Aa
In need of some hope after news of recurrence today
Hello, my cancer is back declaring war on my body. I have some in my lungs, liver and bowels. I was diagnosed in Feb 2007 with Ic clear cell carcinoma and went through 6 rounds carbo/taxol, ending in June. I just....I have never felt so hopeless. Even during my original diagnosis I felt like I could fight it, and when I finished chemo and got my port removed I felt like I had conquered. And now I can't keep it together and I feel like the 2 year sentence my doctor gave me is really my sentence. I'm only 25 and have just married and had so much on my life's to-do list. I feel so crushed. I think if I can get my sense of hope back I can go on and fight this. Please help
I am sorry for what you went through with your sister. I know it was an awful time for your family.
My mom died of this when I was 7, 4 of my 5 sisters have had it and I am on my first recurrence. I have been living with OVCA for a very long time. Most of the ladies on here are dealing with first hand experiences. We have been through so much and have shared so many stories that we are pretty well educated on this horrible monster. We know that if the chemo is going to work it will still work in two weeks. Sometimes we need a break mentally as well as physically to face the next set of challenges. Mostly I am sure that we were all just reassuring Libby that if her Dr said she should go than that is all the clearance she really needs. He certainly is not going to set himself up for a lawsuit by telling her she can delay treatment if it is not in her best interest to do so.
Those of us who have it constantly fight overwhelming fear and when you recur within 6 mths of ending your first treatment (which i did also) well, you can't even imagine the terror. Libby needs to feel like the normal, newly married, happily giddy 25 year old girl she is. Believe me, she will come back happier, well rested, well loved, and mentally prepared to face what will come next.
I do understand your concerns and you are right in that sometimes you shouldn't wait. My FIL was given 6 mths in Sept when dx with pancreatic cancer. He stopped treatments before Thanksgiving so he wouldn't feel bad for the holidays and will not start up again until next week. I was pulling my hair out mad. When given that little time you don't screw around and I am upset he didn't stay on chemo because it has spread pretty quickly.
I hope given your family situation you will make sure you are monitored closely as well as the other women in your family.
Kindest Regards,
Jan
My mom died of this when I was 7, 4 of my 5 sisters have had it and I am on my first recurrence. I have been living with OVCA for a very long time. Most of the ladies on here are dealing with first hand experiences. We have been through so much and have shared so many stories that we are pretty well educated on this horrible monster. We know that if the chemo is going to work it will still work in two weeks. Sometimes we need a break mentally as well as physically to face the next set of challenges. Mostly I am sure that we were all just reassuring Libby that if her Dr said she should go than that is all the clearance she really needs. He certainly is not going to set himself up for a lawsuit by telling her she can delay treatment if it is not in her best interest to do so.
Those of us who have it constantly fight overwhelming fear and when you recur within 6 mths of ending your first treatment (which i did also) well, you can't even imagine the terror. Libby needs to feel like the normal, newly married, happily giddy 25 year old girl she is. Believe me, she will come back happier, well rested, well loved, and mentally prepared to face what will come next.
I do understand your concerns and you are right in that sometimes you shouldn't wait. My FIL was given 6 mths in Sept when dx with pancreatic cancer. He stopped treatments before Thanksgiving so he wouldn't feel bad for the holidays and will not start up again until next week. I was pulling my hair out mad. When given that little time you don't screw around and I am upset he didn't stay on chemo because it has spread pretty quickly.
I hope given your family situation you will make sure you are monitored closely as well as the other women in your family.
Kindest Regards,
Jan
Waiting two weeks may be OK for some and not a good idea for others. How can people comment on this when they don't know anything about your cancer? Grade, aggressiveness, and most importantly how fast is it growing? Your Dr. must think it is slow growing, ask him, or he wouldn't wait. Some cancer's are more aggresive than others. Not to disagree with everyone here but everyone's cancer is different. My sister must have had a very rare cancer as her grade 3 cancer grew very very fast. Not to scare you but this is your life and you need to get the facts. Someone with a slow growing cancer can't comment on what I saw with my sister's ovarian cancer. You are young and strong and I pray that the chemotherapy puts you in a long remission.
