CSN Login
Members Online: 19

The Importance of Menitoning that you've had a recurrence on this network.

california_artist
Posts: 850
Joined: Jan 2009

A December update:

Everyone,

I don't like to be the bearer of bad news, no one does. However, I do feel it's very important to mention a recurrence. What I'm thinking is this. If everyone just hangs around til things go wrong, and then just quietly slips out of the picture, then we all have false hope that we'll be fine if we just do what our doctors say. The doctors only know how to treat this cancer according to how women are responding to the therapy. So let's say, we talk about treatment and every thing's fine and we're happy with how things are going. And then we find out we have a recurrence. Well, that might be something we would think we shouldn't share because we care about everyone on here and don't want to dash hopes. This is how I felt too. But, what if NOT mentioning the recurrence gives false hope. And what if, based on that false hope, they do nothing but what the doctor says and question nothing. Do nothing else? What then????? Has our withholding the truth just killed someone???? Is that what we want??? Assuredly not! Sometimes, it's the full knowledge that gets a body motivated to do more then the basics. My belief is that it's all about motivation. Can you be too nice? Can kindness inadvertently kill???

You've done everything you were supposed to and suffered a great deal for it, with some possible lasting side effects, in the hopes of getting a cure. And now it seems it didn't get the response that was held in front of you to get you to go through all this. I propose that rather than letting each person fall off the same cliff you fell off, that you speak up, like Linda did, even knowing it might cause someone to become fearful. We need to mention that there might be a cliff up ahead. What's that saying? Forewarned is for-armed.

What if, there are a large number of recurrences. We would then need to let our doctors and especially the American Cancer Society and the FDA know about such a development. Drugs that are not working need to have attention brought to them in order to encourage trials for newer better drugs or some other form of treatment that does work. There is a feeling I have, that the doctors do know the scope and likelihood of most outcomes to be expected in most cases. It is possible that they too are trying not to dash hopes. Aren't they falling into the same dilemma as we find ourselves in, and might they not serve their patients' health more fully by mentioning the pitfalls one can face with the current treatments and suggest they look, in addition, to other forms of therapy?

In the end, it may just be the recurrences that get the trial and research arms ramped up to get funding to find a cure. I do believe there is a cure out there. Perhaps however, just not the current one alone.

Yikes! So much for not dashing hopes. I apologize ever so sincerely. There are times when things have to be said, this is one of them.

With me or not, it needed to be said, especially when women with Stage 1, who got the full treatment recurred. Where does that leave the rest of us????????

Love me or not, I care enough for each of you to tell the truth if might lengthen and save your lives,

May we fight with everything in our power, and it is in our power, in order that we may live longer, healthier, happier lives. That's my thought for all of us for the new year and beyond. Way, way, beyond.

Claudia

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

I am with you Claudia. We share when we recur. I can't tell you how good I felt after reading Fran's blog after she had treatment for recurrance. She had such wisdom and spunk.

I just emailed Oprah and asked her to fly us all out for a show. We could meet each other, hug each other, talk to face to face. We could share about this cancer. We could fight for research and better treatment. We could put a name on serous cancer so more work could be done.

Trouble is, I doubt I have much of an "in" with Oprah.

Diane

california_artist
Posts: 850
Joined: Jan 2009

A new shirt wouldn't hurt either.

Northwoodsgirl
Posts: 201
Joined: Oct 2009

Diane, Thanks for following through on the Oprah idea.
I hope Oprah will visit the site and see what we are all about in this little sisterhood. There is so little information that women get about uterine cancer and serous cancer until it hits a person and then the education begins.
Lori

california_artist
Posts: 850
Joined: Jan 2009

I write the president, you write Oprah, We are apparently not too shy, eh.

Claudia

california_artist
Posts: 850
Joined: Jan 2009

I am actually thinking a great deal about the Yale Study. I had thought of writing them to let them know we are not seeing here what they reported. Fran was a Stage 1A, got every treatment, and recurred.

Would you please ask him for a number. I would like for everyone to ask their doctors this question a get a number for their treatment center:

What percentage of the women who take the prescribed protocol, recur within five years.
Then, ask them this question, which I think is the real question:

What percentage of women recur in less than one year.

What percentage in around six months.

My doctor told me he didn't have any idea. As this was on the day he told me I was going to die if I didn't get treatment and it was the first time I had heard that I had pap serous and not the typical uterine cancer. I was too shocked and pretty much speechless to inquire further.

But, back to my point, they must have some sort of record keeping system somewhere where you are getting treatment. Would you please keep on asking and not stop til you find someone who knows at least one of these percentages. In the end you could go to the hospital administrator.

