# Found another tumor, they finally decide I have cancer



## Abcdefg

I saw my new Rad Onc yesterday, and really liked her. She seems pretty proactive. We talked about everything, including my impending gallbladder surgery (full of stones). All was well, and I was on my way out the door, when I asked her to see if my neck US results were in. She had to call over to the hospital where it was done.

Anyway, next thing I know her staff were running around. Doc came out to see me in the waiting room. Turns out, the cancer is back.,

They found a heterogenous mass with vascularity measuring 2.7 x2.4 cm in my Suprclavicular notch. Not a node, a tumor 

Guess that finally convinced them that I indeed have cancer. That mass wasn't there in Oct at the last US, and it's likely the tissue that was picked up on the WBS in Dec.
The last line on the US report says " Findings concerning for metastatic focus. Further investigation strongly recommended". Guess that doesn't leave room for them to blow it off this time.
I'm now waiting for an FNA and surgical consult. Still no word about RAI though.


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## joplin1975

Oy...
I'm glad you are finally getting treatment, but I'm sorry for the news.


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## Abcdefg

Thanks Joplin. I wasn't too shocked actually, because I was watching while they scanned the area. The spot they focused on hurt, and lit up like a xmas tree on Doppler. I've seen that enough to know what it meant.

She also had me go have 18 different blood tests done (7 vials). Because of the gallbladder, they're checking all my liver/kidney/cbc etc. I'm thinking she's worried it's tumors and not stones. They look the same on US.


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## KAYE

I am so sorry to hear your news of a tumor. I am new to the site here and am just learning about the things most here talk about with such good understanding. I pray you will be able to get the right kind of help quickly and be freed of any further tumors in the future.


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## Andros

Abcdefg said:


> I saw my new Rad Onc yesterday, and really liked her. She seems pretty proactive. We talked about everything, including my impending gallbladder surgery (full of stones). All was well, and I was on my way out the door, when I asked her to see if my neck US results were in. She had to call over to the hospital where it was done.
> 
> Anyway, next thing I know her staff were running around. Doc came out to see me in the waiting room. Turns out, the cancer is back.,
> 
> They found a heterogenous mass with vascularity measuring 2.7 x2.4 cm in my Suprclavicular notch. Not a node, a tumor
> 
> Guess that finally convinced them that I indeed have cancer. That mass wasn't there in Oct at the last US, and it's likely the tissue that was picked up on the WBS in Dec.
> The last line on the US report says " Findings concerning for metastatic focus. Further investigation strongly recommended". Guess that doesn't leave room for them to blow it off this time.
> I'm now waiting for an FNA and surgical consult. Still no word about RAI though.


I do believe that even though we did not want to know it, a lot of us did because of the high Thyroglobulin. Sadly.

But, the good news is they now know it and it will be out soon; I hope.

Any word on when surgery will be scheduled?

How are "you" holding up? Do you have friends and family as a good support team? You have been through heck and back.


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## Octavia

FINALLY!!!!! While I'm sorry to hear that this is more definitive now, I'm certainly glad you're finally getting the care you deserve.

Keep us posted. :hugs:


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## jenny v

This news is like a double edged sword. While I'm glad they finally got their acts together and are treating you the way you should have been cared for all along, I'm really sorry they found a new tumor.

How are you holding up? Remember, that all of us here are thinking and praying for you.


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## Abcdefg

I'm ok. Thanks for asking. Weirdly, I'm relieved. I finally know why I'm still super fatigued and why my test results have been sky high. Happy I have a new Rad Onc (my gp got involved and kicked the old one to the curb). His last comment to me (when I said I was in great discomfort with stomach pain and vomiting), was "well I'll put in a referral to a psychiatrist for your tummy ache" *eyeroll*, ****ed me and GP off royally. I had an US on my organs 3 days later which showed gallbladder was littered with stones. 'Splains the pain eh? What an idiot that guy was.

The new doctor had a different criteria on blood levels too. Where he was happy with TSH of 1, she wants me suppressed to <.2. I'm at .94 right now, so she upped me to 175 mcgs, and will add in Cytomel next month if my Free T4 doesn't come up (16 in a range of 23).

I don't feel sad though- which is odd, but I think I'm basically numb to everything now.

No word on surgery yet. I have to wait until after the FNA (which isn't scheduled yet either) before being referred back to the surgeon. I'm hoping there's some way they can know out both surgeries at once though.


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## I DClaire

Bless your heart! I've just waited the longest week of my life for an endoscope ultrasound biopsy of my pancreas.

Maybe I'm the only one but for over three years I've found that virtually nothing that I'm told after any ultrasound proves to be true! I had ultrasounds on my thyroid every 6 months for over two years yet the surgeon said he was shocked at the huge size of my thyroid and that it was "filled" with cysts and nodules. I've got every report ever assembled after each of those ultrasound exams and not one mentions anything about the size of my thyroid or anything else other than old nodules growing and new ones appearing.

Then, last summer, I was told after ultrasound that I had "fatty liver". That, according to a later CT scan and endoscope with attached ultrasound simply isn't true.

Ultrasound had indicated my pancreas was fine - then the latest endoscope/ultrasound indicated it was deformed from birth.

It is painfully slow having to wait for answers - it was over 24 hours ago that I finally found out my pancreas is O.K. and it's just now sinking in.


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## Abcdefg

Biopsy scheduled for Monday. Could have been tomorrow, but I can't get out of my work shift.


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## Octavia

Best wishes!


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## susieintexas

It looks like we are on similar timelines. I was diagnosed with PTC (not follicular though) in May of 2012 and they found a new tumor in Oct of 2012. Where is your new tumor located? Do you have Hashi's too? I would suggest a second opinion if possible. MD Anderson in Houston is just awesome.


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## joplin1975

Good luck, Abcdefg! I'll be thinking of you!


