Metastatic endometrial cancer

lindaprocopio said:

((((hugs)))) & a few comments on your surgery & diagnosis
I'm sorry that you have had a recurrence so quickly after your surgery. I was surprised that your surgeon did not remove your omentum (sp?) at the time of your hysterectomy, as that is usually removed during "optimal debulking" surgery when cancer is suspected because it is such a common place for cancer to travel to.

Do you know how many lymoh nodes were removed during your hysterectome? If only a handful of lymph nodes are removed and biopsied, it is easy to get an incorrect Stage 1 or Stage 2 diagnosis (as a another lymph node with cancer cells in it could have been left behind.) .

After I healed from my surgery in late 2008, I did 6 rounds of adjuvant chemo ("adjuvant" refers to treatments done as INSURANCE to try and kill any microscopic cancer cells that are too small to be picked up on scans); and 28 rounds of adjuvant pelvis radiation; and 3 rounds of internal radiation. My oncologist wanted me to do everything in my power to make sure i would not recur, because once your cancer recurs they consider it incurable.

Even with all that adjuvant treatment, my cancer recurred in November 2009. I read all the horrible statistics online, stuff like "Once endometrial cancer recurs, average life expectancy is 12 months regradless of treatment." Well, my 'expiration date' has come and gone and I'm still here! And I am symptom-free, even though I take a mild dose of chemo regularly to keep my cancer in check. I have no pain; I never throw up; I still advise in my own business and have sleep-overs with my grandkids. Today I went out to lunch and some 'after Christmas' shopping with a girlfriend. Wednesday I get chemo again. Then I have a trip to the Dominican Republic planned with my son in February; (and I've been to Europe and the Caribbean, & the beach twice....all while in treatment!) I guess what I'm trying to tell you is; THIS IS DO-ABLE! Life is still good, still beautiful, even after a recurrence and even when it gets interrupted by chemo. Don't believe the statistics. & if your oncologist continues negative statements, find a new gynecologic oncologist. ((((hugs)))))

Lindaprocopio
They removed everything, including several biopsies of lymph nodes and pelvic wash. Everything, except my uterus was negative. I was such a low grade and stage, that chemo was not advised. The follow-up for my type of endometrial cancer is no chemo and testing every 3 months with pap smear and blood test. This is the standard. I almost wonder did they mix up the biopsies? I go to the chemo doctor tomorrow for another consult, since my second Cat Scan, and before they start chemo. I am going to ask him to explain my situation more clearly, as the last consult, I was in a far away place, of denial.

update after doctor visit
I wanted to update after my second consult with my chemo doctor on Dec 28th. The first consult, was gloom and doom, but after they did more blood test, another cat scan and confered with gyno/onc, their prognosis was at least better. They are confident that my cancer is mastastic endometrial cancer of the adenocarcinoma type. If you recall I had grade 1, stage 1a endometrial cancer and had a total hysterectomy with only slim chance of any recurrence. I don't know how, but in some way it spread to my omentum and abdominal lining in less than a year. They removed my omentum and scraped all the seeds out of my abdominal lining. My latest cat scan shows no organ tumors, and the blood tests for stomach, lungs, and breast were normal. They are going to go forward with carboplatin/toxol for chemo and then after treatments and more ca-125 tests, hoping all goes well, they will put me on megace a hormone blocker. My cancer was positive for hormone receptors, so the hormone should definitely help. They said they think they can maintain me for a good while this way. Well I hope so, because I am not ready to go.

Songflower said:

Your difficult diagnosis
I've been reading these blogs. I had metastasis to the the peritoneum, "peritoneal carcinamatosis" within a year of treatment. I felt the blow and cried alot. I have even seen a therapist for a safe place to just cry. I had chemo done, was a candidate for HIPEC and then had more chemo. I am now NED. Think about HIPEC; they debulk and strip the entire peritoneum. Then they fill the pelvic and abdominal cavity with chemo for two hours with a machine that swirls it around. In our case it is usually carboplatinum. I just finished four more rounds of chemo. Also, if HIPEC is not a consideration then seriously think about intravenous and intraperitoneal chemo; they inject this into the peritoneum where the cancer is. None of these things are easy but I gritted my teeth and did it after just finishing carbo taxol and brachytherapy. My cancer was endometrial but found to be serous on pathology. When it spread to the peritoneum it means it is acting like ovarian cancer and that is why HIPEC and Intraperitoneal have been successful.

I know it's hard to have more info thrown at you. But ask your Doctor about this. Also, I can't imagine your Doctor telling you that you have three years to live. My Doc won't even let me whine because I have so much time left and it can't be less than yours!

