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  #1  
Unread 01-24-2004, 10:53 AM
my mom

I need some help. My mom was diagnosed with endometrial cancer in 4/03. She has the aggressive type..mixed papillary serous, clear cell pathology. Her surgeon did not sample lymph nodes because he thought that she had a fibroid, which was benign, but when final pathology report came back, we found out she had cancer in the lining of the uterus, the doctor felt that it originated in an adenomyosis.
She went for a total body CT scan and they found 5 lung nodules and an enlarged peri-aortic lymph node. So her oncologist thinks she is at a stage 4. In September, she had another CT scan, the lung nodules were unchanged and the lymph node decreased in size, so the doc felt the chemo was working. In the mean time, we went to get a second opinion from a gyn-onc at the University. (our HMO does not have a gyn-onc) She felt that if the lung nodules are unchanged, that it is most likely non-cancerous? Her CA-125 was 7. My mom grew up in Europe on a farm, and it could be from anything.


Her oncologist does not think this, he is convinced they are metastasis. She finished 8 cycles of taxol, cisplatin, and doxorubicin in 11/03. She had another CT in December which showed an increase in the lymph node (2.3cm to 3cm largest diameter) and again no change in the lungs. He is telling us that there is nothing we can do. That the chemo is no longer working and to wait 3 months for another CT-scan to see what happens. I've suggested surgery to get that lymph node out, radiation, other chemo drugs.

This doctor has given up on my mom. I am really upset because there are so many new technologies that you can't give up as long as the patient is still breathing. My father died of colon cancer when I was 16, I am getting married in May, and we just found out last week that my fiance's mom has uterine cancer and is going in for a hysterectomy next week. Has anybody gone through this? Do doctors give up so easily? The doctor never biopsied the lymph nodes, can they assume there is cancer in there if they were never biopsied just because they are enlarged? We have made an appointment to go back to the gyn-onc to get her input but not until 2/18. I don't know if we could wait that long. I am only 28 and I can't imagine losing my mom because her doctor wants to give up.

My mom thinks that she is dying, and she is so depressed. Does anybody has any suggestions or has anything like this happened to them? Thanks for reading.

Concerned daughter
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  #2  
Unread 01-24-2004, 11:20 AM
Dear Andie333

My heart goes out to you with love and hugs. The only advice I can give you is to tell your mom you love her at leat as many times a day as you can. And no matter how frustrated you feel with her or her doctors give her lots and lots of hugs and kisses. Hold her and if she is on the bed spoon with her! and hold her.

My mom passed away from esophogeal cancer last year, I miss her horribly. I wish I could kiss her and hug her right now and tell her I love her just one more time!

You will both benefit from many hugs and kisses and I love you's
  #3  
Unread 01-24-2004, 01:05 PM
my mom

Hi Andie,

I am so sorry for you and your Mom's situation. Since two Doctor's had such diverse opinions is there any way you could get a third opinion? I would want at least 2 Doc's to agree. Also, if the current Onc. is right, have you looked into any clinical trials? Your Mom might qualify for one if there are no other treatments to help her.

Also, I know it is hard, but try to get your Mom to think about living rather than dying. I am not one that thinks attitude is everything and as long as you are upbeat you will get better. However, I do think a positive outlook is good for the soul and therefore good for the body. There are many Stage 4 survivors out there. Have you been to the Cancer Survivor's Network. It is a group of survivors through the American Cancer Society. They may be able to help you get a lead on either a clinical trial or alternative therapies.

Good luck Andie. Your Mom is lucky to have a daughter like you.


Sharon
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  #4  
Unread 01-25-2004, 11:16 AM
my mom

Andie,

My heart goes out to you - my own mom died of ovca just a few weeks after my own diagnosis.

If there is doubt about the nodes - will the doctor order a PET scan? The nodes will "light up" on the PET if they are cancerous. It will not tell you whether the nodes are metestatic or whether there is another primary cancer (is your mom a smoker or anything?), although the peri-aortic area is one where gyn cancers do tend to spread.

I can't believe your plan will not approve a gyn onc visit. I'd contact my state agency that regulates insurance. Even if there isn't one on the panel, they should provide covered access

Dorrie
  #5  
Unread 01-25-2004, 03:28 PM
my mom

Hi Andie,,,

Sending lots and lots of hugs your way. How awful for a doctor to just give up on a patient. I would go and get a third opinion since the other two do differ.

Tell mom she needs to be a fighter. I have a son the same age as you so I am assuming that your mom is about my age, 53.

Almost two years ago, when I was diagnosed with ovarian cancer, my son and then future daughter in law had just gotten engaged and wedding plans were set. They wanted to stop everything and wait until I was better. Well, there was no way that I was going to allow that to happen.....Working, planning the bridal shower, rehearsal dinner, and wedding preparations kept me going strong.

Please keep us up to date on the third opinion.

