1st Recurrence. Drs want to wait ???

I was diagnosed Stage 3C OVCA in Oct. 2007.  Had debulking laparotomy Nov. 8th, and CA was 53. Finished 6 rounds carbo/taxotere on March 25th 2008.  My CA125 was at 36.  It stayed at 36 until a month ago when it raised to 53.  Had a CT and a PET but no evidence of disease.  Last week, CA went down to 42.  However, on July 23rd, I had emergency surgery to remove my gallbladder and several spots were found in my lower pelvis, upper abdominal wall, liver, and of course the gallbladder.  I spoke with my gyn/onc, and he stated that no additional surgery is warranted at this time...which is a good thing.  But then he stated that he and my oncologist don't want to start chemo...they want to wait and and let it grow so that it is detectable through a CT or PET.  That way, when they administer the chemo, they will be able to see whether or not the cancer is responding to the chemo they have chosen.    

I'm a little un-nerved by this.  Why would they want to wait?

Also, what would be the second "choice" for chemo treatment since the cancer sis not react to the carbo/taxotere?

Rhonda

[Lafnatitall]

Sorry!  I thought I was posting this on the medical community board...sigh...now I'm Forum Illiterate!

Rhonda

[Cindy809]

Rhonda ... I'm no expert but I would get a second opinion.  Chemo is necessary now to get the residual disease.  That is the whole point of chemotherapy.  It is to get all the cancer that can't been seen.  I don't understand why they would want to wait after surgery?  Isn't that standard of care for ovca?  That is crazy to me!  Chemo does a better job when things are microscopic. Just from reading about chemotherapy and the forums on the internet I've found that chemo does not work on tumors very well.  It may control them and maybe shrink them.  For some they disapear and you can have stable disease.  But that might be many chemos down the road.  The best chance for a remission is now for you!  I know from personal experience that waiting after surgery gave me no remisssion.  I had no choice.  I had many complications after surgery so it was 11 weeks before they could start chemo.  Finished with good numbers and bam it was back in three weeks.  Doctor told me that the reason was the delay with my chemotherapy.  Now I'm back on chemo because the cancer spread.  You have to be aggressive with this disease.  I know of some ladies that have grade 1 tumor and they wait between chemo because of such slow growth.  The residual disease left behind is the most aggressive.  Also I would question your CA125.  Ask if it is a good marker for you.  Hope this helps!  Please let us know how things go....Cindy

[Cindy809]

Rhonda ... I just read down the list and found your original post.  I haven't been posting lately and didn't bother to go down below yours until after I posted.  Hope the move goes well.  You sound like you have a wonderful family ... best wishes!!  Cindy

[JC145]

My CA was rising and it was thought that there were possible spots in my abdo that were too small to be detected by either CT or PET.  I just had a hernia repair and they looked around and didn't see any on the surface.  I do have a lymph node with FDG uptake from the PET/CT which we are watching.  My CA went from 8 in 11/06 after I finished tx .. by 7/07 it was 104 .. but no evidence of disease which is why the MD's thought it might be the "salt on a pretzel" type of thing ... too small to be seen.  I was put on tamoxifen and by the end of '07, my CA was back down to 20.  As of last month, it has risen to 60 .. so the tamoxifen is not quite as effective as it once was.   Having said that, we all have decided to do nothing right now ... just watch the lymph node .. just watch the CA-125.  I will most likely be back in tx @ some time, but I am not going to go thru a whole tx regimen for a lymph node that maybe ... just maybe ... showing up for a totally different reason.  I think there is a "rule of thumb" that if the CA hits 100, something must be done.  We may switch me to arimidex and see if that turns this around.  For the most part, the CA works for me .. not a good indicator of active disease for everyone.  Hope this make sense.  Judy

[Cindy809]

Judy ... it is so frustrating with the Ca125.  I haven't found any two people the same with this disease.  I guess when it starts to trend is a red flag.  In my case my CA125 is a good marker.  The insurance company won't cover chemo until it goes above the normal range.  Well, as soon as it did we started chemo and the cancer had spread to my liver (again!) and lung.  So waiting for me is not a choice.  My point to Rhonda is that after surgery chemo should be started as soon as possible to get to remission.  I am a true believer that surgery is the way to go with this disease!  Unfortunately I'm not a candidate for surgery anymore.  If I get the chance in the future I'd do it again.  As far as making sense....you do make sense.  The CA125 and scans are the only thing we have after recurrence.  My scans have been wrong at times too.  The only definate way to tell what is going on is by opening you up and when that is not possible some doctors don't have the answers and guess.  Chemotherapy to treat and wait for something to work for you.  Each of us are so different.  I hope your next treatment is the one that works for you!  (((HUGS)) Cindy

[momofsandj]

I had to wait after my first recurrence too -- they tried to keep me off chemo until my CA125 was truly rising in a regular pattern and when it hit 100, they put me on tamoxifen which gave me an extra 5 or six months -- then the count was over 250 and by this time there were three spots on the CT scan.  I had carbo/taxol again, but it was back five months later and I went straight to Doxil.  Done with Doxil, my counts are in the 200s but they put me on arimidex because the cancer on the CT scan was so small -- trying to see if the arimidex will keep it under control to give me some time to recover in between chemos I guess -- either way, while I'm not happy about walking around with cancer, I'm glad for the break from chemo and hope that the Arimidex will do something positive -- at this point all they are looking for is progression free survival (how sad is that, right?  the odds are no remission........) but who knows what will be down the road.....Good luck and don't panic -- just keep a close watch on everything and if it gets to be too much for you go for the antianxiety and antidepressant meds -- it helps keep YOU under control :-)
I'm with you
Jeanne