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doctors' prognosis

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

Ladies, I've been pondering this for the last few days - thinking of the posts from Cathy and Linda.

You know, my gut tells me that some docs tell us what we want to hear (or maybe what they want to believe/hear!!) and others tell it like it is.

I remember what my first doc told me out upsc - "it's incurable but manageable and you can have many good years of living". When I mentioned the 5 year lifespan norm, he said I think you'll have twice as much!! Well that tells me that best case scenario is 10 years, in my mind. Then comes doc #2 - "Yes, upsc is curable...". They are both good docs and in the same practice but clearly have 2 different approaches/viewpoints about this disease. Maybe one is right, maybe both.

What is considered remission?? I think we are considered "cured" if we are cancer-free for 5 years. Do we have a recurrence if it reappears before or after the magic 5 year mark?? Obviously some of us are luckier than others.

Imagine yourself well. Blessings to all, Mary Ann

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

Docs are human. I have found they want to give you hope. One doc told me this was potentially curable. He treated my breast cancer. I was resisting treatment because I have a hard time with chemo and he knew me well enough to know how to turn me into a fighter once more.

I also think we don't know alot about USPS. I remember the days from breast cancer if you had one positive node your prognosis was grim. Those days are over.

I am in a hopeful mood lately. My trip to the Rose parade revived my spirits. We ate out in funky restaurants and toured my daughters lab. I slept in. Read books. I feel better.

Diane

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

When I was diagnosed with UPSC, I spoke with four different doctors, one of whom was part of the team at Yale that developed the treatment protocol that is commonly used today.

Two of these doctors seemed interested in reassuring me, but the other two were blunt and gave me just the facts. Nevertheless, they all told me that the diagnosis and treatment of UPSC has changed radically since 2005 and continues to change. Prior to 2005, women were not adequately staged, and the most effective combo of chemo drugs had not yet been determined. Also, with UPSC affecting only 10 percent of the women diagnosed with endometrial cancer, no money was to be made from studying how to treat this subgroup.

Just the other day, I read an article that suggested that recurrences of early-stage UPSC can still be "cured." I believe that some scientists are finally paying attention to this aggressive cancer.

I saw my gyne-onc about two weeks ago and told him that I can't stop thinking about this cancer. He said "You've read the studies. In many cases, UPSC can be cured." I want to trust this information and hope for the best for all of us.

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

Diane and Jill,

Thanks to both for your reassurance. UPSC is a pretty depressing situation. I was really interested in Diane's docs comment that sometimes it disappears - do they have any studies that they can share about this. That alone gives me hope!!! And we really need to hang on dearly to that hope.

And Jill, those 50% of your docs that just "gave you the facts, ma'am" really irk me. That's the way my doc was at Moffitt. I was pretty much is terror when I left his office - "If chemo doesn't work, you'll be dead in a year" still rings in my ears!!!!

Thanks again for the dose of hope. Love, blessings and hope to all. Mary Ann

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

My Gyn Onc told me 30% of the time UPSC disappears and they don't know why. (this is my Gyn Onc's husband, I see his wife.) I was in shock at the time and didn't ask any other questions. But I thought it was very interesting even in my anxious confusion. I don't have any other info to give you on that one. They are both very good though and he wouldn't make a comment like that if it wasn't true.

I am astonished at the cold way so many of these oncologists talk to patients. Certainly they need education and interpersonal training in this regard. I am sorry for all of you who have had things explained in a cruel manner. I realize that bad news is hard to give; but there is a way to discuss it. I really don't think people should be in oncology who say things in the manner that Ihave read here. And when you are a cancer patient somethings are stamped in your mind clearly. I realize in anxiety we forget or confuse somethings, but some things are crystal clear, never forgotten. So to any oncologists who are reading this I advise interpersonal education that may be helpful to you. Sometimes we also have to ask ourselves in life if we are rubbing our fur the wrong way in the work we have chosen.

Diane

Diane

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

that although two of my oncologists did not have great bedside manner, and were interested primarily in giving me facts, the information that they gave was POSITIVE. I guess they might have felt that because the "facts" indicated that I had an excellent prognosis, they did not need to state that outright. Still, I think some of these doctors can use a bit of compassion. Why do so many of them have such a hard time pretending that we are their sisters, significant others, mothers, or other important women in their lives?

Anyway, it was important to me to clarify that none of the oncs I dealt with was out and out cruel...just certainly not warm and fuzzy. My favorite onc, on the other hand, is wonderfully kind and supportive and more than balances out the other side.

