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Uterine/Cervical Cancer stage 4

Lori_VA
Posts: 16
Joined: May 2011

I was originally diagnosed with Stage 1B2 cervical cancer (undifferentiated carcinoma - poorly differentiated). Had radiation and chemo to shrink the tumor and then had a hysterectomy. The pathology report indicated that the cancer was contained within the uterous. My CT prior to the surgery indicated no spread. After surgery I had three treatments of carboplatin/taxol. The CT after the three treatments showed that they cancer had spread to my lungs. Has anyone else had this scenario? To make matters worse, none of the pathologists (4 in total) cannot determine if it is uterine or cervical cancer. I am extremely worried and feel that my life is over.

sitchy57's picture
sitchy57
Posts: 27
Joined: Sep 2010

Sorry that all that diagnosed mistakes had to happen to you. I will be praying for you and never never give up. Please have faith in God as he does listen and works in ways we don't always understand. Sincerely Sharon

nempark
Posts: 595
Joined: Apr 2010

Hi: Its so good to hear people speak of God and have faith in God and understand that He really works in ways that we do not understand. . What congregation do you belong to. June

MarieA
Posts: 18
Joined: May 2011

Life is pretty scarey and not at all fun at times, but it is worth the fight to keep it going. I can't relate to your experiences because i have not even had surgery yet to find out if my cancer has spread, but I can tell from your post how frightened you are. I hope you have people you love surround you, pray for you, and fill you with hope. You deserve it, keep going, focus on all that is good in life, which includes you!

nempark
Posts: 595
Joined: Apr 2010

My dear lori: I am so sorry that you are facing such difficulties with this dreaded diagnosis. Off course, it is okay to worry, but I am sure that your life is not over. I would like to tell you about a friend of mine. Hope this will be of some comfort to you. My friend was diagnosed with stage 4 leukemia, she had treatment and is now in remission. That was 18 years ago. Today, medicine is really good and I am sure you too will be able to control this disease and continue to enjoy a good measure of life. I wish I can just give you a big hug and take all your fears away. Keep strong, and do not lose faith. Talk to God and talk from your heart, sometimes it seems that our Great God does not listen or do anything for us, but just as Sharon says "He does things in his own time. Please see if you can get second opinions and keep talking to us. June

Lori_VA
Posts: 16
Joined: May 2011

Thank you all very much for your kindness. I had a pap test a couple of weeks ago and it came back with abnormal cells. Very scary, but I guess it is another hurdle to work through or around. I pray everyday pretty much all day long.

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

Hi Lori - I had a very similar thing happen. I was stage 1 - had a hysterectomy - then two years later they find this big tumor growing along my rectum - and a tumor in my lung - they did a biopsy and confirmed the cancer had spread from my uterus. What uterus??? The uterus was gone! Anyway - after more chemo and radiation here I am two years later in remission. I surprise them all every time I walk in. You will too!
Mia

HellieC
Posts: 455
Joined: Nov 2010

Similar story - hysterectomy in 2001 for atypical hyperplasia (no cancer), then 7 years later "recurrence" of cancer (what cancer?) at vaginal vault. 60 Gy of pelvic radiation and I was OK for 2.5 years. thought we'd beaten it. Then second recurrence wrapped around colon found in July 2010. Major surgery and 6 rounds of carbo-taxol. Currently NED but very early days (chemo finished in January 2011). The waters can be very choppy but we will make it through.
Helen

Lori_VA
Posts: 16
Joined: May 2011

It looks like I may have mets in my shoulder. I'm having a bone scan next week. I appreciate all of your encouragement.

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

I am so sorry to hear this. Have they ever determined exact histology of your cancer? Are you continuing with the carbo/taxol chemo?

Sending positive thoughts your way.
Annie

Lori_VA
Posts: 16
Joined: May 2011

My dr discontinued the carbo/taxol after the third treatment when the CT showed the mets to my lungs. I'm currently in a trial at NIH. I think my cancer might be resistant to the "platin" drugs. My cancer is classified as undifferentiated carcinoma and unfortunately no one can definitively say if it is cervical or uterine.

For the most part I feel fine. Do each of you still find it unbelievable that you have cancer? I am continually puzzled by feeling good, but battling cancer.

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

Yes, Lori, I quite understand the disconnect between feeling essentially normal and being told that you have a life threatening disease. I have found it difficult at times to accept having poisons infused into my body that will make me feel bad when without them I feel fine. Don't we take a pill if we are feeling bad, having problems, etc, in order to feel better rather than the other way around??? At times it seems to take a leap of faith to believe I am ill, to have to plan for all the negative possibilities, when I just want to live a normal life like all those other people. I have the added drawback of having been diagnosed Stage IV breast cancer as well 12 years ago and given a rather gloomy prognosis. It didn't pan out as they said it would so I just keep on hoping....
Annie

evertheoptimist
Posts: 140
Joined: Jan 2011

80% of the women respond to carbo/taxol as a front line therapy. That means 20% of them don't. Some women develop resistance after some length of exposure to the drugs. For some women, the drug does not work from the beginning. It's clear you belong to this 20% group. The drug combo did not work for you FROM THE BEGINNING considering that the cancer spread right from the beginning of the chemo treatment. Given this, I am surprised that our doctor is still keeping you on the same regimen. Maybe there is a very good reason for it, but based on what little I know, this goes contrary to everything I heard and read.

