Can't win for losing sometimes

dixiegirl
dixiegirl Member Posts: 1,043 Member
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
I went for my treatment last thursday and my onc said he won't do another scan until I tell him I don't feel right again. He doesn't want to expose me to any more radiation than necessary. Said for each pet/ct scan it's the equivalent of 250 chest xrays!

I figure at this point I am over 1700 and that didn't include my radiation treatments.
I should light up like a damn christmas tree!

I still do like knowing what's going on in my body, but sure don't want a secondary cancer either :(

Just venting here............
thanks

Beth

Comments

  • paulaandersen
    paulaandersen Member Posts: 6
    #2
    RIDICULOUS!
    Dixiegirl, I am a 5 year survivor of NHL and I have been through 7 or 8 Pet-scans and 22 radiation treatments. That's crazy for your doctor to tell you he won't do another scan until you're feeling bad. From what my oncologist told me, Pet-scans are safe and necessary. Unless you have or have had breast cancer, I don't think you need to worry.
  • yesyes2
    yesyes2 Member Posts: 591
    #3
    paulaandersen said:

    RIDICULOUS!
    Dixiegirl, I am a 5 year survivor of NHL and I have been through 7 or 8 Pet-scans and 22 radiation treatments. That's crazy for your doctor to tell you he won't do another scan until you're feeling bad. From what my oncologist told me, Pet-scans are safe and necessary. Unless you have or have had breast cancer, I don't think you need to worry.

    PET or CT scan
    Hi Dixiegirl,
    Actually my doctor brought that up to me a few months ago, that we needed to cut down on the number of scans I have. I have had BC twice with 6 1/2 wks, 33 rads, of radiation to my breast and 15 rads to my axilary. With the NHL I have had 7 PETs, about to do my 6th CT and have had 5 or 6 CT guided biopsys. And that is all just from Jan. 2008. Pretty scary. I feel I'm just a time bomb for radiation exposure cancers, and my doctor agrees. but I'm just really uncomfortable going with out the scans. Oh whats a girl to do. And when your doing Retuxan maintenance, as I was in 2008, you do alot of scans the first year.
    After this scan on Friday I'll either do a PET in Dec. or wait until the 1 yr anniv of completing chemo in Feb, 2011.
    Sorry my post is so long.....guess I like to vent also.
    Leslie
  • yesyes2
    yesyes2 Member Posts: 591
    #4
    yesyes2 said:

    PET or CT scan
    Hi Dixiegirl,
    Actually my doctor brought that up to me a few months ago, that we needed to cut down on the number of scans I have. I have had BC twice with 6 1/2 wks, 33 rads, of radiation to my breast and 15 rads to my axilary. With the NHL I have had 7 PETs, about to do my 6th CT and have had 5 or 6 CT guided biopsys. And that is all just from Jan. 2008. Pretty scary. I feel I'm just a time bomb for radiation exposure cancers, and my doctor agrees. but I'm just really uncomfortable going with out the scans. Oh whats a girl to do. And when your doing Retuxan maintenance, as I was in 2008, you do alot of scans the first year.
    After this scan on Friday I'll either do a PET in Dec. or wait until the 1 yr anniv of completing chemo in Feb, 2011.
    Sorry my post is so long.....guess I like to vent also.
    Leslie

    Hi Paulaanderson, Welcome
    Hi Paulaanderson, Welcome to this board. And congrats on your 5 years with surviving NHL. I thought PETs were safer than CTs but my onc says both are equally bad for you. And here they are always combined with a CT. After initial treatment, once in remission, my onc prefers CTs but leaves it up to me. I worry about the radiation but also realize I need to know what is happening with my body. Like all of us I hope and pray we never have to deal with any type of cancer again.
    Leslie
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #5
    can't win
    Hey Beth, that does suck!!! I had no real symptoms except dizzyness, and if my Onc did not order a P.E.T. scan to be safe, I would have been in worse trouble then I'am now. It really does suck that everything that can cure us from this terrible thing can cause so many other problems down the road, just read all the post's in this forum. I guess all we can do is be positive and trust that all will be well! Good luck and keep the faith.... Vinny
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #6
    vinny59 said:

    can't win
    Hey Beth, that does suck!!! I had no real symptoms except dizzyness, and if my Onc did not order a P.E.T. scan to be safe, I would have been in worse trouble then I'am now. It really does suck that everything that can cure us from this terrible thing can cause so many other problems down the road, just read all the post's in this forum. I guess all we can do is be positive and trust that all will be well! Good luck and keep the faith.... Vinny

    Actually
    I'm ok with the no more scans till needed really. His comment to me was "you know your body" You know when to let me know you don't feel good. I have found that my intuition is right on. I knew I didn't feel right when I had my first relapse and told him. He did the scan and I was right, it was back. Then I was on 6 month checkups and when I started noticing I was losing weight and had one drenching nightsweat I knew it was back. I called them and went in about 2 months after my last checkup and we did another scan....I was right again.

    So far I seem to be right on target. I do pay attention to my body and go religiously for my checkups. I think with more time I am getting more comfortable. My mom died of breast cancer so my likelihood is better than the average person that it may come back. He is relentless on me getting my mammograms....It was kind of funny. When I was doing chemo he asked me when the last time I had one and it'd been a few years. So I'd go for chemo and he'd ask me......got your mammogram yet? No. So, the next round he'd ask schedule your mammogram yet? No. So the third time before I left the office, they had it scheduled FOR me. AND he keeps track and knows when it's due.


    He listens to me. I mean REALLY listens to me. One of the first doctors I can really say I think he listens and does not brush me off. He told me this January that even though the bloodwork looked great, and that I am not a whiner (with a grin on his face) that the sweat and the weight was enough for him to do the scan.

    Sorry, don't mean to run on.

    Take Care,
    Beth

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