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Afraid of RAI

warriormum
Posts: 20
Joined: Mar 2011

Yep, me again *waves*. Please bear with me as I'm kind of using this as a place to get my anxieties out in a supportive environment. So my second surgery is over and the dr tells me there was no evidence of malignancy in the right lobe which is great. i'm waiting to hear from the Nuclear Medicine people to have the RAI, and this is the issue: I don't want the RAI, but I also want to be around for a long time and not have my life cut short by cancer, yet how do I know that the RAI won't turn out to cause bladder cancer or some other cancer that then kills me? As a bit of background I'm a bit of a health nut, I gave birth at home as I generally dislike unecessary medical intervention, every personal product I use from toothpaste to soap to tampons to lipstick is natural and organic, I don't even clean with chemicals....yet I'm prepared to readily ingest a radioactive substance?? If you've read this far you're probably thinking, whoa this chick is nuts! I swear I'm not some weird nutty hippy (ok maybe just a little), but it;s just the way I am. Ok so then I think on the other side of this I've worked so hard to make sure everything I put on my body and in my mouth (same for the kids)has been as natural as possible and guess what...I still got cancer. I've lost count of the times that I've told friends and family off for chronic drinking and smoking "cancer sticks", as I call them, yet they are all as healthy as a horse and *I* got the cancer??!! How is that fair?I feel like an idiot for telling my mother of for drinking diet soft drinks by the gallon because of the link of artificial sweetners and cancer.....yet here I am with cancer.

Weird ramble that I guess has no point. Cancer makes no sense. And yes I will have the RAI as my cancer has already showed vascular invasion but gee it will go against everything I believe in. Thanks for listening to the weird Australian chick and giving me a place to purge.

alapah's picture
alapah
Posts: 255
Joined: Oct 2009

it certainly isn't natural to welcome a radioactive substance coursing through your body. on the other hand, that 'silver bullet' treatment for this particular kind of cancer is kind of amazing. i wasn't keen on it either but, as you say, the alternative is less appealing. i don't know the odds, but I believe the chances of a secondary cancer resulting from RAI treatment is small to nil. i have had external beam radiation which is far worse - plus quite a few CTs and two PET scans. My docs try to keep the amount of exposure down to a minimum but sometimes these things are needed for my overall benefit.

it is a crazy truth about the randomness of cancer, despite healthy lifestyles, etc. but, in the end, we do for ourselves and live our lives as we feel best - what we find most rewarding, most appealing, most in keeping with our beliefs and desires. i am with you in feeling that it's a bummer healthy choices aren't more of a surety for a cancer free life. the day they figure out how to beat cancer before it even starts will be some great day! the more i deal with this, the more i have come to admire medical professionals and researchers.

oh, and absolutely feel free to vent, unload, ramble etc here. that's what this kind of site is all about.

warriormum
Posts: 20
Joined: Mar 2011

Alapah, thank you. I'm finding I'm swinging emotionally between being thankful this cancer is curable, to being angry I have it at all. Still just processing I guess, and assume these feelings will settle.

amorriso
Posts: 186
Joined: Oct 2010

Hi there: Ramble and vent away - you're not the only one with those thoughts. Trust me - I've looked at all my friends who smoke and drink and it makes me mad that I'm the one with cancer.

Dont be afraid of the RAI - I had it in november and need another one in May - I just picture it as the magic bullet for our cancer - and like you I want to around for a long long time.

Keep in touch

Andree

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Mum,

You're right. I've tried to be as careful as I can be. The thing with cancer, there are so many possible causes that it's impossible to keep yourself risk free. Sometimes it's nothing more than where you happen to live. Some areas have higher incidence rates than others, and sometimes it's the rural areas that are highest, which makes no sense. Sometimes your profession may put you at higher risk. I've spent much of my adult life earning a living sitting in front of a computer screen and even worse, much of my leisure time as well. It's possible the low-level radiation I've been bombarded with over the years has caused my cancer. Being older than most people here, I was around CRTs that probably emitted higher levels than the newer displays.

