Very confused over new diagnosis

confusedinfl
confusedinfl Member Posts: 1
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
my mom was first diagnosed a few months ago with Waldenstroms- a very rare form of Lymphoma. According to her, her oncologist- after a bone marrow biopsy- diagnosed her with a second form of lymphoma- B cell. She was supposed to immediatly start very aggressive chemo. She put it off to get a second opinion at a top cancer center. Today she went and they told her not to have the chemo (it was CHOP-R) that there was no reason. They are waiting 2 months now, and when she does have chemo they said it would be low-grade with little to no side effects. My mom is very, very afraid and very, very confused. Her local oncologist, basically told her that she would die if she didn't start the aggressive treatment immediatly. The cancer center, said that that was the "old school" way of doing things, but was not necessary. But, my mom is so confused and dosn't know how to believe. She is afraid to wait, and thinks it will spread in 2 months and she will die. But, we (the family) think a top 10 cancer center knows better what to do. We are all just so confused. The hardest part is that my mom dosn't know enough about her diagnosis. She usually ends up breaking down at the doctors office, and they have to medicate her- so my dad tries to get the details, but he's not that much better. She asked what I think she should do and I am just so confused. She is also upset that her local onc put a port in her- it has been VERY painful for her. The cancer center doc told her that was totally unnecessary, and that they put it in wrong. It's hurtful to her, because she loved her local onc- he was the ONLY person who would make her stop crying and feel better. Now, she is having a hard time not believing him, and is lost and confused.

I am not sure what my question is. We are just confused. Has anyone else been told it is ok to put off chemo treatment? We were under the impression, that she had to be aggressivly treated immediatly.

Thanks, sorry very long, we are just all very confused, and mom is so, so, so sad and depressed, and feeling extremely hopeless right now.

Comments

  • benita
    benita Member Posts: 13
    #2
    I'm not familiar with your mother's type of lymphoma but I think you can never go wrong in getting a second opinion with a life-threatening disease. I was diagnosed with a low-level lymphoma but Stage iv. I had my slides from the bone marrow biopsy fed ex'd to a lymphoma specialist at Vanderbilt and he, too, stated that I could probably have not needed chemotherapy. However, I was experiencing symptoms from a severely swollen spleen and needed to be treated. I've been told that sometimes it is preferred to wait on treatment because the more times you get CHOP/Rituxin treatments, it can wear your body down and you may one day need your strength for a bone marrow or stem cell transplant. I guess it all depends on if your mother is experiencing symptoms that need to be treated. I think that lymphomas often times will need several rounds of treatment. Well, I hope this helps. Of course, I'm not a doctor at all, I just wanted to share my experience with the decision to get treatment based on second opinions.
  • dawif
    dawif Member Posts: 1
    #3
    I am not familar with this type of cancer. I was diagnosed with Large C Type B Lymphoma Stage IV.I was give a few months to live. I underwent Chop-R. With the help of anti-nausea meds I made it through it ok. The treatment is rough, you feel very worn down for a few days and then start feeling better and then you do it all over again. I am now 3 years in remission. Two more years before we can call it cured. I can't imagine what the outcome would have been without the treatment, it was worth it to me and my family.

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