Progress in Breast Cancer Treatment Shows in Recurrence Rates

A new study looked at survival of moderate or advanced breast cancer patients between the 1980s and 2000s. During those two decades new treatments and advancements, greatly decreased the recurrence rates.

I read the attached and two areas were of great interest. During that time Herceptin was made available and Her2 positive cancers became much easier to treat. Also, estrogen driven cancers used to have a consistentlyhigh recurrence rate but now it is much lower.

While the rate changes vary, overall the recurrence rate has fallen by 50% in those twenty years. This makes me wonder what can happen in the next twenty years in terms of cancer treatment progress.

While breast cancer is the most common cancer among women, we must not forget about other cancers and their recurrence rates.

But in the meantime, I will call this progress.

Why do I bother to ask these questions anyway?

This week I saw my oncologist for my annual check up. I am happy to only see her once a year... Except when I nominated her for an award last winter or when I ran into her in the hallway at the hospital. So, I, who am never afraid of the direct question, asked her "so what are my chances of more cancer?". Why not ask? I would prefer to know what can be known. This little question of what could be coming in the future has been irking me for years.

The answers I got were:

• Even with my medical history of two cancer diagnosis and family diagnosis of a parent with cancer, there is no way of knowing if I am likely to get another cancer. If there was some genetic predisposition that would be different but there is no way of knowing. People who get cancer once, are more  likely to get another cancer. People who get cancer twice, are more likely to get a third cancer. Et cetera. Not very helpful.
• The chances of having a thyroid cancer recurrence are still out there but not known. It has been known to recur decades later.
• The chances of having a breast cancer recurrence since I am still on Femara (Letrozole) are somewhere around 6%. She ran my data through a computer model and got the magic number.

We talked about it a little... And then I left. And then I realized, so what does 6% mean?

Does it mean I have a 6% chance of recurrence? Or that my chance is 6% greater than the rest of the population of getting another breast cancer? I just have to accept there is a 94% chance I will not have a recurrence.

Why do I even bother to ask these questions? Did it get me anywhere? No. I guess I am asking questions that have no answer. Damn.

Predicting breast cancer recurrence five to fifteen years out

When I was diagnosed with breast cancer seven years ago, I heard about the Oncotype Dx test, for which I was not eligible (for some stupid reason I can't remember) that would help decide whether chemotherapy was necessary. It has now been available for ten years and has been shown that it can help predict late recurrence of breast cancer - which is defined as five to fifteen years out from the initial diagnosis.

I think this is real progress in reining in cancer. [I wasn't going to use the word battle or war or anything like that. I had to think and settled on reining in.] This ties in with extending the use of tamoxifen for ten years to obtain better results.

"As recognized by ASCO's guideline update, recent studies have shown that extending tamoxifen treatment for 10 years is associated  with better outcomes, however, we still need better tools to identify who those patients are," said Norman Wolmark, M.D., chairman of the National Surgical Adjuvant Breast and Bowel Project (NSABP). "This study confirms that Oncotype DX can help better define who is at greatest risk for late recurrences and the potential to benefit from extended tamoxifen, as well as those who are at lower risk and will likely have less absolute benefit from extended tamoxifen and, thus, could be spared prolonged exposure and risk of long-term side effects." 

Now of course, I am still do not have the criteria to belong to that group that was in the study but it is nice to know that there is progress in knowing about who is more likely to have recurrence. This in turns allow them to be better followed to catch any recurrence early.

Sued for not disclosing cancer had returned?

What? But it is a sad state of affairs for Valerie Harper. She was starring in a play in New York City and her brain cancer returned. The playwright and several producers are mad that she didn't tell them until she was having problems on stage from the treatment. So they filed a lawsuit. Tough cookies you guys!

Now I assume she was under some kind of contract with all sorts of weird clauses that you usually do not see outside the entertainment world. But it is stated in law that medical issues are no business of the employer. But they are mad so they are suing her.

And where is their compassion? You may remember in January she disclosed that she had three months to live as result of her brain cancer. She is now cautiously optimistic.

