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  • Lymph node positive

    Posted by Tom on November 22, 2011 at 3:03 pm

    Good morning,
    I could sure use some advise. Was diagnosed with invasive bladder cancer in may of 2011 and started chemo prior to my RC. Was suppose to have 4 rounds of cis/gem but had to stop after 3 due to hypotension. My blood pressure would drop quickly and I fell several times the last time breaking my ankle. Was then scheduled for surgery with a neobladder in august. I had 32 lymph nodes removed and one was positive on the pelvis. It appeared to be incapsulated. I’m getting along ok post surgery with only the expected complications but have this deep nagging feeling that I’m not going to make it due to the one lymph node. I’ve asked for feedback on other sites to hear from others in my situation but haven’t heard from anyone which makes me even more nervous. Guess I shouldn’t have asked the question.

    I’m not able to take more chemo and the docs say I just have to go on with checkups.

    Is there anyone out there who has lived with positive nodes and doing ok. I would sure like to hear from you.

    Thanks very much.
    Tom

    Lynda replied 13 years, 2 months ago 4 Members · 4 Replies
  • 4 Replies
  • lynda's avatar

    lynda

    Member
    November 22, 2011 at 7:26 pm

    HI Tom –

    I was Dx’d in May 2010 with BC and had my RC in June 2010. All my post op tests came back as clear and the nodes (27) they took were all clear. I thought I was all set, but found out that I had MEts to the lung in MAy 2011. (No I didn’t know I was supposed to be monitored every 3 months). BUT I am receiving chemo now and the tumors are responding. It’s almost harder to get thru the 2nd dx than the first. I’ve had the best support at home and at treatment, I’m so lucky, but the reality is that no one knows what’s going to happen. Talk to your Dr. about your concern about the node. They are your best source of info and don’t let them put you off! “Everything’s fine!!!… is not enough – you need more info to understand and find a good place to be with all that’s happened to you.

    Jmemas note on suppliments is a good one to also run by your doc. Mine did suggest a multi, vit D, calcium…, but be sure to get good sources for vitamins.

    Also, get an idea of what your dr. is planning for future testing and at what timeframe. This may help you to feel not so abandoned. Again, they are the dr. you are the patient, but that doesn’t mean that the medical pros are the final say in all areas. If your Dr. won’t work with you or you feel unattended to, it’s time to find a better dr.

    Keep us in the loop, we are here for you!

    Lynda


    Lynda

    3 years UTIs
    Indiana Pouch – July 2010
    Pulmonary Met. – May 2011
    Chemo started June 2011

  • jmema's avatar

    jmema

    Member
    November 22, 2011 at 5:35 pm

    I am and always have been a big believer in Vitamins, supplements and herbs and took them for many years. They made me stop when I started my chemo because they said they would interfere.
    I would talk to someone knowledeable before you do it but I would be taking astragalas for my immune system, Vit. A, Vit.E & C.
    I wouldn’t worry too much about an encapsulated lymph node. Being anxious won’t change what is or what will be so just live every day to it’s fullest.
    Blessings….Jean

  • Tom's avatar

    Tom

    Member
    November 22, 2011 at 4:26 pm

    Thank you Sara. I’m sure there are others out there I’d just like to hear from them and maybe connect. Thanks for changing the posting.

  • sara.anne's avatar

    sara.anne

    Member
    November 22, 2011 at 4:01 pm

    Tom, your post was moved to the “metatastic” category because more people who might have advice for you would see it here.

    So sorry to hear of your recent bladder cancer journey. Of course it would have been much better if there had been NO lymph node involvement. However, one node, and encapsulated at that, is about as good as it gets at this stage.

    While I am no expert in this area, I know of people who have gone on to have no more cancer with much more initial spread.

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator

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