No scans???

RonWatt
RonWatt Member Posts: 12
edited March 2014 in Colorectal Cancer #1
Its been great to read all the wonderful reports on the site.Congratulations to all!!!I have something that is kind of bothering me. My oncologist says that they don't do ct scans or pet scans. He said they just look at the blood test results.Has anyone else been told this.I feel like early detection of recurence would be very important.He's been just great to work with but this kind of scares me.

Comments

  • rthornton
    rthornton Member Posts: 346 Member
    I have NEVER heard of an oncologist that doesn't order CT and/or PET scans. Maybe he earned his degree from a correspondence school? I think I would consider a second opinion from an oncologist who believes in the value of modern medicine and diagnostic tools. Wow ... that's really weird. I don't blame you one bit for feeling scared about that.

    I hope you find someone who offers you better peace of mind. Good luck with that!

    Rodney
  • HDS
    HDS Member Posts: 1
    Mine does blood work, diagnostic CT's and PET scans. I've felt better knowing that they're checking me with everything they have just in case one method isn't "picking up a signal." But what's most important is your comfort level. You're the one ultimately responsible for your care and if you want the additional tools, then it's time to look for another doctor.
  • kerry
    kerry Member Posts: 1,313 Member
    Ron,

    No Scans?? I am being treated at MD Anderson Cancer Center in Houston, notably one of the best cancer centers in the world - they do my scans every 9 weeks right now, along with blood work. I suspect that in a couple more months, they will go to every three to six months....but I've never heard of a onc. not wanting ANY scans. My previous onc. didn't believe in many scans and relied on the blood work until I insisted on a PET scan (just had a bad feeling) Lo and behold, my cancer had recurred. The onc. didn't believe it and had the scans reread and then did a biopsy on an englarged lymph node in my neck. Long story made short, I am now seeing a NEW doctor who take very good care of me.

    I know there are side effects of too many scans, but as we all know here at this site, EVERYTHING causes cancer....even scans. I'd rather know than not.

    Kerry
  • mwomack
    mwomack Member Posts: 78
    It would depend on what stage you are. I do not believe ASCO recommends surveillance scans for Stage III.

    Summary of ASCO guidelines for colon cancer surveillance
    History and physical examination: Every 3-6 mo for first 3 y and annually thereafter; should include test coordination and patient counseling.

    CEA: Measure levels every 2-3 mo in patients with either stage II or stage III disease for at least 2 y after resection of tumor and liver metastases.

    Liver function tests: Data suggest that regular monitoring is unnecessary.

    Fecal occult blood test: Not recommended for surveillance for colorectal cancer recurrence.

    Chest radiography: Not recommended unless CEA level is elevated or patient has symptoms suggestive of pulmonary metastasis; panel did not reach a consensus on this point.

    Colonoscopy: Every 3-5 y to detect new cancers and polyps; routine annual colonoscopies not recommended for all patients.

    Not recommended: Routine monitoring of CBC, pelvic imaging, CT.

    Key: ASCO, American Society of Clinical Oncology; CEA, carcinoembryonic antigen.

    Source: Benson AB, Desch CE, Flynn PJ, et al. 2000 update of American Society of Clinical Oncology colorectal cancer surveillance guidelines. J Clin Oncol. 2000;18:3586-3588.

    My husband had a Pre-surgery CT, a PET Scan 1 month after surgery (because the Pre-surgery CT showed absolutely nothing), and a CT after chemo. The oncologist had ordered another PET but insurance would not approve it. He thought he could get another PET because the PET 1 month after surgery showed a hypermetabolic lymph node that could be "post-op inflammation or carcinoma."

    I do not think he will have any more scans unless the CEA begins to rise.

    MA
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    Ron -

    I think you should find a different oncologist.

    A PET/CT is, as I understand it, the best way to follow the disease. Sometimes they even want to throw MRI's into the mix as all these tests give slightly different perspectives on the disease.

    Normal blood chemistry is necessary but sure not the only thing that should be done. CEA is "interesting" according to my oncologist and "one piece of the puzzle" but in the end "not all that valuable". My CEA, for example, post surgery, but pre-chemo is 0.5. I should jump for joy, except we know from biopsy done during surgery and from CT done pre-chemo that I have one small liver met.

    So, personally, I think an oncologist who is relying only on blood work is not providing good or standard medical care. At an absolute minimum, if I were you, I would consult with a different doctor.

    Good luck.

    P.S. I'll be going for a second PET/CT the last day of my second cycle (8/26). Hopefully results will be positive enough that I'll start consulting with liver oncology surgeons during my 3rd cycle.

    Betsy
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    Before you rush out and try to find a new oncologist, perhaps you should be asking him this question rather than us. I know we all have opinions that you can take into consideration, but we are not doctors. I too am treated at MD Anderson but my onc there felt that every 3 months was a bit excessive and has told me that MD is now going to every 4 mos. At least in the GI dept....
    At any rate, blood work is not a good indicator for everyone, but for some folks, myself included, it is really quite accurate. Also, it is true that a CT scan can show very small nodules, but there is often nothing to be done surgically until they have reached a certain size (around 1cm for lung mets, for example). I wish my doc would say it was OK to just have blood work. I do not want to be exposed to all the radiation from repeated scans. For example, last year in Feb. of 04 I was found to have 2 spots on my lung of unknown origin. The thoracic surgeon said they were too small to operate on. My CEA was .9. I had a PET scan which came back negative. Then in May I had a CT and the radiologist said they (the nodules) were granulomas. Then in August my CEA was like 1.8 or something and the nodules had doubled in size. My PET at that time was again negative. In October when I had my surgery to remove them they were approx. 1cm in size, my CEA was 3.6 or thereabouts and my PET was finally positive. In otherwords, I could have gone from Feb. to Oct. w/o all of the "you have cancer, you don't have cancer" BS and it would have spared me a lot of peace of mind.
    That is my opinion on the matter.
    The decision whether or not to seek another doc is ultimately yours to make.
    Best of luck to you, Susan.
  • scouty
    scouty Member Posts: 1,965 Member
    Hi Ron,