Let me just say a few things about this as I am seriously ticked off:

1. You are morons and being childlike. She was sick and couldn't perform.
2. She has cancer and doesn't know how long she will life.
3. Its none of your business that she had cancer before and she had no way of knowing that it would recur.
4. Finally, don't you have any sense of compassion?

Twits!

A (Short but) Very Stressful Trip on the Cancer Rollercoaster

Yesterday I went to have my annual check up with endocrinologist. When I first saw her about five years ago, I was sent for a baseline thyroid ultrasound because I hadn't had either an ultrasound ever or an endocrinologist in a very long time (decades?). Big surprise there when they found a 'something' in the thyroid bed where the thyroid used to be but wasn't supposed to be anything.

We started following it with ultrasounds to see what it was. It was clearly in the evil category of 'big enough to see but too small to do anything about'. So six month and then, as its stability became established, annual ultrasounds were the result.

I ran into friends entering the hospital and then was a little late for the ultrasound but still had to wait a few minutes. I didn't have any great expectations of issues with the ultrasound. They finally called me and I went in for my turn. It met my expectations of no problems. I went on to my endocrinologist appointment to get the results and talk about my thyroid or lack of.

While in the waiting room, I ran into another friend (see what happens when you are a frequent patient - your social life happens at the hospital?) and we were chatting away. Then a doctor showed up in scrubs and asked the front desk attendant for me because of the innocuous reason that 'the doctor needed more pictures'.

My stress level grew. Immensely. No cancer patients ever want to hear that. They sent me back to the ultrasound waiting room for a few minutes and my stress level continued to grow. I was the only one in the waiting room - me and my mind which quickly goes down that evil little road to hell.

After a few minutes they called me in again. Another tech started another ultrasound and would only tell me that 'the doctor had requested more pictures'. After a few minutes of clicking away on her screen and squishing the side of my neck with the stupid wand thing, she left to check with the doctor to make sure they had enough pictures.

My stress level grew some more. I was in tears.

The attendant came back with the supervisor/instructor. They resumed the ultrasound and whispered away while clicking and and pointing at the screen. I was more stressed.

Finally they decided they had enough pictures and sent me and my kleenex back to endocrinology where I was greeted with 'there you are - we called you and you weren't here even though you had checked in'. I was told to take a seat, no they would take me, not sit, no go in. Eventually they said go in. The nurse said she had forgotten I was sent back over to ultrasound....

She stuck me in an exam room and attempted to take my blood pressure. I have no idea what it was but I bet it was a bit high. I stressed.

Then the doctor came in and apologized and said everything is fine. She told me to take a few deep breaths. My stress level started to go down. She told me she could not imagine what I went through as even she was very surprised to learn that I was sent back to ultrasound. She wasn't the doctor who wanted more images, it was the radiologist so she was surprised as well. My stress level went down so more.

What happened is that the evil little something they were following was not found in the first ultrasound. The tech measured something different which was a completely different size. They had to go back and find what the first tech had measured and then to decide that the evil something was no longer there. Great big sigh of relief. That was about 45 minutes of sheer hell on my part. Then I went to the gym to finish destressing.

I do not blame the techs as they were doing their job and I do not expect them to tell me what they see as the doctor needs to put it in context. I'm just glad I had the results of the ultrasound about 10 minutes after it ended.

This is a day in the life of a cancer patient. Every test no matter the expectations can quickly go to hell in a hand basket. If you haven't walked the walk, you have no idea what its like.

A very unsettling conversation

Yesterday, as part of my day to myself, I dragged my sorry a$$ to the gym. As part of my getting ready ritual, I pulled on my lymphedema sleeve. An older woman entered the previously empty locker room and asked me if it was a lymphedema sleeve. Often I just say it is a compression sleeve so as not to enter the 'what is lymphedema' conversation and get into my medical history with a virtual stranger.

She looked somewhat on edge. I told her it was a lymphedema sleeve. She said she had been diagnosed with breast cancer 28 years ago when she had a lumpectomy and radiation. Then she had a recurrence 7 years ago (I am pretty sure it was 7, it might have been 4) when she had a mastectomy and more treatment.

