I just looked at a house we can probably afford that would fit our needs quite well. It is spacious, with high ceilings, (reasonably) nice on the inside and close to convenient train lines (if not a decent grocery). But I am conflicted. It is ugly. It is offensive to the street. Marred by a series of practical adaptions, scars frozen in place by developers trying to squeeze a profit. Part of me thinks I should stuff my ego (if I cared that much about appearances I'd stop dressing like a schlub, right?). But part of me thinks that by buying an ugly house is becoming complicit in an aesthetic crime, draining the world of potential beauty for expedience and convenience. My real estate agent says I think too much.
My endocrinologist called with results from yesterday's PET/CT scan. He says the scan does show what appears to be a small (5mm) malignancy in my neck opposite the side from which the earlier tumor was removed. There is no other evidence of the cancer. His recommendation is to keep an eye on it but to otherwise just continue the strategy of suppressing it with a slightly-higher-than-necessary dose of levothyroxine. I'm back to the occasional blood-work & ultrasound regimen until something changes.
Since it's going to be around awhile, I figure I might as well name it. What should I call it?
My PET scan is set for next week. Actually, it is a PET/CT scan, which takes PET & CT images at (nearly) the same time, providing a richer view than either type of imaging shows on its own. This type of scan has become the standard, especially for cancer patients.
NYU called me this morning and asked me if I was willing to have an additional, experimental scan done (at no cost to me or my insurer) after the PET/CT scan. They are testing PET/MRI (simultaneous PET and MRI scans) as an alternative to PET/CT scans. This is a newer technology (FDA approved last year), not yet widely deployed in the US, which has advantages including reduced radiation exposure and improved soft tissue contrast. So I get not one, but two double-image, 3D views of my insides next week.
I just listened to the voicemail from my endocrinologist with my radioactive iodine (I-131) scan results. The scan showed no uptake of the radioactive iodine, but my thyroglobulin levels (hTg) after Thyrogen stimulation are still "slightly elevated" (+2.8). This is pretty much exactly where they were last year when I did a Thyrogen-stimulated I-131 scan and before the surgery to remove the tumor in my neck. The takeaway here is there is still cancer somewhere in my body, we don't know exactly how much or where, and the I-131 isn't useful as a tool to find it nor likely to be useful in treating it. This is not the news I was hoping for.
The endocrinologist & surgeon both suggested the likely next step is to do a PET scan, which has a reasonably good chance of finding larger growths of the cancer. If additional tumors are discovered, treatment options vary, depending on the location. The best case scenario is surgical removal (like the surgery I just had). If surgery isn't an option, my treatment options are probably less than ideal.
I'm overdue for another update. My thyroglobulin levels didn't drop significantly after the surgery, so there is definitely still thyroid cancer floating around my body. At this point, my case isn't "textbook" so it isn't entirely clear what the best course of action will be.
If you've been following along, the surgeon was just flat out wrong, as I suspected. As I understand it, the most likely way the recent tumor ended up where it did was because some cancer cells found their way into my bloodstream, took a ride and decided to homestead in the soft tissue my neck. This also means, since it is still around (as indicated by the thyroglobulin levels), it could be growing in other places.
I've scheduled a radioactive iodine scan for the end of the month to see if it can show presence of any additional cancer. My last scan didn't show anything meaning either the cancer isn't concentrated in any one place so it is difficult to see, the cancer cells aren't particularly hungry for iodine (rare but very possible) or they screwed up the last scan.
If this scan shows something, that is good news. It means the radioactive iodine is effective and can be used to treat the, and possibly even eradicate, the remaining cancer.
If this scan doesn't show anything then we don't learn much. It is debatable whether it is wise to treat with radioactive iodine, since it will likely be ineffective. More likely it means waiting to see whether additional growth of cancer makes itself known and deal with it as it comes. If it shows up in places were it doesn't do any harm or is easy to remove, it isn't a big deal. It grows slowly and is "well differentiated." If it shows up somewhere problematic and difficult to reach (e.g., lungs, brain or other critical organs), I could be in trouble.
To prep for this scan, in order to maximize the potential effectiveness, I'm on a low iodine diet (to ensure cancer cells are as hungry as they can be for iodine). This is surprisingly difficult since much salt is iodized (i.e., why Midwesterners no longer get goiters), anything made with salt I didn't add myself is off limits (no restaurant and few prepared or packaged foods). There are lots of other restrictions that make this extra tricky--no dairy, no sea products, no egg yolks, no soy & certain legumes, limited meat, limited grains. The Thyroid Cancer Survivors' Association has a good guide. I essentially have to cook all of my meals. At least, thanks to Thyrogen, I don't have to go off my meds so I'll actually have the energy to cook.
