# More surgery and a scary diagnosis



## kuponut (Oct 24, 2013)

As some or most of you know I had a PT on the 4th to biopsy a growing cold goiter on my left lobe. I am healing along nicely but, I last Tuesday I received the life altering call no soul ever wants to encounter on their journey on this planet. I come to learn that not only do I have the common and treatable papillary carcinoma but the rare aggressive insular thyroid carcinoma. Naturally, they are going to take the rest of the thyroid and they're taking the lymph nodes too.

I'd be lying to myself and others if I didn't admit my fear and rage. My own mortality suddenly became a question in my mind. I'm just angry that my body rebelled against me.


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## joplin1975 (Jul 21, 2011)

Oh dear...I'm so sorry.

It sounds like early diagnosis is key and I think you are in the early stages?

Hang in there...and keep us updated.


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## Andros (Aug 26, 2009)

kuponut said:


> As some or most of you know I had a PT on the 4th to biopsy a growing cold goiter on my left lobe. I am healing along nicely but, I last Tuesday I received the life altering call no soul ever wants to encounter on their journey on this planet. I come to learn that not only do I have the common and treatable papillary carcinoma but the rare aggressive insular thyroid carcinoma. Naturally, they are going to take the rest of the thyroid and they're taking the lymph nodes too.
> 
> I'd be lying to myself and others if I didn't admit my fear and rage. My own mortality suddenly became a question in my mind. I'm just angry that my body rebelled against me.





kuponut said:


> As some or most of you know I had a PT on the 4th to biopsy a growing cold goiter on my left lobe. I am healing along nicely but, I last Tuesday I received the life altering call no soul ever wants to encounter on their journey on this planet. I come to learn that not only do I have the common and treatable papillary carcinoma but the rare aggressive insular thyroid carcinoma. Naturally, they are going to take the rest of the thyroid and they're taking the lymph nodes too.
> 
> I'd be lying to myself and others if I didn't admit my fear and rage. My own mortality suddenly became a question in my mind. I'm just angry that my body rebelled against me.


Oh, my..........................so so sorry to hear this. Hopefully you are in the early stages. This may be a rough road right now but I believe that you will come through like a shiny new penny!

As you know, we have many cancer survivors on this board and I am positive they will rally and offer all the support and hugs you could need.


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## Octavia (Aug 1, 2011)

Sending hugs and positive thoughts your way...

It sounds like you have a good plan to move forward. In the meantime, is it possible to have your tissue sent for a second opinion, just to be doubly sure?


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## LaRue (Dec 17, 2013)

I'm only new to this forum and know next to nothing but wanted to send you positive affirmations that all will turn out well for you. I can't imagine how you must be feeling hearing that news and hope you take comfort in the fact that you have a place (here) to share your good and bad days with people who understand some of what you will have to face. I think its absolutely normal and healthy to go through the gamut of emotions - anger, sadness, fear - so that you reach a point where once they are purged, you can concentrate on coming out the other side cancer free. Facing your mortality is a very scary thing but on the bright side, can encourage us to reassess what is truly important and to treasure each day. But of course, it takes time to get to this point. Goodness, you have every right to be angry and mad at your body.

In 2003 I had a laparotomy for endometrial cysts growing on my bladder and bowel. The epidural they gave me for post operative pain relief became infected with golden staph and an abscess formed on my spinal cord culminating in meningitis They told me there was a high possibility I could die or be paralyzed but I distinctly remember thinking 'NO, NO, NO' amongst the terrible pain I was experiencing and incredibly, after 6 weeks in hospital and massive doses of antibiotics delivered through a picc line, I survived and could walk. I just kept thinking 'no, I'm not going to die' and praying like crazy. To this day I think doing both those things saved my life. I didn't mean to make this all about me but merely wanted to share something positive in that when your back is against the wall, the mind can do incredible things to fix the body.

Hold on tight and God bless.


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## kuponut (Oct 24, 2013)

Octavia said:


> Sending hugs and positive thoughts your way...
> 
> It sounds like you have a good plan to move forward. In the meantime, is it possible to have your tissue sent for a second opinion, just to be doubly sure?