I found a disturbing quote in the book I read, by Dr. Boik of Stanford and formerly of M.D. Anderson:

The rate of genetic change is especially great when a cancer cell is faced with obstacles to its survival.

This gave me a thought as to why people are recurring so rapidly. The cancer cells are under attack and designing ways to survive as quickly as they can and what better way to ensure survival then to spread and grow.

(Jill, I'm going to send you an email as soon as I get off here.)

california_artist
Posts: 850
Joined: Jan 2009

you know, Frances is the only one who was a fully staged Stage 1, she took all the things she was supposed to and she recurred. That's 100% recurring following chemo and radiation.
I wish we could get our numbers together and see how they track with other numbers.

I had also read a very favorable report regarding microscopic residual disease and surviaval and had high hopes for Linda. That's why I was so shocked.

I'm just trying to figure out what's going on. I can't be used even for the observation in stage 1 because I was not fully staged and have all my lymph nodes. so I am either Stage 1A or Stage lllC. Don't know which one.

kansasgal's picture
kansasgal
Posts: 117
Joined: Aug 2009

I also have a small collection of studies re: UPSC 1a since that's where my pathology report staged me. Probably the same studies you two have. Like Claudia, my 1a staging is not what I would call "fully staged" since I only had 9 lymph nodes removed and examined and did not have my omentum removed. My gyn/onc feels I WAS fully staged . . . so I am not sure how much confidence to put in any statistics he might be able to give me on patients in his own practice. I don't even know if he has or has had any other UPSC patients. I should have asked him this. At my next follow-up appt in early January I will ask and see what he can tell me. He is hard to talk with - very dismissive. At any rate, although I was staged, to my mind it is "less full" a staging than I feel fits within the scope of many of the studies - sigh!

Sally

Kaleena's picture
Kaleena
Posts: 1196
Joined: Nov 2009

Hi Claudia:

I didn't want to mention it like you said, but I too was just diagnosed with a recurrance since my initial surgery in 2005. It was very unclear. All scans were in normal range but the biopsy confirmed it. It is endometrial. My doctors where I live indicated that it couldn't be operated on. I would need radiation with chemo. I went out of state and was told at first that it might not even be cancer, but they confirmed that. They did however say that they would be able to do surgery. I believe I will do the surgery since radiation is a one time shot in this area. No one is sure though whether it was there, a recurrence or a new cancer. They are leaning on a recurrence. In 2005, I was clear. Took preventative treatment consisting of chemo and 3 brachyradiations. Did all follow ups, etc. However, the tumor which was biopsied was there since 2005. (thought it was fibrosis or something like that).

I had complained for about a year about a pain in that area. I said I didn't know if it was hemmoroids, etc. My original doctor retired. I don't think anyone wanted my case because I was NED. It has been a battle for me to find a replacement.

Most or a lot of doctors only read charts and guidelines. We are the ones who know out bodies and know when something isn't quite right. Further, it has taken me two months or more to decide MY OWN treatment. Not the treatment some doctor who just looked at my chart feels. I am not listening to a doctor who doesn't listen to me or doesn't give me options or is willing to discuss all avenues of treatment or non treatment.

Ok, sorry I am rambling now.

Hey, what about this? I was thinking we should have a Shout Out Day. Pick a day where we could all Shout at cancer, for all those recurrences, the testings, the waiting, all the stuff we bottle up inside ourselves. Just a thought.

Thanks Claudia. I am with you. If we hide recurrences, then we keeping negativity inside us and that is not good. It was because of information from this site that I was able to ask more questions and make more sound decisions. Now that is positive!

Kathy

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

I am all for posting anything that is the TRUTH. We need to be prepared. In 2006 I had no wonderful women to share with as this board is providing. The BEST word I could find on anything to do with UPSC was "GRIM" (seemed like I would research myself into a terrible depression.) So much reality and no hope anywhere on the internet stats. Now it has been updated quite a bit. We all have each other and I really hope we can share anything that we know. How many of you feel that we fit into the 'guidelines' of even the symptoms??? I know I sure don't fit. They haven't left us much to go on.

