• Where do we start?

    Asked by Mcw3b on Sunday, October 22, 2017

    Where do we start?

    My mom is my best friend. Over the last 3 weeks, she/we have received a diagnosis of bladder cancer which has probably gotten into the nearby lymph nodes. We will meet the oncologist for the first time this week. What do we do next? How do we choose where to get a second opinion? Any advice welcome. Thanks!

    13 Answers from the Community

    13 answers
    • Carool's Avatar
      Carool

      I'm sorry she's ill. I had breast cancer, though I know five men who had bladder cancer and who are doing well after many years. I always suggest that, if possible, the patient should go to a major cancer hospital or satellite of one - and never to any of the Cancer Centers of America. A university hospital is also good. Formulate all of your questions. I'm sure others on this site will offer you advice more specific to bladder cancer.

      If you and your mother like and trust the oncologist you're meeting, and trust the hospital, you may not want to get a second opinion.

      I wish you both good luck. Let us know how you two are doing.

      29 days ago
    • GregP_WN's Avatar
      GregP_WN

      We are sorry for your Mom's diagnosis. My Mom went through cancer too, so did my Dad. It's a tough thing to do, watch them go through when there's not too much you can do to help, or to make it stop. You will get some good information on second diagnoses, and step by step things to do. For now, take notes, ask lots of questions, and keep asking them until you get answers and you understand the answers. If you don't like them, ask more questions. Find out precisely what type of cancer, what stage, what is the prognosis, what is the plan of action. Surgery, chemo, radiation or what? It doesn't hurt to ask them if it was their mother, what would they do?
      Our best to you both.

      29 days ago
    • hoosierboy's Avatar
      hoosierboy

      Sorry for the bad news. Mom is always the one we kids can't stand to have anything go wrong with. It's tough to be there and have to watch it all. Be there as much as you can, even those small, tiny little things will be the big things during her biggest time of need. Believe it or not, you will look back on this and be thankful that you were able to be the one to take care of her. Not thankful for her condition, but for having the honor of helping her heal and care for her, just as she cared for you when you were a child. It's a complete role reversal.

      29 days ago
    • geekling's Avatar
      geekling

      Very sorry. You Mom is lucky to have you. I like big university hospitals. Teaching hospitals attract people who are engaged and up to date. See the biggest shot you can. Way back when, I used a book called Best Doctors, which has since morphed into a website and now an adjunct of certain insurance companies.

      Just be sure your second opinion isnt a rubber stamp of the initial opinion. In other words, dont let the first doc recommend a second one.

      Best wishes

      29 days ago
    • SandiA's Avatar
      SandiA

      Hi, I am so sorry you and your mom are going through this. My mom was also my best friend and I helped her when she was diagnoised. So my heart goes out to you. I am so glad she has you. I agree with the advise others have given. I am currently treated at a university hospital and feel it has been a good choice for me. I did get a second opinion at another university hospital. My surgeon worked at a different hospital and he set it up for me. One thing that helps a lot is to have someone go with me to all my appointments. I write all my questions down before I go and I take notes but sometimes it can be a little overwhelming and it helps to have someone else there to hear what I miss. One time my doctor was rattling off names of. drugs and treatment choices and I stopped and asked him to write it down on my note pad. He did willingly. I wish you both all the best and please let us know how it goes. Sandi

      29 days ago
    • Skyemberr's Avatar
      Skyemberr

      Make sure she is in touch with the palliative care team. It is very hard to fight cancer while you're in excruciating pain. The palli team will make sure she is hurting as little as possible as she goes through treatments, and if your hospital is like mine, will likely have a social worker to help you and your mom with counseling, and also all of the weird and unexpected things thst come up when you have cancer, like not wanting to eat, etc.

      Another person to see may be the wound care nurses, but that would only be if she looses use of her bladder. Hopefully it won't come to that, but if it does, they can fit her with the best bandage and teach her how to keep it healthy.

