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staging and mestastis question

Jules13
Posts: 17
Joined: Feb 2012

Hi, my Mom was just recently diagnosed with stage 4 cancer (since they found tumors in both legs, pelvic area and lungs). They told her they were 90% it's a sarcoma or 10% chance of lymphoma. And we thought the primary was in her right leg since it's the largest and giving her so much pain. Well, turns out it's a carcinoma originating in the uterus. Unforunately we only know that from a phone call from the doctor since they had to change her followup (from the biopsy) with a sarcoma onc to a gyn oncologist. So, my Dad didn't ask anything else so that is all I know until next Thurs. So, not sure exactly what type of uterine cancer it is.

My question is regarding the staging. Is it automatically considered stage 4 because it's in multiple locations? And can they tell if it's spread beyond the uterus, within the pelvic region (like to the cervix or bladder, etc) on the MRI and CT scan or is that something they can only tell during surgery?

They are not doing a lot of research and won't let me go to the dr with them so I'm trying to understand what questions they need to ask.

Thank you so much. This forum has been really helpful to me and I love seeing so many survivors of this crappy disease.

Jules

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

Jules,

Sorry to hear about your mom. Obviously we all wish and hope to be stages 1 & 2, as stages 3 & 4, indicate spreading outside uterus and possibly on organs. For example, I'm a stage 3C, with cancer found in 1 pelvic lymph node,and no where else.

You mention a "carcinoma" originating in the uterus. Do you mean carcinosarcoma? If so this is type I have which is called MMMT, a very aggressive type as to why I'm graded as "3".

I've ;isted a link to the American Society which shows staging for endometrial cancer. Might be of help to you and your family. One thing I'd definitely suggest, do some reading and better understand what you mom is up against, but note, with many aggressive cancers such as MMMT most of the research is very old, therefore, nothing promising. Today, we're finding more and more of us who are surviving these aggressive type cancers, so don't despair. As well, ask lots of question here, we're all happy to help.

http://www.cancer.org/Cancer/EndometrialCancer/DetailedGuide/endometrial-uterine-cancer-staging

Hugs,
Jan

Jules13
Posts: 17
Joined: Feb 2012

Hi Jan, thanks so much for your reply. My Dad told me that the dr said it is "a carcinoma originating in the uterus". So, I don't think it's the carcinosarcoma. The doctor had originally thought it was a sarcoma, I think because of the tumors in her legs as I think they believed the tumor in her right leg to be the primary. I think the fact that it's from the uterus is a total surprise. It is to us anyway. She was originally to meet with a Sarcoma oncologist after the biopsy, but they had to change her appointment to a gynecology oncologist.

That link was helpful, thank you. And for the encouraging and kind words. I have read several of your posts and they have all been really helpful. I hope and pray that my Mom will come out of her fear and depression and start to fight with knowledge like you and so many others on here seem to be doing.

I do find it odd about the tumors in her legs, originating from the uterus. Has anyone ever heard of this? I can't seem to find any information on that happening.

Julie

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

Surgery or biopsy will help determine if cancer has spread to other places.

I hope your family changes their mind on letting you go with them. Patients need advocates and help to understand the complexities of diagnosis and treatment. Someone to gather notes and ask questions.

I wish you, your mom and family all the best. Hang in there. Mary Ann

california_artist
Posts: 850
Joined: Jan 2009

Hello, so sorry to hear about your mom. It's very difficult when you don't get information about someone so important directly from the doctor as you must be so worried and looking for things to do to help. From what you have written, that they feel it is a uterine cancer, and that it is a carcinoma, my first thought is that it is what some of here have, called uterine papillary serous carcinoma, or UPSC for short. When you look at the treads here, you can get information at how those of us with that particular type of cancer of the uterus are doing.

Many of us have found getting the lab reports on any tests or scans to be very helpful. All that's generally needed is a medical release form which is turned in to medical records.

As to the question of staging. Any spread outside of the pelvic area is considered stage 1V, so the presence of a tumor would make it stage 1V. A CT or MRI will show a mass, but they will not show if the mass is indeed cancer. A PET/CT combo will "light up" areas larger than 1 cm if cancer is present, usually. The primary is the considered the origin of the cancer, in your mom's case, they seem to feel it is the uterus, so that is her primary. The masses elsewhere are metastases.

If you look to the side of each post here, you will see the name and little symbol, if you are logged in and click on the symbol, you will be taken to that person's about me page. It is a very good place to read about that person's journey. You could write something there about your mom if you like.

Your parents are most likely in shock right now. A cancer diagnosis is very hard to take in, which you need to do before you even begin to think of how to go about getting out of this mess. They'll come around. How old is your mom? Did she have symptoms or only the lumps on her leg. You will most likely find that we seldom in this group have gotten full body scans, it is generally "eyes to thighs" as that is where uterine cancers generally spread.

Hang in there, take a deep breath and hold out your hands, someone will there to help you.

Claudia

Best to you in these unfortunate times,

Claudia

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