Radiation Exposure

mp327
mp327 Member Posts: 4,440 Member
edited April 2013 in Anal Cancer #1

I am posting the following information from an article that appeared in the April 2013 issue of "Consumer Reports on Health."

"CT scans:  Know your radiation risk"

Doctors today are using CT scans and other tests more than ever before.  And if used at the right time and for the right patient, they can be lifesaving.  But the doctors ordering those radiation-emitting tests are doing a poor job of explaining their risks to patients, according to new research.

In a recent study in the Archives of Internal Medicine, researchers from the University of Washington School of Medicine surveyed 235 patients who had undergone a non-urgent computed tomography (CT) scan and found that one-third of them didn't know they had been exposed to radiation.  Of those who were aware of the danger, only 45 percent said their health care provider had informed them about it.  Most of the patients substantially under-estimated the level of exposure, and most said they were not worried about any risk of cancer.

Radiation from CT scans--each of which is equivalent to 100 to 500 chest x-rays--might contribute to an estimated 29,000 future cancers a year, a 2009 study suggests.  Yet some hospital systems and some doctors continue to order them more often than they should, exposing patinets to needless risk and expense.

"Many health care providers have little knowledge about radiation and thus are poorly equipped educators," wrote the authors of the study in the Archives of Internal Medicine.  In fact, about one in five physicians fails to receive formal instruction about radiation exposure, according to a small study at the University of Colorado School of Medicine.  The researchers also found that even doctors who do get a few hours of training aren't more likely to discuss radiation risks with patients. 

It's a doctor's job to ensure that patients are aware of the benefits and risks of their recommendations.  If you feel uninformed, talk with your doctor.  Here are some tips for doing just that:

1)  Find out if you really need a CT scan.  If your doctor orders one, ask whether magnetic resonance imaging (an MRI) or an ultrasound can be done instead.

2)  Be wary of double scans.  A double CT scan, one with a contrast agent and another without, can offer useful information, but it's not usually needed.

3)  Ask another doctor.  Get a second opinion if you think a CT scan is being pushed too strongly.  Studies have found that physicians who own scanners use imaging substantially more than those who refer patinets to radiology centers.

4)  Break the routine.  Currently, a CT scan is only recommended for screening for lung cancer in people with the highest risk for the disease.

RISKY IMAGING

Twenty to 40 percent of computed tomography (CT) scans could be avoided if the physicians ordering them followed clinical guidelines governing their use, according to a study in the July 14, 2010 Journal of the American Medical Association.  If your doctor orders a CT scan or any of the other tests listed below, ask if it's really necessary, and make sure that you understand the benefits and risks.                                                                                                                                   

 

EXAMINATION                             RADIATION DOSE (in milisieverts)                                                    TIME*

 

Computed tomography (CT)

Sinuses                                                         .06                                                                                      2 months

Head                                                             2.0                                                                                      8 months

Chest                                                            7.0                                                                                      2 years

Abdomen & Pelvis                                          10                                                                                        3 years

 

Fluoroscopy (Continuous X-ray)

Barium swallow                                              1.5                                                                                      6 months

Coronary angiography                                    5 to 15                                                                                20 months to 5 years

 

Nuclear

Lung                                                              2.0                                                                                      8 months

Bone scan                                                     4.2                                                                                    1 year, 4 months

Cardiac                                                          12.5                                                                                    4 years

 

X-ray

Arm or leg                                                      0.001                                                                                   Less than 1 day

Chest (one view)                                             0.1                                                                                      10 days

Lumbar spine                                                  0.7                                                                                      3 months

Abdomen                                                        1.2                                                                                      5 months

 

Other

Mammography                                                0.7                                                                                       3 months

Bone density                                                   0.001                                                                                   Less than 1 day

 

*TIME--This refers to the time needed to accumulate comparable exposure from typical environmental radiation (I could not get this to fit in the column)

 

I thought this was quite interesting information.  I am just reporting this as stated in the article and cannot verify or explain these numbers, so please don't put me on the spot!  Smile

 

«1

Comments

  • Marynb
    Marynb Member Posts: 1,118
    Radiation exposure
    When I read this, it really makes me nervous. i am a person who has had a lot of radiation exposure over the years......and cancer twice. I know I have had way more than recommended. Way, way, more.

