I think its returned and he wont do a scan!

Kathy14 Member Posts: 1
Agressive-Diffuse large B cell Mediastinal NHL
Age 32 Female

Completed 8 cycles RCHOP and 15 Radiotherapys in January 2010

Hi all, im experiencing similar symptoms, but not as bad, to when i was 1st diagnosed. I told my oncologist when i seen him in July and he said "unfortunately i will experience discomfort and problems and because i look ok, i must be ok!"
He wont do another scan because he said he doesnt like them, my last scan was an end of treatment scan in February, which confirmed the tumour had shrunk, but there was still a little there, but very small.

Im tired again, got `that` cough, pains in chest and back of my shoulder blade....and night sweats, but not sure if its just co-incidence and its generally warm at night, breathlessness...heavy feeling on chest...

I have been told, i shouldnt really be under an oncologist and that i should be under a haematologist??

i dont really wanna call Professor Clark....in case its nothing....or is that just the fact that i dont wanna be told its back!

I start university on Monday and i dont feel 100%....i dont know what normal feels any more....how do i know this just isnt run down or a general illness.....
Its the not havin a scan that concerns me more!! He says what im experiencing is normal, and because the tumour was in my chest, and the treatment ive had, there will be a lot of scar tissue and effects off both treatments...

I really dont know..... :-(

Also my blood results came in on Friday and my white cell count is only 3.6 and my Lymphocytes 1.0.....does this indicate its returned???



  • vinny59
    vinny59 Member Posts: 1,036 Member
    Hi Kathy, Usually a Oncologist is certified as a Hematologist.If you are not comfortable with your Doc, get a second opinion. I know it's tough to wait, but it takes a long time for your body to heal. Your counts do take awhile to bounce back, low WBCs are from the Chemo...... hang in there.... Vinny
  • yesyes2
    yesyes2 Member Posts: 591
    Hi Kathy,

    Sorry your not feeling well. I know how scary it is when you think the cancer is returning. I don't understand why your onc isn't ordering a can, either PET/CT or full CT. That is the standard follow up for DLBC. I was diagnosed with an agressiv B cell lymphoma and had a recurrance, am currently in remission and am being followed with CT scans at least every 6 months. I finished RCHOP in February, had a PET/CT in March, Ct in July and next on is schd for December. I think you need to get a second opinion at a major medical facitlity.

    Good luck to you. Let us know how your doing and what is happening.
  • winthefight
    winthefight Member Posts: 162
    I Kathy, I agree with the others. Perhaps going to get a second opinion may be a good move. See if the second Onc/Hemo gives you the same response. Express your concerns, take copies of your last blood report with you.

    It's always great to seek a second opinion, when you don't agree with your doctor. Best of luck with you. Please keep up posted.

    Take care.