Rosalie
  #6  
Unread 01-25-2004, 08:39 PM
my mom

Andie,

Hi, I am so sorry for what your mother is going through. As Dorrie suggested, your mother needs to have a PET scan to be sure that the lung nodules are in fact cancer. It is not uncommon to have nodules in the lungs that are totally benign. Also, you definitely need to get her to another doctor. How dare her physician just give up on her! Some of the major cancer centers to look in to are as follows:


1) M.D. Anderson Cancer Center http://www.mdanderson.org in Houston, Texas

2) Sloan-Kettering Memorial Cancer Center http://www.mskcc.org in New York, NY

3) Dana Farber Cancer Institute http://www.dfci.harvard.edu in Boston, Mass.

The web sites have information on patient referrals and help with scheduling
appointments and arranging lodging, etc..


Also, to locate clinical trials for her type of cancer you can contact the National Cancer Institute at http://www.nci.nih.gov. In addition, I bought a book at Amazon.com called "The Official Patient’s Sourcebook on Endometrial Cancer that has a lot of good information on currently available treatments. There is also an interesting article on endometrial cancers (all types) at http://www.emedicine.com/MED/topic2832.htm


I know how discouraged your mother must be, but as long as she is still breathing there is a chance for a cure! A prime example of this is Lance Armstrong. He was diagnosed with testicular cancer in 1996. By the time he was diagnosed, the cancer had spread from his testicle to his liver, lungs and brain. Not only did he not die, he went on to win the Tour de France, perhaps the most grueling sporting event in the world, five years in a row! I highly recommend his book, It’s Not About The Bike, as his recovery is truly inspirational. Another wonderful book is called Chicken Soup for the Surviving Soul- it contains 101 stories from people who have survived all types of cancer, many of them Stage IV. Both of these books are available at http://www.amazon.com.

Finally, it is very common for people with cancer to become depressed. Please try to get your mother to seek help- either in the form of antidepressants or speaking with a therapist. There are also a number of cancer support groups that could help your mother to better cope with her illness. One of these is The Wellness Community which also offer on line support and meeting information at http://www.thewellnesscommunity.org/.

I wish you and your mother the best of luck,

Jan
  #7  
Unread 01-26-2004, 04:00 AM
my mom

Andie,

I have recently had a TAH/BSO for stage I endometrial cancer, and will be seeing a gyn/onc tomorrow for followup. He is familiar with my case, since he was in consult with my gyn MD since I was diagnosed. Just wanted to share a little about me before I tell you about my Mom who has been my survival inspiration, since this coming May marks her20thanniversary as a uterine cancer survivor. Of course the technology back then was not as it is today, but she was quite ill prior to surgery, lab tests were all abnormal which made the doctors believe she had significant metastasis. About two weeks into her pre op radiation therapy which I might add she weighed about 90 pounds by this time, and was 150 at diagnosis, she spiked temperatures up to 104.
Every type of specialist known consulted on her, and all decided she needed with the elevated temp emergency surgery because they all felt the tumor likely had invaded the bowel causing possibly a peritonitis. Honestly, my family did not even think my Mom would survive the surgery since she was so ill going into it, but we sat in the waiting room and just prayed and prayed. When the doctor came out to speak to us following surgery, we expected to hear the worst. By the grace of God, the doctor told us that they had found an abscess behind the uterine wall which was causing all the problems, could not believe this went undetected with all the x-rays, etc. that were done, and removing this and doing a TAH/BSO, she now had a good longterm survival prognosis. Andie, I know the senarios of your Mom and my Mom are different, but I just wanted to share this with you to let you know where there is life, there is hope, and followup with the great resources provided in the preceeding posts. In closing I might add, I am a 26 year veteran R.N., and I can tell you this, as many tragedies that I have seen since working in the nursing profession, I have seen just as many miracles, so if your heart tells you to go the extra mile for your Mom do so. You are both and my prayers!!
  #8  
Unread 01-26-2004, 09:54 PM
my mom

Thank you, I think all of you are inspirations. I have been visiting this site since mom was diagnosed. We have made 2 appointments with 2 different oncologists for their opinions.
My sister works for a doctor who went to school with a lady who is now a gyn-onc at Sloan Kettering, we have contacted her for her advice and are waiting for a reply. Actually, when my sister first spoke to her back when they found the nodules, she said lots of her patients have non-specific nodules in the lung.
Just found out today that my mom's CA-125 drawn last Thurs was 6.5. Started at 7.7 before surgery. Does this have any significance since both are normal? Also, does radiatin work if the cancer has already metastasized to the lymph nodes?
We have suggested doing a PET scan, but her oncologist is convinced of the metastasis' and is not willing to do it.

Thank you for all your advice, I will let you know how this goes. I am not going to give up!
Andie
  #9  
Unread 01-29-2004, 07:57 AM
my mom

Andie, I read your post when you first posted it on the 24th. I haven't answered, but your Mom has been on my mind ever since then.
Does she get on the computer at all?
As a mom/gramma myself, maybe I could give some support. My heart absolutely goes out to her.


Please keep us updated! And tell her to fight! Just because we are 'older', doesn't mean we are done

nancy j.
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