98%

I may have asked this question before and if so I know you all answered....but to be honest the last few weeks have been a blur to me.  So forgive me if Im repeating myself.

Anyway, the doc said after my moms surgery that he got 98% of it out....or I guess 98% of whats visible - with some specs remaining.  My question is.....do they usually say they got it al out (what they can see)?  Or in many cases is it less than 98% because of where the cancer is located?

I saw a counselor yesterday and chatted and was told Im normal in how Im feeling and that a lot of it is stemming from guilt because of my perception of not being a good son.  And also, because I want my mom to be ok and happy and healthy.  I will start going to a support group soon, because Im falling apart.

Thank you for listening and for being there.

[gah_70]

Hi Concerned,

Thought I would add my two cents' worth on the subject.  I'm 35, and was diagnosed with stage III C OVCA 6 months ago.  I had a TAH, the omentum, and 12 inches of large intestine removed during surgery.  My tumor was large...44 cm and 40 lbs.  My doctor got 99% of my cancer in surgery.  What was left were "specs" as you say, on my diaphragm.  I started chemo three weeks after surgery, and finished my 6th cycle 11 weeks ago.  My cancer responded well to chemo, and so far, my CA 125 is holding steady at 19, and my follow-up CT shows the all-clear.  I wouldn't want to compare my experience to that of your mother, but it sounds like there are some similarities.  My doctor has never been anything except optimistic.  Chemo was tough, but I feel so much better now.  Has your mom started chemo yet?

[xrayu2]

I would say that 98% is the best and most honest answer that you can get.  If a doctor would tell you 100%, he would have to be fibbing a little because he does not know what is there microscopically.  I would say the specks left will taken care of with the chemo.  I, too, would be in a blur if I were to be dealing with this with my mom.

[ConcernedInNY]

Hi Xray....but is 98% typical?  Is the surgery part considered a success?  I was hooing he'd be able to get all VISIBLE cancer out.  I know 100% is not realistic - like u said - they cant guarantee with the cells being microscopic and all.
I hoe those specs will be taken care of with the chemo.  Im going to be greedy - I want 10 more years with her. - well I want 20 but at this point Id settle for 10.  My reasons are partially selfish because I love her and need her in my life.  I always knew I loved my mom - but lately my heart has been overwhelmed with love for her.  She is truly a remarkable woman.

[xrayu2]

I would say 98% is better than some.  I have seen some women that are having treatment after debulking surgery that have a considerable sized tumor left because it was attached to  vessels or inoperable areas.  I would it this  is better than average if I had to guess.

[MickeyVicki]

No, 98% percent is not typical for an advanced cancer.  98% is exceptionally good.  Often when cancers have spread, the malignant sites include organs and tissues that cannot be reached or which cannot be removed as doing so would kill the patient (an example is the liver.)  Of the people I've known with cancer, only the ones who were marginally Stage III had surgeons who could attain this degree of debulking.  As I wrote before, your mother is off to a good start, and if she tolerates the chemotherapy well, and her cancer responds to the chemotherapy, then she should be around for a while yet.

How is your mother responding to her disease?  Is she taking it well (as well as one can in this situation), and preparing herself mentally to fight the cancer?

[ConcernedInNY]

Hi Micki,
In my opinion my mom handled the surgery exceptionally well.  The surgery was under 3 hours and when I saw her in the recovery room she looked surprisingly good.  In about a week she looked and sounded like her old self.  There has been a day or two that she has looked incredibly exhausted and drained, but I think its understandable given the emotional and physical strain she has gone through.....and the surgery was a major surgery and factoring in that she is almost 75 years old, I think she did great.  Her spirits are very good....Im not sure if she is putting on a brave front for us or if she is truly drawing on her inner strength, but emotionally, she is handling it beautifully. I know she broke down and cried a few times in the beginning and maybe she is still crying privately now. I am very proud of her...she is a good, gentle soul, and this is the first time I see her as being strong....maybe it was there all along and I just didnt see it.  She wants to get her chemo done because, as she says, "I want to put this behind me".  She keeps saying thank God its her and not one of us kids....and she means it too...but she isnt worth any less than anyone else.  If a will to live and love and support from the family and her love for us count for anything, then I think she has a major plus in her favor.