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

My immediate reaction is - please please let's be honest with one another. I would not continue on this site if I thought we were dropping out because of bad news. None of this would be helpful to me if I felt we weren't sharing information about recurrences- I don't want a false sense of security from this site. This does not mean everything needs to come out on the site. It is public and maybe certain topics aren't appropriate, but I don't know how you screen that. Posting clearly identified threads will help anyone who wants to stay clear of certain topics. Barb

sorry- I posted this originally on the wrong thread so repsted it.

deanna14
Posts: 734
Joined: Oct 2008

but... I think it is what we need to hear! I agree that we are all open and honest about reoccurance. It's difficult and scary to hear, but we also have to face reality. I am also interested in symptoms or lack thereof with ladies who have had reoccurance. I personally had mostly vague symptoms with my original diagnosis and was not diagnosed until I was already Stage IIIC.

Also wondering where Jill is receiving treatment and your doctors name? I wish my doctor was as encouraging as yours!

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

I'm glad you had such a super experience. You are IN THE WORLD and enjoying life!!! My husband and I went to Universal on Sat. and stumbled upon a Mannheim Steamroller Christmas concert LIVE (heaven) - as I was in total revelrie, I was teary eyed with the joy of the moment. Mary Ann

Outlaw_Josie's picture
Outlaw_Josie
Posts: 42
Joined: Dec 2009

Although I'm not UPSC and do not have a recurrence of my own recently diagnosed and treated uterine cancer, let me say that part of the reason I continue to read here is that y'all tell it like it is...not just the good stuff that we need to hear, but the other truths about cancer as well. Stuff we need to know.

Heck, stuff the darn doctors need to know. As someone said we know our bodies and we know when something is not right. I feel fortunate that my onc/doc said "even if something just doesn't seem right make an appointment." He's as blunt as a bridge abutment, but that's part of what I like about him. Evidently not all our docs know we pay attention.

Anyway, I found this site right after my diagnosis visit with the ob/gyn and before my pre-surgical visit with the gyn/onc doc, even though I didn't register then. I appreciated being able to read even before I knew what it was I needed.

Soooo....my vote goes for talk about it even so it's public because there might be another sumbunny out there like me.

And, while you didn't ask...y'all are my idea of true heroes living life even with Damocles' sword hanging over your heads.

Y'all rock!!!

ValT
Posts: 6
Joined: Dec 2009

I'm writing in awe of you very brave women. I've been looking for guidance for my sister in law who was diagnosed after a PAP smear about 2 years ago--had a hysterectomy and they noted cells in the pelvic wash. I think the surgeon should not have done it laproscopically...but that's water under the bridge, now that it looks like it has recurred. She did not have chemo or radiation then--because she fears she will feel worse and it won't help. Of course that's what she's saying now, too. We are also looking into some antibody therapy that was published this year at ASCO. She's not yet 60...she has 3 beautiful grand children. She has always been stubborn--you push one way, she pushes the other.
I'm guessing most of you don't have any patience for this point of view.
Thanks to you all and keep up the fight.

Ro10's picture
Ro10
Posts: 1454
Joined: Jan 2009

I don't think any of us wanted to have chemo or radiation. Most of us were scared of what our reaction to each would be. I have to say that my body's reaction to chemo was so much better than I had anticipated. I was so fearful of being so nauseated, and that did not happen at all. They have such good pre-chemo medicines that I was not nauseated at all. The radiation is scary too. I did not have any skin problems. I had very rare diarrhea. I did have some nausea with the radiation though. Never did throw up, but was just so nauseated. Maybe you could get her to try the chemo and if she does not like how she feels she could stop it. Tell her to think of those 3 beautiful grandchildren. Of course ultimately it is the person's final decision. Can you get her to read any of the posts here. That may encourage her. Good luck with supporting her decision. In peace and caring.

Outlaw_Josie's picture
Outlaw_Josie
Posts: 42
Joined: Dec 2009

My post didn't go where I intended it, but ended up 3 or up and I dunno how to fix it.

Sorry.

jnmchenry
Posts: 9
Joined: May 2009

Looks like we have agreement here. We're not good-news-only bears. I think we're encouraged that if we do all the "right" things and fight hard, that we'll have a good outcome. It mentally gets us through treatment. But it just isn't so, is it? We can only impact our odds toward the outcome. Cancer sucks. So we celebrate the good with each other, and give support and understanding during the difficult times. There's a wonderful collective knowledge among us.

Had to laugh about contacting Oprah! That would be great, wouldn't it?

Nancy

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

Nancy....I think you have summarized the sentiment exactly. None of us are so naive that we think a re-occurrence is not possible. I am a firm believer in "telling it like it is"...sometimes it is good news, and sometimes, not so good. But we all know that is the reality! AND more importantly, we are all here to support each other, through it all!

This is a great support network for all of us!!