    Some on this site have ct scans every six months for 5 yrs?
  • eihtak
    eihtak Member Posts: 1,473 Member
    Marynb said:

    Radiation exposure
    When I read this, it really makes me nervous. i am a person who has had a lot of radiation exposure over the years......and cancer twice. I know I have had way more than recommended. Way, way, more.

    Some on this site have ct scans every six months for 5 yrs?

    I'm with you.....

    I too have had more than recommended safe doses of radiation between diagnoses, treatment, and follow-up for both anal and breast cancer. I am torn though, as I have stated in the past, it was at my 1yr follow-up PET scan that my breast cancer was discovered. It was a rare slow growing cancer that often goes undetected on mammograms. Had it not been found till later it may have been too late to succesfully treat. I now am scanned every 6 months for chest and pelvis.....nervous yes. Maybe I'll discuss a better plan with my doctor, but for me I think this may still be the best choice????

    This is one of those worries that I have to trust my doctors advice and then put in Gods hands!

  • Marynb
    Marynb Member Posts: 1,118
    eihtak said:

    I'm with you.....

    I too have had more than recommended safe doses of radiation between diagnoses, treatment, and follow-up for both anal and breast cancer. I am torn though, as I have stated in the past, it was at my 1yr follow-up PET scan that my breast cancer was discovered. It was a rare slow growing cancer that often goes undetected on mammograms. Had it not been found till later it may have been too late to succesfully treat. I now am scanned every 6 months for chest and pelvis.....nervous yes. Maybe I'll discuss a better plan with my doctor, but for me I think this may still be the best choice????

    This is one of those worries that I have to trust my doctors advice and then put in Gods hands!

    Eihtak
    I am torn too. They found a second cancer in me with scans. I have had so many scans I could be a fridge magnet! It is nerve racking not to have follow up scans and I am still thinking about when to ask for another scan. I do trust my doctors and I am grateful they are judicious about using radiation.
  • 7243
    7243 Member Posts: 249 Member
    I posted this in another string ... Posting again FYI long
    Apr 10, 2013 - 10:37 am

    A bit about how I made my decision for those who are interested!! 

    I elected to receive care at a Cancer Institute where they use a multi-diciplinary approach to cancer treatment and are firmly rooted in research.  The Colo-Rectal team I work with has designed an individualized follow-up care plan for me based on a thoughtful risk-benefit analysis (using past and current NCCN anal cancer "guidelines", the American College of Radiologist's "Image Gently Image Wisely recommendations", and their body of clinical experience and knowledge and other methods I don't have access to) that CT scanning is in my best interest.  This decision took into consideration the stage of the cancer and treatment provided (Combined Chemo-Radiation (IMRT) and doses provided), balanced against my risk of recurrence.  I also had input into my careplan and elect to follow their guidance and recommendations.  Fortunately, one of the panel members for the past and current NCCN guidelines is a department director at this Cancer Instiitute and some of their research used to develop the tools to treat anal cancer, which raises my confidence as to the planning, but in the end the decision is mine.  NOt to mention the Institute uses the most advanced CT technology available today.

    Through my cancer experience I have learned (by reading and experiencing) ... Cancer care is complex and requires an entire team to plan "our" care based on current research.  NCCN guidelines are a "concensus" based on current evidence and are "guidelines" for our physicians to incorporate into care plans and decisions.  These guidelines are "recommendations" based on category 2A Evidence and Concensus (read the guideline and discuss with your team to fully understand that category of evidence).

    Guidelines are just that "Guidelines".  I am not diminishing the value of the NCCN guidelines or any other clinical guideline, however,  there is no excluding the clinical and medical judgement of the physicians and experts who treat us, OR we could go to anyone who uses a "checklist" and our physicians and clinical care team would no longer be needed.  And care and treatment should always be individualized based on our unique clinical circumstances. 

    Even the current guideline states, "any clinician seeking to apply the NCCN guideline is expected to use independent medical judgement in the context of individual clinical circumstances to determine any patient's care and treatment".

    Everyone of us must participate in our care decision and inform ourselves as much as we can (that's why we're here on this board) and be able to ask questions of our care team and come to an informed decision about our care, treatment and services AND PARTICIPATE IN CARE DECISIONS.

