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Radiation Exposure

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

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

 

Marynb
Posts: 1134
Joined: Aug 2012

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
Posts: 809
Joined: Oct 2011

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
Posts: 1134
Joined: Aug 2012

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.

LaCh
Posts: 509
Joined: Dec 2012

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's picture
sephie
Posts: 514
Joined: Apr 2009

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

ina2525
Posts: 5
Joined: Jul 2009

I agree with you, all the way.  I am seven years out and all things considered doing well...except that pelvic radiation destroyed my left hip and now I will be needing a total hip replacement.

But I am alive and grateful for that.

7243
Posts: 211
Joined: Feb 2011
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

Phoebesnow
Posts: 447
Joined: Apr 2011

Shocking.  Absolutely shocking.

 

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

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

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's picture
lizdeli
Posts: 520
Joined: Jul 2009

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

Liz

7243
Posts: 211
Joined: Feb 2011

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
Posts: 809
Joined: Oct 2011

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's picture
sandysp
Posts: 734
Joined: May 2011

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
Posts: 509
Joined: Dec 2012

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).

sandysp's picture
sandysp
Posts: 734
Joined: May 2011

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

 

sandysp's picture
sandysp
Posts: 734
Joined: May 2011

I have a spot on my lung and elevated Carbon Dioxide levels along with a couple of other problems with the blood tests. I guess this is why I have to have the scan. 

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

sandy,  i have always had elevated levels of co2 on every blood test done at mda ....they never address the issue...probably because my lungs are clear...there was something on one that they watch but it seems to stay the same so docs are not addressing the issue....  scans scans ,,,,they do really scare me and i had soooooo much radiation on my neck in the 70"s for skin cancer which now they do not do that for basil cell carcinomas....and i had radiation to my ears for infections in the 50's as a child....so they watch my thyroid now...medicine has changed a lot , thank heavens....and i worked as dental hygienist for years before we wore gloves, masks, etc...and i did not worry about radiation exposure too much... i am probably going to blow up in a few years....  ugh!!!!!    take care    hugs   sephie

LaCh
Posts: 509
Joined: Dec 2012

Hi Sandysp,

Well, I was sorry that MSK didn't take my insurance but it's all in the rear view mirror. It's in the past, so it doesn't affect me today. It wasn't stressful firing my oncolgists, it was a good day. My feeling was "problem solved." I consider the whole thing over, and now contend with the cure, rather than the disease. It's the cure that's causing my current problems and there's no remedy for those. In any case, a doctor is the LAST person I'd ask to help sort it out. They don't know the answers anyway, so it's no great loss. Western medicine works largely by suppression; hypertention is supressed with drugs, elevated cholesterol is suppressed with drugs, elevated blood sugar is supressed with drugs, tumors are suppressed with chemo and radiation (and whether one sees this as random chance or deliberate choice, the reality is that all these things are wildly lucrative for the companies doling out the drugs/treatments). No one looks for the root causes to address those. Anyway, I do what I can to feel as good as I can, with varying degrees of success and am content with that but my take on things in general is that what happens in the past is past. I don't think about it too much. 

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

so what I want to do -- go to Spain, 8 weeks post radiation/chemo; I have also decided that if this first treatment protocol did not take, then too bad for me, as i will not undergo another round or any possible surgery; further, I think it is unethical to not take insurance (because it doesn't reimburse sufficiently), and that this indicates that MDs/ hosp do not act in the best interests of the "patient"........I find that "trust" is another way of succumbing to the passive stance of "they know best", etc. And Sandy, amount of radiation from a whole body CAT scan is not insignificant....it can reactivate HPV cells to start their proliferation. I won't go through airport scanners anymore either.

LaCh
Posts: 509
Joined: Dec 2012

Have you ever been to Spain? 

