Comparing Prognostic Breast Cancer Tests

Back in the late 2000's, I heard about the new Oncotype Dx test that was just coming available for women who had early stage breast cancer and could help in the decision making process - whether to chemotherapy or not. The test was supposed to tell your risk of recurrence. That was great news (of course I was not eligible because of my medical history...) and many women found their risk and made the big chemotherapy decision.

New research has looked at the results of these tests and compared them. They looked at these four tests: Oncotype Dx Recurrence Score, PAM50-based Prosigna Risk of Recurrence Score (ROR), Breast Cancer Index (BCI) and EndoPredict (EPclin).

"The analysis, published in JAMA Oncology, funded by Cancer Research UK and involving co-authors at the Institute of Cancer Research, compares four common prognostic tests for breast cancer, and finds that not all are able to accurately predict whether the cancer will return after five years. This could be limiting clinicians' abilities to advise patients on whether chemotherapy or preventive medication, in the form of endocrine therapy, should be taken.

Lead author Dr Ivana Sestak from Queen Mary's Wolfson Institute of Preventive Medicine said: "This is the first time that anyone has directly compared the prognostic performance of these four common commercially-available tests. This gives clinicians and oncologists the opportunity to review all the results and decide upon the test they want to use for their breast cancer patients.

"If a woman is deemed high risk of recurrence by any test, the benefit of chemotherapy is greatest. In contrast, if a women is deemed low risk then endocrine therapy alone will be sufficient and patients could forego chemotherapy and its side effects."

The FDA approved ROR and the European Society for Medical Oncology recommend Oncotype, ROR, and EPclin. The research found that while the tests provide good information Oncotype was found to lag behind the other three newer tests. And another nice factoid for all of us is:

"However, one important critical time period to consider is years 5-10 after the start of treatment, since over 50 per cent of women with ER+ breast cancer develop a recurrence after five years. BCI, ROR, and EPclin were found to be the most accurate for stratifying women into low or high risk of recurrence after five years in patients with node-negative disease.

For women with node-positive disease2 only those tests (ROR and EPclin) that incorporated clinical information (e.g. tumour size and the number of positive lymph nodes a woman has), as well as gene expression levels, provided substantial prognostic value."

I think to keep those dark thoughts saying 'what if...' at bay, I need to talk to my oncologist about these two tests, ROR and EPclin, and see if I am eligible for either one of these... 

New research can be good but if you can't take advantage of it, it is of no use. 

That Lingering Risk Thingy

I can't say how much this just aggravates me. You get breast cancer. You get treatment and then they say we will see you once a year. You are NED (No Evidence Of Disease) for now. If you are hormone receptor positive (ER+/PR+) you get to take a little pill (tamoxifen or aromatase inhibitors) that should help you stay that way.

But there is always that lingering risk of recurrence. That's the one thing none of us want. A new study which looked at data from 88 different clinical trials over more than 20 years found that the risk of recurrence lingers after the AIs are ended.

"Researchers from the Early Breast Cancer Trialists' Collaborative Group analyzed data from 88 clinical trials involving 62,923 women with ER-positive breast cancer. The patients all received endocrine therapy for five years and were free of cancer when they stopped therapy.

Over the next 15 years, however, a steady number of these women saw their cancer spread throughout the body, as late as 20 years after the initial diagnosis.

"Even though these women remained free of recurrence in the first five years, the risk of having their cancer recur elsewhere (for example in the bone, liver or lung) from years five to 20 remained constant," says senior study author Daniel F. Hayes, M.D., Stuart B. Padnos Professor of Breast Cancer Research at the University of Michigan Comprehensive Cancer Center.

The risk of recurrence was directly tied to the original cancer's size and characteristics, and to the number of lymph nodes that were cancerous.

Among patients who were recurrence-free when they stopped taking endocrine therapy after five years, the highest risk of recurrence was for those with originally large tumors and cancer that had spread to four or more lymph nodes. These women had a 40 percent risk of a distant cancer recurrence over the next 15 years. Women with small, low-grade cancers and no spread to the lymph nodes had a much lower 10 percent risk of cancer spreading distantly during the following 15 years."

Isn't this comforting? On my part, I had a relatively small, moderately aggressive, and one positive lymph node. So that must put me in between the 10 and 40% risk of recurrence. Also, I am on the schedule for AIs for up to ten years. Maybe I will ask if I can continue them? But being on AIs only lowers your risk of recurrence, does not remove your risk of recurrence.

