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Coping with no expectation of NED

nancygt
Posts: 86
Joined: Jan 2010

I can use any feedback on this expectation. brief history typical to many of your-surgery 12/08 followed by 6 carboplatin/taxol and external radiation 6 weeks and 3 treatments of brachytherapy, all jan-july 2009. First recurrence in para-aortic lymphn nodes 5 months after this treatment ended. CT/PET in July 2010 clear after treatment with tomotherapy radiation handled first recurrence. Second recuurence in Nov. 2010 -chemo not started until Jan. 2011 due to shortages of both Cisplatin and Adriamycin (don't get me started on that topic !). I have had 4 treatments with Cisplatin and Adriamycin -it has been brutal on my blood values-taking neupogen and procrit and still needed transfusion. But we did CT scan and while the radiologist characrertized significant reduction in number of tumors and size, he called it a partial response to treatment. When i asked my onc what he cosidered a good result, he outlined further shrinkage in pulmonary tumors but not NED. Some of smaller and newer pulmonary tumors did disappear but the ones at 9,8 and 7 mm went down to 7,5, and 3 respectively. So after a very strong drug combo considered mostly likely in efficacy, I had my fifth chemo yesterday and the discussion that NED is not an expectation and while the existing tumors may not be where future growth occurs (still may be the ability of USPC to run and hide in minuscule form through treatments) I face quarterly monitoring and probable reliance on other drugs for the future. I wonder if any of you have advice on how to deal with this "lowered expectation"as I am still reeling.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I'm really sorry about your news. Your doc if being very honest with you, it seems. Do you get the impression that you are a "short-timer" or that you face continual treatment?

I'm really unsure of what the whole NED thing really means for us with upsc. Seems to me it means, you are OK for now (or we can't detect anything now - really a more accurate condition, I think). Mt last PET was clear but is that really NED or just "out of sight out of mind" giving me a false/delusional sense of being cancer free. Those buggers can hide out like you said.

This is a chronic incurable disease according to what I've learned. My doc told me early on that I would get treatment on/off for years. And that's been the case. I hold no delusions that I will not need treatment in the future (why else am I keeping my port!!) and I fight discouragement too. I really try to stay in the here and now and enjoy the quality of life I have now.

I hope that this will not discourage you from being hopeful that you will live for many more years. As optimist wrote, there are so many things on the horizon that will help us - we just need to stay alive to take advantage of them. Your surveillance routine sounds reasonable - same as mine, I think.

Nancy, my friend, I give you a cyberhug (((((Nancy))))) and lots of prayers and well wishes. Mary Ann

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

Your cancer journey is so like my own, with our hysterectomies and 1st recurrences, etc., all at the same times. But I knew after I had my 1st recurrence that there was no cure in store for me anymore; and once the chemo drugs started failing to get me back into remission and I couldn't ever get a clear CT-scan, I was warned that I would, without a miracle, never be in remission again. I've lived with that at least 6 months now, and I've made my peace with it and I hope I can help you do the same.

Because life in constant treatment can still be a vibrant and happy life. Your oncologist will stop going balls-to-the-wall, and will factor in quality-of-life in the treatments he gives you in a way that he may not have if he was still doing whatever it took to try and get you into remission. That sounds like defeat, but it's not. You goal will still be to live as LONG as you can, but it will be to live as long as you can while still LIVING a good life quality. I have been in constant treatment for the past year, but I have always been able to go out to eat and enjoy a fabulous meal and still able to travel between chemos infusions and still able to garden and build snowmen with my grandkids and LIVE! I don't get chemos that make me throw up or cause pain; why would I? That's the blessing of this next leg of the journey. You can shift your goal to something that demands less sacrifice of you.

And I'm still here, symptom-free, with hope that I can keep this up and have another wonderful spring and summer, and that I will be alive when the next new wonder drug is available to buy me some more time once again. I think of all of the changes since I started this journey in late 2008; things my oncologist poo-poo'd back then (like PET scans, tamoxifen, Avastin, and live tissue assays); things that all have been a part of my treatment as time wore on. Things are evolving so quickly with cancer treatments; you just need to stay alive for the m next new thing that carries you forward another 6 months, and so on. & find that BALANCE that allows you to live a rich life even in treatment. (((Nancy))).

I think oncology tries to prepare us in subtle ways that we ignore, saying 'no EVIDENCE of disease' (as if they believe it is still there but just not showing itself) and saying 'remission' instead of 'cure'. But once you get past the 'punch in the gut', you'll be surprised how you can make your peace with it and be happy again. Death is inevitable and universal to ALL living things, not just those of us with cancer. It's the 'knowing' of our mortality that sets us apart. You can handle knowing, Nancy. Your journey up to this point has made you stronger and more resilient than you know. And you still have a lot of journey left, so, as they say "Either get busy living, or get busy dying"! I know you'll choose LIFE.