You may want to consider asking your doctor why he is keeping on the same regimen that obviously is not working, and has not worked from the beginning. Certainly, my doctor wouldn't have. I know this because I had discussion about this possibility. I asked him right before the chemo started "How would you know if the chemo is working and what would you do if there is an early sign that it is not working" His answer was, he would check CA125 from the beginning and see if the number is going down, and he will check the scan after 9 weeks (3 cycles). If the chemo is not working, we do plan B, which includes changing drug regimen.

So, what I am trying to tell you is, this does NOT mean that you are hopeless - not at all, not even close!!!!! It could very well be the case that this particular drug combo was not right for you. There are LOTS of different drugs. The key is to find what works.

There are tests to help you figure out which drugs work for you. It's called cell assay testing. They use tumor samples and subject them to all different drug combinations and see which drug(s) kill(s) YOUR PARTICULAR kind of cancer cells. Since you did not develop carbo/taxol resistance after a prolonged exposure (meaning, your cancer cells did not mutate to resist this combo, they were unresponsive from the beginning), your original tumor sample from the surgery is probably still good enough for assay testing (if they are kept frozen, not killed). Or, better yet, if your NEW tumors are accessible to biopsy or if there will be another surgery, you can use the fresh tumor samples to send to special labs for cell assay testing or cell death testing. One of these labs is Rational Therapeutics. There are more. You can do google search.

Don't give up. You have LOTS of options and potentially a great outcome. I am not saying this out of faith (I am not religious) or wishful thinking (that does not help), or as a pep talk (I don't know you to come up with a good line). I am saying this based on science, reason, and rational assessments of options you haven't explored yet.

Good luck.

*** PS: I am UPSC (uterine papillary serious carcinoma) 4B. I was just declared to be in remission against daunting odds - something I was not expecting - I was mentally prepared for continuing treatment. I think I got this results due to some luck (my cancer was responding well to the carbo/taxol combo), good science (a new delivery regimen that is just starting to be deployed by savvy oncologists), and proactive steps I took as a disciplined self advocating patient. I am VERY optimistic about my prognosis, not because I believe in miraculous, spontaneous healing or divine intervention, but based on reason, and rational assessment of the available options.

I am not a religious person, so I cannot say anything in the realm of spirituality, but something tells me that while you have faith in God, you can also be a very actively engaged, self advocating patient who does everything possible within her power to affect the outcome.

Lori_VA
Posts: 16
Joined: May 2011

The bone scan results were good - no "hot spots" except for my shoulder which the ortho thinks is a stress fracture, but I'm still going to get a bone biopsy for my peace of mind. Hopefully it will be good news too! I'm going to pursue the cell assay. I noticed that several folks had mentioned it in their postings. My cancer type is a little unusual, so hopefully this will allow them to pinpoint the combo of drugs that will be the most beneficial.

Thank you all for your many kindnesses.

Lori_VA
Posts: 16
Joined: May 2011

Did your doctor submit samples of your tumor for the cell assay analysis? Do you know if it works for all types of cancer? Looking on google, but I'm not the best web searcher.

Thanks!

Lori_VA
Posts: 16
Joined: May 2011

I go tomorrow for a CT to see if the clinical trial drugs are working. I am scared to death. My cancer is very aggresive and I think that every little ache or pain is the cancer growing and moving someplace else in my body. I have been praying nonstop. I could use some of your strength and positive outlook!

Thank you.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Sending you strength and a whole lot of positive wishes for a good outcome for the CT scan. I had a scare a few weeks back for a check up. It really made me worry so much. Every little ache and pain was cancer growing. I understand. Results came back all clear.

It made it better for me during this time to read the encouragment form the ladies here. Their posts brought my spirits up. I hope this one does the same for you, sweetie.
All of this is so scary. Feels like there is no control over the outcome. I find that the worst part. Can't look too far in the future. I have to just concentrate on one day at a time. I say to myself, I have today. Tomorrow is going to have to take care of itself. When the worry starts I give it to God. I pray for inner peace. I pray for healing. And I pray for all of us here.
Please let us know how the tests go for you.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Lori,

I can understand why you are so frightened and believe, it is normal! However, that does not make it any easier to deal with. Ask the office to call you as soon as they get the reports...Generally it takes 24 hours to have it read and transcribed....It is NOT necessary to wait for days/weeks to get the results, particularly when you are feeling so anxious!