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## Abcdefg

Thanks ladies!

susie: the second tumor is somewhere above my left clavicle. It's not visible, was only seen on US. From all the reading I've done, it's a bad place to have one . And no, no Hashi's.

Likely I'll need another surgery with dissection, and EBR.


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## Andros

Abcdefg said:



> Biopsy scheduled for Monday. Could have been tomorrow, but I can't get out of my work shift.


As you know; we are "all" very very concerned for and about you! Please know that we are holding you dear in our hearts and prayers.

Good luck Monday!

It is quite common for thyroid patients to end up with gallstones, kidney stones, salivary stones, tonsil stones etc..

Because the motility of our systems is severely impeded by this disease. Nothing really works as it should.


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## susieintexas

Do you know how many clips they used in the original surgery? Evidently my first surgeon was clip happy which would make my clavical area almost impossible to get to. Did they do the CT with iodine contrast? The Dr up here missed the lymph, that my second opinion found because she only did sonos.


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## Abcdefg

No, the CT was done with I123 the day after my WBS. I wasn't given any regular contrast. I discussed with the new Onc the possibility that the tumors are becoming non-avid-she agreed it could be happening.
Clips? wut? lol. Not a clue about that.

I'm wondering if they'll order a PET next.


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## susieintexas

I would hope so but I have heard they are really hard to come by in Canada.


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## Abcdefg

I forgot to mention that I've got 2 new lumps forming on my throat-north of where the thyroid was. I've felt them enlarge over the last week, and they're now visible when I bend my head back. Do you think it could be lymphs or nodules? And is it possible for them to come up that fast? I'm hoping they'll look and/or biopsy them tomorrow, but unless the Dr added it to the order, I doubt it.


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## Octavia

Abcdefg...if those turn out to be cancerous, I think you should have your pathology re-evaluated to see if you have a more aggressive form of thyroid cancer such as a tall cell variant or other forms.


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## joplin1975

Yes, agreed with Octavia. It would be unusual for it to come back so quickly, but it can happen with the aforementioned more aggressive variants of PTC.


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## susieintexas

My guess would be lymphs but I would mention it to the Doc for sure. Have you had a cold lately? My sons lymphs swell in his neck when he is sick.

ETA: they stay swollen for about a week then gradually go back to normal.


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## Abcdefg

Home from the wars . The Radiologist who did the biopsy was awesome. I had a chat with him first and told him about the lumps. He did a thorough scan of that area and said he saw tissue, but nothing he could biopsy.

Then he went for the clavicle area. A look of confusion crossed his face. Turns out, the tumor was NOT in that area, but in the mediastinum/sternum (hmmm WBS pointed that out). He got up and pulled up my previous WBS and Spect Ct to see what they showed. Then he called me over to look at the images. Clearly visible on the Spect was a mass extending down from the bottom of the thyroid bed into the sternum.

US today measured it at 7.5 cm. He figures it's much larger, but the US can't see through the sternum. He was quite upset that the other doctors missed this.

Anyway, he froze me, then proceeded to poke me with 8 different needles, digging wayyyyyyy down. The biopsy took about 20 mins total. He went in through my scar (which is now throbbing and swollen). There was some bleeding, so I was kept a while longer so they could put pressure on it.

He also pulled up my blood results from the 37 different tests done 2 weeks ago. My WBC and Neutrophils are out of range on the high side, and my platelets are low. He said that can indicate metastasis.

Octavia: thank you for that idea. I'm going to try to have my slides sent out of province for reevaluation.

Oh, next up: Urgent MRI and CT scan. Radiologist put in the requisition while I was there. He said they need to look at my lungs and how deep this tumor goes.


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## Octavia

Wow...you've got a lot on your hands, for sure.

:hugs:


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## joplin1975

Oh man...well, at least he sounds like a proactive doctor...I'm glad you finally have one on your side!


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## susieintexas

Wow. Hugs to you!! Keep us updated on the next set of tests and the biopsy results.


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## jenny v

Dang, you've got a lot on your plate, don't you?? :hugs:

Hang in there and keep us updated. We're all pulling for you.


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## Abcdefg

Getting the runaround from the Cancer agency, so I contacted my GP today to see if the results were in. Here's the WTF part: report says "thyroid nodule"

Seeing as I don't even have a thyroid, looks like they made ANOTHER mistake. Only good news is it shows bland follicular cells in the aspirate. But I seriously have no bloody idea what it means, since it was sampled from my Sternum.

But I do know, unless they can prove to me its cancer, I'm not having any more surgery, or testing. I've had it. I can't take any more of this stress, and the mistakes they continue to make boggle my mind.


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## Abcdefg

Update: Rad Onc just called. She said she phone the radiologist today to clarify his report. She was as confused as I was about the results and he explained to her that the area they biopsied was very difficult to get to, and he felt he only sampled a tiny spot. They both think it's residual thyroid tissue behind my sternum, but to be sure they're ordering a CT with contrast (in a month or 2 likely) and sending me back to see the surgeon for his take on it. I am not interested in another invasive surgery if there's no good reason for it, so I'd like to hear from him if he left part of the left lobe behind.

Anyway, that's all I know. It'll be few more months of worrying, but I'm going to try to not stress about this too much. She did mention that they may go ahead later and order a small dose of RAI just to ablate any remaining tissue to make follow up easier.


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## kidsabc

Hi! I'm new to the board and am learning so much from everyone's posts. I'm sorry to hear about the possibility of recurrance  It sounds like you are being very strong. I was wondering if you had RAI after your TT? And what do they mean that they think it is residual thyroid tissue in your sternum??


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## susieintexas

I would be confused too. What an odd path report.


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## Abcdefg

Update

CT scan (with contrast) tomorrow (Mar 12)
Meet with ENT Mar 22nd
Meet Rad Onc April 9th

Gallbladder surgery May 7th (new general surgeon who also does cancer surgeries). Hoping he can do my sternum too. Going to discuss with ENT.