I remember a conversation that I had in 2011, the last time that I was in Spain. I was explaining to four of my gaping-mouthed friends about the health care system in this country. They were stupified. "You have to do WHAT?  You have to pay WHAT?  If they don't take your insurance then WHAT? What does take your insurance even mean?" Now, Spain has it's share of problems and MORE than it's share, with it's economy in ruin, a shocking, almost 50% unemployment rate among 18-25 year olds, people being evicted all over the country, government corruption so rampant, so common and so extreme that it makes America look like the home of angels, but my feeling is, no more treatments, no more radiation, no more doctors, no more bullcrap and if I find out that I still have cancer, it's back to Spain for me.  As an expat, I'd be less affected by the problems plaguing Spain than my friends in Spain are. If the cancer is still with me, I'll find out sooner or later and then I'll live whatever time I have left in the place that I love.  Everybody dies.  The point is, how do you live.  I agree with you. Placing trust in one's doctors, in western medicine, in the health care system of the United States, is all trust badly placed. Western Medicine is good at fixing broken things and not so good at fixing sick things. It's good at supressing symptoms (lowering blood pressure, lowering cholesterol, lowering stomach acid, damping your immune response when you have an immune response run amok and so on, but not good at addressing the underlying cause of the problem) it's good at isolating a problem and not so good at seeing the person as a whole.  The American health care system is a for profit system and this is and always will be in opposition to delivering affordable health care.  It's profit DRIVEN, not medically driven. We work hard to keep people sick rather than resolving problems, and this is also and extremely true of the phamarceutical companies. There are egregious conflicts of interest between doctors, pharmaceutical companies, hospitals and consumers. Western medicine is excellent with technology but still practicing 19th century medicine in many ways.  It's way too cavalier with dangerous diagnostics. Simply because you can do a thing, doesn't mean that you should do a thing. Western medicine sees cause and effect, other modalities see it more as a cycle, one thing sets off another which feeds the first which perpetuates the cycle. Western medicine sees a line. Others see a circle. To address one thing and ignore another addresses nothing. I'm disgusted, frustrated and unwilling to trust in any of it any more (well, I never really did in the first place).  Spain is no panacea but the part of Spain that I go to is off the grid, isolated and beautiful. No one where I go--and I mean no one--speaks English and rather than miss is, I revel in being surrounded in Spanish. I speak the language, love the language and didn't miss English. The economy is in ruin and the euro is still worth a tad more than the dollar, but the part that I go to is so economically depressed that my American dollar would go 4 times as far.  Everyone dies. The question is, how do you live? 

For those who will have something disagreable to say, these ideas reflect my opinion. You can't argue with an opinion.

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

I was born in Germany and returned for about 10 years when my husband was active duty. Freom Heidelberg we were able to travel all over Europe, E.Europe, but sadly did not make it to Spain, although we snowboarded a lot in Swiss and Italian Dolomites, I did visit Portugal, Greece, and Crete, and the Azores...I never wanted to return to the States in 2000, and would leave right now forever anywhere in Europe if I could. One of my remaining goals as soon as I get over this SCCA experience. 8 weeks post radiation and already dreaming of sunny shores of the Riviera...Spain sounds good. I would live in a tent if I had to....go for it. I lived in NYC for most of my life and just happened to be in TX when this SCCXA hit, otherwise would have gone to MSK, and if they would not have taken my military insurance (which most NY hosp do not), then I would have been in your position as well. What's great about this disease is that it has forced me to take a careful look at what I really want to do or not do......and then do it.....

LaCh
Posts: 509
Joined: Dec 2012

Europe and europeans certainly have a different way of seeing, doing and thinking about things, from food to family to the work/life equation (they seem to work to live, while Americans seem to live to work.)  You should go back if you have the opportunity.  No one knows what the future holds, the good, the bad or anything in between.  I can't say that the cancer has changed the way that I see things. My feelings and priorities are what they were before but certainly, if I found out that I still had cancer, I'd DO things differently than I am now in terms of no longer needing to save money for my old age.  And yes, first priority would be to return to Spain.  And try to explain to a European living in a country with socialized medicine that I live 5 minutes on foot from one of the pre-eminent cancer centers in the world but because they "didn't accept my insurance," I couldn't be treated there... and that's pretty much ALL you have to say about health care in America.

