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Any Papillary cancer people out there?

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Old 01-13-2006, 05:05 PM   #1
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southwest1975 HB User
Any Papillary cancer people out there?

So here I am again, it seems that most everyone here has Hypo or Hashi's. Initially I was diagnosed with Hashi's but 4 wekks later I had my thyroid taken out due to papillary carcinoma. So now my doc has me on.137 mcg of levothyroxine. I feel good except I've gained some wait but I can live with now in March I will go back to have repeat scans to make sure the cancer that I still have has not spread (very confident that it hasn't) Any way My endo says that after you've had your thyroid removed yu need to be hyper to prevent your body from producing more something or tsh level is .184 and when I first went to my endo last year in Jan. it was 3.2...So is there anyone else out there like me??
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Old 01-13-2006, 08:49 PM   #2
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Gardener24 HB User
Re: Any Papillary cancer people out there?


I just had my thyroid removed in September with a follicular neoplasm diagnosis, which turned out to be papillary cancer in both lobes. I too was diagnosed with Hashi's just before this. After completing RAI treatment about a month later, I was started on a 150 dose of Synthroid. At my six-week check, I was at a .35 TSH level. My endo's having me wait an additional six weeks and then having more bloodwork before making any change in my meds to get me to the low .1 TSH that they use for thryoid cell growth suppression (in case there's any left).

I have not had any weight gain, but I'm cold a lot, starting to have numerous joint aches, and skipped my period for the first time since having my last child years ago.

Old 01-14-2006, 02:57 PM   #3
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Re: Any Papillary cancer people out there?

Yep, I had papillary. I go for scans in March too---here's hoping we're both free and clear!

I never had hashi or hypo that I know of---just the nodule---FNA was positive, so at least I only had to have 1 surgery.

My TSH is kept suppressed at .02-to prevent recurrence--I feel okay. My weight is pretty much normal---as long as I watch what I eat and exercise---I had gained a couple of pounds initially after being hypo for a very long time after RAI. Then it came off when I was more effectively medicated.

Not looking forward to scans in March, so I'm thinking good thoughts!

Old 01-14-2006, 07:16 PM   #4
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mollyann HB User
Re: Any Papillary cancer people out there?

I'm new here also. I was diagnosed with Hashi's and papillary cancer in early November. They left a small part of one lobe. My TSH is at 1.46 at the moment. From reading this board, I am right in assuming I want that to go down to .1-.3?? At 1.46 I'm still feeling awful with exhaustion, fatigue and aches and what you guys call bone pain. My Synthroid dosage is at .88. I have more bloodwork in 3 weeks. I must make a list of questions for my doctor.
Can you tell me why it's important to know about the T3 and T4? I don't quite understand that.
I am baffled by the seeminging non concern of my doctor about the pap. cancer. Even with a 10 year survival rate of 99%, I haven't been lucky in one of these areas yet. None of us who have been diagnosed with cancer have been lucky honestly, have we?
Plus I just read a new paper issued in December that states papillary cancer is more aggressively metatastic than previously thought and that it's recurrance rate is higher with a higher fatality rate. Anyone else read this? Again, that isn't great news she says sarcastically.

Last edited by mollyann; 01-14-2006 at 07:17 PM.

Old 03-07-2006, 07:15 PM   #5
Join Date: Jan 2006
Location: austin, tx
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melisar10 HB User
Re: Any Papillary cancer people out there?

I had a total thyroidectomy in feb 94 and was diagnosed with papillary cancer. I have had radiation treatments 4 times in these past 12 years and they now think it MAY have moved to some lymph nodes in the neck area. I had my thyrogen injections yesterday and today and then my radioactive iodine pill tomorrow, wbs scand friday and dr appt friday. They will tell me if I am to have surgery at this point or what as the radiation has not killed off these residual cells they keep seeing these past 12 years. I will just see what happens. It gets frustrating. Hang in there y'all

Old 03-08-2006, 04:01 AM   #6
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emmymm HB User
Re: Any Papillary cancer people out there?

I had a TT on 2/21/06 with a 1 cm papillary tumor, nothing in the nodes. I am currently on 125mcg of synthroid. I asked to prepare for my RAI ablation trreatment with Thyrogen so I don't have to live hypo for 6 weeks. I am feeling good, I don't think I had the "hypo slump" after TT because my doc started me on 100mcg of synthroid about 8 weeks before surgery , because I was slightly hypo. I think it helped to have that 100mcg in my system.
This message board has been so helpful! Do any of you know of any other boards on the web that have a papillary cancer category? This is the most active Thyroid site I have come across. I found a couple, but posts were old and no activity currently.
Good luck to all of us! And remember when the going gets tough, we have (had) the most curable human cancer there is.
ps . my incision looks GREAT....but the swelling beneath seems to be taking forever!!! Doc said could be June before it is flat? What was your experience?

Old 03-20-2006, 05:03 PM   #7
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RomyD HB User
Re: Any Papillary cancer people out there?

I just had a TT on 3/6 and posted another new post in the boards (haven't had much of a view/response success rate). Anyhow, I am glad to have happened upon this post.

I'm not really sure what to expect in the upcoming months...I have an appt with my endocrin on Wednesday, 3/22 and I really don't know what to expect. My path report says that the cancer was isolated to my left node and didn't spread to my lymph nodes. Does this mean that I may not need RAI?

Sooo happy to have found HealthBoards...for a person dealing with PCOS and Papillary, it helps to talk to other people going through the same things!!


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