    So, here in our support circle, we will always see "individualized" careplans.  Empower yourself with knowledge, then discuss with the care team you TRUST.

    All this said ... this is my opinion and experience shared in that it might help even one person on this board...which brings meaning to my more than two year, difficult cancer experience. 

      And as a note, all CT scanners are not the same in that newer scanners are designed to reduce exposureand are much more efficient. AND the technique and procedure protocols designed and used by the imaging centers are extremely important in reducing radiation exposure (make sure your imaging center follows current "image wisely" practices ... ask them!):

    Check these sites out to understand more about imaging:

    http://www.acr.org/

    http://imagewisely.org/

    http://www.news-line.com/onenews.lasso?-Search=Action&-token.profession=NL&-token.target=onenews&-Table=webinfo&-MaxRecords=50&-SkipRecords=0&-Database=newsline&-KeyValue=6703


     And all the links shared in previous posts.  I respect the decision anyone makes about their care!!  

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    7243 said:

    I posted this in another string ... Posting again FYI long

    Apr 10, 2013 - 10:37 am

    A bit about how I made my decision for those who are interested!! 

    I elected to receive care at a Cancer Institute where they use a multi-diciplinary approach to cancer treatment and are firmly rooted in research.  The Colo-Rectal team I work with has designed an individualized follow-up care plan for me based on a thoughtful risk-benefit analysis (using past and current NCCN anal cancer "guidelines", the American College of Radiologist's "Image Gently Image Wisely recommendations", and their body of clinical experience and knowledge and other methods I don't have access to) that CT scanning is in my best interest.  This decision took into consideration the stage of the cancer and treatment provided (Combined Chemo-Radiation (IMRT) and doses provided), balanced against my risk of recurrence.  I also had input into my careplan and elect to follow their guidance and recommendations.  Fortunately, one of the panel members for the past and current NCCN guidelines is a department director at this Cancer Instiitute and some of their research used to develop the tools to treat anal cancer, which raises my confidence as to the planning, but in the end the decision is mine.  NOt to mention the Institute uses the most advanced CT technology available today.

    Through my cancer experience I have learned (by reading and experiencing) ... Cancer care is complex and requires an entire team to plan "our" care based on current research.  NCCN guidelines are a "concensus" based on current evidence and are "guidelines" for our physicians to incorporate into care plans and decisions.  These guidelines are "recommendations" based on category 2A Evidence and Concensus (read the guideline and discuss with your team to fully understand that category of evidence).

    Guidelines are just that "Guidelines".  I am not diminishing the value of the NCCN guidelines or any other clinical guideline, however,  there is no excluding the clinical and medical judgement of the physicians and experts who treat us, OR we could go to anyone who uses a "checklist" and our physicians and clinical care team would no longer be needed.  And care and treatment should always be individualized based on our unique clinical circumstances. 

    Even the current guideline states, "any clinician seeking to apply the NCCN guideline is expected to use independent medical judgement in the context of individual clinical circumstances to determine any patient's care and treatment".

    Everyone of us must participate in our care decision and inform ourselves as much as we can (that's why we're here on this board) and be able to ask questions of our care team and come to an informed decision about our care, treatment and services AND PARTICIPATE IN CARE DECISIONS.

    So, here in our support circle, we will always see "individualized" careplans.  Empower yourself with knowledge, then discuss with the care team you TRUST.

    All this said ... this is my opinion and experience shared in that it might help even one person on this board...which brings meaning to my more than two year, difficult cancer experience. 

      And as a note, all CT scanners are not the same in that newer scanners are designed to reduce exposureand are much more efficient. AND the technique and procedure protocols designed and used by the imaging centers are extremely important in reducing radiation exposure (make sure your imaging center follows current "image wisely" practices ... ask them!):

    Check these sites out to understand more about imaging:

    http://www.acr.org/

    http://imagewisely.org/

    http://www.news-line.com/onenews.lasso?-Search=Action&-token.profession=NL&-token.target=onenews&-Table=webinfo&-MaxRecords=50&-SkipRecords=0&-Database=newsline&-KeyValue=6703


     And all the links shared in previous posts.  I respect the decision anyone makes about their care!!  

    Mp327

    Shocking.  Absolutely shocking.

     

    Thank you for helping us to make better choices in the future.