Karen

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

Yesterday I got such a shock. I used to work with Nancy and we reconnected recently (about 6 months) through our mutual cancer diagnoses - mine uterine and hers breast. She would email about her treatments, I sent her my usual - the Simonton book and CDs. Well to make the story short - she's dead already. What the..........!!!!!!

she had Six rounds of chemo followed by those neulasta shots and she didn't tolerate the treatment well. Then she had a lumpectomy. And now she's dead!!!! I don't know what went wrong but she had mets to the brain. She was around 50 years old, single.

I'm in shock. Ladies, life is fragile. Enjoy it while you've got it. Sorry for the bummer but I had to get this out. Mary Ann

Outlaw_Josie's picture
Outlaw_Josie
Posts: 42
Joined: Dec 2009

((((Mary Ann))))

I'm so very sorry about your friend.

Yes...life is fragile and we do have to enjoy it while we have it.

As childish as it is, I often find myself wishing we'd all just live to a ripe old age, go to sleep and then wake up at the next level. Still...without the trauma of death, would we appreciate life?

And, where else would you share this but here with women who get it.

((((Mary Ann))))

Cecile Louise's picture
Cecile Louise
Posts: 135
Joined: Dec 2009

I am so sorry you lost your friend. Yes, cancer DOES suck. It's insidious and cruel and heartbreaking. And even though it will most certainly claim some of us, we still must fight and fight and never give up. Each day is a treasure, a gift. My heartfelt condolences to you, Mary Ann. I'm glad you came here to share your sorrow and vent a little.

Be well,
Cecile

california_artist
Posts: 850
Joined: Jan 2009

You make me laugh so much. Is this attitude because I told you to screw your nurse's advice this morning regarding the inflammation being only for cardiac, and sent you down the I'm mad as hell and I'm not going to take it anymore, path. Do ya feel better now? Still pissed off? You have every right to be mad. There's really not much else to do when you do everything you're supposed to do and end up dead anyway.

After I went on a rave with you, I came over and hollared some more about the inflammation thing. Think your friend's death just freaked me out too. I had to apologize for my behavior.

Hope to get together sooner rather than later. We can sit around and drink green tea like nice proper ladies and then swear like crazy over the ramdomness of it all.

Just hang in there. I still believe things will be al right.

Love ya,

Claudia

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

Mary Ann... You are right...Cancer SUCKS!! I am so sorry to hear about the loss of your friend. And I understand why you are angry! I know you will cherish the fond memories that you shared with her! I also know that you are one strong lady...and you will march on, doing all you can to be well!!

Thinking about you.... Karen

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

So sorry to hear of your loss :(

I have lost two great friends to this beast....one at age 24 due to Breast Cancer about 24 years ago now...the other to a friend and colleague at age 59 due to Breast Cancer about 3 years ago.

It is so hard...I thought I was supportive then, but going thru this now, I truly realize I had no insight into "their" world back then.

It is them I think of when I am on the Radiation table...

Hang in and I am sure you were a great strength to her.

Laurie

susie1143's picture
susie1143
Posts: 109
Joined: Aug 2009

Hi Claudia:
I agree that we need to have the bad with the good. My 3 month follow up is next month so it's back to the doctor we go.

I have had several bad experiences regading cancer within my family but also some promising results. First of all I had an aunt (father's sister) who died in 1978 from cancer. I was told it was stomach but recently told it was female cancer. Not sure of which one but care at that time was next to nothing.

Then another aunt Mom's sister)got lung cancer. We took her to Sloan Kettering in NYC. At one point, it appeared to be gone. But then a few months later it came back with a vengence in her liver. She passed away 2 days after Christmas in 1998.

A couple of years after my aunt, my Mom was diagnosed with breast cancer. This was only because me and my sister insisted that she got a mammogram. With chemo and radiation she is now in remission for 7 years.

Last is my turn with endometrial cancer. I was surprised at my diagnosis but with family history not totally shocked. When I was diagnosed (June 2009), a friend of my brother was also diagnosed with brain cancer. She passed away a few weeks ago. I was thinking Christmas morning about how fast between diagnosis and her death and how fortunate I have been to still be enjoying life.

With all this said, I plan to enjoy every moment that I can and do everything in my power to fight this cancer. Life is a path and sometimes we don't know where it will lead.

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

It's great to have you all. Many thanks. Mary Ann

Ro10's picture
Ro10
Posts: 1454
Joined: Jan 2009

Sorry to hear about your friend. It reminds us of how fragile life is. We need to enjoy every day we have. We think if it happened to Nancy, things can change so fast for us too. In peace and caring.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network