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Just diagnosed with recurrent endometrial adenocarcinoma

Mercy0008
Posts: 4
Joined: Mar 2011

Maybe I should wait to write, but I feel a need to connect.
Two years ago I had a complete hysterectomy due to endometrial cancer. Was told it was found in early stage, no invasion of cervix, clean lymph nodes.
Now, doctoring because of leg pain from a fall last spring, a spinal MRI shows enlarged lymph nodes in my abdomen near my 4th/5th lumbar vertebra.
Have had a lot of bloodwork, MRI, CTscan and bone scan. Oncologist said bloodwork looked good, as did bone scan.
He's started me on Aromasin rather than chemo as the cancer is estrogen receptive.
I have a strong cancer history: colon cancer over 20 years ago, skin cancers, and now this.
Is anyone else being treated with Aromasin?
I should mention that I have an appointment with a Gynecologic Oncologist at a teaching hospital this week.

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

I am so sorry that you had the need to become part of this group but I am so glad that you found us. I am so happy to hear that you are planning on seeing an GYN Onc...There are so many questions. What type of uterine cancer did you have? What was the Grade and Stage?
It seems like your Dr. jumped to conclusions to just start you on medication without really knowing what the cause of the enlarged lymph nodes is. I don't know anything about aromasin so am no help in that dept.

Since you are going to a teaching hospital, I am certain that there will be many resources there to help you get to the bottom of things.

I hope you are taking someone else with you who will write down everything the Dr. has to say. Get your list of questions ready too!

Please keep us posted....am anxious to hear what the GYN Onc has to say!

Best wishes, Karen

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

I am so sorry that you had the need to become part of this group but I am so glad that you found us. I am so happy to hear that you are planning on seeing an GYN Onc...There are so many questions. What type of uterine cancer did you have? What was the Grade and Stage?
It seems like your Dr. jumped to conclusions to just start you on medication without really knowing what the cause of the enlarged lymph nodes is. I don't know anything about aromasin so am no help in that dept.

Since you are going to a teaching hospital, I am certain that there will be many resources there to help you get to the bottom of things.

I hope you are taking someone else with you who will write down everything the Dr. has to say. Get your list of questions ready too!

Please keep us posted....am anxious to hear what the GYN Onc has to say!

Best wishes, Karen

susafina
Posts: 134
Joined: May 2010

Hi Mercy,
You have joined a great group. Here you will find great information and support. I am being treated for stage 3 endometrial cancer. I had surgery, full radiation and chemo. When I was finished treatment, my oncology surgeon, radiologist and gyn oncologist wanted me to start on an aromatase inhibitor like you. I have been on it since November. My tumor was estrogen positive. It was explained that estrogen is produced in the adrenal glands and hides in fat cells. A study is being done to see if it will work to prevent a reoccurence. It is suggested you should be on it for one year. Time will tell. The one big side affect is joint pain, but so far so good. Keep posting!
SUE

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

Some women have had great results with aromasin. I suspect they will check you regularly with PET scans to see if it is working. I go to a Gyn Onc and she gives me chemo. I am impressed that they got Er and PR status on your cancer two years ago. Also, did they biopsy any of your lymph nodes this time? I don't think peritoneal chemo is an option for you but down the road it might be. Ask your Gyn Onc if she thinks so.

I am sorry you recurred. I felt so defeated when I recurred. I am in remission now (NED) and enjoying every minute. There are many drugs out there to help us. Did you have endometroid cancer? That is easier to rope in. Doxil worked well for me with adenocarcinoma USPC. I also took it with avastin. I read an article that with drugs they think our life span can be greatly extended. Write down your questions and take to your Gyn Oncologist; they are the most important part of your team. They study the Gyn literature and are experts.

I think the research has slowly increased; I think blogging here helps professionals to know we need more research. We are a pack of real guardian angels.

