# Path results are in from PT 8/13/2013



## catherinelyn (Jul 17, 2013)

So my surgeon called me last night and the news is not so good---it was papillary cancer, 1.1 cm, fully encapsulated with clear lymph nodes. He made a point of saying "the cancer is gone" but the rest of the thyroid, although not really enlarged, does show evidence of inflammation consistent with Hashi's.

Now I have another critical decision to make. He said my endocrinologist will be calling me to discuss. Basically since the cancer was so small and with no lymph nodes involved we could be done with I guess ongoing monitoring. If the endocrinologist wants to do RAI, then I'll need to do the completion surgery first.

My initial thought with the Hashi's and the cancer is YES TAKE IT OUT!. But I have such bad fatigue, muscle aches, joint pains due to possible CFS (which I am being treated for) and I'm really, really worried about the trauma of another surgery, RAI and going hypo and how it will impact my existing fatigue and functioning.

Then in the back of my head I keep remembering my endo saying that he HAS had some patients with thyroid cancer with severe symptoms like mine that "mysteriously" got better with treating the cancer. I'm thinking, having read some of your stories, that maybe getting rid of the hashi's disease ridden thyroid maybe was the reason for the resolution of symptoms?

So what to do????


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## Velcro (Jul 26, 2013)

So sorry for the bad news. I haven't been down that road yet to have to make a surgery decision, but personally, I would be having the rest out. I know you have fear of what another surgery would do to your other condition, but I know that for me, every time I got a bump, sore throat, irritation or anything around my neck I would be always going, "Oooh, is it cancer in the other side?" I think the anxiety about worrying about it the rest of my life would drive me bonkers.

It's a tough decision and only one you can make, but I would ask myself could you live the rest of your life without worrying about it?


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## Eliza79 (Jul 23, 2013)

Oh I am so, so sorry. I was hoping your pathology would be benign and have been thinking of you ever since your surgery. I would feel the same way you do-- uncertain about going through another surgery and anticipating the difficulties of recovery. It is a very tough situation and I think Karen, who recently had two surgeries, would be able to offer advice and words of comfort since she recently went through the whole thing.
If it were me, I would carefully consider my options and speak with the experts before making a decision. One thing you may want to consider is that you will probably end up having the other side out at some point. The question is do you want to go throug everything now or do you want to wait and do the completion/RAI and med adjustment later? Because I am a worrier, I would probably remove the other side and sooner rather than later so that I wouldn't have to go through the 2nd surgery after my incision had completely healed and the scar was no longer noticeable. But I can understand wanting to avoid surgery if at all possible. 
Let us know what you decide and, again, I am so sorry you have to go through this. Hang in there.


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## catherinelyn (Jul 17, 2013)

Thanks Velcro And Eliza,

I'm definitely leaning toward completion surgery. I plan on explaining my concerns in detail to my endocrinologist and hopefully can get a commitment from him ahead of time regarding frequency of monitoring and medicating to keep my Free T3/4 at 75% of range and also that he be willing to prescribe cytomel or desiccated thyroid replacement if needed. He's pretty traditional by the book but young, smart and a nice guy so I think he my accommodate my wishes on this one.

Oh and good point about the scar Eliza, I already have a scar on my neck from torticollas surgery when I was 3, now I have the one from my PT. Surgeon says I can have up to 12 weeks for the completion (6-8 is optimal). Anything beyond that I guess would mean another scar!


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## KeepOnGoing (Jan 2, 2013)

My sympathies - I was in exactly the same position about a year ago. Being a worrier, I had the other half of my thyroid removed, which was my oncologist's advice. It was clear, but I feel much more confident going forward. I didn't have hashis, though. They decided RAI wasn't needed.

I felt really poorly between the two operations, which might well have been partly down to stress, but my thyroid results were getting worse. Since having the rest out, it's taken a while to feel really good, but I think I probably feel better now than I have done in years!

Making the decision was quite the worse part of it. I think it's a really good idea to go with a list of questions - I presume they will be seeking to suppress your TSH?

Thinking of you...


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## jenny v (May 6, 2012)

Well, that news stinks! I'm sorry you're having to deal with this kind of decision.

