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Metastatic endometrial cancer

snyderpm
Posts: 37
Joined: Dec 2009

I am horrified by what I am faced with. My stats: I am 66, not overweight, I exercise a lot, and do a lot of physical activities, like riding my horse, and jogging. In Jan 2010 I had a daVinci Hysterectomy to remove my Uterus, Ovaries, Tubes, and Cervix, although my biospy only indicated endometrial cancer. My Gyno/Oncol believes in the agressive approach. After removing everything and doing biopsies of everything including lymph nodes, and pelvic wash, everything was negative, except my Uterus, and the cancer was only at the celluar level, not a tumor. I was Stage 1A, Grade 1, and that is the lowest. Six months later my CA-125 was 57 and in Oct it was 325. How can that be, I said? After a Cat Scan that showed a mass on my Omentum and around a lymph node in my pelvic area, I was informed that I needed a explotory Laparotmy. I Gyno/Oncol felt that the lymph node was probably just some scar tissue with fluid from the biospy, but the Omentum probably had canter. Well they did their thing, and I have metastatic adenocarcinoma in 7 areas in my adominal cavity, but only seeding, except for my Omentum that had a tumor, and they removed my Omentum. I will probably start chemo next week, and it will be the Carbo/Taxol combo every 3 weeks for 4 treatments. I am flabergasted, or whatever, because my Gyno/Oncol was so confident that my original cancer was meaningless, and now they give me 1-3 years. I cry everyday, and so does my husband. I have always said I want to know when I am going to die, but now I can't face it. Please comment.

Lisa 00
Posts: 108
Joined: Jul 2009

I'm sorry for all you've been through emotionally and physically. I just wanted to say that you may want to consider a second opinion. Sometimes just getting someone else to talk to helps and gives you a different take on things and hopefully some new information about your case. I ended up having reservations about my first gyn/onc and found that the second opinion, i.e. my new gyn/onc had a much better handle on things for me.

My (new) gyn/onc said that uterine cancers of the UPSC, sarcoma and clear cell types are the hardest to get rid of. They are the most aggressive. I have been reading boards and such for a couple of years now regarding uterine cancers, and it looks to me like endometrioid adenocarcinoma can respond very well to treatment. But everyone's body and everyone's cancer is different so nobody can tell you how you will respond. You just don't know until you go through the chemo and radiation, how well you will do.

Have you talked to anybody about IP chemo? That is chemo that is given directly into the abdominal cavity rather than into the vein. You didn't mention radiation. Have they told you that you will get radiation following the chemo?

I wouldn't let this destroy myself emotionally just yet. And if it is endometrioid adenocarcinoma, I'm surprised that somebody told you 1-3 years before you have had any treatment. Just my layperson opinion.

And why are you getting chemo only 4 times? The usual protocol is 6 times. Are you in poor health?

snyderpm
Posts: 37
Joined: Dec 2009

Thank you for your comments. My health is real good except for the cancer. What is UPSC? I have been thinking about a second opinion, but the gyn/oncol I see is suppose to be the best at this, but I am still considering it, but don't know to see.

I also should have added that they did another Cat Scan Wed just of my chest, to get another look at my lungs and whatever. I was pushing for it, because I used to smoke heavy, but quit 26 years ago.

The seeding that I have is in my peritoneal, in the right upper quadrant of my abdomen, on the outside of my bowel, small intestine, and a couple of other places close by. I think the chemo doctor said with the seeding it is actually more difficult because they are little seeds spread out, and I don't think radiation would work for this. The 4 treatments is just their starting point, and they also talked about hormone blocking drugs they intend to try on me. On my first cat scan, all my organs were clean. But I was told that tumors have to be a certain size to show up on the cat scan, and I guess that is why the seeding didn't show.

