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i was diagnosed with pap thyroid cancer almost 2months ago and am scheduled 2 months from now ... so a total of 4 months

mzdeanx6
Posts: 1
Joined: Sep 2011

from diagnosis to surgery.. is this normal? others i spoke to had theirs out with in a few weeks of the diagnosis. I don't understand why it has to be such a long wait. i was told it's because they think i've had it for some time so they are in no rush to remove it. and since it's papillary they are not concerned.... i am!

amorriso
Posts: 186
Joined: Oct 2010

I think you will find if you read other posts that it seems that our cancer is often not taken seriously by doctors. I was fortunate to have mine TT within a few weeks, but I used a private hospital because of where I work.

You may get some suggestions from others to push for an earlier date, and to keep asking or seeing if you can get in on a cancellation. But do make sure you have a good surgeon.

Make sure you ask all the questions you can - and do keep in touch on this forum if you need more answers.

All the best

MarinMark
Posts: 139
Joined: Aug 2011

You probably have had tpc for years, but why wait to have a tot thyroidectomy ? Can't hurt to do it asap.

teamwink
Posts: 97
Joined: May 2011

I feel like our cancer is usually not seen as negatively as others, but like you, I had to wait also. I know the waiting just sucks and it is very scary for you. Hang in there - we're all here for you!

MarinMark
Posts: 139
Joined: Aug 2011

teamwink is right. These cancer docs deal with fast growing tumors and give those priority. PTC is very slow growing and can be there for years. Handled properly you live a normal life span. The problem seems to be what is '''handled properly''''.

Mccammon5
Posts: 2
Joined: Sep 2011

I was told I had hurthle cells after my needle biopsy in June of this year. After my surgery (july)I was told it wasn't hurthle but papillary cancer. I have been on the "diet" now for six days. I get my first injection at 9am, my second on Tuesday, and I131 on Wednesday. I'm so new at all this.... I didn't realize that every time I get my numbers checked I have to go back on the diet..... I no love the diet!
Katherine

amorriso
Posts: 186
Joined: Oct 2010

What numbers are you talking about? Your blood work? You do not need to be a the diet for regular blood tests for T4 etc.

You DO need to be on the diet before doing your RAI - which if you are getting the thyrogen shots sounds what you are preparing for.

Have you checked the Thyca cookbook for recipes and advice? It makes the diet much easier!

Good luck

Andrea

nasher
Posts: 507
Joined: Apr 2010

yes unfortunately they do not treat thyroid cancer as an OMG lets get it out

doctors have been lead to believe that its a GOOD cancer .

papillary thyroid cancer could have BRAF mutation and if so it would end up being a cancer that comes back.. they normally don't test for BRAF mutation.

the biggest problem is that since the surgeons/ENT doctors do not get to see people in Hypo Hell (if they take you off thyroid replacement for scans treatment) they do not understand that 1 pill a day for the rest of your life can actually be a major headache.

they don't see the complications and other issues that can crop up months to years later.

In my case the 5th of December 2009 they found a LARGE goiter in my neck did a FNA in mid January 2010 and scheduled surgery February 22 2010 since it was pushing on my windpipe and making it had to breathe or they would have waited 6+ months. they took it out found 2 types of thyroid cancer and 2 weeks later they took the rest of my thyroid out.

ok some numbers now

for all types of cancer estimated in USA 2011
new cases 1,596,670
deaths 571,950

thyroid cancer USA 2011 estimated
new cases 48,020 (0.3% of all types)
deaths 1,740 (0.3% of all types)

the 5 year survivability rate for thryod cancer is 97%
they don't realize there is about a 30% chance for re-occurrence

since we have such small numbers compared to other cancers the doctors tend not to realize how much of a pain it is.

yes papillary thyroid cancer is NORMALLY slow growing unless its BRAF mutation.

@ Mccammon5 - yes the LID sucks.... and you should only have to go on it once a year for the first few years and then once every few years after that. oh and be glad you got the thyrogen shots.

veronica57
Posts: 98
Joined: May 2010

Don't wait another two months. I was diagnosed in 2009, with Pap Thyca, stage 4. I had had it for quite some time also and didn't know it. By the time they diagnosed me, the cancer had spread to lungs. I was already in the hospital when I was diagnosed and they wanted to do the surgery right away. But I had so much going on and then this, I couldn't go through with it. My surgeon told me, I could go home and come back within two weeks but no longer. So, I did that. They removed the thyroid and my lymph glands. However, he left a nodule that was too tedious to get off, next to my vocal cords.

I was supposed to get iodine treatments starting the week after coming home. I didn't get my first treatment until four months later. Eventually, I found out that the next treatment they gave me was not really a treatment. Instead, it was a test pill. They finally told me, I wasn't uptaking the iodine. After insistence from a thoraic surgeon that did a lung biopsy on me, my onco finally put me on the chemo pill.(nexevar) It didn't help me. Then they put me on intravenous chemo(adriamycin)in Dec. of 2010. I took my last round in June of this year. Now, they're telling me, the cancer is stable in my lungs since Aug. 3rd. but there's nothing else they can do for me. I have lost over 100 lbs. and is still losing weight. I wrote to thyca.com yesterday, and they gave me couple of places to call or write to. I am at my wits end, and fearing that I will never get rid of this cancer as they say.

Keep after them for an earlier date. If necessary, start over now and go to someone else. I wish you the best.

Veronica

JJ_2011's picture
JJ_2011
Posts: 14
Joined: Feb 2011

I took a few weeks to interview a few different surgeons here in Boston before deciding on one that I felt comfortable with. Even after having a firm date in the calendar the surgeon had to cancel due to a death in the family. All in all it was nearly 7-8 weeks after the FNA results were shared with me. Initially they did suggest a date that was a month later. I know a lot of the scheduling has to do with other patients and tending to those who may have a more critical need (based upon size, FNA results, location, and etc.)

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