Stage IIIA Gr. 3 endometrial cancer questions

I had a radical hysterectomy 6 weeks ago for what was determined to be Stage IIIA grade 2 endometrial cancer. It had moved to my ovaries which had 15cm & 30cm adnexal masses. One of these masses ruptured during surgery & a clear yellow fluid from the mass leaked into my body (per op report & surgeon).  My questions:

Exactly how bad is it that one of the masses ruptured during surgery? My abdomen/pelvis is enlarged now, Dr. says ascites and thinks it will clear after 1st chemo trt.

My Dr. was unable to give me statistics on survival rates - I tried internet search, got confused, I think something said 30% for 5 yrs.  Is this accurate?  Can you provide any info?  

A visiting nurse said that generally no matter where I go, all treatments for this cancer would be the same, so it wouldn't matter that much where I go.  My Dr. said it would be chemo. & radiation.  Is this true?  Should I try to seek out another, better hospital or do you think it would all be the same no matter where I go?  

I have lost a lot of weight since surgery and may be anorexic. I'm barely 100 lbs at 5'6".  Today especially I'm very nauseous but still try to eat.  Do you have any suggestions on gaining wt. and how to deal with it, how it will affect trt?  Dr. says just to keep doing what I'm doing. Please help.  I'm frightened, live alone, and not sure where to turn.  My trt. consultation mtg is on Monday w/another Dr. because surgery was done in another state.  

[Annekathryn Goodman, M.D.]

Hello, it sounds like you have been having a really rough time. I see three main things that we should talk about here:
1.What is your diagnosis and what does that mean?
2.How are you doing physically right now?
3.Who should take care of you?

1.You have been told that you have a Stage IIIa grade 2 endometrial cancer. What that means is that the cancer started in the lining of the uterus (the endometrium) and has traveled to involve the outside surface of the uterus (the serosa) and/or the ovaries/fallopian tubes and/or fluid in your abdomen has cancer cells in it (malignant ascites). It is also possible that you have two different cancers: a cancer inside your uterus (Stage I) and a second cancer that started in your ovaries (Stage I-II). Sometimes it is hard to sort out the difference because under the microscope, the cancers from the uterus and the ovary can look very similar.

Prognosis and survival statistics are traditionally reported as the number of people with the particular cancer and stage whose cancers come back and cause the death of the person in 5 years out of 100 people with that cancer and stage. These statistics are very different for a stage III endometrial cancer compared to a double primary ovarian/ endometrial. Stage III endometrial cancers are quite rare and only 13% of all women with endometrial cancer are diagnosed at stage III. One study looked at women who only had spread to the ovaries and tubes and found an 80% five-year survival (Gynecol Oncol volume 9 pages 12-17; 1980.)  Other studies have reported lower 5-year survivals of 40%. For women with double primary cancers, the prognosis will depend on the stages of the cancers and is usually better than for a Stage III endometrial.

Treatment after surgery does involve a combination of chemotherapy and radiation. How exactly that is done should be tailored to the individual person.

2. I am worried about your weight loss and anorexia. It is very important for the medical staff who are caring for you to address this. Everyone looses weight after big surgery (about 20 pounds) and it does take a while to get back on track with eating (about a month). However, it is important for you to have a full nutritional assessment. If your protein levels are low, you need a consultation with a nutritionist and you need to start on supplements. It is also important for your doctor to make sure you do not have a problem from your surgery such as an intestinal blockage or an infection.

3.) It is true that chemotherapy is chemotherapy and can be given anywhere. Radiation therapy is usually given at certain radiation centers. Many radiation centers are part of big cancer centers. When a person has a rarer cancer such as a stage III endometrial cancer, it may be worth looking for an oncologist at the large cancer center in your region. These places have more resources and may have more experience taking care of people with your cancer. Having said that, nothing replaces a good patient

[Apricot100]

Thank you for your response, but now I'm confused.  What is double primary ovarian/endometrial cancer vs stage III endometrial?  Which do I have?  I think the report said something about the ovarian cancer may have developed separately.  (also it was grade 2, I noticed on the subject area I accidentally wrote 3).  

Also, the rupture of one of the masses inside of me while operating and ascites - how bad of a situation is that?  

