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is this a recurrence?? PLease help! is this a recurrence?? PLease help!

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  #1  
Unread 05-18-2007, 03:24 PM
is this a recurrence?? PLease help!

Hi everyone! First of all i would like to tell you that i have not had a hysterectomy or cancer, Rather my grandmother at 83 was diagnosed with stage 1b endo. cancer. 1 year ago. She had a total abd. hyster. pelvic washings neg. and lymph nodes neg. It has been a year, and having my grandmother around and healthy has been a blessing. But this is where my concern comes in...

SHe had a Ct scan of pelvis/abd. last month as a 1 year follow up. Colon came back as thick, suspicious for spread of cancer. Had PET done, came back normal in colon, but had 2 hot spots one in chest and one in back of neck. Followed by bone scan and Ct of chest. Bone scan came back requesting x-rays, maybe metas. to T-11, they were not sure. They always call us when results are abnormal, so i am assuming that it came back fine. It;s been over a week. Ca-125 is normal, all tumor markers normal, except for slighlty elevated CEA of 2.8 ( normal is up to 2.5) Dr. not too concerned with that.

Anyways..ct of chest also finds same abnormality found in PEt..a 3.6cm enlarged anterior carinal lymph node..characteristic of malignancy.

Now she is scheduled for a lung biopsy on tuesday. I am going crazy waiting. It has been like this for 2 weeks and i just want to go nuts..

Nurse at dr's office says dont be so convinced it it metastic endometrial cancer..says it could be other things too...lymphoma, blah blah..i kinda zoomed out all i know is that im going crazy.

My sweet grandma is fine, says she feels great, no symptoms at all. She has more energy than me..im 30!!

i keep looking up metastatic endometrial cancer/recurrence and get the same old info...not curable..etc..etc...
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  #2  
Unread 05-18-2007, 05:59 PM
is this a recurrence?? PLease help!

Sorry I can't help, Melissa, just want to give you hugs until someone can come by with more specific advise. Take care of your gram, it's so nice of you to care and come here for info for her.
  #3  
Unread 05-18-2007, 08:04 PM
is this a recurrence?? PLease help!

Thank you for the hugs..it is much appreciated. All this plays a number on your nerves. I just want it to be here and done with. Everyone keeps telling me..PET can also show other things that mimic cancer, so it;s just wait and see to see what the next step is..thanks again for the hugs!!!!!!!!!!!!
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  #4  
Unread 05-18-2007, 09:31 PM
is this a recurrence?? PLease help!

  Quote:
"She had a Ct scan of pelvis/abd. last month as a 1 year follow up. Colon came back as thick, suspicious for spread of cancer. Had PET done, came back normal in colon, but had 2 hot spots one in chest and one in back of neck. Followed by bone scan and Ct of chest. Bone scan came back requesting x-rays, maybe metas. to T-11, they were not sure. They always call us when results are abnormal, so i am assuming that it came back fine. It;s been over a week. Ca-125 is normal, all tumor markers normal, except for slighlty elevated CEA of 2.8 ( normal is up to 2.5) Dr. not too concerned with that.

Anyways..ct of chest also finds same abnormality found in PEt..a 3.6cm enlarged anterior carinal lymph node..characteristic of malignancy.

Now she is scheduled for a lung biopsy on tuesday. I am going crazy waiting. It has been like this for 2 weeks and i just want to go nuts.. "
Melissa,
I'm sorry this is happening to your grandma and you. One thing to remember is that scans can give false readings.

What did I miss? Why a lung biopsy when the node appears to be enlarged? Did the CT of chest show something in a lung? I could see a node biopsy...

IF there is something showing up in the lung, it could be scar tissue from something like pneumonia so try not to worry until the doctors have a more definitive answer.

According to a gyn-onc at a major cancer hospital, CA-125 only picks up recurrence in endometrial cancers about 10% of the time. (And, even if it were elevated, it wouldn't necessarily mean there was a recurrance.) I not familiar with the CEA as being a uterine marker but maybe someone else will come along who's had it. I know it's a marker for other cancers so maybe it is for uterine, too.

