If Ovarian Cancer Returns

If Ovarian Cancer Returns

A recurrence is when cancer returns after a period of time during which the cancer could not be detected. The cancer may come back to the same place as the original tumor or to another place in the body. Between 70 percent and 90 percent of patients diagnosed with ovarian cancer will have a recurrence. The chances of remission decrease as drugs are changed. However, the side effects continue to increase with each new drug.

The effectiveness and type of available treatment for recurrent ovarian cancer depends on what kind of chemotherapy the patient received in the past, the side effects associated with previous treatments, the length of time since finishing the previous treatment and the extent of the recurrent cancer.

Many times chemotherapy is used to stop the progression of the cancer and prolong the patient’s survival. Surgery is sometimes used to relieve symptoms, such as a blocked bowel, caused by the recurrence.

A woman, in consultation with her doctor, should set realistic goals for what to expect from her treatment. Many times this means weighing the possible limited benefit of the new treatment against the possible down side of it.

At some point a woman may decide that continuing treatment is unlikely to improve her health or survival. A woman must be certain that no matter her decision, she is comfortable with it.

One of the factors in determining a patient’s risk of recurrence is the stage of the cancer at diagnosis.

 Patients diagnosed in stage I have a 10 percent chance of recurrence.
 Patients diagnosed in stage II have a 30 percent chance of recurrence.
 Patients diagnosed in stage III have a 70 percent to 90 percent chance of recurrence.
 Patients diagnosed in stage IV have a 90 percent to 95 percent chance of recurrence.

Report post

91 replies. Join the discussion

I just had my first CT since chemo ended. Luckily, it showed no signs of the cancer spreading. But is that common so soon after treatment? Does it take awhile to show the spread so that the odds go up with each CT scan?
How does everyone cope with the waiting for the results? I was a nervous wreck until I talked to my doctor's office. I'm dreading the next one - I guess being in remission means that emotions cycle from highs to lows between doctor's appointments and tests. I try to be optimistic, but every now and then it hits me that I could get a recurrence, which is so scary. I don't want more surgery and never want to go thru chemo again.

Report post

Wow! Fear is not the word. I have had various CT scans and CA-125's and I always dread the results. I dont think reality has really set in for me yet so I have not really learned how to cope with everything. I think once I am able to cope then I will not have that big of a fear because I will have a lot more faith.

Report post

I tried and failed to edit my subject line - I meant "fear of recurrence." I guess it gets easier over time, but I doubt it will ever go away, even after five years.

Report post

Lol oh okay. Well in that case...i guess my answer would still be the same. I'm just ssssscared. I am only 22 and this is really scary for me. I mean I can deal with the fact that I cannot physically have children, but I dont know how I would react if they told me the cancer was back.

Report post

Knowing that statistically I can expect a recurrence at some point, I want to know what to expect. Msmith, in her August 1 post, mentions a bowel blockage as a symptom of a recurrence. How common is that? What are typical symptoms of recurrence? The same as the ones recently publicized, such as increased waist size, bloating, change in bowel habits, etc.? My concern is that because my oncologist cannot find any clinical evidence of cancer (therefore I'm in remission), there could be cancer cells multiplying without detection. I would like them to be discovered sooner rather than later so that I can be proactive in developing a recurrence treatment plan with my health care team.

Report post

It's so sad - you are too young. Best of luck & I hope you keep having negative tests.

Report post

Hi! I'm three years from treatment, but the fear just doesn't go away. Yes it does, for about 2 1/2 months, really! Because you just think about other things -- you have to. But as I get closer to my 3-month check-up, I get nervous. I KNOW we all do. I've talked to women 10 years out, and they still get nervous. I get really nutso if the ca-125 spikes. It did last time, but then they told me all sorts of things can affect it -- like inflammation. If you have a cold, or a bronchial infection or something. We'll see what the numbers do this time, but I'm a little more nervous than usual. It's like waiting for the other shoe to drop -- that's how I think I'll feel for a long, long time. I don't know how you get over that. I think the best advice is just to NOT think about it between visits, for as long as you can. And you CAN!!!

