Does it always come back????

• By youngmom
• Reply 295968
• February 21, 2009 at 8:03 pm
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Sandy,

There is no question that the statistics for advanced ovarian cancer are downright dismal. However, when I was first diagnosed ( IIIC ) my doctor told me that there are in fact some women who are cured. The majority ( 75 to 80 %) do have recurrences and eventually ( whether it be years or decades later ) die from the disease, but everyone is an individual and we do not know if we will be one of the very lucky ones who is cured or not. I try to think of myself as cured, while being very cautious about my body and following up with every appointment and test. I also try to control what I can control ( following an anti-cancer diet, taking supplements, getting exercise, stress-reduction, etc ) and the rest is in God's hands. Although we need to be aware of the statistics, we shouild focus on living and assume we can beat this dreadful disease. And even if we end up not being cured, we can hope that it is a chronic disease with long remissions.

• By plk
• Reply 296007
• February 21, 2009 at 9:15 pm
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Sandy,
I'm new to this, but I've talked to several other patients at the Oncology center and also at the infusion center. One woman has been cancer free for 14 years now, she had stage four. She had to fight it for three years, then it went away. She was at the infusion center for antibiotics for fluid on her lung. Another woman had six rounds of chemo and has been cancer free for six years, she had stage three. I think that as many billions of cells as there are in the human body, it's remarkable that more things don't go wrong. I hope you will be in that percentage where it doesn't come back. This is a very scary process. Good luck and God bless.

• By viki
• Reply 296132
• February 22, 2009 at 2:12 am
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It is a statistics game, I wish you very much winning in this lottery. You are just one person, anything can happen, but statistically speaking much depends on your starting point - the "statistical" prognosis of Stage IV is different from that of Stage I. But Disraeli once said - "there are two kinds of lies - ordinary ones and statistics". If you REALLY want to know better you might ask your oncologist bluntly - "I am not looking for consolation, just for statistics for people in my physical shape" and if he or she sees that you mean it, you might get more info. But really, what for? Perhaps better enjoy life and hope for the best?

• By Manuelaingermany
• Reply 296217
• February 22, 2009 at 8:20 am
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Hi Sandy,
I asked myself the same thing. My husband got worried when I would read and read all the storys on this page, and I would start crying lots of times, because the storys are so sad, seems like everyone has a recurrence. But then I thought about it. Where are all the longtime survivors? Not on this page. If you are a longtime survivor you probably want to put it behind you, and not write on this page anymore. Until you have a recurrance, then you are back and everyone thinks, that everyone has recurrances.
So I am sure, there are lots of longtime survivors out there and I hope you will be one of them.
Manuela

• By katelynsmamaw
• Reply 296281 · In reply to 296217 by Manuelaingermany
• February 22, 2009 at 9:34 am
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Manuela- I'm so glad I read your post. You make a real good point. If I was a long time survivor I probably wouldn't be on here. Was getting a little discouraged too that most did have recurrence. Thanks again. You just made me feel better! ;)

• By FavoriteAunt (Inactive)
• Reply 296337
• February 22, 2009 at 10:31 am
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I don't know what stage you are and that could make a difference. I think youngmom said it all very well. We do not know - each case is individual - but statistics show most with advanced stage will have a recurrence - it's just that kind of disease.

I don't use the words "cancer free" and neither has any of my doctors ever used them. I have been in remission but never told I was cancer free and my onc. only used the word "remission" when I reached the 5 year mark and I actually asked him. I am IIIC and was in remission for 6 years, much to the surprise of my surgeon and oncologist. I was told given what I came to them with, most people would have relapsed after a year or a year and a half. I was blessed. I had first recurrence with absolutely no symptoms other than an elevated CA-125 at my routine checkup. Back for more chemo but this time I only got a 10-month remission. This recurrence came with discomfort and some pain, confirmed by tests, and I'm back in chemo now. I pray for a good remission, but only God knows. My onc. said unfortunately it will probably be back again. So, I take it one episode at a time.

Statistics are important, but you cannot live by them because there are always exceptions. I think with ovca about 75% of late-stage patients will have a recurrence. Maybe you are in the 25% group and I certainly hope so. My onc. once told me not to live by statistics but to live my life. He is right and I try to do that. My only advice is to be very vigilant in keeping your regular appointments and see the doctor is if you feel that something isn't right. No one knows your boby better than you. I have always been healthy and took good care of myself, but it has nothing to do with ovca. That seems to have a life of its own. I really wish you are one of the lucky ones and have a really long, permanent remission!

