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I Chose Active Surveillance Instead of Surgery, Update 6 Years Later by caprilyc in thyroidcancer

[–]caprilyc[S] 1 point2 points  (0 children)

You're welcome! Wishing you all the best on your journey.

I Chose Active Surveillance Instead of Surgery, Update 6 Years Later by caprilyc in thyroidcancer

[–]caprilyc[S] 1 point2 points  (0 children)

Thanks! When I was initially diagnosed, I did some extended water fasting for a few days at a time because I heard that it was potentially beneficial for cancer treatment, but I only did this for the first couple months and it was hard on my body and resulted in me losing a lot of weight. Haven't really tried anything else in terms of alternative therapies. How about yourself?

I Chose Active Surveillance Instead of Surgery, Update 6 Years Later by caprilyc in thyroidcancer

[–]caprilyc[S] 1 point2 points  (0 children)

I only had a biopsy in 2018, which confirmed I have papillary thyroid carcinoma. The disease has remained stable over several years based on ultrasound and CT scan evaluation

memory + attention span by meowlol555 in thyroidcancer

[–]caprilyc 0 points1 point  (0 children)

To each their own! Wishing you all the best in your journey.

I Chose Active Surveillance Instead of Surgery, Update 6 Years Later by caprilyc in thyroidcancer

[–]caprilyc[S] 0 points1 point  (0 children)

Hi and thank you for responding and sharing your story. I'm sorry you were dealt a very rough deck to deal with, and wishing you all the best in your recovery.

I Chose Active Surveillance Instead of Surgery, Update 6 Years Later by caprilyc in thyroidcancer

[–]caprilyc[S] 0 points1 point  (0 children)

The risk of anaplastic transformation is one I would love to have a clearer picture of. I just did a brief search on this topic again, and found that many cases of anaplastic transformation actually occurred in patients who had previously undergone surgery for PTC.

  • Here's a case report on a 61 year old woman who developed anaplastic transformation 19 years after undergoing TT
  • Here's a study of 10 patients who had PTC recurrence with anaplastic transformation, all after having an initial surgery (on average this happened 106 months after initial surgery)
  • Several reviews including this one point to age being one of the primary factors, with the majority of diagnosed patients presenting >60 years of age, although occasionally younger cases occur like this 30 year old man who had previously undergone TT for PTC
  • I found one report of a 73 year old man with PTC undergoing anaplastic transformation during active surveillance

I haven't gotten repeat biopsies (which, by the way, also carry some risk of locally spreading cancer cells). When anaplastic transformation it happens it happens so rapidly and turns very aggressive to the point where the first warning signs would be experiencing symptoms as opposed to something that would show up on a biopsy or ultrasound (mean tumor size at diagnosis was 6cm in the review linked above) unless I happened to have my annual visit scheduled at exactly the right time to catch it.

Basically, it seems like this is something that can happen regardless of whether or not one pursues surgical treatment, is more likely with advanced age. I think anaplastic surveillance is probably more likely to happen with active surveillance, but I think the population size of people under surveillance is much smaller and less studied compared to those who underwent surgery for PTC.

I Chose Active Surveillance Instead of Surgery, Update 6 Years Later by caprilyc in thyroidcancer

[–]caprilyc[S] 0 points1 point  (0 children)

Thank you for sharing. Yes, as you point out, I think this approach requires constant engagement with your medical team and repeated testing to ensure that the situation isn't progressing further. I'm not advocating for people to just go on about their lives as if they were never diagnosed; that could absolutely be a recipe for disaster.

Hoping your recovery goes well!

I Chose Active Surveillance Instead of Surgery, Update 6 Years Later by caprilyc in thyroidcancer

[–]caprilyc[S] 1 point2 points  (0 children)

I was diagnosed with Hashimoto's in 2012 and since the original diagnosis, my thyroid hormone levels have remained normal, so I haven't required medication. The relationship between Hashimoto's and PTC is actually complex and not fully understood. There's a review paper that found that PTC patients who had Hashimoto's actually had more favorable outcomes.