Three weeks ago she started to get swelling around her implant and around to her back. She had had an MRI and a CT scan to make sure it was not more cancer. It was lymphedema. I believe she said her doctor called it 'sectional lymphedema'.

She wondered how she could have gotten lymphedema at such a late date for no reason. I did remind her you can get it from a little cut or injury. She replied but it wasn't on her arm and just her torso on that side. I did suggest she call and get some treatment asap as it is important to get lymphedema under control as soon as possible. She said she was going to call her doctor back later in the day.

Then we both went our separate ways.

Later I started thinking.

First of all a recurrence over 20 years after the first diagnosis. Crap.

Second of all, lymphedema 28 years after the first diagnosis and 7 years after the second surgery. Double crap.

You start to get comfortable with a cancer diagnosis. And then whammy. You find out about late recurrences and it all becomes a little too close to home. Triple Crap.

That brief conversation gave me a lot of food for thought and was very unsettling.

A peek at life with cancer

It took a new study to confirm what all of us living with cancer know - its still scary years and decades later. The study said that for the first few years after a cancer diagnosis patients cope with depression but then it turns to a much longer bout with anxiety. Why you ask? Because there is no guarantee it won't come back.


This study also looked at anxiety in both patients and their caregivers. The caregivers also tend to cope with anxiety.

If you have some sort of other chronic illness such as rheumatoid arthritis or fibromyalgia or many others, patients tend to deal with it as a chronic illness. Cancer patients also deal with it as a chronic illness but its also a chronic threat because there is no way to control or prevent it from coming back or showing up with a new cancer some place else.

How pleasant.

It took this fancy research study to tell me something I know well, 32 years later, that it still looms over me. In 2005, 24 years after my first diagnosis, I had millions of uterine fibroids that resulted in a hysterectomy. I expressed my concerns to the surgeon that I had had cancer before and was concerned about more cancer. Her reply 'fibroids usually are benign but to be sure we slice and dice them to make sure' left me feeling better about it. But I had been concerned enough to ask.

In 2007 with my breast cancer diagnosis, I started the roller coaster again. But full of little tips and reminders, that because it was my second cancer at such a young age (never say that to patients please), I got extra tests and exams as a special perk.

Years of going to doctors who say things like 'with your medical history, we need to be sure', while reassuring it does reinforce the possibility of cancer looming.

So now I shouldn't worry about depression but only the anxiety and wait for a guarantee. 

Recurrence prediction 10 years out

The Oncotype DX test came around a while back which could help predict whether women were  likely to have recurrence of their breast cancer. This score is also used to suggest different treatment options.

Now there is another option using the ICH4 gene which helps predict recurrence during the first ten years after diagnosis. Most breast cancers recur during the first three to five years so having a test which can extend well past that time frame is a wonderful option.

I will need to have a conversation with my oncologist about this when I next see her.  I am sure I will get the same answer I always get - my criteria don't meet the requirements for the test. Often its because I had another cancer prior. Or because it has been so long since my diagnosis.


Crap, they don't know, I don't know either. I'm still here and that's what is important.

This lovely little video gives about 20 seconds on this test after you learn about exercise and migraines first.

I believe my cynical side is showing today. I'm going to the gym.

Its all about the language

Who calls it a relapse when cancer recurs? I didn't know anyone did. It has a different connotation. But maybe in Australia its common.

There is a new bit of medical research (because we have to keep those researchers working) in Australia where they found a gene that half of women with estrogen positive breast cancer have. If women have the gene, they could alter the timing of chemotherapy.

Basically a basic blood test could determine if patients have the gene. 

"The test would be used to determine when cancer cells are most vulnerable to chemotherapy, which would be used to kill them off and prevent a relapse.

At present patients with this type of cancer typically receive anti-oestrogen therapy and generally respond well. Within 15 years, however, half develop drug resistance, followed by relapse and death."

How's that for putting it morbidly? Nice - huh?

"Scientists believe the anti-oestrogen therapy weakens the BCL-2 gene, which protects the cancer.

The idea would be to test all patients and correctly time the use of chemotherapy to kill off the cancer and prevent a relapse when the gene is sufficiently weak."

So its much more specific.