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

My Dr is quite noncommital. He already believes I've out-lived statistical life expectations --Huh??? He also told me when I had had 2 months normal ca125 and clean PET/CT scan (in Jan), and at that x2, 6 months apart-- that there would always be cancer cells in my body. A reality I would have to accept, I knew, but was determined to find a way to overcome. And it's that determination that keeps me going, keeps me fighting. It's 'how long can I beat this son of b**ch who has invaded MY life'. I have my up days and my down days. But mostly I try to remind myself that every day lost to worry and stress that my days are so numbered, I realize I am letting 'it' get the best of me. Every day lost to worry is a day I am not appreciating just being here and being engaged in living. I didn't get the User Manual for this disease - must have been missed in packaging - so I've been winging it for the last 3 1/2 years. Hope I get it right one of these days.

But I've learned so much from my fellow warriors here. It's an education I never wanted to need -- and yet I have learned so much and try to find a way to share with those in my life in hopes that it will make their lives fuller and richer with whatever vicissitudes they may face. Also, I have a tough tradition to follow -- my 82-year-old mother shops for and manages the snacks, goodies, etc., shop in an nursing home in her community (she has her own home and takes care of my 88-year-old Dad)! Likewise, my late 90-year-old aunt in England also did until the last months of her life and my mother's 80-year-old sister does, all of whom like to 'help those who aren't well enough to help themselves!' They are my constant reminders to appreciate every day -- in whatever shape I'm in! ;-)

Btw, my ca125 and current PET/CT aren't too pretty and it's 'chemo here I come' time again.
Nancy, I have a head start on you - diagnosis fall '07, initial treatment first half of '08 (UPSC, Stage 4). Let's fight on together.
Annie

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

It is hard to understand this disease. It apparently goes dormant and then is triggered by something. But then we have made strides. It use to be you only had a few years and now women are living much longer. I think the trick is to get it when itis active; not dormant. How we do that I don't know. But I think the more we blog and get researchers excited the further we can help ourselves and others.

Love,......Diane

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

I believe that there is more information about UPSC on this board than researchers can find in any other single location.

How can we get our oncologists to read this board and researchers to use the information that comes from our collective experiences of living with, and undergoing treatment for, this disease?

What are the steps we can take to be advocates for our lives and health? I feel lucky every day that I was diagnosed at Stage 1a and that I am a 2.5 year survivor. I don't know if I will ever feel completely safe; but I am HERE and healthy, and I want to fight for recognition by the medical community.

Any ideas on what I can do...other than referring my oncologist to these postings, which I have already done?

In loving sisterhood,

Jill

sleem
Posts: 92
Joined: Feb 2010

Keep telling our doctors. I had posted a while back a new topic about our common pre history to this disease. I feel their are commonalities between us only we can bring forth. Add your demographics to that listing. We just might find something out no one can discover but us. One thing I noticed is our general OB/Gyn's are not always up on post-menopausal women nor giving us preventative information toward symptoms that come even when we feel good. I am also going into my early 3rd year and feel days are always on the brink of hearing "I'm back" like in the movie. I am frustrated that I could have provided my tissue almost 9 months earlier for research (I did give permission to put my tissue in a research data base) before I had an official diagnosis of 1A Grade 3. My former Dr. missed the ball all the way around and delayed my help for 9 months. I dislike that researchers could have had my tissue to study that could have helped all of us and future people like us. Sometimes there is very little very early tissue to have for researchers. Dr. error prevented this.
We are stuck with this USPC and need to keep trying to improve our own circumstances and elighten others.
I am lucky so far and understand that all the information shared here is a window into my future.
We must keep educating our doctors that we have a voice and we have minds to go with our bodies. We have options.

We must keep up our spirits and never give in to the idea that we can have the opportunity to learn & help ourselves together.
When I donate to Am. Cancer Society, I comment that there should be a place to 'click other'for donations & specifiy which type of cancer such as breast cancer. Log on & let them know. I suggested a donation listing for female reproductive disease and for male reproductive disease donations on their website. As of now, people like us don't even exist for donations for research. How can funds go to our diesease if we are not recognized?

I hope for each of you who are fighting like me and informing us possible next 'people'. All of you provide so much information that help us with and support and knowledge. I am very grateful for your wisdom and courage. It is hard not to let this over take our lives. Yet, I have come to the idea that I must face up to what might or might not happen.

I hope each of you the best in each treatment and test that happens. I continue to thank you for your courage & hope for yourself and for others. I admire all of you so much.

Sisters together...

lkchapman's picture
lkchapman
Posts: 103
Joined: Jan 2011

Hi,
If you wish to donate money, there is the Foundation for Women's Cancer. They used to be known as the Gynecological Cancer Foundation. They donate money specifically to women's cancer research and they also host very informative cancer specific courses around the country throughout the year. I went to the Uterine cancer survivors course last year at MD Anderson. I would hope the ACS doesn't mind me mentioning them on their discussion board. :)
Laura

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