• By kla
• Reply 296450
• February 22, 2009 at 12:00 pm
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I am 3 years out ,I have a friend 8 years out another 10 years out.Oddly we all have the same Dr. and didn't know it.He was very blunt with the statistics of 3c . He also said to each of us that there are long time survivors and he doesn't know who will be and who won't but it was better for us to focus on the 20% than the 80 %.
I personally would like to see some research on the 20% ,what did they do how can what they did increase the probability of survival is there away to see how lifestyle changes can change outcome.
Quiet honestly if I do every thing that some say or chase every possibility I exhaust myself financially and physically and emotionally.So I come here look at the things which make sense and do what little changes I can.
I dedecided a long time ago that I was a maverick and would go my own way . So here I am doing the best I can to go the other way .Are there things I could and should to change things yes but I am taking one step at a time . Which is what I suggest to each and every one of you . Pick your way and do what is best for you.God Bless kate

• By Gabriele
• Reply 296452
• February 22, 2009 at 12:01 pm
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Manuela,
(Wo lebst du denn? Ich bin ursprgl. aus Rothenburg.)
You are so right in assuming that most survivors quit contributing to this site because they want to put it behind themselves. I am one of them. I derived much comfort from this site when I underwent chemo treatments from the many kind and knowledgeable women. I was diagnosed stage Ic last February 26th (This coming Thursday will be my first cancer-versary!!!) and have really good numbers now. I consider myself in remission and become so sad when I read about the frequent recurrences. My early detection put me in a very low recurrence rate category.
Now I focus all my energy on awareness raising for OvCa: fundraising, Relay For Life, TEAL TUESDAY etc.
I still take a peek at this site a few times a week to see how my fellow OvCa women (momanderson etc.) are doing. I admire them greatly!

Remember: Wear TEAL on TUESDAY, 'TEAL' we find a cure!

All the best,
Gabriele

• By TvlBeach
• Reply 296594
• February 22, 2009 at 2:03 pm
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As you see my history below, it did come back. But I do what I need to do, enjoy life and try not to dwell on my road of life. My 5 year Cancerversery will be in September. I'm an advocate to Ovarian Research $$'s and I always make sure they I tell other the women symtoms to look for. It's not always a death sentance, but it is a Chronic Disease.
-Pam - Jersey Shore, NJ DX @ 47
-Diagnosed Sept. 2004 -Stage IIIC
-6 rounds of Taxol and Carbo
-There is Hope! Keep Fighting!
-Ovarian Reoccur - 06/07 - Last Chemo 12/4/07
-2nd Reoccur 3/08 - Doxil Only -
Clinical Trial, Last Chemo 8/12/08
I am in remission now, but
"Remission - Is Not a Cure"
Wednesday I am giving a talk to Medical students on how to have a good Dr./Patient relationship and how to listen to their patients.
Good Luck everyone and enjoy everyday!

• By MaryW
• Reply 296634
• February 22, 2009 at 2:44 pm
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Dear Sandy,
Others have said this well, there are always those who do not have a recurrence even after 5, 10, 20 years. I am not one of them, but I personally know 2 women who are past 10 years and never had a recurrence! And one was stage 4C. There is another thread someplace on this site where many women posted about many years with no recurrance. So, live each day to the best and know that you could be one of these women! Time will tell. I wish you well.

As others have said, OVCA is becoming more of a chronic disease. When I was diagnosed in 4/04 with IIIC, I asked for a general prognosis and the gyc/onc told me about 30% make it beyond 39 months. I am now 58 months out, have never been in remission, had almost continuous chemo, and have had fairly good quality of life. So I consider myself very fortunate!
Blessings. Mary

• By Carol915
• Reply 296901 · In reply to 296594 by TvlBeach
• February 22, 2009 at 7:17 pm
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TvlBeach,
Do you know what they gave you for your clinical trial that put you in remission???? Carol

• By TvlBeach
• Reply 296943
• February 22, 2009 at 7:52 pm
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http://clinicaltrials.gov/ct2/show/NCT00262990?term=ovarian+cancer&recr=Ope n&rank=131

This was the trial I was on. When my information went in, they gave me Doxil.
No loss of hair, but did have an allergic reaction. With the allergic reaction, they lowered the dose 25% the next time and everything went well.

• By 3h
• Reply 297115
• February 22, 2009 at 10:40 pm
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My doctor is a gyn/onc who worked at both Stanford and the Mayo Clinic, and he told me (I was IIIc) that my chances of recurrence was 50/50. Being a glass half-full type, I didn't see that as bad at all. I had optimal debulking, and he got everything, and to be honest with you, I never even considered the possibility of a recurrence until finding this website
As others have mentioned, people who are fine and have moved on are not likely to be on a website like this, making this site heavily skewed towards those with recurrences.

