Concerned when they tell me no routine scans will be done

Options
anetnut
anetnut Member Posts: 3
in Breast Cancer #1
First, does anybody have this feeling when treatment is done of it not seeming right that they aren't actively doing anything anymore? Much as I am thrilled to have just finished radiation and have finished treatment that started in June 2010, I get this odd feeling that we are not doing anything to fight it anymore which I don't like. Even though I know the Tamoxifen fights it. I guess it is just because I am not actively running to my appointments all the time now.

My onco has told me that they have found that routine scans do not help odds, so they go off of clinical visits, lab work and symptoms that I might have. This bothers me a LOT. By the time symptoms appear, it will be progressed. Seems to me like it would make more sense to catch it on a scan when it could be one or two lesions in one spot, that could possibly be treated with rads instead of many lesions involving many organs and bones. I do get one more PET scan once the radiation effects are gone. Someone I know, her mother got treated in the city close to here and she just finished her 5 year survival anniversary. All those years, she had scans every 6 months. If my onco, which I love won't do the scan and I contact this woman's onco who will, I may have to change docs.

What was your routine for checkups after completing treatment? What did they do and how often did you go?

Comments

  • Rague
    Rague Member Posts: 3,653 Member
    #2
    Options
    We are all different as are
    We are all different as are our Drs.

    I've had 2 CT and 1 bone scan since surgery (Oct 21, 2009). My Rads Dr wanted a new CT before starting Rads so it was done the last day of Chemo so i could start Rads in 1 week. The other 2 were done for specific reasons, ordered by my PA. I was having a lot of pain in back after burns healed and she wanted to be sure that it was just the arthritis in my spine cusing it - it is. Then in late Oct I got servere pressure and pain around and behind right eye (pain meds did nothing - the only thing that helped was Dex.) so it was to the eye Dr and then another CT to be sure - never figured out why (and it quit as abruptly as it started) - the consence of opinions is that for some unknown reason a nerve got 'irritated' and the Dex allowed it to 'calm down'.

    I did have a mammo requested by surgeon a year out of DX and he doesn't want another til next Aug. Other than that - no scheduled scans - blood work yes). Remember that each scan subjects us to more radiation.
  • Marcia527
    Marcia527 Member Posts: 2,729
    #3
    Options
    First it was every 3 months,
    First it was every 3 months, then 6 months and then once a year. No scans other than mammograms once a year. Two oncs did blood tests and one didn't. We moved a couple times since treatment. I felt this was an odd way to follow up cause my cancer didn't show on mammogram or ultrasound. I was diagnosed in 2003. Stage 3a.

    P.S. I forgot I have had a bone scan and brain scan but only when I had problems. They were not routine.
  • jessiesmom1
    jessiesmom1 Member Posts: 915 Member
    #4
    Options
    When Treatment is Over
    It has been 14 months since my mastectomy and 7 months since my last chemo infusion. I am not receiving any follow-up drugs like Herceptin or Tamoxifen since I am triple negative. I can very much understand when you say you feel like you are not actively fighting your breast cancer. When we are running to the doctor for scans, bloodwork, procedures, surgeries, etc. it is easy to feel like we are actually doing something to rid ourselves of this illness. Now somehow we just have to have faith that all of that worked. It is not easy.

    I went to my oncologist for a check-up this past Friday and came armed with a printed list of questions for him. One was about what scans, tests, etc. will be done now. He said that he will have bloodwork done prior to each visit. Those visits will be 3 months apart for the 1st year. He is primarily looking for liver function indicators. I asked him if I would notice any problems or if the blood test was likely to see a problem first. He said that I would probably notice first - abdominal pain, fatigue, skin color change. I should get a yearly mammogram on my remaining breast. Other than that, he does not recommend any MRI, PET/CT scans, etc. UNLESS there is a symptom or other problem. He also said that he does not routinely do tumor marker tests as they are not particularly reliable - too many false negatives AND false positives.

    Doctors have as many opinions on follow up treatment as they do on how to treat the disease initially. If you are seriously concerned about your oncologist's treatment plan then maybe you should get a 2nd opinion. Your insurance company may or may not pay for this but perhaps your peace of mind is worth it. Good luck.
  • pattimc
    pattimc Member Posts: 431
    #5
    Options
    jessiesmom1 said:

    When Treatment is Over
    It has been 14 months since my mastectomy and 7 months since my last chemo infusion. I am not receiving any follow-up drugs like Herceptin or Tamoxifen since I am triple negative. I can very much understand when you say you feel like you are not actively fighting your breast cancer. When we are running to the doctor for scans, bloodwork, procedures, surgeries, etc. it is easy to feel like we are actually doing something to rid ourselves of this illness. Now somehow we just have to have faith that all of that worked. It is not easy.

