how do you know you are cancer free?

[Alyce]

I usually forget to ask all my questions when I see my Onc. and here is one for all of you who have continued on for more than one year of herceptin. Is there a time when you can be tested to know that you are cancer free? I wonder if you just go for your mamograms and assume that you are cancer free if nothing shows up?
How does your Onc. determine the length of time for you to continue on with herceptin when it goes beyond the year?
Also- I met a woman at my radiation appt. who is being treated again after 22 years, and while she was on chemo this time they found another cancer in her breast. Very confusing to me. So does that mean that a brand new cancer came into existence, overcoming the current chemo?
It would be nice if there was a test to actually tell you that you are cancer free. I am kind of nervous thinking that even while we are taking Femora and herceptin we might still have active cancer cells.

[Mary Jo]

Hi Alyce,

I guess the worst part of a cancer diagnosis are the points you bring up. The uncertainty of it all. The never really knowing what is going on inside our bodies. Of course there are always tests like CT's, PETS, MRI's, blood work etc. but these are not always accurate either.

So, yes, you are right.........it would be nice if there "was a test to tell us if we are cancer free" but that isn't anything we have. So, all we can do is follow up with our oncs., stay on top of symptoms that don't go away and live our lives to the fullest each day AND to always remember that to be a survivor we need to live with confidence and the assurance that none of us know what tomorrow will bring. None of us. Whether having had cancer or not.

Thank God for this day called "today."

Hugs to you...

Mary Jo

[atdec05]

Thanks, Mary Jo, for those inspiring words. Something I try to follow but it isn't always easy.

As to a concrete monitoring test, there is promising research to be able to detect small amounts of circulating blood tumors. Of course, nothing currently available.

- Anna

[TSund]

There was that encouraging bit on PH differentiation (via baking soda!) but that's a ways out yet

[DanaRT]

Mary Jo,

you write, "live our lives to the fullest each day AND to always remember that to be a survivor we need to live with confidence and the assurance that none of us know what tomorrow will bring. None of us. Whether having had cancer or not."

I needed to "hear" this.

Dana

[hutchibk]

I needed to read that too!

And I suppose that no-one really knows if they are cancer free - even those who don't yet know that they have it...

[CindyE]

Yes this is a great thread to read. No one knows for sure. We can only get the treatments and trust God to handle the rest...

[Soccermom]

Today is a Gift thats why its called, "the Present"!

[LAURIE]

I am actually thinking that I have post traumatic symptoms from all of this. I cannot go 15 minutes about fearing about reoccurance. (this is even happening during my extermely busy workday)The nasty lymphedema I have is also just a constant reminder. I started taking xanaz to hep me calm down. I am seriously thinking about talking to a psychiatrist about it. Though I don't want to take drugs they are the things that are helping my thoughts get manageable. I would of thought being 6 months out treatment I would not of been so scared. I am going to be this scared until I am 2-? years out? I also feel nauseous and very dizzy when I am in a building with a very a high ceiling, or overly crowded room, with lots of people. Before I could handle anything. what has happened to my psyche? STRESS I guess (post traumatic and current)

[hutchibk]

The trauma of cancer dx and treatment can really wreak havoc on your nervous system. Your "sympathetic" nervous system can easily get stuck in the 'fight-flight-freeze' mode and your "para-sympathetic" isn't able to kick in and play it's role of 'rest and digest'... and it can cause a degree of underlying depression that results in a "tape loop" playing over and over in your head. I learned this recently from my counselor. If you haven't considered going to a counselor, I highly recommend it from my experience. And maybe do some reading up on Somatic Experience as a possible way to activate your 'para-sympathetic' nervous system. In my humble opinion, anti-deps and anti-anxiety meds are a god-send to cancer patients, as long as you find a psychiatrist who is a skilled artist at finding the right one for you at the right dose.

[Sheila]

Alyce
Unfortunately this is life...none of us has a guarantee against any disease....you begin by taking and savoring every day....you must always be vigilent, but not to the extent that you do not enjoy the life you have....no of us know....its like before diagnosis...yes there is always a chance, but I do not focus on the negative...there is too much positive influence around to focus on!!!

[Unregistered]

I think there's something about having the technicians get bug-eyed and say, "Holy Crap" when they put your first ever mammogram on screen (the first one was "diagnostic") and they mammogramed your shoulder because there was nothing on the breast mammogram...they're shocked by the image of cancered lymph nodes that are fixed and matted to your chest wall that looks like a big bird hocked up a well-chewed rat...that creates a bizarre sense of unreality that follows you your entire life.

Then, when you have a biopsy, the surgeon comes in and says, "I've never seen anything like this. I've called all over the country."

