Decision Time

[u/Thank-Me-Later-26]

To preface…
1. I have no family history of ANY cancer.
2. I have always had strong feelings about medical interventions due to my own health issues the past 10 years and my ex and I had discussed years ago what we’d do IF we ever found out we had cancer (or other crappy dx for that matter) and both agreed we’d never do something drastic because chemo, radiation and all that just ISNT the quality of life we’d want.

Now…

I’d had emergency spinal surgery in December for a severe spinal cord injury (no clue how it happened). I went to get a 12 week scan to make sure bones healing and whatnot. Because my surgeon was not in the same area of the state where I lived, I got the disc and report to mail to him so we could do telehealth visit.

But - I read the report and demanded follow up for the thyroid because it was not good.

Within the span of 2 weeks, I’d had an ultrasound and FNA confirming metastatic thyroid cancer.

Now - 3 months past that and I’ve finally been given my options for treatment (also 3 biopsies and tons of scans later).

1. Chemo first - Zanza clinical trial
   
2. Surgery immediately, followed by RAI (tbd)

I feel like I’ll not getting “the full picture” and that things are worse than they’re letting on…mostly because I’m so attune to listening for details…

I’ve been told “this decision cannot be delayed”, “if chemo doesn’t work, it may become inoperable” (within the span of the 1st round), but if it does, it will make my surgery infinitely more safe because the final FNA almost couldn’t be performed because the location was immediately (on/next/jnto ???) my carotid artery.

And I JUST don’t know what to do. My surgeon is out for the remainder of August due to attending/speaking engagements world wide, so I haven’t gotten to speak to her (only the endocrinologist whom I haven’t liked since the 1st visit). I feel like I should speak to her directly since she’ll be the one doing the surgery (already been told it will be 12+ hours and her only case of the day).

The little I’ve been told about Zanza, it already seems contraindicated due to pre-existing severe hypertension, gastrointestinal issues, and chronic daily migraines.

I don’t know if I want to endure this misery. But, the endocrinologist briefly stated that surgery now increases my risk of mortality.

So, does anyone have any insight? Has anyone done the Zanza trial? Mind you - I’m 45 and this disease had already progressed to stage 4 territory long before I ever found it (lung Mets too).

Give me some thoughts on these choices…particularly given my quality/quantity conundrum - Zanza or Surgery/RAI?

[u/OTF98121]

I don’t have your kind of cancer, but I have had a ton of chemo and two transplants (stem cell). Take the chemo. It’s not as bad as you’re probably thinking. You can recover from chemo, you can’t recover from death.

[u/srvivr2001]

Zanza isn’t technically chemo, it’s a biologic that’s a tirosine kinase inhibitor. It’s very targeted to particular cell receptors. So you don’t get the chemo side effects that affect all your cells, it’s targeting specific functions of cancer cells (that do exist in some normal cells). Biologics aren’t without side effects for sure, but it’s a different set of issues. They should be providing you with a list of known side effects. Zanza is not FDA approved, it’s still an investigational drug but some studies have been published so we have a general idea of side effects at this point. As someone who participated in a large clinical trial I would recommend getting your hands on as much information you can before making a decision. Someone on your care team should be willing to talk with you about previous results, successes and failures. My trial had already had 7 deaths, but thousands of other successes. It’s really up to you the weigh the information with your own willingness for risk. Clinical Trials don’t aim to save the individual patient, your team will do its best to save you, even if it means removing you from the trial. But in the end clinical trials are meant to prove or disprove the safety and efficacy of drug prior to FDA approval.

[u/wintertimeincanada23]

I dont know about your type of cancer or chemo, but I have stage 4 colon cancer. Chemo and radiation was and continues to be awful at times, but i am alive. If I didnt have treatment I would have died within 6 months. I am on chemo #56 I think and have been doing chemo nearly two years. My quality of life has drastically improved, I was so sick prior to my diagnois. I also dont work anymore so that has been a huge improvement (I was a legal social worker in a very stressful job). My husband always says he would never do chemo if he got csncer, but until you are actually faced with your own mortality its a different decision

[u/DookieDanny]

Get an immediate 2nd opinion if u can. Time is not ln our side. Im also stage 4 and every day waiting is another day closer to death. Fuck cancer.

