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LRM216

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Will be three years since my triple negative BC diagnose next month, and now I find myself goiing for a CA-125 test with my gyno tomorrow and have been given the telephone number of a very good gyncologic oncologist that I need to call and schedule an appt. with tomorrow.  I feel as though I am in a black hole with no light whatsoever.  Scared as crap.

It all started at my last gyno annual last June.  I have had numerous large fibroids for the last 20 years or so, totally without any symptoms or problems, so a hysterectomy was always ruled out.  She decided that since it had been 5 years since my last "hospital" sonargram and Transvaginal, she felt it was time to have another.  She always checks them herself, but her machine does not mark the actual size of each fibroid, etc.  So off I went.  Came back that one fibroid "may" have grown a bit.  Since I'm menopausal by 10 years this was a flag to check it our.  My fibroids are very large and gnarly, so doc wasn't sure if it was new growth or just a part of another, so off for a pelvic MRI.  Pelvic MRI showed no growth whatsoever (good) but did show a small amount of free fluid in pelvis that a woman my age would not usually have.  Also showed a tarlov cyst in sacro area which no one cared about at all.  Was scheduled for another sonar and tv in three months.  Had it, nothing changed - same amount of free fluid.  Had another two weeks ago (3 more months later) and the jerk that read that one decided I now had a "cystic adnexa mass" on left side - still small amount of fluid.  gyno did n't know who was reading them so she had all of the reports and scans given to her friend an interventional radiologist with a great rep to re-read. He said to have another pelvic MRI for clarity, which I did last friday.  He read it as it was being done and went over it carefully.  No adnexa mass - turned out to be a small pocket of fluid.  Cannot explain the fluid that should not be there, and remarked that it was a small amount more than the MRI in August.  He suggested waiting another 6 months to redo tests.  Gyno said no, she was e-mailing a renowned (in this area) gyno onc to see what they think.  Naturally - they think, since the ovaries are never seen due to the large fibroids, that perhaps they may have to look around in there, so I now have to call him tomorrow and make an appt. with him, right after I have the CA-125 with onc tomorrow.  Naturally, my mind is going towards mets to ovary(ies) and I am beyond frightened.  My Gyno keeps telling me that not seeing the ovaries isn't bad, as that means they are still small and hidden behind the large fibroids.  Yeah, good try, doc.  My reasoning thinks that if they are hidden all the time, who the heck knows what they look like?  There has to be a reason, and I'm sure not such a good one, that there has been fluid in my pelvis for these last 7 months.  So it appears I am on this rotten train ride once again.  I have no symptoms, no pain, nothing, but then again - that's why ovarian cancer is so sneaky and deadly.

Sorry this is so long, but I just know that anyone reading this can relate to my anxiety and fear.  My family, as much as I love them and they, me, just don't get the fear and anxiety I am going through.  I guess they just don't want to face it and I can understand that.  Soooooooo, if any of you have any extra prayers - I'll sure take them - in a heart beat!

Linda

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nosurrender

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Reply with quote  #2 
(( dear linda))
I am so sorry you are going through this and I didn't see your message sooner!
I always had a small amount of fluid in my adnexa. I suffered from ovarian cysts. I asked my sister who has been fighting fibroids for years if fluid ever showed up on her scans and she said yes.
I think this can definitely be a normal condition. If your ovaries are painful from the fibroids have you ever considered an ooph? I was always so dead against it. It was the best decision I ever made and one of the easiest operations too!
You have my prayers my friend!!!
love
g


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MicheleS

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Reply with quote  #3 
I agree with everything G said!!!!!!! Including the oorph....

I hope that you aren't dealing with cancer again... will be praying!


edge

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Reply with quote  #4 
Linda:

What you described is what's called free (peritoneal) fluid, or "FF", and although it can have many causes, incidence of association with malignancy is still small.  In a premenopausal woman, it is highly likely to represent normal physiologic FF from ovarian follicle rupture.  In postmenopausal women such as yourself, the most common suspects are suspected small bowel obstruction, early-stage appendicitis, or more rarely, cirrhosis, among other less likely causes.  Let's see what the experts and the tests all amount to, but a rough rule of thumb is that in the absence of serial significantly rising tumor markers (CA-125 here), the strong suspicion would be a benign source; malignancy would be more suspected if two, preferably three serial readings of CA-125 in a row were significantly rising, the criteria of significant increase I take to be a 25% increase of a CA-125 reading or greater over a previous reading, for three consecutive measurements.