But its a theory now and has to go through testing and trials and don't go holding your breath because it will be quite a while.

I just wish that they could be a  little nicer in their phrasing and skip the damn word 'relapse'.

More numbers again

Yesterday afternoon I went for a six month follow up with my oncologist. I realized in the morning that I should have some questions to ask her. I mean why see an oncologist if you have no concerns? So I had to think.

After some deep thought I came up with issue number one - what about staying on Femara longer? New research has shown that longer is better in terms of preventing recurrence of breast cancer. I did not see her in person on my last visit to her office as she had the flu but I had spoken to her afterwards.

Then I decided I needed the big question answered. What is my prognosis for recurrence? I did ask my previous oncologist this once right after treatment ended, before he moved on to research. But that was five years ago and I haven't asked for an update. Why not? It is a big question but I figured I should know. Why have I gone through all this treatment and follow up anyway?

After pondering this for a few hours, I decided this was it. When I met with her, we discussed me and Femara first. The real issue is that I am handling it well - particularly my bone density has been stable which is a big criteria. Its one thing to prevent cancer recurrence but another thing to give you osteoporosis in the meantime. But my bone density is stable so its a go.

The added benefit of additional years of  Femara is seen in the ensuing years. So if I take Femara from 2010-2015, I will continue to see the benefit in 2015-2020. I can live with that.

My next question I think was a bit of a surprise for my oncologist but I did ask her what is my likelihood of recurrence. She said its probably less than 10% at this point based on my diagnosis specifics and treatment. I thought that wasn't bad.

But I immediately went home and looked up breast cancer statistics and see how I compared. A normal 50 year old woman has a 2.38% chance of getting breast cancer in the next ten years. But I have already skewed the odds that say a 40 year old woman has a 1.47% chance of getting breast cancer by age 50.

So its all a bunch of numbers but I can't let them mean much to me.

But the best news is I don't have to go back and see her again for a year.

Dear Brooke Burke- Chavet:

I don't know you, nor do I follow Dancing with the Stars or any show you have been on, I do feel some sort of camaraderie since I have also had thyroid cancer. While I greatly enjoyed the article about you and the eight things one should know about thyroid cancer, you missed number 9 and possibly more.

Number 9 is that thyroid cancer requires a lifetime of vigilance because it can and does recur 30-40 years later. This is important to remember. While most cancers tend to recur relatively soon after treatment, thyroid cancer is slow and takes its time.

As a result, even though you have nice clean results now you will need to have regular ultrasounds, that will eventually go to once every five years at a minimum. And there will be those fun whole body scans too.

I do not mean to be the bearer of doom and gloom but this is a fact that you should discuss with your doctor.

Sincerely,
a 31 years out thyroid cancer patient.

Stop changing your mind. You are confusing (and scaring) the patients.

They keep changing their minds. These are the evil 'them' who are out to confuse all the patients they cant kill off. They just released a new study that breast cancer patients should have ten years of tamoxifen, and not five. I thought I was done with it. I was on tamoxifen for 2 years and am just finishing up on Femara for another three. I would be done in January. But will ask my oncologist if there is any reason to go back on Tamoxifen.

Truth be told, I would be perfectly happy to have one fewer daily medication to take and was starting to look forward to the end of Arimidex which is currently scheduled for January.

In an evil little psychotic way, I am glad to read that even the oncologists are confused by this. You can read on below but the gist of it is women who took tamoxifen for 10 years had a 12% rate of dying from breast cancer ove rthe 15 year study compared with at 15% risk for those who took a placebo after the first five years. Howevr about 3% of women who took tamoxifen developed endometrial cancer.
 "“It’s going to be practice-changing, in my view, immediately for pre-menopausal women with breast cancer,” said Dr. Eric Winer, chief of women’s cancers at the Dana-Farber Cancer Institute who was attending the San Antonio cancer conference where the results were presented Wednesday. Those who have “estrogen-receptor positive” breast cancer, the type that responds to tamoxifen, will probably be advised to continue taking tamoxifen for an additional five years, he said.

Younger breast cancer patients who stopped taking tamoxifen years earlier may be counseled to start taking the drugs again.