  • LaCh
    LaCh Member Posts: 557
    Marynb said:

    Eihtak
    I am torn too. They found a second cancer in me with scans. I have had so many scans I could be a fridge magnet! It is nerve racking not to have follow up scans and I am still thinking about when to ask for another scan. I do trust my doctors and I am grateful they are judicious about using radiation.

    diagnostics vs theraputic

    What I'd like to know is how much full body radiation there is during treatment. IMRT claims to use a narrow, focused beam with no radiation scatter (I asked before and during treatment). Then why is the treatment room below street level? Why do two-foot-thick lead doors slide shut during treatment, isolating patients inside and others outside? If there's no danger of scatter or of healthy, un targeted body parts being exposed to radiation, why these protective measures, and if those being protected are meters or tens of meters away from the patient on the table, what does that say about the patient on the table?  Frustrating is the lack of transparency, the evasive answers to direct questions (or at least in my experience). How much radiation was my chest cavity exposed to during treatment? My abdominal cavity? My head? I don't know and don't even know who to ask to get the real answer. As for diagnostics that use radiation, I've said No to CTs in the past (for other things unrelated to the cancer) and no to a PET now to evaluate what's happened to the tumor.  It's exhausting to be the gatekeeper. It's exhausting having to do battle and say "no" to physicians who cavalierly recommend PETs, CTs and all manner of X-ray studies.  Why are these diagnostic tests so prevalent, so common and so often prescribed? My opinion is money. They're huge money-makers. That, and the art in medicine has been lost in direct response to the rise in technology. Medicine is no longer an art and science. The "art" was lost with the rise in technology and also litigation for "things the doctor didn't do but should have done and if he had my mother/sister/brother/wife would be alive," mentality.  Just my thoughts, please no "hate mail" or harsh criticism. It's just my opinion.

  • sephie
    sephie Member Posts: 650 Member
    LaCh said:

    diagnostics vs theraputic

    What I'd like to know is how much full body radiation there is during treatment. IMRT claims to use a narrow, focused beam with no radiation scatter (I asked before and during treatment). Then why is the treatment room below street level? Why do two-foot-thick lead doors slide shut during treatment, isolating patients inside and others outside? If there's no danger of scatter or of healthy, un targeted body parts being exposed to radiation, why these protective measures, and if those being protected are meters or tens of meters away from the patient on the table, what does that say about the patient on the table?  Frustrating is the lack of transparency, the evasive answers to direct questions (or at least in my experience). How much radiation was my chest cavity exposed to during treatment? My abdominal cavity? My head? I don't know and don't even know who to ask to get the real answer. As for diagnostics that use radiation, I've said No to CTs in the past (for other things unrelated to the cancer) and no to a PET now to evaluate what's happened to the tumor.  It's exhausting to be the gatekeeper. It's exhausting having to do battle and say "no" to physicians who cavalierly recommend PETs, CTs and all manner of X-ray studies.  Why are these diagnostic tests so prevalent, so common and so often prescribed? My opinion is money. They're huge money-makers. That, and the art in medicine has been lost in direct response to the rise in technology. Medicine is no longer an art and science. The "art" was lost with the rise in technology and also litigation for "things the doctor didn't do but should have done and if he had my mother/sister/brother/wife would be alive," mentality.  Just my thoughts, please no "hate mail" or harsh criticism. It's just my opinion.

    i like to read your opinions

    i think that the docs and institutions are very wary of litigation but they do want to try to be sure that the cancer is as gone as they can make it be and get to it quickly if it shows back up....i do wonder about the amt. of radiation i have gotten over the years....if i heard him correctly  ( and i was in a fog trying to hear everything )  some professional at MDA did tell me that the radiation possibly could make the cancer return but this was the only tx they knew of at this time....also,  the protective walls might be there also for possible accidents or probably some scatter as they are doing this all day long 5 days per week ( 7 days at mda)   every month every year.....  i did hope that i would not be getting another ct but have chosen to go with my radiation team at MDA and let them do one more next year which is my 5th year after tx....  sephie

  • NYinTX
    NYinTX Member Posts: 64
    7243 said:

    I posted this in another string ... Posting again FYI long

    Apr 10, 2013 - 10:37 am

    A bit about how I made my decision for those who are interested!! 

