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Let's Discuss..fear of cancer recurrence

Let's Discuss..fear of cancer recurrence

Posted by Lacey_Moderator on Aug 24, 2020 12:21 pm

 64f5e99fcb74d8091d8271b50018a0e1-huge-le

Watch our Webinar Fear of cancer recurrence during COVID-19 here

A patient’s cancer journey doesn’t end after treatment. Almost half of all cancer patients have a strong fear their cancer will return. Caregivers also experience similar fears.
  • Have you experienced fear of recurrence?
  • At what point was the fear most difficult to manage?
  • What do you find helps manage your fear?


Please take a moment to share your experiences below.
 

Re: Let's Discuss..fear of cancer recurrence

Posted by Mammabear on Aug 26, 2020 11:05 am

This fear is real and serious. We all have it. And some times unfortunately the fear is realized (as in my case). The question is how do you not let it rule your life. How do you live your best life and put the fear in the back. I stay busy, mediate and do yoga, walk the dog and cry privately when it overwhelms me. And it does overwhelm me some days. My friends who live with cancer get it. You get it. My oncologist stays positive and my scan last week was 'good' and 'stable'. But we were expecting to see shrinkage. I still have tumours in my liver, suspect nodules in my lungs, suspect spots on my bones (suspect = too small to test). Liver and lung nodules were shrinking since I stopped the harsh chemo at the end of December and stayed on Herceptin and Pertuzumab but that shrinking stopped in this last scan and everything is 'stable'. Yes good news there was nothing 'new' or 'increased' but not going in the direction we all wanted. I need to be NED to be in remission. Onc is putting me on Letrozole now to get some 'extra mileage' with adding hormone therapy. I had a terrible time with cancer 1.0 on Tamoxafin. 10-20 full on sweat hot flashes a day and zero fuse so definitely more irritable than normal. Next scan in 4 months. I will spend that time spend trying to stay positive and not planning my funeral. I think I will give up refined sugar again (can't hurt right?). This site is very good for support and ideas and positive messages so thanks for that. I wasn't on this site with cancer 1.0 but find it very supportive with 2.0. So back to my deep breathing, back to work, back to walking the dog and back to living my life. What else is there to do? I can't and won't curl up and accept that the big C will win. That is not in my nature.  

Re: Let's Discuss..fear of cancer recurrence

Posted by Montana on Aug 26, 2020 11:09 am

I'm trying not to think about it, but it is on my mind every day.  A friend  told me to "stop wasting valuable PRESENT moments, with what may, or may not happen in the future.  If it reoccurs, then you will deal with it."  Wise words, but hard to execute.  I think when I start to worry, I need to say out loud, "STOP", and then think of something else.  My last chemo was early January 2020 and last radiation was the end of February 2020.  I saw the radiologist, for the last time, the beginning of June.  I saw my oncologist mid July.  In September, I will have my yearly mammogram and I don't see my oncologist until January 2021.  No more scans.  Next blood work will probably be in January, but I don't have any blood work forms..  I was told that I am now in the care of my family doctor.  She is wonderful, but not a cancer specialist.  It is difficult to go from treatment to "Don't let the door hit you on your way out!!"

I wish there was more for us to give us some sort of reassurance, but there isn't.  I asked my oncologist if I was a cancer survivor.  She said not until I am cancer free for 5 years.  Ok, so what am I?  What do I say to people?  Do I say that I had cancer, or I fought cancer or I am in remission?  Sometimes I feel more alone and confused than when I was undergoing treatment.