I'm travelling for five days to Portland, OR which is going to be the biggest challenge, especially since one feature of the festival/conference I am attending is a "best of" roundup of Portland's famous food carts. I made myself a big batch of beef jerky and found some salt-free granola and freeze dried fruits to pack. I plan to buy myself some fresh foods (bananas, carrots, etc) while I'm there, and Vinh says Ned Ludd will suffer my insane restrictions and make me a meal. Also, I am allowed to drink beer and coffee. Thank goodness.
I saw my surgeon this morning and got more detail. The tumor I could feel was larger than I thought: 2.3cm x 1.6cm x 0.8cm. They also found small (~0.2cm) satellite tumors. They all tested positive for classic papillary thyroid carcinoma, as expected.
The doctor said this variety of thyroid cancer cannot migrate on its own to soft tissue and there is no evidence that it has transformed to a more aggressive variety. He said the only explanation he could think of is "tumor spillage" (band name?) during surgery or a needle biopsy; but given that I didn't have a needle biopsy before my original surgery, and given the details of the original surgery, this doesn't seem like a plausible explanation, so basically he said "this can't happen but it happened." He also said he finds this case fascinating.
I'm waiting to see how my thyroglobulin levels look. If it drops off to zero, then they likely got all (or almost all) of the cancer. If it stays relatively elevated, I might still have some cancer floating around somewhere else, and it might make sense to attempt to treat it with radioactive iodine. Or not.
Update Facebook comments here
... was pretty much what my endocrinologist told me this morning. To be fair, it has only been a week since the surgery and he hadn't yet seen the final report. I only scheduled the appointment so soon because he's going on vacation in August.
He's not sure what the next steps should be, if any. He is considering recommending a radioactive iodine treatment as an attempt to eradicate the microscopic presence of cancer that is left over (the treatment is easy; the only big downside is radiation exposure, which increases risk for other cancers; and it may not be effective). Beyond that, he said it is very difficult to assess future risks at this point.
We drew blood for a thyroglobulin test, which is the marker for thyroid cancer presence. I'm waiting to see what he recommends once reviewing the surgery & pathology reports, and the results of the latest blood-work; and has had time to think about it.
Tomorrow morning I follow up with my surgeon.
The surgery went as expected. They removed the tumor which was approximately 1cm in size and it tested positive for papillary thyroid cancer, as expected. I was pretty much back to normal by the following day, with the help of some Tylenol.
The twist: the pathologist also noticed that there were microscopic foci of the same cancer in soft tissue surrounding the tumor. The surgeon took more distant samples from surrounding soft tissue and saw more of the same, in every sample he took before he stopped taking samples. I don't know what this means yet, and will be following up with my endocrinologist this week to discuss options. The surgeon said it is unusual to see spread of this type of cancer beyond the thyroid bed.
Also, this surgery cost me $1,000 on top of the nearly $10,000 in premiums and copays I pay in a year. I'm fortunate that I can cover that kind of unexpected expense with cash reserves at this point in my life, but there was a time when that wasn't the case and I may have had the hard decision of digging the debt hole deeper or just not proceeding. And that sucks.
Now that I know what I'm dealing with, it is ok to ask me about how I'm doing. I forgot to mention that. I came out of the Scary Land of the Unknown a few weeks ago when my surgeon followed up.
My hunch that "this isn't anything to worry about" was true. I am having surgery on July 19th. It is a relatively minor surgery, so I'll be out the same day. I have a high degree of confidence in the surgeon, the risks of the operation are very low, so I am not very concerned. My parents are coming into town because they worry too much (because they are parents). It will be nice to see them and have a couple of days off, especially since their last trip to NYC was cut short.
I met with a surgeon (who specializes in neck, and specifically cancer, surgeries) yesterday to get his opinion. Upon reviewing my case so far, his initial recommendation matched my endocrinologist's opinion that, while surgery was possible, the likely benefit (which is, long term, probably little-to-none) wasn't worth risking digging around my neck. Then he got out the ultrasound to take a look and discovered that the mass at the site of the original biopsy is actually not attached to a lymph node, but is on a muscle just under my skin. He thinks it has probably been there since the original surgery and has grown slowly since then. While he said it is probably not going to do me much harm, because it is in an accessible place, the risks of surgery are greatly reduced and changed his opinion to recommending surgery.
So the surgeon wants to do surgery. Surprise! However, first he wants to review the surgery report from the original surgery, re-review the CT scan and have the slides from the first biopsy re-evaluated to make sure everything lines up. Which means two more weeks of waiting. But overall, it sounds like this isn't anything to worry about whether I have surgery or not.