I agree with all the other ladies, I am proof of it too. I was told I had less the a yr, when I did not get remission. I thought it was so unfair to go thru chemo? and not get Remission? Now after reading the stories of others here, I believe I was very lucky. I think it is much harder getting that remission, and then the cancer is always back there, and leaves ppl wondering ..when will it come bk? Not getting remission, that fear is gone for me. I concentrate on surviving instead, and make every moment special. my doc was wrong, I am still here, and still fighting. I was diagnosed stage 3c, just before xmas 3 yrs ago. and as for the doc? he is gone, I got one that believes in God, and never gives an expiration date. I chose to do charity work instead, I make jewelry for cancer patients in my local hospitals, and pass it out to chemo patients free for a smile. I am not going anywhere, I still have lots of work to do. So do you libby, u have a wonderful man in your life now, and u need to look at living the moments while you r on this earth. and not waiting for the end. Let yourself feel the pain, for without pain? we could not know Joy. I wish you that Joy libby
You go on your honeymoon and you have a great time. For those 2 weeks (even though it will be hard) you just forget all about cancer, chemo, recurrences, all of it. You can deal with all of that when you get back. Have a Merry Christmas and an even merrier honeymoon. See you when you get back! LOL Chris
I'm going to borrow Jan's "expiration date" term which I love. I flat out told my doctors this is something I'm not interested in at all, because I am not a statistic. I pointed out that people couldn't be more different in their health, habits, diets, attitudes, insurance policies, support networks, will to live, and so on, so don't pigeon hole me. I'm sorry about your recur but happy that it sounds like you have a good man to stand beside you.
Please go on your honeymoon. While cancer can spread quickly, if the chemo works and it will, it won't matter if you wait a few weeks. Your Dr would not have said you should go if you shouldn't. Please don't look at it like "but in the long run if it's not going to matter then we'll go." It is not a matter of whether it will work in the long run or not. Go, have fun. Build memories. Take pictures.
I know how bad the recurrence news can be. I fought like a tiger and was very upbeat during my first round, well, when my face wasn't in the toilet :), but when it came back in Sept I was all over the place emotionally just like you are. It sucks worse for you given your age, but you will make it through this one. My onc has never mentioned an expiration date for me and I agree with the ladies, you should find an onc who is more confident in his ability to keep you alive. There are so many treatments out there and we just have to keep trying to find the one that will do the job. If you look at this as something you will just have to deal with the rest of your LONG life than it is easier. I never gave any thought to recurrence so it hit me like a ton of bricks. I just got married in August although I am older than you. It still bites to have a new husband, a new life, new opportunities and than to have this hanging over you. You have to find a way to keep hope alive as we all do. There is just no other way to make it through this with your sanity intact. When I was told I was not in remission anymore i posted a question and got many responses. I was terrified. I am not now. It is just another round of chemo and I am still here!!! Please look at this link to that post as it had a lot of responses. You will be in my prayers. http://www.medhelp.org/posts/show/323915
Jan
I know how bad the recurrence news can be. I fought like a tiger and was very upbeat during my first round, well, when my face wasn't in the toilet :), but when it came back in Sept I was all over the place emotionally just like you are. It sucks worse for you given your age, but you will make it through this one. My onc has never mentioned an expiration date for me and I agree with the ladies, you should find an onc who is more confident in his ability to keep you alive. There are so many treatments out there and we just have to keep trying to find the one that will do the job. If you look at this as something you will just have to deal with the rest of your LONG life than it is easier. I never gave any thought to recurrence so it hit me like a ton of bricks. I just got married in August although I am older than you. It still bites to have a new husband, a new life, new opportunities and than to have this hanging over you. You have to find a way to keep hope alive as we all do. There is just no other way to make it through this with your sanity intact. When I was told I was not in remission anymore i posted a question and got many responses. I was terrified. I am not now. It is just another round of chemo and I am still here!!! Please look at this link to that post as it had a lot of responses. You will be in my prayers. http://www.medhelp.org/posts/show/323915
Jan
Please do not despair. I had 5 rounds of carboplatin/taxatere in 2005 and I had border line OVCA. My CA125 was always 4. This nuisance came back in early 07. Took six rounds of carboplatin. Did not do the job as CA125 went up. Consulted a very senior Gyne Oncologist at MD Anderson and he recommended weekly dose of Taxatere and the CA125 has come down to 29! My cancer is called "low malignancy potential" type. This is like diabetes (more complicated though with pain, anxiety and emotional drain) and there are lot of chemo agents to keep it under control. I get my encouragement from my friends who receive the chemo infusion at the same time. God luck.