Re: Let's Discuss..fear of cancer recurrence

Posted by Kathy49 on Aug 26, 2020 11:56 am

Out of the blue, I suddenly had breast cancer ending in a total mastectomy in December 2018.  I was not too worried about it because the tumour was very small (as they said) and I had my entire breast taken off.  For the last 9 months of 2019 I was having menstrual-like cramps, vaginal discharge that was clear, and terrible pains in my right side.  Then on February 13 2020 in the middle of the night I was woken up by a large discharge of liquid which wet the bed with a diameter of about 2 feet.  I cleaned myself up and went back to bed.  In the morning I called my family doctor who told me to go to the Emergency Dept.  I did that and unfortunately the triage person completely understated what I told her and left out much of the information I gave her.  I told her about the breast cancer, the year of symptoms, the huge wet discharge the day before etc. but all she wrote was "vaginal discharge".  Well, to a doctor that is a very minor thing, so it resulted in a wait in Emergency of 10 hours, actually I was the last person to be put in an exam room, and they left me on the edge of a high table with no railings.  I sat like that for ½ hour and then called out Hello, Help?  Someone came and I said I am elderly and I can't sit on the edge of this high table with no railings for this long duration of time.  They said Oh the doctor is just coming.  I waited another ½ hour, meaning I sat on the edge of that table for 1 hour in only a medical gown.  Even though I wasted 10 hours, I put on my clothes and I walked out.  They were very surprised and said Oh where are you going?  and I said I'm sorry but you can't treat people like this and I left.  

Regarding the topic of this thread, did I fear cancer recurrence - no not really but I did have a very strong feeling during the strange symptoms most of 2019 that something was not right.  After I had the huge discharge, I was very sure I have a cancer recurrence.  I live alone and have no one to talk to or give me any support at all.  I have to deal with all the frightening things alone.  Anyway, I told my family doctor what happened in Emergency and a few weeks later he scheduled, and I got, an ultrasound of my abdomen.  That showed cancer in the uterus.  Then several weeks later on April 4 I had a biopsy done which confirmed that I have cancer in my uterus, endometrium, cervix and perhaps the ovaries.  So if I had been examined properly on February 14, the cancer would have been found 1 ½ months earlier than April 4.  I had written a letter to the hospital on February 15 and when I got the confirmation of the cancer on April 4 I wrote again and pointed out to the hospital patient relations person that my cancer would have been found 1 ½ months earlier if I hadn't been so badly treated in Emergency.  Not only that but April was fully in the COVID time, whereas if treatment had been started on or around February 14, that was before COVID.

I saw an oncologist in Ottawa not long after April 4 and he scheduled surgery for July 8 2020.  I was put on Megestrol which supposedly slows down the growth of the cancer.  What I was not told was that it also causes blood clots.  On June 25 I woke up and I had an excrutiating pain in my left chest heart area and I could barely talk.  I was taken by ambulance to emergency and I was found to have serious Pulmonary Embolisms.  So I was put on blood thinners and my surgery for July 8 was postponed.  I think it will be the end of September 2020 because apparently a patient has to stay on blood thinners for three months before any other surgery can be scheduled.

So I was not afraid of cancer recurrence until February 13 when my bed got all wet and the previous year's symptoms then made sense.  Now I've been waiting from June 25 when the July 8 surgery date was postponed, I'm waiting alone with escalating symptoms of cancer every day like uterine cramps and a lot of discharge that I have to use a towel to clean up every day or twice a day.  I was back in Emergency on August 20 with more chest pain and they found a few small blood clots but not enough to delay the surgery that is supposed to happen in end September 2020.

I'm just getting more and more anxious that during all this waiting - which goes back into 2019 when I had symptoms but no one thought to check for cancer - the cancer is spreading and by the time I get to the surgery date in end of September 2020 (hopefully) I am worried the cancer will have spread.  It is all very upsetting and I try to remain strong and handle each day the best I can.  My brother who is a doctor millionaire has no interest in helping me at all.

