Post-Hodgins Annual Check-Ups: What Tests Should Be Performed

Hodgkins1982
Hodgkins1982 Member Posts: 10
in Lymphoma (Hodgkin and Non-Hodgkin) #1
It's been 30 years since diagnosis of Hodgkins Stage IIa at age 19. Treated at MSK with Radiation and Chemo (not MOPP, the other one). Had CABG 10 years ago as by-product of radiation.

I get follow-ups by both an Oncologist (annual) and Cardiologist (semi-annual). Both request blood work, Oncologist also has me do a annual chest x-ray & thyroid panel and colonoscopys every 3 - 5 yrs.

Here's the question: At my last annual Oncologist visit he was real wishy-washy about getting an annual chest x-ray. At first he said "we're not doing those anymore, too much radiation is not good". When I questioned that and asked whether he's saying this because he thinks I am either too far out to worry a secondary cancer or that the secondary cancer would be the slow growing kind where I could wait two years to discover it, he quickly back-pedaled and said "okay, we'll do one every year, I just had 3 women 20 years out that developed Breast Cancer".

I'd be very interested in what tests other people are getting at their annual check-ups, particularly with respect to x-rays, CT scans, PET scans, etc. I know radiation is bad, but discovering a secondary cancer early might be a life-saver. I've lost some confidence in this doctor since he seems to be letting me guide my own follow-up protocol.

Thanks.

Comments

  • cathyp
    cathyp Member Posts: 376 Member
    #2
    Fellow Long Term Hodgkin's Survivor
    You are all ready on the right track asking what your long term follow up shoude be. Unfortunately, our oncologists and family doctors are not versed in what our proper LT care should encompass. Many LT HD survivors have come to realize they need to take the reins to keep ahead of potential treatment side effects.
    I sought out a Long Term Adult Followup Care Specialist at MSKCC 3 years ago. Before that, my RO knew the most for follow up care. He had me going for stress echos (not with radiation) yearly, mammo every year and a breast MRI 6 mos after each mammo and thyroid panels every 6 mos. This started soon after treatment 23 and 19 years ago. (all but the mri's as this was recently recommended about 6-7 years ago)
    There is a manual that outlines all the recommended followups:

    Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers and can be found here:

    http://www.survivorshipguidelines.org/

    If you do not seek out a LT Clinic, you can print out these guidelines and share them with your doctors.

    A breast MRI detected my Invasive Ductual Carcinoma in 1997. Thyroid panels detected my hypothyrodism in 1996. I have other LT Effects that are being managed by my specialist. My MO, RO, and PCP all defer to him. The goal is to keep on top of treatment effects. One goal is to minimize the use of radiation (mri's vs ct's, stress echos vs nuclear stress tests). The guideline will outline all the tests you need such as a dexa scan, pulmonary function tests, colonoscopy, TSH labs, echos, mammos etc and when and how often.

    I've only had CT's in emergencies and never have had a PET scan in all 23 years, even after the BC. I refuse xrays at the dentist also.

    Good Luck, I'm here if you need anything,
    Cathy

    HD 1989- RADS
    HD 1994- ABVD
    IDC 2007- DBL MX
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #3
    Long Term Care
    Hodgkins1982,

    Wow. "Cat" is the "Long Term Care" expert here, for sure.

    I have no doubt that if you have further questions she will answer them. Sadly, few practices have a specific LTC expert. My provider is one of 27 oncologists in his group, and they are part of US Oncology (1,400 doctors nationwide), so he can tap into whatever databases they may have, but there is no individual who claims "LTC" expertise on site. Some folks go to MD Anderson or Sloan for treatment, but they are a tiny, tiny minority nationwide.

    Post-treatment Protocols are standardized, nonetheless, just as treatments are "standardized" for most diagnostic codes (the "code" the pathologist sends to the oncologist). Doctors have disgression, however, and are not usually required to use a specific medicine if they feel something else would work better. (Insurance companies sometimes will stick in their noses, unfortunately, especially regarding supplemental medications [stuff for nausea, WBC boosters, etc.].)

