Diagnosed 2 yrs ago

grosie
grosie Member Posts: 5
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi everyone. 2 years ago they found a tumor on my kidney. I had a partial nephrectomy done and was told it was small cell NHL. I have had pet scans done, at times it showes activity, the next one may not show anything. I am in a wait and watch situation right now. The last time my oncologist told me it is stage 4, I am confused and scared, how can this be if there is not much activity? Please help by giving advice, I am not getting any from my Dr. Thanks everyone

Comments

  • Plymouthean
    Plymouthean Member Posts: 262
    #2
    I received my official diagnosis and treatment plan, just yesterday,for NHL, stage 4. My lymphoma is stage 4, according to the doctor, because it involves the bone marrow, - otherwise it would be stage 2. But the bone marrow involvement is 10%, which is not a great concern to him. The lymph nodes involved are only in the lower abdomen/pelvic area, and nowhere else.
    I, too, am somewhat confused. I just passed the five year mark of survivorship of lung cancer. I had a good understanding of that situation, but now I have a lot to learn about NHL.
  • donaldo
    donaldo Member Posts: 36
    #3
    I believe your doc diagnosed it at stage 4 because it involves the kidney instead of just lymph nodes. I'm surprised he even gave a stage, most avoid it. The watch and wait may be really aggravating, but even though you'd rather be doing something, it's better then having to do something.
  • grosie
    grosie Member Posts: 5
    #4
    donaldo said:

    I believe your doc diagnosed it at stage 4 because it involves the kidney instead of just lymph nodes. I'm surprised he even gave a stage, most avoid it. The watch and wait may be really aggravating, but even though you'd rather be doing something, it's better then having to do something.

    Thanks for the reply, I will check with my doctor next time re. the stage, I wanted to know, maybe not such a good thing to ask since it got me very upset and I don't seem to be able to get it out of my mind.And yes, it seems like both my kidneys are involved at this point. Thanks again for your reply.
  • rocksand
    rocksand Member Posts: 4
    #5
    hi,I was diagnosed 3.5 yrs ago with speenic and bone marrow involement and stage 4.I have a subtype with mantle cell lymphoma. I'm on a dif protocol of ritux plus velcade. I know drs don't like to tell us much but if you want to know pursue it and ask.
  • rocksand
    rocksand Member Posts: 4
    #6
  • mbstarr
    mbstarr Member Posts: 1
    #7
    The stages refer also to where the cancer is..for example in just one small area of body as opposed to 2 or more areas..I had stage 3 lymphoma because i had cancer in my spleen and also a few lymph nodes in neck area and one in chest area. So they viewed it as being in multiple quadrants of the body...thus stage 3.
  • delbus
    delbus Member Posts: 2
    #8
    Hi Grosie and all who replied to you. Am I glad I found this site. Wish I had months ago. I was diagnosed with mantle cell lymphoma this past April. I am on a schedule of Rituxin and Thalomid (thalimide) capsules that I have to take every night. I have gone from once a week for a few months, to every two weeks and once a month. The docs are trying me every two months now so I will go back in Mar. However I have a port and have to have it flushed every month - will go locally for that. I also was told that mine was a stage 4 (didn't ask) but knowing nothing about cancer I didn't realize what that meant at the time. I was told that there is no cure of remission for this but they can try to keep it under control with the treatments. I couldn't breath or walk when it was coming on, but I and my primary though I had a viral infection going around. I ended up in the hospital and found out it was cancer. I was stunned, and scared like you but had to put up a fron for my kids and grandchildren. I am a senior, but have been in pretty good health til now. I try not to dwell on it, but once in a while it's hard. Most of the time, i'm grateful that I'm still here. The doctors are amazed at how well I have done. I have even gone back to driving from my home in the south shore to NH to see all my children (sounds like a soap). After the shock wears off, I hope you will be able to do as that popular saying goes "one day at a time". That's working for me mostly. I forget I have it sometimes and do much too much and get overtires. Oh, well, all I can say is it certainly spurred me on to clean my closets and get ride of all kinds of "junk" i have been saving for many years. I hoped I have helped your spirits a little. Keep the Peace.

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