Thank you all so much. Your words have really been uplifting and inspiring and it's making me teary reading it. I have some more questions about my treatment for you all, but we're moving out of our house today and my notes from my doc are buried somewhere in a box in the car. Oh, just one thing off the top of my head. We're slated to take our belated honeymooon leaving on Christmas day and coming back about 2 weeks afterwards. The doc said we should still go on the trip because starting chemo now or in 3 weeks wouldn't really matter, either the chemo is going to work or it's not. My concern is that if this is growing in my body, I want to take action asap getting the port back in and getting hooked up to chemo, but in the long run if it's not going to matter then we'll go. Any thoughts? Best, Libby
You can definitely take heart - if someone can survive for 17 years, you can be around for a whole lot longer! Don't let those DR's decide that for you. I agree with nolabean, a healthy diet and supplements will make a difference. Get educated on natural supplements and help that body heal! (It'll also give you something positive to focus on.) I haven't had cancer, so I don't personally know your pain, but I (and many others on this forum) will be praying for you. God bless! Teresa
Well, ****, words from a total stranger at this time probably are of no help at all. I understand your sense of fear and hopelessness. Do NOT give into to it, you fight this SOB cancer with all you've got! Scream, curse, break things, get all that fear and negativity out of your body. And do NOT listen to anyone to chides you for it, they are not in your shoes and cannot possibly understand. There are women here who DO understand and we are here to listen and help in any way we can. I beat this hideous disease when I was 42 and so can YOU! It's been more than 17 years now, I am cured once and for all. While reading other posts here I noticed some different treatments than was given to me. I had carboplatin and cytoxan, never had taxol. I also took supplements, shark cartilage, pau d' arco and drank gallons of all kinds of tea. I even grew my own kombucha mushroom for tea. I am a firm believer in using diet as a weapon in this war. I still eat tomatoes almost everyday, salmon, all kinds of berries, garlic, tumeric and yes, I still drink gallons of tea every day. It may not help, but it certainly can't hurt. I also tried to find ANYTHING that would make me laugh, which, I don't have to tell you, is not easy at a time like this. You keep fighting, there are a lot of us out here who care!
Hey there. You can beat this sweetie, I have no doubt in my mind! You and me are young and we have our age on our side. You keep fighting because I know you will still be here beyond that 2 year mark your doc gave you. I would also suggest finding a new onc, because if he/she is not on your side, then you need one who believes in you like you do yourself! I know you must feel overwhelmed and discouraged, but those feelings shall pass and you will back to your fighting self again very soon. Have a good cry, drink a glass of wine, eat some chocolate, curl up on the couch and watch a funny movie or a classic! I'll be praying for you hon, you can do this!! With love, DEandra
COMMUNITY LEADER
It can feel like such a slap in the face when you get the news of a recurrence. You have this agreement with your body, and when you are diagnosed the first time, as hard as it is, you learn to fight and get through treatment. But, when the news comes that the cancer is back, you question this agreement between you and your body, and wonder what the heck happened. At least that's the way I looked at it. I have been fighting my first recurrence since the end of April. I consider myself to be optimistic, but I admit, there are times I've wanted to tell myself I may not be around for long. But the reality is this: with all the different treatments out there, I can survive this for several years to come.
I am so sorry you are having to deal with this. It's hard any time of year, but to get the news at Christmas is particularly cruel. But my advice is this. You do need to give yourself time to mourn and cry. As much fighting spirit as you have, this still blows. But then, you get up, shake yourself off, and get ready to fight again. Let it make you mad if you must, but then use that energy to go back into battle. There are many of us here who are going through this for multiple rounds...and we're still here. There is always hope. Love and prayers are being sent your way. I'm with Chris....I know you can do this!