On an individual level, breast cancer patients will need to weigh their tamoxifen options carefully.

On an individual level, however, breast cancer patients will need to weigh their options carefully. Endometrial cancer is a real concern, but it is usually more common in women over age 60. Patients should also realize that “the benefit isn’t huge, it’s modest,” Winer said.

Some women can’t tolerate tamoxifen and are eager to get off the drug as quickly as possible. They might have hot flashes, moodiness, and vaginal dryness making sex very painful. “About 10 to 15 percent of women don’t like being on it,” Winer added, “and unfortunately, younger women seem to have more of these side effects.”

Those with small, non-aggressive tumors with no spread to nearby lymph nodes might consider taking tamoxifen for only five years if they’re plagued by side effects since their risk of recurrence is very small. Those with larger, more aggressive tumors, however, might feel more compelled to stay on the drug for a decade.

For women whose breast cancer was diagnosed after menopause, the picture gets even more complicated. They’re usually given newer drugs called aromatase inhibitors (Arimidex, Femara, Aromasin) in addition to or instead of tamoxifen for a total of five years of treatment. Post-menopausal patients at Dana-Farber typically get two years of tamoxifen followed by five years of aromatase inhibitors.

“I’ve long believed that these extra years of treatment would help,” said Winer. That’s because with estrogen-receptor positive cancers, half of all recurrences happen beyond five years of diagnosis.

The new study found that 21 percent of those taking tamoxifen for 10 years had a recurrence during the study compared with 25 percent taking tamoxifen for the shorter period. The biggest differences in recurrence rates were seen between 10 and 15 years after the cancer diagnosis.

“That was confusing to some of the oncologists at the meeting,” Winer said, but it could have to do with tamoxifen’s cancer-preventing benefits lasting for up to five years after women stop taking the drug.

Post-menopausal breast cancer patients could be given the option to take estrogen-blocking drugs for longer, but oncologists might be left in a quandary about which drugs to give and for how long.

“Should these patients be given 10 years of treatment with an aromatase inhibitor? Should they have 5 years of an aromatase inhibitor followed by 5 years of tamoxifen? Would more than 10 years of tamoxifen be even better than 10 years? No data exist to support any of these options,” wrote Dr. Trevor Powles, an oncologist at the Cancer Centre 
London in England, in an editorial that accompanied the study."

This article is full of all sorts of 'warm fuzzy' news. Did you notice the statistic about recurrence rates highest between 10-15 years after diagnosis? I'm overjoyed.

This may have been a long awaited study but all it did was confuse and scare the patients and make them all want to call their oncologist right away and ask what impact this has on their treatment.

The R-word

Its spring time and for us cancer people the R word is not 'refund' or 'rebate' or 'renew' or 'regrow'. It is 'recurrence'. That is the EVIL word. It is the word none of us want to hear.

I have a few friends who are coping with this nasty word now. It does not mean good things. That word coming from your oncologist's mouth yanks you back on the cancer roller coaster from hell.

The problem is that any little 'abnormality' after a cancer diagnosis causes doctors to think that way. "With your history, we need to be sure, blah, blah, blah." This does not help. If you are a normal person and you go to the doctor with a headache, they ask if you have had your eyes checked, any allergies, and then rule out a thousand other things before they get to 'brain tumor'. If you are a cancer person and go to the doctor for a headache, they start with have you had your eyes checked (because even with cancer you need to get your eyes checked and go to the dentist) and then go directly to 'brain tumor' which results in a billion tests and medical 'adventures'.

Then if any test results are inconclusive, either you are subjected to a billion more tests or they switch to 'watchful waiting' which causes endless nightmares until they decide whether they were right or wrong.

The R-word is every cancer person's nightmare. For those who are coping with it - either its possibility or the reality of it - life is not easy. One friend who is coping is doing the right thing - a mini vacation in the middle of all the tests and medical adventures. Why not? I hope I would do the same thing if faced with it.

I know at my second cancer diagnosis, I went straight to denial. Not me. The difference between a second cancer and a recurrence is that a second cancer is mostly likely to be early stage - most cancers are diagnosed early and if you have already had cancer, you get all kinds of 'extra' medical adventures just to ensure you have the most fun in life. A recurrence if it is regional is probably a stage III and if to other body parts is usually stage IV both of which are considered to be late stage cancers.