I forgot to mention! I'm going for my second opinion at University of Penn Medicine in Philadelphia on the 30th.


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## joplin1975 (Jul 21, 2011)

Good idea.

Listen, I do some pro-bono fundraising work with ITOG (International Thyroid Oncology Group, see website here: http://itog.org/). They deal with the "most challenging thyroid cancers" and are an international group of doctors, scientists, and others -- all of whom are considered top-notch in their fields. If you can get in with one of those docs and/or have your case reviewed by them, please do so. (I don't know the doctors personally, I only work with some of the administration).


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## kuponut (Oct 24, 2013)

LaRue said:


> I'm only new to this forum and know next to nothing but wanted to send you positive affirmations that all will turn out well for you. I can't imagine how you must be feeling hearing that news and hope you take comfort in the fact that you have a place (here) to share your good and bad days with people who understand some of what you will have to face. I think its absolutely normal and healthy to go through the gamut of emotions - anger, sadness, fear - so that you reach a point where once they are purged, you can concentrate on coming out the other side cancer free. Facing your mortality is a very scary thing but on the bright side, can encourage us to reassess what is truly important and to treasure each day. But of course, it takes time to get to this point. Goodness, you have every right to be angry and mad at your body.
> 
> In 2003 I had a laparotomy for endometrial cysts growing on my bladder and bowl. The epidural they gave me for post operative pain relief became infected with golden staph and an abscess formed on my spinal cord culminating in meningitis They told me there was a high possibility I could die or be paralyzed but I distinctly remember thinking 'NO, NO, NO' amongst the terrible pain I was experiencing and incredibly, after 6 weeks in hospital and massive doses of antibiotics delivered through a picc line, I survived and could walk. I just kept thinking 'no, I'm not going to die' and praying like crazy. To this day I think doing both those things saved my life. I didn't mean to make this all about me but merely wanted to share something positive in that when your back is against the wall, the mind can do incredible things to fix the body.
> 
> Hold on tight and God bless.


Oh my! You certainly have been through the ringer! I do believe having a strong will and spirit keeps the body strong. I intend to keep strong, start a blog to raise awareness for poorly differentiated thyroid cancers, and I'll be damned if I allow this to define me.


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## Andros (Aug 26, 2009)

kuponut said:


> Oh my! You certainly have been through the ringer! I do believe having a strong will and spirit keeps the body strong. I intend to keep strong, start a blog to raise awareness for poorly differentiated thyroid cancers, and I'll be damned if I allow this to define me.


That's the spirit and we are on your team! Fight with all your might!


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## kuponut (Oct 24, 2013)

Quick update: My second opinion appointment has been moved to this Friday! Woo hoo!


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## Ginav (Jun 7, 2013)

I am told Penn Medicine is a phenomenal place to go. Good luck!


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## jenny v (May 6, 2012)

Good luck and keep us updated. With your great attitude, I have no doubt your cancer has met it's match and you'll kick its butt!


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## jackpot13 (Jul 10, 2011)

I am so very sorry to hear this. It seems to have been found early so that's a good thing not to mention your great attitude. Thinking positive goes a long way. Thoughts and prayers for a cancer free speedy recovery. :hugs:


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## kuponut (Oct 24, 2013)

So my next surgery has been scheduled for the 22nd of January and I've been referred to an oncologist. Hopefully it'll only be a one time visit. They might do chemo but hopefully not.


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## joplin1975 (Jul 21, 2011)

How did the second opinion/Penn Med appointment go? Do you feel better?


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## Andros (Aug 26, 2009)

Do know that you are in our prayers, thoughts and hearts through this difficult time!


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## kuponut (Oct 24, 2013)

The second opinion is the one who booked the surgery and referred me to an oncologist. I'm scared and sad. Especially because they told me the reoccurring rate is higher with insular.


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## Octavia (Aug 1, 2011)

kuponut said:


> So my next surgery has been scheduled for the 22nd of January and I've been referred to an oncologist. Hopefully it'll only be a one time visit. They might do chemo but hopefully not.


