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WAS TOLD CANCER FREE BUT....MANY DOUBTS!!
Nicky01
162 Posts
I was told on October 8 that I am now cancer free and that I need no treatments but a little problem surfaced I had developed something I was told is very rare....a lung hernia for which I had surgery yesterday to get it fixed I was having all kind of wonderful emotions when I first heard the words CANCER FREE, best diagnostic outcome I thought. Yesterday waiting in the hallway outside of the operating room for 45 minutes my mind suddenly went I think to some strange places and questions started popping up in my head because I was talking to a doctor in training who was asking me a bunch of questions about me and my lifestyle and those darn questions about smoking came up again....are you or were you a smoker? Yes but I stop smoking 20 years ago! How many years did you smoke? 30 years!! How old were you when you started smoking? I was 15 years old! How much did you smoke, one pack two packs a day, more or less? I smoked half a pack a day and this is the last question I will answer about my ex smoking habit because after doing some research I have learned that the kind of cancer I have is often seen in people who work in the construction industry and that’s the work I did most of my life and besides that not all lung cancer should be judged on the fact of whether a person is or was a smoker because some people who never smoked also do get lung cancer! He apologized and said that those are standard questions when someone has lung cancer!! 

All that did for me was making me doubt my CANCER FREE diagnostic from a few days ago, he had just burst my happy bubble because when he left I started thinking if my cancer was really caused by the kind of work I did I probably now have more chances of having another kind of cancer because I am an ex smoker also is it normal that after a cancer free diagnostic I still feel that, that cancer is going to follow me for the rest of my life? I am filled with a lot of doubts and questions since yesterday??? I also tried to remember that the doctor told me he was in training therefor he still probably has  a lot to learn and what I had just told him maybe was going to be part of his learning and training process when dealing with lung cancer patients....I don’t quite remember but I think it’s @westcoastsailor who wrote something like.... everybody has lungs so anybody can have lung cancer!! What do I or should I say now....I have cancer or I had cancer? Which category do I fall into? Am I nuts to be thinking this way? Do I just say let’s put it behind me and not think about it anymore? Impossible to forget about all those stressful months I feel they will be part of my life for ever has will the word cancer!!

I feel bad and kind of selfish for having so many doubts after receiving such wonderful and reassuring news this past Thursday specially when so many people in this group are still either waging or loosing their battle against that dreaded disease that is cancer! In any case feel free to tell me I am wrong if you think I am, I just felt like I needed to get rid of all those self doubts by putting them down in words and try to see more clearly what do I do with all those feelings, should I just try to put them in a corner of my mind and not think about it anymore even if I think it is an almost impossible thing to do specially when I know that in three months I have a scan to go for a follow up??


 
10 Replies
supersu
53 Posts
Nicky01‍ 

hope that the procedure for your herniated lung went well -- never heard of that one before!  

GREAT POST!

how wonderful to think, for even a short short time, that you are CANCER FREE!  I never did have the super awesome news that I am cancer free, in fact I was told absolutely nothing by my team.  when radiation was over---that was it--bye bye!
so I wait for my follow up scans in December.  don't know what to say when asked the question re: cancer status.  I honestly don't have a clue!!!!

what a crazy thing this all is -- you and I have very different diseases, yet we are experiencing the exact same doubts!!  interesting that in all the years that these medical professionals have been working on cancer care they still, (IMHO), don't have the patient communication bit finessed yet!

I hope you have a great next few months, and that the 3 month scans go well.
keep us posted

cheers
su
Charles
93 Posts
Nicky --

I think any doctor who says "You're cancer-free" is sliding around the truth.

What the doc _should_ say is:

. . . "I see no evidence of disease."

That's abbreviated to "NED".  It doesn't mean that you absolutely won't have a recurrence (although the probability of recurrence may be very low), or that you won't develop some unrelated cancer, later in your life.

There are no guarantees, in this line of work.  There are only probabilities.

