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wonderingalice
Posts: 49
Joined: Feb 2010

My mom has a rare form of uterine cancer (UPSC) that has relapsed quickly and aggressively. The oncologists did not beat around the bush in that the prognosis with recurrence is poor. Everything I have read online is grim. I am struggling to maintain a positive attitude.

People keep saying that if we just "think positive" she will beat this, when surgery, chemo and radiation have barely slowed the beast down. I am getting bombarded with research and "miracle cures" that leave me feeling like I am not doing enough.

I feel like I am just trying to face reality...but am I really just being a pessimist?

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

((((Alice)))). I had my initial surgery for UPSC Stage 3-c in October 2008, and did the aggressive chemo and radiation almost all the UPSC sisters have to endure, ragardless of the stage of their cancer. I'm currently in a tenuous remission after 1 recurrance.

The truth is that many women who 'think positively' don't survive. And many women who wait in dispair for the 'other shoe to drop' live on and on in their depressed state, cheating themselves of the joy they should feel. So it is naive to think a positive attitude guarantees a cure and that somehow it is your FAULT that you could not rise to the occasion. But, sweetheart, to not allow yourself to hope is to deny yourself the small joys of each day. You see your mother's pain and discomfort. But can you see the moments of light in each of her days? I may have UPSC and a poor prognosis, but every day I feel the small joys around me: crocus in bloom in the snow; my grandson absent-mindedly running his hand over my bald head as he tells me a secret; bright sun streaming in my window; a good cup of coffee;...simple joys. Please believe that your mother also feels these small joys in the midst of her hardships. Amd that you must both focus on these joys or cheat yourselves of the time you have left together. LOOK for the beauty and open your heart to it.

And there are surprises in treatment, too! When I had my recurrance after a 5-month renmission, I was put on a weak dose of taxol, given weekly, to 'hold me' until after the holidays before we stepped up to a stronger chemo. (Doxil was discused). But, surprise surprise, the weak dose of taxol started lowering my CA-125. After 10 rounds it looked as though the taxol was no longer doing the job so they scheduled a CT/PET to see what was going on before switching chemo. SURPRISE AGAIN! I had a clear CT/PET! And I was back in remission after 10 weeks of chemo, when initially I was warned that I should plan on a minimum of 4 months of chemo. So, even though there are many BAD surprises, there may well be a couple of GOOD surprises. And even if there is not, in each day, there are small moments of goodness if you diligently look for them and hang onto them.

My oncologist always said that we were going for a CURE for me during my initial treatment protocol, and I let myself believe I was cured during my initial 5 month remission. I lived each day of those 5 months in that blissful joy. Yes; my recurrance was heart-breaking (understatement!). But I tell you from experience, it is better to have your heart broken over and over in disappointment than to live 'prepared' for more bad news. With my recent clear CT/PET scan, my oncologist said "This may be the start of a prolonged multi-year remission; how can we know?" And I let myself believe in that now, knowing how heart-broken I will be if it turns out to not be true. I'm not an idiot; I know what UPSC is. But I am willingly trading any 'preparedness' for the joy I can feel each day wrapped in my hope and optimism. You've faced and survived horrible news before. You will be able to face it again. In the meantime, live in the moment (when the moment is good) and allow yourself the joy of hope.

