post treatment questions

DiO · September 2004

Like several of you who have posted lately I recently finished bc treatment. Diagnosis 11/03, lumpectomy 12/03, 2cm tumor, 1 of 6 nodes positive, er/pr pos, Her2 neg. I had 4 AC, 4 taxol and 33 rads ending 7/1/04. I'm now on Arimidex and have gone to 6 mo recall for surgeon and rad onc, and 3 mo recall for med onc. What makes me nervous at this point is that my docs don't believe in tumor marker tests--too unreliable, and don't do any scans or CTs unless symptoms present as they feel by the time anything shows on the scans symptoms would be present and so they're saving anxiety waiting for test results as well as expense by not ordering them in the first place. They also don't do breast MRI unless there's a higher risk than I have (guess previous bc not picked up by mammogram isn't high enough risk!). My question for you ladies is, those of you who were diagnosed with mets several years after original treatment, what symptoms were present and how were the mets first discovered? It seems as though if we're relying on symptoms as a predictor I should have a better idea of what symptoms are meaningful in order to avoid being a total hypchondriac. At present I'm feeling really good, and hope and pray I stay that way!! I wish the same for all of you! Thanks for any input you have, Di

Idalia · September 2004

Have you considered a second opinion from another oncologist? I can understand being careful about exposing you to more radiation - ct scans put out as much rad as 100 mammograms! - but not even blood tests? Once they establish your baseline, they can at least tell if you are normal for you! It sounds like your doctor is more concerned about saving $ than treating you - there is a lot of pressure on doctors from insurance companies to limit their spending. If they insist they are trying to 'save you anxiety' let them know it is too late! You are entitled to excellent medical care, not just reassurances. I was diagnosed with stage II breast cancer (no nodes involved) last year and was told I was cancer-free after passing all my bloodwork and annual mammogram. A couple of months later, I developed a backache that wouldn't go away. It took three months to diagnose extensive metastasized breast cancer throughout my spine and pelvis. They could have found it months earlier if they had popped for an MRI or a bone scan! Be your own health advocate. Frankly, I think hypochondriacs live longer! Good luck.

DeeNY711 · September 2004

None of the doctors to whom I go orders tumor marker tests either. Interpretation of what the results actually mean is still in the discussion phase. Nor do they order CT or other scans post-treatment on asymptomatic patients. I was unsettled by this at first, but believe me, the idea grows on you quickly. That is not to say that no labs are done... I have a full battery of lab tests done prior to each oncology follow-up visit. Just not tumor markers. It is not a matter of expense. I had the exact same course of treatment as you except for having taxotere rather than taxol, and am also on Arimidex now. Hope this helps a little.
Love,
Denise

jhope · September 2004

I finished 6 months of chemo (every other week) and rads in dec 2003, have had 2 3 month check up with cat scans, and now just go (well as soon as I make appt) for third 3 months but just battery of lab test. My oncologist is excellent and he does not rely or do tumor markers either. I have asked, he is very much into research, and tumor markers are just not reliable.

I did however have a bad experience with docs not listening, you are going through enough already.... talk to your doc about how you feel. You deserve to feel like your getting good care, unfortunetly some of the anxiety your feeling might be perfectly natural worry about your ca metatising. Stay tough, and god bless, Julia

bunnie · September 2004

If your not comfortale with doc info the yes instist you want the test done it is your body. yor choice. My doc is wonderful. he listens too me he tells me all the choices are mine iam the only that can make decisions about my body. Becase unfrotantly at this time the only way iam going to keep the cancer under control is to stay on chemo until something new developes or i say enogh. Hope you get your answers that you need to ease your mind please keep us posted. Bunnie

SweetSue · September 2004

My oncologist doesn't believe in all that testing. However, Since your mammogram did not show cancer, I would think MRI's would be ordered in the future. QUite often mammograms and ultrasounds don't detect lobular bc....unsure about ductal.
Sue

inkblot · September 2004

Hi DiO:

What's "routine" follow up in one part of the country may be quite uncommon in another part of it, so it just depends upon where you live and what's considered "standard" follow up for that region.