However, I do put a lot of credibility into this study as it reanalyzed data from so many studies. This is the kind of research that is the 'more research that was needed'. This just aggravates me that in this day and age, we still do not have a cure.

There goes my warm fuzzy feeling for the day. And you wonder why I deal with stress, depression, and anxiety.

More News I Don't Need

You know they tell us that evil cancer cells come out of the nasty cancer tumors and send them secretly through your body so that they show up later as unwanted metastases. These little cancer cooties (the professional term) are just nasty and unwanted and really want to kill us all in the end.

Now we have new research (because we always need more research) on how metastases occur. Or more correctly where and when the cancer cooties come from the tumors. Earlier research had thought that cancer cells came from the exterior of the cells and not very early.

"Even in remission, cancer looms. Former cancer patients and their doctors are always on alert for metastatic tumors. Now scientists at The Scripps Research Institute (TSRI) have discovered why some cancers may recur after years in remission.

The findings, published in the journal Cell Reports, show that invasive tumors can begin sending out tumor cells far earlier than previously thought. These escaping cells – which can enter the bloodstream before the primary tumor is detected – may seed secondary tumors that don't show up for years.

Importantly, the scientists demonstrated that the escaping tumor cells reach the bloodstream by entering blood vessels deep within the dense tumor core, upending the long-held belief that metastatic cells come from a tumor's invasive borders."

I did not need to know this. I really did not need to know that these cells can escape long before the primary tumor is detected. 

"These escaping cells – which can enter the bloodstream before the primary tumor is detected – may seed secondary tumors that don't show up for years."

I love that line. Your metastases could be sitting there, hiding, for years before and after your original diagnosis. Then you get to sit there and ponder 'did my chemo kill those cancer cooties? Or am I doomed already?' No, doomed is not a good word. But I can't think of a better one. 

In addition, now oncologists need rethink metastases...

"The research suggests a primary tumor does not have to be highly invasive to seed metastases. In fact, doctors may want to reconsider the time frame for the onset of cancer cell dissemination. While invasive tumors are more likely to manifest intravasation, the two processes – intravasation and invasion – appear to be independent of each other."

So your basic, run of the mill, cancer, could be sending out more cooties all the time. Nice.

I need to stop reading cancer research. I didn't need this.

Balancing Cancer Recurrence Fears

So I have been blogging about cancer recurrences and then I find a study that talks about how to cope with cancer recurrence fears. Basically what it comes down to is counselling, support and knowledge.

A study was done in Holland and followed several cancer patients and provided information and support on their cancer and recurrence issues. They compared two groups, one who received access to normal psychosocial support. The other group received blended cognitive therapy consisting of:

• five individual, 1-hour, face-to-face counseling sessions
• three 15-minute Internet chat consultations
• access to an informational website

It doesn't sound like a lot of support but after three months:

"Overall, about 33% of people who received blended cognitive behavior therapy had their fear of recurrence ease significantly, while none of the people who received usual care had their fear ease significantly."

So if you are concerned about recurrence don't hide in your house, go out and get some support. I think support doesn't always need to come from professionals. Sometimes just talking to others with your type of cancer is very supportive in itself. If you are very concerned you need to get some professional counseling.

All this goes back to my point that your emotional well being is just as important as your physical one. 

Going Back To That Recurrence Thing

With cancer, this is what we all want to know. Will it come back?

The other day, I blogged about cancer recurrences and being on the hook. Of course with Olivia Newton John's twenty five year later cancer recurrence, the media is now full of cancer recurrence information.

Before I start, I need to state that anyone who says they have cancer and then say they are cured after treatment are idiots. You are not cured after a cancer diagnosis, you only can exhibit 'no evidence of disease' or NED. While there have been many cancer treatment advances in recent years, there is still no cure.  Why do you think you need to keep going back to your surgeon or oncologist? They want to keep monitoring you....

So anyway, the media is now giving us lots more details on cancer treatments and recurrences. This will continue until the next big news flash that will displace it. There is a nice long article on cancer and recurrence on CBS now where they interview Dr Deanna Attai of UCLA and Dr Andrews at Hofstra Norwell School of Medicine.

