# Found my way back here :)



## Abcdefg (Mar 16, 2012)

It's been an eventful year. I'm not sure when I last logged in...anywho, a few updates:

Last Oct, I had a major open surgery to remove kidney cancer. I don't recommend this!!! Ouch. Took me 5 months to feel better, without pain or spasms. They took out half my kidney, and filled the defect with some kind of surgical mesh. I still get side pain if I lean the wrong way or drive. Last CT in May for checkup was clear.

In June, I had an MRI. It showed what we thought was a fibroademoma in left breast as Birads 4c. That means high probability for cancer. I had a lumpectomy June 27th. Turned out to be a Phylloides tumor. Very rare, aggressive, no treatments besides surgery. We had bad margins, with tumor cells on 3 sides. My surgeon claims going back in is a waste of time, so she's chosen to ignore it. My GP disagreed, and referred me to another specialist for another opinion...8 week wait as of today. Ugh. That tumor could grow back in the meantime.

On the Thyca front....RECURRENCE! I once again have a tumor in my sternum. It's grown significantly since Jan when I had the last ultrasound (prior toAug 7th). The radiologist recommended a WBS, and surgical referral. I saw the surgeon last week, who in turn has ordered a CT of head/neck/chest to be done right after the WBS on Sept 18th. The best part? They made me go HYPO. Omg. This is horrible! I've had Thyrogen twice in the past, was hoping for it this time. No such luck. I've been off my Synthroid for 2 weeks now, and had to go out on short term disability. Who knows how long I'll be off. I can't work this way though. It's like I've got dementia. No kidding! I can't remember anything, get confused, exhausted, muscle aches etc. 23 more days of it? shoot me. I might go tomorrow to have my TSH checked and see if it's high enough to move up the scan.

After we get the results, and squeeze in the CT, it's likely another neck dissection. If he can go in again. This time might require a thoracic surgeon due to the difficult location. And I'm only doing it if it'll help. Not if the tumors will come right back again. I've had 6 surgeries in 2 years (3 neck). I'm about done . No word yet on RAI. They are pretty stingy here with it, and had they treated me 2 years ago, I might not be in this situation.

So to sum up: 2 cancers, 1 borderline, grand total of 3. Scary? UHUH. But I soldier on.


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## jenny v (May 6, 2012)

Good lord, girl, you've had a hell of a year! You're in my thoughts and prayers.


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## Octavia (Aug 1, 2011)

Wow...you've certainly been through a lot. I hope you start getting some good news soon!


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## joplin1975 (Jul 21, 2011)

Oh my word...

I've often wondered how you are doing and it sounds like it has not been fun.

I hope the future gets brighter for you!


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## Andros (Aug 26, 2009)

This "is" very scary!! I am so so sorry to hear of this! Tch!!! You have been through hell and back more than enough times.

Do let us know how the CT scan goes on the 18th.?

To your knowledge, in your lifetime; have you been over exposed to pesticides or anything of that nature?

Sending many hugs and many prayers your way.


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## Abcdefg (Mar 16, 2012)

Hi all . Thanks for the support. It's been kinda lonely. No one in my circle has ever had cancer, so I have no one to talk to.

Nope, no pesticide exposure that I'm aware of. The thyca isn't a mystery: I'm the 4th generation on my dad's side to have it. In fact, 2 of my cousins are being tested for it right now. They both have large nodules and lymph nodes. Goes way back to great grandmother.

Kidney? No idea. And it's the cancer that scares me. There are no effective treatments besides surgery as well. Pretty rare disease too.

Not one of the dr's will order genetic testing. I wish they would, since if we can identify a gene it might help prepare/treat any other cancers that could pop up.


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## Abcdefg (Mar 16, 2012)

Got my WBS results the other day. 2 tumors, and at least 4 lymph nodes. Extreme uptake in 6 areas. Next step is CT next wed, then surgeon on Friday the 12th.

Oh boy. Here we go again


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## jenny v (May 6, 2012)

Oh man, that sucks. Where are the 2 tumors located?


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## Abcdefg (Mar 16, 2012)

Sternal notch (where we've been doing the watch n wait) and slightly north of it. I just looked at my US from Aug, and it's pretty clear on it. Almost butts up against it, but the tech never measured.

The nodes are on right side of neck where original tumor was. The 2 new lumps are on left of sternum.

I guess I forgot to mention they squeezed me in for my WBS Thurs/Fri of last week. My tsh was high enough, so when I called in to book the scan, I mentioned it and the clerk said she had an opening same day. Phew.

Now the anxious wait for surgery.


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## jenny v (May 6, 2012)

I just want to go up there and punch out every one of your medical team! You deserve better care than you've gotten, that's for sure.


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