My schedule went like this: I saw every doc on my team (onc., surgeon & rad. onc.) every 3 months for the first two years post treatment. I had mammo's every 6 months, with each doc receiving the report. I took the films to the surgeon as he wanted to see the actual films.

The oncologist did blood work at each visit which also included a complete physical exam. This consisted of blood chemistry, blood counts and CA27.29 (tumor marker test). Onc. and I discussed the tumor markers in detail at the outset. They are not consistently reliable but a tool docs are trying to learn to better utilize and determine any true usefulness of the tests. I'm ok with that since it doesn't involve any extra visits or extra blood being drawn. She said that if my numbers began to suddenly rise, then she would begin to look for a reason, beginning with a bone scan. Logically, if we have NO physical complaints/symptoms, docs don't really know where to begin to look for anything amiss. Onc. also said that some people "spike" on occasion for no known reason and that some have a met or recurrence with no rise in marker's at all. My research supports her statements completely. I don't place a lot of confidence in the marker tests at this point and wouldn't get too excited if mine rose a bit as other things can effect the numbers aside from cancer.

My rad. onc. does a thorough breast and axilla exam, feels the liver and tummy and checks the ankles, reviews the mammo report and that's about it.

Surgeon does the most intense breast and axilla physical. Reviews the mammo report and looks at the films with me and writes the script for my next mammo.

I was very relieved when I could go to 6 month visits with the docs and begin going yearly for the mammo's! Seems that I was seeing one doc or the other all the time those first two years! ADD to that our regular yearly gyn. visits, our dental cleanings/check ups and in my case, my every 6 month pulmonologist (I have mild asthma) check up and I was going bonker's with doc visits!!! I felt so FREE once those visits stretched to longer periods with the cancer team!

I was happy my onc. didn't prefer routine bone scans, MRI's etc. We'd have been at logger heads about it if she had. I really didn't want the additional toxins of those tests in my system, unless they were necessary due to symptoms or persistently skewed chemistry results.

Your doc probably should be checking your chemistry, as Alkaline Phosphatase and Calcium are two important things which come to mind, to monitor, post cancer.

Over 3 years of check ups, I've had only two things surface, both discovered via the chemistry panel. Neither serious, both resolved. Yet, if I'd not had routine chemistry studies, these two hiccups would never have been discovered, so it should be an important part of our follow ups.

I think it's normal to maybe feel that we'd benefit from routine MRI's, scans, PET's and the like as part of our follow up but those tests are a huge stab in the dark, without specific reason's to have them. Most mets or recurrenes could not be seen on many of those tests until they were large enough to produce some kind of symptoms or before something unusual was seen in the routine labs. It is my personal opinion that unnecessary, routine screenings of this type contribute to making us feel "sick" because we're always going to great lengths to look for "it" not to mention that the dyes and emissions from these tests could actually contribute to us getting "it" again! If we remember that medicine is as much art as science, then we can try to relax more. If, however, your particular doc seems to be lacking for "art" (that special sense of intuition, experience, understanding, a keen eye, etc.) then maybe a consult with a new doc is in order.

My standard is that if I should get a pain that lasts more than a few weeks, find a sore or lumpy area I can't attribute to any injury or strain, see anything unusual on my body that doesn't go away or should find myself newly fatigued day after day, THEN, I'd call the doc and get it checked out and go from there. In the meantime, living happily is the here and now. Not next week, month or year. Right now is all there is and all there will ever be, so it's more important to me, to attend to the business of living without devoting time/anxiety to unnecessary, unwarranted, expensive tests just to make my doctor happy. Makes no sense to me. If those tests make sense as "routine", then why isn't my doctor and every other breathing soul having them too? It seems to me that it's sort of like breaking your leg yet continuing to have xrays for 2 years even though it has healed well with no pain or limp or problem of any kind. If there's an indication for them, yes, by all means have them. If not, why have them, all side effects considered versus what such tests can find when there's no indication of why/where to look. On the flip side, if you know something is not right and your doc discounts it, it's time to go into your best advocacy mode and demand further investigation/tests and/or change docs. Just my thoughts about it.

