ETF cupcake
Registered: 09/07/09
Posts: 11
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Reply with quote | #1 | I see so many different opinions-
If we know, as has been well and long established, that high doses of radiation from things like X Rays and CTs increases your risk of cancer, WHY would it be advantageous for your Dr to perform PET scans, CT scans, etc, every 3-6 months if you don't have any symptoms?
It's seems like a darned if you do, darned if you don't idea- if you don't get scanned, you might not catch anything as early as possible, but if you DO gte scanned a lot, you are definitely exposing yourself to cancer causing testing mechanisms- frequently, which in turn would UP your cancer risk in general.
Care to weigh in on this please? |
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Calico

lifetime member
Registered: 03/16/08
Posts: 1,091
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Reply with quote | #2 | This actually weighs heavily on my mind as well.
I thought about asking and then thought I don't want to take precious time away from our Constantine, that could be used on others....but since the question is out there, I have the same..... 
I had a CT in April on a brand new CT scanner showing a 5 mm lesion on the liver - to small to categorize per radiologist, who did not know I'm a cancer patient because PCP did not mention, then in July a CT on a 9 yr old CT scanner which didn't show it, radiologist said it maybe gone, maybe not due to difference in technique (whatever that means).
I asked for clarification and was suppose to make an appointment to get a triple face liver scan (or something like that...)
I chickened out.
a. onc wasn't concerned, he never is... b. I am afraid of results c. I am afraid of the (possible needless) radiation and consequences (even though if negative, I am happy, but onc wasn't concerned and it was usesless extra radiation, so I should have left it alone....arggghhhh....)
I really don't know what to do, my referal expired, was just renewed and I am suppose to make that appointment in a couple of weeks...
(There also was some news of a patient who got multiple times the radiation that he needed with a CT in some hospital, how the heck can that happen???)
I know the benefit outweighs the risk....that is usually what we say....arrggghhhh....
Would love to hear what you think Constantine 
__________________ ~ There are lies, damned lies and statistics ~ |
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edge Chief of Research
Registered: 10/28/07
Posts: 586
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Reply with quote | #3 |
ETF, Calico: It is important to first establish once and for all that the recent arguments about potentially adverse impact of radiological monitoring (scans) is about excess or superfluous imaging, not well-grounded and motivated imaging: the early detection of cancer recurrence or metastasis cannot by any stretch be viewed as excess, or superfluous. The benefit of the scan, in effectively diagnosing early malignant development, metastasis or recurrence, as well as in assisting to modulate cancer care more effectively, typically outweighs any potential risk from the radiation. So for well-motivated radiological monitoring, an individual tends to derive much greater benefit than adverse risk, and it is highly probable that there are higher risks associated with not conducting appropriate and motivated radiological disease monitoring, which can compromise critical treatment decisions, or miss them altogether, significantly adversely effecting patient outcome and QoL. Furthermore delayed detection can not only compromise outcome, but also likelihood of recurrence: risk of recurrence is influenced by the timeliness of detection, so detection delays are associated with a greater chance of relapsed or recurrent disease, minimized if the disease (primary, relapsed/recurrent, or metastatic) is detected earlier, with earlier therapy being associated with better patient outcome. And even if one argues, as does recently Mohammad Jahanzeb from the University of Tennessee that "finding metastatic disease early does not increase survival" (NCCN 2008 Annual Conference in the Use of Imaging in the Management of Patients with Cancer) - even if true, and Dr. Jahanzeb has not shown it to be so - it comes down to the easy dilemma of whether, assuming that survival is not increased according to this view, you want to live the same say 5 or 10 years with a significantly higher chance of one or more recurrences, or a significantly lower one. I