    I elected to receive care at a Cancer Institute where they use a multi-diciplinary approach to cancer treatment and are firmly rooted in research.  The Colo-Rectal team I work with has designed an individualized follow-up care plan for me based on a thoughtful risk-benefit analysis (using past and current NCCN anal cancer "guidelines", the American College of Radiologist's "Image Gently Image Wisely recommendations", and their body of clinical experience and knowledge and other methods I don't have access to) that CT scanning is in my best interest.  This decision took into consideration the stage of the cancer and treatment provided (Combined Chemo-Radiation (IMRT) and doses provided), balanced against my risk of recurrence.  I also had input into my careplan and elect to follow their guidance and recommendations.  Fortunately, one of the panel members for the past and current NCCN guidelines is a department director at this Cancer Instiitute and some of their research used to develop the tools to treat anal cancer, which raises my confidence as to the planning, but in the end the decision is mine.  NOt to mention the Institute uses the most advanced CT technology available today.

    Through my cancer experience I have learned (by reading and experiencing) ... Cancer care is complex and requires an entire team to plan "our" care based on current research.  NCCN guidelines are a "concensus" based on current evidence and are "guidelines" for our physicians to incorporate into care plans and decisions.  These guidelines are "recommendations" based on category 2A Evidence and Concensus (read the guideline and discuss with your team to fully understand that category of evidence).

    Guidelines are just that "Guidelines".  I am not diminishing the value of the NCCN guidelines or any other clinical guideline, however,  there is no excluding the clinical and medical judgement of the physicians and experts who treat us, OR we could go to anyone who uses a "checklist" and our physicians and clinical care team would no longer be needed.  And care and treatment should always be individualized based on our unique clinical circumstances. 

    Even the current guideline states, "any clinician seeking to apply the NCCN guideline is expected to use independent medical judgement in the context of individual clinical circumstances to determine any patient's care and treatment".

    Everyone of us must participate in our care decision and inform ourselves as much as we can (that's why we're here on this board) and be able to ask questions of our care team and come to an informed decision about our care, treatment and services AND PARTICIPATE IN CARE DECISIONS.

    So, here in our support circle, we will always see "individualized" careplans.  Empower yourself with knowledge, then discuss with the care team you TRUST.

    All this said ... this is my opinion and experience shared in that it might help even one person on this board...which brings meaning to my more than two year, difficult cancer experience. 

      And as a note, all CT scanners are not the same in that newer scanners are designed to reduce exposureand are much more efficient. AND the technique and procedure protocols designed and used by the imaging centers are extremely important in reducing radiation exposure (make sure your imaging center follows current "image wisely" practices ... ask them!):

    Check these sites out to understand more about imaging:

    http://www.acr.org/

    http://imagewisely.org/

    http://www.news-line.com/onenews.lasso?-Search=Action&-token.profession=NL&-token.target=onenews&-Table=webinfo&-MaxRecords=50&-SkipRecords=0&-Database=newsline&-KeyValue=6703


     And all the links shared in previous posts.  I respect the decision anyone makes about their care!!  

    http://healthland.time.com/2013/02/20/bitter-pill-why-medical-bi

    I posted this before as well; I can understand how reassurring it may be to be trusting and having faith that someone is taking care of you and has your best interest at heart.......As a doctor in a health research discipline, I can assure you that this is not the case in modern US medicine......concensus decision-making is akin to "do like others do" and is not based on amassed scientifically tested clinical practice. In SCCA, there is a paucity of research as there is a paucity of research subjects......I am not interested in bursting your faith bubble, just think that people should be their own advocates and must actively and critically learn all there is about current variation in practice to  be active regulators of their own care rather than being passive, dependent, ignorant recepients of the all-knowing experts.....

     

    http://healthland.time.com/2013/02/20/bitter-pill-why-medical-bills-are-killing-us/#ixzz2Lk6nOS9h

     

  • lizdeli
    lizdeli Member Posts: 569 Member
    NYinTX said:

    http://healthland.time.com/2013/02/20/bitter-pill-why-medical-bi

    I posted this before as well; I can understand how reassurring it may be to be trusting and having faith that someone is taking care of you and has your best interest at heart.......As a doctor in a health research discipline, I can assure you that this is not the case in modern US medicine......concensus decision-making is akin to "do like others do" and is not based on amassed scientifically tested clinical practice. In SCCA, there is a paucity of research as there is a paucity of research subjects......I am not interested in bursting your faith bubble, just think that people should be their own advocates and must actively and critically learn all there is about current variation in practice to  be active regulators of their own care rather than being passive, dependent, ignorant recepients of the all-knowing experts.....

