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Any good stats for metastatic endometriod cancer?

NJZ62
Posts: 32
Joined: Sep 2012

Hello all,

I am new to the network, although I've reading the posts for a few weeks now.

My story - I was diagnosed Sept 2010 (age 60) with Stage 1, Grade 3 endometriod adenocarcinoma, had a TAH and 3 rounds of brachytherapy (internal radiation.)

Faithfully kept all check up with appts/Pap smears. Dr. kept telling me "if it comes back, it will be in the vaginal cuff" and that with a little bit of luck, I'd be "out of the woods" in 2-3 years.

I started having problems with left kidney backing up (hydronehrosis)this May & urologist found scar tissue blocking ureter. Then right side all kicked in. I was set to have surgery to repair this late in August, but when my husband and I went to appt, urologist told me the CT scan I had just had (Aug 17) showed changes from the one I'd had in May - as in, cancer was back - lesion on my liver, lesion on my lung, and "sprinkles" in abdominal/omentum area.

SO...all the stats I can dig up on recurrent (distant) endometrial cancer are really, really bad - like 1 year survival or less????? But my new oncologist (the one who did my surgery retired suddenly this summer) said, when I told him I understood my prognosis was pretty grim, "No, this type of cancer responds well to chemo/Megace."

So, I want to believe my dr obviously, but wish I could find some data to back it up!

I am in good general health, no hypertension/diabetes/cardio issues.

Ladies - anyone have any comments/advice for me?

Thanks, Nancy

P.S. I've been admiring the wonderful support you offer each other.

paris11
Posts: 132
Joined: Oct 2010

Hi HJ,

I had recurrence with mets to liver and peritoneum in January 2008. TX carbo/taxol.

I feel fine. THERE IS ALWAYS HOPE.

Best,

Connie

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

When I asked my oncologist about statistics he just laughed. Told me many people who are diagnosed with cancer are in the statistics, even when might have passed from something other then cancer (example heart disease, not cancer related). More to it then just numbers.

WE'RE A STATISTIC OF ONE...on wall of my oncologist's office.

Enjoy each day and do the best you can -- as all the statistics in the world won't change our current situation or change our thinking.

Hugs,
Jan

NJZ62
Posts: 32
Joined: Sep 2012

Thanks Jan

I used to work for a young guy who kept a file marked "Statistics & other Lies", so I should know better, I guess.

>>>>Told me many people who are diagnosed with cancer are in the statistics, even when might have passed from something other then cancer (example heart disease, not cancer related). More to it then just numbers.

That makes a lot of sense. One thing I came across mentioned that women with EA cancer are often quite overweight, have metabolic syndrome, diabetes, etc., so all those things have got to play a role. Or much older - some of the studies had ages running up to the 80s.

Taxol/carbo - I'm pretty sure that's the protocol my doctor mentioned, also maybe Megace to squash the E receptors.

So glad I put my question out to you ladies - know I'm going to need lots of positive energy to "fight the good fight".

NJZ62
Posts: 32
Joined: Sep 2012

Really needed to hear some good news - thank you!

NJZ62
Posts: 32
Joined: Sep 2012

Thanks so much, Connie. I am very stubborn and have so much to live for - a loving husband and son, my daughter getting married next spring - this news just hit me very, very hard.

NJZ62
Posts: 32
Joined: Sep 2012

Thanks so much, Connie. I am very stubborn and have so much to live for - a loving husband and son, my daughter getting married next spring - this news just hit me very, very hard.

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

I was diagnosed with endometrial cancer grade 3 in Sept 08 - uterine papillary serous carcinoma - stage 3a. I received 6 rounds of carboplatin and taxol, no radiation. My doc told me the same thing about the vaginal cuff.

I was cancer free for about 14 months and then recurrence in lymph (supraclavicular) and had carboplatin and low dose radiation for 7 weeks.

Another 14 months and then recurrence in lymph (pelvic and para aortic). Treated with hormone letrazole which did not seem to help. Now being reassessed - I'll know more this Wed.

The long and short of it, in my opinion, is - grade 3 is aggressive and likely recurrent and the docs expect to tackle each recurrence as it comes. I would encourage you to stay positive (sounds like you are very much that) and hopeful, and enjoy each blessed day we have. I'm taking advantage of some alternative treatments - healing touch, acupuncture, yoga, tong ren and think they have helped.

Despite this nasty cancer, I consider myself to be healthy. I have no other health problems. Go figure!! More on Wed.

Hang in there and keep us posted. We care about you.

Hugs, Mary Ann

pipscout
Posts: 23
Joined: Jul 2010

Hello,

Thank you for the topic, and I wish you well. It helps me to hear from others with recurrences.

I have been hanging around the discussion group "listening" since my original diagnosis in 2010. Also grade 3. After finishing treatment (surgery/chemo/radiation/brachy) a year ago, I had a scan showing recurrence this spring. We tried Megace first but I was still having some tumor growth, so now doing chemotherapy, just started with carboplatin and doxil.

I read the dire statistics too and it is scary. I have no idea how this is going to go in the future. Other than my treatment side effects I feel pretty well. I hope to be around a long time, but in case I'm not, I decided to go to part time work (32 hours a week instead of 40) to have more time for the fun and relaxing and connecting things in life. I also decided to make sure all my legal paperwork is in order for the sake of my young adult daughters if needed, and this eases my mind.

I'm also seeing a naturopath, and doing acupuncture and just started vitamin C IV infusions. I'm trying to look on this as a chronic illness to live with and have hope about a long future.

