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…

Lance Armstrong

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-seqA 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!

Doctos arguing

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.

2016-05_Tom Run_Finish Line

34 Comments on “Scientific Guardian Angels Appear Vol. 3: Univ. Michigan Lung Biopsy

  1. Best wishes in Ann Arbor, Tom! We’ll be thinking about you and rooting for you. Any chance you’ll be in Kalamazoo?

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  2. It sounds like you made the right decision. Sometimes, you’ve got to accept some risk to get to the other side of the river.

    Liked by 1 person

    • Exactly. When faced with death… (under the guidance of medical professionals) risks are both justified and necessary…

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  3. All the best in Ann Arbir, Tom! What are the chances that the ever so important RNA analysis fails again? Why did it fail the first time? Does it make sense to do this in multiple labs in parallel assuming the sample is big enough? Sorry if these were answered in earlier posts.

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    • Good to hear from you Rob and (as expected from you) good questions. RNA-seq failed at the biopsy level last time, not in the lab. Theoretically it makes sense to run the RNA-seq in parallel, but I am not sure if enough material will be obtained (my tumors are numerous but small). UMich has an excellent & highly recommended sequencing facility. I am hoping that if there is extra biopsy material it can be used for some VERY cool extra stuff (crossing fingers……………) instead of assay redundancy – but number #1 on the to-do list is RNA-seq!

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  4. Dear Sir,
    I follow your blog to hear news concerning treatments. You write about very important issues for me, so I would like to thank you for sharing these news.
    I would like to introduce in few words ourself. My husband (49, MD) has mCRC too. He has ca. 20 meta in liver. According to the last MRI from end of May, there is partial response to second line treatment. He has been diagnosed last year in May. This week he has finished 10th cycle of second line treatment (beva+ FOLFOX4).
    You are right that there is a need to be a manager, and I am the one who do it for my husband (though he is a Phd MD he does not want to read the papers concerning his illness, it is too stresfull for him). Since I am an MD too and work in pharmaceutical industry (pharmacovigilance, clinical trials, etc) I am the one searching the world webs to find solution. My husband says that I am the GM responsible for coordinating all issues concerning his illness.
    I am sure that you have done the right thing having this biopsy. If my husband had chance to have an individualized treatment (with RNA analysis etc) I would not think twice, and do everything that my husband agreed on it.

    I hope that everything goes well and look forward to your vol.4 information in your blog.
    Katarzyna Kopec
    Poland

    Liked by 1 person

    • Thank you for your comment Katazyna and thank you for reading. You are so very right, it is important to have someone act as a patient’s general manager. Often it is either the patient or his/her caregiver but it can be anyone (friend, family member etc) who is trusted! I wish your husband all the very best and thank you for being there for him as both spouse and GM – that is a very tough job to undertake… Take care, -Tom

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  5. An excellent article both medically and personal as it relates to your story. Will trust that all will go well in AnnArbor on Thursday, and will be praying for this procedure to go smoothly, and for you to receive the best care possible. May God guide the hands and minds of all those who are apart of this, and may you and your family be able to embrace a beautiful summer.

    Liked by 1 person

    • Hi, I am a new member. In my case a small uterine tumor, which had escaped yearly scans, sent more than 50 malignant nodules to my longs before being discovered via routine cancer marker blood test. I am very grateful to you for sharing your knowledge and insights, especially as I live in Singapore far removed from the capabilities in the US. I have no medical background and do not know what more to do with my pathology samples at this point so I am learning all I can from your posts. I do know exactly how it feels to recover from a CT guided lung biopsy from two months ago, and I will be thinking of you on Thursday. Hope your holidays are everything you dream of, and more.
      Best.
      Edith

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      • Thank you Edith! 🙂 I am wishing you all the best in your medical treatments in Singapore – thank you for reading and commenting! -Tom

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  6. Tom,
    Thank you for this and sending good vibes that all will go well in Ann Arbor. I know it will. As a cancer advocate and “lay person” researcher for my soulmate’s rectal cancer journey, I try my hardest to read and understand everything I can. Sometimes I get frustrated because it’s above my head. I want to leave no stone unturned. This is the same with walking the line between evidence-based versus evidence informed solutions. Walking that tightrope is daunting and I often get frustrated not knowing what is best. Your words, “identifying big picture” goals in overcoming cancer is his goal. So it’s my goal too. Thank you for this article as it gives me further encouragement to continue to do the best I can to bring as much research, but most of all joy to his life and mine. Thank you again Tom…

    Liked by 1 person

    • Maurella,

      You sound like an amazing advocate & layperson researcher for your soulmate! Thank you for the kind note and wishing you all the very best in your own endeavors to help as well as best wishes for your soulmate.

      All the best, Tom

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  7. Thank you Tom for this update. Prayers and loads of positive thoughts are being sent your way for a successful and safe “ride” toward your personal immunotherapy cure! I keep praying for a smoother ride for all those fighting Stage IV CRC. Jim had a CT Scan today with a CEA and CBC Auto Diff blood tests to follow tomorrow. I’m on pins and needles waiting for these “numbers.” He’s out making deliveries and moving on with life. I can’t say why it always gets me uptight but the waiting game is frustratingly long for me. Is that the man vs woman thing rising up to smack me in the face saying “don’t worry about it?” Or is it that I say things aloud and Jim just doesn’t. It’s too funny how we each look at the same picture and end with different views. Thanks again for your words of encouragement for all of us related to this subject. Enjoy the ride-

    Liked by 1 person

    • Hi Becky – I’m hoping the very best for Jim’s test results! I have interacted with probably thousands of patients – I don’t think it is a male vs. female thing or even necessarily that one is always just more outspoken than the other. I have seen the entire spectrum of responses to scan/test anxiety – both what patients/caregivers feel internally as well as how they respond externally. No matter what the results, we’re stuck on this crazy stage IV ride – so let’s try to enjoy it as much as we can.

