Wait for symptoms to recur before chemo?

I am a stage 3b primary peritoneal cancer 2yr survivor. recently my ca 125 has quadrupled(although still in normal range) and he4 is rising. recent pet/ct normal but my tumors were very small and didnt really show up on my original scan my doc and a 2nd opinion said I need to wait to treat until symptoms show up. what is anyones experience with this, im convinced that something is there becaseu my ca-125 was the same for 2 years then 3 mo it spiked., my doc said remission would occur with same results if it was caught early or if I presented w ascites. I dont understand how this couldbe so, how can it not be better to find and treat early? he says it doesntn improve survival but what about time to end of survival?

Report post

20 replies. Join the discussion

Hi,

I had a stable CA125 while on Avastin as maintenance and then, my CA125 spiked. I did not feel quite right and my scans were clear. Scans do not show any microscopic cancer or anything smaller than 3mm. My team of doctors including my surgeon felt it was better to try another chemo of gemzar/carbo (based on molecular analysis) than wait for tumors to show up. I think no one has a magic answer. I have 3 primaries (ovarian, endometrial, and peritoneal) stage IV and I think you have to do what you feel is right and talk to as many doctors as you can. Sorry there is no clear answer, but I am all for being proactive instead of waiting for something major to happen.

Report post

Hi Coolccat
I also have PPC stage 3 diagnosed Oct 2008 and finished carbo/taxol in March 2009. Follow up scans showed a few nodules scattered here and there but it was not until I noticed a lymph node in my groin area had enlarged May 2010 that follow up scans showed several other lymph nodes had also enlarged - all this with a normal CA125. I think it was 22 at that time. Beginning of this year my CA125 had gone up to 42 and a growth was discovered in my pelvis area - I still decided to postpone treatment but in May a CT scan showed the growth had doubled and my CA125 had gone up to 76. All this with NO symptoms. So I have now gone back on chemo with Carbo/Gemzar and have had 2 treatments so far.
So if you have NO symptoms and CA125 is rising BUT there is a growth why not start treatment. I thought if I waited any longer until I do get symptoms then this growth COULD invade my colon.
Don't know if that helps

Report post

Coolccat

Your doctor may have read the Lancet, Gordon Rustin and colleagues' randomized trial reports on early versus delayed treatment of women with relapsed ovarian cancer. Patients were treated with either early chemotherapy, according to an increase in serum CA125 concentration, or with delayed chemotherapy based on clinical relapse. In the study, survival rates were not significantly different between those who started chemotherapy once a higher concentration of cancer-related proteins were detected and those whose treatment was delayed until they had clinical symptoms (Lancet 2010;376:1155-1163, 1120-1121).

Robert Morris from Wayne State University in Detroit and Bradley Monk from Creighton University School of Medicine in Arizona, said, "This clinical trial should be appreciated for its bold challenge to the assumption that early treatment of relapsed disease must be better than delayed treatment. Indeed, the article provides some evidence that early retreatment might be detrimental. Rustin and colleagues should be commended on this endeavor, which, like other provocative studies, begs more questions than it answers. From their study, principles that we have considered fundamental are deservedly brought into question."

Greg

Report post

Coolcat-
There were some snarky references to Rustin at our survivors' course by people I'd trust my life with. Maybe I'd trust Rustin if he were my onc, but he's an ocean and a continent away and working for one of the worst systems. Who sponsored his study, and was he looking at OS or PFS? Were the findings financially motivated?

What are you comfortable with? If you want to start treatment while it's in the biochemical stage, have a chat with your doctor.
You want every weapon possible at your disposal and beat the Beast. If you have a chance to smack it early, get out the bats and smack away.

Report post

Funding was provided by the UK Medical Research Council and the European Organisation for Research and Treatment of Cancer. No drug company involvement. For the first time women can be given evidence-based advice and can make informed choices about follow-up. What it shows is that treating patients 4·8 months earlier than is necessary, on the basis of a rise in CA125 concentration alone, does not improve overall survival nor quality of life.

Greg

Report post

Coolcat,

This has been an ongoing topic of concern for the ladies here. Here is the link to our most recent discussion regarding delaying treatment.


http://www.inspire.com/groups/ovarian-cancer-national-alliance/discussion/a nother-viewpoint-regarding-delaying-treatment-until-symptoms-present/

Report post

I still say that you should do what you are comfortable with...when I talked to the scientists at the Clearity Foundation and saw my molecular analysis, it showed even more that we are all individuals with cancer cells that respond to different therapies. I have had my own set of unique side effects plus the others listed by the drug manufacturers. I also say you listen to your body as we always know if there may be something not quite right. I am here if you want to chat...but know that you are not alone. There are many of us who have questions and concerns and unfortunately, there is no magic one size fits all approach.