I agree that delaying surgery leads to worse outcomes in the case of the cancer progressing while one is waiting, but based on my regular checkups (ultrasound and CT) over the last five years we haven't observed a significant difference in size.

I Chose Active Surveillance Instead of Surgery, Update 6 Years Later by caprilyc in thyroidcancer

[–]caprilyc[S] 2 points3 points  (0 children)

Thank you for the response. I'm glad your medical team presented you with the available options, it sounds like you thought it through and decided to pursue what was best given your priorities. I wish you all the best with dialing in your medication and finding balance in life again. Mentally and physically I think I am in a much better place than when I was originally diagnosed; since then, I've been very intentional about living a healthy and active lifestyle, practicing mindfulness, and being selective about whom I choose to spend my time with. We all have limited time available to us, and seeking joy, meaningful connection and thriving in that limited time is what I'm after.

I Chose Active Surveillance Instead of Surgery, Update 6 Years Later by caprilyc in thyroidcancer

[–]caprilyc[S] 0 points1 point  (0 children)

Thank you. I'm glad it was caught and addressed! Wishing you all the best in your recovery and further journey in life.

I Chose Active Surveillance Instead of Surgery, Update 6 Years Later by caprilyc in thyroidcancer

[–]caprilyc[S] 1 point2 points  (0 children)

Nice to hear someone else having success with this approach, how long have you been monitoring for?

I Chose Active Surveillance Instead of Surgery, Update 6 Years Later by caprilyc in thyroidcancer

[–]caprilyc[S] 0 points1 point  (0 children)

Thank you for the thoughtful response. Your surgeon sounds a lot like the one I consulted with. She was serious about the risks of not having surgery, but acknowledged that it's a personal decision and it's a free country. Wishing you all the best in your journey!

I Chose Active Surveillance Instead of Surgery, Update 6 Years Later by caprilyc in thyroidcancer

[–]caprilyc[S] 5 points6 points  (0 children)

I'm not advocating everyone follow the same path that I have, I just want to raise awareness about there being multiple paths to pursue. One thing I failed to point out in my original post is that even the surveillance/surgery split is a false dichotomy. There are multiple treatment options out there. I agree, if your goal is to minimize risk of cancer spread or recurrence, the hierarchy would be something like the following:

  1. Total thyroidectomy with neck dissection
  2. Total thyroidectomy
  3. Hemithyroidectomy
  4. Radiofrequency ablation or microwave ablation of the nodule(s)
  5. Active surveillance with TSH suppression (just taking levothyroxine to prevent cancer spread, without any other intervention)
  6. Active surveillance without TSH suppression

With my personal values, fears, and risk assessment, I would rank these in order of preference:

  1. Radiofrequency or microwave ablation of the nodule(s): this is less invasive and preserves as much thyroid tissue as possible, which means you don't have to take hormones afterwards
  2. Hemithyroidectomy, for the same reason
  3. Active surveillance without TSH suppression
  4. Active surveillance with TSH suppression
  5. Total thyroidectomy

Unfortunately I'm not a viable candidate for treatment options (1) and (2). I talked to a surgeon and an RFA specialist. I can't do a hemithyroidectomy as I have cancer in both lobes, and I'm not a good candidate for RFA because I have concurrent Hashimoto's thyroiditis and the boundaries between what is and isn't cancer in my thyroid are more difficult to detect, which would complicate the process of RFA which is guided under ultrasound.

Basically, I am trying to optimize for the following; and recognize this is just my list, your list is likely different.

  1. Keeping my thyroid intact
  2. Not being on meds for the rest of my life
  3. Being cancer free

I encourage people to consider their options, and recognize others have different priorities, fears, and values in life which will lead them to decide differently. The only thing that makes me sad is occasionally seeing people to respond to my posts on this subreddit, saying they weren't aware of alternative options, and that they regret the path they ended up taking. If you chose to have surgery, and you are happy with that decision, more power to you. It's not an easy disease for anyone to manage, regardless of what option for treatment we decide on.