      29 days ago
    • happydyad's Avatar
      happydyad

      When I seek second opinions I keep the first opinion “under my hat” so that the second team isn’t taking the easy way out by mimicking the first. Also, I always ask if the recommendation is what the doc would want done by him/herself (or his/her mother). Is there an alternative that is not standard medical protocol but maybe equally/more viable in this particular situation? Your mom is so blessed to have you as her champion! Be sure to take as good care of YOU as you do of her! Hugs! Judy in Ky

      29 days ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      First, take a deep breath. Sounds like you have it together, but the better you handle it, the easier it will be for Mom, as she won't have to worry about you. Other than just universities, you might want to check out US News & World Reports. They list the best hospitals in each field. One might be near you, or have an affiliate near you. Here in Columbus, OH, we have the James, which is connected to Ohio State and is well respected. My hospital, Riverside, is now part of MD Anderson's network, another prestigious cancer hospital. With a little bit of research you should be able to find some options near you and your Mom. Good luck. Hope all goes well for you both.

      29 days ago
    • BoiseB's Avatar
      BoiseB

      On behalf of all mothers who have had to rely on the care of their children I want to thank you. My children were my rock during my cancers. I am going to recommend I resource that I found extremely valuable during my second cancer. It is a two volume set, A Guide Book and a Journal. It has tips on everything from finances to survival after cancer.
      https://www.livestrong.org/what-we-do/program/livestrong-guidebook
      As a mother whose caretakers were her children, I know some of the wonderful things my children did for me. My children allowed me to do as many things for myself as I was able.
      As for research, I was fortunate that my nephew is a primary care Dr. and he found my an excellent second opinion.
      If you are doing research, I do NOT recommend the public interned. If there is a University or even a community college with a nursing program near you I recommend that you go there, I have been a University Reference Librarian and I know that most university libraries are willing to help members of the community

      28 days ago
    • JCPV's Avatar
      JCPV

      Sorry to hear about your mom, a cancer diagnosis is always very stessful.

      I had stage 4 Bladder Cancer which had metasticized to other places including the lymph nodes. I went to UCLA. I recommend a University. Get to the most respected facility you can. I had great luck with immunotherapy, I went on the Medi-4736 clinical trial. I have been cancer free for a little over 2 years. It doesn't work for everyone but is well worth looking into. I beleive there are clinical trials with a combination immunotherapy plus Chemotherapy for those that don't respond to immunotherapy alone.

      Best wishes!

      28 days ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I have lung cancer so have no direct experience. I have a friend who had bladder cancer. She's doing quite well.

      I would choose a hospital that has its NCI designation, if possible:
      https://www.cancer.gov/research/nci-role/cancer-centers/find

      I would encourage you to find an oncologist who offers hope.
      I would look for one who treats me as an equal, not like an idiot because I don't have a medical degree.
      I would want my doctor to take as much time as I need to understand my options, his recommendations and the reasons for his recommendations.
      You are putting your (mom's) life in the hands of this person. You must trust him and feel comfortable with him.

      28 days ago
    • erink's Avatar
      erink

      I was diagnosed in Jan. 2015. After 3.5 months of chemo the protocol was to take my bladder out.
      Because the chemo did nothing...in fact the cancer grew and was now in my lymph nodes, I was told from a team of 6 doctors theres was nothing they could do...I should "Go home and make arrangements" and my expireation date was somewhere around Dec. 2015.
      WHAT...WAIT!!!Im only 59!!!
      I began a wild search for life and with my oncologist (against his fellow teams affirmation, found a clinical trial in Iowa. after a grueling fight with the insurance company and requirements met for the trial, I began a bi weekly visit to Iowa for Immunitheropy. After 2 years of that the drug was approved. Because the drug had some negetive effects on me (nothing near Chemo) I have been off the drug for almost a year and my last quarterly CT Scan showed nothing. The drug is called Nivolumab.
      Dont give up!!!
      Dont stop living your life, or fighting for it
      Live in the moment...We can tell ourselves terrible future scenerios when diagnosed with this aweful disease. Look at what is in front of you at the moment and work from there. Live minute to minute if you have to.
      And finally, after all the scarey thoughts of death etc,you have to forget about the cancer...Keep working...force yourself to do the normal things. Its scarey to think we have no control...but its true.
      So let go of that thought and just live.
      I didnt get to this point with out having the mental anguish. The crazy things that tore through my head everyday while fighting this disease.
      It wasnt until I realized Im not at the controls...that I never was....NO ONE is for that matter!! Once I let go of that...living with cancer was easier.
      Erin
      Wisconsin USA
      [email redacted]

      25 days ago
    • erink's Avatar
      erink

      PS. Talk to mny doctors. I highly suggest University hospitals because they get the trials.
      Erin k
      Clinicaltrials.gov Check it out!

      25 days ago

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