The weird thing about RAI therapy, Iodine-131 is a nuclear fission product. As we've all read in the news lately, it's in the spent fuel of nuclear reactors {Japan} and in fall out from nuclear bomb testing. So there are Iodine-131 atoms floating around out there that any one of us may have ingested years ago that caused our cancer {probably not, but who knows.} And yet, they are going to give us massive doses of Iodine-131 in order to cure us. I think I understand the science behind this, but it's still weird. It may be the only time in medicine where a substance in very small doses will make you sick while massive doses will cure you.

It's weird, confusing, exasperating ...

I can't imagine how anyone wouldn't be saying to themselves, "Why me?" and "This %^&%&*% sucks!" and "What have they done to me?" {I said that last one when ever I tried to move my head for weeks after my surgery.} Even when you know the answers intellectually, spiritually you're still at sea.

Alan

LBlackman
Posts: 113
Joined: Mar 2011

It's better to vent than keep it all in. I am six years out and am just learning about the LID diet most people go on before their yearly scans. My Dr. never told me about this and I just found out that the atkins diet I have been on could have masked the true results from my previous scans. I still have those emotions you are feeling, but I try to enjoy each day to the fullest and I know have known people who work out all the time, eat right, don't smoke and then they drop dead from a heart attack. It happens to people in their twenties. We just have to remember that each day is a present and tomorrow is not promised. Listen to your body and do as much research as you can. I wish you the best of luck and please feel free to vent anytime, we all need to do that. My Dr. also told me I was lucky to have thyroid cancer vs. another kind, I wonder how lucky she would feel with it?
Lynne

nasher
Posts: 507
Joined: Apr 2010

To be honest in full disclosure the doctors at nuclear medicine are supposed to give you a list of chances of what side effects as well as any other possible issues...

Remember radiation is in everything in small amounts. even completely natural and organic bananas have a small amount of naturally occurring radioactive potassium in them. yes its a very small amount but the super sensitive radiation detectors will detect the radiation from less than 1 pound of bananas.

Cement basements are also a large source of background radiation.
Flying in airplanes increased the radiation you get form background.

1) Be concerned and informed about the amount of radiation and what its exposure is to you
2) Be concerned about what you can do to minimize the radiation from yourself to your family and pets (in the states they give us a large list of do and do not’s for after radiation treatment)

Again I’m not saying any one thing is healthier than another I’m just saying a lot of the things cause cancer is twisted from the facts

--- Again from thyca---
If you go home immediately after a treatment dose, use the following guidelines regarding distance, time, and hygiene.

Minimize contact (less than 3 feet or 0.6 meter for more than 1 hour each day) with everyone for the first five days, and with small children or pregnant women for eight days.
Do not sit next to someone in an automobile for more than one hour.
Sleep in a separate room and use separate bath linen and launder these and underclothing separately for one week.
Wash your hands with soap and plenty of water every time you use the toilet.
Rinse the sink and tub thoroughly after using them.
Use separate eating utensils or disposable eating utensils. Wash eating utensils separately for one week. Do not prepare food for others.
Flush toilet 2-3 times after use for two weeks after discharge.
Males should sit when urinating to avoid splashing for one week.
Discuss with your doctor how long you should wait before starting a pregnancy after your treatment (usually at least two months for males and six months for females).
If you are breastfeeding, it should be discontinued, but can be resumed for subsequent childbirths.
----

I work with nuclear power in my day to day job
I knew exactly what I was getting and how much and how many times my exposure limit to nuclear power this RAI treatment was
I didn't "WANT" to take it either but the pro's outweighed the cons of treatment.

heck for 2 weeks after i couldn't go to my normal job cause i would have set the detectors off just by walking past them.

---

A side note on your rant... you found out you had cancer it does not mean all the others who smoke, drink, do other unhealthy things won’t get cancer (I HOPE NO ONE EVER DOSE)... the difference is that...