Ideally, you should see the oncologist BEFORE your second surgery so you have a plan in place for immediately afterwards. For example, if the plan is for you to get a strong RAI treatment to kill off any remaining thyroid cells, then you'll need delay starting your thyroid replacement until after the RAI and body scan (which is done a few days after the RAI).

It's not alarming, but i'm a little surprised they're waiting another month to do your second surgery.


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## kuponut (Oct 24, 2013)

It was the soonest they could get me in. Ideally I'd rather it be sooner. My oncologist appointment is on the second. Maybe she can urge the surgeon to push it forward.


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## kuponut (Oct 24, 2013)

Sorry posted twice


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## Airmid (Apr 24, 2013)

I hope that you have received some kind of news and some good/better news at that.



kuponut said:


> Oh my! You certainly have been through the ringer! I do believe having a strong will and spirit keeps the body strong. I intend to keep strong, start a blog to raise awareness for poorly differentiated thyroid cancers, and I'll be damned if I allow this to define me.


This makes me think of what my new doctor said to me today "I always tell people that if they had to get one type of cancer, you want thyroid". I wanted to slap her upside the head. Not only are there different types of thyroid cancer, including a rare but one worst kinds of cancer, there are different sub-types for each and all have different risk factors and a mortality rate. I wanted to tell her not to belittle someone else's experience just because she thought of any cancer as "harmless"

I can't even imagine what you are going through at this point in time. I remember my anger at that Endo that said to leave in part of my thyroid if they could get clean edges because I was in my 20's at the time, then finding out after surgery I had a more aggressive form of Papillary cancer and my whole thyroid should have been removed. And my anger at the VA who refuses to do anything even though my thyroid has suspicious nodules on it and has for some time now and there's no guarantee I'll get a more easily treatable cancer as my risk rate goes up.

I would be so angry right now at this news, and no one here would blame you if you were, along with grieving. Cancer is never a word easy to hear. We're here for you. You're in my thoughts and Prayers.


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## kuponut (Oct 24, 2013)

Hey everyone, I'm sorry I haven't updated in awhile. My surgery got RESCHEDULED ten count em TEN DAYS before the big dance. They decided to biopsy the lymph nodes behind all the scar tissue where my left lobe lived. That was slightly infuriating as the nurse said that I "insisted on lidocaine." Excuse me nursey, let me stab you in the next with a needle and we'll see how chipper YOU are . without any anesthetic, So now i'm just waiting to hear back from the doctor about everything.

Also side note:: When did your surgery scars stop hurting at the touch? I mine STING to the touch. Ow ow ow!

Oh, and Airmid, my doctor said the same thing to me before sending me for my second opinion. As we all know, there's no such thing as a GOOD kind of cancer.


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## joplin1975 (Jul 21, 2011)

Well, dang! That's frustrating!!!

The stinging is likely your nerves repairing themselves. I got a neuroma on my scar which was crazy ouchy. So, it's recommended that, as long as the incision is closed and healing nicely, that you try to do scar massages. It hurts like heck with the nerve stuff, but it gets better with time.

Hoping to hear a super positive update from you next time!!!


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## kuponut (Oct 24, 2013)

Funny enough, after this post they called me. Surgery is scheduled for February 18th, a bittersweet moment indeed. The bitter being fear, and the sweet being one step closer to it all being over! I raise my sword ready for battle, hear my war cry.


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## gelf (Jun 20, 2011)

kuponut said:


> Also side note:: When did your surgery scars stop hurting at the touch? I mine STING to the touch. Ow ow ow!


i had a TT on 7/26/2013 (along with a right side mastectomy). as soon as the surgical tape came off and I could tolerate it, i rubbed lotion onto it several times a day. i also massaged my neck muscles, which helped with the stiffness. i saw an OT specialist for lymphadema massage (i had arm pain after surgery that didn't go away for 3 months). she massaged my thyroid surgery scar too. so at 6 1/2 months, i still massage my thyroid scar on occassion (as well as my mastecomy scar). the thyroid one is almost not noticable (mastectomy is another story) -- which i consider good as i tend to keloid easily.


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