""I would say breast cancer – a lot of these cancers – have become more of a chronic illness than a terminal illness. A patient may do well with bone metastasis. They may need ongoing treatment for the next five to 10 years, but it doesn't mean it's a terminal sentence. With radiation, thankfully, our techniques and technologies have improved. It all depends on how big the area is and the critical structures that have been affected," said Andrews....

Attai said a recurrence diagnosis can be very emotional for a woman.

"It's different for every patient so I do not want to generalize, but some common themes I see are that many women never truly get over having breast cancer. It's always something that's with them. Many women are changed by their experience, but the further out you get, the breast cancer takes more of a back seat. And we tell them to go back and live your life. A recurrence often brings back all the emotions and then some from when they were first diagnosed. And especially if it comes back somewhere else in the body," said Attai.

She said the first question is always, "How long do I have to live?"

Once the cancer has shown that it's gotten outside of the breast to other parts of body, she said there's the potential of dying from the disease, but she tells patients that tests can help identify what's going on and they can discuss treatment options and their effectiveness.

"We stress that we do have a lot of newer agents and many women are certainly living longer. But there's no question that women living with metastatic disease, at least right now, we can't say we can cure patients. We're much better at keeping the disease under control, gaining a remission now, but at this time, metastatic breast cancer is considered incurable. I think we will get to the point with newer, targeted agents, to talk about long term remission," Attai said."

Right now is a good time to be a cancer patient. There are lots of new treatments coming out. I have several friends who have been stage IV with breast cancer for more than a decade. Their quality of life is pretty damn good. 

It doesn't matter how long ago you have had cancer, you need to remember that it still could return. I think you are at a higher risk of getting other cancers as well. Your body may be a temple but it could also have cooties hiding in the corners.

We need to remember we need to be alert to changes in our bodies for changes to talk to our doctors. Even if you call your doctor in a total panic because you could swear you have a new tumor that is going to kill you within a year (yes, I have done that and my doctors did not tell me I was crazy). Doctors do realize that patients are the ones who notice changes first so be sure to speak up.

In the meantime, don't go crazy, just stay alert.

How Long Are You On the 'Hook' For A Recurrence?

After cancer, we always wonder 'will it come back?' Actually, we don't just wonder, we obsess over this. For a long time, we think every little owie is probably cancer. We can only get our life back on the rails when we learn to cope with this. But still then every so often we still freak ourselves out about something. And life goes on.

But post cancer, every so often our doctors tell us something we don't like and we go back on that cancer roller coaster. Time goes on. Years start to roll by.... We assume we are good because its been a decade or two....

Now I must ask the question 'how long are you on the 'hook' for a cancer recurrence'?

I know that research and the past has shown that thyroid cancer has been known to recur 30 or 40 years later.... How fun. Breast cancer I always kind of thought 15 years or so you are good.

The news told us this week that Olivia Newton John has had a breast cancer recurrence. She thought she had back pain but instead it was cancer metastases. I made a point to look up how long ago was her original diagnosis. That was in 1992. You can do the math. 25 years ago.

Damn.... So my ten years out doesn't mean that much. Damn, damn, damn.....

More Evil Cancer Cells

So I didn't know (or maybe I kind of knew and was pretending I didn't) that some cancer cells go hide in your body to come out later as metastases. However, current research has been working on this issue.

"...researchers have discovered the conditions by which specific signals in primary tumors of head and neck and breast cancers can pre-program cancer cells to become dormant and evade chemotherapy after spreading."

How nice. Or actually how evil! I think it is pretty nasty when cancer cells hide so they can recur and try to kill you. The elude conventional treatments including chemotherapy.

However I think its pretty darn good that finally there is research going on that will help develop new ways to find these evil cells and stop them.

"Recurrence of cancer after initial treatment remains a critical unsolved problem for too many patients," said William Oh, MD, Chief, Division of Hematology and Medical Oncology, and Professor of Clinical Cancer Therapeutics at The Tisch Cancer Institute, Icahn School of Medicine at Mount Sinai. "This highly innovative research provides a novel path forward for targeting dormant cancer cells which may be 'hiding' from our available therapies and which may need additional drugs to root them out and improve cure rates.”

A Really Good Reason For Not Eating Tofu

I have been aided in avoiding tofu by the confusion over whether eating soy contributes to breast cancer growth. I really hate tofu. My mother fed it to us as children and I didn't like it then and I don't like it now. I might eat a little bit in my hot and sour soup but I will never order a dish which is tofu based.

