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Unofficial CT/PET scan results and official CA125

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Well, not the news I wanted but it could have been much worse. My CA125 went up from 24.6 to 53.9, and 2 of the 3 lymph nodes that had disappeared on my last CT/PET lit up again. (sigh)

The news on my scan is unofficial, but here's what I learned: The para-aortic lymph node that lit up is really tiny and wasn't even measured. The lymph node under my arm was 1.0 x 1.3 cm and lit up a bright SUV of 7.8. The weird thing is that I can't even feel anything under there with my fingers, and cancerous lymph nodes in the armpit are always hard, I've read. I was told that sometimes when the same nodes light up off and on that they may just be nodes that are easily irritated. I don't know. Maybe I'm just grasping at straws here.

I see my chemo-onc Thursday for my official review of the scan and his recommendations. I see my gyne-onc Monday for his recommendation, although we already talked about the various possible scenarios when I saw him last week. My gyne-onc said if only really little nodes lite up and only 1 or 2, he would still be inclined to have me do nothing and just be monitored for a couple more months. (We'll see if these 2 little lymph nodes meet his definition of 'really little'.)

Earlier we'd talked about doing surgery and removing a node if that was possible this time, and try and get a physical confirmation if this is really a recurrence. I think I'd like him to cut out that node under my arm if it is large enough for him to even FIND it in there, and biopsy it. I figure if it's cancerous, well then I've cut the cancer out of me. And if it's not, I'm not going to worry about that other node in the para-aorta that lights up 6 months ago, doesn't light up 3 months ago, and lights up again now. I looked up the surgery to remove the armpit node and it's just a fast in-and-out surgery with a few days of drainage and discomfort but no biggie. & I want to have live tissue assays done and sent to John Hopkins if I can swing that.

& I'm going to see if I can get some antibiotics or anti-inflammatories before my next scan.

Naturally, I'm bummed. But I'm not stunned and heart-broken or anything like that. I'll let you know what my 2 oncologists say, and I'll be surprised if they agree.

nempark
Posts: 683
Joined: Apr 2010

Hi what ever it is you will take care of it. I pray for you and constantly look for your posts. You can do it. I know you can. Keep strong and continue to keep us in touch. big hugs. June

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

I feel your sadness and wish you positive vibes... Know we're all pulling and praying for you always. You're a neat lady and deserve good things in life. Just a little turn in your path, but know you'll be back to full tilt sooner than later.

Keep us posted!

((((( hugs )))))

Jan

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I am sure you are bummed. Me too, for you. Will be anxious to hear what your doctors recommend. I hope the two lymph nodes will just need monitoring. I know you will consider their recommendations carefully and make your decision of how to proceed. You remain in my thoughts and prayers. In peace and caring.

Always Hopeful
Posts: 234
Joined: May 2010

Prayers and positive energy coming your way, Linda. May Thursday and Monday provide you with the information you need to make your next decision.

If it's not raining where you live, take a slow, meandering walk through your beautiful gardens to brighten your day.

Peace and hope, JJ

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I am thinking of your and sending you lots of positve thoughts. Keep your chin up, my friend. Sounds like you are. I hate it that there was something to give you concern. May it be a fluke. Hopefully, will rise to the occasion and make those lymph nodes shrink. Praying for you.

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Sending hugs...keep the info coming...

I have my CT scan today...so all good thoughts and prayers are appreciated!!!

Laurie

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Linda, I am so sorry that you did not get the results we were all hoping for. I know you will learn a lot more after you see your Drs. Will await your update!

Sending you warm thoughts and big hugs! Karen

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

linda,

i'm sorry and pissed that you didn't get the results we all wanted for you, still i'm so glad you're not stunned or heartbroken, and i do see it could have been a lot worse. i do think it's possible with such variable node results that something other than cancer could be going on. are you thinking of taking antibiotics or anti-inflammatories before your next scan to mitigate against the possibility of easily irritated nodes lighting up?? that would make sense.

there are still a lot of questions to be answered now about those nodes, and i'll be waiting for your posts after you see your respective doctors to hear what each thinks. i think, if it were me, i might well be inclined to go for the node under the arm surgery; would give you several answers in one procedure, and get it out if it's cancerous.

it's good to know we can count on you to stay in touch. know that you're in our thoughts.

sisterhood and hugs,
maggie

clscurnutt's picture
clscurnutt
Posts: 26
Joined: Nov 2009

Sorry that your news was not great. Hope that you have a more positive response on Thursday and Monday. I don't blame you for wanting something removed instead of just watched. Same way I feel about the cysts found on some of my abdominal lymph nodes at my last scan.

My thoughts are with you.

Lynn

MoeKay
Posts: 205
Joined: Feb 2004

Hi Linda:

I pulled out my pathology report to see if it discussed the size of my lymph nodes. Here's what it says: Right paraaortic nodes ranging in size from 0.4 to 1.0 cm. Left paraaortic nodes ranging in size from 0.6 to 1.4 cm. Left pelvic nodes ranging in size from 0.4 to 1.2 cm. Right pelvic nodes ranging in size from 0.6 to 1.6 cm. Left obturator nodes ranging in size from 0.6 to 1.5 cm. All 30 of my nodes were negative, so, at least compared to the size of my nodes, it doesn't seem as though the node under your arm is that large. I will be interested to hear whether your doctors agree.

I like the idea of getting the node under your arm removed and sent to Johns Hopkins along with the slides from your original surgery.

Keeping my fingers crossed for good news at your appointments today and Monday.

Be well,

MoeKay

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Linda, Sorry for the rising CA125 and lymph nodes acting up on you. I certainly can relate to that. Check with your doc about how much tissue is needed for the assay. My node was 9mm and I was told not enough tissue for assay though they did pathology on it.

MA

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