cannot believe, and have never encountered, any women who would not opt for lowering recurrence risk. Numerous studies have consistently showed that there is virtually nothing a cancer patient fears more than a disease recurrence. This is what is profoundly missed by many oncologists who weigh oncotherapy regimens based predominantly as to whether they effect a significant benefit to overall survival (OS), deprecating regimens which only improve progression-free survival (PFS) but do not alter OS, and arguing against bothering to deploy those since no survival benefit accrues. But this is disconnected from patient reality: if the no-therapy option is known to provide a median of 5 year survival, while regimen X yields the same, the correct response is not "why bother to subject the patient to therapy that fails to gain any survival benefit?", but rather that if regimen X still fails to improve OS, but does improve PFS, then there is indeed a large benefit that matters greatly to the patient, since an improvement in PFS entails a lower risk of recurrence, and even though you may statistically live the same 5 years whether treated or not, as I always say, the quality of the journey matters quite a deal - most patient would prefer to live out their 5 years without recurrence than with it, and with the associated trials and tribulations of another round or more of cancer treatment and treatment-related adverse effects and compromise to QoL. So yes the regimen may not gain you any extra years of survival, but the same journey is certain to be "more easy passing". In parallel, late or missed detection of relapsed/recurrent disease or metastatic spread maximizes the likelihood that the journey will not be easy passing, so interval scanning, whether yearly, bi-annually, or every quarter matters a great deal indeed. As the always wise David Ettinger at Johns Hopkins recently observed, "If a patient 20 years from now is suffering the consequences of radiation, I think that patient should be pretty happy. They didn't die of cancer", a sentiment in agreement with that of the eminent John Boone, Chairman of the Science Council of the AAPM (American Association of Physicists in Medicine (AAPM) who noted that "CT scans are critical for guiding the treatment of people . . . diagnosed with cancer", and with former AAPM president Richard Morin who also noted that "For an appropriately ordered CT examination, an individual derives much greater benefit than risk . . . There are likely higher risks associated with failing to have [such] a needed medical test, as the correct diagnosis or treatment decision could be delayed or missed." Now, from my point of view, what can be done positively, is to optimize and personalize the interval: so for me, if I am dealing with an indolent, low-grade, strongly endocrine-positive tumor burden in an otherwise prognostically favorable context, I would consider a longer imaging interval (every 6 months or yearly), while if I am dealing with a high-grade aggressive tumor in a prognostically compromised advanced disease setting, say of triple negative breast cancer, IBC, or HER2-positive disease, I would favor a short interval (3 months to no more than six months). The judgment of optimal interval therefore should be tailored to the disease setting, weighing in histopathology, clinical treatment history, tumor biology, and other known or knowable risk and prognostic factors. Similarly, the time-stage of the interval would matter to me: if a triple negative patient were 6 or 7 years out post-diagnosis, I might entertain 6 month scanning intervals, while if disease free at over 8 years out, I would consider yearly but I would be riveted to the progress of tumor markers to compensate for the longer interval, while in still another case of triple negative disease within the first 3 years post-Dx, I would favor aggressive dual-monitoring of both tumor biomarkers and radiological monitoring at short 3 month bursts. We serve the patient best by optimizing as well as individualizing disease monitoring, and ultimately (1) it is always a risk/benefit weighing that must critically inform the decision as I sketched out above, and (2) the final decision is the patient's, whether alone or in consultation with their oncology professionals. These are always deeply personal decisions and much that is not science, or beyond or above science, necessarily plays a role and cannot be discounted or dismissed.
Constantine Kaniklidis Breast Cancer Watch edge@evidencewatch.com |
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Calico