Found a central node above my scar last week. Gen Surgeon confirmed it's a lymph. So it looks like a neck dissection is in my future. But... not going to consent to more neck surgeries unless they agree to RAI. There's just no point, as it'll keep coming back. That's a discussion I'll have with Rad next month.

I've also cut my T4 back to 150 mcgs (from 175). I was having horrible heart palps and racing. My appetite was outrageous too. I feel a lot better this last week since I stopped taking the extra pill. Rad onc doesn't know this since I haven't seen or talked to her since mid Feb.


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## joplin1975

I think that's a good plan...I may be stating the obvious, but the plan would be to do the neck dissection and then the RAI, right? I don't think they can do the RAI and then surgery (well, unless lots of time has passed).


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## Octavia

I agree with joplin...surgery first, then RAI. The RAI is good, but the less tissue you ask it to kill, the better.


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## Andros

susieintexas said:


> Wow. Hugs to you!! Keep us updated on the next set of tests and the biopsy results.


You are in my thoughts and prayers for all of this. The doc you have now is a blessing; he truly is.


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## Abcdefg

Thanks ladies! Nothing's set in stone though. As we know, my testing only leads to more testing and no answers. Arggg.


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## Abcdefg

Ct was done on Tues. They made me go have a chest xray after before discharge. Ping! Something going on.:rolleyes:

So, yesterday, I was having a bad gallbladder attack (brought on by the contrast?), and went into my GP.

Amazingly, she had the CT results. _Less than 2 days after the scan_.

Results:

1) 2.4 x 2.1 x 1.1 cm solid mass found in suprasternal notch, abutting up against the carotid artery and brachiocephalic vein (bad spot!!!). Repeat biopsy recommended-suspicious for recurrence.

2) 1.6 x 1.7 cm solid nodule in left breast at midline. Mammo and US recommended followed by FNA (had mammo/us in Feb, and they benigned it)

3) Hypoechic lesion in left KIDNEY. Cannot rule as cystic. Renal ultrasound and FNA recommended to rule out tumour mass. WTF!!

So, what this means is in the last month, I have developed 2 new mets. I had an US on my kidneys Jan 26th (looking at gallbladder) and they were clear. Now, I have a tumor in the left kidney (explains the back pain on that side).

My GP sent off a req for a renal US-waiting on a date/time. Still haven't heard from Rad Onc (who had ordered the CT).

I see the ENT surgeon next Friday for consult about the mediastinal mass, and that's all I know at this point.

Moral of the story: dr's letting cancer go untreated for 9 months means it spreads. I think I likely have a more aggressive variant than they originally diagnosed, but my biopsies keep coming back follicular thyroid tissue.


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## joplin1975

Oh, cripes, I'm sorry...I don't know what to say other that, yes, must be an aggressive variant. How are you holding up?


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## Abcdefg

I'm numb to the whole thing. Nothing shocks me anymore.

to note: still haven't heard from the Rad Onc. Good thing my GP finds it more urgen eh?


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## Octavia

Unbelievable, really.

Excuse my language here, but WTF are they waiting for?

Seems like you should be getting a strong treatment dose of RAI as soon as possible before those distant mets get even worse.

Can you show up at the Rad Onc's office and ask what the holdup is?


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## susieintexas

Oh Wow! Praying for some speedy treatment. :hugs:


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## jenny v

I'm with Octavia, what the h*ll is going on with your doctors up there that you are getting such shabby treatment?? You deserved the best from the beginning and it doesn't seem like you got anywhere near that. I'm so mad on your behalf that your treatment was so bad and you've ended up where you are now. I wish there was more we could do for you. :hugs:


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## Abcdefg

The doctors are idiots. But ENT surgeon agrees something needs to be done. I saw him today, and he said (from reports, TG levels, and exam) that the mass in the sternum is a clump of metastatic lymph nodes.

I'm now scheduled for a Central ND in May. That makes 4 surgeries in less than 10 months. He's also requesting I have RAI in June to nip it in the bud. The fact I've had a recurrence this quickly alarms him.

Also, had kidney US today. They couldn't get clear pictures of the kidney mass-it's in an odd location near the bottom centre of the kidney and vague on US. So next up is an MRI and repeat CT.


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## joplin1975

Oy. Well...it's progress. I was told recently that progress is always good...


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## Andros

Abcdefg said:


> The doctors are idiots. But ENT surgeon agrees something needs to be done. I saw him today, and he said (from reports, TG levels, and exam) that the mass in the sternum is a clump of metastatic lymph nodes.
> 
> I'm now scheduled for a Central ND in May. That makes 4 surgeries in less than 10 months. He's also requesting I have RAI in June to nip it in the bud. The fact I've had a recurrence this quickly alarms him.
> 
> Also, had kidney US today. They couldn't get clear pictures of the kidney mass-it's in an odd location near the bottom centre of the kidney and vague on US. So next up is an MRI and repeat CT.


Sending healing thoughts, hugs and prayers.


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## Abcdefg

Still haven't heard from Rad Onc. GP ordered my kidney US (had it last friday). Results were in on Monday. Her office called requesting I come in for results-scheduled for Monday, April 1st.

It appears I'm in for an uphill battle with Rad oncs again. If she hasn't got a plan in place when I see her April 9th, I'm asking to be released back to my GP so we can seek treatment elsewhere.

Arrrrrgggggg.


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## joplin1975

I just...can't remotely understand their thinking. It boggles the mind.


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## Abcdefg

I know eh? I'm textbook RAI, but they've dug their heels and seem to refuse to do it. I'm convinced they are doing everything they can to not admit they made a mistake.


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## jenny v

I just can't even...with your Rad Onc! How you haven't gone up to her office and just smacked her in the face is beyond me. You are showing much more patience and grace than I could have!


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## Katee1

I know I am coming in late to this conversation, so sorry if this has been covered, but, can you not fire the team?

