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Cancer Survivor titled???

Cancer Survivor titled???

Posted by Rene on Aug 26, 2020 11:54 am

I am here to ask if anyone can tell me clearly after some trying time to find a blog that said a person was confused with which title to use.

When the Doctor says you are cancer-FREE, but still going through treatment/ or reconstruction. Including still taking oral chemo meds, I've noticed friends are confused with why am I taking the meds, going for tests since I said I was "cancer-FREE"...I have explained that I am to take oral chemo meds for 5 years, to prevent cancer from returning. Is it me or them not keen or not very good concept of what a cancer patient & their meds/ treatment.?

Can someone help me out here please and thanks! 

Quinn

Re: Cancer Survivor titled???

Posted by Runner Girl on Aug 26, 2020 3:02 pm

Hi Quinn‍ ,

I'm glad you were given the title "Cancer Free".  That is a good thing.  To me that means that your active cancer is GONE!  You are however, still in treatment and will be for a few years it looks like.  The treatment and ongoing tests are to maintain your cancer free status.  Much like my daily tamoxifen and 6 month follow up ultrasounds help me maintain the cancer free status bestowed on me in February, 2020.  

I hope this helps clarify a bit.

Runner Girl
Never stop believing in HOPE because MIRACLES happen every day!

Re: Cancer Survivor titled???

Posted by Kims1961 on Aug 26, 2020 11:14 pm

Quinn‍  Good question...to add to this some of us get the phrase “ NED - no evidence of disease”. 

My Oncologist said that clock starts ticking towards NED - once it is diagnosed and no new tumours /cancer if found. So when i finished active treatment of chemo and radiation - I was actually already a year of NED.  I will be on tamoxifen for 10 years.  

This may just muddy the waters but I think we can call ourselves whatever feels comfortable to us.  It’s our journey, our cancer and our terminology to use.

Congrats to you!  Kim
 
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Cancer Survivor titled???

Posted by cancertakesflight on Aug 26, 2020 11:49 pm

Quinn‍ You are not the only person to be confused about a title. Different words mean different things to different people. As Kims1961‍ said, some people use the term NED to indicate that there is nothing in your test results that indicate you have cancer. Some people will use cancer-free while others are suspicious about using that title because no one can really look at all the cells in your body to know that there is no cancer still there. Even the term survivor can cause some conflict. Some people see themselves as a survivor and others don't. As a cancer patient when there canceranniversary is and you will get a variety of answers. Some believe it is their date of diagnosis, others the day of the surgery, others the date of their last treatment. From a statistics perspective, the diagnosis date is what is used to calculate survival rates. For many women, they don't care about the statistics, they choose the date that is most significant to them. 

As Kims1961‍ indicated, you have to choose the title that is right for you. There are no right or wrong answers. 

cancertakesflight
Laughter is a lifestyle choice. www.laughterandcancer.com/blog

Re: Cancer Survivor titled???

Posted by Rene on Aug 27, 2020 11:34 am

Thank you cancertakesflightKims1961‍ 

For clarifying something that left me very confused, but now that I understand and know what's the right way to state my health as "Cancer-FREE". I have been told that once the cancer is gone, chances are that it can return. For the time being I just say that I am Cancer-FREE, will continue the meds to the end of treatment in 5th year, but I don't celebrate, just said a prayer of heart-felt thanks, and ask for the same for my other brothers and sisters out there to be Cancer-FREE.

Quinn

Re: Cancer Survivor titled???

Posted by jobo on Aug 28, 2020 4:37 pm

cancertakesflight‍   I appreciated your outlining the different  ways people define their anniversary, because I have been wondering the same thing myself.  Even further, though, I have been wondering about how the "date of diagnosis" is defined, which you say is used statistically to calculate survival rates.  In my case, I first had an ultrasound which suggested uterine cancer, then a CT scan 9 days later showed ovarian cancer, a biopsy a week after that confirmed carcinosarcoma, as did the path report from the surgery 2 weeks after that.  I've been thinking that the CT scan is my date of diagnosis, since that's the first time ovarian cancer was demonstrated, but I'm wondering what the statisticians would use?