Diane

We are here for tears and smiles. Some days it may be too much to look here; and then some days it really gives you inner strength. If you need to stay away don't feel guilty; we are always here. We're a pack of real life angels!

Mercy0008
Posts: 4
Joined: Mar 2011

I don't understand what you mean when you refer to getting Er and PR status on my cancer two years ago.

I had a biopsy done, CT-scan guided core biopsy, about 3 weeks ago. The radiologist's report from spinal MRI read: "There is marked left paraortic lymphadenopathy with the largest lymph node at the level of L4 measuring 2.8 cm (AP)x 2.6 cm (TV). Retrocaval lymphadenopathy is also noted, with the largest node measuring 2.3 cm in long axis and 1.2 cm in short axis." The 2.8x2.6 cm lymph node is the one that was biopsied.

CT-scan did not reveal tumors in any of my organs. Bone scan (done because of right leg pain, ongoing) was normal except for a small "soft spot" in a rib high on my left side. Two oncologists in the practice think that's going to prove to be nothing, but my primary oncologist says he'll have an x-ray study done of it.

I can figure out NED (no evidence of disease). What is USPC?

I don't know whether I had endometreoid cancer. My oncologist says it's fairly slow-growing since it's taken 2 years to show up in my lymph nodes. Though I now think that this has been the cause of my pain during at least part of the past year. I visited the orthopedic practice yesterday and was told there was nothing in the spinal MRI that would cause the leg pain I've had. It's probably coming from pressure on nerves from the enlarged lymph nodes. My back, I was told, is actually equivalent to that of a woman in her 50's and I'm 64.

Would you mind sharing with me how long you were on chemo, what drugs you were given, how long ago you were treated and what side effects you experienced.

Thanks so much.

Marilyn

Mercy0008
Posts: 4
Joined: Mar 2011

I'm new to this. I presume you've seen my previous message to another person.

I've been told that my cancer is stageIV, but has not shown up in any organs, just lymph nodes.

Tell me what your chemo was like. What drugs did they give you and what side effects did you experience?

After taking Aromasin for a week, I'm only aware of feeling strung out with anxiety that I didn't have before. Of course I was upset with my diagnosis, but was taking .5 mg Lorazepam/day and it kept me on a pretty even keel. My oncologist said last week he thought I'd be better off taking less Lorazepam because it could act as a depressant. But I think it really helped me.

Going to see a specialist at a teaching hospital Thursday. Hope I ask the right questions.

By the way, over the years I've had colon cancer (41 yrs. old)...surgery, no further treatment, recurrent squamous cell skin cancer on my fact that required resection of my right facial cheek & radiation, then endometrial cancer 2 years ago. This is the first time I've ever been told the stage of my cancer.

Mercy0008
Posts: 4
Joined: Mar 2011

I'm afraid I'm going to sound rather ignorant. I went to my GYN immediately (2 yrs. ago) upon seeing a couple of little spots of brown blood. He did a biopsy and had an MRI done. He told me not to be frightened, that this was found "early, early" and was not going to be something to worry about.
I had a complete abdominal hysterectomy. My GYN was assisted by an oncologist from a major Phila area cancer center. Doc said my uterus was small as were my ovaries. The cancer had not penetrated the cervix, and lymph nodes were clean. The oncologist's call was that no further treatment was necessary. I had a couple of pelvic exams the first year and was told after that to come back in a year. That would have been about now.

Last year I took a fall hiking and have struggled with hip and leg pain since. I tried PT, chiropractic, then went back to the orthopedic practice and an spinal MRI was done.
That's when the enlarged paraortic lymph nodes were discovered.

The largest one was biopsied. I was told it was adenocarcioma, of endometrial origin and estrogen receptive. The oncologist wanted to put me on Aromasin as a first measure because he said the side-effects of the appropriate chemo drugs were so nasty.
So here I am, one week into that treatment. My only side effect is anxiety that sometimes breaks through despite taking Lorazapam.

My appointment at the teaching hospital is Thursday. I'll report back after that.

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