Hi Raven,
I am not strong...Im weak...but I know when I need help and need to talk and Im not afraid to go get counseling if I need it.  Im feeling a lot of guilt because I always took my mother for granted.  I always knew I loved her, but growing up I wasnt always very nice to her.  I apologized to her recently and she told me there was nothing to forgive...basically she told me Im a boy and boys act that way sometimes.  I know just about everyone loves their moms, but my mom truly is one of the most selfless people I know.  She's a caregiver and is always worried about everyone else - even above herself.  I know life isnt always fair, but Im begging God to please spare her this.

Micki I hope you are right that she is off to a great start and that with a good response ot chemo, she will be around awhile.

The doc did say that the chemo is very effective against this type of cancer as opposed to other cancers...but if its so effective, why do the stats really stink?

[ConcernedInNY]

Hi Gah.

Thank you for sharing your experience.  How long did your surgery take and what was your pre-surgical CA-125?

You sound like a fighter.  Youve been through such an ordeal for such a young woman.  It does sound like you have a good doctor and that youre on the right track.

My mom has a consult with the chemo doc tomorrow...I think she starts treatments next week but Im not sure.

Thank you again and I will keep you in my prayers.

[AnotherKatie]

As far as boys and your guilt about the past goes:  
Listen, I was a special ed teacher and I was a great mom, and my two boys each in their own turn, were little buggers to me around the ages of 15-20.  The stories I could tell you, yikes.  It seems to be a boy's job to be horrible!  It is part of growing up and trying to cut the apron strings. Your mom, like me, would never ever ever want you to waste time or emotional energy feeling guilty about "junk" from the past.
Stuff happens.  We forgive.  Moms forgive ANYTHING, trust me. That is OUR job! We just love you guys. Period.  We understand life is tough.  Now, I have the sweetest relationship with my guys, that is even better because of what we went through, and I know they love me.  We have talked it through, it is forgiven, and it is done.  Many young men in our society feel anger, and, often they turn on or transfer their anger onto someone they know will still love them unconditionally.  You are only human, all you can do is be strong and loving to her TODAY!  Don't beat yourself up.
Love and prayers for you and your mom, Katie

[ConcernedInNY]

Milashka dont answer my question...I saw your respons ein another post.  Sorry I didnt remember at first....I havent remembered much of anything lately.

I know you said its a coin toss but it sounds like u had a successful debulking surgery and youre responding incredibly well to the chemo...I would tend to think this tips the scales in your favor more than the 50%.  Keep up the good work and we all look forward to hearing about your continued improvement.

[gah_70]

My surgery took about 6 hours.  As I said before, the tumor was very large, and they had a lot to do once they got in there.  I ended up with a 10 inch incision that took about 85 staples to close.  My family was told during surgery that I would have to have a colostomy, but my surgeon ended up being able to ressect the colon, and now that it is healed, I don't even know the difference.  My pre-surgical CA 125 was 3053.  But even with tumor as large as mine, and with a CA 125 as high as it was, I still had no symptoms, other than the bloat.  What brought me to the doctor was a hernia, which I found out was caused by "Gertie", the name I chose for the "thing" that was in me.  You said your mom had no symptoms, and it was found during a routine appointment, so I say we both consider ourselves lucky, and not think of the "what ifs" had we not seen a doctor when we did.  This disease is ugly, but the great part is both your mother and I caught it, and have the chance to fight it.  I'm glad your mother has a good doctor, and is getting her on the right track, as well.  

You and your mom are in my prayers, and I hope you find strength and healing along this journey.