lifetime member
Registered: 03/16/08
Posts: 1,091
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Reply with quote | #4 | Thank you Constantine, I will always appreciate your thorough explanation.
One reason I also stick my head in the sand is that I want to believe there is nothing to see on my liver. They did see my old lung nodule at the same size, 5-6 mm. Why would they not be able to see the liver thingy at 5 mm....because it's gone, right??
Geeminichristmas....I so need a kick!!!  Maybe I should be in business coming up with excuses.....wait...I am!!!  __________________ ~ There are lies, damned lies and statistics ~ |
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Indigoblue

Queen Blue Sky & Golden Light
Registered: 09/08/07
Posts: 1,077
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Reply with quote | #5 |
Thank you, Constantine, Calico, and ETF.
This is a double-trouble topic regarding anyone who has experienced Radiation Treatments for Cancer. I was never given a list of "bewares", or told to avoid CAT Scans, PET Scans, MRI'S, X-rays, or the sunshine between 10 a.m. and 2 p.m. Are we supposed to figure this nonsense out for ourselves? Are "all physicians" aware of the dangers? I always ask, jokingly, "Will I glow in the dark after having radio-active crud injected, along with being exposed to high levels of radiation...Geiger counter, please?" I think I may purchase one, just to see if my hunch is right. Has anyone ever taken a Geiger Counter into a Radiation or X-ray Department, usually located in a basement or an area (seems like), miles away?
The generic response from the Radiation Technicians is always..."perfectly safe"...what about people with asthma, broken bones, head injuries? This stuff, radiation, is it permanently "there", in our tissues, organs, etc.?
I am uncertain about my current Oncologist's negligence in providing scans of any kind. He knows more than he's saying, and perhaps agrees with Dr. Mohammad Jahanzeb, why bother with anyone who is likely going to drop dead, anyway? Sometimes, after all, the tests, treatment, and amateur foolery in giving hope & treatments while realistically knowing there is nothing ... is truly worse than the disease...Cancer, Breast Cancer...
Personally, at this moment, I think the cancer is everywhere, but no tests have been performed to determine if it "is or isn't"; not even a blood test...makes me feel a little suspicious, that this world-renowned Oncologist in Triple Negative Disease, particularly, definitely knows a heck of a lot more than he is willing to tell...me, his patient, who is currently annoyed and impatient...at first thinking, maybe he was protecting me from radio-active rays...ha, ha, ha! If I die, it won't affect the ratio or data on the Clinical Trials...it's all about configuring the end results of these so-called Clinical Trials...isn't it? "so-what? " regarding the uncensored idiots like me, and "why bother?" giving hope or testing for metastasis, when a patient is technically "doomed"? Sally sells seashells by the seashore...and doesn't care if they are toxic...
A similar incident, regarding "radio-active" Cat Scan news, happened ten years ago in the hospital where I previously had my surgery for Breast Cancer. Ultimately, it was beneficial to the patients, giving us safety precautions at that facility, to protect us from failures in the system. I wonder, really, how often we are given mega-watt doses of radiation, by tom-foolery technicians who don't know anything about the machines they are using...spooky, scary, and frightening...Happy Halloween...
I've been avoiding this topic, as it upsets me to the infinite ends that have no ends, or beginnings...a great enigma. Do, no do, or doo-doo? What is the right thing to do? Tell, no-tell, or William Tell (straight shooter ~ aim that arrow right between thine eyes)???
Least of all, tell the patient the TRUTH...the lies are unforgivable.
Love, Indi __________________ Thank you, Angels ~ Here, Now, and Infinately Blessed |
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ShirleyHughes Wild Woman
Registered: 02/24/08
Posts: 167
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Reply with quote | #6 | I never wanted to be scanned regularly. My onc doesn't scan unless one has symptoms. Well, I got scanned. I was complaining about my LE arm. She (my onc) decided to do a CT scan because I had a large tumor and positive nodes. She was being quite cautious. Before leaving the clinic (I go to Duke..a little over two hour drive when dh is driving) she also wanted me to have some blood work done. I did that, but wished I had kept my mouth shut and not complained about my arm. I get home and there's a message on my answering machine from the onc. Heck, when the doc calls back in a couple of hours and says to call her back because she wanted to go over my blood work with me, ya start sweating...LOL My calcium was a bit elevated. So, she threw in a bone scan and a parathyroid test. I scheduled the scans and blood work for about two weeks after seeing her. Fast forward. Saw the onc the same day as scans and blood work. She doesn't like to wait..neither do I. The parathyroid was fine. My calcium had gone back to normal BUT the CT scan said, highly suspicious for metastatic disease...recommended a bone scan. I believe they said the L1. The bone scan said, very concerning for metastatic disease. I believe that one said T12. We saw the onc. She was surprised and really didn't seem too worried about it. She said it was unusual to see only one spot. We could do a biopsy, but I declined. So, we decided to wait for three months and redo the CT scan. THEN, after coming home and reading the report, chewing on it for a day or so AND finally digesting it I decided I wanted a biopsy. A neuroradiologist did the biopsy on L1. I returned in three days to see my onc. Yep, cancer cells. I need to call her and ask her about the biology (or pathology or whatever you call it) of the tumor..is it still er/pr+ and Her2-. I had no pain. She wasn't looking for this. She was looking for something to do with my....I don't know. Something to do with the way I felt under and around my arm. She again said she was surprised. She said, You knew. I said, Yes. She said, Sometimes we have a sixth sense. Now I have to have another CT scan in three months. I have changed from Arimidex to Aromasin. That's how we're treating it for now. Doing scans all the time would drive me crazy. DARN! I guess I'll be doing scans all the time now. Crap! I wasn't going to tell very many people. But here I am posting about it. I've accepted it (I guess). I haven't really freaked out YET. I think I've said I'm stage IV perhaps once. I do not like that label. By catching this early (I guess it's early) I don't know if it will make any difference. But, according to you, Edge, it may. |
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Calico

