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Good news....I think. At least it's not bad news.

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Just got home from my appointment with my friendly, local gyn/onc. We can't tap the fluid and test it because it's trapped in the hernia sac and they can't go thru the mesh with the needle they use for paracentesis.

On the other hand, because it IS inthe hernai sac, and nowhere else, it might be totally unrelated to Cancer - just fluid trapped in there during my hernia repair surgery. If that's the case, it will have disappeared by my next CT scan in Jan.

But he did agree to retest my CA125 in a month, just to keep me from having an ongoing anxiety attack, and because Dr S thought it would be a good idea. He (local guy) is totally unconcerned about it.

Pelvic exam was totally negative for any evidence of disease. All my girlie parts look and feel normal.

I have a hard knot under the skin of my belly, right where one of the lap instruments was inserted to repair the hernia. He said we need to "watch" it. I told him the surgeon who did the repair was aware of it (I pointed it out at my post-surgery check up). Naturally, I asked him what he thought it might be, all the while hearing my brain silently screaming "TUMOR." He said it could be a piece of the mesh that got rolled up, or one of the "screw" the surgeon used to anchor the mesh. Screws? No one mentioned hardware. Guess I will wait and ask the surgeon when I see him.

Carlene

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Nancy...

I had a bowel re-section and he is cautious about doing IP surgery right after a bowel re-section. Also, I had a very high pre-surgery CA125 (4000) and since his personal experience is that only about 40% are able to complete the whole IP protocol, he does not like to risk putting off IV chemo, which he claims would be necessary if we started IP therapy and I could not tolerate it. He says you lose time, getting the patient back up to a point where they can start IV chemo.

Carlene

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Hiccup!

srwruns's picture
srwruns
Posts: 343
Joined: Oct 2010

Great news! Keep the good news coming.

Cindy Bear
Posts: 560
Joined: Jul 2009

Good news. I am so glad... sounds like you might have a lose screw!! Hee Hee Hee...

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Glad to hear you got your local gyn/onc to work with you. Since you have the "ascites," the doc can justify testing your CA-125 sooner now.

This reminds me of that song where the guy tells a story about something that happened to him & the chorus says "Awww, that's bad!" then the guy says "No, that's GOOD!" and it goes on & on like that.

Life is strange...

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

I have a similar hard knot right next to where my hysterectomy surgery (2008) must have started, where they first stuck the scaple in or where they cut in particularly deeply. There's even an ugly 'dimple' by that spot of my belly scar. I don't know if my experience relates at all to the hard knot you have from the hernia surgery, but I thought I'd throw it out there anyway. I'm thinking scar tissue.

Sounds like EXCELLENT news from your exam!! Allow yourself to relax and be happy and beleive in your restored health, Carlene. You're doing so great!

cfont11
Posts: 115
Joined: Mar 2011

This is great news! I am so glad to hear that it may be unrelated to the cancer. We all know how stressful it can be waiting for CA125 tests but it is good that you are getting tested soon. You are so strong and such an inspiration to all of us, keep up you good attitude. I will pray for your good health.

Chris

jbeans888's picture
jbeans888
Posts: 313
Joined: Mar 2011

This is good, definitely not bad. Is the knot like the same thing as an adhesion?

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Probably not, since I just had the surgery in Aug and I noticed this immediately afterward. Adhesions take a while to form.

Carlene

kayandok
Posts: 1223
Joined: Jun 2008

the explanation of the fluid sounds reasonable.

I have had 6 abdominal surgeries (5 for OvCa) and for me, the scar tissue forms within the first month. It is like a hard knot under the skin. I always have then where they punch a hole in for the JP drains and on some parts of the incision, if not all of it. Sometimes it softens up and sometimes just remains hard. I think the scar tissue is what eventually does form the adhesions.

I'm thinking you have scar tissue, but if it is a tumor, wouldn't your CA125 reflect that?

In any case, it is good that your onc is going to do a CA125 again in a month.

Keep us posted,
kathleen

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Kathleen....

I don't think there is any suspicion that it's a tumor. I just had a CT scan and it would have shown up. The little guy is bigger than a marble, but just barely.

I was really surprised that the path report mentioned that my port had been removed, but did not mention the mesh that had been placed over my debulking incision and the hernia It had to have been a pretty good amount. The incision is about 14 inches and the hernia was the size of a cantalope.

I'm just going to wait for the next CA125 and see what it says, I guess.

