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How do you know its gone?

How do you know its gone?

Posted by dmarie on Oct 16, 2019 4:30 pm

People write they are NED or that they have been cancer free for 2 years. How do they know this?

I am just finishing my first year in the cancer community. After being diagnosed with breast cancer last fall I had surgery (mastectomy), chemo and radiation and am now on Anastrozole for 5 years. At my follow up appointments with the surgeon, oncologist and radiologist I asked “What now?”. In each case I was told “Well you will get a mammogram on your remaining breast each year but you can certainly call if you notice any symptoms”.  I pointed out that a mammogram had not caught the first cancer as i have dense breast tissue and it certainly wouldn’t find cancer in any other part of my body, so what about ultrasound or a CT scan or maybe an MRI?  The response was that they don’t order any of those things unless I have another lump or some other sign that the cancer has come back. 

I would like to know what kind of follow ups other breast cancer survivors are getting? Is this just a Manitoba issue ?   I would love to say that I have no evidence of disease but how do I know that?

Re: How do you know its gone?

Posted by Buffythevampire on Oct 16, 2019 6:24 pm

dmarie‍ I was wondering the same thing also. In my case I know the tumor is gone because it was removed during the mastectomy surgery. I asked my oncologist if she knew whether the chemo worked or not and she said you don't know unless you start getting sick. I thought perhaps that "NED" isn't an expression that Canadians use but rather American's or other's.
Where I live mammogram's are done yearly but if something was found then they get done every 6 months or they get done every 2 years. And I have dense breast's too and mine wasn't found during a mammogram or ultrasound either. An MRI found the 2.5 cm tumor. 
Hopefully someone on this group will know the answer to your question, then I can find out too.

Re: How do you know its gone?

Posted by Lianne_Moderator on Oct 16, 2019 7:07 pm

Hi dmarie‍ and Buffythevampire‍ 

This is often the million dollar question. I don't pretend to be a medical professional or the like, but I will tell you what I know as it was told to me by my oncologist as it pertains to me.. I was diagnosed with IDC breast cancer with spread to lymph nodes in 2010. I had surgery - the intent of which is to remove the cancer.. That was followed by chemo - the intent was to get any rogue cancer cells that may have found itself a place to hang out after spreading to nodes, and then radiation - the intent of which to lower the risk of it coming back - an insurance plan so to speak. ( Chemo and radiation are used in different ways for different cancers and different patients - this is just what the intent was for my specific situation )\
When I was all done treatment I was looking for some test of some kind with a certificate saying - you are cancer free. I was bummed out to find that just does not happen. The treatments I had were intended to get rid of the cancer and by all accounts they did.
So I can say i am NED ( or cancer free if one prefers ) for 8.5 years. 
The yearly mammogram is to keep on top of it in the event of a new development. Or in my case thus far, reassurance it is still not evident.  I am in BC btw.

I hope that helps a little bit


Re: How do you know its gone?

Posted by Essjay on Oct 17, 2019 9:46 am

Hi dmarie‍ I’m n Manitoba too - and like you have dense breasts. I questioned the value of mammograms in my situation because of dense breasts. I was told only those with the BRCA gene get MRIs in Manitoba, and they don’t do ultrasound routinely. I have my first follow up mammogram next month so we‘ll see how that goes!
I had TNBC which tends to recur remotely rather than locally so I also questioned how I would be monitored - my medical oncologist will discharge me to the care of my family physician at my next visit. Does my family physician know what to keep and eye out for because I don’t, and she’s only going to check me over if I go and see her. I’m not one for doctor’s visits and I tend to ignore things, or minimize their significance. 
It’s all a bit vague and uncertain, and yet so important!
Triple Negative Breast Cancer survivor since July 2018

Re: How do you know its gone?

Posted by Kims1961 on Oct 17, 2019 12:16 pm

Such a great question Buffythevampire‍ and dmarie‍ ....Like you, I wondered the same.  I finished "active" treatment for IDC, now just on Tamoxefin - but no one gave me the NED...like Lianne_adminCCS‍ stated - I thought there would be some certificate? party?  celebration?   lol....

So...I asked my oncologist.  She seemed surprised by the question but basically said I would be considered NED now, as they have given me all of the treatment required to deal with my primary cancer.  She also said the NED time frame goes back to when i was first diagnosed - as long as no new cancer was found - it means they treated and removed the cancer that was found and no new evidence of disease appeared. So - in fact i have been NED for 2 years when i didn't even think I was NED at all....

It may just be semantics but just to be able to say this - even if tomorrow the cancer resurfaces - was encouraging.    Great question to ask your oncologist - let us know what they say.

Maybe I'll use the designation of NED in my signature line from now on...ha ha...

Take care,
Kim  N.E.D.
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: How do you know its gone?