     

    http://healthland.time.com/2013/02/20/bitter-pill-why-medical-bills-are-killing-us/#ixzz2Lk6nOS9h

     

    Radiation

    I'm surprised that I don't glow in the dark by now considering all the radiation I've had!!!!

    Liz

  • 7243
    7243 Member Posts: 249 Member
    NYinTX said:

    http://healthland.time.com/2013/02/20/bitter-pill-why-medical-bi

    I posted this before as well; I can understand how reassurring it may be to be trusting and having faith that someone is taking care of you and has your best interest at heart.......As a doctor in a health research discipline, I can assure you that this is not the case in modern US medicine......concensus decision-making is akin to "do like others do" and is not based on amassed scientifically tested clinical practice. In SCCA, there is a paucity of research as there is a paucity of research subjects......I am not interested in bursting your faith bubble, just think that people should be their own advocates and must actively and critically learn all there is about current variation in practice to  be active regulators of their own care rather than being passive, dependent, ignorant recepients of the all-knowing experts.....

     

    http://healthland.time.com/2013/02/20/bitter-pill-why-medical-bills-are-killing-us/#ixzz2Lk6nOS9h

     

    NY in TX ... From one healthcare practitioner

    To another, I am my own advocate, I take an active role in my care choices, and don't defer to "all knowing" experts.  After two years of living with a cancer diagnosis, 32 years in health care, and many days and nights researching, reading, and learning .... I've made the best informed decisions possible....for me.   I don't trust everyone in the healthcare system and have had my share of lousy care.  So much so that i now travel many hundreds of miles to get care in a delivery system where I Trust the team and am an "active" advocate for my best interests.  

      I've read about all the research that's out there re; anal cancer, diagnosis, treatment, and follow-up and have had many long appointments, telephone calls, and e-mail conversations with my oncologist and other members of my care team, and like many here and elsewhere, made the best decisions possible....for me.  And have spent a good portion of my career trying to understand and manage "clinical variation".  Our system is not perfect and we have a long way to go with regard to "high reliability" in health care...however, it's the system we've got for now.  

    I'm saddened if you haven't been able to find care providers you trust, however being part of the system makes it that much more difficult.   I elected to leave my state to find great care after horrific experiences at home...fortunately, I didn't give up ... Good care is out there and not all physicians or delivery systems are in this to make a buck on the backs of patients.  Cynicism eats away at my immune system .... I gave it up Some time ago.  Just one small example of how I "actively" choose to make decisions for myself.

    I hear your opinion and felt the need to clearly express mine.  My process and  ultimately my informed decision making  works for me and may not be right for anyone else, however, it may stand as a frame of reference for those working through "their" own cancer journey.  Best to you and all.

     

     

     

     

     

  • eihtak
    eihtak Member Posts: 1,473 Member
    7243 said:

    NY in TX ... From one healthcare practitioner

    To another, I am my own advocate, I take an active role in my care choices, and don't defer to "all knowing" experts.  After two years of living with a cancer diagnosis, 32 years in health care, and many days and nights researching, reading, and learning .... I've made the best informed decisions possible....for me.   I don't trust everyone in the healthcare system and have had my share of lousy care.  So much so that i now travel many hundreds of miles to get care in a delivery system where I Trust the team and am an "active" advocate for my best interests.  

      I've read about all the research that's out there re; anal cancer, diagnosis, treatment, and follow-up and have had many long appointments, telephone calls, and e-mail conversations with my oncologist and other members of my care team, and like many here and elsewhere, made the best decisions possible....for me.  And have spent a good portion of my career trying to understand and manage "clinical variation".  Our system is not perfect and we have a long way to go with regard to "high reliability" in health care...however, it's the system we've got for now.  

