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Latest test results - good news/bad news

Kathryn_in_MN's picture
Posts: 1258
Joined: Sep 2009

First off, we all like to blame everything on chemo, myself included. But I learned yet another lesson. When things just don't seem right, just don't write it off to chemo effects and do nothing.

When I saw my oncologist to discuss my rising CEA I told him that my anxiety levels were at an all time high for my life, and it was driving me mad. And that I was so tired of the extreme fatigue and not feeling like I got much accomplished because I'm just too darn tired to do anything. Add to that trouble regulating my body temperature and lots of sweats out of nowhere, in the day and in the night. (I already went through menopause for a few years, and the night sweats and hot flashes had quit before starting chemo, due to a hysterectomy for cervical cancer.) Add to that random heart pounding, frequent bowel movements with some diarrhea issues (which I attributed to my colonoscopy), and weight loss even when I was eating normal.

My family has a history of thyroid troubles and I've been tested a few times over the years, starting with my early 20's when I had fertility issues. I was borderline, but within normal range. My oncologist agreed it would be smart to check my thyroid. BINGO! I'm not so damn tired because I can't recover from chemo after 4 months. My TSA levels are way off. I'm tired due to hyperthyroidism. I can't wait to get it fixed and feel more normal again. ALL of the crap I've been dealing with (other than neuropathy) falls into the symptoms of hyperthyroidism. My mother has Hashimoto's, which is an auto-immune disease where the body thinks the thyroid is foreign and attacks it. Hashimoto's causes hypothyroidism. It is likely I have Grave's disease. It is also an auto-immune problem, but it makes the thyroid overproduce the hormones causing hyperthyroidism.

That is my good news. I know it is weird to call another medical problem good news, but I'm so happy to know what is wrong and that it is pretty easily fixed. My grandmother, mother, aunt and two female cousins, uncle and male cousin all have thyroid issues and take a pill daily. Not a big deal.

I had my PET/CT yesterday. Here is where the bad news part comes in. Chances are that I have cancer in 3 lymph nodes in my abdomen. We won't know for certain until after my biopsy Friday morning. I won't have results till next week. So more tests, more waiting... But I've pretty much resigned myself to the fact that I'm going back into battle again. If I can get my thyroid under control and my energy back it sure would help. I

I had a copy of the PET/CT report faxed to me:

1. Two new hypermetabolic lymph nodes in the retroperitoneum, and a small lymph node also in the retropertineum had increased uptake, highly suspicious for metastatic lymph nodes. The left periartic lymph node would be difficult, but accessible, for a CT-guided biopsy. One is in the aortocaval region and is 1.1 X 1.5cm. Another is in the left periaoritc region and is 1 X 1.2cm. Medial to the left periaortic region there is one smaller than 1cm, but it has a lot of uptake. These are all new since the May PET/CT.

2.New uptake over the region of the thyroid. Would favor this to be of benign etiology and may reflect a component of thyroid disease. (No surprise there after I just got TSH lab results, but if I hadn't talked to my oncologist and made the decision to check thyroid, we'd be doing that now.)

3. The previous area of increased uptake in the region of the pancreas has resolved. (Which is what I'd expect because the pancreatitis resolved.)

My family and friends expect me to stay positive and assume this is not cancer returning. And there is always the chance that I have some odd infection making my nodes enlarged and active, and making my CEA rise. But the reality is the chances are higher that it is cancer. Even the radiologist thinks so. I've had so many odd things happen, that nothing will surprise me. When I first heard yesterday about my thyroid results, and found that thyroid infection is rare, but does happen, I started praying for a thyroid infection. Infection could make CEA rise, and make my thyroid function off. But my enlarged nodes aren't anywhere near my thyroid... So I'm working on getting used to the idea of going back into battle. I decided after I got the news today that I was going to open a bottle of cabernet tonight and have a couple glasses, along with the 90% dark chocolate I bought yesterday, for a treat to celebrate today when I got good news (I was hopeful). But I've been told I can't have anything that will thin my blood between now and Friday; no aspirin, fish oil, vitamin E or alcohol. Damn! I can't even have my little private pity party. ;) I want to scream. I want to cry. But I'm back into "logic" mode, and the rest won't let loose yet. Probably after I get the results next week... this will probably be when I finally find out that I truly am stage IV, which has been suspect all along...

I know one guy in our support group who has the same oncologist as I have who was stage IIIc and did FOLFOX, and he was NED. For one year. Then a scan showed just one enlarged node. He had the biopsy and it was malignant. He had FOLFIRI and had the node removed. I don't know which order they did it. Do they remove the lymph nodes right away, and then do chemo? If I have cancer in these nodes, I want them OUT! I don't want more spreading through the lymphatic system getting into more lymph nodes and organs. I'm not sure if they can take them out laproscopically? Or would they open me up so they can get a good look around the whole area?