You're feeling great and that's wonderful, so enjoy your life, take excellent care of your health, maintain your follow up schedule and make sure your doc is doing the routine blood screenings. Beyond that, life is precious and wonderful! Cherish this and stay well.

Love, light and laughter,
Ink

DiO · September 2004

inkblot said:
Hi DiO:

What's "routine" follow up in one part of the country may be quite uncommon in another part of it, so it just depends upon where you live and what's considered "standard" follow up for that region.

My schedule went like this: I saw every doc on my team (onc., surgeon & rad. onc.) every 3 months for the first two years post treatment. I had mammo's every 6 months, with each doc receiving the report. I took the films to the surgeon as he wanted to see the actual films.

The oncologist did blood work at each visit which also included a complete physical exam. This consisted of blood chemistry, blood counts and CA27.29 (tumor marker test). Onc. and I discussed the tumor markers in detail at the outset. They are not consistently reliable but a tool docs are trying to learn to better utilize and determine any true usefulness of the tests. I'm ok with that since it doesn't involve any extra visits or extra blood being drawn. She said that if my numbers began to suddenly rise, then she would begin to look for a reason, beginning with a bone scan. Logically, if we have NO physical complaints/symptoms, docs don't really know where to begin to look for anything amiss. Onc. also said that some people "spike" on occasion for no known reason and that some have a met or recurrence with no rise in marker's at all. My research supports her statements completely. I don't place a lot of confidence in the marker tests at this point and wouldn't get too excited if mine rose a bit as other things can effect the numbers aside from cancer.

My rad. onc. does a thorough breast and axilla exam, feels the liver and tummy and checks the ankles, reviews the mammo report and that's about it.

Surgeon does the most intense breast and axilla physical. Reviews the mammo report and looks at the films with me and writes the script for my next mammo.

I was very relieved when I could go to 6 month visits with the docs and begin going yearly for the mammo's! Seems that I was seeing one doc or the other all the time those first two years! ADD to that our regular yearly gyn. visits, our dental cleanings/check ups and in my case, my every 6 month pulmonologist (I have mild asthma) check up and I was going bonker's with doc visits!!! I felt so FREE once those visits stretched to longer periods with the cancer team!

I was happy my onc. didn't prefer routine bone scans, MRI's etc. We'd have been at logger heads about it if she had. I really didn't want the additional toxins of those tests in my system, unless they were necessary due to symptoms or persistently skewed chemistry results.

Your doc probably should be checking your chemistry, as Alkaline Phosphatase and Calcium are two important things which come to mind, to monitor, post cancer.

Over 3 years of check ups, I've had only two things surface, both discovered via the chemistry panel. Neither serious, both resolved. Yet, if I'd not had routine chemistry studies, these two hiccups would never have been discovered, so it should be an important part of our follow ups.

I think it's normal to maybe feel that we'd benefit from routine MRI's, scans, PET's and the like as part of our follow up but those tests are a huge stab in the dark, without specific reason's to have them. Most mets or recurrenes could not be seen on many of those tests until they were large enough to produce some kind of symptoms or before something unusual was seen in the routine labs. It is my personal opinion that unnecessary, routine screenings of this type contribute to making us feel "sick" because we're always going to great lengths to look for "it" not to mention that the dyes and emissions from these tests could actually contribute to us getting "it" again! If we remember that medicine is as much art as science, then we can try to relax more. If, however, your particular doc seems to be lacking for "art" (that special sense of intuition, experience, understanding, a keen eye, etc.) then maybe a consult with a new doc is in order.