By big cancer center, I'm not sure what that is.  Would a University Hospital qualify?  

Unfortunately I have no friends here who could go w/me.  

Thank you.

[akg]

Hi There,
A "double primary" means that two different cancers are present at the same time. "Primary" refers to where a cancer started. Sometimes a person will have multiple primaries such as a cancer starting in the ovary, second one starting in the fallopian tube, a third one starting in the uterus - all at the same time. Another term you may hear is "synchronous primaries". That is different that say having a breast cancer and then ten years later, experiencing an ovarian cancer. In that situation, one would say that the person had a second primary cancer (as opposed to a recurrence of their breast cancer.) Terminology can be so confusing!

There has been debate back and forth about whether a ruptured cyst that has cancer cells increases the risk that the cancer could come back. My personal opinion is that it probably does not but we try not to rupture tumors when we can. Sometimes it is unavoidable because the cyst is stuck and opens when it is moved.

Major cancer centers are mostly located at big University teaching hospitals. That is where groups of multidisciplinary teams are present and usually research clinical trials are available.

That must be so hard not to have anyone to go with you! Good luck.

[Apricot100]

Thank you for your responses.  I'm still not sure about all of this.  So if my cancer started in endometrium & moved to ovaries, is that better or worse for survival than individually?  

Had my appt. today at the univ. hospital.  Dr. wanted to know why it has been so long (6 weeks) since surgery (surgery was in another state, surgeon/gyn/onc had to transfer me to another gyn/onc in my home state).  New Dr. sounded not too happy it took so long, but original dr. said chemo. should start in 4-6 weeks after surgery & later he said 6-8 weeks.  What info. do you have on this?  Has it been too long?  

Also, after surgery, I started "leaking" a clear yellow fluid vaginally - ascites?  Dr. thinks it will go away after chemo.  It stopped for 2 weeks, then started up again on Sat.  Do you know anything about this?  Why would it stop & start?  Are things getting worse?  

Do you think I should try to go to the #1 ranked cancer center?  The new Dr. said there is no real standard for treating endometrial cancer - she said it could be different anywhere.  How do I find the best for me?  I just wasn't real happy today because the Dr. was rushed and did not have the time to spend with me that I wanted.  When I told her I had questions, she limited me to only the "important" ones and to me, they are all important.  I don't know what to do. Please help.

[akg]

Hi Apricot,
Your comments are right on! All questions are important. Although I have to sympathize. There are days that I am rushed in my office hours as well.

-It is ok that it has been 6 weeks without chemo but I urge you to get in soon to be treated.
-I probably do have a bias that going some place where the oncologists have alot of experience with rare things is better for you (like a big cancer center at a University Hospital).
-I do not think it is good or bad depending on whether this is a double primary or a stage III endometrial cancer. Both situations need careful attention with surgery, chemotherapy , and sometimes radiation.
-I am not sure why you are leaking clear fluid. You need a CT scan of your abdomen and pelvis and you need a pelvic exam. It could be just normal postop healing, it could be an infection, it could be ascites, soemtimes it turns out to be urine.
good luck akg

[Apricot100]

Thank you again for your response.  As for my leaking ascites, they did some sort of dye test and found it was not urine.  The MRI showed "ascites draining in vicinity of a surgical clip"  Dr. #1 said should go away after chemo., Dr. #2 (the one w/no time) did not tell me anything.  I had renal failure from previous CT scan, so have not had one for this (I'm guessing that's the reason).

The Dr. with no time was at a large university hospital.  She said I'd get a combo of Taxol, Adriamycin, and Cisplatin for 2 days then off 19 days - 3 cycles, then radiation, then maybe more chemo.  After reading side effects, and with my low weight and sensitivity I'm afraid the treatment will kill me before the cancer.  Does that ever happen?  What do you think of the trt schedule?  Is it normal?  Is a semi-permanent port in chest or arm standard? Thank you so much in advance for your time and responses - you have been such a huge help.

[Apricot100]

I'm hoping you read this message since I'm going crazy.  For Stage IIIA grade 2 endometrial cancer that included my ovaries, the Dr. recommended Adriamycin, Cisplatin, Taxol.  She said that's the standard regimen, but there's no consensus on it.  

