the importance of being one's own advocate

That was a great article.  I questioned my radiologist in 2009 when he was ordering multiple PET scans about the dangers of radiation from the PET scans.  He assured me there was little reason to be concerned.  I had read there was risk of excess radiation exposure from multiple scans.  Shortly after that conversation my insurance company, Aetna started denying scan procedures.  I thought Aetna was just trying to cut costs but it looks like they knew more than the doctor.

Mike 

sephie said:

lach, thx

i am doomed..... of course, i was told up front by MD Anderson  that the radiation could cause cancer in later years...... i have had lots of CT scans but am turning it down for my next visit in March.... i have had 4 years worth of these.... that is enough ...probably too much.......i am not living in fear, just know the reality and if it shows up later, i will deal with it accordingly......thx for info......i had discussed this with radiation team last sept.....       sephie

I hope we are not doomed, but like you I have also had many scans during the first few years. At my 3 year follow-up last month my doctor scheduled one again for in 1 year, but does seem aware of the risk and said we can change or cancel, but put in the order for now. He often ends with something like, "whatever you're comfortable with" which on one hand is nice, but also as LaCh said, leaves me to do some research and advocate for myself.

I often find myself on the fence. It was at my 1 year follow-up Pet scan that they found a rare secretory carcinoma of the breast. (breast cancer) This is a slow growing cancer and estimated that I had it for 10 years. It often does not present on mammograms until late stage. Mine was stage 2 and actually two tumors. Treatment was a double mastectomy, and daily med for 7 plus years. I am doing well, but if found too much later the outcome may have been MUCH different.

So, I look at that scan as life-saving......yet, what may they be causing next????

Be well.

Katheryn

LaCh said:

This is the most gratifying response to any post I've put up on this forum. All I wanted was to get people thinking, questioning and not simply following. In the end, what one chooses to do is less important than having come to that decision by way of all the information available. For my part, I pushed back from the first CT I was given to stage the thing. I came to the situation with a deep seated suspicion about the diagnostics, treatments, and reasons behind all, as well as the money-making engine that benefitted from any test or treatment that I had,  the AMA, the pharmaceutical industry, the scanner industry and so on, ad nauseum. But I don't advocate such a suspicious approach, nor do I advocate against it. What I advocate for are informed decisions, and everyone has the right to decide for him or herself what he or she feels is in their best interests, with information. What I advocate above all else is not turning the reins over to someone else, not with cancer or anything else. We're all given the tools that we need to guide our own lives. Why turn it over to someone else? I'm very glad that my post has achieved what I hoped it would. A stroke of the chin, eyes looking upward and thinking, "Hmm, now hold on just a second, lemme think about this..."

 

 

Lol! 

mdoss99 said:

CT scans are safe

This article does not represent current state of knowledge in this field, and makes many misleading statements. I have presented a line-by-line criticism of the article in my blog which is available at: 

 

http://are-we-really-giving-ourselves-cancer.blogspot.com/ 

 

CT scans are safe, and the present concerns regarding radiation dose from CT scans are not justified by any evidence.

Thank you for posting the link to your responses regarding the article that appeared in the NY Times recently regarding radiation exposure and CT scans.

I am almost 6 years post-diagnosis for anal cancer that was staged on the border between a 1 and a 2, tumor size was 2cm.  I underwent 6 weeks of radiation treatment for a total of 54 gys (which is appropriate for my type and stage of cancer) 1.8 fractions for 30 days, along with 2 rounds of chemo (Mitomycin on days 1 & 29, 5FU on days 1-4 and days 29-32 via infusion pump).  Prior to treatment, I had one PET/CT for staing purposes.  Since treatment ended, I have had numerous (probably at least 8) PET or PET/CT scans and a few CT scans for follow-up purposes.  I had no lymph node involvement or mets when initially diagnosed and none of my follow-up scans have shown any suspicions or evidence of recurrence or mets.  My last CT was in June 2013 and I am scheduled for another in June 2014.  I have increasing concern over the amount of radiation to which I've been exposed.  However, my medical oncologist has insisted that these follow-up CT scans pose little or no risk and that my mega dose of radiation occurred during treatment.  I also have a close friend who is a radiologist at the hospital where all of my scans have been performed and he is of the same opinion as my medical oncologist.  Still, I continue to question the risk of all of these scans and my radiation exposure.  I have relied on the guidelines for follow-up of my type of cancer put out by the National Comprehensive Cancer Network and there is no recommendation by that organization to do follow-up scans except in cases of residual tumor or evidence of recurrence.  Still, my medical oncologists insists on these scans.  I am quite conflicted by all of this, I must admit.  The scans do give me a great bit of peace of mind.  However, I do not wish to develop another cancer sometime in the future that is felt to be caused by over-exposure to radiation.  I truly believe that I am not the only person on this board or elsewhere who is in the same situation.

