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How do you not feel like everything is cancer after having a cancer diagnosis....?

How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by alexisrj on Jun 27, 2020 11:59 am

I was diagnosed with colon cancer in April 2020 (at 35 years old, no family history, no risk factors). The surgeon removed my sigmoid colon with the tumour, got good margins, it was found to be Stage 1, no further treatment. My surgery was about 7 weeks ago now and since 2 ago, I've had a few random things going on that I have been instantly freaking out that they are cancer. Spotting between periods for a couple months --> endometrial cancer (I had an ultrasound, normal result); a random sore on my skin --> skin cancer (doctor said it is not skin cancer); someone brought a cake over, it was very dry and felt like it was sticking in my throat --> esophageal cancer (can't get a scope for a while, so since that started, even water feels like it's sticking going down if I'm thinking about it but I can eat steak no problem, but also it feels like someone is squeezing my throat half the time.... just can't stop being hyper-aware of every sensation 😖); I had a bit of a rattle for a second, coughed and it was gone --> of course, that the esophageal cancer that I feel like I have that has spread to my lungs.... I FEEL LIKE I'M GOING CRAZY.

Pretty sure I'd get some major award if I had all these independent primary cancers at the same time.... but part of me is thinking that I shouldn't have had colon cancer at my age and with no risk factors or family history, so why not all (or 1 or 2) of these other ones?? And I think since it's so unlikely that I have these other cancers, I'm not a priority for a scope (understandably) but now I feel like something will be missed.

To top it off, I spoke with my therapist about this and his response was that, healthcare in Canada is free, so why not get all the tests and all the things done so I don't have to worry about it? He said this is something everyone goes through for the first 3 months after any kind of traumatic event and I should feel better after a few months and not panicking about everything... but I still need to get through each day. 😭 And I feel like this wasn't helpful and is making me feel like my most-likely irrational fears are rational...... 

Re: How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by Wendy Tea on Jun 27, 2020 2:41 pm

alexisrj‍  Yes, you are so right!  Gosh, every twinge, lump, bump, and pain freaks me out. But what I know to be true today, is my oncologist said Good Bye. You dont need to see me again. But if you do I am here for you. I know it is early days for you and you are a young mom with a beautiful family. Yes, you need to get everything checked out. Maybe a full physical once or twice a year will help? For me, the important thing is to listen to my body. I know when something is not right, and when it needs a doctor's check up. Trust your instincts. It's ok to worry but worrying can be counterproductive unless you take action.  Wishing you a wonderful summer with your family. 
Healing takes time and opportunity. Wendy Tea

Re: How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by Runner Girl on Jun 27, 2020 3:01 pm

alexisrj‍ ,

Great support and words from Wendy Tea‍ .  I just wanted to add that recently there has been an uptick of people in your age group being diagnosed with colon cancer.  

Here is some information, it's from the American Cancer Society:
  • In 2020, there will be about 18,000 cases of colorectal cancer diagnosed in people under 50, the equivalent of 49 new cases per day.
  • One in five colorectal cancer patients are between 20 and 54 years old.
  • It is the 3rd leading cause of cancer death in young adults.
  • The risk of colorectal cancer increases with age; 90% of cases are diagnosed in individuals 50 years of age and older.
  • While rates of colorectal cancer have been declining among adults 50 years and older, incidence of colorectal cancer is increasing among adults under age 50.
  • People born after 1990 have 2 times the risk of developing colon cancer and 4 times the risk of developing rectal cancer than those born in 1950.
Your cancer was caught early, was removed entirely and now you need to find a way to enjoy the life you have after cancer.  It's hard, I know, I'm 2 years out from a breast cancer diagnosis.  Yes, I drive myself nuts sometimes with this pain or that pain - I think we all do to some degree.  The key is not to let it take over your life.  Acknowledge the pain and have it investigated if you believe it is something serious, once proven to be not cancer let it go.  You're really new to this, it will take time for your nerves to settle down.  But you will get there.  

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

Re: How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by Carjac87 on Jun 28, 2020 8:41 am

I too would love an answer to this question.....in fact, you sound just like me!