[CindiSue]

See, Concerned, I told you the very same thing a few days ago. We mom's love you goofy boys no matter what! I've been reading all your posts and you seem to be getting a better grip on this thing. I wish you and your obviously tremendous mom and the rest of your family as smooth a process as possible. Just remember what us other wise mom's have told you and don't fret on the past. Try to think positively..."Worry is a waste of a good imagination!!!" Instead think of all the great times you still have ahead with your newly healthy Mom! THINGK POSITIVLEY! I will try to do the same!   Cindi

[MickeyVicki]

You have to remember that the statistics "stink"  because the numbers include ALL women with the cancer.  This fact means that the statistics include women who are very elderly, like my friend's 90 year old mother who died of ovca less than one month after diagnosis; the woman decided it was time to go, advised her family of the fact,  and died in her sleep after her first chemo treatment.  The statistics include women who already had other, often severe, health problems which made the chemotherapy regimen difficult or impossible to bear.  It also includes  younger women who just "give up" and decide not to fight the disease, or who do not follow the doctors' recommendations for treatment.

[CindiSue]

Some other thread had a good thought on the "stats", too. It noted that the stats for a 5 year survival rate were dealing with women who were treated with 5 year old research. So by the time we have it there has been 5 years worth of progress and we won't know the 5 year stats on that new research for another 5 years. We could be at much better odds than we even know yet. I guess WE are the ones they will talk about in 5 years.

[milashka]

CindiSue, that's right, that was my post...basically, we newly-diagnosed are the statistics of 2010.

Concerned, from what I have heard, and from the way my surgeon was all psyched up after my surgery, I understand it is NOT common that all cancer can be removed. My surgeon was able to remove all visible cancer 100% or so he says (and 98% is close enough!). My friend says he was flying high after the 3-hour surgery. He made it clear though that without chemo, the cancer will return 100%. The chemo is to get the invisible traces of cancer...the "grains of sand" floating around from the ascites etc and whatever is in the bloodstream.

I have read that a successful initial surgery is more important as far as favorable prognosis goes than response to chemotherapy. I also heard that if the tumor marker drops by more than 50% after the second chemo treatment, that is also a good sign.

My tumor marker dropped from 946 pre-surgery to 19 after chemo treatment no.2. My oncologist was and still is very, very happy about that. I also had a great surgery. So things are looking good for me. Still I am very worried because there is always that chance of it returning...it's a wicked cancer. Statistically, my chances of even getting it at age 42 were 1%.

I think so far things could not look any better for you mom under the circumstances. I wish her luck with the chemo. I am allergic to a lot of regular drugs like penicillin, and always was very pure so I was sure the chemo would kill me. But not only did it not kill me, I am tolerating it very well. It is not pleasant but not nearly as hard as I thought. Each one is different, but they have great drugs to counteract the side effects.

Please keep us posted on your mom's progress.

[ConcernedInNY]

Hi Milashka.

Thanks for sharing your story and for the encouraging words.  It sounds like you are doing very well...keep up the great progress!

Your CA-125 sounds very high...may I ask what stage you were in when diagnosed?

They said they got 98% of my moms cancer out....some specs are remaining...not all microscopic...some were visible - I guess they just couldnt get to it and thats what the chemo is for.  But even with the chemo the doc seems very encouraging, though of course not guaranteeing anything.

Thanks again for sharing and best wishes for a speedy and continued recovery.

[ConcernedInNY]

Thank you, Katie.  That was a very nice post.  I believe you are right.  Its just hard for me to understand...maybe if I had children of my own I would better comprehend it.  You sound like a great mom yourself!

[novakof]

I read a post in another forum that a woman was diagnosed as stage IIIc ovca.  She said that she had debulking surgery and the doctor removed 85-90% of the cancer.  She seemed to think that was good.  Your mother's surgery must have gone extremely well.

[milashka]

Concerned, don't get hung up on the specks that are left. They are probably less than 1 cm in size and that is considered okay and still optimal. With 98% gone, it went as well as it could.

You are right, things are looking great for me and my doctor's excitement reflects that. The response so far and the fact that I am young made him cautiously up the prognosis...last time he said he thinks I can beat this...but I know he cannot really mean it. I think 50/50 is a very realistic prognosis.

There is a great new book out by John Hopkins Clinic called Survivorship for Ovarian Cancer or so. It is a little scary but I always want to hear the facts...it's pretty up-to-date. They say that even with optimal surgery or even complete cytoreduction (that's what your mom and I had I suppose) and response to chemo, the cancer can return. So who knows?

Right now, I am bloated again and it really worries me. Will talk to him on Thursday to see what he thinks.