First ---I am praying for you now and as I've been reading this post. Want you to know.
Second ---this is an example of how women are treated, sadly, by many in the medical profession.

I hate to even give this advice as it gives in somewhat to the system, but this is your life, so no time for politics and protests  -can you bring an imposing brother/husband/male-friend to your appointments and/or do you have a friend or relative who is a doctor who can give them a scary phone call about bad reputations among drs and what are they doing over there etc.?

Oh....and, can you fire them?? They work for you. From some posts I've read, I think perhaps a few have forgotten this.

Sending prayers your way. For your drs I pray for their competence and reasoning..that they are able to improve.


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## Abcdefg

Can't really fire the team- not a whole lot of other options here 

2 appts today:

Breast surgeon-to discuss biopsy? I guess

Rad Onc: no clue. Still haven't heard from her since my CT.


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## Abcdefg

Update:

Breast surgeon looked at all my images, tried to aspirate/biopsy the (what they originally thought) was a complex cyst, and couldn't get any fluid. She was quite shocked that it was solid apparently. The US images show calcifications and debris, but it looked like cyst fluid also-which it isn't. I'm being sent for a breast MRI now. Arg

Then I saw the Onc. Not much happening there. She's waiting on the pathology from my May CND before discussing any possible treatments. She did mention that she believes all three tumors have nothing to do with each other.

So, I'm gonna keep on trucking. I meet with the Urologist next week for the kidney deal, have bloodwork to check TG and TSH on April 30th, surgery May 7 & 17th, MRI's somewhere in there, then meet Onc June 6th.


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## Octavia

Well, like you said, keep on truckin. We're pulling for you!


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## joplin1975

Keep on keeping on...

We're thinking of you!


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## jenny v

You have a great attitude during all of this!

What are the surgeries for in May? Are they planning to remove all three tumors at different times?


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## Abcdefg

jenny v said:


> You have a great attitude during all of this!
> 
> What are the surgeries for in May? Are they planning to remove all three tumors at different times?


Gallbladder removal (full of stones, causing me pain)

Central neck dissection (removing the sternum mass and surrounding nodes)

The other lumps n bumps are still being investigated. No clue what will be done with them yet. The onc thinks it might be 2 or 3 different cancers :sad0049:, but I'm hoping it's nothing.


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## Andros

Abcdefg said:


> Gallbladder removal (full of stones, causing me pain)
> 
> Central neck dissection (removing the sternum mass and surrounding nodes)
> 
> The other lumps n bumps are still being investigated. No clue what will be done with them yet. The onc thinks it might be 2 or 3 different cancers :sad0049:, but I'm hoping it's nothing.


Oh, me too! I am in your corner 100%!!! Our poor friend; you have been through so so much!!


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## joplin1975

Abcdefg said:


> Gallbladder removal (full of stones, causing me pain)
> 
> Central neck dissection (removing the sternum mass and surrounding nodes)
> 
> The other lumps n bumps are still being investigated. No clue what will be done with them yet. The onc thinks it might be 2 or 3 different cancers :sad0049:, but I'm hoping it's nothing.


Hot dang that's a lot to take in. Will you keep us updated so we know you are ok?


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## Abcdefg

joplin1975 said:


> Hot dang that's a lot to take in. Will you keep us updated so we know you are ok?


Of course . Thanks for asking.

I'm looking forward to my vacation to Mexico on April 22nd. I have a whole week of no appts or running around! (time to relax before crap hits the fan)


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## Octavia

Abcdefg said:


> I'm looking forward to my vacation to Mexico on April 22nd. I have a whole week of no appts or running around! (time to relax before crap hits the fan)


Wonderful - enjoy it!


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## gccruiser

Hello to all...I am new to this very interesting and knowledge based forum on the discussion of Thyroids. I am having a biopsy of my thyroid nodules tomorrow morning, Fri., because the ultrasound shows a 3.2cm nodule on the left side, and a smaller one on the right. The nurse who gave me my u/s report said it is _solid_, and I asked her if it said _vascular_, or _calcified_, and she said no. I am so worried about malignancy. I also heard and read where 90-95% of these nodules are benign, even solid ones; but solid ones have the potential to be malignant vs. ones that are _fluid filled._ Can anyone help me out with advice, experience, and information. Thank you so much.
G Crews


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## Abcdefg

So, it looks like I have a 2nd primary cancer. Renal cell carcinoma, 1.7cm. The urologist has ordered a biopsy on it (May 27th) for definitive diagnosis, but the good news is it is small, and likely can do the "watch and wait" for a while. They don't normally operate until it is 3+ cm. Which is good as I still have to get through 2 surgeries in the next 2 weeks (Gallbladder on Tues, ND on the 17th). It appears the ENT has changed my surgical order to a MRND because of the new lymph mets. Oy.

It's a lot to take in, and I find myself becoming more numb every time they tell me they me they found something else.


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## joplin1975

Oh...oh, no. I'm so so sorry.

I'm so angry on your behalf. I just don't understand how they could have treated you so poorly...


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## webster2

I am so sorry to hear this. I'll keep you in my thoughts.


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## Andros

Abcdefg said:


> So, it looks like I have a 2nd primary cancer. Renal cell carcinoma, 1.7cm. The urologist has ordered a biopsy on it (May 27th) for definitive diagnosis, but the good news is it is small, and likely can do the "watch and wait" for a while. They don't normally operate until it is 3+ cm. Which is good as I still have to get through 2 surgeries in the next 2 weeks (Gallbladder on Tues, ND on the 17th). It appears the ENT has changed my surgical order to a MRND because of the new lymph mets. Oy.
> 
> It's a lot to take in, and I find myself becoming more numb every time they tell me they me they found something else.


The "game plan" is to fight like hell! We all love you and care about you. Just come on here and chat, vent and be yourself. We can be your support group from afar.

Sometimes perfect strangers can care more than a person could ever believe and this is true of many of our posters.