In the meantime, although due diligence in differential diagnosis is essential, there is  no reason to supposed malignancy until we know the CA-125 tumor marker pattern and the interpretations of the other tests.



Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com


LRM216

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Reply with quote  #5 
thank you all, and much thanks to you Edge, I am eternally grateful.  Gina, I have never had pain in ovaries, no bleeding, etc, never even knew the fibroids were present, hence the gyno never recommending any type of hysterectomy, etc.

I saw the gynocologic-oncologist on Friday.  A Dr. Benedict Benigno, of Atlanta, GA, and he went over all tests so far and examined me.  My CA-125 was normal as was my CEA.  I might also add that in my almost three years of BC, I have never had ANY abnormal blood work or tumor markers at all - all my liver testing is always perfect, etc.  Of course, my last oncologist appt was late September, I am due to see her on the 20th, but all bloodwork was fine then too.  He feels I don't have a problem, but he wants me to have a CT on Friday (the 13th, ugh!) of the abdomen and the pelvis, as he said he wanted to cover every base and personally feels that the CT gives an even better picture than the pelvic MRI.  With my BC history, he would be remiss to not do this testing.  Naturally I am so anxiety ridden that if I could curl up in a ball and hide until all this is over - I gladly would!

I don't drink at all so I don't think I would have cirrhosis (???), no pain around appendix, and no symptoms of bowel problems (that I know of), but you have made me feel a lot better, Edge, with what you have informed me of above. 

CT is the 13th - my appt. with dr. is not until Wednesday the 18th, to discuss results of same.  I will keep you all posted (providing I don't hyperventilate to death first).

My love and sincere thanks to you all - and Edge - if my gratitude could be converted into money, you'd be a millionaire (or maybe a multi-millionaire??).

Linda

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edge

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Reply with quote  #6 

Linda:


Okay, so far so good.

 

Now as to anxiety, which understandable can be distressful if not altogether crippling, there are several CAM agents of  benefit to anxiety, but my favorite, and one of the  most powerful ever studied, with prospective human clinical pilot trial data supporting it, is highly standardized Melissa (Lemon Balm).  To be  optimally effective it must be standardized to 14% hydroxycinnamic acids and 7% rosmarinic acid (from Rosemary, and we know independent that rosmarinic acid is an anxiolytic), and the only preparation that  meets this strict standard based on the clinical  data is Cyracos.  Cyracos-standardized Melissa is  now sold under several commercial labels, all of which must display the  "Cyracos™ Lemon Balm Extract" trademark on the bottle, available affordably from Swanson Vitamins (Tranquilassure Cyracos Lemon Balm Extract; click). It may also be available locally under other labels from a well-stocked health food store, but again must carry the  Cyracos™ trademark to meet the optimal standardization requirements.

 

In the prospective trial of Julien Cases and colleagues (Dec 2011), although a small pilot study, 95% of subjects responded to treatment, of which 70% achieved full remission for anxiety, 85% full remission of insomnia, and 70% for both, and the spectrum of anxiety symptoms of agitation, hyperactivity, tension and insomnia were all improved significantly, as were secondary events of emotional instability, intellectual disturbances, and psychosomatic symptoms and speech problems.

 

We have human clinical data from other studies showing that Melissa improves cognitive performance and mood, reduces induced stress, and has strong anxiolytic effects.  The most powerful effects derived from a twice daily schedule, one tablet in the morning and another in the evening before falling asleep, but lower dosing may still be effective.  And these findings have cross-confirmation in the studies of David Kennedy's team at Northumbria University, among others. 

 

So: may be of considerable benefit. 




Thanks for the kind appreciation, and the whiff of lucrative "lucre" (is there any other kind?) but being able to help is  also rich reward all by itself.

 

Best fortune to you!



Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com

 

LRM216

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Reply with quote  #7 
Much love and thanks to you, Edge.  I am heading over to the link you so kindly gave me.  Sounds like I definitely need to have this on hand and to use it.  In addition to all the above, having lost my daughter (at 39  - "failure to thrive" due to years and years of many digestive problems), I have much anxiety and insomnia all relating to the loss of her.  I miss her dearly, every day.

Will keep you posted.  Much gratitude for your expertise, your caring and kind wishes.

Fondly,
Linda

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edge

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Reply with quote  #8 

Linda:


I am so sorry to hear of your loss, the loss of your daughter, and I know the Missing. The writer /poet Lisa Easterling expressed it well in "Mother' Love":

"I will go on listening
For her harmony
"

Best  wishes and faith with you.