    I'm saddened if you haven't been able to find care providers you trust, however being part of the system makes it that much more difficult.   I elected to leave my state to find great care after horrific experiences at home...fortunately, I didn't give up ... Good care is out there and not all physicians or delivery systems are in this to make a buck on the backs of patients.  Cynicism eats away at my immune system .... I gave it up Some time ago.  Just one small example of how I "actively" choose to make decisions for myself.

    I hear your opinion and felt the need to clearly express mine.  My process and  ultimately my informed decision making  works for me and may not be right for anyone else, however, it may stand as a frame of reference for those working through "their" own cancer journey.  Best to you and all.

     

     

     

     

     

    Pro-active.....

    Its one of those good/bad things these days. The term pro-active has become almost expected from a patient a little too often unfortunately. I agree with you, we need to become informed and make the decisions that are best for our personal situation.

    That was difficult for me (as many) when I was first diagnosed. My rbc was less than 2, I was severely anemiac, and in horrific pain from the location/size of the tumor. I was correctly diagnosed upon initial exam, scanned, tested, and began the whirlwind of treatment within days. I had no time or energy to research doctors until weeks into my ordeal. I was blessed to be confident in the medical team that I had, and although I often consult guidelines and advice from others with similar experience, two years later I still trust their advice.

    I do often wonder and feel for those who may not have been so lucky, and also have a lack of resources to help.......we SHOULD all be able to trust!

    As always, all in my prayers as we move forward in health!!

  • sandysp
    sandysp Member Posts: 868 Member
    eihtak said:

    Pro-active.....

    Its one of those good/bad things these days. The term pro-active has become almost expected from a patient a little too often unfortunately. I agree with you, we need to become informed and make the decisions that are best for our personal situation.

    That was difficult for me (as many) when I was first diagnosed. My rbc was less than 2, I was severely anemiac, and in horrific pain from the location/size of the tumor. I was correctly diagnosed upon initial exam, scanned, tested, and began the whirlwind of treatment within days. I had no time or energy to research doctors until weeks into my ordeal. I was blessed to be confident in the medical team that I had, and although I often consult guidelines and advice from others with similar experience, two years later I still trust their advice.

    I do often wonder and feel for those who may not have been so lucky, and also have a lack of resources to help.......we SHOULD all be able to trust!

    As always, all in my prayers as we move forward in health!!

    Small potatoes

    These scans are small potatoes in comparison to all the radiation we already had. I have to have another scan in September and I can't say I wish I didn't have to have another one, but I trust my provider is making the right decision. MSK has gotten everything right thus far. I trust them.

    We do have to advocate for ourselves, that is for sure. Had I advocated better for myself, I might have been diagnosed sooner. But this is one area I am at peace with.

    The weather is getting warm. A bigger threat to me is the sun!

    Sincerely,

    Sandy

     

     

     

  • LaCh
    LaCh Member Posts: 557
    sandysp said:

    Small potatoes

    These scans are small potatoes in comparison to all the radiation we already had. I have to have another scan in September and I can't say I wish I didn't have to have another one, but I trust my provider is making the right decision. MSK has gotten everything right thus far. I trust them.

    We do have to advocate for ourselves, that is for sure. Had I advocated better for myself, I might have been diagnosed sooner. But this is one area I am at peace with.

    The weather is getting warm. A bigger threat to me is the sun!

    Sincerely,

    Sandy

     

     

     

    sandysp

    If you don't mind my asking, where do you live that you use MSK?  I live about 10 minutes walking distance from them but didn't use them because they don't accept my insurance (they were my first choice because of the close proximity). As for trusting my providers to do what's in my best interests....well, I envy you there. I have zero confidence that they know or will do what's in my best interests. Well, that's not entirely true. I trust my gastroenterologist. I fired my two oncologists as soon as treatments concluded and haven't seen either one of them since. And it was me who said No to any more diagnostics that use radiation.  I assume the tumor's gone. If it isn't, well, then it isn't.  I'll have a biopsy in a few months, not so that I'll know what to do medically but so that I'll simply know what to do. Go back to Spain, that sort of thing.  I'm done treating this (but really think that it's taken care of, in any case).

  • Marynb
    Marynb Member Posts: 1,118
    sandysp said:

    Small potatoes

    These scans are small potatoes in comparison to all the radiation we already had. I have to have another scan in September and I can't say I wish I didn't have to have another one, but I trust my provider is making the right decision. MSK has gotten everything right thus far. I trust them.