Lisa 00
Posts: 108
Joined: Jul 2009

You can call your health insurance company and ask them who are the other gyn/oncs in your area. You really should get a second opinion. It sounds like your gyn/onc is a little cavalier in his opinions regarding how to treat. A cautious doc would have given you the chemo the first time around. Also, everyone on this board and everywhere I look is prescribed 6 rounds of carbo/taxol to start.

snyderpm
Posts: 37
Joined: Dec 2009

Yes, I am going to look into that. My gyno/onc said I would get 4-6 months of chemo, and the chemo doctor said he wants to see what happens with my CA125 and Cat Scan as we go along with the chemo. I really can't remember all the details, because they tell you so much, and I was so spaced out over everything, I am not really sure.

nempark
Posts: 579
Joined: Apr 2010

I was dx with stage 1a grade 3 endometrial in Oct, 2009. DaVinci in Nov. My first Gyn told me nonchalantly, "oh you have some cells, cancer cells in the endometrium, then she said just have a hyst, she rubbed her hands together and said 1,2,3 done over with no further treatment. My second opinion with sur/gyn/onc did further tests, said "total hyst, including the omentum and just to be on the safe side, 6 sessions of Carbo/Taxol. I am now one year in remission. I still have anxieties and I still cry because of all the things I have read on the internet. But it is comforting to know that there are people out there who have been told that they have 6 months to live and are continuing to live and enjoy their lives years later. I have a friend and this is first hand, who was told that she had 9 months to live she had leukemia, she refused to do chemo and did herbal that was 16 years ago. I have heard so many things about Chemo... the truth is I had my sessions and was not sick even one day, did not even lose my appetite. So each one of us will handle our situation differently. Who are they to predict how much time you have? They do not know. It's okay to feel sad and it's okay to cry. Cry, but you have to start thinking positive and gear yourself for recovery. Be careful with your husband, my husband got sick immediately after my dx,he is okay now. Please take care of yourself and I pray that you keep positive and enjoy each day of life. Hugs and comfort to you and your husband. J.

snyderpm
Posts: 37
Joined: Dec 2009

What is dx? My gyn/onc was sure I was good to go, after he took out everything, because I was such a low grade and stage, and I showed no other cancer in my pelvic area, everything tested negative. I guess he didn't think I needed the chemo. He also said that he didn't think the Carbo/Taxol would bother me much, and I could do whatever I wanted. You know once the cancer gets outside your pelvic area it is incurable. I just can't come to grips it. I will see the chemo doctor tues 28th for the cat scan and blood tests findings. Thank you for your kind words.

nempark
Posts: 579
Joined: Apr 2010

Dx is the language we use now for diagnosed. Remember cancer cells are really minute and the scans don't always pick them up. Yes, my first gyn said that I did not need chemo, but the second Gyn was more aggressive and did prescribe it. Ask for copies of all your activities so that you will have them when you see another doctor. I know the waiting period is like a death sentence in itself, but what else can we do. We all on this board know exactly what you are going through, but as serious as it it and devasted as you are, you will see as you face your journey, you will begin to face and accept this dreaded situation and it gets better. Just a little warning before hand with Carbo/tax you will lose your hair, so prepare your self, that's another shock, the good thing is as soon as you've finished your treatments it start to grow back. My sister, illnesses is one of the cycles of life, if it dosn't happen now, it will happen later in life, at least you are still young and have a very supportive husband. Take a pen and a pad with you to the doc and write down everything because you will not remember. you will be in a fog. We on this board all understand. I just wish I can give you a big hug and squeese all that fear and illness out of you. Be positive, start your journey and tell yourself that you will conquer this. My sincere comfort comes your way. Please keep us informed about the progress. Love and comfort j.

Double Whammy's picture
Double Whammy
Posts: 2259
Joined: Jun 2010

From everything I've read and been told, typically no adjuvant treatment is given for this low grade and stage, except follow-up pelvics, Paps, and sometimes CA125. There is a very small chance of recurrence, but obviously there is a chance. I'm so sorry to hear that you were in the small percentage of women who have a recurrence. There is a reason we have follow-ups and they're scarey no matter what our stage and grade.

I was Stage 1, Grade 1 and am only having regular 4-month follow ups. I worry (because that's what I do) if that's enough. A good friend got her dx a couple of months before me. She was Stage 1, also, but Grade 3 and the tumor had grown over 1/2 way through the wall of her uterus. She had chemo and internal rads. While we were both Stage 1, the grade of the cells and the amount of growth were factors in whether adjuvant treatments would be needed or not.

It's wonderful to be under the care of one of the best, but remember s/he is only ONE of the best - there's more than one. If you seek a second opinion, do your research, get advice from others (this is a great group), and try to see another one of the best.

BTW, it is possible that your doctor has consulted with a colleague (other than the tumor board) about you. We often forget that these people do talk to each other if their egos aren't too big!