Report post

Hi all,

I am coming up on my 3 tr since dx. I've had two recurrences since I ended the first round after surgery. It is scary to live with this disease. Going to the Onc always makes me a little scared but I also have to talk to myself. I tell myself I'm feeling fine...which is a huge reminder. My Onc does not just treat on the numbers alone, he waits for two other very important issues....one is how I feel and has it shown up on the CT scan yet! I asked him why not tx as soon as my numbers start to rise over 35. his statement to me was the longer your off chemo, the stronger your body will be. So when my ca-125 started to double and triple in some cases he waited He did begin to have monthly ca-125 on me..finally after 6 months of watching the number go up it reared it's ugly head on the CT scan.. I think I took the news harder this time then ever, even though I had 6 months knowing something was brewin in me...very hard to try not to live in fear. I found it hard especially to plan for any future events, like traveling to see family or friends. So I don't think it ever gets easier as you go down the road with living with this disease..you will always get alittle weird around the visit time,and waiting for the results......It also weights on my mind that life will never be the same for me..and I try not to go there too often, or I'd turn into a sobbing mental case......Stay strong..and (((hugz))) to all...Joanne

Report post

I'm concerned about recurrence, also. Even if my doctor tells me that my chances of recurrence are slim, how can I believe him when I start experiencing symptoms of recurrence, but the CA125 remains low? If I'm taking Metamucil every day to have bowel movements, having increased waist size even though I'm exercising and watching my diet, having pain that comes and goes, and then I get a low reading on my CA125, should I assume all is well inside my body? I want to believe that everything is fine, I even feel my stomach at night when I'm laying down just to make sure I don't feel any hard lumps. I wonder if it gets better as time goes on?

Report post

You're definitely not a sobbing mental case -- you're strong -- because you've faced this three times! Some of us dread just hearing the bad news the first time. But, look, you're staring this thing down! Been there, done that, doing it again. Interesting tips about waiting. I guess they can't do more until it shows up. But I understand how nerve-wracking the wait must have been. And how disappointing the results. Well, you know what they say -- treat it like a chronic disease. When it comes back, wallop it! So go have a good chemo! (good? did I really say that?)

Report post

Barb -- we're in the same boat. I've been given those assurances, too. But I think we tend not to believe our docs because we know how sneaky this disease is. Had one thought concerning your symptoms -- how far are you from your initial surgery? Even 7 or 8 months after my surgery, I was having pains and some of the same problems. One day a resident came in and said -- "That's all from the surgery. They won't tell you that, but it is." Surgery takes a long time to heal, and even then you can have scar tissue, etc. that affects your bowels. Don't know if this has anything to do with your case or not, but just thought I'd throw it out there. It would be nice to just relax and believe our docs, wouldn't it? Easier said than done.

Report post

Diana (and Barb)--My surgery (staged at IIIc, suboptimal) took a long time to recover from, as well. I had various bumps and twinges, especially around my navel. My post-chemo CT scan showed some streaks, which may have been scarring from the surgery or may have been cancer, so I'm on "taxol maintenance" for a year. It's been 11 months since my surgery and I still palpate my abdomen when I lie down in bed. I've requested and have been scheduled for another CT scan (my last one was in February) next month. I totally agree with the comments that it is scary not knowing and suspecting something may be wrong. If the cancer cells are back and multiplying, I wouldn't want to wait to have more treatment. My gyn-onc has never mentioned that staying off chemo strengthens my body to fight any recurrence. If he had, I might not have agreed to continue the taxol for a year. Has anyone else seen any research that has substantiates that concept?

Report post

Hi Carmeta --
Taxol maintenance for a year! I can't even imagine that because I couldn't take the Taxol at all, or the Taxoterre. They tried twice -- two very bad reactions. So I could just do the carbo -- which may or may not be a good thing. So, no, I don't have a clue about how taxol may or may not weaken the body. I think being very aggressive is not such a bad thing, though. Interested to hear what others have to say.

Report post

Diana-I'm 2 yrs. 8 months since my surgery and 2 yrs. 2 months since my last chemo treatment. I agree that my bowel problems and pains could be scar tissue. One thing that has always bothered me is that my tumor ruptured during dissection. I know they always do a saline irrigation before completing the surgery, and my doctor recommended the chemotherapy "for extra assurrance" in case they missed any cancer cells hiding out in there. I suppose it will get easier to believe all the cancer is gone as time goes by. I just want to be sure that I'm on top of things in the event of a recurrence.

I just heard of a lady diagnosed a stage 1a 10 years ago, who is experiencing a recurrence. She's having a rough time and was just in the hospital with three new tumors. But, I understand that she never had chemo with her initial diagnosis. I guess every case is different and there are no guarantees that come with this disease.

Report post

I have just read a lot of comments. As I have already stated. I am 22 years old and my last surgery ( i have had ) was Oct of last year so I am coming up on my 1 year anniversary of being "free". I have had a few episodes lately where i have been struggling to have a bowel movement. Of course I automatically assume that something has snuck back into my life. I have been to the ER 3 times in the last month because i go days at a time with bad stomach pains b/c of gas and bloating and constipation. They completed a CT scan and it came back good. Well actually the last ER i went to they didnt even give me a picture said it wouldnt be ready til the morning. I am scared to visit my doctor because i dont want her to order me to get a CA-125 done or other tests. I have a fear of what the results will be. does anyone have any advice for me. Have you experienced these things before and still had negative results?

