Log in or Register to participate in these discussions

Are We Ever Cancer Free?

Are We Ever Cancer Free?

Posted by Survivor96 on Feb 1, 2017 11:56 pm

Hi there, my name is Brenda and I'm struggling with the question, are we ever cancer free? My journey started in October 2015, I was diagnosed with breast cancer, stage 3.  I had a mastectomy with lymph nodes removed.  At that time, the surgeon informed me that he removed "all the cancer" and proceeded to let my oncologist know.  I received chemo, radiation, recently had my ovaries removed as my cancer is HER2+, Hercepton for a year and currently taking Exemestane.  I have a scheduled appointment this month to remove my port. I found this strange because I haven't seen my oncologist since October 2016 and I thought he would send me for a scan just to make sure the cancer hasn't spread. But as my husband keeps telling me, my oncologist did tell me that I wouldn't be getting a scan unless I notice a change in my body.  I'm just feeling a little frustrated, any advice would be greatly appreciated.  Thank you!

Re: Are We Ever Cancer Free?

Posted by mchesher on Feb 3, 2017 3:29 pm

Hi Brenda,

Short answer to your question is: I sure as heck hope so!  But besides that, are you on periodic scans right now?  As a bit of a cole's notes version of my background - brain tumor as of march 2015, surgery 3 days after initial diagnosis, radiation about 2 weeks later that lasted through May & June.  I'm on a cadence of MRI's every 6 months for 5 years (only 3 more years to go!) 

Anyhow going back to your original question - yes we can absolutely be "free" of this nasty disease, it's really the permanency of it that's always a doubt in the back of our minds.  I have an MRI scheduled for next week and I won't even try to pretend the doubts don't creep back into my mind around each MRI, I'd be lying to you to say otherwise.  In fairness to our health care professionals, they can't really assure us 100% of any of us being "free" on a permanent basis.  This sucks but it is what it is - I wish I could tell you otherwise.  REgardless, I've made it to a stage now where I try to accept that what is the case "right now" as in "well I"m "free" right now.  Really, it also feels like a 6 month "pass".  I'll take it!

So my hope for you is that your surgeon was correct, got everything and it's gone.  I hope it remains "gone", however it's only a "hope" like i hope for myself.  Again - given the alternative - I'll take it :)  Hope that was (somewhat) helpful!
 

Re: Are We Ever Cancer Free?

Posted by jorola on Feb 3, 2017 8:25 pm

Hi Brenda,
You ask a good question. It is one I often ask. My husband was diagnosed with stage 3b lung cancer and only given a 10% chance to live out the year. Instead at the end of the year he was pronounced NED - no evidence of disease. Does that mean that is the end of it? Like mchesher says scans every six months for us means six months cancer free, until the next scan. Then scanxiety, as they call it, kicks in until we hear the news - is it back? is it still gone?
Do I have a real answer for you? I guess it is almost similar to mchesher's. We have learn to accept cancer as part of our lives, yet we do not want to let it control our lives. We live on.  Acceptance I guess. No one can know the future so live life to the fullest. We all really should anyway. Does that mean you won't have moments were you have doubts or fear? Of course you will. You are human.
But I also believe in good communication with doctors. Talk with your doctor about how you are feeling and what to expect. Also if continues to bother you, I encourage you to seek counseling. Again, do not let cancer control you. Take the the power back. That is how you become cancer free - whether you have the disease or not.
 

Re: Are We Ever Cancer Free?

Posted by Kitch on Feb 4, 2017 11:42 am

I agree with the previous statements that I am free for now.  I just passed the 5 year mark from my surgery for breast cancer.  I still have 5 months of letrozole to finish and then my official treatments are finished.  For the past 4 years every time It would get close to a 6 month check up date I would spend time being anxious about every ache and weird sensation.  I think there is a fine line between vigilance and paranoia which I walk and I assume (or at least hope) causes less anxiety with time.  We are the fortunate ones who have gotten to move forward and we need to celebrate each day we have to be a difference maker.

Re: Are We Ever Cancer Free?

Posted by Survivor96 on Feb 4, 2017 6:25 pm

I just want to say thank you for your replies about my question are we ever cancer free.  I'm currently not on any schedule for scans; my last scan was for bone density as I was getting an injection every month to put my body into menopause.  That was in October 2016.  
I just have to accept the fact that I had cancer, I survived and every day from now on is truly a blessing; one day at a time I guess.  Thank you again, greatly appreciated!