We just cannot forget "Holy Crap."

Yup.

I get it.

Tammy Lou...diagnosed January 2005

[CLTann]

Although the question is asked by all of us, yet there is no potential test method that can detect the micro cancer cells. All people have cancer cells in their bodies and we rely on the healthy cells to destroy them. Therefore, even if there is a sure way of testing, all of us will get a positive report. The circulating cancer cell is a test being actively studied, but I don't think it will be quickly adopted.

[CoachPlayWin]

Alyce,
I know exactly what you are talking about; ever since completing my chemo in January, I can't stop thinking about it coming back. Every cough, every bone ache, every twinge in my breast makes my head go directly to the bad place. Since my doc doesn't do scans unless there are symptoms, I haven't had any. I don't know when this will stop, but it's terrible...can't sleep most nights worrying. I am going on with my life...working, planning a wedding, exercising...but it's always there. Can someone explain to me when it will feel better????

[DanaRT]

Alyce,

I asked a 3-year survivor I met a few months ago this exact question. She did say over time it gets better. I sleep well at night thanks to Ambien. It's the mid-day nap that I wake in a panic, I nearly cannot breath. Hoping the tiredness will go away once rads are complete---I need to quit napping!
Where in Ohio are you from? Your onc practices the same protocol as mine in Fort Wayne...no scans unless there are symptoms.

Take Care,
Dana

[Mary Jo]

After reading Laurie's post I have one more thing to say.................

to Laurie and anyone else feeling like her........Laurie you first had your port removed 1/08 - it is now 5/08. Not very long at all "away" from treatment. I SOOOO remember being 6 months past treatment. I was a WRECK. Like you, I constantly thought of recurrence and EVERYTHING scared me to death. I thought everything was cancer.

The reason for my post was to reassure you that it does get better. It does!!!!! I am approaching my 3 year "cancerversary" (July) and just recently - I'd say, the last 6 months to a year (I don't even think a year) is when I really started feeling "better." I think it's when I really started putting things in a little better perspective and trying to TELL myself how unsure life is for anyone and really started believing it.

It is a hard process. It is! But, you will get through it and you will start trusting your body a little bit more. Eventually you will be able to put some of this behind you. Does it ever go away for good? Of course you know the answer is a solid no but I think it starts getting easier and life starts feeling alittle more normal as time goes on.

Just give yourself time. And most definitely get some help dealing with these new found emotions if you need it.

Love to you Laurie and to the rest of you...

Mary Jo

[Jackie07]

Having breast cancer means that we are more likely (compared to other people who have never had cancer) to have another kind of cancer, according to one of my neurosurgeons.

So, the question is not "will it happen" or "when will it happen again". The question is "Do we accept us as who we are?" We are cancer survivors. The fear is real. But we continue to live life to the fullest, so our effort for survival will be our mark left on this earth when we are gone.

[Becky]

The first year out is a difficult time. Treat your with care and ensure that everyone else who loves you pampers you too. Besides the fact that it is one year or less since your whole life changed, you are also not even looking like you. Your hair is extremely short, probably not the same texture or color you are used to. Maybe you were lucky to have lost some weight but unfortunately, you probably gained (which I think is really unfair). You wonder if you will see your children or grandchildren grow up. And I will say what I have said here before, LIFE IS GREAT but not everyday is good. You will be here. My daughter just graduated college 2 weeks ago and she was just packing up to go when I was diagnosed. And I saw her graduate. And next year my youngest daughter will graduate high school and she was just going into 8th grade (that will be a traumatic and tearful one for me).

It is hard to get past treatment quickly because you aren't yourself in many ways - physically, emotionally, spiritually. It's not even a "Why me" thing - its just so much is different and it will never be the same. But that does not mean it won't ever be good, great, better than before because it will. It will be a new normal and it will be more relaxed than you can imagine! Boss screams at you, child breaks curfew, broke another "good china" dish - none of these things are the worst thing that ever happened to you - no way. Relish that one. Find great places to go and survive in - restaurants, parks, malls, islands (whatever your pleasure). It takes some getting used to to learn how to really live but you will have the rest of your life to get used to your new normal. Have fun at it.

[CLTann]

Earlier, I was looking for an article showing the recurrence rate versus time. I just ran across the following article having the data to show the high recurrence rate at about one year after first diagnosis. Please read the following:
http://breast-cancer-research.com/content/9/3/208
The authors use the term dormancy to characterize the delay of recurrence.

[goops]

In the not to distant future - it appears that there may be a blood test that could be used to diagnose and to monitor cancer patients.

http://www.cbsnews.com/stories/2007/12/19/health/webmd/main3633108.shtml