How long did a diagnosis take?

[TLC3299]

I'm curious about how long your ovarian cancer diagnosis took...... My mother (65) has been waiting & waiting...... Over 4 months now.... They keep running more and more tests but ZERO treatments

[shawnamarie223]

Yes!  Fight! Quckly2nd opini??   My aunt (father's side) was going in for a knee surgery in 2007.  When she had difficulty making it up the stairs, even though she was a larger woman, they refused to do the surgery until they could figure out why she was having difficulty breathing.  She (as far as anyone knows) had no other symptoms.  The cancer had spread t her lungs.  It will spread to liver (I believe first) then to the lungs. I hope she gets the treatment she needs.  I am getting disgusted with the healthcare system.  It seems they just dont listen!!!!!

[HVAC]

It is not common for Ovarian to go into the lungs but it is possible. My friend has lung cancer and takes the same chemo I took for Ovarian. She also gets radiation. Ovarian usually stays local which is one good thing about it. It rarely goes to the brain and bone. That is why they need to know if she has lung cancer two. They just have to check it out.

I was throwing up and having diaphragm spasms for two years from the Cancer and I am doing fine now. So may be it will be okay for her to wait a little longer.

At least you have talked to someone. Being in limbo and not understanding what is going on is the hardest place to be.

I am glad you are going down there.

It is important she keeps up good Nutrition. That is half the battle with this treatment. I had to learn to eat whether I felt like it or not. If I had gone into chemo with more weight and had not lost it it would not have been so hard on me. Also hydration. It sounds simple but it is important.

How are you taking care of yourself with the children and mom? Make sure you make even a half hour for you everyday. Everyone needs you to take care of you so you can be there for them. I care I am here.

Alex

[TLC3299]

Thank you so much Alex! You are my saving grace. I feel so lost for her. But I have to believe she will be ok. Boston called her and agreed flying right now will be too risky due to blood clots. They told her to follow the surgeon down there and get the results, try the treatments and consult them if she feels she is not getting anywhere. So I just have to trust them right now. Boston told her they need to figure out if there's two Seperate cancers (lung & ovarian) or the ovarian spread to lungs. Then once they get those results they can devise a treatment plan.
I will drive down with my 3 children on spring break to be with her.
I appreciate you talking to me and the advice you have given is such a comfort.

[HVAC]

Flying might put her at higher risk of blood clots with surgery. That means is they do see surgery in her future.

You are going to wait on call backs that is a real problem. You leave a message and usually they miss you and leave a message. You get a lot of call backs 5 minutes to their closing so they can't do anything that day.

It is a shame because if she is like me I was too sick to fight for myself. I did not even know what questions I should be asking. I just accepted whatever they told me.

At least my surgeon did my surgery fast I have to give him that. I had my consult on Tuesday, CT Scan on Friday and surgery on Monday.

I know you feel so helpless on your end. Does her hospital have a social worker? Sometimes you can work through them, but not always or patient advocate. I was sent to the head of GYN/Oncology Department when I complained about my lack of care.

Usually with Ovarian cancer they would do the surgery and find out what they are dealing with. I can see doing a CT before surgery.They did that and knew I had both Ovaries Cancerous, Omentum Caking, and Cancer on the outside of the bowels. With me they opened me down the middle,. took the omentum (lining of the organs), my uterus, fallopian tubes, ovaries and part of my rectum. My bladder was okay. If not they sometimes turn the uterus into a new bladder. They checked my diaphragm but could not do surgery on it, they also checked my liver (They missed the Cancer there). They did pathology while they had me open and graded my Stage IIIc Clear Cell Ovarian Cancer.They had to leave Cancer in several places. When I woke up they told me I would need six rounds of chemo starting a month after surgery. Sometimes you wake up with a temporary colostomy bag. They did a full pathology report two weeks later.

I just do not get why they are waiting unless they are really short handed GYN/Oncology Surgeons.

I am here for you both.

Alex

[TLC3299]

Oh and they told her she could not fly...... Ummmmm why?

[TLC3299]

I feel like I am fighting and fighting for her and get no where. I know she just needs to be admitted to the hospital and go from there..... But up here! Why they thing 3 wks is appropriate to wait for a CONSULT for a lung dr when she has No lung symptoms. Just do the biopsy and find out how far the cancer is spread and treat it! I just don't get it. I called her Dr today and boston and waiting on call backs. Just so sad and frustrated.

[HVAC]

It is a shame because you either have to be strong advocate for yourself or have someone to do it for you. I am in treatment but I have to correct things every week. If I just trusted the nurses to do their job it would be done wrong. The get the order of my chemo drugs wrong. They forget to schedule me one week. They do not give me contrast with my CT Scans or do not do all of my body with the CT. Then I have to have tests done over.

I have friend who is 78 with Cancer and dementia. The Cancer Hospital treats her like anyone else who does not have dementia. It is scary. She does not even understand her treatment no matter how many times I explain it.

I am a volunteer health care advocate for the National MS Society. It gave me the understanding and tools to advocate for myself.

I had to use my Primary Care when I was not getting the right care she got me switched to another hospital. It took three weeks. If I had been smart and gone to the ER they would have admitted me because I was so sick.

I know it is hard when you do not live in the same state as your mother. I had the same issue with mine. Neither my brother and I lived in the same state as our parents. I had to advocate for my parents. My mom's doctor's nurse treated me like a nervous Nelly until she saw how sick my mom truly was. After that her health care team listened to me.

With Hippa your mom might need to sign permission to talk to doctors. With your dad it makes it more complicated.

The health care is bad about communication. I was having surgery and had no one to ask questions to. I never saw my surgeon the day of surgery or after. I had never had that before. Before surgery they set me up to put a pain pump in my spine no one had told me that ahead of time and I refused.

Even if the Cancer has spread if she gets the right care she can do well. I am proof of that. I was 49 but in terrible shape. Then I got poor care for three months before I switched to Duke.

Alex

[TLC3299]

I agree. THey need to communicate  with her to let her know what is going on and I feel my mom is just not being proactive in her treatment and being assertive.

[HVAC]

Mine took less than a week to be in surgery once they found something on a Ultrasound. I think it is taking too long personally. I actually had Cancer for years and they missed it. I was stage 4 once they finally did surgery. I am not sure why they are waiting except they do not really want to do anything.

Alex