Sending my prayers and best wishes your way. Please keep us posted about your decisions. We're all here to offer our support along your journey.

Suzanne

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

I'm so sorry about this crisis and trauma you are going through!! Cancer is indeed scary and we have every right to every emotion that evokes.

I was diagnosed with upsc, uterine papillary serous carcinoma (a grade 3 rare and aggressive cancer) over 2 years ago. Like you, I was very healthy and had no risk factors!! I had the standard chemo treatment and then was in remission for about a year before getting treated for recurrence in my lymph system (I've had surgery, chemo and radiation).

I want to reassure you that you and I have many treatment options before someone can say we have "1-3 years" - and noone really knows these things anyway. It is unfortunate that you received that message. I remember my 2nd opinion doc telling me, "if chemo does not work, you'll be dead in a year!". I had lots of tears after hearing that one.

I've read many times here that "no one is a statistic". So let's both take that advice and do what nempark says - stay positive. It really helps for us to have hope and not doom and gloom thinking.

There is alot of anxiety as we WAIT for treatment and test results. I encourage you to LIVE each day and have fun and don't be just a cancer patient!!! I am waiting for my PET/CT results this week that will tell me if my treatment worked or not. So I ask for your prayers and I will pray for you too as we both continue on this path we are on.

God bless you. Enjoy a blessed holiday. Mary Ann

PS. In my opinion, the hair thing is the least of our problems. A couple of good things about it - it's easy care and people treat you very nice!! :)

Lisa 00
Posts: 108
Joined: Jul 2009

Snyderpm,
MaryAnn is better than I at expressing her thoughts. She gave you some great advice. Stay positive, and I would disregard the 1-3 year statement. You will lose your hair with the chemo treatments, but I found that that was the most disturbing part of the chemo. There are 'cold caps' to help deter the hair loss on the head if you're interested in trying that. I waited until my hair started to come out, about 7 days after the first infusion, and I used hair clippers to clip it down to stubs. Then, over the next months, the stubs will even fall out.

Personally, having had endometrioid adenocarcinoma that was, most very likely in my lymph nodes, but undetectable on the CT scans, I think you have a good chance at beating it. I say that it was in my lymph nodes, not because I was surgically staged, because I wasn't, but because I had developed a bit of lymphedema in one leg a few years ago that has no other explanation.

So, stay positive, take care of yourself during the chemo and please don't let it get to you too much as you haven't even been through treatment yet! Chemo really isn't that debilitating. You will be able to still do a lot!

The infusion alone will take 5 hours, so you will be at the doc's for probably 6 hours. They didn't tell me that when I went for my first one and I didn't bring any food with me. Also, socks or slippers are nice to wear during the chemo. You will be getting up a lot during the infusion and going to the bathroom because of the volume of fluid that goes in. And the nurses will take good care of you. I have found that, while I am guarded when it comes to doctors, nurses are the best.

Let us know how you do!
Lisa

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

Hi snyerpm, your diagnosis almost mirrors mine. Now 63, active (I also ride - or rode) overall very physical and health conscious. Then wham! I ended up with a total hysterectomy - they decided it was stage 1 and no further treatment was necessary. Then two years later I jumped to stage 4 metastatic - with a tumor along my colon and one on my lung- both metastatic uterine cancer. Everything rushed along after that. I refused surgery because they thought they might have to take my rectum along with the tumor. I had the 6 rounds of carbo/taxol - then a few rounds of doxil - numbers stopped responding and they said I'd be dead in 9 - 10 months unless I had radiation. With radiation they said I'd live a little longer. Well, that was a year and a half ago and I'm still here and nowhere near dying. I now find out that they don't really have a clue. It's basically all a mystery to them. Turns out there are a lot of mysteries out there - most of the women on this chat line have had several reoccurances and are still going strong. I work full-time, and although slower and tired, get around fairly well. My advice is to just take things slowly. One step at a time - sort of look before you leap and really understand each step. I think I was in a fog most of the time and was taken up with their rush. Do a little research - get some other opinions. The most significant thing I had was the first chemo - i felt better after chemo - achy - but in less tumor pain - which was lovely. As Lisa said, chemo nurses ar the BEST! Anyway, I remember how scary the whole thing was and feel for you.
xo, Mia

sammy1234
Posts: 4
Joined: Jan 2011

Hi lociee,

I was just diagnosed with Stage IVB endometrial cancer (serous papillary type). You can imagine that I am devastated. My doctor referred me to a clinical trial using avastin, which has serious and deadly side effects. I won't be treated with avastin, because of what I have read about it. I am planning to pursue chemotherapy with with Paclitaxel and Carboplatin. Would you have any suggestions from a layman's point of view? I am 57?