    I went to my oncologist for a check-up this past Friday and came armed with a printed list of questions for him. One was about what scans, tests, etc. will be done now. He said that he will have bloodwork done prior to each visit. Those visits will be 3 months apart for the 1st year. He is primarily looking for liver function indicators. I asked him if I would notice any problems or if the blood test was likely to see a problem first. He said that I would probably notice first - abdominal pain, fatigue, skin color change. I should get a yearly mammogram on my remaining breast. Other than that, he does not recommend any MRI, PET/CT scans, etc. UNLESS there is a symptom or other problem. He also said that he does not routinely do tumor marker tests as they are not particularly reliable - too many false negatives AND false positives.

    Doctors have as many opinions on follow up treatment as they do on how to treat the disease initially. If you are seriously concerned about your oncologist's treatment plan then maybe you should get a 2nd opinion. Your insurance company may or may not pay for this but perhaps your peace of mind is worth it. Good luck.

    Jessiesmom
    Your doc sounds exactly like my doc! I see the onco twice a year (bloodwork before) and see the radiologist twice a year. So I'm being seen by one or the other every three months. Fine with me! Also does no tumor markers because of all the false negatives.

    I've had two mammos 6 months apart both clear..go again in June then I'll go annually if all is clear.

    I feel very secure with my treatment course and I know that I can call anytime something doesn't feel right.

    BTW, I've had lumpectomy, chemo, radiation and now on tamoxifen. I've been out of treatments since December 2010.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #6
    Options
    I go every 3 mths...since radiation was completed
    It is 3 yrs since surgery and go to 2 oncologist every 3mths and have blood work and Mammo each time. (also bone densisty etc) Since I am almost at 3 yr mark I am not allowed to go 4mths instead and no mammo prior to this visit. (I get both breasts done everyother time and then just the BC side alternating)

    I am on tamoxfin and have Internal *not sure of name ultrasound and each time so far I have had a D & C...
  • Boppy_of_6
    Boppy_of_6 Member Posts: 1,138
    #7
    Options
    disneyfan2008 said:

    I go every 3 mths...since radiation was completed
    It is 3 yrs since surgery and go to 2 oncologist every 3mths and have blood work and Mammo each time. (also bone densisty etc) Since I am almost at 3 yr mark I am not allowed to go 4mths instead and no mammo prior to this visit. (I get both breasts done everyother time and then just the BC side alternating)

    I am on tamoxfin and have Internal *not sure of name ultrasound and each time so far I have had a D & C...

    No scans here
    I was also told by my Onc. that there would be no PET scans or other routine scans. I just had my 1st mammo since tx. was over, it was good!! I am 8 1/2 months out of chemo and 7 mos. out of rads. I have seen Onc. every 3 months this first year and will continue every 3 months for 1 more year then go every 6 months. labs before each visit but that is it. God Bless
    (((hugs))) Janice
  • camul
    camul Member Posts: 2,537
    #8
    Options
    no scans
    1st year out, blood work every 3 months, mamogram at 6 months, then yearly. Scans only when needed. Then blood work every 6 months. Had a pet scan and MRI in Nov of 2009. Completely clear. Complete blood work April 2010. Pain in ribs and hips Aug-Sep 2010. Had mets to the bone.

    He does not believe in tumor markers because of all the false negatives and positives. Says that the best test is how I am feeling! He has never once dismissed any concern and has no problem ordering the scans when something has not been right!

    I may have even gone in sooner, except that after having the scan in November, I felt that the pain worsening in my hips must be arthritis because the scan was clear! Had I followed how I actually felt, I would have gone back in June when my hips were starting to cause me enough pain that it was holding back my exercising!!
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    #9
    Options
    camul said:

    no scans
    1st year out, blood work every 3 months, mamogram at 6 months, then yearly. Scans only when needed. Then blood work every 6 months. Had a pet scan and MRI in Nov of 2009. Completely clear. Complete blood work April 2010. Pain in ribs and hips Aug-Sep 2010. Had mets to the bone.