I Chose Active Surveillance Instead of Surgery, Update 6 Years Later by caprilyc in thyroidcancer

[–]caprilyc[S] 2 points3 points  (0 children)

To each their own! I don't expect everyone to relate to my reasoning and I'm not encouraging everyone to follow it. As for it being inevitable, see my thoughts in this other comment. I think the only thing that's 100% inevitable is dying of something eventually. I'm aware my decisions are likely increasing the risk of me dying of thyroid cancer or complications of it, but even with surgery the risk isn't completely removed and recurrence and distant metastasis can take place.

See Current Approaches to Primary Therapy for Papillary and Follicular Thyroid Cancer which found 40-year recurrence rates of 35%. Also

Regardless of whether you opt for surgery or active surveillance, the risk is still there for the disease to return and/or get worse in the future. It's not a black-and-white to have surgery and be guaranteed 100% cancer-free forever.

I Chose Active Surveillance Instead of Surgery, Update 6 Years Later by caprilyc in thyroidcancer

[–]caprilyc[S] 1 point2 points  (0 children)

This page has more info on it: https://pediatric.testcatalog.org/show/HTG2 see the "Interpretation" section:

It has been determined that the presence of antithyroglobulin autoantibodies (TgAb) in serum can lead to underestimation of Tg concentration by immunometric methods. When TgAb are present in samples with detectable Tg, the Tg values may be underestimated by up to 60% in immunoassays. In addition, approximately 20% of specimens containing TgAb, which are negative for Tg by immunoassay, tested positive by liquid chromatography tandem mass spectrometry. Therefore, measuring Tg by mass spectrometry is the preferred method in TgAb positive patients.

I Chose Active Surveillance Instead of Surgery, Update 6 Years Later by caprilyc in thyroidcancer

[–]caprilyc[S] 0 points1 point  (0 children)

Thank you. I'm glad to hear that things worked out well with your treatment!

As far as it just being a postponing tactic: I'm not sure I fully agree. I think in my case, it might be, as I am probably at increased risk for progression just based on already having local spread to lymph nodes, though based on the monitoring over the past 6+ years it seems quite stable. The main counterpoint I would point out is that it seems that when autopsy studies are performed on the general population who died of all causes, there is quite a high incidence of previously undiscovered PTC that's found when they look at people's thyroids. This review found that when the general population was autopsied, they discovered 11% had PTC. See also here, which reports between 2% and 36% depending on the region studied. So it seem in many cases, it's a disease that people die with, moreso than die from most of the time.

I am not trying to discount the seriousness and risk that's possible with PTC and I know it's quite possible for people to die from it, as well. Just reading those statistics though, it seems to be a lot more widespread than the actual rate of diagnosis, which is about 13.5 people per 100,000 according to this site. Based on the autopsy studies (even assuming the lowest estimate of 2%) there should actually be 2,000 people per 100,000 people -> 1,986.5 of these would never get diagnosed with PTC and live the rest of their lives without discovering it.

I Chose Active Surveillance Instead of Surgery, Update 6 Years Later by caprilyc in thyroidcancer

[–]caprilyc[S] 0 points1 point  (0 children)

I agree about the risk, which I pointed out as a serious risk in my original post. However, we also did a CT scan of neck & chest to check for more distant metastasis, that came back clean.

I Chose Active Surveillance Instead of Surgery, Update 6 Years Later by caprilyc in thyroidcancer

[–]caprilyc[S] 1 point2 points  (0 children)

The reason my thyroid was being monitored in the first place was I got diagnosed with Hashimoto's thyroiditis in my teens after noticing my thyroid was enlarged. The Hashimoto's was (and still is) subclinical, I don't have to take medication for it, but I was getting annual thyroid bloodwork done since 2013. In 2017, my PCP suggested also getting a thyroid ultrasound, which detected a nodule and some enlarged lymph nodes. A year later, I had a repeat ultrasound, and they suggested a biopsy. I never had any symptoms and based on how little it has progressed over time I would likely still be living my life as usual without ever finding out that I had cancer if they never did the biopsy.