Jill

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

My gyn/oncologist was very straight with the facts at first. He seems hundreds of cases of uterine cancer each year, writes papers (there is a place online that I found and researched him when I was diagnosed, read many of the papers myself) and teaches at the University of Texas. I think doctors bring with them their own unique sense of humor and personality. My doc has a dry sense of humor. When I was diagnosed I was scared to death. I felt so fragile (not my normal state of mind). I asked what are my chances he looked me in the eye and said if you survive the surgery they are good. I took this a challenge being of Irish descent and enjoy a good fight. After a supposedly 3 hr surgery that lasted 10 hrs and removal of everything he could find in there I saw what he meant. I guess my point is that the docs see things from their perspective and we are on the other side of the whole thing. Looking back after radiation, and chemo almost finished in my initial treatment, he was being positive for him. His last remark yesterday at my appointment is things are looking good. I was on cloud 9. Looking good is great with me.

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

I forgot - do you have UPSC?? What is your stage? I like what your doctor told you. I have UPSC 3a and so far so good. I am at one year post completion of treatment and I feel good and am working hard to be and stay healthy!!!

Blessings to all. Mary Ann

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

I am FIGO 2 Stage IIIC due to one rt pelvic lymph gland out of 30 removed. I don't have UPSC that I know of, Mary Ann. I think mine is another kind. I tried to access my medical records online and they are having trouble with the site. I will look again when it comes back online. Seems like it was endomethroid carcinoma.
I am glad to hear you are doing well. I was diagnosed in Oct during my surgery. I feel fine. Am into the taxol/chemo right now. Makes me tired.
Bless you too!! Norma

california_artist
Posts: 850
Joined: Jan 2009

I never knew your doctor said that to you. mine told me that if I didn't get chemo and radiation i would be dead in a 15 months. least mine gave me a few more months than yours, but they are both jerks for saying that. Isn't hope everything????

If they take away hope, they asume we'll just line up for the only option. but the main thing is, even with the only option, if there's no hope, it's not going to work as well as it might.

hope is the thing.

hope and a fighting spirit.

i really love you guys.

cancer and all

We are just swell.

claudia

Don't you all think that this board is at least 40% of us staying alive? i do.

Thanks all of you.

kathybd
Posts: 126
Joined: Jul 2009

Dear Mary Ann
I am embarassed I haven't gotten that book to you and your tapes. Enjoyed them alot. Just got the book back from my friend and my husband is dome with it. Hopefully will get it back to you this week. Will send it to the return address on the original envelope.
How are you? Been a long time on since I have been on here.
My CT in Dec was neg, but had a DVT, and am on Coumadin for 6 mos. They are keeping me monitored for any clotting history which has been neg so far.
My husband is stable and back on maintenance chemo.
Hope all has been well with you!
Best,
Kathy
PS I got reclassified in Dec due to the "new guidelines." Went from stage 3b to stage 1b, grade 2-3.

california_artist
Posts: 850
Joined: Jan 2009

won't reclassification limit some of your treatment options?

Claudia

What new guidelines?? 3B to 1B is a very odd reclassification. Sounds almost alone the lines of the reclassification of the pap and mammogram that was done recently. are they trying to keep costs down.

On the other hand wonderful that your CT was all clear.

claudia

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

Yes, what new guidelines?? Good point, Claudia!!! You are very smart.

And I totally agree that hope and a fighting spirit will serve us well on this journey. As I approach my 2 month bloodwork, the anxiety rises!!

Kathy, Thanks for asking about me - I am VERY WELL and have my fingers crossed as I wait for test results and exam soon. I just returned from what I have been calling "extreme summer camp" in Belize - a week of physically challenging and wonderful experiences that I am proud that I accomplished. Cave exploration, Mayan ruins, cave kayaking, white water kayaking, snorkeling, paddle boarding. I was the "weak link" in our group, but everyone helped me through it!!! Check out Adventure Week at Slickrock.com.

I hope you enjoy the tapes and book, They still remain my foundation.

Blessings, Mary Ann

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

So proud of you for tackling such an adventure...BUT after battling cancer, what are we not prepared for?

Sounds like lots of fun and wonderful memories made!

Sending postive vibes for your upcoming tests!

Laurie

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

So glad you enjoyed your trip. It sounds like you had quite an adventure. Did your husband go too? I was hoping you were on your trip, since you had not posted for a while. So glad you are "VERY WELL". That is wonderful news. Hope you bloodwork comes back good. It is so good to see your smiling face. In peace and caring.

