Snakes and Ladders - How Cancer Broke All My Pencils

Posted by Scot Tobin on September 29th, 2017

Relapse and recurrence, the most dreaded events after surviving a cancer diagnosis.  The thought of this happening floats in the background of my awareness, always ready to shoot to the 
surface and scare me to death. 

My first scare was in the fall of 2015.  I started having drenching night sweats again, a symptom of lymphoma.  The subsequent CT scan in January 2016 showed nothing. 

In March 2016, I had sharp and piercing bone pain in my right pelvis, so severe I couldn’t move.  I was sure the breast cancer had moved to my bones.  I was wrong.  The bone scan in April showed nothing.  Suddenly, I was in a game of Snakes and Ladders.  One minute I was sliding down a snake of fear and the next minute I was climbing up a ladder of hope.

One of the problems with having a lymphoma diagnosis is that lymphoma is a disease of the immune system.  This means that it is more likely to get more than one cancer if you already 
have lymphoma. I needed to check my colon for colon cancer, but I couldn’t go under an anesthetic because I was still in the grip of the relentless side effects.  I was lucky that there 
was a new diagnostic method that didn’t require sedation.  It was a CT scan of the colon, and so I went for it.


July 22:  CT scan of colon for general screening purposes


July 26:  Appointment with my family doctor who tells me that my colon is clear and healthy, but the scan found multiple lesions throughout my spine.  She orders a bone scan to see if 
the cancer has now metastasized to my bones.
 I was in shock.  I didn’t expect to hear that there was cancer in my spine.  I thought about the severe bone pain that I had experienced in March and wondered if that had anything to do 
with these lesions.


August 2:  Bone scan to determine if there is cancer activity on my bones


August 4:  Appointment with my family doctor who tells me that the bone scan shows no cancer cell activity, but the radiologist believes that something is going on in my pancreas.  My 
family doctor thinks I should have a bone marrow biopsy. She refers me to my lymphoma oncologist who will do the procedure.


August 11:  Appointment with my family doctor.  I tell her that I have not heard anything from my lymphoma oncologist about the bone biopsy.  My family doctor calls to find out what is 
happening and then tells me what she has learned.  I have now been referred to my breast cancer oncologist, with a recommendation to put me on hormone therapy.


I was so scared.  I was also confused.  I felt like I was being bounced back and forth between the two oncologists.


August 18:  Appointment with my breast cancer oncologist.  She tells me that the lesions are not breast cancer, so they must be lymphoma.  She orders a chest X-ray and an abdominal 
ultrasound to find out if the cancer has spread elsewhere, and an MRI to find out what is going on in the lesions themselves.  She also sets up an appointment with my lymphoma 
oncologist for a bone marrow biopsy.


August 19:  Chest X-ray and abdominal ultrasound to determine whether or not the cancer has spread elsewhere.


August 22:  Appointment with my lymphoma oncologist to do the bone marrow biopsy and check for pancreatic cancer.  He tells me that the X-ray and ultrasound are showing lesions.  He also tells me that he thinks that the lesions 
are not due to the lymphoma, since I have no other lymphoma symptoms such as drenching night sweats, loss of weight, and pain.  I tell him that I have had drenching night sweats off and 
on and that I did have pain in March.  He doesn’t want to do the bone marrow biopsy because it is a very painful procedure, and he’s sure it won’t tell him anything.  He agrees to do 
the MRI and recommend an alternative treatment for pancreatic cancer.


I felt so alone, neither oncologist knew what they were dealing with.  I could sense confusion and the fact that I was being bounced back and forth confirmed it.  They didn’t know what 
was going on.  My lymphoma oncologist didn’t even believe it was cancer on my spine.


August 29:  MRI of my spine to determine what is going on in the multiple lesions.


September 8:  Phone call from my lymphoma oncologist.  He tells me that there is cancer in the lesions, and even though he believes they are from the breast cancer, he will work on the 
next step to determine which cancer is in my spine.  He tells me not to worry, that it’s not an emergency.


October 6:  Phone call from my lymphoma oncologist.  He tells me that there is a clinical trial for a special form of a PET scan that uses an estrogen tracer.  Since my form of breast cancer is estrogen positive, the tracer should be picked up by the cancer cells in the lesions, if they are breast cancer cells.  He sounds hopeful.


Finally, there would be some answers.  I felt relief, and so much better because there was a scan that could confirm which cancer was in my spine.


October 11:  Phone call from my lymphoma oncologist.  He tells me that my case has been declined for the PET scan clinical trial. I have the wrong form of breast cancer for the trial.  
He tells me he can’t do anything else for me, and refers me back to my breast cancer oncologist.


October 19:  Phone call from the Cancer Clinic telling me that my appointment with my breast cancer oncologist will be on November 3. I just wanted to scream.  It had already been three months since the CT scan had found the lesions.  It had been confirmed as cancer in my spine, and I was still being bounced around.


October 20:  Phone call from the Cancer Clinic telling me that my appointment with my breast cancer oncologist will now be on October 24.


When I got off the phone, I cried and cried and cried.  What else could I do?  I was stuck in a diagnostic shuffle.  I was also in pain now, and not sure if it was in my head or from 
the lesions.


October 24:  Appointment with my breast cancer oncologist.  She tells me that she still thinks that the lesions are lymphoma, but agrees to put me on a hormone blocker for three months 
to test whether or not the medication will affect the size of the lesions.  If the lesions get smaller or disappear, then they’re breast cancer. 

If they stay the same size or grow, then they’re lymphoma.  She prescribes letrozole, and agrees that I can start with a quarter of a pill to minimize side effects.  She also orders a bone scan and an MRI to find out whether or not there have been any changes since the last MRI two months ago.


October 26:  Bone scan to determine activity level of the cancer cells.


October 31:  Phone call from my breast cancer oncologist telling me the bone scan is clear.  She explains that the bone scan can’t see cancer that is in the bone marrow, which is likely where my cancer is manifesting itself.


November 3:  MRI to determine status of multiple lesions in my spine.


November 21:  My next appointment with the breast cancer oncologist.  Perhaps I will finally find out what is going on.  The breast cancer oncologist tells me that the lesions have not 
changed.  I ask to be taken off the letrozole, because I have so many side effects.  She agrees and says I will have a CT scan in January to see how the lesions are doing.  I am now in 
“wait and see”.


In January 2017, the CT scan shows no change to the size of the lesions.  My breast cancer oncologist couldn’t explain what was going on.  She scheduled another CT scan for July 2017.  


In April 2017, I couldn’t handle the pain in my lower back, so I am put on very strong meds.  Maybe it’s the meds, maybe not.  But I’m sure that someone has just stolen all of the ladders. 

All I can see in front of me are snakes, snakes and more snakes.