I had my surgery (endometrial cancer/hysterectomy) in 2017 & now when my stomach bloats, it's cancer; I get skin tags/new moles/*weird bumps, it's cancer; coughing on & off, cancer. You are definitely not alone & I know I'm not the only other one!

I SO get what you mean! Obviously (& sadly) I can't give you a satisfactory answer but I do wish for you peace within yourself....hugs!
~Don't sweat the small stuff~ Jacquie

Re: How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by alexisrj on Jun 28, 2020 9:27 am

Wendy Tea‍ I thought I knew my body and when I had the colon tumour, I knew something was wrong. But I know I'm not right about a lot of things I'm "feeling" are wrong/cancer, so I'm having trouble trusting myself.... 😞 I'm hoping that after more time has passed, I can get to where I can separate those feelings. It's just so hard right now! It might just be that I need to get these things checked out, deal with anything (if anything) that comes up and otherwise, hopefully accept that not everything is cancer at some point.... 

Runner Girl‍ thanks for the info! I keep trying to remind myself that I'm lucky my cancer was caught early and I'm really trying to stay positive and focus on the fact that I am recovering and have time to focus on my kids and family. I wonder why there has been such an increase in younger people getting colon cancer?? I can't help but think that it is something we're doing......

Carjac87‍ I appreciate your response - even just knowing I'm not alone (and hopefully not actually crazy!) is helpful! I'm sure this is probably very normal after going through something like this, but very frustrating! Hugs to you too! ❤

Re: How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by ashcon on Jun 28, 2020 1:50 pm

Hi alexisrj
I think (actually I KNOW) we all get consumed with these fears. 
Like you, no indication or reason to believe I had cancer (breast cancer in my case). No symptoms. Clear mammogram just 6 months earlier. 
Then - bam - stage 3. Discovered only because I felt a small lump one day while in the shower. 
So, like you, I found it difficult to trust my body initially.  Now, 3 years since diagnosis, I am a little more chill about every little thing.  Being aware that my body is simply aging is a humbling, yet oddly reassuring perspective as well. 

The panic does tend to ease as time goes on. You'll notice it at one year, and then quite significantly at 2 years out from diagnosis. 
A good tip that my oncologist gave me when I was harassing her to test for every little thing: give any new sign or symptom 2 weeks to play out. Monitor it. If it doesn't go away, or gets worse after 2 weeks, call the doc.  

Hope this perspective helps.
---- "Nothing ever becomes real till it is experienced." ----

Re: How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by Whitelilies on Jun 28, 2020 2:11 pm

alexisrj‍ Hello
FOR SURE so many of us FEEL that every little twitch, itch, bump, lump, clump, bubble, TOOT, wind passing, scab, mole, wipe, is a Cancer Diagnosis !
Been There/Done That.
You are NOT irrational......you are thinking....you are wondering....you are worrying.....
I like that "2 week" idea....if something STILL bothers you after 2 weeks; see medical opinion. Done. Do It.
If not.....breathe out....and yes, IN TIME, the mind, body an soul will heal too, from all that has occurred.
I think (I am not a doctor) that the most COMMON place colon cancer/recurrence will be, is to the LIVER.  That is the "new Hot Spot:  Go To place".
So know.....we ALL think about this......to me; this is "normal" !!

Warmly,
Lillian

Whitelilies

PS  I found a "lump" under my chin.....new word I learned: Mandibular.......told dr......had an ultrasound.....I leaped at Dr after appt and asked:  Did "it" travel from my caboose to my chin?

Dr said : NO, It cannot travel THAT fast !!  He chuckled........

Re: How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by pomlady on Jun 28, 2020 2:18 pm

So sorry you are going through this.  It sucks for sure!

I am feeling the same way but not all over my body, in the area that I was diagnosis-ed with basal cell, the very end of my nose.
I had a biopsy to confirm 4+ weeks ago.  My Mohs is scheduled for early August and I am freaking out waiting.

Since the biopsy my girlfriend asked me if I could feel the lump that I had under my skin on my nose inside my nose, couldn't see the lump outside by the
way just in a magnifying mirror I could see what looked like a pore that was slightly raised close by.  Never felt inside my nose~!  So I put my finger up there and felt around and no not in that area but I could feel a lump between my two fingers in my right nostril.  I freaked and went to my gp and she said that she was sure it wasn't
from the basal although it is in the general area and has some odd looking acne type spots over it and it is not too far away from the biopsy.  She said that she thought mine would only have 3 scraps, I was over worried and to put it in perspective, she had an older man that had a large bcc and waited a year to get into Mohs and by then it
was too big and he had to wait another year for radiation and his nose is beautiful today.  I guess to put me at ease but it did the opposite!