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

Actually this trip was a "girl's vacation" I took with 3 friends - I trained for many months for this. It turned out the the entire group of 12 had 10 women (half over 60) and 2 men. We were dubbed the "wild old women" by the youngest (a 28 YO young female attorney vacationing with her father).

Many laughs were had by all. Next time my husband may be allowed to come if he gets himself in shape:)

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

It sounds like you had a terrific trip....there is nothing like spending time with good friends, seeing new things and LAUGHING!! I do believe that is better than any medicine!!
It was obvious physically challenging....how extensive was your training?

Will be thinking about you as you go for your next lab work and check up. I am curious as to what lab work you have done? CA-125 was never a marker for me so I just have an annual panel of the usual blood tests.

Sending you positive vibes!!

Karen

kathybd
Posts: 126
Joined: Jul 2009

Hi Claudia and Mary Ann

I am going to ask my Doc the same thing, at my appt in 3 weeks. He had questioned putting me at 3 to start with. They weren't sure if the one cell they found in my pelvic washings was from my earlier D&C. My treatment course was done; chemo times 6 rounds and went on Megace for 6 weeks and ended up with the clot...for which we don't know what caused that. So basically my treatment is precautionary paps and CT's. So nothing has really changed, except the Stage. Once I get the info will post it here.

Mary Ann I was exhausted just reading about your trip! What a strong person you are, in mind, body and spirit. Please share.
As you have noticed, I haven't mailed your stuff back.....sorry. Promise I will soon. Work has been crazy and my daughter is graduating from college soon; plane tickets, etc.
I agree those tapes were great.

Stay well!
Kathy

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

Kathy - Please, Don't send the CDs back to me. Continue to use or pass on to someone else. I just keep making more copies and share with anyone who will use them!! (Let me know ladies if you want copies).

Re: training. I went to gym for over 3 months before the trip - about 5 times a week. Worked on cardio - treadmill, cross trainer, swimming plus weight training (had trainer set me up on the right regime). I made significant progress with time. I need to keep it up now - it's so easy for me to be sendentary and eat poorly. My first doc (who moved away) told me that EXERCISE was his recommendation to avoid recurrence. I still could stand to lose some weight.

Re: testing. I get bloodwork every 2 months and see doc every 4. This time I am requesting HE4 and C-RP to be added to the CA125 - see doc on the 19th. Fingers crossed!!!

Wishing all peace and laughter. Mary Ann

kathybd
Posts: 126
Joined: Jul 2009

Thanks Mary Ann But I do plan on sending you the book, I promised. Randy Pausch's...unless you gave up on me and got it yourself. I will donate your cds to the cancer center, infusion room where my husband goes. Thank you!! I am sending my leprechauns with all their lucky rainbows to you on the 19th. My appt for labs and Pap is on the 29th, so I will need them back by then!

Best,
Kathy

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

Mary Ann, sorry for the SLOW response. I am awed by the rigor (and commitment) of your training for your trip. You obviously worked very hard to get in shape! I am thinking I need to "Up" my exercise schedule as don't think I am pushing myself as much as I need to really reach my potential. I can see improvement, but definitely think I need to "crank it up" a notch. You are amazing...a true inspiration!!

I did request a Vit D and C-RP on my last visit to my GP...both were fine, although I understand they are suggesting that Vit D be closer to 50 than the current "norm". My C-RP was well within normal range. (I am thinking Claudia had suggested a c-rp test. I recently heard a naturopathic physician speak and she said that Vit D should be run every year and she also indicated that the new level should be more like 50. I FORGOT to ask her about Essiac tea....did you ever find out any more info pro/con from the Dr. Weil article I had mentioned??

Will be sending your big hugs on the 19th when you see your oncologist and hoping you are NED forever!!

Karen

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

I'm sorry - I have not been on this site for awhile. Thanks for your kind words. I am not quite the exercise queen without a goal to work toward. I guess I need to plan another crazy vacation. I will change my picture to one from the trip- I just thought of that.

Re: testing. What is a Vit D??? Never heard of it. My check-up was moved to the 2nd (see how important I am to the practice!!! Hmmmm). I won't know results till then - I got the C-RP, HE4 and CA125 and have my fingers crossed. I'll keep you posted.

I have not learned more about Essiac. My 42 YO friend with breast cancer - that I got it for - died recently. So I have now buried 2 friends (both breast cancer) since I was diagnosed.

Thanks, Karen. I send you lots of hugs - Mary Ann

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