Take some time tonight to try to relax....do things that you enjoy...listen to music, go for a walk, watch a movie, eat your favorite things! In other words, it is all about YOU tonight!!

Sending you big hugs!!

Karen

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Sending you encouragement and support....Hang in there and keep us posted...

Laurie

sleem
Posts: 92
Joined: Feb 2010

I continue to have emotions that come and leave. At first, it was so difficult. Life for me is framed before 'c' and after 'c'. I don't know where you are in your treatment and doctor. Did you have a second opinion and are you seeing a Gyn/Onco? Research demonstrates a Gyn/Onco has better stats than reg. Gyn for life chances. Each person must be their advocate and find who they feel is best for them. All the ladies here and I offer hope and knowledge. I feel that each of us are sisters in helping one another. I too have found so much knowledge and support from the writers.

Please know that I've been afraid, hopeful, happy,thankful, sad, courageous all sometimes in one day. Be kind to yourself for being human in all of this. I have learned everything I can about this UPSC. It is hard at times to read stuff, but it has kept me in tuned with my own illness and empowered me to ask questions and bring better results to me and for others.

KEEP your hope and fight. You are not alone. I have my faith which helps me so much.

Lori_VA
Posts: 16
Joined: May 2011

Thank you all very much for your support and encouragement. I found out on Monday that the trial did not work for me. The lung mets increased in size. I am trying to get an appt with my dr to start traditional chemo again. Any suggestions?

Thanks,
Lori

california_artist
Posts: 850
Joined: Jan 2009

This is from the doctor question thread but thought some of it might be of use to you.

I don't know how I feel about this advice and the situation you are in, I guess my basic suggestion is to think outside of the box along with considering what you doctor says.

There are some suggestions on places to go for information at the end of this.

...And here's where I get to the point. If the doctor doesn't know if the treatment he's giving is of any lasting benefit and he's giving it for the simple reason that it's what everybody does irregardless of the results, that instruction book has failed to give adequate instructions or a reason to use to product. Wouldn't you tend to agree?. I think I will, as the smart consumer, look elsewhere for what I am seeking. And what I am seeking, as I think about it, is a thing or things to do that will slow, stop and kill cancer, without killing or slowing or stopping me. Or giving me other cancers down the road.

But first I think, the most important question, why in the heck did I get cancer in the first place at this time in my life.

So, that was my first journey, which I embarked on as soon as I got home.

Sorry, I forgot what I had meant to say and got lost in the moment. What you did and what most people do when they hear they have cancer as they are trying not to faint from the news of a very serious cancer, is panic. In a state of panic a person will grasp at anything they think might help them and chemo and radiation are all we know. We don't know it might not work for UPSC at all cause upsc is mostly er and pr neg and chemos are not able to hook onto any receptors, cause there are few.

Excuse me for rambling.

Why listen to someone who is so ill informed that they tell you it doesn't matter what you eat and even suggest you eat more protein.

If you want a crash course in what to do now I would suggest these things. These are some of the things I did to get to where I am now, which is alive and well and living the U.P.:

One of the first things I did was watch the video by Kris Karr-not certain of the spelling-called Crazy Sexy Cancer. What I got from her video is a fighting hopefilled spirit and some information on wheat grass. Highly recommend it. You have to remember,it is most likelly something or things that you had been doing that let cancer get hold.

Then I got a humongous book by a Dr. Boik from the library, will have to look up the name but you can access for free on line I believe.

Then I read a book or parts of a book called The Secret History of the War on Cancer-4.99 on amazon in paperback. This helps give insight into why we are treated the way we are, just in case you haven't figured it out on your own. Watching the heads of cancer institutes fly back and forth between cancer institutes and pharmaceutical companies canc give you whiplash.

There's a dvd: Healing from the Inside Out--that just knocks your socks off. If you can't find it let me know.

The book that gives the most concise info on cancer worldwide and simple truisms, is The China Study, this thoroughly explains the impact of protein on cancer. Fascinating.

so, number one Kriss, number two Healing dvd, number three the China Study, Four War on Cancer, five boik.

and then search the internet.

WE are not the problem. We are fabulous and should give ourselves hugs. or if you have significant others, give them hugs. Heck just have a joyous hug fest and see how you feel.

email me at claudiaallen27@yahoo.com mention cancer board in the subject line

how do you spell feweee wheewe phweeweee?

I am not getting any scans, I figure I will do what I can to the sorta best of my ability, I do tend to slack cause nothing hurts, and if something does hurt----------I'm going to think some more. I won't think long if my brain hurts, that is the one area that I would consider some form of treatment for if needed.

Love,

Claudia

Oats, although an acidic food, do kill cancer cells, having orange juice at the same time ups the killing effect.

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