Thank you again for posting the link. 

mxperry220 said:

Your Opinion

While I appreciate your comments.  It seems your comments and the blog are one in the same person's opinion, i.e the comment and blog link are the same person..  This seems rather biased.

Mike

Normally, I would not respond to the above comment posted by someone who identifies themself as an expert in issues of radiation exposure.  Before posting, I looked Dr. Doss up and if he is one and the same, he is educated in this field.  All that said, my main point in posting was to get across the fact that there are differing opinions on this matter among the medical professionals, leaving the patient wondering what to do.  While I don't wish to miss a potential recurrence or metastases of my cancer or anything else that might show up on a scan, I also don't wish to find out that later on, I have another cancer because of radiation exposure.  Radiation is definitely a double-edged sword.   

LaCh said:

fear-driven choices and radiation

Dr Doss's arguments were summarily uncompelling and unconvincing for me, and my opinion about the dangers of radiation exposure remain unchanged. I think that when decisions are made from fear (fear of cancer recurrance vs fear of radiation exposure, which, at it's heart, is really the same fear; cancer) combined with conflicting evidence (diagnostic radiation is bad for you/ diagnostic radiation isn't so bad for you) one finds oneself in an agony of indecision. If the stakes weren't a little different, it would be the same arguments as the good eggs/bad eggs debate, where eating them is dangerous to one's health this week, and not so bad the week after, and then, we're back to the dangers of eating eggs. I can only speak to my own experience of this situation and don't presume to speak for anyone else. I don't fear the cancer's return; it's gone and I expect it to remain so. I don't doubt the dangers  of diagnostic radiation (when you're told to avoid other people for 7 hours, the half-life of the radioactive dye in a radioactive CT, my thinking is, "How is this ok for ME?"  And also, "if this is all so safe [meaning the radiation], why am I locked behind a door of lead a meter thick during treatments, in a room that's under ground level [The answer: Because radiation is dangerous.] I'm convinced that in 100 years' time or 150 years' time, or whatever, people will look back at what was done to treat  cancer and say, "They did WHAT? With WHAT?" This treatment has so much collateral damage that the assessment of whether or not the trade-off is worth is very varied.  I'm clear about what I expect from this tumor; nothing, it's gone. and I'm equally clear on what I think about diagnostic (and theraputic) radiation. Annual radiation exposure among health workers is limited by law; exceed that amount and you're required to stay away from the source of the radiation for a period of time. Rads add up; their effect is cumulative. How can it not be so for everyone? It is. So that's how I came to my decisions on the matter, and haven't given it a second thought since. CT scans are completely off the the table for me and I have no doubts or reservations in making that decision.   

I find all this interesting and believe that we have all had misgivings about radiation from CT scans and at one time or another being in front of the microwave or the color tv for both substantiated and unsubstantiated reasons. 

I do not believe we can presume the entire medical field is there with diagnostic testing and treatments primarily to take advantage of us and get our money.  Seeing all the demons in the medical field so keenly but not so keenly the way the disease of cancer works presuming that because it is gone it won't come back, seems to be off base. It is good you can put the cancer out of your mind, but try and make sure it's not out of the same fear that you believe drives us to face the machines.

I just had another CT scan for the spots on my lungs. It was great to see that this scan was better than the last one. This was my second case of actual cancer (cervical 1975, anal 2011). These cancers weren't caused by radiation. But very likely caused by the HPV virus which can attack again in our breasts, in our esophagus, in our lungs, in our throats, necks, mouths . . . . 

What I am saying is that the enemy isn't outside us, it's inside. I am not as afraid of being dead of cancer as dying from it. At the stage I was when diagnosed with anal cancer, and due to the invasive tumor's location on the anus and in the lymph nodes which caused lymphedema, the pain from it was almost unbearable. Cancer hurts like hell. As bad as the treatment and the side affects are, cancer is much worse.

I believe we have to make decisions that are in the best interest for our short and long term health with the help of the most competent medical team we can find. I doubt many of us here follow "blindly" and we all have thought out our decisions intelligently. Blind trust is not good, but healthy trust is a good thing. I feel blessed to receive the benefits of the many fine doctors and physical therapists doing their best to help treat cancer patients here in NYC. 

May God bless you and thanks for your lively contribution to this forum.