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

i am really mortified that MSK would not take your insurance   and for NYinTX that they would not take military insurance ....it is ok for someone to put their life on the line for us but our great hospital would not take their insurance....crazy..... i would love to go to Spain also and i will work on it....   got invited to go to tuscany but it would take 3 airplanes and a train ride with a group of really strong women... i still have too many issues ...get tired easily ...get sore...etc...and i would need help so i did not want to be a burden so i had to turn it down... i want to travel more thatn anything but have to do it my way.....  sephie

Marynb
Posts: 1134
Joined: Aug 2012

 What a great cat!  

LaCh
Posts: 509
Joined: Dec 2012

I didn't take it personally that MSK refused to accept my insurance, I took it as one more absurd, egregious, shameful symptom of our health care system, because at the end of the day, it ALL leads back to only one reason. Money.  In a profit-driven business model, which is what our health care system is, there's only one thing that dictates all things and that's money. My insurance didn't pay enough money and MSK doesn't participate for that reason. Obama's health care reform was health care INSURANCE reform.  It's still and only a for profit BUSINESS.  The MSK thing was just one more "thing" for me but I'm disgusted and completely fed up with it all, and I'm done with doctors, done with insurance, done with tests and treatments.  I'm ready to live and die in whatever way either unfolds. We all go sometime; I'd rather die calm and contented than pissed off and frustrated and the only way to avoid the latter is to avoid any more encounters with our medical system and those who are a part of it.  Whether or not I make it back to Spain remains to be seen. I have money and medical issues that make it somewhere difficult and extremely difficult. We'll see.  

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

 i agree with a lot of what you have said...  back in 2009 when i was diagnosed  , i was not sure that i even wanted to do chemo and radiation.... i was hurting sooooooo badly just from the biopsy and bm's that i was ready to just let it run its course and go to Heaven ( i believe in God and always have )....i have no children but do have a hubby who asked me to try the treatment.    at that time, i had never heard of anyone who had this...then on the next day,  it came out that Farrah had it ....sooo  i watched her special on tv just looking for a few hints on how to help the pain....then saw that it came back on her and then saw her in the bed dying...that did not scare me because it seemed like the way to stop the pain....Now, i wish that i had asked more questions about the radiation.... i just was sooooooo tired and in so much pain that i just went thru all the steps of tx and let them guide me along....i do remember that some doc  at MDA told me that this tx radiation could possibly cause more cancers in the future but that this is the only tx that they knew of  and he said this tx is barbaric....sooooooooo we will see..... maybe we can keep letting people know how we are in 6 years then 8 then 10  then 15 then 20, and etc.....to help others.... i am 60 years old now and lost my younger brother to Diabetes when he was 47.... i think diabetes is worse...... on another note,  LaCh, if you get to go to spain , does your dog get to go.... i love alll animals but just have a fab cat at this time.... used to have the greates yellow lab but he passed last year.....i never got to take them on any trips..... thx for your input...  sephie

LaCh
Posts: 509
Joined: Dec 2012

Hey Sephie,

You know, I hesitated to do the treatments too.  No one said to me, "Hey, you know what, this is barbaric but it's all we've got," and I would have greatly appreciated the honesty and it would have gome a very long way to building a bridge of trust, instrad of the deep, deep distrust that I have in the whole lot of 'em. That said, they didn't have to tell me because I already figured it was brutal and barbaric.  So do I regret my decision to have the thing treated?  I don't know.  I can't say that I do but I can't say that I don't. I'm almost 60 too and there are days that I feel more or less ready to die. When I got the diagnosis my only thought was--and is--for my dog.  I wouldn't love him more if he carried my DNA.

I'm sorry to hear about your brother... Losing a loved one is hard, unspeakably hard.  Part of my readiness to die has to do with someone I lost 7 years ago, and while I don't believe in god, I do believe that consciousness survives physical death, so that's part of my equation when I factor all things together. 

