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New caregiver looking for support

TrippinToni
0 Recommendations

I am not sure if I am in the right place. My mom has RCC and had a kidney removed with spots found on her liver and lung. She has had three MVAC treatments and I do not see anything saying MVAC is for RCC. Each time I google is leads me to a bladder cancer site. The doc thought my mom had a bladder infection and treated it for almost a year before I took her to the emergency room and they found cancer in her kidney. Kidney was removed and now she is going through chemo. The doctor does not speak English well and I cannot understand most of what he says, yet my mother refuses to see another. I am at a loss.

Explore topics in this discussion:

Cancer Surgery Pain Alli Depression Kidney cancer Bladder cancer

15 replies

silgal

Hi Trippin Toni, I just wanted to welcome you and say sorry you have to be here, but glad you found us. I believe there is also a page on Inspire for kidney cancer... but wait and see who responds on here first, as there are many knowledgeable and informative people who are on this page/site.
You are a good care taker and my best to you and your mom.
michelle

LadyJane123

I tried to find a link for an Inspire Kidney Cancer site but couldn't locate one. Maybe someone can find it? I am sure there must be one.

Toni, so sorry you are having to deal with this. It would be very frustrating to not understand what the doctor is saying. Is there someone who can go with you next time that speaks his language and will interpret for you? Or possibly take a recorder ( I have done so) and then replay and replay until you understand what he is saying?

Good luck, I am sure we'll find a support group thats all about RCC.

jj803

I am not aware of current chemotherapeutic regimens for renal cell carcinoma, but if you go to cancer.gov you will be able to navigate to kidney cancer and find pdfs that address current treatments. As you probably already know, not all kidney cancer is RCC and many are transitional cell or urothelial which would be treated similarly to bladder cancer. I hope the web site suggested provides some help. There was also a fairly recent article on treatment of kidney cancer (rcc only I think) in an online cancer magazine (I have forgotten the title of the mag, but when I think of it I will post that info). You might also subscribe to uroalerts (at uroalerts.com or .org, and check for rcc info. Best wishes,

JJ (maybe the e zine is cancer today (free)

Karego

TToni, Also, try CancerCare.org
We've found we must be our own advocates to learn about bladder cancer or anything to do with renal/urinary problems. All too often, our symptoms are either ignored or mistreated.
Stay with us and learn all you can here while you search other places.
To be the best advocate for your Mom, make sure you get copies of all tests and pathology reports. Ask for a second opinion to confirm diagnosis and current treatment.
Click on Beth's profile to the right under group leaders and send her a message asking for an Inspire Kidney support group. If Inspire has one, she will direct you to it.
Hopefully, we can be a help to you too.
M-VAC is a treatment for many of us here. Some have finished with it before their surgery and some are having it post surgery.
Karego

nancynursez637

The other thing you might want to consider is a discussion with her doc about what you cannot find, and listend to his explanation. If you are not satisfied then, I would consider a second opinion just to be sure you are on the right track

NancyN

roadrunner

Welcome ,,,my husband had b/c surgery to remove his bladder,I can tell you compassion was what got me through,it was stronger than any other force i would recon with,,,,,,fear is there,anxiety,,,depression,,,compassion and love beats them all,,,I would find a major cancer facility,get a second opinion,,,,it may change things for you, and give you a new perspective....ginger

TrippinToni

You mean compassion for my Mom? I have that. Or I think I do. Sometimes I am furious with her for her bad health choices throughout the years. But it is too late for that. I want her to get better.

mycopper

I had a problem understanding the cardio doctor we were sent. I finally told our family physician we couldn't understand a word he was saying. Our family doctor recommened another dr. Maybe your Mom would go that route if she trusts her family dr.

candy

roadrunner

Trippin,
What I meant was its hard to know what to do sometimes, especially if the doctor isn't clear,or you just can't understand him,,,,about the compassion, I am sure you have alot of that for her,,afterall ,shes your mom...obviously your very caring ,or you wouldn't be seeking info for some support,,,,being pro active for your mom ,,,my suggestion would be a second opinion,now trying to convince mom ,,,drop back in and let us know what you decided,,,if maybe the doctor could explain better,,he may refer you for a second opinion,if hes a good doctor he will....

Ginger

TrippinToni

Everything happened so quickly. The emergency room, the surgery. the chemo and my Mom would not go to another oncologist. Her oncologist has been her GP for the past 25 years. She started using him when she took a friend for an appointment years ago. He treats her for everything from a cold to a rash. Which is one reason I am so unhappy with him. He was treating her for a bladder infection for over a year when I finally took her to the emergency room with horrible ongoing unrelenting pain. The ER is the one who found the tumor after waiting eight hours. He is an oncologist. My mom is in her right mind so I could not force her to see another doctor. She has two more treatments and at that time I am going to take any reports I can get from the doctor for a second opinion. My mother does NOT want me to do this. She does not want to hurt his feelings. I am at my wits end.

georgiaE

Trippin,

I am so sorry your mom is having to go through all of this. She sounds like my grandmother. They get settled in their own way and don't take well to change. It would be a great idea to get copies of everything, make more copies and take or send them to another oncologist for a second opinion. My husband of 40 years has terminal bladder cancer with mets to his liver and was given 4 to 8 months to live. We are looking for more time. We got multiple opinions, but not in time to save Ed's life. We took everything with us to the appointments and they reacted their conclusions by looking at these reports, so you could go without your mom for a consult. No need to upset her right now. After you have more info and another opinion, you can tell your mom and she may listen then. Keep up the good work and faith! You are a good son.

Love,

Candon

TrippinToni

Candon,
Thanks for the encouragement. I am the oldest daughter out of five children. I live 1000 miles away from my mother and have spent 5 of the last 7 months with her. This of course keeps me away from my husband, children and grandchildren. I do have three brothers who all live within one block of my Mom, but I think she needs me. Right now the most difficult thing is getting her to eat. The chemo does not make her sick to her stomach, surprisingly. She just will not eat or drink. For the past three days my brother has had to take her to the doctor for a one and a half hour does of intervenous fluids because she had dehydrated. She is losing weight. I am so frustrated because I feel like I have to go to her just to force feed her. She can eat. She just says she is not hungry. My Dad passsed away four years ago and my Mom has not been the same since. Funny, because all they did was argue for the past 53 years. Anyway, it is not like she has given up. She does not talk about this being a terminal illness, but looks forward to the chemo getting finished and feeling better. To be honest, her doctor did not even want her to know about the spot on her liver and lung because he was worried about her going into a serious depression. Right now I do not even know what her prognosis is.

Crazyhorse2

TrippinToni this is one of Inpires links for kidney cancer that may be of help to you. CrazYhorse

http://www.inspire.com/groups/kidney-diseases/

nadiaesp

the only thing I can think of is to hire a translator. If it is between French and English I can help.

jj803

Hi again,
Sorry about the wrong name for the magazine. It is Cure.

JJ

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