As mentioned I also have had some tiny spots that aren't going away in the same area as the lump above and when I push out that area with my finger inside
I can see a red line joining them up!  I was reading online at some site for bcc a man said he had a tiny spot of bcc and it was way larger inside
after Mohs!    I also have about 2 or 3 of these same little spots on the left nostril a ways away that just came last week and again when I press out inside there
is a red line joining them up too!
I called my gp Fri. as it is playing on my mind "what she thought the lump inside the nose was?" and she is getting back to me Mon. or Tues.
But then does she really know, probably not without more testing but she didn't seem worried when I saw her.  I never asked at the time what
she thought it was, duh me!  
Of course now I am feeling like my nose is moist too much and I keep trying to clean it out with a kleenex.  I also feel like I am really partial to smells
and can smell things way more then before, is that weird or what!
I saw online a guy said  he had a dot size bcc that turned out to be a lot larger in size inside! 
Now I am worrying sick if the area is larger and too large for the Mohs doctor to want to tackle once I get there!   Will I be turned away on his table?????
Or if he will just do the biopsied area and leave the other areas with more then likely bcc's growing and I will have to wait longer for another appointment!
At the Vancouver Health clinic when I called it was 12-14 month wait for Mohs surgery and I live about 4 hours away from Vancouver in the middle of the
province.  Luckily this other Mohs clinic  in Vancouver we found was only weeks wait but I did see on their site a lady said she previously waited for 9 months to get in!.
We only have 1 dermatologist in Kelowna in the middle of the province that has a 12-14 months wait to get in to see (was closed during Covid and not sure if she is open yet!) and 1 dermatologist in Kamloops about an hour away from me that is off the medical system.  I only ended up going to him for a second opinion and a shave biopsy as my gp didn't know how to do one and she was unsure if I had bcc or not.  I didn't want a scar if I didn't have to have one; so I paid for the shave biopsy.
I know we have relatively half decent health care in Canada but I wish that we could get in sooner and get things taken care of asap without worrying like this.

Sorry for going on and on and on, I tend to do that!
If anyone wants to move this post to another area of the board, feel free.

So yes you are definitely not alone thinking anything can be cancer any feeling you have in your body.  And feeling symptoms.

Hoping you can relax your mind soon and get over these feelings of fear.
Sending hugs your way.

Re: How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by jorola on Jun 28, 2020 8:00 pm

As a caregiver, I can say I watched my husband like a hawk for the first few months after he was declared NED - no evidence of cancer. Poor man could not even fart without me freaking. Seriously, it was almost that bad. As ashcon‍  and Whitelilies‍ said, it took time for me to chill. It was very hard at times. Especially when he got pneumonia twice. I like the idea of deep breathing, using logic (as much as your panicked mind will allow you) to think things through and monitoring. In the end if you are uncertain and need/want to have your doctor check it out, then go. Better safe than sorry. One thing to maybe do, I am just thinking this off the top of my head here, maybe mark concerning symptoms down/journal them. Sometimes we think we have had something for a long time but if we mark it down and then go check it may have only been a few days or weeks and not months. This helps your doctor to have a better understanding of what is going on too. Warning - just don't get carried away and let this journaling take over your life or focus either! That would defeat the purpose. Yes there is life after cancer and you will get there.
Live, Laugh, Love

Re: How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by Simi on Jun 29, 2020 5:30 am

alexisrj‍ i was 42 last year when diagnosed with breast cancer same no family history , no risk factors but I understand how you feel as for the past year every pain , every cough makes me think the cancer has spread , I think many of us feel the same way and fear and  anxiety is so ever present , but this is becoming a new normal and you learn to adapt but it is important to stay vigilant and nothing wrong with investigating further your symptoms and put your mind at ease ! Take care 
simi 