Teresa

NJZ62
Posts: 32
Joined: Sep 2012

Hugs back, Mary Ann -

you ladies are all the best! You have been through so much, and have such a great attitude. I know UPSC is tough.

>>>>Despite this nasty cancer, I consider myself to be healthy. I have no other health problems. Go figure!! More on Wed.

Yes - that's me too(well, except for my ureters being scarred, but that can be corrected with surgery when I'm doing better with the cancer.)

I've been telling friends that I have "estrogen poisoning" :- ), because I fit the Type 1 EA "profile" so closely - early start and late end to menstruation, BMI higher than it should be - and I did HRT! I tell every woman I know to think long and hard about HRT - I took it for brutal hot flashes, but now know that a low dose of Wellbutrin works just as well.

One valuable lesson I learned with this experience - if you don't trust your doctor - if your intuition tells you he/she is not listening to you, or isn't totally engaged - RUN, don't walk and find someone else.

Thanks again to everyone for the support - you are all in my thoughts and prayers!

Nancy

Naturo
Posts: 4
Joined: Sep 2012

Hello,
Probably each individual patient has there own stat. Did your oncologist or surgeon give you a percentage chance that it will come back? My wife was give a 50/50 chance that UES would return - and it did.
It does seem that patients who have a hormone positive tumour and are treated with a hormone blocker such as Megace have better stats.

People are probably getting tired of me - but I recommend to purchase a Moss Report - as a third opinion. http://cancerdecisions.com/

Best Regards to all ....

paris11
Posts: 132
Joined: Oct 2010

I , too, view cancer as a chronic disease. Just last week the oncologist I am working with told me that he knows one woman who is five years out from 2nd recurrence. The oncologist favors IP Chemo and dose dense.

Slowly, improvements in tx are improving our survival rates.

Connie

HellieC's picture
HellieC
Posts: 460
Joined: Nov 2010

It's hard to hear "the beast" is back, but you'll get through this, Nancy.

I am currently tackling my third recurrence. The first one was at the vaginal vault treated with radiotherapy and OK for 2.5 years, then second one was at vaginal vault again plus it wrapped itself around colon - we treated that one with surgery and chemo and I was clear for 18 months, now the third one has raised it's head near to the left pelvic sidewall. I'm still here, still feeling well (like Mary Ann I'm perfectly heathly apart from this darned thing!). I also have a partially blocked ureter but I'm currently on a course of Letrozole (hormone blocker) treatment. If it shrinks the tumour back, then that's great. If it doesn't then they can put in a stent to hold the ureter open, which is a minor procedure. But the pelvic pain that heralded this latest recurrence has gone, so I'm hopeful that the hormone blocker is working.

There are many treatment options out there for you and cancer is being treated much more like a chronic disease these days. Hang on in there - my oncologist reckons that she has ladies who have been under control on hormones for years. Statistics can make frightening reading, but they are mostly out of date and, as the other ladies say, they contain a round up of everyone, including those who passed away from something completely irrelevant to their cancer.

Wishing you a successfull outcome
Helen

NJZ62
Posts: 32
Joined: Sep 2012

Thank you very much for your post, Helen.

I just met with my new medical oncologist (1st one I met with is managing my case, but does so much surgery he doesn't do chemo anymore. I will start chemo next Wed (26th.) Carbo/Taxol, once every 3 weeks. I am nervous, but also anxious to get started because my symptoms are getting worse. I am very bloated with lymphatic fluid, edema in my legs & feet, so getting pretty uncomfortable. Fatigue too - I could take a nap every day if I wasn't working!

I have 2 stents in right now and I can have them replaced every 3 months pretty much indefinitely until I get cleared for surgery.

I don't know what I would have done without this network - so good to hear all the sensible advice!

soromer
Posts: 130
Joined: Mar 2011

Dear Nancy,

I'm sorry that you have to deal with a recurrence, but it is not the end of the story.

I didn't even get to the point of "no evidence of disease" until AFTER chemo failed, I had mets to my lungs, and then went on Megace. But now that's where I am, and I intend to stay here in this status as long as I possibly can.

I also have endometrial adenocarcinoma, stage IIIC2, diagnosed in Feb. 2011. The chemo I had was doxorubicin and cisplatin, 6 rounds at 4-week intervals. I was about to have pelvic and abdominal radiation when the discovery of the lung nodules one year ago made that plan moot. But as of my most recent CT scan, in late June of this year, all the nodules are gone. Or at least too small to be detected (less than 1.5 mm).

I understand your alarm over the stats, because I was deeply upset and terrified when I got the bad news a year ago; I had also read that Megace was considered a "palliative" treatment, not one leading to a cure. To say I was freaked out would be a massive understatement. However, my gyn-onc apparently has several patients who have responded very well to the Megace, even for as long as a decade or more on the hormone suppressant alone. I hope that your results are good too.

Let me also note that I've been aggressively pursuing other remedies as well (with my gyn-onc's knowledge), and I think that the synergy among them is what has helped me regain this measure of health.

Best of luck to you for a full and uncomplicated recovery.

barbakamom
Posts: 14
Joined: Jan 2012

I'm somewhat similar to your situation. Uterine adenocarcinoma with mets to the lungs. I was just put on Megace for the one tumor I have in my right lung... It's been 18 months since my first lung surgery, so I'm still here!

Good luck to you. I'm very allergic to almost everything, so might never try chemo again, but I'm hoping Megace reduces the growth. My doctor said he had one patient on it for something like 7 years, so, see, there is hope! :-)

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