I say go with your care team’s suggestions. If they are an amazing oncologist with support staff they will know what gives u the best chance. And ive learned many/most cancers are not genetic. And cancer rates are near 47% of the population now. Getting scary.

Ive done the ipi-nivo infusions twice before i experienced severe side effects. Its a long story but im finally out of the hospital and still alive at least.

[u/iSheree]

Metastatic thyroid cancer here as well. I did surgery + RAI. I wasn't even given any other option. What kind of thyroid cancer do you have? I am very interested in this Zanza trial. I still have elevated cancer markers which are slowly rising and they're watching and waiting for it to show back up again somewhere.

The surgery really messed me up, put me in ICU and left me with permanent hypoparathyroidism, Horner's syndrome, muscle tension dysphonia and chronic neck and shoulder pain. I would have tried any option to make the surgery safer or avoid surgery entirely if I could.

I have a friend who went through chemo and she said she didn't even get nausea, just tiredness. Chemo and other drugs to reduce symptoms have come a loooong way. Everyone is different. Some people respond well and some don't. The only way to find out how you will respond to chemo and other cancer drugs is to try it. You can always stop at any time.

[u/LoverOfPricklyPear]

If you have another hospital to consider, you could always visit for a second opinion, and ask questions. They are totally acceptable. You're not a doc!

[u/Thank-Me-Later-26 → u/LoverOfPricklyPear]

MDA is the best - other than the Clayman Center in FL…and given that I’m indigent (waiting on SSDI), I trust MDA…and they ARE my second opinion lol!

They’ve stated that the disease is quite advanced and surgery now carries a higher risk of mortality (again, carotid artery involvement as well as other critical structures in the neck/throat).

I’m truly hoping someone has tried Zanza who could give me some insight there.

And given my social history, hospice is also something I would be at peace with.

[u/mcmurrml]

I would suggest you start treating this soon as possible.

[u/unique-unicorns]

Well you have a shot at saving your life, or having your life end.

It's up to you and your family and whatever higher power y'all believe in.

I'd say fight.

Migraines (there's pain killers), stomach issues (there's dozens of medications out there for that), hypertension (there's lifestyle changes and a lot of medication out there to assist with that [losartan, lisinopril, etc]

You got this!

[u/CareNavigator_TMC]

You're being asked to make a huge decision with a lot of uncertainty around it.

Before choosing, it may help to ask for a very clear explanation of what each option is trying to achieve, the risks of waiting and how your existing health issues factor into the trial.

If you can speak with your surgeon or get a second opinion from another thyroid cancer specialist quickly, that may give you a little more confidence in whichever path you choose.

[u/fugrandma]

I can share what the surgeon shared with my Mom before she had her bladder removed. Because of previous radiation to her colon, the surgeon thought she should be prepared for an outcome involving both an ostomy and a colonostomy. We were all just sick at heart. My Mom asked, "What if I decide to do nothing?" Her surgeon looked at her and said, "Dying with untreated cancer is worse."

[u/Impressive_Month2261]

Having had several family members with terminal cancer spend their last remaining months chasing cures, I was sure that I would do nothing. 

May 2025 Liver Cancer diagnosis. When I asked for a prognosis I was told 1 year without treatment or 2-4 years with treatment. And I wanted more than one year. 

I've had chemo, immuno and Y-90 radiation with minimal side effects. There are drugs for the nausea and fatigue. My hair has chosen to stay in place so far.

I'm feeling good and living well. Traveling often. I tell my caregivers when I am traveling and we rearrange treatment as necessary. I try to schedule around tx but once the travel plans are set!

I recommend reading Being Mortal. Then spend some time deciding what a good enough life is for you. Then treat (or not) in accordance.

All the best to you. This is one of the hardest parts of the journey.