.    charles
 
Boby1511
292 Posts
Nicky01‍ 

I have a rare incurable disease that is going to kill me... eventually. 
lol. Seems so bizarre to me sometimes... like I'm the main character in a bad cartoon.

Your smoking/job thoughts... You hear about HPV testing? One of my first questions to my specialist. Could I have been more proactive? Like this was my fault somehow.
He assured me my type of cancer does not fall under the HPV testing as I have sarcoma cancer which originated in the uterine and not uterine cancer. But does this really matter now? Or matter even then?
Anyways, it could be the wrong chicken or eating bad jube jubes. It is what it is.
(not advocating to not be proactive. testing good. just mean to say once its here its here. I can't change the outcome at this point. get tested! lol)

I'm happy for you that you are NED 😏.
I think once you have cancer, it's always going be a little voice in the back of your mind.... what if... I wouldn't beat yourself up about it.
But you are truely blessed today. I would love to be NED... such a dream. Love to ring that virtual bell... 

Strangely I feel kinda guilty that my tumour didn't grow on last scan. lol. Not sure how that one works. Survivor guilt maybe?
It occurred to me that maybe it's like when you first get diagnosed with cancer... you eventually get used to it.
Maybe getting used to being healthy takes a similar path to acceptance?

I have no words of wisdom, just wanted to share that I'm with you. Hope the hernia surgery went well (I too have a hernia.. stomach area). Hugs
Nicky01‍ 

I'm so glad you wrote about it, got it off your chest, I hope it helped take away some of the fear. 

Fear of recurrence is real. It often doesn't take long for it to creep up and steal our joy. A technique I have heard people use is focus on what you know to be true TODAY. Also often times our perceived risk of recurrence is higher than our actual risk. Knowing your actual risk is important. Have you seen our webinar on fear of recurrence? Here it is: https://www.bigmarker.com/CCS-SCC/Fear-of-cancer-recurrence-during-COVID-19?utm_bmcr_source=CancerConnection&utm_source=CancerConnection&utm_medium=referral&utm_content=covid19webinar.

You're not alone, take a deep breath.

Hugs,
Lacey

 
Nicky01
162 Posts

Hi, thank you supersu‍ , Charles‍ , Boby1511‍ , Lacey_Moderator‍ for all your kind words!! I am actually doing fairly well!! It’s been harder this time around, I feel so much more tired than I did after the first surgery. I spoke to my doctor two days ago and was told that the way I am feeling was to be expected after having two anesthesia and two surgeries in such a short time. This surgery has put me back a bit behind all the progress I had already made, I tried to go for a walk yesterday morning and could not even do one km and I was dead tired.  But no worries after receiving the ok from one of my doctors today I will start with my daily walks and exercises routine again next week because it would be a shame for me to start wallowing in self-pity after being given such great news of my NED diagnostic and no treatments needed.....not cancer free diagnostic has I was told!!! Still having a problem with my white blood cells since the second surgery but that too I am sure will get better in time! 

No matter how much I try to think that all my cancer is gone it is and I think will always be in the back of my mind at least for now, maybe it will change in the months to come I don’t know and.....I can live with that I will take it one follow up appointment at a time and be thankful for the blessing I was given all the while thinking and sending good energies to everybody on this site who are waging or helping someone else with their own battle with this awful disease!! 

Charles
93 Posts

 This surgery has put me back a bit behind all the progress I had already made, I tried to go for a walk yesterday morning and could not even do one km and I was dead tired.  But no worries after receiving the ok from one of my doctors today I will start with my daily walks and exercises routine again next week because it would be a shame for me to start wallowing in self-pity after being given such great news of my NED diagnostic and no treatments needed.....not cancer free diagnostic has I was told!
 

Nicky -- FWIW --

This is one time when you should ignore the goals your mind sets, and let your body be your guide:

. . . . If you can only walk half a kilometer -- DO IT, and consider it a victory.

