CSN Login
Members Online: 2

would the women who've had stage 4 uterine cancer tell us more?????

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

to the sisters who have had stage 4 uterine cancer please tell the rest of us: what kind of uterine cancer it was, what treatment you had, and most importantly, what have you done, if anything, in the way of diet, exercise, meditation, acupuncture, herbs, etc. these years??
we would so appreciate hearing more from you.

sisterhood,
maggie

lovingmylife
Posts: 6
Joined: May 2010

Maggie, I was diagnosed March 2009 prior to surgery with ovarian cancer after several months of doctors telling me I had different GI problems. On March 5th during surgery they found the large tumor was not from my ovaries but from my uterus. After a few weeks I began a regimen of Taxol/Carbo chemotherapy--6 rounds every 3 weeks. Treatment ended July 2009. Since that time all my bloodwork and scans have been normal. However; I feel the celebration will wait until the 5 year mark,,,almost at year 1.
I have been exercising which includes walking as much as I can and working for my son-in-law one day a week in his landscaping business which has proven to be the best exercise along with some sunshine.
I try to eat more healthy now and take all in moderation. I have read and searched for what foods to eat but you find good and bad in all things so I try to eat a balance. I stopped working to reduce stress and heal. I had a very stressful executive position in healthcare. I have so enjoyed the time gardening and doing a lot of housework. I am ready now to go back to work and am actively looking.
I feel a positive attitude is the number 1 item to be on our list. I feel very fortunate each day I am healthy. I look up at the sky when I walk as not to miss one thing I may see and enjoy each breath so much more. Taking time to look around has helped. I was always too busy to enjoy what I had, and it is the simple things that mean the most. Hard lesson to learn.
Not sure I gave you anything new or useful, just my experience.
God Bless,
Sandra

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

that's exactly what we all have been wanting to learn: what your treatment was, and how you have lived since. sounds like you have found a wonderful balance for yourself, and i glad to learn what you have been doing to take care of yourself. clearly, something is working right. i'm very happy for you.

may your good health be sustained. thanx again.
sisterhood,
maggie

Always Hopeful
Posts: 234
Joined: May 2010

Dear Sandra,

Thanks so much for sharing your experience and wonderful outlook. You provide me with much hope and positive energy.

I have always "stopped to smell the roses." So much so, that my children, friends and family have always teased me about my attentiveness to nature and all its splendid beauty and magnificance. I love hearing the birds chirping and singing, viewing the magnificent natural symmetry of so many trees, the soothing, rolling waves of the ocean, to name but a few. This has always brought me peace and made me feel so much closer to my protector, but now...well, now, it has taken me to another dimension!

I wish continued health...

Peace and Hope,

JJ

hopeful girl 1
Posts: 454
Joined: May 2010

Sounds like you are doing very well and you are very inspirational to all!

You mention you excerise now and everything in moderation.

Can you give us any tips for what you did while you were going thru' treatments?
Did you include exercise while having chemo? Did you drink protein drinks? Sounds like you did not work, I am on disability as well. Did you join an wellness centers and particiate in any of their activities for cancer patients like yoga, meditation etc.

I would love to hear what your protocol was.

Thank you!

Peace and health to all :)

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

My diagnosis was in Dec 07, with surgery for staging (Stage 4B) in Jan 08, followed by chemo therapy till June 08. I've continued to have a few bumps in the road, a questionable 'recurrence' not biopsied in Jan 09, a confirmation of another issue in Oct 09. No symptoms of anything however! I've read the Anti-cancer book and incorporated much of the advice, although I've always maintained a fairly healthful diet - just wasn't perfect ;-) I'm busy these days increasing my exercise - walking, jogging, hiking, golfing. Working on maintaining a more healthful weight - those few extra pounds probably do make a difference. I'm no longer in a stressful executive position. It took quite awhile for full recovery from surgery, chemo, and assorted side effects of all, but things are looking up. I am however still undergoing chemo. The ongoing chemo makes following some anti-cancer recommendations problematic; trying not to interfere with chemo activity.

However, even though I have no new 'problems' associated with recurrence, it's difficult to live as though 'cured' since tests indicate I'm not. As well, on-going chemo although much milder than the first round course, detract from a full-on return to my 'normal' life. So I just work to 'thrive' and live life to the fullest in what may be my 'new normal'. It's still a journey. But then again, life is :-) Annie

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

i'm sorry you're having to do on-going chemo right now, what kind is it? were you diagnosed with upsc? are you sure you do have a recurrence, or is it still questionable? in any case, it sounds like you're doing very well, and managing to live life to the fullest despite those bumps in the road. thanx so much for responding.
sisterhood,
maggie