We are a very very caring group.

And it is a lot to take in; there is no question of that. I know how I feel when I read what you are going through which leads me to think how could I ever even imagine how "you" feel.

You are going to come out the winner!!!


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## jrohrigj

sending prayers your way


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## jenny v

Ugh, such crappy news. I'm praying for you, too, and sending positive thoughts your way.

Is there some kind of review board/hospital brass you can tell your story to? These doctors have failed you in so many ways and deserve to be taken to task for it.


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## Octavia

jenny v said:


> Is there some kind of review board/hospital brass you can tell your story to? These doctors have failed you in so many ways and deserve to be taken to task for it.


I couldn't agree more. Concentrate now on getting well, THEN see what can be done to make sure this doesn't happen to you or anyone else in the future.

Sending a hug your way...

:hugs:


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## I DClaire

Abcdefg said:


> Can't really fire the team- not a whole lot of other options here
> 
> 2 appts today:
> 
> Breast surgeon-to discuss biopsy? I guess
> 
> Rad Onc: no clue. Still haven't heard from her since my CT.


It's this same way where I live. I could write a book about my own thyroid misadventures the past few years but they pale in comparison to someone who has to not only be fighting cancer but fighting just to get answers.

I hope everything is going to be O.K.


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## Abcdefg

Many thanks xoxo. I'm handling the best way I know how- by ignoring all the niggling thoughts in my head. I'm still hoping for a good outcome, but I've accepted that it may not happen. My cancer has had a very long time to spread unfortunately. Even if they finally decide to do something, it'll be 3-6 months at least. I've had 2 CT's with contrast and the iodine has to deplete before RAI can even be considered. I just hope no new mets develop in the meantime.

I would take the doctors to task on negligence, but I'm emotionally drained right now. It's all I can do to get up in the morning. I worked my last shift today for a while, as I'm out on Med leave starting tomorrow until at least mid-June.


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## Abcdefg

Neck dissection in the morning....I'm a wee nervous. Cross em all goes well. I'll update when I get home from the hospital.


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## joplin1975

I gots everything crossed for ya!  Good luck!


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## jenny v

Good luck! I hope it goes really well!


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## Zheni

Sending all positive thoughts your way! We're pulling for you!!!
You are loved and we care about you.
Wishing you a speedy recovery.
Zheni


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## abymom99

Thinking of you Abcdefg! Please let us know how you are doing. hugs3


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## Abcdefg

Thanks bunches! xoxo

I got home this afternoon. They released me after lunch. It wasn't so bad. Much easier, and less painful than the TT. My swelling makes me look like I have the mumps lol, but I'm icing it down constantly. Surgery took about 2 hours, and he was able to get all the central nodes and my mediastinum mass out through the old neck scar. So no hockey stick! Woot!

I just had a super hot, awesome shower when I got home (after napping a few hours) and I feel pretty good. Looking forward to when the incision is healed so I can go for a therapeutic massage.

Thanks again for all the well wishes. Next up is my kidney biopsy on Mon, May 27th, then meeting with the Rad Onc on June 6th.


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## joplin1975

I'm so happy to see such a good report! Rest up!


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## abymom99

So glad to hear it Abcdefg! I hope you're still doing well this morning also.  When will you get the results of the findings on the lymph nodes?

I'm a bit afraid with my lymph node problems and them being unable to biopsy one, that I might be in for removal of a few myself. I see an ENT next week though so we'll see. Hopefully she can just do some more imaging and maybe find one that can be done via FNA.


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## Abcdefg

I'm calling my GP's office on Friday to see if the Path report is in. Otherwise I have to wait until June 8th when the ENT will tell me.

Abymom: crossing fingers, eyes and toes for you!


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## abymom99

Abcdefg said:


> Abymom: crossing fingers, eyes and toes for you!


Right back at ya Abcdefg! hugs1


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## Abcdefg

Pathology came in today. My GP phoned at 9am to tell me verbally all the tissue was *benign*. While I'm excited they didn't find cancer, I'm also upset that I had to endure another invasive surgery for basically no reason. Ugh. Anyway, seems that I grew back thyroid tissue into the thymus, with multiple nodules. One for the books I think.

Main elements:
-8 benign nodes
-gelatinous multinodular thyroid tissue
-benign nodular thymus tissue.


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## joplin1975

Phew. PHEW.

Question: if it was benign, do they know why the Tg is elevated?

ETA: how are you feeling?


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## Abcdefg

I don't think they know anything lol. The new thyroid regrowth was probably elevating the TG, but I doubt I'll ever learn why really.

I'm feeling ok. Pretty tired, and I sleep most of the day. Stitches are still healing, and my neck is very puffy. Monday I go for my kidney biopsy (sedated, admitted to the hospital). I'm supremely anxious about it. The risks are pretty signifigant, including bleeding requiring a transfusion. Oy vey.

Oh, meant to add: my GP lowered my Synthroid dose to 137mcg. I had self-adjusted from 175 down to 150 after I saw my tsh results from May 2nd (0.07, and T4 @ 24/range 11-22). She paid no attention to that test, but my recent one from May 22 was 0.21. She doesn't want me hyperthyroid-thinks it's unnecessary at this point in time. Wants me 0.50-0.75. I'm ok with that, since I had horrible heart palps and insomnia at the higher doses.


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## abymom99

Hi Abcdefg - I know you had your kidney biopsy yesterday and I just wanted to check in to make sure you're doing okay. Just update us when you can. I hope everything went smoothly! Great news on the lymph nodes as well. hugs4

BIG hugs1 to you!