"Defeat" is to be able to walk half a kilometer, and to do nothing -- because half a km isn't worth doing.

I've been there, and I understand the temptation.  But it's a mistake, IMHO.

.     Charles
Nicky01
162 Posts

Charles‍ Good morning, I absolutely agree with what you’re saying. The fact that I wanted to wait one more week to start walking again was not because I thought half a km was not worth it, it was what my doctor recommended because when I took that walk I was having difficulty breathing and it was making me cough and coughing or sneezing is what caused my lung hernia and why I had to have a second surgery. The surgeon could not put a mesh over the hernia because of it’s location between the ribs my doctor told me to be cautious because I could have a repeat of a second hernia, so I took his recommendation to wait one more week or until there is no coughing before going for walks.....I still walk but just inside the house short walks every hour and going up and down my stairway. I am doing a lot better everyday and also doing more everyday also completely off the meds for the past two days. Life is good and will only keep getting better one day at a time and one short walk at a time for a few more days! 

 This surgery has put me back a bit behind all the progress I had already made, I tried to go for a walk yesterday morning and could not even do one km and I was dead tired.  But no worries after receiving the ok from one of my doctors today I will start with my daily walks and exercises routine again next week because it would be a shame for me to start wallowing in self-pity after being given such great news of my NED diagnostic and no treatments needed.....not cancer free diagnostic has I was told!
 

Nicky -- FWIW --

This is one time when you should ignore the goals your mind sets, and let your body be your guide:

. . . . If you can only walk half a kilometer -- DO IT, and consider it a victory.

"Defeat" is to be able to walk half a kilometer, and to do nothing -- because half a km isn't worth doing.

I've been there, and I understand the temptation.  But it's a mistake, IMHO.

.     Charles

 

 
Pinto
40 Posts
Nicky01‍ I’m also lucky enough to have NED status. I went from being stage 4 (colon cancer with liver mets) to being NED within the same year of diagnosis. I had surgery and chemo but I feel like a fraud sometimes because it happened so fast. I always say, “I’m currently” NED because I don’t want to jinx it. I try to avoid talking about my stage because, again, I feel like a fraud knowing I didn’t have the same depth of struggles of those who are late stage or have active metastasis. I can relate when you talk about the doctor questioning you about smoking. Colon cancer also has a stigma attached to it. I usually preceded my diagnosis with “I’m a young, healthy, fit, non-smoker, non-drinker...” because I don’t want people to blame or shame me for getting cancer. There are still people who insist we did something wrong to get this disease. How horrible is that?! I think once we receive this diagnosis, whether the disease is active or not, we are always living with it. I really dislike the term “survivor” because that implies it’s in the past when we all know, it will be there forever whether we die from it or not. On the bright side, we are not alone in this and the louder we are, the less others will struggle in the future. Good for you for standing up to that young doc!
Nicky01
162 Posts
Pinto‍ Hi, happy to hear about your NED status and you are right even with that diagnostic I still feel like it will be with me for the rest of my life but I don’t intend to dwell on it. For myself I know my emotions were all over the place and even though I am getting better at managing them they still do sometime take over and bring me back, it must be why some people say it’s like being on a roller coaster ride...ups and downs....dead stop and then you start all over again. I have started meditation and it does seem to help! I will no longer answer questions about my smoking addiction because I stop smoking 20 years ago. Yes I also have the same feelings you have about my NED status when I see that so many people are struggling and fighting to beat their cancer and I do think this is also one of the reason why it is very hard to forget that we had cancer!! All the best with your next scan, all we can do is take it one day at a time and live life to the fullest!!
ACH2015
1866 Posts
Nicky01

I just read your post, and I can identify with your concerns and frustrations in so many ways.