Re: How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by Lianne_adminCCS on Jun 29, 2020 1:54 pm

alexisrj‍ 

Great post. As you can see, you are most definitely not alone. Last month I celebrated being 9 years since completion of treatment for breast cancer. In the early days I would feel a twinge, or a bump or a bruise or a you name it and dive straight into another cancer, or a spread of my cancer. It was exhausting and really wreaked havoc on my mental health. I would like to say it never happens now but it definitely does. But far less frequently and I am a whole lot calmer. In fact a couple days ago I felt a bump on the inside of my mouth. Superman leap to oral cancer I go !! I decided to keep an eye on it for a week or two then will go get it checked out by the dentist. But today I didn't think of it till I read your post.
The other thing to remember is with a history now of your own, going forward your GP or the like, may do tests to rule things out, as due diligence and respect of your cancer history. For example, I have had rib pain now for 4 years that cannot be explained. But because breast cancer can metastasize to bones ( ribs ) they need to rule that out. I have had probably 5 bone scans in the 9 years since treatment ended.  And while it is good they are checking, the lead up to the test, the wait for test results weighs on me. I am telling you this because I wish someone told me that this could happen. Now I know they are being cautious and NOT suspecting something nefarious every time.. 

I remember thinking like you, "is this how it will be now forever?" Part of that comes with not being in constant check with your medical team. When they sent me out the door for the last time, the panic set in.  As much as I hated going all the time, there was a sense of calm that came with being looked at regularly. When you are done, it feels like the safety net of that is gone.

Continue to reach out here. We are listening

Lianne

 

Re: How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by alexisrj on Jul 7, 2020 10:43 am

ashcon‍ I'm glad to hear it does get a bit easier over time.... I like the 2 weeks idea - if I can make it to 2 weeks without panicking these days... maybe I'll start with 2 days and work my way up 😶

Whitelilies‍ - glad to hear it doesn't travel THAT fast! 🙃

pomlady‍ how frustrating! I find all the worrying is just so exhausting! I remember going into my surgery - and my husband thought the same but never told me - and thinking that they would open me up, realize how bad the cancer actually was and just close me right back up without doing anything at all.... and I would wake up to the news that it was so much worse than they thought.... It turned out that wasn't the case, my cancer was removed and it "went as well as it could've". There was one suspicious spot on my uterus but they biopsied it and got the results back (just scar tissue from previous surgery) before I even woke up. I can only imagine I would have gone insane in the hospital room alone for 5 days if they had had to wait for pathology. I'm sending you positive thoughts and I hope you get more answers soon ❤️

jorola‍ Thanks for the suggestion - I did make note of all my concerns and I almost found that after writing them down, I didn't need to think about them as much... and I've actually been feeling better! I almost wonder if I would be even more worried if it was someone else in my family going through it - as the person experiencing it, I "know" what I'm feeling and usually have a decent sense of what I should be concerned about (not as accurate these days... on hyper-alert..... but still...) I can't imagine 

Simi‍ Glad to hear I'm not alone! Still getting used to this "new normal".... and trying to be patient that it will take time... take care as well!

Lianne_adminCCS‍ - I was with you on the leap to oral cancer just the other day - also had a funny "bump"/kanker type sore on my gums! I did make myself wait a couple of days and it did go away but I guess there is no way to stop that leap! (and especially as I could easily have thought that before I actually had cancer since I tend to be rather anxious for as long as I can remember). I haven't had any follow-up tests yet but I've been warned about the lead up and getting through at least the first few before I may not completely panic..... I can imagine the stress already....!

Re: How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by Whitelilies on Jul 7, 2020 11:06 am

alexisrj‍ Hello
I kinda feel it is "normal" to worry about the following:
Every wipe, every swipe, every colour, every drop, every toot, every fart, every musical note, every clump, every lump, every dump!

List is Long !

Time to laugh!

Lillian

Re: How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by alexisrj on Jul 7, 2020 12:25 pm

Whitelilies‍  haha 😂 that sounds like it could be a song or something! 

Re: How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by Lacey_adminCCS on Jul 7, 2020 1:54 pm

alexisrj‍ 

Sometimes all it takes is a quick post to show you that you're not alone! I'm so glad you posted. Around here your normal 😊 LOL

For anyone wanting to look up Canadian Cancer Stats here is a link to our publication: https://www.cancer.ca/en/cancer-information/cancer-101/canadian-cancer-statistics/past-editions-canadian-cancer-statistics/?region=on

Always nice to hear from you! 2 days at a time is a good starting place!