lifetime member
Registered: 03/16/08
Posts: 1,091
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Reply with quote | #7 | Awwww....Shirley, I am so very sorry to hear that!!! Glad it is early!! Are you considering Zometa at all?? It got such good reviews!
__________________ ~ There are lies, damned lies and statistics ~ |
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ShirleyHughes Wild Woman
Registered: 02/24/08
Posts: 167
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Reply with quote | #8 |
Calico, I'm not sure what all we're going to do. This was so unexpected that my "thinker" wasn't thinking. I went for my 6 month visit, complained about my arm then............you know the reast of the story. I never walked into the examining room thinking I was going to end up with a CT and bone scan. |
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nosurrender

Benevolent Dictator
Registered: 09/07/07
Posts: 5,019
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Reply with quote | #9 | (((((((((((((SHIRLEY!!!!))))))))))))))))) Oh Sweetheart, I am so sorry! If you only have it in a couple of spots that means they caught it really early. That is GOOD. Also, you can go on Zometa to treat bone mets along with the Aromasin. Remember, bone mets can be made stable and even disappear.
I am so upset you have to go through this. I remember how cautious your onc was and had you do xeloda wasn't it? We did the same regimen if I recall.
Is there anything I can do for you? Please, do not hesitate to ask. WE ARE HERE FOR YOU!!!
love you g
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ShirleyHughes Wild Woman
Registered: 02/24/08
Posts: 167
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Reply with quote | #10 | I went back and read about Calico's journey with her leftover ovary, estrogen too high...my goodness...what a mess! Gina, I believe, according to my onc, it's in one place. The CT scan said L1 and bone scan said T12. I asked her why she considered it to be only in one place...she told me, but I can't remember. I'm not as smart as Calico! I am so far doing fine. I was glad to see that Constantine thinks getting all crazy (my words) is a bad thing to do. I NEVER wanted to fact his again..so I'm not...my head is buried deep in the sand. I refuse to call myself, "stage IV" or call that bugger "mets." LOL It's much more fun that way. Yes, I did Xeloda. However, if you remember, the onc I now have said I did not need to do Xeloda. Doing Arimidex would have been enough. That was said after my onc left and she became my new onc. Who knows with this crazy disease. Thanks for having this very informative website. As we all know, Constantine is a blessing.  Shirley |
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nosurrender

Benevolent Dictator
Registered: 09/07/07
Posts: 5,019
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Reply with quote | #11 | Shirley, I think there should be a Stage 5 because so many women manage stage 4 so well and go on with their lives. But I am with you. You have a spot on a vertabrea ( can't spell it!) and that's it. Isn't T12 next to L1? Maybe that is where the confusion is.
We got your back babe!
love g
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ShirleyHughes Wild Woman
Registered: 02/24/08
Posts: 167
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Reply with quote | #12 | HaHa. You must think I'm up here on my puter just waiting for emails or replies. I just came up to check my email before I shut this thing down. Yep, we'll have to introduce a stage V. I'll change that from "we'll" to "I'll." Lets keep YOU where YOU are. I think I mentioned sometime back that I didn't want to take a bone building drug i.e. Zometa for one. Now I may not have a choice. I need to get my bone density report from the radiology clinic that I went to. They said I had osteopenia in my hips..didn't say anything about the spine. According to my bloodwork that the onc did my D level was 62. WTH? I'm taking 3000 IUs, but thinking to changing to 4000. I found a D with vitamin K-2. The brand is Now Foods from iherb. I've been reading where K-2 is important for our bones (as is other nutrients). I don't believe K-2 is hard to get in a diet if I read the info correctly. I also am changing my CoQ10 to ubiquinol instead of the ubiquinone form. Or I may take both forms. I'm still taking Curcumin andGreen Tea. Some days I forget. One thing I know...I'm tired of stuffing capsules down my throat several times a day. It's quite a tricky situation. |
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Indigoblue

