Thursday, October 20, 2011
Wednesday, October 19, 2011
Sunday, October 16, 2011
2011 Thyroid Cancer Survivors' Conference - Day 3
I learned a lot at the conference. But I am mentally exhausted.
I was hoping it was going to be a 'light' day, then I walked into a Pediactric ThyCa session. The ENT/speaker said he had worked on a patient as young as six years old. 6! The good news for young ThyCans is their prognosis is way better than it is for adults, their cancer (if it is papillary) responds to RAI, even in their lymph nodes, and they also seem to do better when going 'hypo' in preparation for a WBS.
Another session I attended was about TSH suppression. I asked the Endo/Speaker how fast my TSH would rise if/when I forget to take my afternoon T3 pill. I thought it would take a while, esp since I am so suppressed. She said it could rise relatively quickly, since I would be missing 30% of my medication for that day. Well, that is not good, especially since I seem to forget my second T3 pill at least once every other week.
It was a lot to absorb in three days, but I am so glad I was able to attend the conference this year. The 2012 ThyCa conference will be in Chicago, October 19-21, so mark your calendars!
I was hoping it was going to be a 'light' day, then I walked into a Pediactric ThyCa session. The ENT/speaker said he had worked on a patient as young as six years old. 6! The good news for young ThyCans is their prognosis is way better than it is for adults, their cancer (if it is papillary) responds to RAI, even in their lymph nodes, and they also seem to do better when going 'hypo' in preparation for a WBS.
Another session I attended was about TSH suppression. I asked the Endo/Speaker how fast my TSH would rise if/when I forget to take my afternoon T3 pill. I thought it would take a while, esp since I am so suppressed. She said it could rise relatively quickly, since I would be missing 30% of my medication for that day. Well, that is not good, especially since I seem to forget my second T3 pill at least once every other week.
It was a lot to absorb in three days, but I am so glad I was able to attend the conference this year. The 2012 ThyCa conference will be in Chicago, October 19-21, so mark your calendars!
2011 Thyroid Cancer Survivors' Conference - Day 2
Exhausted. So much information to take in, again. I appreciate that a lot of the speakers either had thyroid cancer or thyroid disease.
Because there are no sessions specifically for Hurthle cell carcinoma, I tried to take good notes whenever it did come up in a session. Interesting that there seemed to be a disagreement as to whether or not HCC falls under Follicular ThyCa, or if it is a separate disease. I think I did get a better idea as to why my ENDO categorizes me as 'low risk' - they categorize by as many features as possible, so the fact that my main tumor was 3.2cm HCC wasn't the main determinant. They also take into account metastasis, vascular invasion, and RAI uptake outside of thyroid bed, among other things.
I stayed for part of a session on coping with and the gifts of thyroid cancer. One lady said that she 'didn't want to be anyone's hero because of her cancer, she just didn't want to have cancer'. Wow. I hate to say this, but she is living in denial. The sooner she can accept her cancer, the sooner she can move on with her life. She has cancer, it cannot be taken back; you cannot erase every second up to the point just before you were diagnosed. I think the first year is the hardest because you just don't know what to expect. But you will get through it, we all do. But you have to be strong. You need to learn about your disease, know what your options are, be your own advocate. No one else will do this for you.
The program is shorter tomorrow, but I just want to go home. Not sure if I'll stay for the last Roundtable session or not. Since my right arm is still a bit sore, even with the pain killers, I think I better skip trying to do some bouldering at Hangar 18. Maybe next time I'm in the area, and not so mentally overwhelmed.
Because there are no sessions specifically for Hurthle cell carcinoma, I tried to take good notes whenever it did come up in a session. Interesting that there seemed to be a disagreement as to whether or not HCC falls under Follicular ThyCa, or if it is a separate disease. I think I did get a better idea as to why my ENDO categorizes me as 'low risk' - they categorize by as many features as possible, so the fact that my main tumor was 3.2cm HCC wasn't the main determinant. They also take into account metastasis, vascular invasion, and RAI uptake outside of thyroid bed, among other things.
I stayed for part of a session on coping with and the gifts of thyroid cancer. One lady said that she 'didn't want to be anyone's hero because of her cancer, she just didn't want to have cancer'. Wow. I hate to say this, but she is living in denial. The sooner she can accept her cancer, the sooner she can move on with her life. She has cancer, it cannot be taken back; you cannot erase every second up to the point just before you were diagnosed. I think the first year is the hardest because you just don't know what to expect. But you will get through it, we all do. But you have to be strong. You need to learn about your disease, know what your options are, be your own advocate. No one else will do this for you.
The program is shorter tomorrow, but I just want to go home. Not sure if I'll stay for the last Roundtable session or not. Since my right arm is still a bit sore, even with the pain killers, I think I better skip trying to do some bouldering at Hangar 18. Maybe next time I'm in the area, and not so mentally overwhelmed.
Friday, October 14, 2011
How does my neck look? 10/14/11
I haven't posted a shot of my neck in months, it seems. I've had too many other issues that I've been worried about lately - my knees and right arm. I am still get that weird tugging feeling along my scar. I really wonder if my arm/shoulder pain has anything to do with it.