We are behind you.

thank you Songflower
I will ask exactly what you said. I go back to my gyn/oncol Jan 13, so I will see what he says. I think they said all that about 1-3 years because they were so shocked that it returned, and that was before they did another cat scan and the extra blood tests. Only a very small percentage of women, like 3%, that have grade 1, stage 1a endometrial adenocarcinoma have a recurrence after a hysterectomy.

They are confident that my cancer is adenocarcinoma, but I wonder about that, because it spread so fast. My uneducated feeling is that when they did the daVinci hysterectomy some of the cancer cells spilled into my abdominal cavity. My doctor said cancer loves the omentum, because of the blood supply and fat. I believe they think they got all the cancer, but I am sure they think there is still some microscopic cells floating around. I can tell you for sure that I feel good, and don't look like I am sick. I am not overweight, and don't have any real health problems, except high blood pressure, that is under control. So who knows, it is just in the cards.

HellieC said:

Hi snyderpm
Our histories are a little similar. I had hysterectomy for suspected cancer in 2001 but none was found on the pathology. I was declared cured. Then 7 years later (yes - 7 years) I started bleeding and a "recurrence" was found at the vaginal vault (a recurrence of Grade 1 adenocarcinomaa which no one had found 7 years before)!. The original hysterectomy samples were re-worked but still no cancer was found there. So I am in the tiny percentage of women who get a Stage 1 Grade 1 recurrence after hysterectomy. I had 60 Gy of external pelvic radiotherapy and all scans showed NEW (no evidence of disease) for 2.5 years until this summer when I started bleeding again. This time a second recurrence was found which had wrapped itself around my colon. I have had all visible cancer removed and a Hartman's procedure performed (resulting in a colostomy), I am now 5/6ths of the way through carboplatin/taxol chemotherapy. I still ask myself "how did I get here" from such a low grade tumor which couldn't even be seen! However no-one has told me that I can't be cured (well, not yet)and given me a time limit. We are still aiming for curative therapy. Although when I asked my oncologist if the chemo would cure it, her exact words where "yes, it is possible, but then again I wouldn't be surprised if it re-surfaced again in a couple of years". There are no guarantees in this game, but I intend to fight it all the way and do everything I can to stay healthy. I read the statistics, I understand the statistics, but I don't necesarily intend to become the statistics if I can help it!
Hang on in there.
Helen

Thank You Helen
That what keeps cirling around and around in my mind. How did I get where I am today. I had stage 1a, grade 1, endometrial adenocarcinoma,only in my uterus, and all my other female organs were negative. Now here I am in less than a year with a tumor in my omentum, and seeding in my abdominal lining. After further testing, the doctors were confident that the cancer is not from anywhere else, and it is mastastic endometrial cancer, with low stage and low grade. Am I missing something. I am going to ask some more questions on my next doctor visit, but I almost feel why bother, it is what it is. Chemo starts Jan 18. Thanks for caring.

bonniesue said:

pathology report : snyderpm
I have not been on the site much but would pick up my path slides and send them out to get a second look see. You can mail them to a specific gyne onc pathologist like Dr.
Robert Kurman at Johns Hopkins to get a second pathology opinion. Not sure where you are located and may have missed a post but also PET/CT fusion overlay which is standard in other cancer treatments. I just think that endometrial cancer is sort of downplayed which is just aggravating. Women think we are safe with pap smears every year. There needs to be more awareness. My thoughts and prayers are with you. My internist says more uterine/endometrial cancers are showing up as fewer Hysterectomies are done. How many pelvic lymph nodes were taken and did he biopsy paraaortics during your davince robot? bonniesue

More Dr. visits
Thank you Bonniesue and California_artist for your comments. By the way, my first name is Patricia, just call me Pat. I saw my Gyn/oncol Thursday, and I went into possible transplantation of the cancer during the daVinci hysterectomy. The reason I am so caught up in knowing, is that in my uneducated opinion I would rather have it spread that way then through my vessels. I asked the doctor the question that specific way. He told me, "no, I do not think that is how it happened". He said before they started doing the daVinci, and did the standard abdominal hysterectomy, they would clip off the tubes and isolate other areas for fear that there would be transplantation. But people would continually have the cancer come back, even with all their caution.

My doctor was extremely shocked that my cancer came back so quick, and said he has only seen this happen once before the way it has happened to me. That statement sure ain't making me feel real good.