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## Andros

Abcdefg said:


> I don't think they know anything lol. The new thyroid regrowth was probably elevating the TG, but I doubt I'll ever learn why really.
> 
> I'm feeling ok. Pretty tired, and I sleep most of the day. Stitches are still healing, and my neck is very puffy. Monday I go for my kidney biopsy (sedated, admitted to the hospital). I'm supremely anxious about it. The risks are pretty signifigant, including bleeding requiring a transfusion. Oy vey.
> 
> Oh, meant to add: my GP lowered my Synthroid dose to 137mcg. I had self-adjusted from 175 down to 150 after I saw my tsh results from May 2nd (0.07, and T4 @ 24/range 11-22). She paid no attention to that test, but my recent one from May 22 was 0.21. She doesn't want me hyperthyroid-thinks it's unnecessary at this point in time. Wants me 0.50-0.75. I'm ok with that, since I had horrible heart palps and insomnia at the higher doses.


How are you doing after the kidney biopsy?


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## Abcdefg

They couldn't do it. The Uro ordered the wrong imaging. Should have been CT, turned out it was US guided. After spending 3 hours there being poked and prodded, waiting in Day Surgery, they spent 30 minutes trying to manuver the probe to where he could see it. No dice. The tumor is too deep to the kidney and close to my spleen. The radiologist said it would be too dangerous to attempt. So they sent me packing. He said he would phone the Uro, but he never did.

I called the Uro's office this morning to talk to him and couldn't get past his secretary. She told me he was "too busy to look at it today" but she'd pass along a message.

That made my decision easy. I'm not having any kind of biopsy on it. And I'm not going back to him. Any doctor's office who treats patients like a nuisance when it's something urgent can kiss my ass.

I'm at the surrender point with all of it now. I can't do this any more. No more waiting, scans or appointments. The fact is, it's only ever been important to me, and never the doctors. So I'm calling uncle.


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## abymom99

I'm so sorry Abcdefg. I can emphathize as this is exactly what I just went through with my endo. Although my biopsy ended up being benign, it was highly suspicious based on ultrasound findings including enlarged lymph nodes and no one seemed to care. The endo even forgot about my lymph nodes completely, since they weren't able to biopsy those. I have since made an appointment with a ENT that I have heard wonderful things about and I see her tomorrow as I want a second opinion on all of this.

I know you've been through the mill, but I encourage you to press on until you find the one in a million doc out there that is amazing and really do care about their patients. Where approximately are you? Perhaps someone here can make a really great recommendation for you.

Please try to hang in there. Life is too precious to give up, even if your current physicians have. hugs1


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## joplin1975

Oh no...this is really just unacceptable. Totally and completely. I'm so, so sorry...


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## Abcdefg

Thank you Abymom. I was super upset yesterday (have been for days). Angered me so much that the Dr never called me back when it was important. Not like I phoned for a stupid reason.

I'm sorry to hear about your issues too. good on you for seeking another opinion. Hopefully they'll be able to recommend something for you.

Hugs back to you .


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## Abcdefg

It's ok Joplin. It's become routine for them to make my life FUBAR. I'm trying to clear my head and reboot. Thanks for the support though. You're always so sweet.


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## abymom99

I just quickly looked back through your posts, but didn't see where you've been seen by an oncologist unless I missed it. There should be someone coordinating all of this. Have you been seen at a cancer center? If not, I would definitely call to see if you could get into one, not sure what your health plan allows though. I think part of the problem may be that you're dealing with a GP, a urologist, etc., instead of someone that handles cancer full-time. In my experience, the GP's and urologists and such seem to all be stuck in their little world, although I'm hoping the same isn't true for my new ENT. If they haven't referred you to an oncologist, that is unacceptable in my opinion, particularly given your situation.

I apologize if I'm coming off rude in any way, I really don't mean to be. I'm just now very frustrated for you! You deserve to get the help you need!!!


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## abymom99

Abcdefg - I just wanted to let you know that I've been thinking of you. Please let us know how you are doing! I hope well after all you've been through recently. hugs1


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## Andros

Abcdefg said:


> It's ok Joplin. It's become routine for them to make my life FUBAR. I'm trying to clear my head and reboot. Thanks for the support though. You're always so sweet.


You poor dear! Nothing like being stuck on a back burner.

Abymom99 has an awesome suggestion. She "really" does. Meanwhile, we will all do our thing on your behalf whether it be sending good karma, white light, good thoughts and prayers.

Do find a cancer center. Tell them what has been happening to you!

Sending caring hugs,










PS: Joplin is by far one of the best!!! Truly!


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## Abcdefg

Hi all. Sorry for being MIA. I've had a crazy few months, coupled with a new computer and no bookmarks! Took me a bit of surfing to find this website again.

Anywho, I'm going in for a major surgery on Tues 15th. I was diagnosed with RCC (clear cell kidney cancer) mid Aug, and have had to wait until now for a surgical date. I'm also in a recurrence of the thyca.

This past week I endured 5 blood draws, 1 IV, 2 Thyrogen injections and a Pet/ct. My Rad Onc decided based on Aug's TG (which had quadrupled since June) that I'm likely non-avid and she wanted to find where my issue was.... hence the PET.

So yes, that makes TWO cancers at the same time. I had a nuclear bone scan last month which was clean (whoohoo), so we know for certain I have no bone mets, and hopefully the PET will show only thyca in some nodes. Whether I submit to another (the 4th) neck surgery remains to be seen. I'm hesitant. I have to get thru a very serious, painful kidney OP first, with 6 or so days in the hospital. After that I have my followup for the PET results on Oct 25th

Wish me luck.


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## joplin1975

Wow.

I'm so sorry to hear this. After the nephrectomy, what's the treatment plan for the kidney cancer?

My goodness, this is so much. I don't eve now what to say, other than I'm keep you in my thoughts. Please keep us updated, ok?


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## webster2

I am also very sorry to hear about what is going on with you. I'll keep you in my thoughts too.