One of the best things you can do to help your grandma is to take notes (write down) of what the doctors say and to write down your questions ahead of time so you will remember what you and she want to ask. Don't zoom out. It may be hard but you need to focus on what the doctor is saying.

The main thing I've learned dealing with this disease is not to worry about test results and things until you know for sure what you're dealing with. As Ellen, a lady on this board says, "Don't waste a good panic." That is hard to do, I know. Worrying won't change the outcome so try to focus on other things.

Is she being seen by a gyn-onc? If not, I'd suggest you get a second opinon from one.

A second opinion might be something you'll want to do if it turns out to be a recurrence to help determine the best course of treatment. This is where taking notes of what one doctor tell you will help you to compare and remember what they say.

Another thing to keep in mind is there are treatments such as chemo and hormonal therapies (for example, Megace, which is a pill) that may slow the spread if indeed there turns out to be one. (MD Anderson has a phase II clinical trial RAD0001 which is a pill.) I'm not a medical person so I'm not recommending anything just letting you know some of the options you might want to discuss with her doctor.

Most important thing is don't give up hope and don't worry until the doctors know more what is going on. Be strong for your grandma.

and prayers,
Kate
  #5  
Unread 05-19-2007, 07:04 AM
is this a recurrence?? PLease help!

Thanks for the reply..the lung biopsy is done, because the node that is enlarged is located at the end of the trachea. As far as i know, no lesions seen on the CT scan or PET in the lungs. Only thing picked up was the hot spot on the enlarged anterior carinal lymph node. I thinbk they are biopsing the node and a piece of the lung, b/c that is the lymph node that drains the lower left portion of the left lung. Iknow CEA isn't really a good marker, so im not too focused on that at all.

I know that there are things that she can do, like hormones and chemo. She aslo never had radiation, since she was stage 1b. and they claimed they got it all..i just hope thats true!!!
i HAVE BEEN DOING alot of research and have alot of info. in regards to treatment, etc and other studies that claim hormome therapy and sometimes resection of pulmonary metas. that can be done even on 80 yr. olds. I am very ready. Just like i was last time when i found out. She did have a gyn-onc. but to get a hold of him has been disastrous. We have tried and tried and given up. SO..once i find out what's going on, ill be looking for someone else.

I know it can be something else..that's what where my hope is. I have taken a look at MD Anderson, they have a facility here in Orlando, only 2 hours away. I also looked at moffit center in tampa, also 2 -3 hr. away. CTCA HAS A WAIT UNTIL MID JULY!!!! OMG!!!

Thanks for the support..please keep my gram in your prayers. And i hope you are doing well !!!!
  #6  
Unread 05-19-2007, 08:00 AM
is this a recurrence?? PLease help!

s Melissa,

I dont really have anything to add that hasnt' already been said. It could be anything, hopefully not cancer, but something mimicking it.

As said, the best thing you can do is be there for grandma, take notes, be a strong proponant and advocate for her health. Hug her a lot. God bless her,she sounds like an amazing woman.

xoxoxo
k9
  #7  
Unread 05-19-2007, 11:48 AM
is this a recurrence?? PLease help!

Hi Melissa! I'm just jumping on to echo what the others have said. Second opinions, note taking to make sure you get all the information you need for any decisions that have to be made should that be necessary, etc. are all great advice from some ladies who really know what they are talking about.

I also wanted to tell you what a wonderful granddaughter you are. Your grandma is SO LUCKY to have you in her corner. I'll be praying for good results for both of you.

TAKE CARE!

Vicky
  #8  
Unread 05-19-2007, 03:09 PM
is this a recurrence?? PLease help!

THANK YOU ALL FOR ALL YOUR KIND WORDS. I am so lucky to have a grandmother like her. My grandparents are gonna celebrate their 64th wedding anniversary this july..so i am blessed to have both of them. i find myself praying all the time, even at the oddest moments, but i have faith that all will turn out well. Sometimes i feel good and really positive, at other times i feel down. Mostly because i keep looking stuff up and i get some much info, about how stage 4 isn't curable. I know i shouldnt worry it's just hard not too.