My doctor went on to say, that he, the pathologists and the chemo doctor went over all my biopsies, blood tests, and scans again and came to the conclusion that what they found in my abdomen is the same cancer they found in my uterus, endometrial adenocarcinoma, but they think it is Type 2 cancer, not Type I as they orginally thought. It has to do with the p-53 gene, and I have been reading up on it, and it is not good. I hope they are wrong. They are confident that, right now, I don't have any tumors, and he said he looked at all my organs,turned them over, checked everything,and scraped off all the seeds in the lining of my abdomine, and removed my omentum.

I feel real good right now, and mostly over my Laparodomy, and even walking/jogging and riding my horse. I start chemo Jan 20.

Thanks for caring. Pat

kansasgal said:

Determining cell type must be quite difficult in some cases
Determining cell type must be quite difficult in some cases.

My type II cancer was NOT diagnosed on my discharge summary following my open abdomen hysterectomy in April 2009. Just Type I (but grade 2) was mentioned in the pathology report. The cancer was staged at 1b and characterized as endometrial adenocarcinoma with an endometrial polyp. Only 9 lymph nodes were removed and examined. None contained any cancer. My gyn/onc/surgeon told me the pelvic wash was "clean". He also told me no further treatment would be needed, but he would see me in one month for a surgical follow-up.

When I returned for my one-month check-up, I was presented with a revised pathology report. This report was IN ADDITION to the prior report. At my hospital the slides are routinely reviewed. A review of mine showed some cells suggestive of papillary tufting, Then the P53 stain was positive for serous endometrial carcinoma in two areas of the uterus. My slides were also sent to another local hospital for review, and the other lab confirmed serous endometrial carcinoma. That lab, too, noted the strong P53 stain. That report concluded with a finding of UPSC (Type II – Grade 3) staged at 1a with a benign endometrial polyp.

Following a second opinion by a gyn/onc in another state, I had 6 rounds of carbo/taxol chemo beginning about two months following my hysterectomy. I also had 3 rounds of vaginal brachytherapy following the 3rd round of chemo. I was found to be NED (per CT and CA125) following chemo and radiation. My final chemo was October 2009. I have check-ups with PAP exams at 3-4 month intervals. I remain NED. My next CT will be in April.

Here's hoping your status will be NED at the end of this year and remain that way!

Big hugs from Sally

chemo tomorrow
Thank You Sally,

I have been busy, and had a port put in yesterday, and it wasn't bad at all. Chemo starts tomorrow. Your cancer seems to have been much worse than mine, at least from what the doctor's are saying to me. But the difference between us is that my cancer has returned, and they say that makes my prognosis not as good. They still don't consider it to be high stage or grade, but like your's, my cancer seems to be type 2. I am not looking forward to the chemo. Pat

daisy366 said:

Hang in there, Pat
Just like the port, your chemo will probably not be as bad as you think - mine wasn't. You have a great attitude which will add to your success.

with prayers, Mary Ann

Mary Ann
Thank You Mary Ann, that helps a lot. Pat

snyderpm said:

Mary Ann
Thank You Mary Ann, that helps a lot. Pat

Had my chemo, feel horrible
Had Carboplatin/Taxol Thursday, and Friday got immune booster injection. I wasn't feeling too good Friday, kind of nervous like, and irritable,but able to do what I wanted, even rode my horse. Today, I truly feel horribe. I think today I feel the worst from the immune booster, hurting my bones, and I am very weak. I have been in bed most of the day. I called a nurse tonight and she told me to forget the ibuprofen and take the Lora tabs, and I did, and I am waiting for it to work.

lindaprocopio said:

The Nuelasta bone pain doesn't last too long (((HUGS))).
Those immune boosters (Nuelasta) didn't use to bother me, but now they give me waves of shivery pain up my spine that takes my breath away when I sit on some positions. I just wanted to reassure you that it typically only lasts 1 or 2 days and then you're fine. The pain is the white blood cells rapidly expanding within the confined finite space of your bones. If your white counts aren't really that low, maybe you can talk your oncologist into skipping the Nuelasta next time.

Stay hydrated; that helps a LOT with getting over carbo/taxol. Drink one cup after the next of green tea or water, stayin away from caffeine or alcohol. You'll feel MUCH better in a couple of days. I'm so sorry you feel bad today.

I had carbo (just carboplatin for me now, no taxol this time as taxol stopped working for me) on Thursday, too.

That helps
Thank you for telling me that. I also feel like I am in a fog, like you do when you have the flu. I made myself get up and move around and took a shower, and I feel better, but not a lot.