Routine PET scan for one in rituxen therapy?

nhldaughter
nhldaughter Member Posts: 67
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi everyone,

My thoughts and prayers are always with you even though life doesn't allow me to visit here as often.
My mom was diagnosed with NHL 3A stage 2 last october and after 2 cyles of Bendamustine-Rituxen, she was in remission. She completed 2 more of that, for a total of 4. Now she is in rituxen therapy every 3 months for 2 years. She's had 3 of the rituxen maintenance so far. She is feeling a bit off, same sort of body pains as before her diagnosis last year so we are panicked! We keep asking the doctor to do a PET scan and he doesn't do it. He says there is no need since she is on rituxen therapy. He keeps saying he'll just monitor her blood and do physical exams. This scares me because in the first place no one caught the lump in her groin until there was an MRI for something else that caught it.
She hasn't had a PET scan for 7 months now. I read in some places that routine PET scans should be done very 6 months.
Please share your thoughts and experiences. What should we do?

Roya

Comments

  • po18guy
    po18guy Member Posts: 1,465 Member
    #2
    Get a second
    Hello! PETs are expensive and show only metabolism levels. They involve radiation that you don't necessarily need. CTs look for masses, and a lot of facilities have re-done their software and now use 40% less radiation. I have had both, and while I have not had a PET for over 2 years, I get a CT series every two months. If I have counted correctly, I have had 21 series of CT scans from head to pelvis. 3A is indolent (slow growing), and while it is likely not considered curable, it is not likely to become a sudden threat, either. It seems like doctor is giving good advice. That being said, a second opinion can be crucial in cancer treatment, as opinions on treatment vary. A second opinion saved my life, as it properly diagnosed me and aggressively treated me. My advice is to locate the largest cancer center in your area with specialists in blood borne cancers. Travel far if you must. Nothing against her doctor, but your mom means much more to you than she does to doctor.
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #3
    Good advice....
    Hi Roya,
    I've thought about you and your mother many times and was happy to see your name pop up with a post. I'm sorry your mom is feeling a bit off and as Po18 has said, a second opinion may be a good idea. It's been 8 months since my last CT scan, and since my diagnosis in June 2010, I have never even had a PET scan done. I think doctors have their own way of doing things, and your moms doctor sounds alot like mine....more on the conservative side of things. I'm also doing the Rituxan maint, finished 5 rounds so far with another year to go. I have had more than a few times where I have felt "off", but my doctor keeps a close eye on my blood counts and says I'm doing fine. With that being said, I will be alot more comfortable with his "fine" thought process once I get my next CT scan in April. Waiting a year between scans to see if the Rituxan is doing it's job has been hard to get comfortable with. If everything looks good in April then I probably will feel better about waiting so long between scans. Please share back what you decide to do and I'll keep you and your mother in my prayers. Much love to you both...Sue
    (Follicular NHL-stage3-typeA-grade2-diagnosed 6/10) age 61
  • catwink22
    catwink22 Member Posts: 281
    #4
    Insurance issue?
    Hi Roya,
    I definitely agree with the others, you might want to get a second opinion, but also... have you checked with your mom's insurance, maybe they are not authorizing it? I just finished my two years of Rituxan maintenance a few weeks ago. I received CT/PET scans (it does both, which I wasn't even aware I was getting until someone on this board said they were and I questioned it) every six months during my maintenance. I did have to fight with the insurance once because they said I didn't need it, but my onc insisted and they approved it.

    I will be getting another CT/PET scan in May and after that my onc said she may do them only every other year because of my age and the radiation (she said I'm too young to be getting the radiation every year). On the years I don't have a PET/CT I will get only a CT, but I do have peace of mind that I am being closely monitored.

    In my opinion, I feel the scans are an important tool that is available to us and we should use them, but there are doctors who feel they are unnecessary. Find out about the insurance and if it checks out ok and you feel that strongly about getting her a scan, DEMAND that she have it. There are times when we have only ourselves to advocate for us and sometimes we have to grab the bull by the horns.

    Wish you and your mom the best, my thoughts and prayers are with you both also.

    Cat
  • nhldaughter
    nhldaughter Member Posts: 67
    #5
    catwink22 said:

    Insurance issue?
    Hi Roya,
    I definitely agree with the others, you might want to get a second opinion, but also... have you checked with your mom's insurance, maybe they are not authorizing it? I just finished my two years of Rituxan maintenance a few weeks ago. I received CT/PET scans (it does both, which I wasn't even aware I was getting until someone on this board said they were and I questioned it) every six months during my maintenance. I did have to fight with the insurance once because they said I didn't need it, but my onc insisted and they approved it.

    I will be getting another CT/PET scan in May and after that my onc said she may do them only every other year because of my age and the radiation (she said I'm too young to be getting the radiation every year). On the years I don't have a PET/CT I will get only a CT, but I do have peace of mind that I am being closely monitored.

    In my opinion, I feel the scans are an important tool that is available to us and we should use them, but there are doctors who feel they are unnecessary. Find out about the insurance and if it checks out ok and you feel that strongly about getting her a scan, DEMAND that she have it. There are times when we have only ourselves to advocate for us and sometimes we have to grab the bull by the horns.

    Wish you and your mom the best, my thoughts and prayers are with you both also.

    Cat

    thanks!
    Thank you all for the advice. Maybe it is an insurance issue. My sister and I have decided we will compose an adamant email to the doctor, since in person he has told us "no" twice already. We will see where that gets us! It does make sense that for her slow-growing type a PET nor a CT may be necessary, but the panick-stricken one in me says to do all the tests to make sure she is clear. Sigh.
    May we all have the strength to fight the disease or watch our loved ones fight it. Sometimes it is extremely hard and gets one down, yet we have to go on.
    Sue, I am glad to hear you are doing okay. I think about you guys all the time. You, John, Fran... I pray for everyone all the time!
    Much Love,
    Roya
  • cookingirl
    cookingirl Member Posts: 183 Member
    #6
    nhldaughter said:

    thanks!
    Thank you all for the advice. Maybe it is an insurance issue. My sister and I have decided we will compose an adamant email to the doctor, since in person he has told us "no" twice already. We will see where that gets us! It does make sense that for her slow-growing type a PET nor a CT may be necessary, but the panick-stricken one in me says to do all the tests to make sure she is clear. Sigh.
    May we all have the strength to fight the disease or watch our loved ones fight it. Sometimes it is extremely hard and gets one down, yet we have to go on.
    Sue, I am glad to hear you are doing okay. I think about you guys all the time. You, John, Fran... I pray for everyone all the time!
    Much Love,
    Roya

    Thanks!
    Thanks for your prayers, Roya. They must be helping because I feel terrific - as well as I did two years ago before my NHL diagnosis! It's so wonderful to read on this site that so many have a strong faith - don't know how we'd get through the Big C without it. I haven't been on in months because I barely get my personal emails read now, but wanted to wish you a Merry Christmas and Happy 2012! Fondly, Fran

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