What tests are required in the first year after the cancer diagnosis?

bea-mil
bea-mil Member Posts: 108
edited March 2014 in Uterine/Endometrial Cancer #1
Yesterday I saw my radiologist-oncologist. Some of you who read my posts already know that I had a big dilemma about radiation and finally I said no to radiation. My radiologist was very nice and not too “pushy” at all. He simply explained that right now it is easier to deal with microscopic (if any left I still have in me) cancerous cells than later when they will form a tumour visible on CT. I agree, but since the radiation doesn’t extend the life span, I have decided to deal with these cells natural way.
So what now?
-There is no Pap smear test for me for a year (the results won’t be conclusive earlier)
-There is no blood test for me - CA125 or HE4 (they don’t do that, inconclusive again)
-My check-ups with the radiologist will be every 6 months and with my gynaecologist-oncologist in between mainly for the observation.
-If I have a pain or something I will have to go to my family doctor, and I shouldn’t worry about the pain, “everyone has a pain, he has a pain too” – these are his words, and he doesn’t thing that my pain is related to the cancer.
So much for free Canadian medical care or maybe he is right about this inconclusiveness. I don’t really know. Can someone please from the other side of the border tell me what to think about blood tests (or other)4 months after the surgery?
I will ask my family doctor for these blood tests, maybe he will request them for me.
Bea

Comments

  • jazzy1
    jazzy1 Member Posts: 1,379
    #2
    Bea-Mil
    What your doc told you about why to have radiation is what mine told me as well. I opted to go the radiation route as didn't know about alternative types to counter.

    My follow-ups after my last treatment July '09 are every 3 months blood work (he can follow my CA 125 as it shows progression on betterside with treatments over time...great indicator) and CT scan. After one scan I convinced him to do a scan every 6 months as read about all the radiation from the scans...he agreed. Now I've read even with CT some minute things won't show up...then what? So we then go to the blood work side to follow. Some here mention they can't follow the CA 125 as not accurate for them.

    You know I've had a pain in my hip (not real bad but a new pain), and when spoke to oncol he said lets see how you do for the next 3 months. Well before I had the CT I called his office thinking I should do PET or MRI. His nurse told me he thinks I need to go to my PC now. Telling me not his area so go elsewhere.

    I give you high marks for not doing radiation. I think I'd still do radiation even after some of the side affects, as figure I'd do my alternatives on the side too. I'm big into good eating, vitamins and exercise and yoga (mind exercies) so thinking they can help but also go with Western meds.

    Best to you!
    Jan
  • bea-mil
    bea-mil Member Posts: 108
    #3
    jazzy1 said:

    Bea-Mil
    What your doc told you about why to have radiation is what mine told me as well. I opted to go the radiation route as didn't know about alternative types to counter.

    My follow-ups after my last treatment July '09 are every 3 months blood work (he can follow my CA 125 as it shows progression on betterside with treatments over time...great indicator) and CT scan. After one scan I convinced him to do a scan every 6 months as read about all the radiation from the scans...he agreed. Now I've read even with CT some minute things won't show up...then what? So we then go to the blood work side to follow. Some here mention they can't follow the CA 125 as not accurate for them.

    You know I've had a pain in my hip (not real bad but a new pain), and when spoke to oncol he said lets see how you do for the next 3 months. Well before I had the CT I called his office thinking I should do PET or MRI. His nurse told me he thinks I need to go to my PC now. Telling me not his area so go elsewhere.

    I give you high marks for not doing radiation. I think I'd still do radiation even after some of the side affects, as figure I'd do my alternatives on the side too. I'm big into good eating, vitamins and exercise and yoga (mind exercies) so thinking they can help but also go with Western meds.

    Best to you!
    Jan

    Thank you Jan
    Thank you Jan, you are helpful and encouraging like always.
    Bea
  • pixelprincess
    pixelprincess Member Posts: 2
    #4
    What tests are required in the first year after the cancer
    Bea: Not sure what KIND of cancer you had. I had been diagnosed in 2007 with Stage 4 Endometrial cancer and I was in remission for 2 years, and it came back in March, but the people in my gyno-oncol. group just had me wait until my regularly-scheduled 3-month appt at the end of May.

    I had originally had 6 cycles of chemo with 2 different drugs (Paclitaxel and Carboplatin). I would get full-body CT scans - from neck to pelvis (as my insurance here in the U.S. will not approve a combo PET/CT scan even though it is a lot more detailed than a regular CT scan). Standard procedure dictates it should be done every 6 months for the first 2 years. My doc was satisfied with my CA-125 blood protein markers for the 2 years he was checking it (which I was getting these CA-125 tests done every 3 months just before I saw the doc for my exams). And, because he was satisfied, he cut down on the amount of CT scans - which, in a way, is a good thing, because these scans give off TONS of radiation. Even mammograms, which are supposed to be used for PREVENTING breast cancer, gives off the equivalent of about 1,000 chest X-rays worth of radiation - and radiation CAUSES cancer - so go figure how it is recommended and even shoved down our throats to get yearly mammograms - and the exposure to the radiation of the machine can CAUSE cancer.

