN WONDERLAND… TBC