Likely UPSC recurrence - lymph nodes light up on PET

So sorry to hear of hot
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

Mary Ann and Annie
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 said:

Karen
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

41 is still a pretty low CA125.
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 said:

Thanks Linda
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

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

daisy366 said:

Thanks Linda
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

Continued Stress
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 said:

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

So sorry to hear your news Mary Ann
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.

daisy366 said:

Thanks Linda
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

It's no burden
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

lindaprocopio said:

Congrats on the low CA125!
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!

Am counting on that, Mary Ann!
Yup....I agree with Linda....I think you you are going to be just fine!! Will await your update!!

Karen