• By NotDyingToday
• Reply 297324 · In reply to 296450 by kla
• February 23, 2009 at 7:57 am
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Hi,

KLA wrote: " personally would like to see some research on the 20% ,what did they do how can what they did increase the probability of survival is there away to see how lifestyle changes can change outcome."

Excellent thought and I too would like to know more about the 20%. One bit of information I found related to women with better (longer) survivability came from research done at the University of Pennsylvania (and other institutions) which strongly suggests that women who have higher levels of T-cells in their tumors seem to live longer. This research is one of the reasons there's growing interest in immunotherapy as a treatment for ovarian cancer. The thinking is that you can ramp up one's immune system so it more aggressively and accurately identifies one's specific cancer cells and then kills them (T-cell or killer cell response). There are several clinical trials--very early stage--around the country right now that are testing this hypothesis.

• By JanJ
• Reply 297422
• February 23, 2009 at 9:22 am
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Kate,

I go with maverick. We absolutely have to do what we most feel comfortable with, and pretty much ignore the rest. Since we really don't know what supplements to take, or not.
The only thing that frustrates me is that -- now knowing that I'm positive for the BRCA 2 gene defect -- my sisters refuse to get tested. They think eating the "right food" and exercising will keep them from getting cancer. And I interpret that as it's my fault that I got my cancer; they must think I didn't take as good care of myself as I should have. Jan

• By youngmom
• Reply 298066
• February 23, 2009 at 5:51 pm
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3H,

My doctor told me the same thing about recurrence - he told me in my situation I would have about a 50/50 chance of recurrence, and I took him at face value. However, other women who go to this same doctor have been told a more grim prognosis. I was stage IIIC with node involvement, but I had small volume cancer which was completely removed. So, I guess doctors use their experience to make their best prognosis based on the individual - but as someone once said on here, no matter what the doctors say and no matter what we do, our future still is somewhat of a crapshoot.

• By SarahSagehen
• Reply 301121 · In reply to 297422 by JanJ
• February 26, 2009 at 4:03 am
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It is NOT your fault. A nurse friend of mine pointed out that a lot of people who get cancer are fit, eat their vegetables, and have healthy lifestyles. Sometimes, a person's body is just too good at growing, and some cells grow too quickly, without normal rates of die-off. Cancer.

Certain circumstances can raise or lower the likelihood of getting cancer, but, in the end, no "good behavior" can protect a person from getting cancer--especially if they have a BRCA gene mutation.

• By Patricia123
• Reply 301316 · In reply to 298066 by youngmom
• February 26, 2009 at 9:22 am
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I think you are right. I had read the grim stats,,I am 3c with figos of 2/3 and had bulky diease but had an optimal debulking with no residual disease seen. And am having iv/ip carbo/taxol.

He said I had a good 50 to 60 percent chance of making it over five years.

I think the debulking and iP treatment improves things substantially and that is not accounted for in the stats.

Plus most women do not see an oncology surgeon and do not get the optimal debulking and some places still don't like or don't do IP treatment.

I think the stats need to be refined for those who want a good assessment of their chances. As it is, the docs know thus your doc told you the good news. It would be great to see the stats updated from recent data rather than old data. The treatment has gotton so much better from what I read.

• By Patricia123
• Reply 301317 · In reply to 298066 by youngmom
• February 26, 2009 at 9:22 am
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I think you are right. I had read the grim stats,,I am 3c with figos of 2/3 and had bulky diease but had an optimal debulking with no residual disease seen. And am having iv/ip carbo/taxol.

He said I had a good 50 to 60 percent chance of making it over five years.

I think the debulking and iP treatment improves things substantially and that is not accounted for in the stats.

Plus most women do not see an oncology surgeon and do not get the optimal debulking and some places still don't like or don't do IP treatment.

I think the stats need to be refined for those who want a good assessment of their chances. As it is, the docs know thus your doc told you the good news. It would be great to see the stats updated from recent data rather than old data. The treatment has gotton so much better from what I read.

• By Carmeta
• Reply 309150
• March 5, 2009 at 8:49 am
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It's my understanding that there are indeed statistics showing the difference in disease progression and survival rates for women whose debulking has been optimal as distinguished from those with suboptimal debulking. Suboptimal means the surgeon leaves some tumor greater than 1 cm.
If the surgeon "gets it all out" it is even more likely you will be in the 20% with the longer survival. Even in this thread, there is anecdotal evidence that when the cancer is "completely removed" you have a much better chance of a long, long remission or even a "cure."