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## Andros

Abcdefg said:


> Hi all. Sorry for being MIA. I've had a crazy few months, coupled with a new computer and no bookmarks! Took me a bit of surfing to find this website again.
> 
> Anywho, I'm going in for a major surgery on Tues 15th. I was diagnosed with RCC (clear cell kidney cancer) mid Aug, and have had to wait until now for a surgical date. I'm also in a recurrence of the thyca.
> 
> This past week I endured 5 blood draws, 1 IV, 2 Thyrogen injections and a Pet/ct. My Rad Onc decided based on Aug's TG (which had quadrupled since June) that I'm likely non-avid and she wanted to find where my issue was.... hence the PET.
> 
> So yes, that makes TWO cancers at the same time. I had a nuclear bone scan last month which was clean (whoohoo), so we know for certain I have no bone mets, and hopefully the PET will show only thyca in some nodes. Whether I submit to another (the 4th) neck surgery remains to be seen. I'm hesitant. I have to get thru a very serious, painful kidney OP first, with 6 or so days in the hospital. After that I have my followup for the PET results on Oct 25th
> 
> Wish me luck.


Oh, boy!.............................

This is terrible and I am so so sorry for all your troubles here of late. You have had your plate piled high; that is for sure.

Just know that all of us here care for and about you and please please let us know when your kidney surgery is scheduled.


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## Abcdefg

Thanks everyone for the support :hugs:

I'm having surgery 9am Tues morning. Getting a bit anxious. I'm such a wimp when it comes to pain! The anesthetist ordered an Epidural and a PCA pain pump, but hopefully my surgeon won't be stingy with pain meds.

There are no treatments for this cancer besides surgery. No effective ones anyway. Just like Thyca, it doesn't respond to chemo or rads. Surgery is pretty good at eradicating it (here's hoping). I guess in a way it's fortunate that my CT back in March looking for Thyca mets found it-otherwise it might have been years, and it would have been huge. The fact the tumor is <2cm right now (not sure, been a while since they measured) is a good thing.

Still no plan for treating the Thyca either. The dilemma we face is my recurrences are happening faster than can be treated with surgery or RAI. I won't even know what they have in mind for another month-but if history repeats itself, there won't be a plan. Sigh.


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## jenny v

I missed adding this earlier since I had my TT last week, but I hope the kidney surgery went well and you're recovering quickly. You've been through too much this last year and I'm sending healing thoughts and prayers your way.


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## Andros

Abcdefg said:


> Thanks everyone for the support :hugs:
> 
> I'm having surgery 9am Tues morning. Getting a bit anxious. I'm such a wimp when it comes to pain! The anesthetist ordered an Epidural and a PCA pain pump, but hopefully my surgeon won't be stingy with pain meds.
> 
> There are no treatments for this cancer besides surgery. No effective ones anyway. Just like Thyca, it doesn't respond to chemo or rads. Surgery is pretty good at eradicating it (here's hoping). I guess in a way it's fortunate that my CT back in March looking for Thyca mets found it-otherwise it might have been years, and it would have been huge. The fact the tumor is <2cm right now (not sure, been a while since they measured) is a good thing.
> 
> Still no plan for treating the Thyca either. The dilemma we face is my recurrences are happening faster than can be treated with surgery or RAI. I won't even know what they have in mind for another month-but if history repeats itself, there won't be a plan. Sigh.


Hope you are doing well. I don't think this kidney surgery is a bounce-back situation so take care and let us hear from you when you are able.


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## gelf

I just read all of your posts and am in shock. you've had a year similar to mine and there is still a few more weeks (2 breast cancers, hurthle cell adenoma in thyroid -- lost right breast and total thyroidectomy on same day) -- now my kidney is "Dead". I also have to get a colonoscopy soon (Family history of colon cancer and diverticulitis). i'm waiting on the nephrologist appointment. they dont' think I need to have my kidney out yet. and my 6 month mammogram is in the works for January. (they found the 2nd breast cancer on the 6 month followup of the first one) -- so i'm a bit anxious about all three areas.

Hugs!


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## joplin1975

Wishing you all the best. You've been through so much...I have to believe you're due for some good news.


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## Andros

gelf said:


> I just read all of your posts and am in shock. you've had a year similar to mine and there is still a few more weeks (2 breast cancers, hurthle cell adenoma in thyroid -- lost right breast and total thyroidectomy on same day) -- now my kidney is "Dead". I also have to get a colonoscopy soon (Family history of colon cancer and diverticulitis). i'm waiting on the nephrologist appointment. they dont' think I need to have my kidney out yet. and my 6 month mammogram is in the works for January. (they found the 2nd breast cancer on the 6 month followup of the first one) -- so i'm a bit anxious about all three areas.
> 
> Hugs!





gelf said:


> I just read all of your posts and am in shock. you've had a year similar to mine and there is still a few more weeks (2 breast cancers, hurthle cell adenoma in thyroid -- lost right breast and total thyroidectomy on same day) -- now my kidney is "Dead". I also have to get a colonoscopy soon (Family history of colon cancer and diverticulitis). i'm waiting on the nephrologist appointment. they dont' think I need to have my kidney out yet. and my 6 month mammogram is in the works for January. (they found the 2nd breast cancer on the 6 month followup of the first one) -- so i'm a bit anxious about all three areas.
> 
> Hugs!


Hopefully your kidney is just reacting to all the meds and chemo. Bless your heart. Like our friend Joplin; we all are hoping for some good news.

You have been through hell and back. Hopefully good news is on the way.

Bless your heart!


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## jenny v

I've been wondering about the original poster in this thread, Abcdefg, and hoping she's doing okay.


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## Abcdefg

Hi everyone. Thanks for all the well wishes . I've been pretty busy since my surgery and haven't been online much.

Ok, update time.

The surgery in Oct was pretty painful. The epidural was a failure-seems the anesthesiologist inserted the catheter in the wrong spot. It didn't work at all, and they removed it 12 hours later, but I remember being in excruciating pain that whole time (when I wasn't passed out). The PCA was inserted, then I had an allergic reaction to the meds they used. 24 hours later, they started using IV meds. I was discharged home on day 4, but my surgeon forgot to write out a prescription. I ended up in the ER the next day with a pain of 11/10! The next week is a blur. I had my staples out 10 days after surgery, then a follow up mid Nov. My scar is huge- 9 inches long, and still puffy.