Gail
I am so sorry you are having to deal with this. It's hard any time of year, but to get the news at Christmas is particularly cruel. But my advice is this. You do need to give yourself time to mourn and cry. As much fighting spirit as you have, this still blows. But then, you get up, shake yourself off, and get ready to fight again. Let it make you mad if you must, but then use that energy to go back into battle. There are many of us here who are going through this for multiple rounds...and we're still here. There is always hope. Love and prayers are being sent your way. I'm with Chris....I know you can do this!
Gail
Hon don't ever give up hope. You were dx Ic which is great, as it was caught early. I know chemo is not the most pleasent thing in the world, but as my onc keeps telling me, there are hundreds of drugs out there. And as Jenny said there are different procedures for different areas that do work. She mentioned Radiofrequency Ablation for the liver, which I myself have had done twice now. I guess I forgot to mention, I was dx stage IV in Nov. 2005. If you were dx Ic and your Dr gave you a 2 year sentence then I think that I would find another Dr, one that had a little more confidence in what he was doing. I was in really bad shape when I was finally dx and was never given a "sentence". My onc told me "I am going to get you though this" Here I am 2 years later (much to the surprise of my Dr.s as I found out later) and going strong. I have been on chemo since I was dx but it really doesn't bother me, if that is what will keep me here, then bring it on! You had the fight in you at initial dx, so I am sure it is still there. You are young so you have a lot to fight for so come on Hon, shake it off and start fighting!! I know you can do it. LOL Chris
Please don't look at that 2 year **** that your doctor gave you as a sentence look at it as a challenge, a challenge to show that doctor you are not a statistic you are a individual that has youth on her side and as the girls above said there are so many more treatments out there and so many more being worked on.
You should also look at treatments such as radiofrequency ablation (for your liver) which I have read about on this forum look at some holistic treatments as well to work hand in hand with your treatment you will see Simplystar (Marty) is a wealth of knowledge in this area, meditation whatever it takes:)
It amazes me continually how hard life can be at time and especially getting news like this as you did just before the holidays, but please reach down deep for that strength to fight the beast again for your husband and most of all for youself, you can do it we are all behind you.
Positvie thoughts and hugs from downunder
Jenny
You should also look at treatments such as radiofrequency ablation (for your liver) which I have read about on this forum look at some holistic treatments as well to work hand in hand with your treatment you will see Simplystar (Marty) is a wealth of knowledge in this area, meditation whatever it takes:)
It amazes me continually how hard life can be at time and especially getting news like this as you did just before the holidays, but please reach down deep for that strength to fight the beast again for your husband and most of all for youself, you can do it we are all behind you.
Positvie thoughts and hugs from downunder
Jenny
I am reading more and more as well of people who continue to beat ov ca at Stage III and IV. Unfortunately it is considered chronic and we continue to have to adjust our lives to live in a way we had never imagined. The good news--as Rdg Teacher says, there are many types of treatment and I pray for you as well. I know you'll be up to the challenge. I've just finished 6 cycles of taxol/carbo (2nd time) in May and am "clean" again and well know the frustration of knowing that it's back.
My heart goes out to you! I'm 43 and was diagnosed in Jan. 07 with Stage IIIC and had seven carbo/taxol chemos and 2 IP Cisplatin chemos. I've been "clean" since October and my last two follow ups have been nerve racking waiting to hear whether it's back.
I have read soooo many reports of people who have beat 2, 3, and 4 recurrences. There are so many different treatments they can try and they're always working on more! You have youth on your side,too!
I don't know if you're religious or spiritual but prayer got me through (and I wasn't much of either before my diagnosis). I am stopping to say a prayer for you right now that God will give you courage and hope and peace in believing that everything will be okay. I will also pray that you will beat this disease again!
JoAnne
Texas
I have read soooo many reports of people who have beat 2, 3, and 4 recurrences. There are so many different treatments they can try and they're always working on more! You have youth on your side,too!
I don't know if you're religious or spiritual but prayer got me through (and I wasn't much of either before my diagnosis). I am stopping to say a prayer for you right now that God will give you courage and hope and peace in believing that everything will be okay. I will also pray that you will beat this disease again!
JoAnne
Texas
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