laura25's picture
laura25
Posts: 155
Joined: Mar 2011

Lisa, Thanks for the positive words... I was recently dx with endometrioid adenocarcinoma stage IVa grade 3. I am 45 years old, run 2 miles day, eat right and have a child. So this dx smacked me in the face. I started carbo/taxol 2 weeks ago. I will have between 6 to 8 treatments 3 weeks apart, with a PET scan after every 3rd treatment. Its so frightening, I keep looking at my 10 year old and think this can't be happening. So again, thank you for the positive words.

nancygt
Posts: 86
Joined: Jan 2010

Like many of the women on here, I have stage 3, grade 3 papillary Serous, have had full surgery,chemo twice (not nearly as bad as I anticipated)and three different rounds of radiation-external wide area pelvis, brachytherapy and most recently IMRT (amazing and relatively new technology worth reading up on).I had 1st recurrence 6 months after end of radiation/chemo sandwich and then second recurrence 4 months after clean PET scan following IMRT radiation therapy.
First, doctors rely on statistics that are out of date based on new treatments. We must be very cautious with USPC as it was only sepasrately diagnosed 30 years ago, statistical base is small and early treatment did not recognize its agreesive nature and ability to recur. Even the Amer. Cancer society book tells us that USPC accounts for less than 55 of cases bot is responsible for most ofn the deaths.
I had second opinion at M.D. Anderson when i saw those statistics and was freaked out because I had my first recurrence. All the doctors were frank that once it recurs, it will not be cured but is treatable. They have had patients where stats say life expectancy should be 2 years but many patients now alive after 8.10,12 years- not without recurrences and treatment but still with quality of life.I also read the Ovarian websites as my oncologist tells me that UPSC patients are so much more similar to that cancer than most uterine cancer-and you will find many ladies there with multiple recurrences who fully understand "chronic but treatable". I wish I could find the article from Cure magazine last year where they write about coping with chronic cancer - I sent it to my friends and family and apparently did not keep a copy for myself.They say that many cancers that were labelled terminal are now labelled "chronic" and an entire new attitude and support system is being created so patients don't overreact (and maybe doctors need to understand this better) and can accept that we will live longer than backward looking statistical estimates, that we can still have joy in our lives and will have good stretches and bad stretches where cancer will impact our remaining life but doesn't have to rule it.
just recently in September my dear friend who has stage 4 lung cancer and my other good "healthy" friends had dinner to celebrate my birthday. My cancer buddy and I know we are unlikely to get normal life expectancy for U.S. female (80 years old). So every six months-her birthday is in March- we will celebrate what we have named as SPLEAB- Shortened Projected Life Expectancy Additional Birthday (I am 61 and she is 56).So with doubling up annually with 2 birthdays,if I get the 8 years my oncologist feels is entirely possible, I will celebrate my 80th SPLEAB birthday in 9 years and promised to take every one at that dinner to Las Vegas to celebrate.(And if I have to pay for that trip, I will be the happiest person on the face of the earth). I know that may seem like a small -and perhaps somewhat silly- ritual but it is one of the ways you find to live a full life in spite of this ugly disease.And even if I am fairly certain it is the cancer that will eventually get me (not likely it will be getting hit by a bus like many well intentioned people point out), I don't know when (just read about all the people still making it despite dire predictions and statistics)and I intend to cram as much living in to what ever time I do have.I start 8 rounds of two drug chemo the beginning of January for the latest recurrence and while, I do not look forward to it, I am glad there are still drugs to try and glad for all the good practical advice I get on this website (fur lined crocs,etc) and for all the inspiration from the battle scar5red but still hopeful survivors.