Report post

I have PPC and initially at diagnosis five years ago the CA125 was 128. Three years later my CA125 began creeping up to 100 and I went on chemo again. Now it is two years later, the CA125 was 40 last September and in March it was 72. CT scan shows three small nodes in my left pelvis. I feel fine and have no symptoms. However, I do not want them to grow larger and the CA125 to go higher, so I am going back on chemo very soon, the next week or so.

Report post

This is all very interesting. I'm currently taking a 2 month break with no chemo. My CA125 is over 1000 but cancer showing on scan is 'small' about 1.5cm max. No symptoms other than some slight indigestion. I was in remission 12 months ago. then when I recurred, jumped straight back in with doxil, worked for 3 treatments then stopped, then the avastin, which seemed to hold it for a few m onths but then stopped. I want my body to get stronger, my immune system to build up again, and I'm going on holiday for a good break with my family!! When I return I'll be back in for more chemo!! It is scary..but if I'm anxious and want to go back sooner I can. Sometimes, the more drugs we put in our body we become immune to, so the longer we can defer 'safely' the need for further treatment, I personaly agree with.. However, fully understand anxieties in delaying, as I have these too!!!

Report post

what i am worried about is that nothing will show on scn unless I have ascites, my lesions were small flat granular lesions all less than 5mm so this time i could have a recurrence without ascites so I cant afford to wait on symptoms, I have alot of gi symptoms now from my previous surgeries, I think I will have to go to treatment on rise of ca 125 and he4 but my doc wont do it-i had 2 opinions and both said the same thing

Report post

As you can see, there is no clear cut answer to your question. I am working on recurrance #4 and in the beginning, I wanted to jump on it ASAP, now, I relish the time away from chemo and giving my body a chance to heal, get stronger and gain some 'normalacy' in my life. As everyone says, do what is comfortable for you- trust your instincts. Susan

Report post

I just want to reiterate what the results of the study are saying. What it shows is that treating patients 4·8 months earlier than is necessary, on the basis of a rise in "CA125 concentration alone," does not improve overall survival nor quality of life. For the first time women can be given evidence-based advice and can make informed choices about follow-up. Treat the tumor, not the marker.

Greg

Report post

i don't understand why timing and urgency is important in initial tratment for ovarian cancer but suddenly not so important for recurrence? why would the same imperative not apply?

Linda

Report post

I would think that relevant therapy and not timing is paramount in both.

Greg

Report post

Good question, Linda. I look forward to responses.

However, I think what Greg has written IS the response. It makes sense to me. For example, I was initially treated because I had tumors, not because my CA-125 was elevated (although it was). So, if tumors recur, according to the study, they should be treated; treatment shouldn't be re-initiated just because the CA-125 marker has increased if no tumor is detected.

Report post

but if you have primary peritoneal cancer these tumors are small and flat, below the resolution of the pet/ct mine werer only seen initially or actually what was seen was ascites. it is possible to have tumor recurrence too small to be seen on the pet and if no ascites what symptoms are my doc going on? it may be detected way too late in my case because the lesions are so small in this case I think a laporotomy is indicated by my onc says too risky-i disagree, willl have to get a third opinion

Report post

I would think both timing and the right therapy are important.
while it seems to make no sense to treat just based on a rising CA 125, there are cases for some women where the cancer is scattered or in thin sheaths not always visible on CT scans. Perhaps it would benefit that subset of women. Just because it is not on scans does not mean it is not there as a tumor.

I'd buy the argument that microscopic disease should not be treated if there is evidence that the treatment can't adequately reach the cancer until it becomes a tumor. Otherwise I think I would like to see some breakdowns by tumor, stage, treatment applied, etc. before I wholeheartedly concur with the results cited by Ruskin.

Linda

Report post

primary peritoneal cancer is treated with the same chemo as ovarian but its appearance is quite diifferent, mine were described as subtle white plaques and also granular-NO BIG tumors yet the entire abdomen was seeded with these small tumors-as I said only picked up when I developed severe ascites when i had surgery it had spread t0 other organs. so If Im having a recurrence without ascites-it may never be detected on a scan-only with rising he4 and ca 125 and laparoscopy

Report post

So, coolccat, that study doesn't really apply to you at all. I totally agree with your instinct to do something now. And, I'd be flummoxed by the doctors saying not to!

Report post

CC-- you and I were posting the exact same thing at the same time.. CT scans are fallible... for sure...

Linda

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support OCNA

Help the Ovarian Cancer National Alliance reach its goals and support people like yourself by making a donation today.

Donate to the Ovarian Cancer National Alliance

Discussion topics

Support OCNA

Donate to OCNA

Community leaders