But now (finally) we have clarification on the soy or no soy for women with breast cancer:

The issue is eating soy products seems to give women protection from breast cancer. Asian countries where soy products are eaten regularly have much lower rates of breast cancer than the US. But the estrogen-similar stuff in soy products has been thought to contribute to breast cancer growth, especially with hormone sensitive breast cancer.

So the truth was found in some recent research using rats:

"The researchers found that rats that were given soybean isoflavones to eat throughout their lives — in particular, one type of soybean isoflavone called genistein — had improved immunity against cancer. But rats that weren't given the isoflavone until after developing breast cancer didn't have that same immune response to kill cancer cells. Instead, these rats had higher rates of cancer growth and higher rates of recurrence after their tumors were removed."

And more:

"All of the rats were then treated with tamoxifen to kill the cancer. The researchers found that the rats raised on genistein had only a 7 percent chance of breast cancer recurrence after tamoxifen treatment, but the rats that were recently given genistein had a 33 percent recurrence rate."

So if you eat soy all your life, your risk of cancer should be lower and remain lower for recurrence. But if you are diagnosed with breast cancer, don't start eating soy. 

See now I really have a good reason for not eating tofu.

Risk Vs. Worry

You get cancer, get treated, and they say 'here, go on with your life'. (That last part is so helpful! NOT.) Somewhere in the middle of all that treatment crap, they give you all the numbers about statistics - which,as the patient, we interpret wrong. If they say you have a 99% chance of living five years, all us patients put ourselves into the 1% who are not going to make it. (And we ignore the fact that the entire 99% could be hit by a bus at any time.)

Over at 'The Big C and Me', I read today's post by Renn about 'Five Years and Counting' and she included the American Cancer Society's statistic about survival rates for stage II breast cancer. Then I read this post about cancer people mis-interpreting risk and worrying too much - When Does Worry Outweigh Risk. The article starts with:

"For patients with breast cancer — even after treatment — worries about risk are common. Patients wonder, could the cancer come back? Will it spread throughout the body?"

Obviously whoever wrote this has never had breast cancer. Of course we worry, its cancer. Anyway, some research was done and they found after talking to 1000 women with breast cancer diagnoses behind them and found:

"They found 36 percent of the DCIS patients and 25 percent of the low-risk patients substantially overestimated their risk of distant recurrence.

Women who overestimated their risk were three times more likely to report worry about recurrence. They had higher distress scores and lower mental health."

This surprises them? Anyway, go read the whole thing here. They go on to talk about how patients need to understand the differences in risk - when is it low and when it is higher and the difference between local (won't kill you) and distant (the bad kind) recurrences. How patients need to talk to  their doctors more about this and learn about all this so they don't end up with 'higher distress and lower mental health'. 

(These people clearly do not have breast cancer. They don't understand us.) We had cancer and we are going to worry. We just need to learn to manage the risk 

I have had cancer twice now and I do worry about the risk. I had cancer once and my worst fears came to pass when I got it again. So now I am not supposed to worry about getting it again? How's that going to happen?

I'm going to work on worrying that risk thing again still so I don't have 'higher distress scores and lower mental health'. I have a therapist and one of my supposed diagnoses is 'post cancer depression'. When I get past the depression for the first cancer, I'll work on the depression for the second cancer. But I will work on it.

That Was a BAD Dream

Last night I had a weird dream. I woke up around 3 AM after dreaming that I had a rock hard lymph node on the top of my chest, near the base of my neck. In my dream, I could slide it around and feel it. A bunch of doctors were there trying to explain to me that it wasn't a big deal and chemo would solve everything. Thank god I woke up!

But of course, then I had to see if I could feel a rock hard lymph node on my chest near my neck. Of course I couldn't.

Nothing like a dream to show your worst fears in 'living color'.

And did I ever get back to sleep? No. I am sure I will feel very 'energetic' this afternoon....

Post Breast Cancer, Happiness Is A Clear Mammogram

I had my mammogram last week. I don't talk about these ahead of time because I don't feel the need to. If I feel the need to, you can bet my blog will be covered in mammogram information.

But even if I don't talk about it, doesn't mean I am not thinking about it. You can bet I was thinking about it. I was convinced that I had a recurrence and I timed my mammogram (for two days before my annual oncologist appointment). I was sure I had a something.