I was diagnosed with Stage IV Adenocarcinoma of Unknown Primary Origin (is 1 - 3 % of all known cancers) in June of 2016. Not lung cancer - the cancer was found in my left inguinal (groin) region. I too smoked for 30 years, and had quit well over a decade before diagnosis. I am a real anomaly and although exhaustive testing has been done - the unknown primary origin of the cancer is rarely found.

To give you perspective in my treatment path since diagnosis in 2016: 4 surgeries, chemo, radiation, immunotherapy and all that with a recurrence of the same cancer in 2017 that involved the (failed) immunotherapy and the required 4th surgery.

So there are many facets I'd like to share with you here.

Given my unknown primary diagnosis - and it being Stage IV - I too will never believe I am cancer free - or free from getting another cancer. You sound like me in that your have a desire to understand your situation and aren't afraid to look for the truth and seek to make sense of where you are. Anyway, the unknown primary can rear its ugly head at any time - as the only means to monitor for recurrence is constant (regular) CT scan surveillance (now every 4 months instead of 3 months) my own monitoring and ongoing gastro scopes for an unrelated precancerous condition called Barrett's Esophagus that was detected in the initial work up of 2016.

After the major surgery to remove the main tumor and all of the lymph nodes in the left inguinal region, I had a short sense of being "cancer free" when the margins were deemed clear in all areas of the surgery. That was destroyed after the recurrence of 2017 and all the new efforts to kill the recurrence that failed along the way - until the 4th surgery that took forever to finally heal after the immunotherapy failed (2018) - and caused multiple problematic side effects - to this day.

What I have come to realize in a very real way is that the past can catch up to us - regardless of when we stopped a potentially deadly practice such as smoking, or drinking, or overeating, unprotected sexual contacts or other related potential causes for an initial or secondary cancer. So it's incentive to be good in so many ways that elude us when we are younger, or no aware of the cancer related possibilities and or we just have that bullet proof thinking of "it can't and won't happen to me" - that changes - when it does happen. Lastly, two big concerns. Our environment (your work place for example) has many unknown potential hazards within that we can be exposed to even with diligence and knowledge. Many chemicals of other hazards are unknown until we've been surrounded by them for sufficient time and exposure to create the perfect storm for cancer to develop. A chemical I was exposed to in the 1980's was a potential catalyst for my current cancer - but we will truly never know. I do take some comfort in at least putting that to rest finally. Our genetics is something we can't change either. Many cancers can be inherited from our parents - and we can't change that - only be aware of and monitor through testing and surveillance.

I know that I have and still do over eat, I used to drink alcohol and smoke cigarettes and have in the past had unprotected sex. I've come to accept that, and I don't get offended when asked questions of my past habits toward narrowing down a cause and or source of cancer. I welcome it toward understanding it and hopefully resolving it. One other vital fact I have come to accept I will throw in here - doctors can only detect cancer that has formed sufficiently to be physically seen, or observed in (if applicable) blood, tissue, P.E.T., CT or other methods. And that means understanding our individual and unique risk factors toward testing and surveillance. There is much unknown with each of us. Some choose to explore - other don't. That too is up to the individual.

I didn't mean to be so long winded here, but I identified with so much of what you said in your post - I felt compelled to answer and share.

Today I struggle to move forward in many ways. I will be shopping for clothes or something else and have this second thought of "why bother, I don't know how long I will live - why waste the money my wife will need if I get another recurrence", and then I snap back into reality, and more often than not will buy it. And I buy it as a reason to move forward - and give myself the incentive to keep going - because I did buy the item and need to live long enough to justify the expense. This used to upset me a lot, but I can't change my sense of reality and wrestle with finding that balance we all need.

I really hope you find your balance in life, and keep moving forward. I found that depersonalizing any questions from the medical field just stops any sense of anger or frustration that I don't need in my life. It takes practice and I still need to practice it myself.

Cancer opens many doors in our lives. Doors from our past - the present and the future.

Thanks for listening, and posting - and letting me share.

Keep safe.

ACH2015
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