Posted by Mammabear on Oct 17, 2019 12:25 pm

I know I am late to this discussion but your BC is not likely to return in your breasts so I am not sure why all the focus on your annual mammograms. My triple positive returned in my liver. I was almost at my 5 year mark and was considered 'cured' before then because I was stage 1 at diagnosis (< 2 cm and my lymph nodes were clear). BC is likely to return in Bone, Brain, Liver, Lungs (in that order). So be on the lookout for ANY symptoms relating to those cancer types  (fatigue, pain, weight loss, cough, etc.). I have been told I am an unusual case because I was asymptomatic (had some fatigue) and I was after the 3 year mark (triple positive likes to come back within 3 years). In round 1 I did 15 months of chemo (including 1 year of herceptin) and was on tomoxifen) yet my new tumours are VERY HER2+ and VERY estrogen+ so something didn't work. When mine was discovered my liver was failing and I needed chemo within days to live. The car has now turned around and they say they can get me into remission and keep me there for many years but it does mean monthly infusions of herceptin and purtuzumab for life. Be vigilant!!! 

Re: How do you know its gone?

Posted by dmarie on Oct 18, 2019 9:04 am

Mammabear‍ is a good example of why we need more than a mammogram. When the cancer was first diagnosed I was given a full body CT scan and a bone scan to see if it had spread anywhere. Why don't they give us those tests on an ongoing basis? Like Essjay‍ I tend not to go to the doctor with every little pain or cough but I can see that I may have to start making a nuisance of myself. Wouldn't it be better and more cost efficient to have scheduled annual scans than be seeing a doctor every month or two? 

Re: How do you know its gone?

Posted by Runner Girl on Oct 18, 2019 9:46 am

This conversation really hits a cord with me.  I've finished my treatment, last herceptin was in August, just taking tamoxifen daily.  I had my follow up mammogram in April and it showed nothing.  I had asked my GP to also do an ultrasound and he refused.  My oncologist told me all was good.  My radiation oncologist told me my breasts were extremely dense and the mammogram was largely ineffective so he wanted me to have an ultrasound.  I had the ultrasound and they found 2 lesions in my left breast (cancer was in the right).  It also found that the tumor bed where my cancer had been was empty - YAY!!  My GP admonished me for calling his office to see about the results.  My oncologist says they are too small to find right now and he doubts they are cancer, so no biopsy right now.  We settled on another mammogram/ultrasound in January.  So I'm playing the waiting game, trying not to let it get to me.  Is my cancer gone, I did all the treatment, is this just nothing - I don't know.  I don't like the way I've been dismissed by my doctors and how they are so willing to accept the mammogram results when my density is Grade D.  

I find myself asking myself all the time - is it gone?  It seems it's gone from where it was, but did it resurface elsewhere?

We'll find out in February when I see the oncologist again after the ultrasound.  In the meantime I'm starting with a Naturopath who specializes in cancer later this month.  I don't want it to come back and I hope she can provide me with a good plan.

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

Re: How do you know its gone?

Posted by Mammabear on Oct 18, 2019 11:14 pm

The problem with regular scans is the massive amounts of cancer causing radiation they give you. CTs and PETs are not to be done lightly. Annual blood work with tumour markers would be less intrusive and less expensive. I would worry less about the dense breasts and it coming back there and focus on how you are feeling. Naturapath, eat right, exercise and note anything that is out of the norm as you develop your new normal post treatment. The mind is terrible. Every ache and pain is cancer. Easier said than done but try not to dwell on it. if a symptom persists (abdominal pain, coughing, bone pain, weight loss, headaches, vision issues, etc.). Triple pos is aggressive and fast growing and likes to come back within 3 years (from diagnosis). They don't know why some people seem Herceptin resistant like mine was. Research is going in on this area. 

Re: How do you know its gone?

Posted by Lynda D on Oct 19, 2019 1:04 pm

who’s your naturalpath?? I am looking for a good one post uterine cancer.
thanks Lynda 

Re: How do you know its gone?

Posted by cancertakesflight on Oct 29, 2019 7:41 am

Hi everyone. I can tell this is a really important topic. I have the same concerns as all of you. I have dense breasts tòo and while there was the suspicion that something was wrong after the mammogram it took many tests, including an MRI, to clear picture of the extent of it. I am going to tag jennie‍ since she is one of the co-founders of Dense Breasts Canada. She is working to have breast density part of the test results. I am not sure where the legislation stands in all the provinces. I am hoping that she can give you some suggestions about what you can do to get the tests you need.

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

Re: How do you know its gone?

Posted by Marsh on Nov 14, 2019 4:43 pm

Wow what a great question!! I finished chemo end of July and Radiation early October.  I have wondered about this same question almost daily! After reading all the responses I feel lucky now that I have a Zometa infusion every 6 months. I have blood work done before each one and on the day of my infusion I also see my Oncologist. Without it all I'd get are annual mammograms and checkups. I was a little disappointed when all my treatments were over that no one talked to me about what was next or that I was good to go etc. It was like "OK treatment is done. You're on your own now!!!"  I must say though that my GP has been wonderful. He called me in just to chat give me some encouragement! As well as a Flu shot while I was there! He is keeping up to date on my progress and that makes me feel good!