I had already started putting together a plan in my head on how I was going to handle it, tell people, deal with treatment, talk to my oncologist on Friday about it. I was positive.

I can convince myself I am going to die next week if I really try. Anyone who has gone through a cancer diagnosis can easily convince themselves its back. Face it, there is always that little tiny voice in the back of your head that says you know it has come back. It whispers in your ear while you are sleeping, or trying to sleep, in the middle of the night.

But I am so happy that it was clean, nothing exciting to talk about. I talked with my oncologist about it just to be sure. But in the meantime, I am happy.

Will It Come Back?

Will it come back? We ponder that question. We obsess over that question. We analyze it to death. We dissect that question. We dream about that question. We have nightmares about that question. And no one can tell us anything.

Once you get cancer, you never know if it will come back. Or when. That's what really sucks about cancer.

I did read an article summary recently that discusses some indicators of when breast cancer might recur. A study was done to see if it could be determined which factors contributed to when breast cancer might come back. Some factors were determined to have impact and others not.

A high grade tumor (meaning how aggressive it is on a scale of 1-3) is more likely to recur sooner as opposed to later. A hormone receptor sensitive tumor is more likely to recur later than an ER/PR- one. Smaller tumors were more likely to recur later than bigger ones. All of that sounds fairly logical.

But what doesn't sound logical is that lymph node involvement, patient age, and menopausal status did not appear to correlate to when recurred. We do need to remember we are talking about 'when' it recurred as opposed to 'if' it recurred.

I would have thought that the more nodes involved the sooner the recurrence. I had one tiny little lymph node in the cancer party so this does not help me at all. But otherwise, my tumor was grade 2, ER/PR+, and relatively small at 1.7 cm. So all this adds up to say that my cancer if it recurs is more likely to recur later. And since I am now 9 years out (where all that time went, I have no idea), its all a crap shoot anyway.  I hate cancer. I need to find something cheerier to do....

Fear Of Recurrence

Face it, that's what we are all scared of. Will it come back????? Once you get cancer, you spend the rest of your life wondering at some level 'will it come back?' or 'will they catch it in time?'

The biggest thing about learning to cope with a cancer diagnosis is learning to squish that evil little voice that asks 'will it come back?' when ever you aren't expecting. Sometimes I feel I need a little punching bag or something that I can smash with a baseball bat and beat the crap out of when I feel the need.

[Actually I think all post cancer treatment packs should come with a stress relieving punching bag or something. Complete with a personalized baseball bat or punching bag. Something we could beat the crap out of just to calm our nerves. Does anyone else want one?]

I am serious. That evil voice sometimes is muted or is silent for a while, but we know its not going to last. Learning to control it from taking over your life what we all strive for. I can tell you that while sometimes I have to count back to the dates of diagnoses, but that damn voice never goes away. It lurks in the background. It usually grows in response to how near I am to a medical facility or personnel, especially when any kinds of tests are taking place.

The other little evil voice is the one that says 'what if I get another cancer?' Maybe we need a whack-a-mole game that we can smash to get rid of both.

Mutation Tracking

(I forgot to blog yesterday. Feel free to blame chemo brain, fibro fog or whatever.)

I just learned about some new research which has lead to the use of mutation tracking in the blood of patients previously treated for breast cancer. They look for DNA mutations to detection recurrence months before anything would be detectable through scans.


This makes a lot of sense to me. Why can't cancer be detected in DNA or some other way long before it can be found in a scan? Wouldn't it be wonderful to just go for an annual blood test or something that told you if you had cancer developing? Not to get ahead of myself but I am all for this.

I like this kind of progress. It actually seems that doctors are beginning to use it.

The 'joys' and solitude of a second cancer

When diagnosed with a first cancer, we are all gobsmacked, appalled, overwhelmed, stunned, depressed, shocked, awed, overrun, and more as a result. You struggle through treatment and the ensuing body changes and emotions and slowly return to that so called 'new' normal and life resumes.

Then when cancer, the 'gift that keeps on giving', shows up again, you start all over again. It can be a dreaded recurrence or metastases or you can start all over again with a new cancer. Second cancers are not recurrences but new primaries. Such a joy. Not really.

When my second cancer showed up, in some ways it put me back to where I was emotionally but I was better prepared for it emotionally. And I was more proactive in coping with it. I joined support groups, on and off line, got therapy and worked hard at accepting this new health disaster.