Re: Let's Discuss..fear of cancer recurrence

Posted by OreTimber on Aug 26, 2020 11:58 am

This is a difficult subject.  I have been cancer free for two years now.   I know there are several years to go before I can figuratively exhale.  But, coming so close in the original battle I've found a certain freedom.  I no longer worry about money, about whether or not to do something.  I just do it.  The journey of life is a finite thing.  Some find peace in god as do I.  Currently, in these turbulent times I am working on my ability to become more compassionate, considerate, loving and merciful.  This is a difficult task for a person who enforced the law for 30 years.  Especially as my brothers and sisters are targets for violence, even murder.  But embracing the positive and rejecting the negative in life seems to steer me away from the dark feelings that can envelope us.  I thank god every day I wake up.  I live my life to the fullest I can.  I love my wife and children and friends and family to the best of my ability.  Then, I realize I don't think about cancer as often.  I go weeks without worrying about it.  I pray for those who are affected by the disease.  Both the ill and their families.  Faith in something bigger than ourselves has helped immensely.  God bless, Friends Raye and John to my right.   78d4a22b715d89ccacaa3939e337a102-huge-im

Re: Let's Discuss..fear of cancer recurrence

Posted by Essjay on Aug 26, 2020 12:00 pm

A hard one. Hard to admit to, hard to talk about...

I’m 25months post diagnosis, completed treatment 15 months ago. I’m at the point of being handed off to my family doctor for monitoring if only I had one...My oncologist reluctantly agreed to see me in October, after my last appointment was by phone and my last physical exam was January (thanks to COVID).

I know what the statistics say for my chances of recurrence, but of course those are not my ‘actual’ risk. No one can tell me that. All of us here on this forum have been on the wrong side of some of the percentages eg. 70% mammograms are clear, 90% lumps biopsied are benign, 90% breast cancers are hormonal, 80%  TNBC patients have no recurrence etc. So even though my chances are good, which dice have I got? No one can be sure. 

And so, every new thing is a worry. I’m learning not to panic, to wait a few weeks before getting worried, and my oncologist gave me a list of things that would mean an urgent doctor visit as opposed to waiting for my next check up to mention it.

My best way of coping is to get on with my life, and give myself breaks from thinking about cancer. Hiking in the mountains last week was intended to allow this but my neuropathy was agony for a couple of days so that reminder of my treatment was there, plus I have a shoulder problem - something is catching in the joint and causing pain and a slight loss of mobility. I was content to agree with my physio that it’s cartilage damage, but hubby’s mind went to cancer, and he shared his fears with me while we were on vacation. I’ve promised him I will mention it at my appointment in October, but he wants me to see a specialist too to get some images done. A big part of me is not wanting to know.

And so, I focus on living my best life, working hard, volunteering hard, eating well, exercising, spending time with friends and family, making memories - ‘wearing out, not rusting out’, just as my new t-shirt says f5135dcb53f6218d0e3ec19feb74d51b-huge-94

I am at peace with the chance that I may ‘wear out’ early, but hopeful that I will live a long and healthy life like my grandma who lived to be 103, 101 years independently in her own home!
Triple Negative Breast Cancer survivor since July 2018

Re: Let's Discuss..fear of cancer recurrence

Posted by Ten_minutes on Aug 26, 2020 12:08 pm

I think about this throughout the day on most days. Worry about the what ifs and how I will manage a recurrence. Trusting my oncologist when she says I have 2 lung nodules but it is damage from radiation, probably. It is the ‘probably’ that bothers me, it is the ‘positive margins’ remaining still after a double mastectomy, it is the worry of the lumps in my new ‘breasts’ that scare me. I watched my sister go from being ‘free from cancer’ to full on stage 4 within a matter of weeks. The fear is real. I try not to talk about my fears to my family because I think since it is almost 1 year since the start of this terrible cancer journey, they are tired of hearing about cancer. Everyone wants to put it behind them and get back to ‘normal’. I guess I do too but I just have such fear of recurrence. I am trying to increase my stamina for walking, I try to meditate on most days, and I have been trying to get back to doing things like knitting, crochet, reading, playing with my puppy. Sometimes these distractions do help my feel more positive about my future. 