My standard is that if I should get a pain that lasts more than a few weeks, find a sore or lumpy area I can't attribute to any injury or strain, see anything unusual on my body that doesn't go away or should find myself newly fatigued day after day, THEN, I'd call the doc and get it checked out and go from there. In the meantime, living happily is the here and now. Not next week, month or year. Right now is all there is and all there will ever be, so it's more important to me, to attend to the business of living without devoting time/anxiety to unnecessary, unwarranted, expensive tests just to make my doctor happy. Makes no sense to me. If those tests make sense as "routine", then why isn't my doctor and every other breathing soul having them too? It seems to me that it's sort of like breaking your leg yet continuing to have xrays for 2 years even though it has healed well with no pain or limp or problem of any kind. If there's an indication for them, yes, by all means have them. If not, why have them, all side effects considered versus what such tests can find when there's no indication of why/where to look. On the flip side, if you know something is not right and your doc discounts it, it's time to go into your best advocacy mode and demand further investigation/tests and/or change docs. Just my thoughts about it.

You're feeling great and that's wonderful, so enjoy your life, take excellent care of your health, maintain your follow up schedule and make sure your doc is doing the routine blood screenings. Beyond that, life is precious and wonderful! Cherish this and stay well.

Love, light and laughter,
Ink

Thanks, Ink, for your very insightful response. As usual I always find your notes to everyone to be so "on the money" and just what we need to hear. My doc does do regular CBCs and blood chemistry, just not the tumor markers. I'm ok with not doing bone scans, etc, only one that still bothers me is that it seems it would be good to do a breast MRI occasionally along with the mammogram since I have very dense breast tissue and thus the original tumor didn't show on mammogram. Only way we found it was by the nurse in the mammography center's very competent exam. I plan to discuss possible MRI with my primary doc when I go for my pap/pelvic next month.

Keep up the good work--we all appreciate you so much! Di

inkblot · September 2004

DiO said:
Thanks, Ink, for your very insightful response. As usual I always find your notes to everyone to be so "on the money" and just what we need to hear. My doc does do regular CBCs and blood chemistry, just not the tumor markers. I'm ok with not doing bone scans, etc, only one that still bothers me is that it seems it would be good to do a breast MRI occasionally along with the mammogram since I have very dense breast tissue and thus the original tumor didn't show on mammogram. Only way we found it was by the nurse in the mammography center's very competent exam. I plan to discuss possible MRI with my primary doc when I go for my pap/pelvic next month.

Keep up the good work--we all appreciate you so much! Di

Sounds like a great plan DiO! Since your chem and counts, etc. are being done, it sounds like you're gettting good follow up care.

Let us know your doc's thoughts re the MRI's.

Love, light and laughter,
Ink

bhamm · September 2004

inkblot said:
Hi DiO:

What's "routine" follow up in one part of the country may be quite uncommon in another part of it, so it just depends upon where you live and what's considered "standard" follow up for that region.

My schedule went like this: I saw every doc on my team (onc., surgeon & rad. onc.) every 3 months for the first two years post treatment. I had mammo's every 6 months, with each doc receiving the report. I took the films to the surgeon as he wanted to see the actual films.

The oncologist did blood work at each visit which also included a complete physical exam. This consisted of blood chemistry, blood counts and CA27.29 (tumor marker test). Onc. and I discussed the tumor markers in detail at the outset. They are not consistently reliable but a tool docs are trying to learn to better utilize and determine any true usefulness of the tests. I'm ok with that since it doesn't involve any extra visits or extra blood being drawn. She said that if my numbers began to suddenly rise, then she would begin to look for a reason, beginning with a bone scan. Logically, if we have NO physical complaints/symptoms, docs don't really know where to begin to look for anything amiss. Onc. also said that some people "spike" on occasion for no known reason and that some have a met or recurrence with no rise in marker's at all. My research supports her statements completely. I don't place a lot of confidence in the marker tests at this point and wouldn't get too excited if mine rose a bit as other things can effect the numbers aside from cancer.