Anyway, here is my neck 17 months after my second/completion thyroid surgery. I have been looking at a lot of scars today. Some are so faint, they are hard to see. Some are so well disguised by the creases in their necks, much like mine. Some are still red, fresh scars from just a few months ago. Our scars start out looking scary, horrible, impossible to heal. I think mine looked very Frankenstein-ish especially after the second surgery, the way the blood dried under the derma bond tape. But it tells the world that we are survivors.
As for my other issues....I saw my PC doc on Tuesday. She said 'you have a rotator cuff injury'. Per her recommendation, I am taking 500mg of Naproxen twice daily, for 3-5 days to see if the pain goes away. I am on day three, and my right deltoid/arm still hurts. The shoulder/supraspinatus pain is mostly gone. I am awaiting a call to schedule my first (of my 8 remaining, for the year) PT session for my arm. My knees have been doing pretty good. Not perfect, but a lot less pain for both. I tried jogging/walking on Wednesday. My right knee still felt a bit uncomfortable during the whole thing. But I have not had too many issues going up/down the stairs at the gym. I just don't know if this is a result of the Naproxen I am on, or if my knees are really just that much better. Still hoping things will clear up, for my knees and arm, soon. I really miss running and climbing.
As for my other issues....I saw my PC doc on Tuesday. She said 'you have a rotator cuff injury'. Per her recommendation, I am taking 500mg of Naproxen twice daily, for 3-5 days to see if the pain goes away. I am on day three, and my right deltoid/arm still hurts. The shoulder/supraspinatus pain is mostly gone. I am awaiting a call to schedule my first (of my 8 remaining, for the year) PT session for my arm. My knees have been doing pretty good. Not perfect, but a lot less pain for both. I tried jogging/walking on Wednesday. My right knee still felt a bit uncomfortable during the whole thing. But I have not had too many issues going up/down the stairs at the gym. I just don't know if this is a result of the Naproxen I am on, or if my knees are really just that much better. Still hoping things will clear up, for my knees and arm, soon. I really miss running and climbing.
2011 Thyroid Cancer Survivors' Conference - Day 1
So I didn't exactly wake up as early as I had hoped for the drive up to LA for the conference, but I made it in time for the first session. It was an 'Open mike', where you could meet other ThyCans and hear their stories. I was surprised at the number of Medullary thyroid cancer survivors in my session - there were four. I have never met a ThyCan with anything other than Papillary or Follicular/Hurthle cell ThyCa, so I was a bit overwhelmed since I don't know anything about it. One guy had Medullary and Hurthle cell. There was also a 38 year survivor, and another guy, from Portugal, with Hurthle cell carcinoma. There was a married couple that were both diagnosed this year with ThyCa. They grew up in a area close to I think a rocket testing facility here in California, so they wonder if their cases are environmental, not hereditary.
During the lunch break I ran into a couple of members from my support group, so I caught up with them as we picked up our box lunches. Then I found two more members in the lunch session I went to. I have to say that some of the session titles are a bit misleading. Like the Advances in Research session was presented by an Oncologist that does trials for differentiated (Pap/Foll/hurthle) and medullary thyca, when I thought it was going to be about general research advances. It was very enlightening to hear about the clinical side of thyroid drug trials which are generally for those that can no longer be treated by RAI, thyroid hormone suppression, or surgery. I hope I never get to that stage, but if I do, I think I will seek out the speaker, who works at PENN.
There was so much that was covered by each speaker, I don't know if any of my notes make any sense at this point.
I went to dinner with one of the members from my support group. We started our journeys around the same time last year. She attended last year's conference. She told me, during the lunch session on Familial Pap/Foll ThyCa, that Hurthle cell is considered to be progression from Papillary ThyCa. The leader of that session said that Anaplastic ThyCa is the result from untreated Pap ThyCa. Wow. I had no idea how these were related. Anyway, we took a trolley tour bus down to Manhattan Beach for dinner, ending up at a restaurant called LA Food Show. Not bad.
Tomorrow, I am looking forward to the session on Alternative treatments.
During the lunch break I ran into a couple of members from my support group, so I caught up with them as we picked up our box lunches. Then I found two more members in the lunch session I went to. I have to say that some of the session titles are a bit misleading. Like the Advances in Research session was presented by an Oncologist that does trials for differentiated (Pap/Foll/hurthle) and medullary thyca, when I thought it was going to be about general research advances. It was very enlightening to hear about the clinical side of thyroid drug trials which are generally for those that can no longer be treated by RAI, thyroid hormone suppression, or surgery. I hope I never get to that stage, but if I do, I think I will seek out the speaker, who works at PENN.
There was so much that was covered by each speaker, I don't know if any of my notes make any sense at this point.
I went to dinner with one of the members from my support group. We started our journeys around the same time last year. She attended last year's conference. She told me, during the lunch session on Familial Pap/Foll ThyCa, that Hurthle cell is considered to be progression from Papillary ThyCa. The leader of that session said that Anaplastic ThyCa is the result from untreated Pap ThyCa. Wow. I had no idea how these were related. Anyway, we took a trolley tour bus down to Manhattan Beach for dinner, ending up at a restaurant called LA Food Show. Not bad.
Tomorrow, I am looking forward to the session on Alternative treatments.
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