      Take care and thank you for the note,
      Tom

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  8. Great read. I read all your post and I just know their are many more marathons and a couple of daughters weddings still in your life. I would bet on it.

    Liked by 1 person

  9. Your posts are so helpful! I worry every time I’m faced with one of these decisions. This really helped me to put things in perspective. Best of luck to you on Thursday. We will be waiting to hear the results. Otherwise, enjoy the summer, your new pool, your family, and please do a cannonball for luck. 🙂

    Liked by 1 person

    • I’m glad you enjoy my posts Delinda and that you find them helpful. Thanks for the good luck wishes, unless something major happens on Thursday (which I am hoping will not be the case haha) I’ll probably only post an “all’s well” on my Facebook and Twitter feeds – but both are public, so you’ll know! The next project blog update probably won’t be for a while as the new data is crunched as well as other data in progress. I will definitely do a cannonball for luck every time I see a pool on my travels this summer! Thanks for the note! -Tom

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  10. Tom,
    As always, you, Veronica and the girls are in our thoughts and prayers.
    (Go Blue!)
    Greg & Parisa

    Liked by 1 person

  11. Very exciting developments in your treatment plan. Wishing you the absolute best of outcomes and a fantastic summer. thank you for sharing. I love your blog.

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  12. Thank you for sharing this decision with the world.. especially the cancer community. As someone with Stage 4 MBC I am in good shape with a good clinical trial going. But I am always on the lookout for something better or needed if this one fails. I appreciate your insight into how you made your decision….at the end of the day, it is OUR decision as we are the ones who live(or die) with the consequences. That’s easy to get lost when you are dealing with Dr’s, especially at prominent cancer centers. Sometimes easier to just take what they give you. Really helpful post, Tom, I have a feeling I will come back to it again.

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    • Thank you for the note Susan – it is forgotten too often that medical teams give advice but it is up to the patient to chose. Thanks for reading! -Tom

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  13. Dear Tom,

    What a great plan. I bet you feel relieved after making your decision. Do you know if you are going to have the biopsy done via bronchoscopy, and if so, will they use electromagnetic navigation bronchoscopy? When I was in fellowship, they had just gotten this new toy and it worked amazingly. As we know, no procedure is without the risk of complications, I am praying that your providers do their utmost to minimize any problems or discomfort. If you ever do develop any future pneumos, I hope they use a pigtail instead of a chest tube. Will be looking to the sky on Thursday to make sure love is sent your way in Michigan. Anne

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    • I believe it will be a needle biopsy, I’ll definitely make a note to ask about the pigtail – thanks! Thank you for the skyward looks 🙂 Tom

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  14. Pingback: Go Blue! | AdventuresInLivingTerminallyOptimistic

  15. I have a bronchoscopy scheduled for tomorrow. Third one. Had a rigid bronchoscopy a couple months ago to remove tumor blocking upper right lobe which had collapsed for third time. Pulminologist was sure it was dead this time. was thinking of a stent but didn’t. Think the lobe is working fine again. Had one 2 1/2 years ago which started as a biopsy but turned surgical as they removed large tumor. CT scan results for latest said I am in much better shape now than then. In that 2 1/2 years have had six cycles of Folfiri + Avastin and last October 25 days of radiation. Nothing since but baby aspirin and injections of a rat virus intradermally every couple of weeks. My own off the reservation therapy. November 1st is ten years fighting Metastatic Colon Cancer. Been my own doctor most of that time using sDCA first two years after metastatic DX. Worked great, reduced tumor 65% at first then stable for two years. Was told I had 6 mo to a year if I refused chemo. After sDCA, quit because of peripheral neuropathy, and did 11 cycles of chemo which worked great also but I thought I was going to die. My MSK oncologist gave me 9 months if I quit. Moved to Florida and did sDCA and Vidaza for three months then nothing for another year.

    There is more but here I am almost 10 years and feeling great, sailing, swimming and biking. Last June when I again stopped chemo after six cycles visited my second opinion oncologist at MSK in New York and again she insisted I stay on chem. Two weeks ago visited with her again and after reviewing my latest CT report she said I should do NOTHING, no chemo, no radiation and no trials, just wait for symptoms and get regular CT scans. Said my tumors looked to be “indolent”. I asked about my Hylar tumor which was going to kill me in as little as weeks according to a surgeon then (wrapped around my SVC vein and almost closing it) and she said it was calcified and necrotic.

    Love your blog and wish I had your knowledge base since I have never had a course in Biology.

    BTW the latest removed tumor material I claimed and it has been treated with enzymes and I am trying to get it irradiated so I can infect it with my rat virus and inject it as a vaccine. All off the reservation stuff. Thinking also of inhaling the virus to get right at remaining tumor but that is scary because initial response of tumor could be to double or more in size before immune system kicks in Love to try a checkpoint inhibitor with the virus but have no access.

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  16. Pingback: Band of Brothers and Sisters | AdventuresInLivingTerminallyOptimistic

  17. Pingback: The Power of Stage IV Cancer Hope | AdventuresInLivingTerminallyOptimistic

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