    He does not believe in tumor markers because of all the false negatives and positives. Says that the best test is how I am feeling! He has never once dismissed any concern and has no problem ordering the scans when something has not been right!

    I may have even gone in sooner, except that after having the scan in November, I felt that the pain worsening in my hips must be arthritis because the scan was clear! Had I followed how I actually felt, I would have gone back in June when my hips were starting to cause me enough pain that it was holding back my exercising!!

    TESTS
    I am so with Rague when it comes to radiation and all those scans.Read about it and you will understand why??? With my cancer diagnosis I didn't need scans.I had Stage 0 DCIS and 1/2cm tumor.Very very small. No chemo or radiation but take Tamoxifin.Which I looked
    at the bottle for a few weeks before taking it.Those doggone side effects worried me.

    BUT I did go to ER last year(6 mo after dx)I had a bowel obstruction.Nothing to do with cancer.I kept telling them no CT scan.I've only had one and didn't like it.They insisted.I mean no choice for me.They were going to do it.Like it MUST be done. I didn't read up on scans till this year when a urologist told me I had kidney stones from the scan the year before.OMG my gastro doctor never told me.I was in shock to find out 1 year later I had stones.So this urologist tested my bladder(no cancer) then said he wanted to do another CT scan. I went back to him and said NO.He said YES.So needless to say I fired him and the gastro doctor in 1 year.Just last week I went to another urologist.I like him.He said I don't feel you need another CT scan either but get a KUB.I read on those and the amount of radiation is minimal.I ok'd that but next time it will have to be a ultrasound or a MRI.I am done with radiation tests for awhile.

    It would make you sick if you knew how much radiation we get from a CT scan.It is said they are bad for people but what about cancer patients.We can get cancer from radiation but these tests are ordered??? That is what made me mad.I have the cancer gene so why make it more worrisome for me.In fact I have been stewing over this for a month and finally had to go on with my life.It was driving me crazy.

    Lynn Smith
  • NJMom10
    NJMom10 Member Posts: 176
    #10
    Options
    This is exactly how I felt today
    I can't believe I read this post today. I just came from the onc and he said the same thing...no scans...we don't want to expose you to more radiation than necessary. He will see me every 3 months this year. I am also going to breast surgeon in 6 months so I will be getting mamograms and blood work but that's it. I was really worried about this, feeling like they weren't checking enough. But it sounds like this is pretty normal. Thanks so much for posting and all you ladies for answering. I'm not sure where I'd be without this site. Actually I know where I would be...a lot more worried!!!
  • Jennifer1961
    Jennifer1961 Member Posts: 137
    #11
    Options
    My onc. doesn't recommned
    My onc. doesn't recommned scans. From what I understand studies show that the time in which a scan would pick something up and the time you notice symptoms is not much. Apparently from what I have read finding mets. early doesn't help much. Whether it's treated when it's picked up by a scan or when you notice symptoms and get diagnosed the survivial rate and time is pretty much the same. Doesn't make much sense to me, but what do I know. I obviously if you completely ignore symptoms and don't get treated that's another story. Also scans do expose you to radiation which is not good. I guess they weigh the potential benefits to potential harm. Anyhow, I got a scan after treatment just to make myself feel better, but I probably won't have on again any time soon unless I develop symptoms.
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
    #12
    Options
    Jennifer1961 said:

    My onc. doesn't recommned
    My onc. doesn't recommned scans. From what I understand studies show that the time in which a scan would pick something up and the time you notice symptoms is not much. Apparently from what I have read finding mets. early doesn't help much. Whether it's treated when it's picked up by a scan or when you notice symptoms and get diagnosed the survivial rate and time is pretty much the same. Doesn't make much sense to me, but what do I know. I obviously if you completely ignore symptoms and don't get treated that's another story. Also scans do expose you to radiation which is not good. I guess they weigh the potential benefits to potential harm. Anyhow, I got a scan after treatment just to make myself feel better, but I probably won't have on again any time soon unless I develop symptoms.

    I don't have routine scans
    I don't have routine scans except a chest CT ONLY because when I had my original scans, bone and CT they saw lymph nodes that they believe warranted a yearly watch.
    I've never had a Pet Scan and only reason I'm having another bone scan tomorrow is because of back pain.

    My doctor says we'll just do tests if I have any complaints. I also of course have a yearly mammo.

    Hope this helps.
    Hugs

Discussion Boards