Re: How do you know its gone?

Posted by scaredysquirrel on Jan 29, 2020 2:24 am

Like a few here, I have dense breasts and it was very difficult for the Mammogram technicians to find my cancer again after my first exam.  They did a needle biopsy.  I guess we just have to trust that the cancer is gone, I'm relying on my yearly mammograms.  I'm still under an Oncologist care and taking Letrozole. I have a couple more years to go, so not out of the woods yet.  Good luck everyone.

Re: How do you know its gone?

Posted by DonnaB on Jan 30, 2020 3:45 pm

You don’t.   And you never will be 100% certain. Thst is the same for you as for your neighbours and that lady on the bus and every one you see.   You never will know for sure - but you sure have a leg up on all of those other people in that YOU are being tested every now and then whereas your neighbours or the lady on the bus has no idea what sort of cells are running around in their body.    Your new goal is NED - No Evidence of Disease.   That is as good as it gets.  That in the gold standard in the cancer world.   Be very happy to see that result!

Living with a certain amount of uncertainty is normal.  Does the person who will have a heart attack tomorrow have any idea of what is coming?  Nope.  Same for accidents, etc. 

in a way, cancer patients with NED have had one variable removed vs your neighbours or the lady on the bus 

Something to think about.   


Re: How do you know its gone?

Posted by KerriKerri on May 11, 2020 7:19 pm

Anastrozole is the drug they are discussing putting me on.  I am not thrilled. How have you found it?


Re: How do you know its gone?

Posted by dmarie on May 13, 2020 11:40 am

Hi KerriKerri‍ 
I have been on Anastrozole for almost a year now and will be on it for at least 5 years. It has not been too bad for me. Earlier on I had headaches at least once per week and some minor bone pain. I do feel cold a lot which may or may not be a side effect. There was a bit of ankle swelling last fall but none lately. The only thing that really worries me at all is the possibility of weakened bones. I am very thin boned and Anastrozole often causes Osteoporosis.
I had a bone density scan before I started on the drug and the plan is to redo that every 28 months. I may try to get that bumped to every 12 months is at all possible. I do a lot of walking, some weight training and make sure I get lots of calcium and vitamin D. 
Take care.

Re: How do you know its gone?

Posted by KerriKerri on May 13, 2020 12:29 pm

This thread really hits home as I ponder whether to go Holistic or conventional. Seems to me it's equally uncertain no matter which way you choose.


Re: How do you know its gone?

Posted by Wendy Tea on May 13, 2020 12:58 pm

KerriKerri‍  In my humble opinion,  the traditional medical system has trials, tests, and data to prove their methodology is successful.  What backs up holistic medicine? Do they do double blind studies?  Curious. Just because someone means well doesn't mean they will be successful. Food for thought.  And does it have to be either or? Can they be done simultaneously with the approval of the oncologist?
Healing takes time and opportunity. Wendy Tea

Re: How do you know its gone?

Posted by Kims1961 on May 13, 2020 1:17 pm

KerriKerri‍ Your question about anastrozole is a good one.  I started on Letrozole - but found I had very difficult side effects.  I'm not one for taking more medications than are necessary - so found cancer treatment difficult with chemo/radiation , and pain meds!!  But, after discussing my situation with my oncologist, I felt comfortable with her recommendations.  So , I moved from Letrozole to Tamoxifen. 

The good thing about hormone therapy was that I could stop if I wanted.  If I found it was really affecting my quality of life.  What helped with my transition to Tamoxifen, was complimentary therapies.  What were some approved supplements/treatments that could help me with my side effects?  I checked with my oncologist first and the pharmacist and was able to come up with some remedies that helped with any side effects from tamoxifen. Interestingly, I also had an appt. with my family doctor for an unrelated matter, so also got his opinion , as he knew my health history for many years and what was important to me.

Everyone is different and can respond differently.  I know I had "atypical" side effects from Letrozole - so that was challenging. Communication really helped.

Thank you for posting this question.  Good luck with your decision.
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: How do you know its gone?

Posted by KerriKerri on May 13, 2020 1:21 pm

By no means does it have to be either or. I would run away from anyone who said that or tried to persuade that it had to be. I think that some lifestyle changes might be beneficial regardless. Diet is a relatively easy one to start with I think, for most people. But I've known people who were apparently doing all the right things and still came down with cancer. Or heart attacks. or whatever.

It's a matter of sifting through a lot of information.


Re: How do you know its gone?

Posted by Lacey_Moderator on May 14, 2020 11:32 am

Some great discussion here!

KerriKerri‍ - I think it is so valuable to gather information from other people's experiences like you're doing here. It can help you weigh your options, anticipate what to expect, and compliment the information you get from your health care team. That being said side effects are so individual. As demonstrated above sometimes it's trial and error and people try a few different meds. Sometimes people start a treatment and choose to stop due to side effects.

I recognize that my disclaimer doesn't help you make a decision lol...but I still hope its helpful. If that makes sense.

Great getting to know you through your posts Kerri.