As for my dog and Spain, technically, yes, you can take a dog to Spain but I didn't and wouldn't, 1) because I went for 5 and 6 weeks respectively and wouldn't torture him with a plane trip for that amount of time and 2) I'd never put him in the cargo bay of a plane anyway, not unless they gave me an adjoining box alongside his...  just kidding. I'd never put him in cargo and he's too big to come in the cabin with me. But walking in the isolated mountains of Andalucía, I thought many, many times, "the only thing missing is him," and if he had been there with me, I probably never would have come back. to NY. Sadly and ironically, the friends who looked after him both times are now unable to do it again. My friend--the woman of the couple-- a friend I've known since I was a teen, has stage 3 pancreatic cancer. She was diagnosed 5 or 6 months before I was, but the cancer that she has is far, far worse.  In any case, I have no idea what I'd do with my dog but a trip to Spain is so far off that it's nothing I have to think about right now.  There are days when I think that I'll definitely make it back there and then there are just as many days when I think that I definitely won't. More immediate is a short trip I'm supposed to make with my cousin to celebrate our mutual 60th birthdays (same year, different month). We're thinking of September because it's off-season and cheaper but I have no idea what I'm going to do with my dog (meaning, who's going to look after him).  He's like an appendage; we're almost never apart and I'm not sure who has more separation anxiety, him or me, when we're apart.   

Marynb
Posts: 1134
Joined: Aug 2012

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
Posts: 509
Joined: Dec 2012

I agree.

Lorikat's picture
Lorikat
Posts: 551
Joined: Jul 2011

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
Posts: 1134
Joined: Aug 2012

Maybe the answer is to follow NCCN guidelines and have scans if there are clinical symptoms?

Marynb
Posts: 1134
Joined: Aug 2012

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
Posts: 1134
Joined: Aug 2012

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.

Angela_K
Posts: 370
Joined: Jan 2011

After reading this I cancelled my 6th month CT check up but followed through with my appt with radiation onc to discuss.  (I travel over 200 mi to see my treatment team.)  She and I decided together to have pelvic/abdomen CT and chest x-ray once a year and to continue to have the anascopes with my surgeon onc every 6 months til the 5 year mark. She felt that this was perfect for me and  I feel really good about that.  I appreciate she was willing to LISTEN.  (She did end the visit with a DRE.  Her resident joined in, too.  I love that my butt can teach. :))

Thanks, Martha, for starting this thread.  I've learned a lot.

 

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

I'm glad you and others have found this info helpful.  It's good that you and your rad onc agreed on a 1x/year schedule for you on the scans.  I am due for another scan on June 3rd. and I am going to have the same discussion with my doc that you had with yours.  When should that last scan take place?--I'll be interested to hear what he says.  I don't want to keep this up and I will be hitting the 5-year mark in September.  I think I've had enough.

Angela_K
Posts: 370
Joined: Jan 2011

Dr. Thawani said if everything goes well she would skip the 4th year scan, scan in the 5th year and then decide from there.  I would continue the scopes for 5 years.  I hope your visit goes well. And contratulations on your recent race.  You and Orb are my favorite runners!

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

That sounds like a good plan.  I think the scopes for 5 years is good too.  I'm not sure if my colorectal doc will keep me coming back for those after the 5-year mark or not.  I will find out in August.

Thanks for the congrats!  Orb and I picked a cold and rainy day to go racing, didn't we!

sandysp's picture
sandysp
Posts: 734
Joined: May 2011

Ha, ha! Big potatoes. Scans are big potatoes!I don't like radiation or any more than anyone here but apprecioate it as a stage 3 cancer sufferer, it saved my life. I am just in year two. I am going to follow the advice of my doctors at MSK when it comes to scans. They are very thoughtful as to what is needed. They don't just order needless stuff. I have thickening and a spot in the lower right lung. It got smaller since we started this, according to the last scan so hopefully it is gone now but since it was in my lymph glands, it could spread to the lung. We all know that is one of the areas for some unknown reason this cancer spreads to when things go ary. Early detection is a good idea. This was not my first cancer diagnosis. I will take my chances with necessary scans given according to protocol.

Sincerely,

Sandy

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