I can't believe I might have to get a third port. I can't believe I've had 4PET/CT scans, and I think 6CT scans (I'm starting to lose track), plus I'll be having another CT this week in one year? It is getting to the point where one worries about secondary troubles from that much radiation. The rollercoaster just keeps going and going. I used to love the slow days at the amusement park when we got to stay on and ride repeatedly. Not now. I've had enough. I want to get off!

A few questions for anyone here that has been through this. What is the CT assisted needle biopsy like? I've had ultrasound assisted needle biopsies of my breasts (and one time they broke 3 needles trying to get the biopsies). I only had a local for those - no big deal, but afterwards I was really bruised up. For this one they tell me that I'll get medication to make me really groggy. Is this painful? Any pain afterwards? I have the procedure at 10AM and have an appointment with the primary DR at 4PM about my thyroid. Will it be any issue to make it to that appointment? I plan to spend the next day at the State Fair (my son is marching in the parade with the U of MN Gopher band). This prodedure doesn't cause any issues that will keep me from making it through a day at the Fair, will it?

CherylHutch's picture
Posts: 1399
Joined: Apr 2007

Wow... that's a lot of information to digest, Kathryn... I'm surprised your head isn't spinning! Like you say... the thyroid news is a double edged sword. No one wants to hear they have something that they now have to take medication for... on the other hand, it totally explains why you've been feeling off, tired, no energy, etc. And if the simple fix is some medication... then yayayaya!! It really is good news!!

As for the lymph nodes... so hard to say whether they are malignant or not, but the biopsy should prove that. As for how will you feel the next day, I'm afraid I can't answer that from experience. I've never had a needle biopsy of a lymph node before. But it sounds like it is similar to the RFA procedure that I had done on my lung. The difference being that they put me under a general anesthetic for that one. But, they use a needle, go right into the tumour (in your case the lymph node) and they zap the tumour with radio frequency waves until it's been so zapped there's nothing left of it. In your case, they put the needle into the lymph node and take a snip of it. They had told me, because of the general anesthetic, I would have to stay overnight at the hospital for observation, but I was so chipper and wide awake that they let me go home that afternoon. I was fine that night... and the next day, everything was totally normal. I could have definitely gone to a Fair or shopping or anything else. So my bets are that if all they are doing is going in and taking a snip, you will be totally fine the next day too :)


thready's picture
Posts: 475
Joined: Sep 2009

Hang in there! Get that thyroid under control, get the biopsy done and then move forward. I know you know yourself best but I am pulling for infection. If not we are here for you!
Take care,

Kathleen808's picture
Posts: 2361
Joined: Jan 2009

Hi Kathryn,
So sorry you are in the midst of this again. You are one tough lady but I can imagine that you would like a break.
Dick's situation was very similar to yours. After Folfox 12 rounds a lymph node popped up. He had the needle biopsy and it showed cancer. I went with him for that procedure and he was a bit loopy afterwards but was fine by the end of the day. No way could he have driven home. Then 12 rounds Folfori + Avastin and the node shrank but didn't disappear. His node was in the same area as yours. In May he flew to USC and a surgeon that works with Dr. Lenz took out a bunch of nodes. I hate to say it but only one of his nodes was large on the PET but he took out 17 nodes and 14 had cancer. They only had a bit of cancer so they think the Folofori was working. A month after surgery, clear scan and now Dick is on #6 of 8 for clean up. He'll have a scan in October when he is done and we hope for an all clear.
I'm thinking about you Kathryn and again, I am so sorry you're going through this again.


Posts: 827
Joined: Jan 2010

As I read your first paragraphs & symptoms I instantly dx'd you with hyperthyroidism. You see, I have been diagnosed w/Graves since 1998. Like you, the autoimmunity seems to run in my family. My daughter was dx'd with Hashimotos when she was 15.Come to find out lots of other relatives have/had it too.I'm so glad they found your problem because hyperthyroidism can be dangerous if left unattended.

I will be hoping and praying that all goes well for you and I am really sorry that you are having to go through this stuff again.


ktlcs's picture
Posts: 360
Joined: Jan 2010

That you have to go through all of this again, I will say a prayer that everything goes smoothly and the biopsy results are good news. I am glad to hear that your other symptoms were attributable to thyroid. While not great, at least you know what it is and can treat it.

Best of Luck and Stay Strong


Kathryn_in_MN's picture
Posts: 1258
Joined: Sep 2009

Do you remember how long they made Dick stay at the hospital after the biopsy? I have another appointment in the afternoon for my thyroid, and I really want to get to it - I need to get this under control because I can't stand the symptoms much longer.

So I've had the 12 rounds of FOLFOX, but that is where it ends.

Dick then had 12 rounds of FOLFIRI and Avastin, and then had nodes removed? And now he's on #6 of 8 rounds of mop-up? So he'll have 32 rounds of chemo when this one is done?

