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Mom with Stage IV Endometrial Cancer... lost.. help

brandondbagley
Posts: 2
Joined: Aug 2013

My name is Brandon. We were just told by my Mom's doctor yesterday that after stanford had examined her lab work, she has stage IV Endometrial cancer.  A very large tumor that is in her abdomen. She had to have stints in her kidneys and a colostomy bad set up. She is at home now. The doctor was very negative and said she would'nt reccommend treatment. That she would get worse before she gets better. She sais she could have 1-2 months left. I'm so lost right now. My mom did'nt have insurrance so we've applied her for medical and ssi disability. Everything is moving so slow while my mom is here at home being taken care of by my sister and I. Anyone have any information on treatments where to go, who to talk to, experience with it themselves? I just feel like i'm in the dark, ive talked with so many people and am getting nowhere. My mom has always been strong i just dont feel like giving up on her... not sure if i even trut these modesto, ca doctors. 

brandondbagley
Posts: 2
Joined: Aug 2013

maybe there is a clinical trial or public hospital that can treat her?

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

Hello,

I am sorry about your mother. I hope you do not mind me asking some questions. How old is your mom? Where do you guys live? What kind of endometrial cancer does she have?

Thank you

lillefty's picture
lillefty
Posts: 22
Joined: May 2013

Hi Brandon - I am so sorry to hear about your mom's diagnosis but am glad you found this board. The women here are amazing and have a lot of expertise to offer. 

I joined this board because my mom (who just turned 70) was diagnosed with stage 4 (ended up being stage 4b) uterine cancer with clear cell features (a very aggressive subtype) in April of this year. It had spread to her omentum,peritoneum and had just started growing on her colon. She had surgery (a radical hysterectomy) and has had four rounds of chemotherapy. She is doing really well right now. I remember how overwhelming it was to me when she told me about her diagnosis. And it was hard to wait to get information. I did a lot of research online and read several books. I am happy to help in any way I can. 

A few questions for you: 

Has she seen a gynocolgic oncologist? Based on my mom's experience and what I have heard other women say on this board it is really important that she see a specialist. 

Have you gotten a second opinion from a different doctor? I have read a lot of posts on this board and there are some very pessimistic doctors out there and others who are more optimistic. I am not saying you will get a different answer from a different doctor but if my mom's doctor had told us what your mom's did I think I would have consulted another gynocologic oncologist as soon as I could. 

How old is your mom? 

Feel free to send me a message and I am happy to provide whatever information I can. Hang in there and take it one day (or minute or hour) at a time. 

Lisa 

 

HellieC's picture
HellieC
Posts: 457
Joined: Nov 2010

Firstly, I am so sorry to hear that your Mum, you and your family are going through this.  It is a rollercoaster of a journey and I wish you did not have to take the ride.

I would certainly recommend a second opinion.  We have examples on this board of ladies with stage 4b who have had remarkable results with chemo etc.  I'm not saying that chemo is a miracle cure, but in many cases, if a patient with late stage illness responds to treatment, then it is possible to treat this beastly disease more like a chronic illness, with periods in and out of treatment, for years.

Of course, each patient is different and the treatments available to them depend on many things, including their age, level of health, co-morbidities etc.  But a second opinion would help to clarify what is available and, sometimes, you just need to find a doctor who makes you feel positive about possiibilities.  Hope is something that every patient needs at every stage of treatment.

With kindest wishes
Helen

NoTimeForCancer's picture
NoTimeForCancer
Posts: 550
Joined: Mar 2013

Your mother sure did a great job of raising you!  Looking to help - and these are the women to help.  Take a deep breath, ask lots of questions and fight for your mom.  We are all praying for you and come back to ask us anything.

Alyne1969's picture
Alyne1969
Posts: 3
Joined: Sep 2013

Hi Brandon,

My name is Alyne and I am sorry to hear about your mom. I was diagnosed with stage 3c Endometrial Uterine Cancer and I have been blessed with wonderful doctors who have worked with me all the way. My best advice to you is to either get a second opinion or chech around to see if there is a Cancer Clinic that helps with low income families. That is what happened with me --- I had a doctor to refer me to the Chattanooga Tumor Clinic in Chattanooga, TN. The doctors, nurses, radiologists and lab techs all volunteer their time there. I don't know of a place like that in your area, but someone from the American Cancer Society or a different doctor might. 

I will keep you and your family in my prayers and hope that something can be done to help your mom. 

Alyne

smitjo2
Posts: 3
Joined: Oct 2013

Brandon I am very sorry to hear of your devastating diagnosis with your Mom. Call the Cancer Treatment Centers of America in Phoenix and see if they can treat your Mom. I took my Mom to the one in Chicago and it was life changing. She has stage IV uterine cancer as well and they have been outstanding. You can't do this alone with just your family. 

They are such a great group of people. If you can get your Mom Medicare then she can definitely go there. Call this number 800-268-0786 and ask to speak to someone about getting your Mom in there ASAP. They help arrange all the travel, hotel stays, meals and can help get any additional funding.

They also don't give up on patients and will do anything they can to help. They also treat the family and not just the patient.

Thank you,

Jodi Smith

 

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