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My Mother Has Stage 4 Uterine Cancer and I struggle with what to do next.

johnlovesmommy
Posts: 1
Joined: Sep 2009

Hi, I've been reading this forums for two weeks now and I've cried quite a bit reading these forums. I finally have found the strength to post so here is my current story (10/5/2009)

My name is John and my mother is 63. Two months ago she had an attack of sepsis that sent her to the hospital where we found out she has stage 4 uterine cancer that has also spread to her stomach (muscle area). The doctors she has seen say its inoperable and , eh, if we want - chemo for palliative purposes.

At this hospital, She had a dose of chemo for a few minutes but it caused her pain and they stopped it. She was there for 30 days and did not eat much and did not walk at all. It is a local hospital and they gave her zero physical therapy.

I moved her to a bigger hospital, one of the best in the city, but not a designated cancer center. They were nice there, but the insurance blocked them from giving her chemo and made claims about she could do it outpatient while she is in rehab. She was shuttled off to a very nice rehab center.

I was pleased with the rehab center staff, but much to my chagrin - I found out a few days later that there was zero setup for her to go do chemo anywhere. I felt like I had dropped the ball and kicked myself. I looked into what to do next and my mother was making progress toward walking when all of a sudden she couldn't do physical therapy. She was weaker than ever. I called the Doctor and now she is currently in the hospital with another blood and urine infection.

She has lost tons of weight and does not want to eat and is still bed ridden going on 60+ days. Everyday I am shocked into crying as I watch the food consumption wane to almost nothing. The tumor is starting to press on her other organs and cause pain and health issues (I.E. urine infection/sepsis )

I'm an only child and there is so much to do as a caregiver and maintaining both our worlds and of course I am overwhelmed and kicking myself that I messed up at certain junctures as precious time slips by.

My thoughts in my head is to try to get her chemo somewhere where doctors will take a look at her here in NY,NJ area and try everything I've read on these boards for books, holistic approaches to go along with it. It's confusing to know what to do and I wonder how so much time has past and she never got another shot at chemo or any other treatment.

Thank you for taking the time to read this. If anyone has any ideas on what I should buckle down and do I am open to listening to all.

ssfbeagle
Posts: 49
Joined: Jun 2009

My Mom was diagnosed with inoperable Stage 3 Uterine cancer in February of this year. Her only symptom had been vaginal bleeding for 3-4 days. Her gyn shook his head and told us nothing could be done. A follow-up CT scan confirmed the findings. The tumor was indeed large and extensive. We did not like his attitude to say the least. She was severely anemic at that point. We notified her internist who immediately hospitalized her. It was that point that the oncologist got involved and chemo was statrd within a week. The chemo process was up and down. She developed aplastic anemia, in other words, her bone marrow shut down. They tried radiation also but could not proceed because her platelets were too low. Now the oncologist is trying different doses of Taxol to keep the cancer at bay. WE know their is no cure but will try as much as we can to slow this thing down. My Mom is 78 and a trooper. She also has lost alot of weight and doesn't want to eat.
Talk to her primary MD and see what he may suggest. Have you tried the American Cancer Society in your area? Try to talk to oncology nurses. I'm a nurse myself but knew close to nothing about cancer.

bonniesue
Posts: 126
Joined: Apr 2009

So sorry you and your mother are going through all this. I am not sure where you live but if close to New York possibly Sloan Kettering Hospital(Dr. Barakat gyne oncology there). I do not have first hand knowledge but at least a starting point. I think another opinion would help. Prayers out for you both.

susie1143's picture
susie1143
Posts: 109
Joined: Aug 2009

So sorry to hear about your Mom. My mother is currently in remission from breast cancer so I have been on both sides of cancer. As a caretaker, please make sure you take care of yourself. After being a caretaker for my Mom and Aunt and then being diagnosed with cancer, I really think being a caretaker can be harder than being the patient.

I currently live in Florida but grew up in northern New Jersey. My aunt went to Sloan Kettering for lung cancer and my Mom went to Morristown for breast cancer. They both were very good but Sloan is dedicated to cancer specifically. At this time, I have a friend going to Sloan for ovarian cancer and is doing very good. Her doctor is Dr. Levine in New York City. The main telephone number is 646-497-7335. If that's not good try 212-639-7335. I was planning to go up there for a second opinion but decided to stay local in Florida. If you decide to go to Sloan, they have a few hospitals in New Jersey after your initial visit to NYC.

God bless you and your mother. My prayers are with you.
Susie

Jen457
Posts: 2
Joined: Sep 2009

Hi John, The first thing that you need to do is to quit beating yourself up over what you coulda, woulda, shoulda done. I learned the first time going through cancer treatment that you make the best decision at that point with the knowledge you have and no looking back. The only thing we all can do is to move forward. John, what does your Mother want to do? In my opinion, you need to talk to the doctor and social worker and find out what all the options are. You can ask for a second opinion at any point and most insurance companies will pay for a second and in some cases a third opinion. Some cancer centers will look at all the info and give an opinion based on what was submitted. I believe MD Anderson in Houston is one. Sending positive thoughts your way today.

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