To those of you dealing with the R-word as part of your life, I say make plans for your life in 20 years.

Breast cancer vaccine?

Here's a perky article telling us that the Dept of Defense has developed a vaccine to prevent breast cancer recurrence. It is just ending its stage II trials and will start stage III shortly. If successful through this phase, then they can apply for FDA approval - in five years. That really isn't that far away and they are currently recruiting participants.

With out getting technical, which I am not really capable anyway, the vaccine relates to the Her2 status of breast cancer and works with the body's immune system to reduce recurrence rates. In trials, it reduced expected recurrence rates by 50%.

Most breast cancers, like mine, are Her2 negative. So, if it is using the Her2 protein and I have a negative status, will it work for me? I am confused. I need a translator here.

"The vaccine, Peoples explained, targets a protein commonly over-expressed in breast cancer cells called human epidermal growth factor receptor 2, or HER2/neu.

Cancer vaccines typically target some protein or antigen expressed on cancer cells, he noted. “The idea is to train the immune system to recognize that protein or piece of protein that’s highly expressed on cancer cells, but not on normal cells,” he said. “That way the immune system can differentiate what’s abnormal and normal. If the immune system can recognize it, it marks it for death, basically.”"


"The researchers targeted the HER2/neu protein, which is expressed at varying levels in women with breast cancer, then honed in on the 60 percent of women who express the protein at low to intermediate levels. The vaccine is a mix of the E-75 peptide of the HER2 protein and an immune system stimulant.

If its low to intermediate levels maybe it is for me. I am confused. One note is that if you look at the recruiting criteria - they don't want healthy volunteers - I guess if you have had cancer you are not considered healthy. I do find that slightly ironic. You may call me unhealthy

Also, its all about the bottom line. The DOD developed this vaccine because breast cancer is one of the prevalent diseases seen in military beneficiaries - they want to save money.

Until my doctor can explain this to me, I'll just put it in the "if we can't kill them, lets confuse them" category for now. I see my oncologist in March, I'll try to stretch my tiny chemo brain to remember it until then.

Perhaps some real progress

How about a vaccine to prevent cancer recurrence? And it has already gone through Phase II clinical trials. The Phase III trials start next year. That sounds pretty darn good to me. Yes its only for some people with certain kinds of breast cancer and it doesn't eliminate risk of recurrence but reduces it by more than half.

These researchers chose a different route and it worked:

The senior investigator, Colonel George E. Peoples from Brooke Army Medical Center, Fort Sam Houston, Texas, told Reuters Health by email, "We have taken a different approach to cancer vaccine trials and focused on the adjuvant setting. We want to use our vaccine to prevent disease as opposed to treating established tumors."

As it has gotten through Phase II trials, this means they have already been following patients for an average of five years. It is my understanding that once a drug has gotten this far, they have a pretty good chance to get through to FDA approval.

I'll call this some real progress and look forward to more of the same.

Another reason to exercise

Perhaps I was actually doing something right. Before and during treatment, and even for a while after, I went for a daily walk. During treatment, I would drag my body outdoors to get some fresh air and exercise for a 30-45 minute walk. The only days I didn't go for a walk was when I was hospitalized. I may have been walking slower than before diagnosis, but I was moving.

I was always encouraged to do so by the doctors and nurses. Other people in treatment would look at me like I grew two heads - you mean you didn't stay home and take a nap? At the time I was doing it because it was part of my daily routine to go for a walk and cancer wasn't going to upset my routines - even if it screwed up the rest of my life. In addition, it helped with that lovely treatment side effect - constipation - that they never told you about.

Now, perhaps it looks like I was doing something right after all - they (the omnipresent) are recommending that exercise be part of cancer treatment. Patients should no longer be told to take it easy. Of course there is disagreement about how much benefit there is - whether it is a 40% risk reduction for a recurrence for breast cancer people or less - but they all agree exercise is good.