YOU know you have cancer the others may or may not have cancer.

oh also the link to artificial sweetener and cancer is off in its chances cause of the amount of artificial sweetener they had to give to the rats to give them cancer
according to http://www.cancer.gov/cancertopics/factsheet/Risk/artificial-sweeteners
---
Is there an association between artificial sweeteners and cancer?
Questions about artificial sweeteners and cancer arose when early studies showed that cyclamate in combination with saccharin caused bladder cancer in laboratory animals. However, results from subsequent carcinogenicity studies (studies that examine whether a substance can cause cancer) of these sweeteners have not provided clear evidence of an association with cancer in humans. Similarly, studies of other FDA-approved sweeteners have not demonstrated clear evidence of an association with cancer in humans.

---
the amount of artificial sweetener that was given to the test rats was about that of 1,000 cans of diet soda per day for your entire life.

And here I go again ranting and going way to long for a simple response.

Craig

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Mum,

Keep being a warrior. If you don't kill this cancer, you won't have a chance at killing any others that come along, if they come at all. I have had two doses of RAI in six months due to metastasis. I fought cancer for fifteen months straight and I was tired! No one knows why I got Thyroid cancer. The only possible conclusion is that my mom was exposed to TCE when she was pregnant with me but I didn't develop symptoms until I was 41. She has Multiple Sclerosis. I also have an Auto Immune disease and a few birth defects which are unnoticeable to others.

I haven't lived the "cleanest" life however I have always been skeptical about Anti-bacterial products and their relation to the "super bug". I am not a hippy chick but I have tried to be sensible. I have done some research on my own about how cancer survives but most importantly "how" to kill it. It HATES oxygen. I have found homeopathic ways to increase my oxygen levels. Cancer thrives in an acidic environment. I try to avoid acidic foods and eat more foods with alkaline so that my body doesn't have to work so hard to balance it's pH level.

Like you, I have been a long time advocate of banning artificial sweetener's. The original maker of NutraSweet even tried to warn people of it's potential dangers, sold the recipe and rights soon after he created it. Huh? Sounds odd doesn't it? I used to drink Diet soda in large amounts as a teenager. Cancer also feeds on sugar, so where is the happy medium? I have given up sugar for the most part.

All in all, there is no real answers yet and there is really no way to know how or why cancer happens with each case. People who have never smoked get lung cancer. Soon you will just accept and move forward. RAI treatment isn't as dangerous as you think so don't worry too much. I have been cancer free for almost four months and I am grateful for every single day. My oncologist says that if I had not had the RAI I might be facing metastasis to the lungs. RAI is very successful at prevention of lung mets. Each time my recurrence was in the Lymph nodes and they are less likely to uptake the RAI.

I continue to learn and live and love my family as much as I can. I fight for cancer research and raise money for the American Cancer Society whenever possible. I try to be a pillar for those that know me. I have a strong faith in God. I have one daughter and she is so proud of how I fight and never give up.

I guess this wasn't so short after all. But, it was sweet (and not artificially!) Hang in there, you are going to be fine. You will come out stronger and smarter than you were before your cancer diagnosis. And........keep on venting!

Blessings and prayers your way,
Julie-SunnyAZ

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Warriormum,
I too was afraid when told I needed RAI. I have also tried to live a healthy organic(old hippie) life. Not always so succesful, but I try.
I did have RAI for my 2nd reoccurance with mets. I was told that now I need not worry any more. Sadly, I did have lots of side effects.
Well fast forward another 13 years, and it's back again. I went through tons of testing last winter and now it seems that I no longer take up the iodine. I have a small met in my lung, we are watching it for now. My options have almost dissapered. Very scary.
I now have to wait till the cancer grows large enough to remove and have external radiation and chemo.
Cancer is not a fair gift. I agree that so many who live an unhealthy life, never get cancer.
Okay, I'm done whinning.
Take care

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