The RCC on pathology was Grade 2, but still small, so that's reassuring. I have a followup CT in May.

For the Thyca: not much happening here. I was discharged by the cancer agency in Oct, so only my GP is following it. I actually have an US next week to check on the mass that was found in Aug.

I'm still off work on Short Term leave (8 months now!), but should be returning to work in the near future.

I have incredible fatigue (is it from the surgery? meds?) and take lots of naps. Only issue right now is the back pain I've had every day since the spring- my dr thinks it's nerve damage from surgical positioning, but is sending me for another xray to check on it (that's Monday). I'm on Lyrica to see if it helps.

All in all, I'm doing ok. I have to say I enjoyed a 2 month break from the poking and prodding. It gave me time to reflect on everything, and make some decisions. I'm not having any more surgeries. My body has been through so much, and I'm not certain all the operations have done much good. Crossing fingers I stay stable.

Gelf: oh dear, I'm sorry you've had such a rough go too. . When it rains it pours. Feel free to message me if you want to chat. I get email notifications of PM's, so if I don't log in, I'll still see it. Best wishes, and healthy thoughts go out to you.


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## mlorraine

Hi abcdefg I have been reading your story and was wondering how where you doing? I really hope you got some answers and that the things got easier for you????


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## Abcdefg

Wow. Long time. I forgot about this board . I've been accidentally on purpose avoiding all things medical for a few months.

Except today I'm finally having RAI. 3 years after thyca. And 3 recurrences. My most recent surgery was in Jan 2015-hemorrhagic ptc found lying on my jugular vein. My original surgeon refused to touch me again, so I had to find a new guy for #4. Yes....4 times they've opened my scar.

Since I last posted...I also had a very rare breast tumor calked a Phylloydes removed and was diagnosed with Cowden Syndrome. I'm currently waiting on some genetic results for a probable renal cell diagnosis called Bap1.

So much poking and prodding. ..which is why I've taken a break for a bit. We has to wait 7 months after my recent surgery to do RAI as I was scheduled for a CT in march...but my Dr didn't order it until May. Which delayed things.

I'm sitting in the car between appts right now. Up next is my quick uptake scan then i131 dose..then home. I'll be in isolation until Monday.

Anyway...I'll try to update after I get my body scan results after the 14th . Thanks all.


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## joplin1975

H.O.L.Y. COW.

You sound like you have been through the wringer. I am more than astounded that it has take four recurrences for you to finally get RAI. Do you know what size dose?

Good luck today!


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## jenny v

You are one tough lady!! I hope the RAI goes smoothly and you feel fine throughout. I never had it, but my friend who did said sucking on lemon drops and drinking a ton of water helped her.


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## Octavia

Abcdefg said:


> Except today I'm finally having RAI. 3 years after thyca. And 3 recurrences.


Absolutely crazy!!!!!

I'm so glad you're getting this treatment. Please keep us posted.

Sending positive energy your way...

hugs4


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## Abcdefg

Thanks ladies .

I had 49 mci...or 1800mbq. Driving home I swear I could feel it moving in my body lol. Legs hurt...neck hurt...headache. once I got home I crashed for 5 hours. 
My tsh this morning was [email protected]#. Thyrogen affects me like withdrawal hypo. This is the 4th time I've had a stimulated
Test. Last summer they made me do it the old fashioned way. At the 15 day mark my tsh was 138. I told the Dr's I would never consent to another test if they didn't give me thyrogen. I was off work for 6 weeks because of it. This time just 10 days.


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## jenny v

Dang, with a TSH that high, that round of RAI is going to work great, lol!


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## Abcdefg

I was super fatigued through yesterday. Feeling a lot better today. Except for rib and back pain. The ribs have been bothering me for a while but now I need to take advil for it. Not sure why they hurt .

A few other side effects are increased sense of smell *super power maybe? * to the point I could smell when my neighbor burnt something in her kitchen. Not enjoying this much. Another is sore throat
. It's not horrible and it's controlled with lozenges.

I see my surgeon and have TG levels done tomorrow. Then Tues/wed I'm scheduled for a work conference -but I'm not sure if I'm up to it. Sitting that long hurts.

Thursday is my WBS. hoping it's clear


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## joplin1975

My butt was kicked by RAI. Surgery? Piece of cake. RAI? I couldn't get out of bed for two days because everything hurt. I don't know how to explain it other than to say it hurt to exist in bed. Turning the channel on the remote? It hurt. Opening my eyes to watch TV? Same thing, it hurt. The after two days, I stopped hurting. I have no explanation!

I hope you have a clear scan. Please keep us updated, ok?


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## jenny v

Hang in there! And don't push yourself to go to a work conference if you don't feel up to it--you need to take care of yourself first right now. Let us know how the WBS goes--keeping my fingers crossed.


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## Abcdefg

Well. ...picked up my results today.

The news is not good. At least 3 tumors in my mediastinum and one in my liver. No idea what or anything they can do for me now.

I see my onco tomorrow but likely it'll just be more testing and faring around for the next 6 months.

The report recommended a CT, and liver ultrasound.


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## joplin1975

Damn.

Could they do another round of RAI? I am really surprised how low the dose was that they gave you....


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## Abcdefg

I have no idea what they'll propose. I was also surprised by the low dose. But I had to beg even for that. I see the main issue now that I'm maxed out on surgeries. I've had 4 and 3 surgeons have told me I can't have any more due to risk.

The liver is unknown. Not having surgery on it that's for sure. After what I went thru for the kidney I will never consent to another major operation.


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## jenny v

Ugh, that just sucks. Keep us posted, you're in my prayers.


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