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

Path reports indicate UPSC - differential diagnosis was initially breast recurrence vs ovarian vs endometrial (after an 'appendectomy'); UPSC after an abnormal Pap smear and endometrial biopsy; endometrial vs ovarian after surgery since no primary could be identified. So, I have a smorgasbord of options;-) Recurrence was confirmed in para aorta lymph node by needle biopsy under CT in Oct 09. I previously had breast CA - original in '93, local recurrence in '99. LT treatment with Tamoxifen could be factor in new cancer. Essentially, it's papillary serous CA. Initial treatment for recurrence was Doxil, after 2 cycles changed to Gemzar -hopefully after next(third) Gemzar cycle, CT scan to see what the haps are.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

annie,

sure hope that ct scan is clear. what a ride; seems like we all have our stories to tell, each more crazy, bizarre, questionable, problematic than the next. nothing simple about this. please keep us informed re: how you're doing.
sisterhood,
maggie

cathyK's picture
cathyK
Posts: 88
Joined: Jul 2009

hello Maggie, well here is my diagnosis and story.
I am reading from my reports,
Metastatic high grade adenocarcinoma
endometrial adenocarcinoma with features of uterine papillary serious and undifferentiated carcinoma
got 6 rounds (every 3 weeks) cisplatin taxol and adriamycin diagnosed in june 09 chemo july 09 to oct 09 and
had my 6 month visit a couple weeks ago. the C T paper work is on my fridge so I can see it again and again :)
NO evidence of metastatic disease detected
there is a cyst 3 cm 2 cm that they think is lymphocele
all that to say, I am feeling much better after this last visit, still have the 95% recurrance over my head but I am voting for the 5%.
still have abdomen pain from the cutting of the nerves so muscles and nerves are causing pain , being cared for by Phisical therapy,
still trying to get back on my feet and since I was off 1 year the body took its tole , tried to get back exercising and foot pain came up, found it was a progressive problem I have had for years, once that is dealt with I will be back to walking and exercising this 50 lbs added on due to no activity and steroids .
got much healthier in my food intake, and much much more water than soda.
more fruit and vegies. still have problems with remembering to eat regularly and working on that.
keeping a positive attitude, no other alternative medicines or therapies other than P.T. and exercise.
I am thankful that I am being cared for by University of Michigan. lots of people looking at my records :)
so there ya go, hope this helps and I hope to see many more chirp in that have stage 4 endometrial cancer that have 2, 3 , 4 , and 10 year success stories !!!
so have a fantastic holiday weekend, praying for you and all on this list.
it is horrible that we have to be added to this list but glad that there are so many out there to talk to and ask questions and get great answers, unlike the docs who say, everyone is different. cant give a definite answer.
thanks ladies
Cathyk

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

wow, that's quite a report. that's great news that no evidence of disease detected. couldn't be better news. sounds like you had your surgery about a year ago, as did i. i, too, still have some pain from the surgery, doctor says it's nerves reconnecting. i've had what i call roving pains, here and there, that seem to leave in a couple of days, then some new ones show up. some stay awhile, who knows? as i wrote in my update today, there was a slightly enlarged node that was detected in my ct scan last week, and we're keeping an eye on it. otherwise, everything else looked "perfect." so, lots of changes in diet, exercise, acupuncture, etc. so that if the node is cancer, which in all likelihood it is, but not definitively, then it can be staved off , or disappeared! in the meantime, i too would like to hear from more of you with stage 4, and hear your stories, and what you're doing now.

thanx so much, cathy. my best to you.

sisterhood,
maggie

agilitysteve
Posts: 2
Joined: Jun 2010

My Mother ( 83 years young) was diagnosed with stage 2/3 endrometrial adenocarcinoma at the end of April 2010, 5 or 6 weeks ago. She had a total hysterectomy on May 18, 2010. She had gone from a healthy 130 lbs. golfing twice a week to 110 pounds the day of her surgery in two months. The doctor said the cancer was a stage 5 and had spread to her lower intestine. The pre-surgery CT scan missed this. He said he got all of the cancer and only needed to take 12 inches of her colon. She had her staples removed yesterday, June 2nd.
Her brain functions have slowed severely since April. She was unable to dress herself and had difficulty walking, but still managed to feed herself. Today she can hardly walk and her speech is so slow. The colon removal has caused diarrhea so she eats 5 small "meals" a day now.

I am so afraid. Thank you all for writing here.

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

I'm glad you found us here, Agilitysteve, although I'm sorry for the reason you've joined us. I want you to know that you're not alone in this and many people are now sending prayers and positive thoughts your way. This is a very scary and uncertain time for you, I'm sure. Do you have anyone to help take care of your Mother? Has her doctor addressed her condition?

Wishing you peace and hope,

Cecile

Ro10's picture
Ro10
Posts: 1485
Joined: Jan 2009

So sorry you have joined us here. Sorry your Mother is not doing so well. It must be so hard for you to see your Mother going through all of this. It is never easy to watch someone we love suffer. I hope she can improve a little each day and get stronger. Take one day at a time. We are here to listen to any of your anxieties and fears, and try to answer any questions you may have. In peace and caring.

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

Sending thoughts and prayers out to your Mom :)

May she continue to improve each day and may she return to her "old self" some day soon.