I look at my grandmother and see how wonderful she looks and feels. I have honestly never seen her look so good in my life. Today me, mom and grandma went to have our hair done. grandma got a perm and cut and new makeup. she looks awesome, she says she doesnt even recognize herself..LOL. She has bought tons of new clothes and shoes the last couple of weeks, she is feeling awesome. Better than ME AND MOM Combined!!!

i just get frustrated, when i see how sometimes hormone therapy doesnt work...of course i know everyone is different and has different results..but i am very hopeful. I JUST CANT STAND WAITING!!!!!!!!!!!

i keep looking up different causes of an enlarged lymph node in the chest area, specifically hlum/lung area...i get lymphoma, infection, castlemann's disease, scaridosis, lymphoma. But she has NO symptoms whatsoever. I know things can come up with no symptoms, which i guess is good, meaning..maybe it's caught early!! Is that right to think? It's been 1 year and 2 weeks since she was supposedly cured, hmmm....i pray that this is still the case.

I am in so much admiration of all of you. You are all so strong and have given me many encouraging words. All of you are in my prayers!!!!!!

THANK YOU SO MUCH
  #9  
Unread 05-19-2007, 05:51 PM
stage is the same....

Hi, Melissa,
My gyn-onc said the stage stays the same if you recur so your grandma wouldn't be stage IV.
There is a new kind of radiation... think it is called spiral radiation... that is suppose to be especially good on pinpointing and treating cancer in places like the lungs. There is also something called an abulation (spelling?) that helped a man on the recent Discovery Channel show, "Living with Cancer."

I echo what others have said that you and your grandparents (64 years) are awesome people. I admire your grandmother's attitude, too with looking great.

Don't look at statistics because some of those people had other health issues besides endo cancer. Stick to key medical websites and the most recent information.

The chemos used in GOG 0209 clinical trial seem to be what most centers are recommending for recurrence:
http://www.cancer.gov/clinicaltrials/GOG-0209
Some places do the three chemo (arm I) off protocol and only give 6 rounds instead of the seven rounds called for in the protocol. It is my understanding that arm two is the current standard duel chemo for recurrence.

I either recurred or had undetected cancer in the para-aortic nodes that were outside of the field of radiation last year. I felt good when it was detected. The chemo has been easier than I thought it would be (almost done) and it has shrunk the growths in the nodes. So, don't give up hope if it turns out your grandma has recurred or has undetected spread. Hope is one of the keys and prayer, in my opinion, is the most important key.

Most of all, I admire your faith.

It is normal to feel down at times but I find that when I stop to count my blessings I get lifted up again. Take each day as it comes and enjoy spending time with your grandparents.

and prayers,
Kate
  #10  
Unread 05-19-2007, 06:39 PM
is this a recurrence?? PLease help!

Sweetie, you sure pulled my heart strings. I have 2 granddaughters and thrive on attention from them. My eldest is 21 and called me every other day. You must know what it means to your grandmother to have a granddaughter like you. Just wonderful.

I am really a little shocked to think this could be a lung recurrence in just one year. Your grandmother had a low chance of recurrence and this really seems fast to me. When I had a recurrence it was dx by a CA125. It is not always accurate but it sure gave me several more years.

The lung is a strange organ when it comes to scans. Sometimes it shows things that are no problem at all. Hope this is the case with Grandma. Sounds like she is in good hands. Having a recurrence does not have to be a death sentence. I had a recurrence almost 6 years ago. With all the treatments out there they could treat your Grandma as a chronic case.

I have a very dear friend who had her second recurrence almost 4 years ago. The mets had went to her hip and pelvic bone along with a large tumor. She had radiation on her hip and pelvic bones and it took care of the mets completely.

Hang in there.

God Bless,
Juanita
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