Re: Are We Ever Cancer Free?

Posted by mchesher on Feb 13, 2017 1:38 pm

well i think i touched on it above but regardless, have my 6 month MRI tonight.  It's almost funny (better to laugh than cry in my opinion) but the whole day is a bit off, my wife seems off and I sure as heck feel a bit off.  Why I say it's almost "funny" is that I don't find out a thing either way today, just go and get the MRI done and go home.  Odd how it kicks up the setiments of old emotions and thoughts.  Anyhow thankfully they only do MRIs on my brain now - being in the MRI tube for 20-30 minutes is fine.  I only had to have my whole spine done and it was 2+ hours - that was not fine in comparison! 

Re: Are We Ever Cancer Free?

Posted by Lacey_adminCCS on Feb 13, 2017 9:30 pm

Hey Mchesher, 

Definitely understandable that it kicks up old feelings and fears. Sending positive vibes, keep us posted on the results. 

I hope it went ok tonight, 
Lacey

Re: Are We Ever Cancer Free?

Posted by Lost on Feb 13, 2017 10:08 pm

Personally for me, I have yet to be told that I am cancer free. This coming May will be two years since being treated. Since my cancer I have read where a couple of celebrities Brett Hart and Ben Stiller have the same cancer as I..For some reason they were able to say a month or two after being treated that they were cancer free. When I saw that, I wondered why my oncologist did not tell me the same thing. Anyway, I am to have my PSA tested every 6 months. I did that for the first year. Yet noone has discussed the results with me...left to wonder on my own I suppose. My last PSA test was due this past November but I skipped it...not sure why I have chosen to skip it..Next one (2 year mark) is due this coming May. I am somewhat apprehensive about getting it done, only because I am not sure what can be done if it is not at the mark the onoclogist suggested it should be by year two. But all in all, i believe that there are people that can actually say they are cancer free...

Re: Are We Ever Cancer Free?

Posted by mchesher on Feb 14, 2017 9:06 am



Lacey_adminCCS:
Hey Mchesher, 

Definitely understandable that it kicks up old feelings and fears. Sending positive vibes, keep us posted on the results. 

I hope it went ok tonight, 
Lacey


Well MRI is done - oncologist meeting next week.  Anyhow went as smoothly as these things can go.  As for Lost, I haven't been told in those words ever myself either for what it's worth.  I've been told the "tumor" is gone but never that i'm "free" - as reassuring as those words might be, it also may open up your oncologist to liability of some sort if something terrible happens down the road.  All I can say re: your next PSA is to try not to hypothesize about what it could and couldn't be at this point - and to use a golf term, to "play it as it lies".  Also hoping for the best for you!
 

Re: Are We Ever Cancer Free?

Posted by Lost on Feb 14, 2017 9:33 am


​Thanks for the advice mchesher. I am kind of going this alone at this point. I don't have confidence in my GP clinic (too long a story) but at the one year mark I found out that for whatever reason I have no access to my Oncologist. I'm basically left to surmise on my own health and prognosis.

Re: Are We Ever Cancer Free?

Posted by Lacey_adminCCS on Feb 14, 2017 10:42 am

Hey Lost,

I'm sorry to hear you're feeling alone. It can be difficult when you no longer are seeing an Oncologist regularly especially if you don't trust your GP. Many people struggle with this change. In a sense it can be seen as good news that you no longer need to follow up with them.

Have you considered looking for a new doctor? I know they can be hard to find, but maybe worth getting on some waiting lists if you're not happy? I just don't want to see you left alone to deal with things. 

It's nice to have you sharing again, you're a skilled writer.

Lacey

Re: Are We Ever Cancer Free?

Posted by sundog on Mar 17, 2017 8:43 pm

I have been told by my oncologist that I will never be "cancer free".  He says at some point the cancer (ovarian) will recur. My nurse said it's like spraying dandelions with Round-up. You never get all the dandelions. This has been difficult to deal with, but I am dealing better due to the successes I read about here. I appreciate the line from jorola‍ and I hope to take the power back and not let cancer control me. I'm  working on it!

Re: Are We Ever Cancer Free?