Re: Let's Discuss..fear of cancer recurrence

Posted by sgt. pepper on Aug 26, 2020 12:24 pm

This is a very relevant topic for me since I have had three occurrences in the last ten years.  I was initially diagnosed with melanoma in 2010 and had surgery with no further treatment.  The cancer returned five years later with three large tumors in my groin which were treated with surgery and radiation.  Nine months later another tumor was found and that time I underwent systemic treatment with immunotherapy in a clinical trial.  Fortunately, this was effective and I have been cancer free for three years now.  However, even though I don't dwell on fears of recurrence, I am anxious whenever I undergo scans, now every six months.  I am always nervous regarding the results and have some trust issues since my cancer was misdiagnosed twice, the first time by five different doctors, the second time by my surgeon and oncologist.  This is a problem that just exacerbates any fears of recurrence and concern that it may not be diagnosed properly if it does return.  Given my history, I urge my specialists to be vigilant and cautious when diagnosing any suspicious symptoms.  I don't often think about a return of cancer and mortality but still react emotionally when I hear about the deaths of other cancer victims,  even people I don't even know personally.  I guess cancer leaves emotional scars no matter the outcome  Life is different for sure, even in subtle ways.

Sgt. Pepper

Re: Let's Discuss..fear of cancer recurrence

Posted by Laika57 on Aug 26, 2020 12:25 pm

Yeah, hubby has pancreatic cancer. Chance of recurrence is huge. And his drat oncologist can't even be bothered to check reports and scans until hubbys delirium passes (if it ever will). We're nearing 3 months post surgery and el dottore hasn't bothered to read the pathology report or order a follow up CT yet.
so i just asked the hospital to have another oncologist look at his file and give a 2nd opinion.
Less worried and more angry. Honestly, if he could at least treat me with some respect, pretend to appreciate the fact hubby may die while he is twiddling his thumbs. But nope.
Have you hugged your dog today?

Re: Let's Discuss..fear of cancer recurrence

Posted by Kims1961 on Aug 26, 2020 12:35 pm

I watched the webinar and found it very helpful.  What resonated with me was the idea of “taking a small bite, out of the larger worry” .  

For me, the challenge was how will i know if i have a recurrence?  I didn’t know i had breast cancer until i accidentally found the lump after clear mammograms!  What are normal ageing lumps, bumps, aches and what might be potential cancer recurrence?  I hardly ever went to a doctor previously, so being a cancer patient was very challenging.

So...maybe fear of cancer recurrence will never go away but I CAN take a small bite out of that worry.  I can try some of the strategies she suggested - mindfulness, self care, gratitude - I can connect with a medical professional if I’m still worried - and i can CONNECT with others, to help share how we are doing.

Thank you to all who have responded as well - I found your responses very helpful. Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Let's Discuss..fear of cancer recurrence

Posted by Brighty on Aug 26, 2020 1:01 pm

Dan had stage 4 esophageal  cancer .   After his surgery,  he was cancer  free and lived a short time after that.     After his 3 month CT scan, he was still cancer free but his chance of recurrence was very high.     The oncologist  told us likely  the cancer  cells were floating  around in his body and was only a matter  of time before  they  popped  up somewhere else.    So if he lived, we both would have been living  in fear constantly.     In the  end it was other factors  that killed him.   But if it wasn't the other factors,  the cancer  would have probably  reared it's ugly head again.   It was a no win situation.      
Help is out there. All you have to do is reach out.

Re: Let's Discuss..fear of cancer recurrence

Posted by Orlando on Aug 26, 2020 1:02 pm

Hello,
My wife has Glioblastoma and we are constantly worrying about the recurrence of her cancer.  The surgeon was able to remove over 90% of the tumor but this form of cancer has a very high rate of recurrence due to it's ability to form it's own blood supply.  This is a very scary journey but it's been 4 years and she's already beaten the odds by over 3 years.  We are blessed and fortunate.   

Re: Let's Discuss..fear of cancer recurrence

Posted by Cynthia Mac on Aug 26, 2020 1:21 pm

Caregiver perspective: I knew from January, 2018 that Dad’s cancer was an aggressive form. I knew, too, that there was a 50% chance of recurrence without chemo. So, I guess you could say I did my best to “stay real” about it.

Still, when I got that phone call saying, “It’s back, and it’s moved to my liver,” I stopped in my tracks, and could not fight back the tears.