snyderpm
Posts: 37
Joined: Dec 2009

I thank you and everyone else who has written to me, and the last few days have been the best days I have had since early November, because of all of you. I barely shed a tear the last few days. Please tell me what exactly does UPSC stand for. The chemo doctor really rocked me back when he said if I had this cancer in my lungs he would give me, at most, 1 year. The only tumor I have had since the matastatis was in my Omentum that was taken out. The rest of the cancer is seeding, and I believe they scraped all that they saw off the various locations. The chemo doctor said it is actually more difficult to deal with than a tumor. I don't really get it, but I was in a fog by the time we got to that part. I got another Cat Scan last week of just my chest area, and I go back to the chemo doctor Tues 28th for another consult, and then start chemo. Most of the people on the discussion board started off with much more cancer than I did, so it is so shocking that I ended up with so much more cancer in really about 6 months.

kansasgal's picture
kansasgal
Posts: 115
Joined: Aug 2009

UPSC is a grade 3 cancer with the full name of Uterine Papillary Serous Carcinoma.
It is a very aggressive and highly recurrent type of endometrial cancer.

Have the slides from your hysterectomy been reviewed again to see if perhaps there is an additional cancer to the original grade 1 cancer identified, or is your cancer still being identified as just the grade 1 cancer? You might ask your chemo doctor for his/her opinion of the grade at your next visit.

Hang in there and find out all you can. Make a list of questions before you go, and take someone with you to make notes of all that is said. Give that person the list of questions and be sure all your questions are addressed. My husband and I attended meetings with various doctors together, but we also took our daughter to act as our "scribe". She was able to be more objective while our minds and emotions were reeling.

Super big hugs from Sally

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

I like your thinking and rituals. It sounds like you and your friend are making the best of this whole situation - with joy and gratitude.

Mary Ann

Double Whammy's picture
Double Whammy
Posts: 2259
Joined: Jun 2010

Snyderpm - I forgot to mention that I'm so impressed that you jog at 66. I used to jog even in my early 50's (back in the day . . .). At age 63, I can't even imagine starting again. Now I walk. Maybe your healthy lifestyle and low risk factors did not prevent you from developing cancer, but you are physically fit for whatever they throw at you. I think being as physically fit as we're able to achieve can only help us endure treatments and effect our recovery (this is my opinion, not based on any medical knowledge).

Suzanne

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

Sorry TO hear about your cancer, but know you've come to a great place for support. These gals on here have been my life line for months.

I'd like to comment about statistics...don't follow them. Many of them aren't updated,and docs try to follow but not very accurate. When my doc wanted to tell me the statistics on my stage 3 cancer, I plugged up my ears as didn't want to hear.

Know that many people are told they've got a short period of time to live, and many years later still a walking miracle. I can list on both hands people who were in this situation and some with a stage 4 cancer.

As my oncolgolist has posted on his office wall ---

YOU ARE A STATISTIC OF ONE......

Best to you and keep smiling as life does get better.....
Jan

nancygt
Posts: 86
Joined: Jan 2010

I would like to second the message from kansasgal about double checking the pathology. With USPC (Typically grade 3) it was only separately diagnosed around 1980 and a lot of early mistakes were made in both diagnosis and treatment and it is still an evolving picture.. Since i am an admitted "info junkie", I read gynological oncology journals,etc. Now they are saying if you have only 10-20% USPC cells. the cancer will behave like grade 3 USPC and should be treated as such. My doc at M.D. Anderson confirmed this to me. If 80% are grade 1 and a small % are grade 3, the pathology report can be unclear and the doctor should discuss with you why a grade 1 cancer is behaving so aggressively.
Also if you have recent tissue or cells, you sgould consier tissue assay as it can shed light on which chemo therapies may be most effective.
And I would certainly ask why he said that about your lungs-my friend I mentioned was diagnosed with Stage 4 Squamous Cell Lung Cancer 5 years and they have told her she would not make it another year at least 4 times.They could never remove her biggest tumor (it had eaten away part of her breastbone) and she has had surgery, radiation several times, plenty of chemo and she is still hanging in there.We went on a Carribean cruise with 2 other friends in the spring between treatments and while we strolled a little slower for her sake, we had a blast. Do not hesitate to get second opinions - I went to MD Anderson ande while they confirmed diagnosis and original treatment plan, I ended up changing gynoncologist locally over how he handled their recommendations for future treatments (and feel much better about the new dcotor). It is your life and you should feel free to ask questions, fully participate in decisions and ocasionally be "humored" (my new doc did not think I was HER2/Neu positive but he performed the test anyway so I would know if Herceptin was a possibility and I could start dealing with what that might cost if we ever got there - I was not positive but it was good information for me to have.)

