Got the CT scan done today (Recap of Lost Posts, Created by evolo58 on Nov 05, 2018)

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This recap includes posts that were lost during CSN's data outage from 10/29/18 to 1/30/19.

evolo58

Nov 05, 2018 - 12:37 pm

Got the CT scan just a few moments ago. PLEASE pray and hope that whatever caused the bottle-rocket CA-125 spike, it's benign and fixable.

I was looking at CA-125 elevations for ovarian cancer, which is very close to my type. For recurrences/progressions, the number seems to be 13%-20% benign causes. Since that includes all types of OVCA, I would presume that endometrial would be about the same. I really hope I'm in that percentage!

As far as I see it, there is still hope. After that, I will have to deal with whatever comes.

 

LisaPizza

Nov 05, 2018 - 12:40 pm

You're at the top of my list

You're at the top of my list right now

 

LadyMox

Nov 05, 2018 - 12:42 pm

I'm praying for you that the

I'm praying for you that the CA125 spike is benign. Do you know when you will get the results of the CTscan back?

 

evolo58

Nov 05, 2018 - 12:47 pm

Supposedly

At my gyno-onco appointment tomorrow.

 

Denise66

Nov 05, 2018 - 3:48 pm

Praying for you. 

Praying for you. 

 

derMaus

Nov 05, 2018 - 5:07 pm

Prayers, yes!

Praying for you. We all know how hard, and horrible, the waiting is. We're here with you in spirit. Be well, B

 

Armywife

Nov 05, 2018 - 5:35 pm

So Thankful

So thankful you don't have to wait more than a day!  Scanxiety is the worst.  Praying for a great doctor visit tomorrow.

 

evolo58

Nov 06, 2018 - 12:45 pm

I see three possible outcomes

I see three possible outcomes:

1. My bowels really did send the thing sky-high. I never will take passing gas for granted again ... it actually hurt when I did even that! #2s were a freakin' ordeal ... my pelvic floor and lower abodmen hurt. With dietary and medicinal changes, though, I'm finally back to normal. It could also be another body organ causing trouble. I have read of ladies here getting gall stones after treatment, and I did have an appendix flare-up, albeit mild, in May. It's pretty darn bad when some of us hope for gall stones or appendicitis! It might even be a combo. There were other physical and very-highly-emotional things happening, and all on or right before (as in a few days) the CA-125. (And it makes me wonder ... if an abdominal scan can elevate the CA-125, could two mammos within two weeks, including a very extensive diagonstic one a few days before, can? Good question! Google is not my friend here!)

2. The CT scan doesn't show anything. I read of a few accounts, including someone's here, where the person hit a spike (one was up to 500, so I DO mean a spike!), went for tests, and nothing. It started going back down the next month. 

This is good and bad. What, then, would have caused this in the first place? It's like seeing a rat scurry away and HOPING it's not hiding somewhere. And sometimes in this situation, months later, the person gets a recurrence. That may or may not be related to the spike ... no one knows for sure.

3. Well .... we can guess this one.

There are variations. From what I read, certain areas often respond better to treatment than others, such as the vaginal cuff. From what I read, if caught early, the chances of a good recovery can be promising. 

I have been asking everyone and his or her neigbhbor to pray for one or two. Even at almost 800, certain situations can cause a CA-125 to bottle-rocket. Heck, from what I read, even a sinus infection could make it rise to around 100! And that is just a sinus infection. #2 is worrisome, but at least buys me time. I know of one or two people IN a #2 situation with advanced cancers, and they are fine.

3 is what is the most worrisome, of course. 

If I have a 2 or 3 situation, I am going to seek a second opinion again with Dr. Expert (the one I wanted so, so much back then, but the hospital's insurance department and mine stuffed things up.) I am still red-hot angry at the incomeptence of various insurance entitites. I have a new insurance policy now, and hopefully, I can get another second opinion covered. I can't re-write the past, but maybe I can re-write the future just a litlte. I want the very best chance of addressing that rat issue!

But until I get those resutls, I am going to pray, pray, pray for a benign result. Thank you for praying and hoping with me. It means a lot.

 

MAbound

Nov 05, 2018 - 8:21 pm

Run, Beast, Run!

And I thought I was a professional worrier! You are so on top of things and considering all of the possibilities and what ifs. That beast better run because you're gunning for it!

 

evolo58

Nov 05, 2018 - 10:47 pm

Well, now I'm p*ssed off, too

Worried yes, but mad as well.