Cindy Bear
Posts: 560
Joined: Jul 2009

Hi Alice. I know how you feel. Incidentally, from what I read UPSC is not really that rare. The latest figure I saw was 20% of all uterine cancers are UPSC. My mother was Diagnosed last year Stage IV endometrial adenocarcinoma.. (at least that's what they told us, I wonder if they really knew) Long story, we received her diag. in Feb. of 09, hit like a ton of bricks and in June 09 , 4 months into "treatment" she was gone. We are still shocked and devasted. I don't know what stage your mother is but you are right, prognosis is grim. Still no one knows what will happen. MY mother's gyn/onc. told us that even in Stage IV, 10% of these cancers wil be cured. Yes he used the word cured. I know people mean well but like you I didn't want to hear about miracle cures, didn't want to hear any platitudes about God not giving people more than they can handle or closing a door and opening a window.. I bit my tongue alot. My supervisor's mother recently had a clean Pet scan after going thru aggressive chemo for 6 mos for Lymphoma. She came dancing out of her office one day to tell us the news. She said, "see prayers and well wishes do work. I walked away. I am sorry but it's the luck of the draw. Her mother rolled double sixes, my mother rolled snake eyes. I also spent many sleepless hours on the web, researching for hours.. but my mom wasn't open to second opinions or alternative meds or even doing nothing . I know how helpless and scared you must feel right now. Just be there for her .. that's all you can do. Be there for her wherever this rough ride takes you and it's a rough ride all right.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

The sad truth is that every person's cancer is as individual as a snowflake, unique to that person alone in genetic mutation and the whimsy of how it might microscopically spread. Like being struck by lightning or being run over by a tornado, it's the luck of the draw. Some lucky individuals fall in that blessed "10% cured", and the other 90% do what they can to see another day.

People say stupid things because they can't possibly know what cancer is like until they have lived with it personally or witnessed it in someone they love. They mean well. I imagine when you are cured of cancer that you do feel that God singled you out for a miracle, and you want to shout that to the rooftops. They never think how that makes those feel who have prayed for God's intervention and it seems that God has answered with "sorry, but no, no miracle for you." (For that reason I never pray to be cured. I don't want to go to my Maker angry and bitter. And it simply seems wrong to not be praying, instead, for a cure for some young mother I met at chemo or the teenage boy with his whole life ahead of him; how can I ask God to choose me and not one of them?)

You simply can't hold onto that anger. Please try and let it go. Life isn't fair. Fact. But life is beautiful and I am grateful for each extra day I get to live it.

grandmafay's picture
grandmafay
Posts: 1610
Joined: Aug 2009

I can't tell you how tired we got with people telling us about having a positive attitude. We had one. It just wasn't the type of positive attitude they thought we should have. My husband had stage 4 colon cancer. After it reoccurred we knew that we were probably just buying time. We actually knew that from the beginning, but we didn't really accept it. My husband's goal was to buy as much time as possible and to live as well as possible. He tried every recommended treatment. When he felt up to it, we made memories and spent time with friends and loved ones. My husband never gave up, and he kept a positive attitude to the end.

We also had people tell us about all kinds of cures and treatment. It seems like there are many out there. We would thank them for their concern. My husband chose not to use them. I hope your mother is able to buy as many wonderful days or even many more than we were. Fay

Cindy Bear
Posts: 560
Joined: Jul 2009

Hi Linda. Thanks for the kind words. You made me cry. You've made me cry before. Stop that!!
I know anger is bad and unhealthy and life is so unfair. I know that raging and railing against it won't change a darn thing. But I do think that anger has allowed me to function these last 9 mos. I sometimes think I must be a monster for some of the thoughts I've had the last year but I think it's pretty normal and natural from what some of the other posters have said. I am getting better, slowly but surely. It's a slow process I think . I have several friends my age or even a bit younger who are "orphans" now and they say the same thing. It take about 2 yrs before to come to a certain level of acceptance and comfort with what has transpired. By the way (Linda) I've been following your story off and on on the uterine cancer board and I am so happy to hear that you're doing well and in remission right now . You are a brave,strong lady. I wish I had your courage and your ability to education and instill hope in others. You go girl!!!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My sweet sister was killed in a car accident, her own fault, drunk. I remember how angry I was afterwards. Because she was young and healthy, and all her injuries were horrible head injuries, and she carried an organ donor card, and she was taken to shock/trauma center that had a Transplant Wait List database, we were encouraged to donate all of her organs. So we ended up on the 'sad side' of a heart and lung transplant, as the DONOR family, plus numerous other body organs.