I admit I no longer go for a daily walk. The reason is a daily walk wasn't reducing my personal flabbiness level enough. Last winter I took a Pink Program exercise class offered at the local Y for the ginormous price of free for breast cancer people. Then I decided I needed more and joined a gym run by physical therapists where I get a personalized exercise program that takes into account all my personal health issues and limitations, is populated with an average age of 70, and oxygen tanks, walkers, and wheelchairs abound. When I go there three times a week, I do 40 minutes of cardio, followed by two sets of 15 of six exercises on machines, followed by more abuse with weights, etc and leave a sweating ball of exhausting after about 1.25 hours. My personal flabbiness level is being impacted by this so I am happy.

And now it looks like for once in my life I am doing something right. Today, we are back from a vacation where we managed to eat vast quantities of food with my husband's relatives and I am going to the gym after I face the loads of laundry that have piled up.

Living in the "Its not a headache its a brain tumor" years

Once you are diagnosed with cancer, the doctors usually do a few other tests to make sure there are signs of cancer anywhere else. Then, if you are like most cancer patient, you research the crap out of your diagnosis and start finding out about metastases and recurrences.

Then you get paranoid and decide you are going to die. Cancer is going to get you. You are doomed! Eventually you start to calm down and decide it was all in your head. But its very easy to start going down that road again - especially if your oncologist says you need a few more tests or something.

With most cancers recurrences head for major organs such as liver and lungs and even your brain. If you get brain metastases, the outlook is usually not very good. It is the one that is feared the most I think. But also every little ache and pain makes you think is that a cancer symptom? Over reactions to every little ache or pain are very common. Its not a head ache its a brain tumor. Its not a stomach ache, its stomach cancer. Every pain becomes a cancer symptom. That paranoia again.

But sometimes a head ache can be a brain tumor. This article talks about finding a brain tumor and their symptoms. I personally know someone who is a brain tumor survivor for over 20 years so I can rationally say it can be beaten. But that little paranoid side of me always cringes at the first sign of a headache.

More ups and downs

I think I have been neglecting my health here for the past few weeks. I don't know. Sometimes I don't feel like talking about things because I don't want to talk about them so I can pretend they aren't happening or because I don't want anyone asking me about it. And its my blog and I can blog about whatever I want.

Yesterday I went to my ankle doctor to find out the results of my ankle MRI. It turns out that yes my ankle has healed up nicely but it has left two pockets of fluid in my ankle which is why it is still stiff, sore and swollen. The answer for this is to try to stick a nice big needle full of cortisone in one of them to see if it helps reduce the swelling. (I hate big needles and don't like the fact that doctors always want to stick me with them.) I go back in six weeks to see how it is doing. Maybe she'll stick a needle in the other pocket of fluid. In the mean time, the outer side of my left ankle is a bit sore from the needle. Oh joy. All of this caused by a nanosecond of stupidity where I tried to look over my shoulder while walking at the end of July 2009.

Next week is my big avoidance. I am invoking my inner three year old who is screaming 'no, no, no' with her eyes closed. Next week I am having an ultrasound of my thyroid. Last year I was supposed to have a baseline ultrasound but it found a 'thingy' called recurrence, thyroid tissue, or lymph node. Nothing was supposed to be there. I had a follow up one in July to see if there was any change. It was the same size. It was called a recurrence or tissue. But since it had not changed, it was called more likely tissue and another six month follow up was called for. Which is next week. The problem is it is big enough to see but too small to biopsy. The fact that it was stable and hadn't changed is good meaning that it is probably just tissue.

Now left over thyroid tissue or regrown thyroid tissue isn't necessarily a good thing. I had radioactive iodine treatment to destroy all tissue and have been told that it is very unlikely or even unheard of to have left over tissue. Regrown tissue is bad because it is unsure if it is good (clean) or bad (malignant) tissue. And it can't be biopsied because it is too small. The only other test is a full body radioactive scan that requires dietary changes and other prep and requires isolation afterward.

Another reason I haven't talked much about this is that this would be a recurrence nearly thirty years after the fact. This is difficult because I don't like talking about recurrences and this is an example of why you can never say you are free from cancer after diagnosis. They just can't find anything. But then they did.