Posted by Addie on Mar 18, 2017 11:23 am

Dear sundog‍ - That is a really good analogy about the dandelions. I am in the same boat with small cell lung cancer. I have been good for a year now, not gone but stable. and hope to continue this way and defy odds. Spring is coming, and I can dress down and garden.

Re: Are We Ever Cancer Free?

Posted by Orchid1 on Mar 19, 2017 11:10 am

I had asked my surgeon, how do people know they are cancer free? She said, well, at the point in time that a test was done and no cancer detected, then they are told that, but it is only for that moment. So I have never used that term.  I too do not get regular scans or test, like Brenda, I was told I will know if it is back.  I'm not crazy with that method, why not catch it before I feel ill? My oncologist says the scans cause too much anxiety. In my opinion it would be worth it to hear the words no cancer detected this time. I wonder if it has more to do with the costs of the scans and tests. 

I had estrogen positive breast cancer so I am on hormone therapy and will see my oncologist annually as long as I am on them. Six years ago when I was diagnosed, I was to be on them for 10 years. On my last visit I mentioned I see people saying they have a recurrence at 12-13 years and he said yes and now they use hormone therapy for 15 years. Who knows at 15 years if it will be for life. 

I worry  less about recurrence each year it seems, although like everyone, it is in the back of my head and it seeps forward periodically, but I put it away again and reflect on how far I have come. 

I wish everyone well well on their journey. 
 

Re: Are We Ever Cancer Free?

Posted by Survived99 on Mar 20, 2017 8:04 am

My oncologist said that I was cancer-free at the end of treatment but that BC can come back again, even many years later. Triple-negative BC wasn't a 'thing' in 2000 as they didn't routinely test for HER2 neu. Once I had my mastectomy I felt that my cancer was gone - in a *crosses fingers* kind of way. (Not sure that makes sense.)

What bothered me was people asking me if I was in 'remission' after many years. Don't know why, but in my mind it meant that I was just biding time before it returned and I was trying to stay positive.  

Re: Are We Ever Cancer Free?

Posted by Norma on Mar 20, 2017 9:00 pm

  1. Hi There,  I feel like I have had the same question and concerns, it seems some drs will say cancer free and others not, I only met with oncologist once then the nurse practitioners, when I asked her about cancer  free she said as far as we know now and can see in mammo, etc looks clear, but said there is no scan  known to man that can detect stray cancer cells, plus I am high risk
for recurrence! So for know things look ok! Wanted to hear those words cancer free so badly, but I think they cover themselves by not saying those words! 
Also in regards to follow up tests scans, why not give us them more periodically, I would rather know sooner, or when a tumor is  small then when it's too late, scan anxiety (scanxiety), would much rather, good news that scan is clear, even if a bit anxious, also was told that they didn't want to expose me to more radiation, well I had 30 rounds what's one or two more tests, I believe cost is a major  factor, but won't it cost way more after with more treatment! Anyways I'm with ya!! Is preventative better!!! Just have to stay on top of things! Hopeful!!!!!!
 

Re: Are We Ever Cancer Free?

Posted by on Mar 20, 2017 9:47 pm

I'm joining in the conversation of "are we ever cancer free?"
when I was at the cancer agency undergoing radiation, I met a mother and her daughter who had both had breast cancer and the daughter declared themselves cancer free...
one thing to consider is that everybody has some cancer cells in their bodies and it is up to the immune system to fight them off before they can establish themselves in someone's body...
cancer cells are previously normals cells that have mutated and the DNA does not give out the right instructions to destroy damaged cells...cancer cells are cells that keep dividing and do not know how to die...a healthy cell will die when damaged...but cancer cells do not die when damaged...they keep dividing and that's how cancerous tumors develop...I currently see my oncologist every 3 months for my ovarian cancer and I never get scanned for those checkups...I am supposed to rely on bodily changes like pain and bloating and also weight change, which all could signal the return of the cancer...this does not bother me...I believe I will know when the cancer is back...I think that the radiation from scans could encourage cancer growth, although I know we have been treated with radiation as part of our treatment...the term "cancer free" is reassuring but I don't think we should allow ourselves to think that we can be completely cancer free when we live in an environment that is so polluted and there are so many chemicals and other things in our environment that can cause cancer...currently, cancer is a global epidemic, with 50 percent of the world's population at risk to get cancer...currently, in my province in Canada, one out of three people will come down with cancer at some time in their lives...

