Yesterday I was on to something

Yesterday morning I wrote about learning how many other cancer survivors are out there with second and third cancers. Then after going to the grocery store and gardening I needed to rest my back, I decided to read my latest issue of Cure Magazine. (A note about Cure, if you have/had cancer and don't read it you should. It explains new advances and information about cancer in easily understood language that doesn't talk down to you and covers real issues.)

Its latest issue covers three topics which are near and dear to my heart.

- Use of radioactive iodine in treating thyroid cancer particularly when treating those under 18. I was 19 so I think I can be included in this article considering my medical history. The article states: "Radioactive iodine should generally be prescribed for those at very high risk for recurrence or known to have microscopic residual disease and those with iodine-avid distant metastases,” the researchers wrote in The Journal of the National Comprehensive Cancer Network. However, “RAI should be considered in other patients only after carefully weighing the relative risks and benefits and the aggressiveness of the clinical presentation, because RAI may be associated with an increased risk for second malignancies and an increase in overall morbidity and mortality.”" Yoo hoo!! Are you talking about me?

- Thoughts on avoiding over treatment in cancer treatment - There is such a thing as too much of a good thing. "...a growing number of people—from patients and caregivers to doctors and researchers—concerned about the balance between the risks posed by cancer itself and the risks of treatment. Several recent studies have documented “overdiagnosis” or “overtreatment” of people with certain types of early, slow-growing or low-risk cancers or even precancerous lesions—many of them picked up with increasingly sensitive tests.". I think they are hinting at a theme here...

- Another article referring to over treatment and node removal in breast cancer treatment. "Now researchers have found that a select group of early-stage breast cancer patients may not need ALND (Axillary Lymph Node Dissection) even if one or two sentinel nodes contain tumor cells. Skipping ALND eliminates common side effects of the procedure, including painful and chronic swelling of the arm, known as lymphedema, and infection. Yet again, less is best." I hate this. I am in this category so maybe I was over treated and now have lymphedema and shoulder issues as a result. But I will stop thinking that because there is no sense in regretting the past.

To summarize, I had thyroid cancer and was treated with Radioactive Iodine which is now shown to cause other cancers when used on young patients. I had breast cancer and had on small metastasis in one lymph node and had the surgery that has caused more problems. I have to just think that I was treated according to the standards at the time and it can't be undone. Isn't the cancer roller coaster fun when these fun little emotional side trips are added in?

Its nice to know I am not alone

Back in the dark ages of the late 1970's through the early 1980's, there were approximately 10,000 cases of thyroid cancer annually in the US. More cases are in women than men and it did occur in teenagers as well as older adults. It included me in 1981. Its an isolating disease. I felt alone.

Then in 1984 I had a benign breast tumor. Then in May 2007 I had breast cancer. Then in December 2007, I had another benign breast tumor. Now it turns out, there are lots of people out there like me.

Finally there has been a study about people like me - 'Childhood Cancer Survivors At High Risk for Multiple Tumors as They Age'.

The Childhood Cancer Survivor study "was launched in 1994 to identify the challenges facing childhood cancer survivors and to develop new methods to ease or prevent late effects." Raising hand, 'yoo hoo - me too, me too!!!'. The study found that "1,382, or 9.6 percent, of survivors developed new tumors unrelated to their original cancers. About 30 percent of those survivors, 386 individuals, developed third tumors. Four or more tumors were found in 153 survivors in this study."

First they defined childhood cancers as age 20 and under. I was 19. They followed over 14,000 people who had had a childhood cancer, 70 percent had received radiation which has shown to increase the risk of later cancers. I did not have radiation but I did receive radioactive iodine. The study states "Female survivors whose childhood cancer treatment included radiation were among those at highest risk for later tumors, particularly breast tumors."

Additionally, "Risks were also associated with benign tumors. Investigators showed survivors whose second tumor was a non-melanoma skin cancer had a 1 in 5 chance of being diagnosed with another, more aggressive cancer within 15 years. The group included 485 survivors with either basal or squamous cell skin cancers. "These survivors are candidates for additional genetic evaluation to look for an underlying genetic propensity for tumor development or an inability to protect healthy cells against the harmful effects of radiation," Armstrong said."

Even though this focuses on skin cancers I find it interesting they want to have further studies on the high propensity for tumor growth.

I am not a medical person at all - just a patient (and because of my medical (mis)adventures, I can ace all the medical related Jeopardy categories). But I do find some comfort in the fact that there are more of us around. We need to have annual conferences with big parties to talk about life with cancer. Research oncologists could listen to us and learn more.

I am getting ahead of myself here but my point (and I need to have a point) is that more research is needed for this growing population on the results of the long term effects of cancer treatments, radiation in particular. What doesn't kill us, makes us stronger... but it may be our undoing in the end.

Radiation anyone?

In treatment for thyroid cancer, patients are often given a dose of radioactive iodine which will dissolve any thyroid cancer cells. But as you swallow radiation, it is then released from your body in its normal processes - sweat, saliva, urine - over the next few days. Now a days, patients are released from the hospital the same day and told to stay away from pregnant women and small children, sleep alone, and not share food or drink for a few days. Apparently before 1997 the NRC mandated hospital stays during radiation decay.

I don't remember this part. I don't recall being hospitalized for radiation. I think I was given radioactive iodine and sent home. My brain is a sieve but you would think I would remember that.

But the problem now a days, is patients who don't live near their hospital/place of treatment are then spending the night in a hotel while emitting radiation. Who knows who is going to stay in that bed next and get exposed to radiation? Who is going to clean the room and get exposed to radiation? (Between bed bug scares - which make my skin crawl - and things like potential radiation exposure that make me want to avoid hotels for ever.)

I don't think of radiation as being this really scary thing. I worked for a scientific instrumentation company which had many machines that use radiation as well as manufacturing systems for measuring different kinds of radiation. Any radioactive element has a half life which is how long it takes to decay. Some have a half life of 3 days and some of 3 million years. So somethings that were radioactive are no longer. I believe (in my non scientific brain and through reading posts like this read all the way down to the last one)that RAI is radioactive for a few weeks but you can expel it from your body sooner through its natural processes.

But it is a conundrum - if you get a treatment involving radiation, when can/should you be released into the general public? Are insurance companies again making unsafe decisions?