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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)))))

snyderpm
Posts: 37
Joined: Dec 2009

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.

snyderpm
Posts: 37
Joined: Dec 2009

I am glad you mentioned that, because I was wondering the same, but no one has covered that effectively. Originally, and even now, the Pathologist list my cancer as Adenocarcinoma. In my January 2010 report stated" Tumor Type as Endomertiod Adenocarcinoma of Endometrium. Tumor size: No gross tumor identified, but microscopic tumor involves much of the endometrial surface. Grade 1, and 1mm of invasion. Get a ruler and look a 1mm, not a whole lot. The stage was 1a, the lowest with cancer involved.

If you look at the Pathology report as of 11/22/10, one day after my exploratory Laporodamy, I have Metastatic Adenocarcinoma present in seven places in my abdominal cavity, with a tumor in my Omentum, that they removed. So they are no upgrading the type of cancer I have, but my prognosis is poor. I feel like, am I a fool, does anyone know what they are talking about?

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

A second opinion on cancer cell histology could be helpful. As well, since scan has shown tumor in omentum, the biopsy of that is certainly indicated. My initial indication of.problem presented as appendicitis. Path report just described as adnocarcinoma thought to be metastatic breast cancer. Then endometrial biopsy came with UPSC as did multiple biopsies in debulking surgery - Stage IV UPSC vs. Stage III ovarian ca. First biopsy made no mention of the papillary serous type of cells.it is not always that clear as tumors can be mixed type. Although I do hope it is right and cells are just grade 1.
-- Annie

tattooedtxgirl's picture
tattooedtxgirl
Posts: 61
Joined: Sep 2013

nancy,

 

That's fantastic!! I like that you celebrate SPLEAB! 

I am finding new ways to live and stay positive.

All of you ladies are truly an inspiration!

 

Hugs,

Crystal

snyderpm
Posts: 37
Joined: Dec 2009

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's picture
Songflower
Posts: 632
Joined: Apr 2009

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.

snyderpm
Posts: 37
Joined: Dec 2009

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
Posts: 425
Joined: Nov 2010

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

snyderpm
Posts: 37
Joined: Dec 2009

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.

HellieC
Posts: 425
Joined: Nov 2010

The important thing is that the recurrence has been discovered and the treatment plan for you is in place.
We will both always wonder how it happened to us,, won't we?.
I can't imagine where my recurrent cells appeared from. Neither my surgeon nor my oncologist can explain it. My only thought is that when they did the original D&C before diagnosis, some microscopic cancer cells were scraped out with the womb lining and left at the cervix area and then when the hysterectomy was done two weeks later, those cells ended up being "sewn" into place when the vagina was detached from the womb and the top was sewn back up. but we'll never really know.
Perhaps we should start a club for the "3 percenters" (those with low stage low grade who have recurred). We are a very select group!
Will be thinking of you on the 18th.
Helen

bucky1
Posts: 2
Joined: Apr 2011

I to had a tumor in my uterus stage 1. I had a complete hysteretomy and they checked my lymph nodes and found no other cancer. I had no treatments. One year later almos to the day I started spotting from my bowel. I thought I had a ulcer. They found an 8 inch mass in my pelvic area in the omentum. How could that happen I asked. They called it a recurrece. They said it was probabley there a year earlier but not scannable with a cat scan. I have had 15 radiation treatments and 6 chemo. It shrunk to one inch. I go back to the cancer doctor in two weeks to see what the next plan is. The chemo doctor wants to take another scan in three months and just watch it.

california_artist
Posts: 850
Joined: Jan 2009

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california_artist
Posts: 850
Joined: Jan 2009

What is your first name? Anyway, I too have UPSC, but have approached it from a perspective of-there are things that can allow cancer to get a hold and what are some of the things I might be able to do to make it the most difficult for cancer.

The website is for one of the most helpful, useful information you can do to help yourself throught this while you are figuring out what steps you should take on the medical front.

http://www.dailymail.co.uk/home/you/article-1025497/The-anti-cancer-diet--introducing-healthy-new-way-life.html (highlight, copy and paste url in bar)

My first thought was also that during the surgery some of the cancer cells were released into the abdomen.