Re: Are We Ever Cancer Free?

Posted by jorola on Mar 21, 2017 8:50 pm

I understand the scanxiety yet wanting to have them for reassurance. I mean I would love to know minute to minute what is happen's inside my husband's chest. However there is a flip side to them. The scans are a form of radiation. Too many of them and you end up undoing everything you just fought to get rid of.. My husband's onc told us yes you can get cancer from having too many scans. So he is weaning him off. Instead of a ct scan every 6 months it is now an xray then six months later a scan then six months later an x-ray. FYI one CT scan is equivilant to about 200 x-rays. Personally, I do not think it is a cost thing. We truly trust my husband's onc and feel he really has his best interest at heart on this one.

Re: Are We Ever Cancer Free?

Posted by on Mar 21, 2017 10:46 pm

thanks for the feedback, jorola...I didn't know that one CT scan is equal to two hundred x-rays...I think I have had two CT scans and one PET scan...

Re: Are We Ever Cancer Free?

Posted by Hairball on Apr 10, 2017 9:29 am

My onco told me that my particular cancer (Invasive Lobular) had been in there, growing, undetected, for probably 7 years. That blows me away. Now I dont even entertain the idea of whether or not I am cancer free, I tell myself (and those who ask) that I am currently NED (No Evidence of Disease) and I am comfortable with that. 

Re: Are We Ever Cancer Free?

Posted by Windancer on Apr 10, 2017 4:34 pm

Personally I think the words "Cancer Free" is somewhat of an oxymoron, IMO everyone has cancer and our bodies decide whether or not it becomes active or not. I prefer to think of it as my cancer is in remision, I am a 3x survivor and the word Cancer will always be in my vocabulary. But that's not to say it is a "death sentence", I have endured horrendous crap in my 15 year battle with this disease, surgery, 2 stem cell transplants, yet today I lead a very healthy and active lifestyle. just read the stories about me. I certainly am a survivor and my results are not indicitive of someone else. My mantra for my life is in my signature below.

Terry
"Never Give Up, Go Around, Go Over, Go Through but Never Ever Give Up".

Re: Are We Ever Cancer Free?

Posted by Ttjia on Apr 14, 2017 11:15 pm

I was told there was no test available that could detect my type of cancer clear cell an agressive rare form at this time I would have to rely on my body to tell me if something was wrong like pain and bloating. I do have an appt with oncologist in October for follow up. I was told there was a good chance they got it all with radiation, I will have to go with that because there is no recourse. I do feel you are thrown out there alone because you can never be sure with cancer. I was told once I was cancer free, not the case they found this other cancer, My cancer was found in the tissue after historectomy for endrometrial cancer. Guess you just have to believe everything will be fine. I find waiting for your body to tell a bit scarey, my brother in laws cancer started with his legs bloating. He was told he had a manageable but not curable cancer. He passed away a few months later. 
Ttjia

Re: Are We Ever Cancer Free?

Posted by Kay.C on Apr 18, 2017 12:50 pm

When I went for my one year follow up, my doctor only did a physical exam, no tests and claimed I was cancer free! I do detest that phrase since it gives false hope. That was 6 months ago and here I am waiting on results from another biopsy for a different type of cancer. One of the gals on here last year said it best..."Treatment Free".
The way I see it, I was given a wake up call the first time I was diagnosed to start living, should I be diagnosed again then I'll just have to live harder!
 

Re: Are We Ever Cancer Free?

Posted by sundog on Apr 18, 2017 7:32 pm

I like what Kay.C‍ said about living harder! My oncologist is fairly blunt, telling me that I will never be "cancer free". I will be living with ovarian cancer for the rest of my life. I have appreciated his candor, once I recovered from the bluntness, as I have read about others who have a recurrence and were not warned about it. I have had chemo and surgery, and until I have that recurrence, I will be living as hard as I can!

Re: Are We Ever Cancer Free?

Posted by Kay.C on Apr 19, 2017 10:21 am

sundog,
We have the upper hand, we know whats coming. So many people go through life without living expexting to kick into high gear when they retire....Why wait? Do it now! So proud of your positive attitude