Sincerely,

Sandy

Phoebesnow said:

Cancer radiation and cancer again

I think it is important that we all know the facts.  But are these facts or hypothesis?  I believe in the scans.  I believe they could potentially cause damage.  I believe that cancer comes back, almost always.  Maybe not in the same spot but somewhere else, that same cancer will show up.  It will take time, hopefully a long time.  I had cervical dysplasia grade 5 in my twenties.  I believe that it is related to the anal cancer.  My aunt had cervical cancer in her forties, came back in her breast in her seventies and then her stomach in her 80's.  She lived till 86.  I do not know anyone who has beaten cancer, stayed ahead of it, lived a good life but never goes away.  Maybe stage 1's? Do not be a fool!

 

Today another basal cell diagnosis.  I am taking the least invasive measures scraping and burning 85%cure.  Why didn't the 5 FU kill it?  My options were 4 weeks rads(5 FU'S to that!), 5FU TOPICL FOREVER (it would feel like forever,16 week minimum) or surgery.

 

What is important is that we get all the information and then make our choices.

 

I thank you LACH for bringing up this issue.

I do feel at the present time that my cancer is gone or, if still present, undetectable by any diagnostic tools currently available to me.  However, I will never use the term "cancer free" and I always cringe when I see someone use that term on the sites I visit.  I am not a particularly superstitious person, but I think somehow using that term to describe myself or my current status is just asking for bad karma.  One of my friends whose husband has been dealing with colon cancer recurrences for several years told me once that "cancer always comes back."  While it shook me to hear that, I realized that that's probably true if a cancer survivor is fortunate enough (or unfortunate enough, however you look at it) to live long enough and not die of some other cause in the meantime.  We all handle life in the post-treatment phase in different ways and I wish I could be as confident as at least one person on this board to say that my cancer is gone.  However, I cannot.  It's my nature.  I'm not a worry-wart, so to speak, but I do believe that sh*t happens and know that I am not exempt from that.

I also recognize the fact that my doctors, all of them, were not running me through the scan machine every 6 months just to rack up revenue.  It was not scanning for dollars, in my opinion, although I'm sure some would disagree.  I received and continue to receive excellent care throughout my treatment period and follow-up.  I have had some anger for having had cancer in the first place, but I certainly would not harbor any anger towards the doctors who gave me the care that has allowed me to be here today and hopefully for many todays in the future.

LaCh said:

sandy?

Hi Sandy,

I'm not sure who your post was addressed to, but since you cited some of my comments, I think it was me.  I thank you for your post, but I think that you might have misunderstood some of what I said. Your comment <What I am saying is that the enemy isn't outside us, it's inside. I am not as afraid of being dead of cancer as dying from it. At the stage I was when diagnosed with anal cancer, and due to the invasive tumor's location on the anus and in the lymph nodes which caused lymphedema, the pain from it was almost unbearable. Cancer hurts like hell. As bad as the treatment and the side affects are, cancer is much worse.> I don't see any aspets of cancer, or the tumor that I had, as the enemy, or "an" enemy, nor any part of the experience as the enemy. I had a problem to deal with and I dealt with it, but the connotation of "enemy" never occured to me. Things happen. Disease happens. Life happens.  

I don't fear death and don't fear dying of cancer. Most deaths are difficult and painful; cancer is but one painful death, and yes, I've been at the sides of both my parents' deathbeds as well as other family members', in addition to the love of my life. Dying, in general, isn't an easy or pain-free process. But to think about what might or might not happen sometime in the indefinite future simply isn't how my thought processes work and I don't see the wisdom in cultivating it. While I hope not to die now, I don't fear it and while I hope that when my time comes, it's a pain-free death, I don't expect that it will be because most deaths aren't. But I'm not going to worry about it now... If I did, I'd be spending my healthy years fearing my unhealthy years. This is what new age-y people would call living in the moment, or failing to live in the moment.  I'll deal with my death, painful or otherwise, when it comes.

You said <Seeing all the demons in the medical field so keenly but not so keenly the way the disease of cancer works presuming that because it is gone it won't come back, seems to be off base. It is good you can put the cancer out of your mind, but try and make sure it's not out of the same fear that you believe drives us to face the machines.> Fear is neither on nor off base, neither good nor bad. A person either feels it or he doesn't. As for the machines, I don't fear them, I see them as a crude method (yet state of the art as we know it today) to treat cancer, but one that carries a good deal of risk. Too high for me. I weighed the advantages and disadvantages with regard to exposing myself to more radiation and saw no advantage to it and several disadvantages. Fear in that decision played no role. 

I chose the word "fear" from as taken from your post, which I won't take time to quote. The word in the sense I was using it really was meant to refer to a respect for all aspects of our lives, including health, sickness and death. We all make the effort here to make our decisions here eyes wide open. Which is why we always read your posts and open your links.

Your posts are lively and informative but sometimes condescending. Thank you for your participation. As you can see, I speak up too and that is what is so great about this board.

Sincerely,

Sandy