However, I was basically the only one I knew who had had two cancers as me. Actually I know one other person in the world who had both breast cancer and thyroid cancer. (I know there are other people who have had these two cancers because it is not that uncommon that they show up in the same person but the only person I could connect to was in Europe.) We were both in the same online support group. She posted a message asking if anyone had had both and I responded.

With one cancer, you can find a ribbon to support you, a group of people like you with the cancer, and you can all bond with each other. Or you find a group of people have had a single cancer and you all can talk about the joys of treatment. But with a second cancer, you become an outlier. Most people only get one cancer. The multiple diagnoses are much fewer.

This is starting to change. New research (because we always need more research) shows that one in five cancer diagnoses are second cancers. In the 1970s only 9% of cancer diaganoses were second cancers. There are many reasons for this:

"About 19 percent of cancers in the United States now are second-or-more cases, a recent study found. In the 1970s, it was only 9 percent. Over that period, the number of first cancers rose 70 percent while the number of second cancers rose 300 percent.

Strange as it may sound, this is partly a success story: More people are surviving cancer and living long enough to get it again, because the risk of cancer rises with age."

So since I was young to get my first cancer, before age 20, and young to get my second cancer, before age 50, am I doomed to get more cancers? But at least it won't be as lonely as this second cancer rate continues to rise.

Cutting the last cord

What happens after all the treatment? Cancer patients are diagnosed and then get all kinds of care to make sure it doesn't come back (which is our greatest fear).

At the end of treatment, all of a sudden this constant care by all kinds of medical people to check you over and reassure you that it hasn't come back comes to a screeching halt. At this point, the doctors all say come back in 3, 6, or 12 months and we will check again. And the patient says 'whhhaaattt? But what if it comes back? Who will know?'

This is the most frequent time for patients to wig out and require emotional support from a support group or therapist to make sure they don't go off the deep end. It is a very stressful time. You are alone with the little thoughts in the middle of the night - what if it comes back?

With breast cancer, its a little different. You get surgery and chemotherapy. Medical personnel is all around to be aware of a single sneeze. Then some get radiation as well where you are seen daily for weeks on end. At the end of this time most go on to hormonal therapy - Tamoxifen, Femara, Aromasin, or the other one who's name I can't remember right now. That lasts for five to ten years. And then finally you are on your own and you see your oncologist maybe once a year.

I went through this a long time ago when I had thyroid cancer. At the end of about six months of doctor appointments I was left to cope on my own. And I can tell you in some ways it really sucked big time. And left me with some strong emotional issues that took a long time to recover from.

When I was diagnosed with breast cancer, I told myself I was not going to let cancer suck any happiness out of my life and went to support groups before my first surgery. Then I got a therapist at the end of radiation as well. But I was still on hormonal medication - 2 years of Tamoxifen and then Femara.

Yesterday I went to see my oncologist and she said it was time for me to end Femara - that last little pill to help prevent it from coming back. She said she had mentioned this at my visit last year but since I can't remember last week, never mind last year, I had no memory of this. 

Basically while there is lots of data on the benefits of staying on Tamoxifen for ten years there is no research now to prove there is any benefit to staying on Femara or other aromatase inhibitors for longer than five years. There are ongoing studies on this but no results yet. This research will take years because they are following women after five years of Femara.

My oncologist brought up the joint pain issues I have. She said that one of the side effects of Femara was joint pain. I couldn't tell you if I am experiencing this or not. All I can remember is after chemo, I went on Tamoxifen and started feeling better because I wasn't in chemo any more. Then after two years of Tamoxifen I went on Femara and again started feeling better again because the side effects of Tamoxifen can be pretty bad. But I have no idea how I would feel not being on Femara because pre-breast cancer I was a much healthier person.

So now the plan is I am off Femara for now through Labor Day. That should give enough time for it to leave my system and see if I have any fewer pains or if I get too worried. My oncologist brought up the stress of recurrence fears, not me. She said at that time, I can always decide to go back on it if I want.

I am happy to take one less pill each day. But it has been the last stand against recurrence. So now I have to learn to live without the benefits of anything to prevent recurrence. For now, I think I can live with this. But if my mind starts playing tricks on me with this recurrence crap, I may wimp out and decide to go back on it.

Hope

The one thing we all have to keep at all times is hope. Yes, hope. We all must continue to believe there is a rosier life out there for us.