My rad. onc. does a thorough breast and axilla exam, feels the liver and tummy and checks the ankles, reviews the mammo report and that's about it.

Surgeon does the most intense breast and axilla physical. Reviews the mammo report and looks at the films with me and writes the script for my next mammo.

I was very relieved when I could go to 6 month visits with the docs and begin going yearly for the mammo's! Seems that I was seeing one doc or the other all the time those first two years! ADD to that our regular yearly gyn. visits, our dental cleanings/check ups and in my case, my every 6 month pulmonologist (I have mild asthma) check up and I was going bonker's with doc visits!!! I felt so FREE once those visits stretched to longer periods with the cancer team!

I was happy my onc. didn't prefer routine bone scans, MRI's etc. We'd have been at logger heads about it if she had. I really didn't want the additional toxins of those tests in my system, unless they were necessary due to symptoms or persistently skewed chemistry results.

Your doc probably should be checking your chemistry, as Alkaline Phosphatase and Calcium are two important things which come to mind, to monitor, post cancer.

Over 3 years of check ups, I've had only two things surface, both discovered via the chemistry panel. Neither serious, both resolved. Yet, if I'd not had routine chemistry studies, these two hiccups would never have been discovered, so it should be an important part of our follow ups.

I think it's normal to maybe feel that we'd benefit from routine MRI's, scans, PET's and the like as part of our follow up but those tests are a huge stab in the dark, without specific reason's to have them. Most mets or recurrenes could not be seen on many of those tests until they were large enough to produce some kind of symptoms or before something unusual was seen in the routine labs. It is my personal opinion that unnecessary, routine screenings of this type contribute to making us feel "sick" because we're always going to great lengths to look for "it" not to mention that the dyes and emissions from these tests could actually contribute to us getting "it" again! If we remember that medicine is as much art as science, then we can try to relax more. If, however, your particular doc seems to be lacking for "art" (that special sense of intuition, experience, understanding, a keen eye, etc.) then maybe a consult with a new doc is in order.

My standard is that if I should get a pain that lasts more than a few weeks, find a sore or lumpy area I can't attribute to any injury or strain, see anything unusual on my body that doesn't go away or should find myself newly fatigued day after day, THEN, I'd call the doc and get it checked out and go from there. In the meantime, living happily is the here and now. Not next week, month or year. Right now is all there is and all there will ever be, so it's more important to me, to attend to the business of living without devoting time/anxiety to unnecessary, unwarranted, expensive tests just to make my doctor happy. Makes no sense to me. If those tests make sense as "routine", then why isn't my doctor and every other breathing soul having them too? It seems to me that it's sort of like breaking your leg yet continuing to have xrays for 2 years even though it has healed well with no pain or limp or problem of any kind. If there's an indication for them, yes, by all means have them. If not, why have them, all side effects considered versus what such tests can find when there's no indication of why/where to look. On the flip side, if you know something is not right and your doc discounts it, it's time to go into your best advocacy mode and demand further investigation/tests and/or change docs. Just my thoughts about it.

You're feeling great and that's wonderful, so enjoy your life, take excellent care of your health, maintain your follow up schedule and make sure your doc is doing the routine blood screenings. Beyond that, life is precious and wonderful! Cherish this and stay well.

Love, light and laughter,
Ink

My name is Barbara. I have a question but have not been able to get into a chat line. I had a lumpectomy of the left breast April 28, 2004. The cancer was 1.28 centimeters, was Invasive Ductal Carcinoma with a few cells in the sentinal lymph node. No cancer cells were found in the auxillry lymph nodes. Hormone receptors were ER positive PR negative. I had 6 1/2 weeks of radiation. I now have a lump about the size of an egg in the area where the tumor was removed. It has been excised three times removing
'old blood' that did not contain any cancer cells. The lump is supposed to be 'scar tissue' . I was told it would go away eventually. Is this 'normal'? The doctor measured the lump and scheduled an appointment in three months. I am taking arimedix.

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