Laurie

agilitysteve
Posts: 2
Joined: Jun 2010

Yes my Mother has good care. She is staying with my Sister, Brother-in-Law and her two adult Grandchildren where someone is home all the time. She goes for her consultation for treatment recommendation in a couple of weeks. The obgyn oncology surgeon initially said chemo 5 days a week for month and radiation 1x per week but she is so weak right now ( 2.5 weeks after surgery) I doubt that will occur soon.

Thank you all for being here and sharing your experiences.

Steve

Rribbit
Posts: 9
Joined: Apr 2009

Hi all - saw this post and felt I'd better leave my mark. Although some days I feel I don't fit into any group because I'm such a rare case. I was diagnosed with stage 4 poorly differentiated endometrial carcinoma with neuroendocrine features at age 38 in Jan. 2009. So not only do I have a wacko rare type of endometrial cancer (that is normally found in the lung by the way) but I'm also waaaay too young for this and have virtually no risk factors for this.

Thus far, I have undergone 1 hysterectomy, 3 biopsies, 1 lymph node removal and 1 straight year of chemo - 6 months on cisplatin + etoposide followed by carboplatin + taxol + avastin, both of which worked partially, but did not get rid of one pesky lymph node that kept growing. So, I convinced my Dr. to allow me to have yet another surgery to remove it in March 2010 and I haven't been back for a scan since. I'm flying free for now, have a follow-up appt. on Monday. My Dr. says he doesn't have anything else to help me at this point so it's up to my body to pull a miracle and/or me to fight it off as long as I can.

I'm focused on eating all the anti-cancer and healthy foods I can, keeping up with the fluids/water, exercising every day and I have been receiving acupuncture for 3 months now. Am also taking a slough of vitamins, chinese herbs and fruit/vegetable supplements called Juice Plus. This is all I know to do, as all the hospitals I have visited basically look at me and shake their head indicating they have nothing to help me.

janmac35
Posts: 6
Joined: Jan 2010

My heart and prayers go out to all of you. It is a rough road, but if one takes the time to be grateful for the little things, it passes quickly. I am a 4 year survival, having been originally diagnosed with cervical in 2005. I had both kinds of radiation along with cisplatin and did fine until a couple years ago when diagnosis was changed to serious papillary metasisis to my lungs and a new regimen of chemo prescribed--carbo-taxol and (oops-chemo brain loss here). Had a complete remission by June of 2009, but it came back in lungs and tummy by Oct. 2009. Went on gemstar and cisplatin. (Had 2 bouts with clots, lungs and legs both times, so am on blood thinner (lovenox).) Also had a lot of pain in tummy area and bone pain in legs and hips. My last CT scan showed clear lungs but larger tumor in tummy. I was given the choice of more chemo (which would not increase survival time or comfort) or pallative care. I figure I am close to surviving 5 years, beating the odds, so am choosing pallative care unless I learn of something that will increase survival and comfort. I exercised, walked, weights, stationery bike, etc. and tried to watch my diet even while on chemo. However, the bone pain and other later symptoms have taken that away. I think exercise helped especially mentally, and so miss the social aspect. I attribute my strength through all the treatment to diet and exercise, second only to prayers and friends' kind thoughts. Unfortunately, I have continued to expand in spite of smaller appetite. Perhaps from lack of exercise, but more likely, added water and tumor as well as the steroids. Anyway, just want to tell you all 5 years or more is possible and the precious moments in life continue if we take the time to appreciate them. Blessings to you all. Jan

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

jan,

thanx so much for your story; you've been through a lot, yet you've survived so far for 5 years, and no one really knows how much longer. i'm so glad you took the time to write; it sounds like alot of what has helped has been good diet and exercise, friends, and belief. may all those continue to hold you.

to the other stage 4 survivors, thank you as well for letting us know what you've lived through, how you've lived through it, and how you are now.

to all, the best of health,
sisterhood,
maggie

gypsy19522
Posts: 3
Joined: Jun 2010

I have had cancer for going on 3 years in Aug..Had many kinds of chemo..Had hysterectomy.. more chemo radiation on a tumor in my stomach which was successful.. still have cancer but on a 2 months time off to restore my body. waiting to hear from doc. Have sjogrens syndrom from chemo I guess.. Had infected saliva glands, which took what little taste I had. very frustrating to eat, but have to to stay alive. Was down to 111 lbs am up to 116lbs now. am going on 80 in Aug. so I guess I am lucky to have made it this far.It's a struggle every day, but prayer has helped me to keep going. Am on a low residue diet.. hve lots of trouble with bowels but am doing better at eating the right foods, after trial and error. I wouldn't wish this disease on my worst enemy, but I have lots of support from my children and husband.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

i agree with you, wouldn't wish this on my worst enemy. it is wonderful, though may not feel like it sometimes, to be going on 80, and to have had most of that time healthy, i presume. good luck with all you're doing to help yourself every day, and yes, wonderful to have the support of kids and spouse. i know i couldn't have managed without my family and friends as well.

sisterhood,
maggie

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