It sounds like the half they left in looked consistent with having Hashi's, correct? I wonder if, in the long run, that will make it more difficult to get your meds adjusted so that you feel good? I have my whole thyroid but I do have Hashi's and it's been a struggle over the last two years to try and get my levels stable. The darn thing keeps cycling back and forth between hypo and hyper due to the Hashi's.

Definitely take a list of questions to your endo and talk it out, he/she may have good advice that can help you make a decision.


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## Andros (Aug 26, 2009)

catherinelyn said:


> So my surgeon called me last night and the news is not so good---it was papillary cancer, 1.1 cm, fully encapsulated with clear lymph nodes. He made a point of saying "the cancer is gone" but the rest of the thyroid, although not really enlarged, does show evidence of inflammation consistent with Hashi's.
> 
> Now I have another critical decision to make. He said my endocrinologist will be calling me to discuss. Basically since the cancer was so small and with no lymph nodes involved we could be done with I guess ongoing monitoring. If the endocrinologist wants to do RAI, then I'll need to do the completion surgery first.
> 
> ...


There are many reasons to get it out but the major reason could be "if" your life's circumstances should change and you no longer have insurance or the income to handle this in the future, you would be up the "crik" as they say.'

Give this some serious thought. We are living in very fast changing times; nothing is carved in stone.


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## joplin1975 (Jul 21, 2011)

I'm sorry.

If you go onto the ThyCa site, you'll find lots of people who are going with less aggressive treatment and opting to leave the other side in if it is encapsulated and no nodal involvement.

My opinion? If you have Hashi's, regulating your meds and feeling better will be more of a challenge with the other side left it. I'd lean toward removing the other side.


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## megan (Jul 11, 2013)

I had a TT on 8/6, and when my pathology came back last week, it showed no cancer, but, like yours, it showed inflammation/Hashi's. This was the first time I had ever been told I have Hashi's. I am curious about how the Hashi's diagnosis will affect my life and am looking forward to getting more information on Monday when I see my endo for the first time post-surgery.
I was able to start replacement meds last week, and I can already tell that my energy levels are up. I hope you can get some good advice from your doctors and come to a decision that you feel comfortable with!


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## catherinelyn (Jul 17, 2013)

Thanks everyone for your responses, you've made several good points. I just got back from my post op visit with the sugeon's NP. It seems both my surgeon and endocrinologist are on vacation this week, but they have been communicating and endo is recommending completion surgery with RAI. NP is pretty sure he will keep me on meds for the RAI and do the thyrogen shots. Endo will call me when he returns.

Completion surgery is scheduled for 10/1/13.


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## KarenB (Jul 19, 2013)

catherinelyn, I'll weigh in for what it's worth, even though it appears you have come to some sort of resolution about the whole thing!

I had a PT on 15 July, and pathology came back positive for follicular cancer - I had a 3cm nodule that turned out to not be encapsulated. I had a REALLY hard time after the first surgery - the 3 to 4 days directly after were horrible. When I was told I had to have the the second surgery I was devastated, thinking I would have to go through the whole thing again.

The second surgery, however, was a walk in the park in comparison. I feel like it hardly set me back at all. I woke up from the anesthesia hungry! The recovery since then has been a bit up and down, but the impact of the surgery was not so bad.

I am glad you have decided to take the whole thing out. From what I have read, half a thyroid with complications is very, very hard to manage with meds etc, and the cancer question mark would always be hanging.

Best of luck to you - I hope you keep us posted! I am sure you will be fine xx


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## catherinelyn (Jul 17, 2013)

Thanks Karen,

My recovery from the PT was not so bad, I just still have the same fatigue I had before hand, but I'm just 2 weeks post op as of yesterday. Wondering if I could be starting to go hypo, don't get labs for 2 more weeks.

As far as further intervention, I finally got to speak to my endocrinologist and I am feeling more comfortable with the completion surgery. RAI will likely be optional according to him, but I think he'd like for me do it. From reading other people's accounts who were symptomatic with Hashi's it seems my best chance for resolution, if it is the Hashi's that is causing or contributing to my fatigue, is to get as much tissue out of there as possible so the antibodies don't have anything to attack.


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