    Anyway... There are no pills or other things for my type of cancer. Unlike breast cancer patients that are usually given 5-years of Tamoxifen, Herceptin, or Avastin or other drug to keep it from coming back.

    I want to know more about the effects of radiation therapy on the body/pelvic area, because all the docs keep trying to push radiation on patients as if it is no big deal - but it IS a big deal! So many people that have had it done do NOT want to talk about it and I need to know more about it before I decide to do it or not as a last-resort to trying to control my Endometrial cancer that is not only back in the pelvic floor, but the Omentum as well. From what I have been told from my home care nurse and massage therapist - both who have and do treat cancer patients - those that have had radiation - most say they wish they never had it. But, after talking to my doc yesterday - it seems like I am not getting too much of a choice, as he feels my chemo (using the same chemicals as I was getting the first time around that put me into remission) will probably not shrink the tumors enough. And, honestly, there is NO CURE (yet) - it is only "NO EVIDENCE DETECTED" (aka. N.E.D.) that today's tests and fancy equipment cannot pick up on the super tiny cells that are still in the body - but that does not mean we have no more cancer cells.

    They are still working on finding and getting approvals for a test that can detect Ovarian/Endometrial cancer at an earlier stage, but right now the only thing FDA approved in the U.S.A. is the CA-125 test and it is really only to help be conclusive AFTER you already have cancer. These approvals to get into the mainstream market take 10-20 years. And, yes, there are some places in the world that do intense Vitamin C IV treatments that were touted to CURE cancer, and if that is totally true, I could not afford to move or stay in another state for a long time to get the treatments. No insurance company will pay for it and there is very little funding (which is usually private) to promote this sort of natural cure, because the government and the pharmaceutical companies cannot make enough money from it. Sad but true.

    I recommend a book that our chiropractor uses to teach his patients about nutrition. It is called, "Body by God" by Dr. Ben Lerner. So many chemicals in our food here in the U.S. that it definitely causes many illnesses and cancer - and for some reason, our country allows genetically modified foods (cattle and fowl, too) and other deadly chemicals in foods - anything pre-packaged and things like McDonalds and other fast food - because it allows companies to make cheap food for big profit.

    I wish everybody the best in the fight for life.
  • MoeKay
    MoeKay Member Posts: 493 Member
    #5
    pixelprincess said:

    What tests are required in the first year after the cancer
    Bea: Not sure what KIND of cancer you had. I had been diagnosed in 2007 with Stage 4 Endometrial cancer and I was in remission for 2 years, and it came back in March, but the people in my gyno-oncol. group just had me wait until my regularly-scheduled 3-month appt at the end of May.

    I had originally had 6 cycles of chemo with 2 different drugs (Paclitaxel and Carboplatin). I would get full-body CT scans - from neck to pelvis (as my insurance here in the U.S. will not approve a combo PET/CT scan even though it is a lot more detailed than a regular CT scan). Standard procedure dictates it should be done every 6 months for the first 2 years. My doc was satisfied with my CA-125 blood protein markers for the 2 years he was checking it (which I was getting these CA-125 tests done every 3 months just before I saw the doc for my exams). And, because he was satisfied, he cut down on the amount of CT scans - which, in a way, is a good thing, because these scans give off TONS of radiation. Even mammograms, which are supposed to be used for PREVENTING breast cancer, gives off the equivalent of about 1,000 chest X-rays worth of radiation - and radiation CAUSES cancer - so go figure how it is recommended and even shoved down our throats to get yearly mammograms - and the exposure to the radiation of the machine can CAUSE cancer.

    Anyway... There are no pills or other things for my type of cancer. Unlike breast cancer patients that are usually given 5-years of Tamoxifen, Herceptin, or Avastin or other drug to keep it from coming back.

    I want to know more about the effects of radiation therapy on the body/pelvic area, because all the docs keep trying to push radiation on patients as if it is no big deal - but it IS a big deal! So many people that have had it done do NOT want to talk about it and I need to know more about it before I decide to do it or not as a last-resort to trying to control my Endometrial cancer that is not only back in the pelvic floor, but the Omentum as well. From what I have been told from my home care nurse and massage therapist - both who have and do treat cancer patients - those that have had radiation - most say they wish they never had it. But, after talking to my doc yesterday - it seems like I am not getting too much of a choice, as he feels my chemo (using the same chemicals as I was getting the first time around that put me into remission) will probably not shrink the tumors enough. And, honestly, there is NO CURE (yet) - it is only "NO EVIDENCE DETECTED" (aka. N.E.D.) that today's tests and fancy equipment cannot pick up on the super tiny cells that are still in the body - but that does not mean we have no more cancer cells.