It's such a hard thing to say good-bye to someone that you have been told is brain-dead, but that is being kept on life support until her organs can be harvested. My family was divided and horrified, but we went along with my sister's stated wishes. We were given the option of getting a report (minus names) that would let us know how the recipients of her organs made it through their surgery. I was the only one that wanted that information, hoping it would make me feel better. But when I got the report, all I could think was that I would gladly let all of these people die to have my sister back.

Horrible, right? Monstrous? So, please know, Cindy, that I understand that furious anger you are feeling. I hope that you can let it go. I felt a lot lighter when I stopped being so angry at the world. (((Cindy))).

And thanks for the kind words, which you can see I deserve no more than the next person! HA!

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I don't know anything about your Mom's cancer, I had non hodgkins lymphoma years ago so it's completely a different form of cancer. What I do know though it that my lymphoma was the 'bad' lymphoma - hodgkins is easier to get rid of than non hodgkins was - at least when I was diagnosed in the early 90's. The idea of it ever being 'cured' was not good and the idea of it being cured after recurrance impossible. Or so I was told then.

Flash forward to now and I am a 20 year survivor of non hodgkins lymphoma and the doctors consider me cured after not only a diagnosis of non hodgkins lymphoma but a recurrance a couple of years after intital diagnosis.

Point is that there is always hope and there are things like this happening all the time, when prognosises are just proven plain wrong. Add to the mix that there are new treatments happening all the time so who knows what is around the corner for your Mom.

Take my situation for instance. My Grandmother passed away when I was 20 (that was almost 40 years ago), and at that time (she had the same type I did) there was almost nothing they could do. Harsh chemoes were out (cobalt) as she was too old and that was about it - not even anti nausea drugs then. Flash forward 40 years later and I was diagnosed with it and here I am as a 20 year survivor because of ground breaking treatments like bone marrow transplants, stem cell transplants and different radiation regimes - all which I had.

No one knows what is around the corner in cancer treatments. Keep the faith and know that nothing is impossible. Again I don't know that cancer well but I have seen miracles happen all the time on this board and others.

Blessings, Bluerose

wonderingalice
Posts: 49
Joined: Feb 2010

Thanks for the encouraging words, Bluerose. Unfortunately we continue to get bad news. UPSC is a highly aggressive type of cancer with no proven treatment protocol upon recurrence. Median survival when it recurs is 12 months. My mother's recurrence is attacking with a vengeance. After a major debulking surgery in January, there is already a new golf-ball-sized mass that is compromising her bladder. Even the doctors are at a loss at this point, they are going to blast it with another round of chemo that they said she wasn't strong enough for a couple weeks ago, because at this point its progressing so quickly they have to try something. Maybe it will buy her some time. We were hoping for a real remission, more traveling together...that looks more and more unlikely.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I'm so sorry to hear that your Mom's cancer is so aggressive, as I said I don't know anything about that type as others do on here. Hope that she is strong enough to endure what she faces, both physically and emotionally. It's incredible what the human body and mind can deal with and with your support I'm sure she will feel loved and cared for through her whole process, whatever that might be.

All the very best, please keep us posted on how you and your Mom are doing.

Blessings, Bluerose

crovn
Posts: 22
Joined: Apr 2010

Like the subject says, "I know where you have been". My mom has brain cancer and her prognosis is not that great either. Like you it has been very hard on me, and I completely understand about how hard it is to stay positive. People used to say "stay positive" to me all the time, and I know they really have no idea what it is like.

Believe me interent searches are the worst, I used to go online and look for things that will help, but it only made me more depressed with the information that had come up.

Facing reality is a really hard thing to do in this situation, and the "unknown" is even harder to face. I know it is hard, and I am not going to say stay positive because I know what that feels like, but keep having FAITH and be there for her. That is all she probably wants right now!

Courtney

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