Scientific Guardian Angels Appear Vol. 3: Univ. Michigan Lung Biopsy
What do you do when two fully qualified major medical centers give you opposite medical advice? What do you do when the decision impacts your personal colorectal cancer (CRC) immunotherapy research and shot at a cure? Today, I want to provide a medical update related to my personalized immunotherapy research project but while doing that, also discuss a major issue which impacts many cancer patients, myself included, conflicting medical advice.
‘Ask your Doctor”, “Go to a major medical center for advice”, “Go to a major medical center for a second opinion”… these are the types of guidance given to patients.
These are good pieces of advice – I recommend them to fellow patients all the time – but there is one giant elephant in the cancer room’s corner which is not often openly discussed: what happens when two fully qualified medical teams give completely opposite medical advice? What happens when this occurs in the life and death world of Stage IV Cancer?
I know a fellow Stage IV patient who went for treatment plan advice to three top cancer centers and she received three different suggested treatment plans which were all opposite and mutually exclusive from each other! With life & death and major quality of life impacts, as a non-MD, it was up to her to choose which medical plan to follow!
Talk about pressure – as if having Stage IV cancer wasn’t high pressure enough…
It’s Not About the Bike
My first exposure to this situation was in Lance Armstrong’s book “It’s Not About the Bike: My Journey Back to Life”. Unfortunate personal decisions and events from his personal life aside, Lance’s response to his testicular cancer diagnosis is extremely inspirational to fellow cancer patients. Lance had the ability to fly to any cancer center he wanted to for medical advice and treatment. Like anyone in his situation, he did this. Interestingly, Lance got completely different treatment advice from more than one top cancer center. Since he had the ability to fly anywhere for his treatment, it was up to him to make the final treatment decision.
Wait. Lance isn’t an oncologist, he isn’t even a MD. How the heck did he make an informed medical decision to choose the best medical treatment for his cancer? He went to top cancer centers to ask experts – the experts disagreed! At the end of the day, the decision couldn’t be made based purely upon medical assessment. Medical assessments and advice are the domain of medical doctors, outside his (and almost all patients’) knowledge & experience sets. Yet, every day, there are Stage IV cancer patients being asked to make these life altering decisions. You have two treatment teams, both board-certified experts, telling you two different things. You as a non-MD patient are then expected to make a choice. How?……….
It’s All About Going for the Cure
Who knew I would again think of Lance’s book four years later in 2016 when a significant medical decision was thrust into my lap for me to make a decision on?
I think most patients follow a similar decision paradigm that Lance used. Every patient has personal goals and personal parameters that are most important to them. In the case of Lance, having the chance to cycle competitively again after a potential cure was a major goal of his. That drove his decision making. One of his suggested treatment options more clearly left that possibility of future competitive cycling open – so he chose it. For Lance that was the correct medical decision – based not only on medical assessment but importantly driven by personal Life assessment.
Although I am the furthest things from a professional cyclist, I found myself in a similar position this month.
I described my personalized immunotherapy research project in the post SCIENTIFIC GUARDIAN ANGELS APPEAR: VOL. 2. A key component to the project is knowing which mutations are present in my tumors but not seen in normal tissue (i.e. “neo-antigens”). This has already been done on the DNA level (2012 primary tumor & 2015 lung metastasis). The problem is that unfortunately, a previous attempt to get data at the RNA level failed. RNA analysis is key data for personalized immunotherapies because not every mutation at the DNA level generates proteins — which are what the immune system would actually need to see in order to fight the cancer. In order for DNA to produce proteins, it needs to go through RNA, which can be measured by a lab test called RNA-seq. A significant percentage of my mutations at the DNA level thus might be red herrings generated by the tumors, but never generating RNA or proteins, which could significantly interfere with us developing the most effective personalized immunotherapy possible.
Another piece of useful data for the project is to continue to track exactly how my tumors are evolving over time. We already have two snapshots (from 2012 and 2015) – but getting a third snapshot as we get closer to a potential therapeutic is important.