    Follow-up is no doubt based upon a variety of factors specific to the patient: What strain of cancer you had, how aggressive it was, what stage it was at, what treatment(s) were used, your age at diagnosis, and many other particulars.

    I had an "indolent" strain of HL at Stage III, and my treatemnts ended about 3 years ago. My doc initially did one PET scan, and one CT six months later. Since then, nothing but extensive blood work every six months. He gave me the option of a CT annually, but recommended against it, to minimize radiation. If I had had a more aggressive cancer he most likely WOULD have required annual CTs.

    The whole situation is a set of trade-offs and judgements. Oncologists, I have learned, do often let the patient have a say, since their decisions (like this one) are not always clear-cut. I would not attribute it to lack of back-bone on his part, knowing that.

    It is easy and somewhat common to evolve into a state of perpetual worry, and in a case like that, seeking out or traveling to a LTC specialist might be worth the expense.

    I had a friend who had NHL about 30 years ago, and he did MOPP. He has been in CR since, but did have a thyroid scare last year, but everything tested normal.

    Bless your decisions and health,

    max
  • cathyp
    cathyp Member Posts: 376 Member
    #4
    Max Former Hodgkins Stage 3 said:

    Long Term Care
    Hodgkins1982,

    Wow. "Cat" is the "Long Term Care" expert here, for sure.

    I have no doubt that if you have further questions she will answer them. Sadly, few practices have a specific LTC expert. My provider is one of 27 oncologists in his group, and they are part of US Oncology (1,400 doctors nationwide), so he can tap into whatever databases they may have, but there is no individual who claims "LTC" expertise on site. Some folks go to MD Anderson or Sloan for treatment, but they are a tiny, tiny minority nationwide.

    Post-treatment Protocols are standardized, nonetheless, just as treatments are "standardized" for most diagnostic codes (the "code" the pathologist sends to the oncologist). Doctors have disgression, however, and are not usually required to use a specific medicine if they feel something else would work better. (Insurance companies sometimes will stick in their noses, unfortunately, especially regarding supplemental medications [stuff for nausea, WBC boosters, etc.].)

    Follow-up is no doubt based upon a variety of factors specific to the patient: What strain of cancer you had, how aggressive it was, what stage it was at, what treatment(s) were used, your age at diagnosis, and many other particulars.

    I had an "indolent" strain of HL at Stage III, and my treatemnts ended about 3 years ago. My doc initially did one PET scan, and one CT six months later. Since then, nothing but extensive blood work every six months. He gave me the option of a CT annually, but recommended against it, to minimize radiation. If I had had a more aggressive cancer he most likely WOULD have required annual CTs.

    The whole situation is a set of trade-offs and judgements. Oncologists, I have learned, do often let the patient have a say, since their decisions (like this one) are not always clear-cut. I would not attribute it to lack of back-bone on his part, knowing that.

    It is easy and somewhat common to evolve into a state of perpetual worry, and in a case like that, seeking out or traveling to a LTC specialist might be worth the expense.

    I had a friend who had NHL about 30 years ago, and he did MOPP. He has been in CR since, but did have a thyroid scare last year, but everything tested normal.

    Bless your decisions and health,

    max

    Thanks Max!
    I also want to
    Thanks Max!

    I also want to mention there is a Long Term Survivor discussion board on this website (ACS) too for Hodgkins1982
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #5
    cathyp said:

    Thanks Max!
    I also want to
    Thanks Max!

    I also want to mention there is a Long Term Survivor discussion board on this website (ACS) too for Hodgkins1982

    LTC

    I will stop in at that site some time. I guess three years can be termed "long term ?"

    max
  • Hodgkins1982
    Hodgkins1982 Member Posts: 10
    #6
    cathyp said:

    Thanks Max!
    I also want to
    Thanks Max!

    I also want to mention there is a Long Term Survivor discussion board on this website (ACS) too for Hodgkins1982

    Thanks
    CathyP,

    Thanks so much for your response. The document you referred me to was exactly what I was looking for.

    All my best wishes for a happy and healthy life.

    Hodgkins1982

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