I do fine with surgery (other than the damn infections tied to port insertion and removal). But I didn't do so well on chemo. We're in a financial mess with my medical bills so high, and my business revenue down. I kept working, but rather than my usual 6 or 7 days a week for 12+ hours, I worked more like 40 hours a week, and I was slower due to Maybe I'll get lucky and something else is going on. My gut tells me otherwise, but although it is rare, I have been wrong before. ;)LOL

Posts: 3692
Joined: Oct 2009

You are one complicated lady! I am so sorry you may be back in the battle but am hopeful you won't. I think it is better to be ready for battle + not to have to go than to not be ready + have to go. You seem to do all the right things with this disease; you are very diligent in looking after yourself + addressing issues as they present themselves. The thyroid issue I know is very manageble; I havve family members with it too. I will be thinking of you + looking for your updates; I hope all goes well for you.

biglaur's picture
Posts: 72
Joined: Apr 2010

as well. I think it is a very common result of the chemo...not sure why more docs don't routinely test your levels. It's amazing how sensitive one is to the medication also. They keep tweaking my dosage...I can feel the difference between 112mcg and 125. But I feel a ton better when it's correct. I couldn't tolerate Synthroid (the most common med) so we settled on Levothyroxine. It's been "fun" getting it figured out :) I had a liver biopsy before I started chemo...they gave me the stuff where you're awake but don't feel anything or know what's going on. I needed to hold my breath for the surgeon so that's why you need to be awake. It was very weird...I talked to the nurse the whole time...she had a fist full of syringes and told me she could fix any symptoms I might get while lying there. I did get nauseous...so she gave me an injection and I felt fine. No pain, just weird tugging, and poking feelings. I went home after a few hours...but that night was pretty painful. Turns out they do a bunch of maneuvering of organs to get the needle in between ribs and not into the wrong spot. Once I had a pain med and put pressure on my side it subsided. I was ok the next day...just sore.
As to CT scans etc. I've had 24 of them, 5 PETS, 5 MRIs and gamma knife radiation. I think I glow in the dark...but the cancer is at bay right now so I guess that's a pretty good trade off.

lisa42's picture
Posts: 3661
Joined: Jul 2008

Hi Kathryn,

Wow, you definitely have a lot of news and things to digest here. I do hope and pray that the nodes that are swollen are that way due to something other than cancer. But, obviously, having already dealt with it, you've got to get back in fighting mode and deal with the idea that that could very well be what it is.

I mentioned on your FB post that my mom has Graves disease. It took a while before she was actually diagnosed w/ it. She had some other issues they thought were causing her symptoms. Since her diagnosis a little over a year ago, she is feeling good, heart palpitations stopped, she gained the weight back (she dropped down to 97 pounds at one point), and things seem under control. They've had to adjust her medication a couple of times, but it does seem to be under control now. She also has rheumatoid arthritis and Sjogren's syndrome, which are also both autoimmune diseases. I am always on the lookout for any kind of autoimmune disease in myself since she has them. Two of her first cousins also suffer from RA.
Anyhow, I'm glad you got the diagnosis, so they can keep on that and you'll feel better.

Take care- I am thinking of you and praying for you,


Sundanceh's picture
Posts: 4408
Joined: Jun 2009

Hi Kathryn

Just got my 3rd port in about a week ago now, in preparation for the next battle as well. Now, I've got that little or should I say bigger bump in there now. My first 2 were mediports and this one is a powerport...the upgrade looks to be worth it.

I know it sucks - I rubbed my chest the night before surgery knowing the next day I would transform into "hump man."

I'm sorry things are going badly...know you've got a good handle on the situation though. We're all in a bad dream that we can't wake up from:(

I am glad to see you, however:)


pepebcn's picture
Posts: 6352
Joined: Aug 2010

first of all sorry for the bad news despite there is still big chaneces
of cancer free.
My case is similar but in retro peritoneal nodes link.
Strategy gor theomemt is folfiri + avastin and monitorying , after that
radio or RFA .
Keep in to contraste , but sure you are celan!
best vibes!

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pepebcn's picture
Posts: 6352
Joined: Aug 2010

l don't even understand my own post!
Sorry it was sent from my iPhone ,a little mess!

Kathleen808's picture
Posts: 2361
Joined: Jan 2009

Hi Kathryn,
I've been thinking about you today and finally got to log in. Yes, Dick has 2 more rounds and that will make 32 rounds total. After his May surgery Dr. Lenz told him standard for after this surgery was 6 but since was so strong he wants 8. Trust me, after Dick finished the 6th today he said it sure would be nice to be done.
I think Dick was pretty tired all day after his biopsy. I am sure some of it was stress. He didn't have pain afterwards.
Sorry you're in the midst of so much.


John23's picture
Posts: 2140
Joined: Jan 2007

For interest and educational purposes:

Grave's Disease

I never cease to be amazed.


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