Carlene

clamryn's picture
clamryn
Posts: 508
Joined: Jun 2010

Carlene, enjoy the good news. That CA125 is going to be good also. I know it is hard to keep it out of your mind but I know that you will get a good report on your CA125 and the CT Scan that is scheduled for January will be a good report too.

I love your proactive approach to all of this and I also love the fact that you challenge the doctor. Keep it up Carlene.

Linda

dreamer007's picture
dreamer007
Posts: 61
Joined: Jul 2011

my onc doc wanted to do IP chemo, but decided that was not going to work
with my funky intestinal fortitude...i have diverticulosis and ibs
i have been taking care of the intestinal problems without any surgery, and
do not want to go in for any more surgery, unless its unbearable pain, and
a significant improvement in what i can eat...plus, i do not want to **** into
a bag (pardon my french)
diet, supplements, meds for the gastro "issues"

AnneBehymer's picture
AnneBehymer
Posts: 739
Joined: Jul 2011

I have heard several of you talk about IP chemo. I am new to this cancer stuff and have been wanting to ask but did not want to sound like I am dumb. I have to know what is IP chemo????

Anne

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

It's short for "intraperitonial" chemo. It is delivered via a port that is surgically placed in your abdomen, usually during the debulking surgery.

It's sometimes called a "belly wash" because the chemo drug(s) are introduced right into the abdomen, on top of the cancer, so to speak. Some chemo centers even "swish it around" by rolling you from side-to-side.

It has shown good results, as part of first line therapy, but it's toxic as all get out. My doctor says only about 40% of his patients make it thru all 6 ronds of IP chemo.

Carlene

AnneBehymer's picture
AnneBehymer
Posts: 739
Joined: Jul 2011

Wow I think I am glad I am not having that done lol does not sound like fun. Well like any chemo is but you know what I mean I like just having to sit and do nothing while my chemo is going in I play cards Phase 10 mainly or games on my computer. I would not like having to be tossed around back and forth to mix it up lol. I am a large woman so that would not be fun. Thank you for sharing with me I had seen it talked about several times and asked my mom but she did not know either what it was.

Anne

annecris's picture
annecris
Posts: 44
Joined: Jan 2011

hey Hon - so glad things are going OK - I will be seeing Dr. S in NYC tomorrow - had my scan yesterday - I will let you know how things are - been feeling very good but had gone off choelsterol meds two months ago to see if i really needed them(since I had heard bad things about vytorin which i had been taking for a number of years) unfortunately my bad cholesterol jumped up to 278 and I was put on crestor a week ago - now having upset stomach and think it is the result of the new meds - will talk to Dr. S. about it tomorrow- keep the faith my dear Carlene - will keep you posted - Annie

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Hey, Annie....

Nice to hear from you. I hope your CT scan and labs are PERFECT.

Is the wedding over? I remember "October", but don't remember the date.

Carlene

PS...my next trip to NYC is in January. Frigid, icy, ugly, awful January. Not looking forward to it.

annecris's picture
annecris
Posts: 44
Joined: Jan 2011

Hey Hon - well news was not so very good - no longer in remission - c-scan shows that there is a very small nodule that has gotten bigger in my pelvis - good news is that it is contained and not spread anywhere - dr's at Sloan are not messing around with it - i have an appt. with my surgeon Dr. Barakat next Wed. to see if he can get it out laproscopicaly - but i will need chemo no matter what - not so extreme as first round - doxil and another cocktail of some kind maybe - CA-125 is at 36 - Dr. S. said I have lots of good options and there is an 80% chance they can get me back to remission quicky- so i said i would take that and run with it and make it happen - We can do nothing but not give up with this thing my friend - don't worry - it will all be good for all of us - Love You - Annie

Mwee's picture
Mwee
Posts: 1313
Joined: Nov 2009

Sorry it's taken so long to respond to this post/ I'm been chemoing... :). My ONC always says that he'll take a good pelvic exam that is negative over a CA-125 result anyday, but that the combo is all the more reassuring. (He probably means to me!)

I know how tough you are, but you had a huge operation just several weeks ago. I'm amazed at your speedy recovery...... and hardware? and trapped fluid .... no wonder you're feeling lumpy and bumpy. I had my gall bladder removed a year after my intial surgery with LAP instruments and I have those hard knots there. Teal bikinis are NOT in my future.
(((HUGS))) Maria

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