Take some time and look on the net for information of those foods that work with your particular chemo to make it more effective.

I am in sympatthy with you and your fears. It is rather like getting hit with a bat upside ones head, isn't it, you tend to be just stunned for quite sometime.

Love and hope to you,

Claudia

I don't knowo if anyone else suggested this, but a PET/CT scan is not only more accurate in lighting up cancer, but exposes you to much, much less radation. If you have not had one I would highly recommend that you do.

You can email me at claudiaallen27@yahoo.com if you feel like it. I only read emails at the library once or twice a week, but will respond as soons as I can.

Do take a little time and go to the website. He is now affiliated with M.D. Anderson Cancer Center and highly respected throughout the world.

bonniesue
Posts: 126
Joined: Apr 2009

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

snyderpm
Posts: 37
Joined: Dec 2009

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's picture
kansasgal
Posts: 115
Joined: Aug 2009

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

snyderpm
Posts: 37
Joined: Dec 2009

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's picture
daisy366
Posts: 1493
Joined: Mar 2009

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

snyderpm
Posts: 37
Joined: Dec 2009

Thank You Mary Ann, that helps a lot. Pat

snyderpm
Posts: 37
Joined: Dec 2009

Thank You Mary Ann, that helps a lot. Pat

snyderpm
Posts: 37
Joined: Dec 2009

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's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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.

snyderpm
Posts: 37
Joined: Dec 2009

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.

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

I had a hard time with these drugs; don't feel like a failure. I had to take steroids the night before, during chemo, and orally for a week at home. I had to start pain pills 12 hours after they gave me chemo and continue them around the clock until about 7 days when it wore off for me. My girl friend took this regimen and went to school to teach the next day. I felt frustrated for myself but then decided my job was to figure out how to care for these reactions. I hated taking pain pills but really did find that taking them regularly helped me get through chemo.
Love, Diane

snyderpm
Posts: 37
Joined: Dec 2009

I am truly sorry for you, and I hope I don't follow in your foot steps. Did you get an immune booster? What pain pills did you take? Pat

snyderpm
Posts: 37
Joined: Dec 2009

For information purposes, I wanted to update my condition, and ask some questions. I had chemo Thurs 20, carboplatin/taxol, and then Friday 21 had the nulesta? I had a lot of pain from the nulesta, and it ended Tues eve. I haven't taken any pain meds for 36 hours. The problem was I wasn't taking enough pain meds, because when I did, I could stand it, but I only did that the last day. I just didn't want to take a lot of meds. I don't want to go through that again, and I would rather die. Anyway, I have also been weak. What are the worst days for people doing carboplatin/taxol every 3 weeks? I was told about day 4,5 and 6. Also, will I get weaker with every chemo treatment? Thanks for your comments.

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

I wonder why some of us have neulasta and others not - I am one who NEVER got this shot after chemo. I would encourage you to discuss the NEED for this with your doc. It seems that some docs order routinely rather than out of necessity - mine is conservative. I hope things get better for you. I think it is smart to limit the amount of medication.

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

I agree with Mary Ann....ask you Dr. if it is really necessary! I didn't start using Neulasta until I got to the point where I could not keep my counts up and was delaying treatments. In the end, even that wouldn't do it and I stopped chemo earlier than anticipated. I was fortunate as I had very little pain from the injections.

Sending you warm thoughts and energy to help you through this trying time. I know you can do it!!

Keep us posted!

Karen

HellieC
Posts: 425
Joined: Nov 2010

I just finished 6 cycles of carbo/taxol on 19 Jan. It wasn't great but it was do-able. I had the infusions on a Wed, was OK Thurs then tended to drop like a stone with joint aches, tiredness, "fog" brain" on Fri which lasted until Mon/Tue the following week. Just took it easy, went to bed when it got too much and generally tried to chill out. Took codeine based painkillers when I needed them. Luckily I didn't have to work. By the following Wed I was usually OK and generally improved a little each day until the next cycle. I didn't have the Neulasta shots (I live in the UK and it doesn't seem to be the usual protocol here). But I was loaded up with steroids, antiemetics and antihistamines prior to each infusion and for 3 days afterwards.
Helen

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