So we are just pretending next week isn't happening.

My tennis elbow is sort of healing. I was supposed to have more acupuncture today but its basically a blizzard outside so everything is canceled. PT seems to be helping and I have progressed to little bitty weights.

In the meantime, my back is having its ups and downs. Today I woke up achy and sore and I'm not sure why. But its snowing out and I can't shovel so I'm just going to work from home with my feet up on the coffee table and get caught up on a lot of work.

Otherwise, life goes on. I actually declined some volunteer work this week because I simply don't have time and was starting to be overstressed.

Oh, and I cant shovel snow so I guess my health has one good side effect. I just get to supervise.

The riddle of the cancer relapse

Cancer relapse or the 'Cancer Sleeper Cell' are oh-so-reassuring (NOT!). I read this article and paid attention to it - through all five pages. So they are now trying to figure out if cancer has its own stem cells. But they haven't quite figured it out yet. They are trying. They have been working in this area since at least 1974 - so in 36+ years they still aren't sure.

On one level its quite interesting and almost exciting that they are looking at cancer down at the cell level to see which ones are stem cells - capable of regenerating themselves. They are this deep into cancer biology that they are looking at it cell by cell, detail by detail. They can define different kinds of cells and know which ones they should treat differently.

On the other hand, its been more than 36 years so this must be quite a conundrum if it is yet to be resolved. Why is it so complicated? I don't know. They, meaning the researchers, don't know. Yet. Even going back to the ancient Greeks, they aren't sure. Is cancer what the Greeks called 'black bile'? Or is its secret hidden in the idea of a cancer stem cell?

All of this adds up to the cancer relapse riddle. Why do some relapse or recur and others not? Did the combination of surgery, chemotherapy, radiation, and hormone therapy get rid of every cancer cell in my body? They aren't sure. Just because a tumor has disappeared visually, that we can detect, we don't know if it had stem cells that could lead to recurrence. And there is no time limit on recurrence. What if they go dormant for years and then return.

Thyroid cancer is a relatively slow growing cancer. So if there are thyroid cancer stem cells, and they grow slowly, how long will it take them to be detectable. It is my understanding that current medical technology such as a CT, MRI, ultrasound, or Xray can only detect down to approximately half a centimeter. In a pathology lab, after that something is removed from your body - whether by biopsy or surgery, they can see into the cell but they have to have found it before they can take it out.

How fast do things grow? I had a breast MRI and they indicated a 'suspicious area' that they wanted another look at in six months. At the six month mark, it was a 0.7 cm tumor (benign that time).

Well, we can't run off for tests monthly and have to assume the best - if necessary, go read Candide and learn about the 'best of all possible worlds' and get some optimism. The cancer relapse is still a riddle and we have to live with it.

The M word

In cancer there are two nasty words no one wants to hear. The R word - recurrence - and the M word - metastases. The R word means it came back. The M word means it spread to other parts of your body. Quite often you get these words together as cancer often returns in another body part.

However there are some people who are diagnosed initially with metastatic cancer meaning they have a primary tumor or tumors and it is also found in other body parts. For them a cancer diagnosis is a double whammy. Not only do they have cancer, they have in multiple areas where it needs to be treated. It means (in my non medical mind) that it is in your system and you need to be treated systemically, not just locally as with an early stage cancer. And the treatment and the scrutiny will continue for the rest of their lives.

At the initial diagnosis, when cancer is found they test to see if they can find the cancer anywhere else. If they do, that's the M word.

The sad thing with metastatic cancer is that very little research is done in this area. I think the percentage of breast cancer research that focuses on metastatic breast cancer is somewhere around 4%. That is extremely low. Wouldn't it make sense that to look for not just the cause of cancer but why it spreads or returns? I have several friends who are in this boat.

Any time a person living with cancer goes back to the doctor, particularly to the oncologist, all we are thinking as well go 'no M word, no R word, no M word, no R word, no M word, no R word...' over and over again. Tell me I have a bleeding ulcer, a broken leg, degenerating back discs, gall stones, kidney stones, lymphedema, benign anything. But not the M word and not the R word and I am happy.