Queen Blue Sky & Golden Light
Registered: 09/08/07
Posts: 1,077
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Reply with quote | #13 | Shirley, oh, ((((Shirley))),
Scans...doctors...Oncology...and waiting, wondering about pain, told we are NED, and how long would it have been had you not mentioned the LE problems...and what about the LE, anyway?
I was recalling back in 2005, when I first arrived on the Chat Lines, there was a Sherlock and a Watson...being a life-long fan of Sherlock Holmes, I felt safe, and you were there to console me. Do you remember being there for me? You and Gina were like two lifeboats, toggling my sinking body from the wreckage of fear, panic, and drowning.
I have to think about your news, and can't think about those absurd stages, grades, and categories; who ever dreamed up that rediculous scale, did it to keep patients from questioning thier diagnosis, prognosis and future treatment plans. Forgive the skepticism, please, The "system" simply annoys the heck out of me.
It's all we have, I guess...at least there "is" a system, instead of um, ohhh, and hm-mm...
Prayers, faerie kisses, and gentle hugs, Shirley...if you think of anything you need, please don't hesitate to ask...if there is a will, there is a way.
Love, Indi __________________ Thank you, Angels ~ Here, Now, and Infinately Blessed |
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nosurrender

Benevolent Dictator
Registered: 09/07/07
Posts: 5,019
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Reply with quote | #14 | Indi, you are such a sweetie.
Shirley, if you go on the zometa, don't fret about it... it isn't bad. Flu like for a couple of days and then it is gone. no hair loss or tummy stuff.
We are here and hear! love g
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ShirleyHughes Wild Woman
Registered: 02/24/08
Posts: 167
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Reply with quote | #15 | I'm ashamed of myself. I have procrastinated and have not posted in a timely manner. My bad! Indi, you've got me confused. You speak so kindly of Sherlock...that wasn't me (I'm just plain ole Shirley), but I sure wish it was...LOL I've never used the chat lines..only the forum. Gina, I haven't talked to the onc about Zometa yet. Well, we sort of did when I found out I had osteopenia of the hip and she offered Zometa and I said NO..LOL My problem with it is the fear of ONJ. I know the benefits outweigh the risks. I need to have a wisdom tooth extracted. Plus, if I went on Zometa I have another "iffy" tooth under a crown that may have to come out and I would have to make that decision to go ahead a do it before going on Zometa. I've had dental issues and it scars the heck out of me. I've been reading about the studies going on about adding estrogen in an attempt to, in my words, confuse the body after AIs fail. That's another topic I need to discuss with my onc. Thank you all for your kind words. I have yet to "formally" announce my new dx at BCO. Still sticking my head in the sand...I love denial land. |
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nosurrender

Benevolent Dictator
Registered: 09/07/07
Posts: 5,019
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Reply with quote | #16 | Shirley! I have been worried about you! THANK YOU for checking in!
Have your AIs officially failed? I think you have to be further along to give that a try. At least, that was the impression I got at the oncology conference I went to.
Get your teeth worked on, then start the Zometa. Get what you need done BEFORE and it should be ok.
Please don't be a stranger.... we have known each other too long and I care about what happens to you!! love g
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ShirleyHughes Wild Woman
Registered: 02/24/08
Posts: 167
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Reply with quote | #17 | I'm sorry. I am ashamed of myself.  Yes, my Arimidex stopped working, but now I'm on Aromasin. I think I posted that. She said that Femara was very much like Arimidex and that it would not be an option. I will have a CT scan January 26...YIPPEEEE! I hate tests! At least I have my blood work, scan and then see her all in the same day. No waiting for the results. I don't know if she does for patients who have to travel, or for everyone. She said she does not like to wait. Neither do I! At the conference did they discuss giving estrogen to us who's AI had failed? What I read was you first have a PET scan. Then you take the estrogen. Then, 24 hours later you have another PET scan. If the scan really lights the chances of this working is good. Have you seen the study or read anything about it. It's quite interesting. Oh, and if the estrogen indeed worked and then progression started again you would go back on the AI. I'm probably not making much sense. It's very, very late. I'm going nite nite.  I will check in I promise! |
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