    They are still working on finding and getting approvals for a test that can detect Ovarian/Endometrial cancer at an earlier stage, but right now the only thing FDA approved in the U.S.A. is the CA-125 test and it is really only to help be conclusive AFTER you already have cancer. These approvals to get into the mainstream market take 10-20 years. And, yes, there are some places in the world that do intense Vitamin C IV treatments that were touted to CURE cancer, and if that is totally true, I could not afford to move or stay in another state for a long time to get the treatments. No insurance company will pay for it and there is very little funding (which is usually private) to promote this sort of natural cure, because the government and the pharmaceutical companies cannot make enough money from it. Sad but true.

    I recommend a book that our chiropractor uses to teach his patients about nutrition. It is called, "Body by God" by Dr. Ben Lerner. So many chemicals in our food here in the U.S. that it definitely causes many illnesses and cancer - and for some reason, our country allows genetically modified foods (cattle and fowl, too) and other deadly chemicals in foods - anything pre-packaged and things like McDonalds and other fast food - because it allows companies to make cheap food for big profit.

    I wish everybody the best in the fight for life.

    I have never regretted for a
    I have never regretted for a minute having had both internal and external radiation for my endometrial cancer, which was diagnosed in 1999. Given my significant risk factors for recurrence, I’m not sure that I could have successfully been treated had I opted to forgo radiation and wait to have radiation if/when I recurred. Here are reports (with links) discussing two studies published years after I finished treatment. One found a significant survival benefit for certain subsets of high risk cases of EC, while the other found a “trend towards overall survival benefit,” and explained the shortcomings of the study which made it difficult to detect a survival benefit.

    http://www.cancer.gov/cancertopics/treatment/endometrial/adjuvantradiation

    From the NCI report on the Gaffney et al. study:

    "Results of a retrospective analysis of more than 21,000 women with early-stage endometrial cancer demonstrate a significant survival benefit with adjuvant radiation therapy (RT) in subsets of women with high-risk disease."

    You should keep in mind that since the Gaffney study, the staging for EC has changed. The study refers to stage 1C, which no longer exists. What was the former stage 1C, is now stage 1B under the new staging system.

    http://www.oncolink.org/library/article.cfm?c=2&s=25&id=763&p=1

    From the Oncolink report on Keys et al. study:

    "This is the only large, randomized study of post-operative radiation therapy (PORT) vs. no further treatment (NFT) in a population undergoing complete surgical staging. Overall, PORT reduced loco-regional recurrence by 58%, primarily by greatly reducing the incidence of vaginal recurrences. The absolute risk reduction in the high intermediate risk group was 19% vs. 4% in the low intermediate risk group. There was a trend towards overall survival benefit in the PORT arm. However, because of the low overall recurrence rate and the impact of intercurrent disease in this elderly population this study was underpowered to detect a survival benefit. Based on unplanned sub-group analysis, the authors recommend PORT only for those stage I patients who fit their criteria for high intermediate risk."

    Maureen
  • bea-mil
    bea-mil Member Posts: 108
    #6
    MoeKay said:

    I have never regretted for a
    I have never regretted for a minute having had both internal and external radiation for my endometrial cancer, which was diagnosed in 1999. Given my significant risk factors for recurrence, I’m not sure that I could have successfully been treated had I opted to forgo radiation and wait to have radiation if/when I recurred. Here are reports (with links) discussing two studies published years after I finished treatment. One found a significant survival benefit for certain subsets of high risk cases of EC, while the other found a “trend towards overall survival benefit,” and explained the shortcomings of the study which made it difficult to detect a survival benefit.

    http://www.cancer.gov/cancertopics/treatment/endometrial/adjuvantradiation

    From the NCI report on the Gaffney et al. study:

    "Results of a retrospective analysis of more than 21,000 women with early-stage endometrial cancer demonstrate a significant survival benefit with adjuvant radiation therapy (RT) in subsets of women with high-risk disease."

    You should keep in mind that since the Gaffney study, the staging for EC has changed. The study refers to stage 1C, which no longer exists. What was the former stage 1C, is now stage 1B under the new staging system.

    http://www.oncolink.org/library/article.cfm?c=2&s=25&id=763&p=1

    From the Oncolink report on Keys et al. study:

    "This is the only large, randomized study of post-operative radiation therapy (PORT) vs. no further treatment (NFT) in a population undergoing complete surgical staging. Overall, PORT reduced loco-regional recurrence by 58%, primarily by greatly reducing the incidence of vaginal recurrences. The absolute risk reduction in the high intermediate risk group was 19% vs. 4% in the low intermediate risk group. There was a trend towards overall survival benefit in the PORT arm. However, because of the low overall recurrence rate and the impact of intercurrent disease in this elderly population this study was underpowered to detect a survival benefit. Based on unplanned sub-group analysis, the authors recommend PORT only for those stage I patients who fit their criteria for high intermediate risk."