Both of these tests will tell us which neo-antigen mutations were present in 2012, 2015 and functionally expressed as RNA in 2016. This info will allow us to not waste time & resources on red herring or temporary past mutations, which could potentially distract us from the important permanent & new ones. They also will help tell us which ones are “trunk mutations”. Imagine a tumor’s genetics as a tree. You have the original mutations which are the trunk, then over time more and more branches appear as new mutation occur on top of (or replacing) old ones. If you want the highest chance to kill the tumor tree what do you do – aim your axe at a branch? There is a chance that chopping a branch could fatally injure the tree but… ideally you confirm where the trunk is and then you hit it there as hard as you can to fell the entire tree!
Differing Medical Opinions
All surgical procedures carry risks. For lung procedures these include a certain level of risks of collapsed lung (which I have had before!), bleed outs etc. The exact location of the tumors has a significant impact on the level of risk – requiring a careful assessment by an interventional radiologist.
Since I have plenty of tumors (currently in the 15-20 range), a question then was raised: was the risk/benefit ratio of doing a biopsy appropriate to generate a new batch of 2016 DNA and RNA data? Looking at my CT-scans last spring, a fully qualified medical team at UCSD said no – too risky. I was already working with the University of Michigan on a related side issue of the project, for which they asked to review my CT-scans. Looking at my CT-scans in June, a fully qualified medical team at University of Michigan truly surprised me and said yes- the risk was acceptable.
A good analogy I have heard is that as a cancer patient, you are the head coach and general manager. As general manager you hire your key staff and players. As head coach, you draw in advice from your experienced quarterback (usually the medical oncologist) but also all of the other key players (radiation oncologists, surgeons, interventional radiologists, second opinion oncologists etc). After all of that (sometimes opposing) advice is given – you as head coach (and patient) make the final decisions based upon what is most important to you.
So as head coach I made my final decision – University of Michigan here I come!
I’ll take the medical risks and be undergoing a CT-guided lung biopsy for updated DNA and RNA genetic analysis (and maybe more? 🙂 ) at the University of Michigan (my alma mater!) on Thursday!
Subsequently, with recent medical information in hand, UCSD also said yes to the biopsy but by that point I had MANY midwest/east coast summer plans in motion (maybe some later posts!) centered around having the biopsy done in Michigan, so the train had left the station… With any lung biopsy there is that chance of a collapsed lung (as I said above, which I have had before) and if that happens, I won’t be able to fly anywhere for 6 weeks – having the procedure done in Michigan will pre-place me within easy driving distance to my summer midwest & east coast plans. As I said, life & death impacting Stage IV medical decisions are based upon more than just medical assessments. They are based upon Life assessments as well. In the summer of 2016 I am currently alive, that is the one thing I know with certainty in my currently uncertain life! So I will do first what I think is needed to stay alive but also when given options, not sacrifice doing everything I can this summer to embrace life wholeheartedly and my various summer plans are meant to do that.
The University of Michigan team will transfer the data generated to my Human Longevity & UCSD team. Similar to other key players/guardian angels in this project – the University of Michigan research collaboration opportunity unexpectedly fell completely into place and even expanded into unexpected directions – I am very grateful to them for their generous help!
The deciding point for me was, like Lance, to look at my big picture goal in relation to the risk factors. His big picture goal was to cycle again. My big picture goal? To do anything I can in order to maximize chances of curing my cancer! Once that big strategic goal was clear in my mind, the decision point became obvious to me. As that decision flowed down through my consciousness, reinforcing points quickly filled in behind it to cement the decision in my mind. It crossed my mind that at 4+ years out from diagnosis, my game clock is ticking. I always have one eye on that game clock. In cancer, like sports, time management is key. I need to start taking some smart shots on goal. I also consciously thought to myself: if things don’t work… I do not want to have any deathbed regrets of “what ifs”. “What if I had taken the risk to do that biopsy – would it have made a difference in the potential success of my cure research?”
It all comes down to this: My life is literally on the line and I’m playing to win. Period.