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

california_artist
california_artist Member Posts: 816 Member
edited March 2014 in Uterine Cancer #1
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
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Comments

  • Songflower
    Songflower Member Posts: 608
    I say we share when we recur
    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
    california_artist Member Posts: 816 Member

    I say we share when we recur
    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

    Ah, I'm really going to require better pants!
    A new shirt wouldn't hurt either.
  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571

    I say we share when we recur
    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

    Diane, Thanks for following
    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
    california_artist Member Posts: 816 Member

    I say we share when we recur
    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

    Could you sent a copy of the email to my email
    I write the president, you write Oprah, We are apparently not too shy, eh.

    Claudia
  • Could you sent a copy of the email to my email
    I write the president, you write Oprah, We are apparently not too shy, eh.

    Claudia

    This comment has been removed by the Moderator
  • california_artist
    california_artist Member Posts: 816 Member
    unknown said:

    This comment has been removed by the Moderator

    Good Morning, Jill
    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.)
  • Good Morning, Jill
    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.)

    This comment has been removed by the Moderator
  • california_artist
    california_artist Member Posts: 816 Member
    unknown said:

    This comment has been removed by the Moderator

    I have a bunch too, but would appreciate your.
    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.
  • I have a bunch too, but would appreciate your.
    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.

    This comment has been removed by the Moderator
  • kansasgal
    kansasgal Member Posts: 121 Member
    unknown said:

    This comment has been removed by the Moderator

    Probably the same studies
    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
    Kaleena Member Posts: 2,064 Member
    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
    pjba11 Member Posts: 188
    Kaleena said:

    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

    Stage 1C UPSC 2006
    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
    barb55 Member Posts: 91
    pjba11 said:

    Stage 1C UPSC 2006
    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.

    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
    deanna14 Member Posts: 732
    barb55 said:

    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.

    Sometimes the truth is hard to hear...
    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!
  • deanna14 said:

    Sometimes the truth is hard to hear...
    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!

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  • daisy366
    daisy366 Member Posts: 1,458
    unknown said:

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    How Awesome, Jill
    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
  • ValT
    ValT Member Posts: 6
    Stubborn Sister In Law
    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.