But for a cancer patient, we must keep our hopes alive. What do I hope for?

• A cure for cancer
• My cancers do not come back

Two hopes. Nothing fancy. Two little phrases. Very simple. I work on these two hopes differently.

First I read medical research but do not obsess about it. I read about on going research and upcoming developments. I read about doctors' opinions of the research as well. I know not all research is going to help me. Some of the research may not pan out. Some of it will pan out but wont be available to patients for another 10-15 years.

But all of it gives me hope. I can see progress in the works to make sure fewer people go through medical misadventures, heal better, have a better prognosis, and lead healthier lives, even with a cancer diagnosis.

Second I do everything I can to make sure my cancers do not come back or reappear elsewhere in my body. I try to take care of myself. I go to the (damn) doctor as often as I should. I take my prescriptions. I go for suggested tests and other fun misadventures. I get exercise. I eat right (mostly). I do my best.

By being proactive in my health, it allows me to feel comfortable that I am doing all I can to make sure my cancers do not reappear. Or if they do, they will be caught early.

Hope is optimism and I need to keep it close in my life.

Blood test for cancer?

[Did you take the survey yet on who reads blogs? There's still time. I'm sure you meant to go back and complete it later so here is a gentle reminder. You only have 9 more days. Go take the damn survey! http://fluidsurveys.com/s/blogimpact/]

So I am pleasantly surprised to learn about this new blood test that can detect cancer without a biopsy. They call it a liquid biopsy. Basically it means that they hope that cancer can be detected before its noticeable. This is not the same as the blood biopsy I blogged about the other day for breast cancer. This is something else that is new.

It has been tested on patients with lymphoma and one woman with lung cancer.

"The hope is that a blood draw — far less onerous than a traditional biopsy or a CT scan — will enable oncologists to quickly figure out whether a treatment is working and, if it is, to continue monitoring in case the cancer develops resistance. Failing treatments could be ended quickly, sparing patients side effects and allowing doctors to try alternatives."

This means that patients wont have to wait for months to see if their cancer treatment is working. They can be monitored through blood tests. And recurrences of lymphoma were detected three months before they were noticeable.

Of course more research is needed but things look good. Personally, while I am not a fan of too much blood work, I much prefer them to other tests or biopsies.

That niggling little thought

I love watching 'Chasing Life'. It brings up all the issues that us cancer people have to cope with and its about young people with cancer. I can relate, I just didn't have the support group they have.

This week's show was about that recurrence thing. Where April deals with recurrence issues. She gets a bloody nose and then a bruise and then the anxiety and the depression when a friend gets a recurrence. And there's more that I wont share so you go watch it. (Great show.)

But if you have ever been diagnosed cancer you can relate to that recurrence thing. The 'what if' or, actually the 'when', depending on your cancer's stage. Living with cancer means learning to cope with the niggling little thought of recurrence.

Face it, that is what we are all doing. We are all trying to manage that niggling little thought so we can live our lives as best we can. And that's all we can do.

That recurrence thing

Its the other elephant in the room that only the cancer person can understand. What do I do if it comes back????? As Barbara Jacoby points out over at Let Life Happen, we need a bit more focus on breast cancer, and other cancer, recurrences.

Ask any cancer patient that made it through treatment, the next concern is 'what if it comes back?' Well as my little voice of experience speaks up, at my second cancer diagnosis I was slightly  more prepared than my first. I  had a 'taking care of me plan' in place by day 2, even though I was so stressed about surgeries, chemo and all that fun.

Since I had already lived the cancer roller coaster for 26 years, I had some experience to fall back on. It didn't prevent me from completely freaking out but it did allow me to have a little voice inside me saying 'you did this one and got through it, you can do it again'. I also had the me plan in place.I was in a support group before my first surgery. I signed up for another support group - this one was introduction to breast cancer. At the end of treatment, when many cancer patients fall apart, I had a therapist. I blogged, I talked, and I coped with it all, with varying levels of anxiety.

My plan for cancer three is already in place. I don't care what kind of cancer it may be, but I will put me to the forefront once again. What will it take to keep me sane through the process? Probably more or continued therapy. Maybe a second opinion at some big fancy cancer hospital if its some kind of recurrence.

But what I would really like to see is more research into why some cancers recur and some don't and as to why some people are more likely to have their cancer recur than others. Give me some info people! I need to know. Thank you.