    Maureen

    Hi Maureen
    There are many trials and none of them can support my decision one way or another.
    Here is a web site:
    http://news.cancerconnect.com/radiation-therapy-for-uterine-cancer/
    And a citation from it:
    “The cancer recurrence rates were 4% for patients treated with surgery and radiation and 14% for patients treated with surgery alone. Survival rates, however, were 81% for treatment with surgery and adjuvant radiation therapy and 85% for surgery alone. Although patients treated with surgery and radiation experienced fewer cancer recurrences, patients treated with surgery alone survived longer. This is because there were more side effects in women treated with radiation therapy. The doctors concluded that postoperative radiation therapy reduced local recurrences of cancer following surgery for stage I uterine cancer, but did not improve survival.”
    Believe it or not my radiologist-oncologist agreed with this statement.
    ...anyway I don’t know how they run these trials, have they implemented some alternative treatments for patients with surgery alone? I don’t know. In my situation I’m not opting for surgery alone versus surgery plus radiation. My option is surgery plus alternative treatments, few of them actually, supplementation, diet change, mental and emotional support (meditation, yoga etc.), plus physical activity. I know that there is no medical evidence that these will improve my health simply because there are not enough cancer patients who will choose that way. ..And even if they turn towards the alternative medicine they usually do that at the end of the road when all conventional treatments stopped working.
    For me there is not enough evidence that will prove that radiation or chemo works perfectly, I see the contrary.
    There are more and more people (even doctors) who are leaning towards alternative or integrative medicine. I see many girls on this forum who have implemented alternative treatments along with their chemo and radiation and they are doing fine. There always will be a question what if...? Too bad we cannot chose one path and go back to take another one in case the first one won’t work.
    I’m very happy for you that your option came up working for you that well. Too bad you are among thousands of others who ended up having more radiation and chemo because one wasn’t enough.
    My immune system is not that strong at this point to handle all these toxins.
    I hope that someone will find a cure for this terrible illness soon, so we don’t have to have this dilemma: alternative or conventional way?
    All the best
  • kkstef
    kkstef Member Posts: 688 Member
    #7
    Post treatment testing
    Bea

    Follow up after treatment is very dependent on the type of cancer one has, the stage AND the gyn oncologist's beliefs. I had a CT scan 3 months after chemo (I had radiation prior to chemo). I do not have routine CA-125's as it was not a marker for me (my CA-125 was low prior to surgery and remained low afterwards). My gyn-onc does not believe in "routine" scans due to risk if mega doses of radiation so will only do one if I have symptoms or there is a concern on exam. I had a pelvic and pap smear every 3 months for 2 years and have now "graduated" to every 4 months. The vaginal cuff is a frequent site of recurrance thus, the pap smears. Also, I have an annual chest x-ray, again a frequent site of recurrance. He does not order any other lab work.

    I do not have any follow up by a radiologist as I was NOT happy with him and said I would NOT go back. My gyn-onc said he would do the follow-up.

    It seems all drs. have their own philosphy about follow-up. Check out the American Cancer Society's recommendations for follow-up for your type/stage of cancer.

    Best wishes and good health to you!

    Karen
  • maggie_wilson
    maggie_wilson Member Posts: 596
    #8
    what to expect 1st year after diagnosis

    hi bea,

    from reading these posts, you can see how individual it all really is. i had my first post surgery ct scan 6 months after i finished chemo. i have ca 125s every 3 months or so. my chemo doctor looks at trends rather than absolute numbers. my ca 125 numbers are all within normal range, however, since the last 2 showed a slight increase, i got the ct scan. all looked good except for one slightly enlarged periaortic node, which no one knows if cancerous or not--hence taking a wait and see approach. my chemo doctor said i could take 6 months between ca 125s if i wanted, and as i've said elsewhere , i may well do that if i feel as good at the end of august as i do now. what's the bloody hurry? is my question. i really have the impression that it's up to me, with the doctor's advising and i making the decisions. i chose not to have radiation, and so far, i do not regret it. i, like so many on this site, had a huge radical hysterectomy, where everything that wasn't nailed down was removed, including a few things that were nailed down. it's been over a year since the surgery, and in truth i'm still recovering from that. the chemo was quite unpleasant, but doable, and i managed ok.

    so, it's up to you to ask for what you want or feel you need, and hopefully that's what you'll get. i have to say, fortunately, that's been my experience here in northern california.

    hope this helps.

    sisterhood,
    maggie

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