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Likely UPSC recurrence - lymph nodes light up on PET

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

Hi ladies,

I'm bummed. It has been a stressful month. Got the word from the doc today regarding PET done last week. He is recommending surgical removal of left subclavian lymph node. Rest of PET scan was negative!!!

I cried when he told me the CA 125 was up at my last checkup begining of April- thinking the worst of course. I hate this!!!!

it's funny that Linda, Ro, me, and I think Diane all had recurrences after great vacations!!! Maybe that should be a research topic.

Please send your positive energy and prayers my way. Thanks for listening.

Love to all, Mary Ann

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

So sorry to hear of hot spot/ lymph node issue. I also came back from a great vacation then had my reg ca125 last Aug. It was elevated, then CT scan showed para aortic lymph nodes enlarged and hot spot on PET, with positive biopsy in Oct. Darn!!!! No more fun vacations??? I think not.

But only one spot!!! Hopefully it is a fairly easy access for removal - most likely since that is rec.

My thoughts are with you. {{{HUGS}}}
Annie

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

Maryann, maybe the node will biopsy negative and you'll feel silly for being so worried! Could happen!

At least we all squeezed in some BIG FUN during our remissions, and we'll all keep DOING that every chance we get! Please stay in touch and let me know what they recommend. If they mention trying that weekly fractionated taxol, give it a whirl. It only took 10 weeks before that shot me back into remission. Please ask about that Megace my chemo-onc is pushing; I am inclined to not take that, honestly, but would love more opinions on it.

I know your heart-broken disappointment. I'm so sorry that you both have this new bump in your cancer journey road. Deep breath. Once the shock is over you'll get your game face on and be battle-ready once again. It SUCKS, but it is what it is. (((((((HUGE HUGS)))))).

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

I am SoOOO sorry to hear about your big bump in the road! What a bummer!! I am sending positive energy your way along with HUGE HUGS!!

Mary Ann, what prompted the PET scan? If I remember correctly, your follow up did not include routine scans unless you had symptoms? Or was it because of your elevated CA125. That make me nervous as CA125 is NOT a marker for me and my gyn oncologist does not do routine scans due to the radiation risk unless their are symptoms. Seems I could get down the roader further than I would want!! I will bring this up when I see him in a couple of weeks!!

Please know that I thinking about both of you and PLEASE keep us posted on what is happening with both of you!! I know you are bummed, but keep taking as many vacations as you can...we deserve that!!

Karen

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

Hi Karen,

Thanks for all the good vibes and caring. I found a lump in my neck. That plus the elevated Ca125 (41) prompted the PET/CT. I have to credit my doc for fighting for it when Aetna denied. He got it approved in less than a week. Even though I am P0'd about some things, this was phenomenal.

The CA125 is so illusive. I remember my doc saying "it's only reliable when it's high". Hence the angst I am having. I did have a repeat this week and I'm anxious to see if it's holding or going up more. I'm waiting to get a surgery consult - this ticking time bomb is for the birds!!!

Blessings to all, Mary Ann

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

My CA125 jumped to 155 when it spiked. 41 is still pretty low and could be a lot of other inflammations besides cancer progression. If the tumor is less than a centimeter, PET scans can 'false-positive' about 45% of the time, I've read, when compared after biopsy. They are reliable only for tumors larger than 1 cm. How dangerous or invasive is the surgery?

Will you be fighting for live tissue assays? I can't encourage that enough!! Aetna will likely fight you on covering the assays so make sure you can get pre-approval as they are expensive. But FIGHT for that so you know what you aredealing with and what chemo is most apt to WORK for your unique cancer!! If I ever have cancer surgery again, I am sending out my tissues for assays to John Hopkins:
http://pathology.jhu.edu/researchbrochure/division.cfm?id=8
specifically to Dr. Robert Kurman, their world famous gyne-pathologist. John Hopkins offers consultative diagnostic interpretation of pathologic material concerning all diseases of the female genital tract. This service is offered for practicing pathologists desiring assistance with difficult cases, as well as for gynecologists and patients wanting a second opinion. BonnieSue phoned me and recommended Dr. Kurman.

(((((HUGS)))))

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

You are a wealth of info. Actually the lump is 9mm - just shy of 1 cm!!! I hope it is a false positive.

I think it is relatively easy location. It is palpable and moves - my doc did not seem worried when he first felt it. He's referring me to ENT so I'll find out soon I hope.

Yes, I will fight for the assay - I had this the first time and had no trouble with coverage. Thanks for the names of those experts.

I will definitely keep you posted. It's funny how I missed you all but, like you Linda, I didn't want to burden others with what I thought was bad news. But you all are so awesome to "talk" to - it's like being HOME again. This cancer thing really sucks!!!

Blessings to you all. Mary Ann

bonniesue
Posts: 126
Joined: Apr 2009

Sending you positive energy and hoping and sending prayers that it may be an infectious thing.

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

Sending hugs and prayers your way....we are always here for you!

Laurie

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

Hang in there Mary Ann. 41 is low for CA 125. I agree get the molecular assay done if possible. I know it's not perfect but helpful.

I am coping with recurrance better than I thought I would. I still cry; sometimes at night when my husband kisses me good night I just cry and cry. But then I clear up. It helps not hold all the emotions inside.

We care about you. Remember: "Women are like teabags; they don't know how strong they are until they get in hot water."

Positive energy floating to you and wrapping around you and caring about you.

Diane

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

XOXOXOXO - many thanks. You all give me hope and strength. Love you. MA

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

I hope that the enlarged subclavian node ends up to be nothing. But I can understand how stressed out you must be. Did you have another thread yesterday about the enlarged node. I responded to it, but I don't see it today.

When is your surgery going to be? I pray that it will be soon and give you good results.

My CA 125 went up to 39 at my first 3 month check-up after finishing chemo in August. As you know it has been slowly creeping up with the last reading at 120. I have three suspicious areas, one in the subclavian area, one in the lung, and the other in the para-aortic area. I keep hoping the areas will not increase in size, and that my CA 125 is stabilizing to a new normal for me.

You remain in my prayers. Hopefully sharing your story has relieved some of your stress. We don't want you to keep things to yourself. In peace and caring.

fuzzytrouble's picture
fuzzytrouble
Posts: 213
Joined: Feb 2009

That's why I come here to share our issues and good news and share all the icky stuff that's going on with us. You are not burdening me that's for sure, I am sending you all the good vibes I have to you and give you my best wishes.

Lot's of hugs to you from me too

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Hmmm. That's interesting Mary Ann. I went on my very first cruise in September. I had a biopsy taken October 1st which came back positive.

Sorry that you are having a stressful month. Sending hugs your way!

Kathy

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

Sending you positive energy and prayers.

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

You are all so awesome. Thanks from the bottom of my heart.

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

The low CA125 should be reasurring! That doesn't sound like a recurrence to me. My Ca-125 spiked to 155 when that lymph node lit up in my armpit. (((Hugs))). Try not to worry!! I really think you're okay here!

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

Yup....I agree with Linda....I think you you are going to be just fine!! Will await your update!!

Karen

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