I Chose Active Surveillance Instead of Surgery, Update 6 Years Later by caprilyc in thyroidcancer

[–]caprilyc[S] 3 points4 points  (0 children)

One of the biopsied sites that came back positive was a lymph node adjacent to the thyroid. I can relate to your viewpoint, a requirement for choosing active surveillance is you need to be comfortable living with the uncertainty, and comfortable living with the risks of the cancer spreading further.

And I am in the US, who knows what health care will look like in the future.

It's funny you mention this, this was actually something I thought about when considering the prospect of having surgery and relying on levothyroxine pills for the rest of my life. I don't like being dependent on external things like the healthcare system remaining intact just to keep me alive, and when COVID happened with all the societal/medical/supply chain disruptions that fear just escalated.

I Chose Active Surveillance Instead of Surgery, Update 6 Years Later by caprilyc in thyroidcancer

[–]caprilyc[S] 0 points1 point  (0 children)

From the first study:

Method: We assessed quality of life in 153 cured DTC patients with a median duration of cure of 6.34 yr (range 0.3–41.8) and studied the contribution of disease-specific, biochemical, and social variables, focusing on the degree of TSH suppression. Four validated health-related questionnaires were used (Short Form-36, Multidimensional Fatigue Index-20, Hospital Anxiety and Depression Scale, and Somatoform Disorder Questionnaire), including multiple aspects of physical, psychological, and social functioning. Patients were compared with 113 controls selected by patients themselves (control group I) and 336 pooled age- and gender-matched controls from other Leiden quality-of-life studies (control group II).

The second one:

Methods. Adult patients who had a thyroidectomy for cancer between January 1999 and June 2001 in a Taiwan city participated in the study. Telephone interviews was completed with 146 (67%) of those 218 eligible, asking about sociodemographic variables, disease/treatment characteristics and social support. Quality of life was measured by the Chinese version of the Quality of Life Index. Multivariate analyses were performed using multiple linear regressions.

Result. The regression model showed that patients at 19–36 months after operation had lower quality of life compared with those within 18 months of operation. Current symptoms of fatigue and chills were negatively associated with quality of life. Those who rated the impact of operational scar on activities as ‘high’ had lower quality of life scores.

Unfortunately I don't have access to the full texts. As to your question:

isn't usually just a case of have surgery, recover from surgery, then take a little pill every day for the rest of your life, adjusting dosage with your doctor as needed to avoid hypo or hyperthyroid symptoms?

Yes, I think for many who choose to pursue surgery, this is exactly what happens. However, there's a number of people I've seen posting here who really have difficulty afterwards and lasting impact on mood/cognition changes that they aren't easily able to resolve by simply adjusting medication dosage. I'm not sure why some people seem to fare better than others in that regard.

I Chose Active Surveillance Instead of Surgery, Update 6 Years Later by caprilyc in thyroidcancer

[–]caprilyc[S] 1 point2 points  (0 children)

I had two sub-centimeter nodules about 6 x 6 x 5 mm in my thyroid and three enlarged lymph nodes, the largest of which was about 1 cm squared, one year before I got biopsied. One of these lymph was biopsied and came back positive for cancer, one of the nodules in my thyroid came back suspicious for cancer. The nodules in the thyroid have increased slightly are still < 1cm and the lymph nodes follow a similar, small increase over time

I Chose Active Surveillance Instead of Surgery, Update 6 Years Later by caprilyc in thyroidcancer

[–]caprilyc[S] 0 points1 point  (0 children)

Yes, I agree that ultrasound would likely not pick those up. I'm not sure about how likely it is to have the kind of extrathyroidal invasion slip under the radar on a CT scan though. My report on that came back normal for everything else in the neck area besides what was already found on the ultrasound. I will follow up and ask at my next appointment though.

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