Surgeon says Cisplatin & Taxol only are fine and what was recommended originally.  New Dr. agreed to give me just those 2 -and now I worry I should stay w/the 3.  What do you know about this?  Also I got confused because new Dr. originally said Cisplatin w/the 3 drug trt, but Carboplatin w/the 2 drug trt.  Please, please help me figure this out.  Thank you.

[akg]

Hi Apricot,
It sounds like you feel very alone with this. Once you make a decision about where you get your care, you should hook up with whatever support system is present at that place. For instance, alot of places have a social worker who can help point you to resources in your community. If you are in the USA, the Amercian Cancer Society usually has a list of support groups in your community. It is VERY important to be connected in that way.

As far as chemo options - yes, for endometrial cancer, we have been leaning towards the three drug regimen of carboplatin, adriamycin, and taxol (TAC). However, there is presently not good data to say that TAC is better than platinum/taxol. So a doctor will make a decision based on the individual patient and how they are doing. There are two main flaovrs of platinum - cisplatin and carboplatin. Again , decisions of one over the other are based on the individual patient.
You take care.

[adams01]

Hi! Luckily I have found this website and hope that some of you have some advice.  Back in 2001 had an ovarian cyst that ruptured. Did not know that I even had a cyst.  2004 had my uterus removed because it was enlarged.  Last couple of months have been feeling bloated,frequent urination, severe pain in my pelvis, pain during intercourse,fullness after eating to the point of where I feel like throwing up, excessive gas (rear), diarrhea and constipation.   Told my gyn all of my symptoms.  When he did the vaginal exam I almost came off the table from the pain. Sent to get an ultrasound of my ovaries. First the instrument was used on top then, they did the vaginal ultrasound and I almost flew off the table again.  Called for results a couple of days later Dr told me I had a cyst on my left ovary but it was nothing to worry about.  Just last week had severe, severe abdominal pain to where I started pouring sweat, got white as a ghost, and the pain seemed to ease but did not go away fully until about 3 hours later.Went to family physician. He wanted to put me in the hospital and run some tests and I said no maybe the pain would go away.  Well, of course it didn't and I ended up seeing him on Monday.  Did a CT-SCAN. I went and got the results of my tests today.

[concern4rk]

My Mother-In-Law has had ongoing treatment for stage 4 Primary Peritoneal Cancer. She has undergone 4 chemo treatments (21 Days)apart. She is recovering from hysterectomy. Final diagnosis has come in as Stage 4 Grade 3 Endometrial cancer as primary with ovaries as secondary. As of now they are planning another chemo treatment for this coming week. However if any complications arise (fevers, nausia, problems swallowing eating drinking) the Dr. will probably recomend stopping treatments. She also has evidence of the cancer in the lung, bowels & intestines and "ON" all other organs in abdomen as well as in the peritoneal. The Dr. may want cat scan of brain. He basically told the family that she has up to 6 months left to live. My questions are these: 1. Why go thru the chemo if it will not extend her time.
2. Does 6 months sound about right? Sooner or later?
I look forward to hearing your thoughts on this.
Thank you

[akg]

Hi Guys,
I just happened to scan down and see these two comments. I think there is another way for you to ask me questions. I can miss ones that are added to a pre-existing Q&A.

for the first: pain that turns you white does not sound right. If the scan showed an ovarian cyst, it is possible that you are having torsion which means that the cyst is twisting around its blood supply. When the blood supply is blocked off, tehre is sever pain. I would recommend a surgical removal; of the cyst.

For your mother-in-law with stage 4 endometrial cancer. yes it is quite possible that this cancer will return and cause devastating illness within six months. Your philosophical question about whether it is worth treating at all with such a scary prognosis is a very important question. It is important to constantly ask oneself, is this the right thing to do. One answers this question by seeing how hard the chemo was and was there a response to chemo. If the answer is -not bad and yes, then giving more therapy makes sense. If the answer is bad side effects to chemo and the cancer is growing, then it is important to change plans. Please see my posting on 824/2006 for the 8/23/2006 question "Carboplatin and taxol or just carbo 4 recurrence" for more info on how I evaluate whether someone should get therapy.

good luck to you all