    We do have to advocate for ourselves, that is for sure. Had I advocated better for myself, I might have been diagnosed sooner. But this is one area I am at peace with.

    The weather is getting warm. A bigger threat to me is the sun!

    Sincerely,

    Sandy

     

     

     

    Sandy
    I really have to disagree with you that scans are small potatoes! Exposure to unnecessary radiation after cancer treatment is really not good at all.
  • LaCh
    LaCh Member Posts: 557
    Marynb said:

    Sandy
    I really have to disagree with you that scans are small potatoes! Exposure to unnecessary radiation after cancer treatment is really not good at all.

    marynb

    I agree.

  • Lorikat
    Lorikat Member Posts: 681 Member
    sandysp said:

    Small potatoes

    These scans are small potatoes in comparison to all the radiation we already had. I have to have another scan in September and I can't say I wish I didn't have to have another one, but I trust my provider is making the right decision. MSK has gotten everything right thus far. I trust them.

    We do have to advocate for ourselves, that is for sure. Had I advocated better for myself, I might have been diagnosed sooner. But this is one area I am at peace with.

    The weather is getting warm. A bigger threat to me is the sun!

    Sincerely,

    Sandy

     

     

     

    Sandy,

    I alsoagree also agree that the radiation from the scans are worth the extra just for my peace of mind.Ialso a agree thatwall radiation is dangerous!  So what to do?

  • Marynb
    Marynb Member Posts: 1,118
    Lorikat said:

    Sandy,

    I alsoagree also agree that the radiation from the scans are worth the extra just for my peace of mind.Ialso a agree thatwall radiation is dangerous!  So what to do?

    Radiation
    Maybe the answer is to follow NCCN guidelines and have scans if there are clinical symptoms?
  • Marynb
    Marynb Member Posts: 1,118
    Lorikat said:

    Sandy,

    I alsoagree also agree that the radiation from the scans are worth the extra just for my peace of mind.Ialso a agree thatwall radiation is dangerous!  So what to do?

    Radiation
    Maybe the answer is to follow NCCN guidelines and have scans if there are clinical symptoms? Also, a scan is not fool proof, by any means.
  • Marynb
    Marynb Member Posts: 1,118
    Lorikat said:

    Sandy,

    I alsoagree also agree that the radiation from the scans are worth the extra just for my peace of mind.Ialso a agree thatwall radiation is dangerous!  So what to do?

    Radiation
    Maybe the answer is to follow NCCN guidelines and have scans if there are clinical symptoms? Also, a scan is not fool proof, by any means.
  • sandysp
    sandysp Member Posts: 868 Member
    LaCh said:

    sandysp

    If you don't mind my asking, where do you live that you use MSK?  I live about 10 minutes walking distance from them but didn't use them because they don't accept my insurance (they were my first choice because of the close proximity). As for trusting my providers to do what's in my best interests....well, I envy you there. I have zero confidence that they know or will do what's in my best interests. Well, that's not entirely true. I trust my gastroenterologist. I fired my two oncologists as soon as treatments concluded and haven't seen either one of them since. And it was me who said No to any more diagnostics that use radiation.  I assume the tumor's gone. If it isn't, well, then it isn't.  I'll have a biopsy in a few months, not so that I'll know what to do medically but so that I'll simply know what to do. Go back to Spain, that sort of thing.  I'm done treating this (but really think that it's taken care of, in any case).

    Biopsy

    I am sorry to hear MSK would not take your insurance and this surprises me actually. They have been so good working with my insurer. It hasn't always been an easy road for them either working with my insurer either. They also seem to take Medicaire and Medicaid.

    I credit radiation for saving my life.

    If my blood tests had come back better, I doubt they would have ordered the scan in September. It wasn't until after the blood tests came back that they ordered the scan. But it doesn't bother me to have the scan since after all the radiation I had, it seems like small potatoes.

    I am so sorry you had to dismiss your oncologists. How stressful.

    My GI was very ignorant when it came to anal cancer and gave very bad advice. He understands the protocol now. I was his first anal cancer patient. My Oncologist specialised in GI cancers so I was very lucky.

    Good luck to you.

    All the best,

    Sandy