My gyno-onco has worked a little differently than many of yours. I had a TLH (total laparoscopic hysterectomy). Most Stage 4Bs, UPSC or not, get surgical. I had no lymph nodes sampled. I might have even been OK with the sentenial only ... but most of you advanced-stages seem to have at least that. Initially, there were to be no scheduled CT scans. Symptoms only.

It might be wrong to blame her. She's a well-respected physician. But to be honest, I have not been confident in some of her decisons, and now there is a nagging feeling that she might have messed up a little. I have no proof, since I know many gyno-oncos do believe in a less-invasive approach. And that last CT scan looked good.

Darn it, looking at many profiles here, there are many ladies diagnosed Stage 4B UPSC who HAVE lasted at least five years. Absolutely. And if this doctor made this goal more difficult for me, I am probably going to lose it.

One ray of hope is that many of these ladies had mutliple recurrences. And a few of these ladies have even passed ten years, or are approaching it, even with recurrences.

 

oldbeauty

Nov 06, 2018 - 6:33 am

Hope for a reassuring consult today.

I know the pre-consult anxiety of CT scans well.  I hope yours is clear today and you re-test well on your CA 125.  Although I have a different diagnosis to yours, I am alive 13 years after first dx and two recurrences, if that helps.  I, too, have doubts about my initial surgery not done to the gold standard and not by a gyne-oncologist.  I was declared "cured" and, it turns out, I was not.  Whether better node sampling would have made a difference, who knows at this point.  But that is water over the dam and the only thing you can do is forcefully assert yourself in future encounters.  I would say, though, that if you've lost confidence in this doctor, even if your reasons are not fully formed or even rational, you may do well to either get a new gyne-oncologist or obtain a second opinion on care if the need arises.  I changed doctors this year "merely" because I felt that the doctor and I irritated each other and I didn't feel like dealing with the personality tensions any longer.  Best wishes to you, Oldbeauty

 

evolo58

Nov 05, 2018 - 7:40 pm

Geez, Louise!

I know that masses, benign or malignant, can elevate the CA-125. Most sites list just a few. Here is a more complete list of just masses alone. WOW! https://www.cancertherapyadvisor.com/obstetrics-and-gynecology/adnexalpe... And I know there is more. Sorry about the messy paragraph. I used to be able to link URLs here, but my brain seems to be sleeping. URL or HTML doesn't seem to work, so I'm trying to use plain text.

 

NoTimeForCancer

Nov 05, 2018 - 7:54 pm

dear evolo, you are in my

dear evolo, you are in my prayers.  We are here waiting to hear from you after your visit.

 

janaes

Nov 05, 2018 - 8:49 pm

I hope you find good results

I hope you find good results at your appointment tomarrow

 

EZLiving66

Nov 05, 2018 - 9:17 pm

I am sending you good

I am sending you good vibrations and positive thoughts that this is just a blimp on your journey. Please, please, please let us know how it goes!

Love, 

Eldri 

 

CheeseQueen57

Nov 06, 2018 - 5:45 am

Thinking of you

Thinking of you. 

 

Northwoodsgirl

Nov 06, 2018 - 11:31 am

Evolo

I too am praying for a good result for you. 

Lori

 

zsazsa1

Nov 06, 2018 - 11:47 am

Evolo, I'm hoping it's not a

Evolo, I'm hoping it's not a recurrence.

Surgeons try to make the best decision they can, with the knowledge they have at the time.  Sampling of sentinel nodes is essentially for staging purposes, to see whether the cancer is out, not for debulking. In your case, it might have been a reasonable decision. I think that there are some surgeons who would have tried to debulk massively in your case - strip out all nodes, take the omentum, basically take out any and all possible loci of cancer.  And there are others who would say that the recovery from that would have been very difficult, that you could have had horrible lower extremity lymphedema for the rest of your life.  It's a really tough decision.

I, too,  have had doubts because I did not have a PET CT, and because they only took sentinel nodes, and did not do a massive stripping of the nodes.

Is there another large cancer center near you where you could go for a second opinion at this point?  Perhaps they could do another surgery if warranted, dependent upon the location of the recurrence, if that's what it is.  Combine that with stereotactic radiation (cyberknife), perhaps more chemo, and you could be back in a long term remission, possibly.  In addition, depending upon whether or not your tumor is her2neu positive, you might benefit from herceptin.

 

ConnieSW

Nov 06, 2018 - 1:59 pm

I am

in your corner.