    If my memory is correct, you live in Australia. Right????? Your health care system is so different from the one we have here in the US and I am not sure which one is right or even close to it. It really all is about best guessing anyway. Trust your gut and if you need to seek a second opionion and it doesn't stress your pocketbook too much, do it. BUT bottom line, trust your gut. Those of us from the US forget how others can and do get treatments in other countries. The actual survival rates don't reflect which country's health plan is better, so who am I to question the approach. Great question, but only you can make that kind of a decision. If you trust your doc, that is half the battle.

    Lisa P.
  • taraHK
    taraHK Member Posts: 1,952 Member
    Working with a doctor you like is hugely important. Mwomack's post below is right in that most approved guidelines do not call for routine CT or PET scans. But, like a lot of other medical centres, mine does do routine scans. In my case, especially because my CEA (blood marker) was never elevated. I am a strong supporter of routine CTs. Agan, in my case, a routine CT detected a very small tumour in my lung (two years after my original diagnosis/surgery) - when I had no elevated markers or anything. It was caught so early that I was able to have surgery to remove. I feel like that routine CT saved my life! (Also, they were able to compare with a CT done a few months earlier, to see the change...)
    Might your doc be agreeable to a routine schedule of scans even tho it is not their usual practice? I realize their might be implications for insurance -- but maybe s/he can find a way around that....
    Good luck
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    taraHK said:

    Working with a doctor you like is hugely important. Mwomack's post below is right in that most approved guidelines do not call for routine CT or PET scans. But, like a lot of other medical centres, mine does do routine scans. In my case, especially because my CEA (blood marker) was never elevated. I am a strong supporter of routine CTs. Agan, in my case, a routine CT detected a very small tumour in my lung (two years after my original diagnosis/surgery) - when I had no elevated markers or anything. It was caught so early that I was able to have surgery to remove. I feel like that routine CT saved my life! (Also, they were able to compare with a CT done a few months earlier, to see the change...)
    Might your doc be agreeable to a routine schedule of scans even tho it is not their usual practice? I realize their might be implications for insurance -- but maybe s/he can find a way around that....
    Good luck

    From an ozzies point of view.Hiya Ron. I was dx'd stage 2, surgery then 6 months 5fu/leucovorin. My post op situation is bloods for CEA every 2 months, ULTRASOUNDS of liver and upper abdomen 3 monthly, colonoscopy within 2 years of surgery. Here in oz I think that cost dictates the frequency/or use of CT's or PET's etc. That is my opinion anyway. The use of ultrasounds is much cheaper and I guess from the governments point of view does not financially strain the medicare system.Gov'ts seem to have a pet hate toward prevention than cure. My thinking is along the lines of preventative screening...it could be done...powers that be just seem to have $$$$$ signs in mind. Just imagine how much money could be saved preventing advanced bowel cancer in the first place! At the very least Ron, I would expect you to have ultrasounds. Myself, well, I would like to occassionally have a CT to put my mind at rest as the ultrasounds can only pick up a tumour that is a certain size, usually larger than a CT will detect one. I guess also that one of the advantages of ultrasounds is there is no radiation...sound waves are used.(similar to an echo sounder on boats)
    In my early months post op. I found another doctor more sympathetic to "my" needs.
    cheers, kanga n Jen
  • juana
    juana Member Posts: 1
    Hi Ron. I have found the PET scan to be the most refined way to pick up rapidly growing cells. My CEA hasn't always been reliable, but the PET even picked up a small skin cancer that was unrelated to colon cancer. Radiation is a concern, especially after receiving radiation treatment, but monitoring the cancer is my priority.
    It seems that intuition about one's condition is often correct. I wasn't due for a CT scan for 6 months, but I just didn't feel right and shared this with my oncologist. He immediately ordered a CT which showed the cancer had recurred. I can't imagine having waited 6 months under those circumstances. Thankfully I'm now doing well.
  • jana11
    jana11 Member Posts: 705
    Woe!! What stage were you? I agree with all the rest. That seems ridiculous. YOu don't need PET scans, but some other imaging is important: eiher CT, ultrasound, something!

    Definately get a 2nd opinion.

    Good luck. jana
  • chynabear
    chynabear Member Posts: 481 Member
    jana11 said:

    Woe!! What stage were you? I agree with all the rest. That seems ridiculous. YOu don't need PET scans, but some other imaging is important: eiher CT, ultrasound, something!

    Definately get a 2nd opinion.

    Good luck. jana

    Personally, I went through treatment in Texas because of convenience and family to help me with my daughter and I am now with an Oncologist in Colorado and they are very similar in the way they want things done.

    I was Stage III Colon cancer with One affected Node. By both doctors, I am to be seen and screened with both blood work and a PET/CT every three months and a colonoscopy every year for the first three years, at least. If everything checks out fine, I may reduce my colonoscopy's to every 3 years or so. I'm not sure if the Onc is going to reduce the # of PET/CT's or not.

    I had an interesting discussion with the Tech performinng the PET/CT (btw, it is a combined scan) and their opinion is that the results of the scan far outweigh the risk of being exposed to that small amount of radiation. That the PET/CT is the highest form of technology that is currently available to scan for cancer.

    It's interesting and often frusterating when it comes to all of the differenting opinions. It's hard to figure out what is right and what is wrong.

    Good luck,

    Patricia