READ THIS! Was scheduled for chemo tomorrow

Well, as you know, I was diagnosed with a 1st recurrance last week from a CT scan (2 cm tumor in abdomen).  CA 125 was 8. (CA125 has always been a good tumor marker for me in the past so this puzzled me a bit).  Onc at MD Anderson indicated she was positive it was cancer by the way it felt (hard) during a pelvic exam and by how it looked on the scan.  She scheduled chemo for tomorrow and ordered a biopsy for formal confirmation.  Today she called me and says the biopsy came back negative.  Her peers recommended a second biopsy but she says the lab already did two: when I went in for the biopsy, they took out samples, had me wait a while while they checked it, then said they had to perform the procedure all over again with a different size needle.  It really hurt a lot and I was not happy.  My onc said they used the first sample to do the pathology test; it came back negative so they went ahead the next day and did tests on 2nd sample, same negative results.  She thinks it could still be cancerous but says she is "cautiously optomistic" and a bit baffled as to what this could be.  Wants to CT scan it again in three weeks.  I think the hand of God is really on me (and have always told her this).  I asked if the biopsy tests could be wrong and her response was "NOT at this hospital and not twice!"  What do you guys think and what would you do?  My cancer is grade 3 and in the past very fast growing.  Thanks as always for "listening" and for your support.  Rachael

[RavenLady]

Hi Racheal,
     Guess the first questions that occur to me is "why isn't your case be handled entirely by your ONC and the second is, "why isn't surgical biopsy an option before chemo especially given the results?". I don't blame you for being frustrated!  MV

[SimplyStar]

I like it that your ono went to her peers, if the needle biops came back neg, then would a surgical biop show any different.  We all know that most cancers are only truly dx after surgery, But in the case of 2 needle biops, and a low CA125 then I feel you need further proof that ca has indeed invaded you again. If this does turn out that no chemo is needed then YES Praise God.

[RAS50]

Ravenlady- my onc is handing my case.  MD Anderson- and most major cancer centers- have regular conferences where the oncs present patient cases for additional opinions/ advice and this week my onc presented my case.  All recommended that I wait 6 weeks for another scan.  I have asked three times about surgery and have been told the same thing by 2 oncs- MD Anderson rarely does surgery for recurrances (unlike Sloan in NY; my onc called this a "hospital bias"); MD Anderson's opinion and experience is that it does not improve prognosis nor extend a patient's life span.  My onc told me today that she thinks the tumor is too close to my bladder to remove it and feels a "watch and see" approach is right now the best option.  She originallly wanted to scan it again in 6 weeks, I told her I'd prefer 3 and she agreed. I will keep asking about this; intuitively, I want it OUT!  But I must say, my faith is very strong and unlike when I was first diagnosed, I feel very much at peace that this is going to be okay.  Rachael

[Jatoo]

"The incredible thing about miracles is that they do happen.", GK Chesterton

[Christa54]

Rachael, I just want to say that I believe God's hand is on you.  I pray that this turns out to be nothing serious and that you continue to stand strong in your faith!

Christa

[freshair]

Rachel,
Such wonderful news! What about a PET/CT scan in that area?
Helen

[rmarie]

I'd go dancing - and I am not a good dancer.  that is great news.  One thing I have been learning is Onc. are not encouraging unless they really believe they can be.

[RAS50]

You guys are just awesome- I do beleive in miracles!  Thanks and will keep you posted and in my prayers.  James 5:16 says "pray for one another that you may be healed".  We need to continue to pray for all of us- there is real power in this!  

Helen- how much different is a PET scan than a CT scan (I get the latter from my hospital) and when I asked if PET scans were more sensitive to picking up smaller evidence of disease, I was told not the case, no better.  Thanks  Rachael

[unmai]

I too believe in miracles.  I am so happy to know about the great news you posted. Thanks for sharing. Praise God for his love!
Congratulations - what are you doing to Celebrate :-)
Unmai

[baguba]

Rachel~
What wonderful news!  Just my input, but I would plug ahead for further confirmation/surgery and not wait.  When I had my recurrence, there were three small impants that showed up on CT scan; my CA 125 was 22 (it had remained in single digits until then).  They did a needle biopsy and all three were malignant.  Surgery was scheduled the very next week and I had all three removed.  It turned our that yes, it was cancer, but they were isolated implants (i.e. one on my spleen, so I had the spleen removed, and the other two were "just there" - no microscopic cells anywhere.  My case was presented, as was yours, before three tumor boards.  All three boards believed that once again it was caught early and that surgery, along with 6 rds. taxol/carbo beginning two weeks following surgery would put things into remission once again.  Two doctors even went as far as to say they were treating me as they would a first occurance, and went as far as to use the word "cureative".  I don't hang on to that much, but it sure sounds great!  So far, so good, as you know my story of the 6 rounds and now on yrs. maint.  I also asked for a PET scan, but my onc. said that sometimes we can drive ourselves crazy with PET scans and chase things that are not even cancer, but look "suspicious", only adding to our already heightened anxiety level.  I will ask for one again, though, when I finish my maint. program.  My tumor marker, again, as is yours, is a sure indicator of what's going on since my original dx.  Although I was a false negative when first daignosed 5 years ago, it has remained in the low single digits until my recurrence this past May.  So I say, go with your gut. If you are healthy, I would continue to ask if surgery could still be an option.  If this is one isolated spot, I would want to go in and get it out of there; and God forbid, if there are others that are there, then they can take a "second look" at the same time. God is good, and we are blessed; I pray each day that they find a cure for this dreadful disease, and that we are all healed. Enjoy the good news that you have received, and celebrate with  hope that you are going to be okay - you just have to get through these rough times.  God Bless!  Judie :)

[scoutshadow]

That is fantastic news.  You must be overjoyed.

[Conquerer]

Well  i am happy to find this site.  I am stage lll ovarian cancer.  Have had 4 rounds of chemo and doing well.  My doctor and I are now discussing Tamoxifen at the end of treatment for maintenace not want till it recurrs,  what have you heard of this.  It has finally hit how strong this disease is but I am a Conquerer and that is my goal

[milashka]

I would push and push for surgery...I don't understand why they want to mess with something like OvCa knowing how aggressive it can be. Always quick with the drugs but not so quick with the cutting. I would want it out, then do another chemo on top.

Re maintenance chemo, I opted against it. My onc said it does not prolong life, but it may prolong the cancer free interval. I'd rather be chemo free in between the chemos if you know what I mean. So far so good but I am not even 1 year out :(