Report post

Dear bird042304,
First of all, I'm sorry that you have to go through this at your age. Do you visit your oncologist every three months? Have your CA125 numbers been in the normal range? If the CT scans were clear and your CA125 numbers are low, then you are probably okay. The constipation could be from scar tissue from your surgery. I've heard that a Pet/CT scan has a better picture, but some insurance companies will not cover the cost of this test. You might want to investigate that option.

As I said in one of my earlier posts, I've experienced the same symptoms as you, and when I go for my 3-month checkup, it is always good. My CA125 fluctuates between 7 and 8 and it's been that low since my chemo ended. My oncologist always does a bimanual pelvic exam and that always checks out okay too. I haven't had a CT scan since last fall and don't know when I will have another one. But, having too many CT scans is not good either.


I guess we have to go with our gut feeling. If you think something is wrong, then be aggressive and tell your oncologist. If he/she won't take you seriously, then maybe a second opinion is in order. After all, you are only 22 and have a full life ahead of you!

Report post

I too have this disease and never realized how many of us there are and reading all the comments from all of you makes me feel not so all alone,

I know how you feel about going for tests, I am so scared when the time comes, I get cranky and can't sleep., Thankfully the tests have been coming back low the last one was 7, and I hope they stay that way, I still have the tumor in me as they could not remove the one that is wrapped around the bowel, they removed part of the intestine and the omentem, I feel wonderful, asside from the problems with the bowels, but as you all stated, whenever we have aches or pains we think the worse that it has returned. It is hard not to think that in our position.. I take one day at a time and one thing I have learned from all this is to not stress out, it only makes you feel worse and you start thinking awful thoughts.

I was treated with carbo/taxol, and did great on it, had minimal problems( hair loss ) was the one thing I had that bothered me, I never got sick, minimal aches and pains.. I have never heard of the year long taxol treatment, but if it works, great.,

I wish Barb all the luck fighting this disease, you are too young to be dealing with this, keep your chin up and just keep on fighting. To the rest of you, just keep on fighting , I intend to keep on going for a long time and attitude make a diffference. We all need to hang in there and support eachother..

Report post

Hi Barb --
That's what I mean by sneaky. The story about the 1a woman was too scary for words. Guess we can be glad we had treatment. I didn't have any ruptures, but was told I had cells in my washings. Which travel all around -- so it's kinda like the same thing. You always wonder how they can catch every single little cell. That's why I guess all you can do is just blast it. And have a lot of faith. I met a woman having chemo once, before I started treatment, and she said "Looks like you've been invited to a party you never wanted to attend." You can say that again! If you get any tips on how to stay on top of things -- please keep posting!

Report post

Hi Carmeta,

I have heard of a few other gals that have done the monthly taxol for maintence, and have acheived very long remissions...so I think it's a good thing, and will ask my Onc next time I see him. Chemo is very hard on the body, I started Gemzar in Feb. for my second recurrence,,I did very well and my ca-125 started to come down. The only thing I noticed was edema to my ankles. My Onc checked that out and stated I had lymphadema, caused by too many lymph nodes being removed during my surgeries. I zipped along on Gemzar...my Onc was very excited that I was doing so well, by the beginning of my 5th round (a round for me was 3 weeks of tx, and then 1 week off) my ca-125 was 14. During my 5th cycle I started to notice increasing edema in my feet, ankles and calves.....I remarked to the chemo nurse...I'm gaining 2 lbs a week...no one looked into it. The last round of the 5th cycle did me in...I began to have a difficult time breathing, uncontrolable heartburn, and increasing BP. SO my Onc referred me a Internist, I went to see him, my BP was now 206/104 and I had gained more weight. He gave my BP meds right there in his office, and stat bloodwork was done. he also gave my RX for fluid. The stat blood work showed I was going into Congestive Heart Failure. Thank God he caught it!!!!Needless to say I was given the proper meds, and slowly got better..I lost 10 lbs in 4 days!!! I'm still losing weight. During all of this they have now found nodules on my left lung and enlarged lymph nodes.....however I'm on a chemo vacation till the end of Sept, my ca-125 has gone from 14 to 38.8....but I can't have chemo right now, as I'm way to weak. I feel good, and am not exp any new pain..so I'll take the vacation....I will ask my Onc about the monthly taxol..maybe that's the way I should go......((((hugz))) to all of you...Joanne

Report post

Judy-I'm surprised your number was so low with a tumor still there. Is the CA125 a good marker for you? My CA125 was only as high as 98 when I was first diagnosed. I've heard of women having numbers in the thousands. A woman who sat next to me in the chemo room was diagnosed a Stage 1A and her CA125 was 3,000. I wondered why her number was so much higher than mine, since I was a 1C.

Hang in there, Judy. I admire all you ladies who are fighting recurrences so courageously!

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