Constantine


Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com

 

LRM216

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Goddess
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Reply with quote  #9 

Edge:

 

"I will go on listening
For her harmony
"

 

And so I shall, forever.  Thank you for the quote, it is beautiful.  Your caring knows no bounds, be it cancer research or human emotion.  What a beautiful man you truly are.  Stay well, dear friend, always.

 

L.


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MicheleS

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Reply with quote  #10 
{{{Linda}}} I am so sorry to hear about your daughter.  xxoo

Please let us know how your CT goes. WIll be thinking of you...

Calico

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Reply with quote  #11 
Linda,
prayers for you scan. Nobody can fathom the loss of a child.
A good friend of mine lost her 18 year old daughter and another one her son in a military training accident.
I will never be able to understand how one can cope with such tragedy and my heart goes out to you.
Sending you healing thoughts and I keep you in my prayers.

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LRM216

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Thank you so much, Michelle and Calico.  It's been the most difficult thing I have ever had to endure, even worse than the death of my husband many years ago.  Raising her daughter, and my sister raises her little boy, keeps me going.  I miss her dearly every day, but feel her presence within my heart.

Linda

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LRM216

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To Edge and all my other wonderful sisters:

Just wanted to let you know that I do not have any pelvic cancer (thank God), but I do have a small encapsulated cyst in the left adnexal area that will be looked at again in 4 months.  If more fluid builds (which he doubts) he will remove it laprascopically (sp?), and if it remains the same, it's my call to have it out or not.  Of course, I will choose to have it out. 

On the downside, and the gyno/onc sincerely feels it is just wear and tear and my age (65 next month), but a small sclerotic spot lit up on my lower spine on my abd/pelvic CT from last Friday.  I occasionally get a dull ache in that area if I am on my feet all day, or lifting and shoving things, etc. and have had this even before my cancer diagnose, so I am thinking it is just age related.  Of course, he now wants a full body bone scan, but assures me it will be fine (ummm, ok.. maybe I should have him buy lottery tickets for me!!). 

I want to thank each of you for your kindness and caring and support, and to Edge - the mere words "thank you" just doesn't cut it - I am eternally grateful for you and to you.  Will keep you posted on the bone scan.  Hope this is it for awhile - my emotions are raw, and my pockets are getting emptied really fast with all these tests/copays!!

Wishing the best to all,

Linda
 

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MicheleS

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Reply with quote  #14 
great news!  when is your bone scan?
Calico

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Reply with quote  #15 
Linda,
I'd call that great news. Do the bone scan (ha, says the ceiling fan resident )
On the cyst, why do they always wait and see? I'd get it out....it is sort of obsolete anyway...if one is healthy of course to go through surgery.....I think we should come with zippers installed

Raising little ones can be such joy....DH keeps telling DD that he wants 5 grand kids....at least....only one problem....he does not want her to date hahaha......that's dad for you!!
Best wishes for the bone scan and prayers too!!!

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Reply with quote  #16 
((((Linda)))) great news!!!!

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LRM216

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Deep, deep thanks to you all.  Tomorrow a.m. (tuesday) I will be having the bone scan.  Saw my onc last thursday for my regular 4 month visit - and all appears to be fine.  She set the bone scan up for me.  She too thinks it will be "wear and tear," but since it was only an abd/pelvic CT, I'm hoping no other bones areas show up "slerotic."  Will let you all know as soon as I find out.

Love to all,
Linda

Edited to add:  Calico, yes, I see the onc-gyno again May 21st, and will have the sonargram and TV shortly before that visit.  If it's grown, he plans to take it out.  If it remains as it has all these months, he said it was my call.  I "call" that it comes out laparoscopically, as he said.  I don't want to spend whatever time I have having 3 month sonargrams and TVs.  I'm beginning to feel as though I am a butter churn everytime I have that dang Transvaginal thing.  Ugh! 


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MicheleS

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Reply with quote  #18 
lots of prayers that your bone scan is boring!!  xxoo
nosurrender

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Reply with quote  #19 
Linda hope all went well!!!

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LRM216

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Reply with quote  #20 
Gina, Edge, Calico and Michelle,

Got my results back from the bone scan today and it was clear, and I am profoundly relieved and happy to hear that, as you can all well imagine.

I want to thank each of you for being there for me during these most horrid of weeks with all the testing, leading to more testing, etc., and the anxiety produced by same.  I couldn't have done it without all of you.  I am eternally grateful and will always be.  Wishing you all, nothing but the best of the best.

Love,
Linda

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