Lacey

 

Re: How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by MCoaster on Jul 7, 2020 2:01 pm

alexisrj‍ 

I read your posts and think about how you are coping and now I have to ask when the video is to be released?
The latest CCS fundraiser  video  Whitelilies‍ And alexisrj‍ Take on Cancer.  Way to go both of you!

Thanks for giving my imitation a much needed laugh and look after yourselves.

Hugs

Margaret
 

Re: How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by Laika57 on Jul 7, 2020 3:19 pm

I think it's normal . You don't worry about the things you don't know about, but once you know they are real and not just on TV it's a whole new ballgame....

seeing my husband going through this, has brought it home with a vengeance. Now I really want to slap people who still smoke, or walk around with cherry red sunburns. You can't avoid all cancers, but stuff like that feels like they're asking for trouble.

on the other hand, give me a physical injury or disease over a mental one any day... anything that can be actively treated has got to be better than "he should improve with time..."
Have you hugged your dog today?

Re: How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by Brighty on Jul 7, 2020 4:49 pm

I totally get you Laika57‍  when I see people smoking or drinking I want to say something so badly.      But I"m not the smoking or drinking police.    Watching my finance go through what he went through, I never want another human being to go through such hell.     When I go out with friends and they bake in the sun without sunscreen, I do say something. I offer them sunscreen, but they think it's a joke.   They want a tan.      I have been thinking for a while of going talking to high school kids about the dangers of smoking and drinking and even showing them pictures of what can happen if they continue but I never really worked up the nerve to do it.       Not even sure it's such a great idea anymore.     But yes, each time I see someone lighting up, or drinking, I get that ache in my gutt and in my head I say "please don't do it."  But I can't tell people what to do.    
Help is out there. All you have to do is reach out.

Re: How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by Cynthia Mac on Jul 8, 2020 8:03 am

Laika57‍ , One of the hardest moments in my “caregiving career” was the day I learned my Dad had started smoking after his LUNG CANCER surgery. He just looked at me and shrugged, and I just died a little inside. I couldn’t talk about it for days. And the Laddie smokes. I just can’t get away from tobacco smoke. It’s awful.

I can also relate to what you say about the mental health issue. Those first two weeks when the doctors started about potential recovery, and then watching the slide in the third week (from outside the hospital) — well, also heartbreaking.

I read your other post as well, and my heart goes out to you over your increased caregiving.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by klay on Jul 10, 2020 7:29 pm

This is how I feel.I have been battling three different types of cancer over the past two years.  I sometimes feel like I can't see the light at the end of the tunnel but I know it's there.
I had surgery for the last cancer (small bowel) five weeks ago and post surgery I've been throwing up..mostly bile and everyday all day....I was back to see the oncologist two weeks ago and had another CT  scan and another endoscopy and there was no issue with the surgery itself but there has been no conclusive reason for the vomiting. I've lost 25 pounds since the surgery.
I'm trying so hard to stay positive but sometimes it gets very overwhelming...I cry alot..
I just want to know how everyone stays so positive
Much love to you all..please take care of yourselves and those you love

Re: How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by SpeedyStill on Jul 10, 2020 8:20 pm

klay‍ 
You have every right to feel the way you do. You have and still are going through too much for one person. I can't imagine how hard this is for you.
Yes there are a lot of uplifting messages posted, the messages come from a caring Community. Some of the posts may not relate to you right now but keep connected. There will be people who want to reach out to you.
My situation does not compare to yours however I live with chronic pain that gets extremely bad in the evenings and I can't wait until it is time to take my sleeping pills to get to the next day.
When I post in the evenings I try to get outside of my situation and be as helful as I can for other people.
I have survived cancer and that is my wish for you.
Speedystill 

Re: How do you not feel like everything is cancer after having a cancer diagnosis....?

Posted by klay on Jul 10, 2020 9:18 pm

Thank you so much..I will keep checking in
I joined at the encouragement of my family doctor
It's so nice not to feel like the only person going through this
Thank you for the encouragement