To you patients/ survivors, your strength in managing such post-treatment fears is incredible to me. 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Let's Discuss..fear of cancer recurrence

Posted by Kathy49 on Aug 26, 2020 1:22 pm

WOW, I LOVE YOUR PHOTO!  I WISH YOU LOTS MORE TIME CANCER FREE.  FROM KATHY


Essjay
:
A hard one. Hard to admit to, hard to talk about...

I’m 25months post diagnosis, completed treatment 15 months ago. I’m at the point of being handed off to my family doctor for monitoring if only I had one...My oncologist reluctantly agreed to see me in October, after my last appointment was by phone and my last physical exam was January (thanks to COVID).

I know what the statistics say for my chances of recurrence, but of course those are not my ‘actual’ risk. No one can tell me that. All of us here on this forum have been on the wrong side of some of the percentages eg. 70% mammograms are clear, 90% lumps biopsied are benign, 90% breast cancers are hormonal, 80%  TNBC patients have no recurrence etc. So even though my chances are good, which dice have I got? No one can be sure. 

And so, every new thing is a worry. I’m learning not to panic, to wait a few weeks before getting worried, and my oncologist gave me a list of things that would mean an urgent doctor visit as opposed to waiting for my next check up to mention it.

My best way of coping is to get on with my life, and give myself breaks from thinking about cancer. Hiking in the mountains last week was intended to allow this but my neuropathy was agony for a couple of days so that reminder of my treatment was there, plus I have a shoulder problem - something is catching in the joint and causing pain and a slight loss of mobility. I was content to agree with my physio that it’s cartilage damage, but hubby’s mind went to cancer, and he shared his fears with me while we were on vacation. I’ve promised him I will mention it at my appointment in October, but he wants me to see a specialist too to get some images done. A big part of me is not wanting to know.

And so, I focus on living my best life, working hard, volunteering hard, eating well, exercising, spending time with friends and family, making memories - ‘wearing out, not rusting out’, just as my new t-shirt says f5135dcb53f6218d0e3ec19feb74d51b-huge-94

I am at peace with the chance that I may ‘wear out’ early, but hopeful that I will live a long and healthy life like my grandma who lived to be 103, 101 years independently in her own home!

 

Re: Let's Discuss..fear of cancer recurrence

Posted by Whitelilies on Aug 26, 2020 1:26 pm

Lacey_adminCCS‍ 
Hello.....what a HOT TOPIC.....
Fear?Of?Recurrence?......oh ya.......like daily! and nightly too!
I am 23 months, post removal of tumour (but hey WHO is counting???......me !!! )
I have been placed in the 5 year Survivorship Program (Ontario) for  Colo-rectal patients.  They will "monitor" me, for 5 years.
I guess in a way....this makes space for NEW patients, with the (surgical) Oncologist.
This "clinic" is arms length from the Oncologists.  If the Nurse /test results show "something", they are fast-tracked to my Oncologist.
I get FEARFUL at times of tests, and waiting for the results, and EVERYTHING in between.
Every  6 months, rain or shine, there is a CT scan.....and CEA blood work.  
I was told that "my area of cancer" has HIGHEST chance of recurrence in the first 2 years.....I am still in that range.

I try to......be positive (not easy).....walk.....breathe in nature.....eat right......be kind to others........BUT: HEY....I know I did ALL these before the DX arrived at my "back" door....pun intended!!

Let us all support one another.

Warmly,
Whitelilies

Lillian

Re: Let's Discuss..fear of cancer recurrence

Posted by Sipsi on Aug 26, 2020 2:19 pm

Oh yes. I find I often worry myself about re-currence . There are so many reminders everyday about it’s insidious nature.
No Smoking signage, people with that raspy cough, cigarette buts left around.  
News articles and TV info about health often mention lung cancer along with heart disease and other ailments as being top killers in society at large.
So many people have been touched by it in their lives, and they talk about it. I don’t necessarily want to hear and don’t want to share, but even if you just ask how they are doing in a general greeting they take that as a signal to tell their whole story..
Even though it’s three years NDE for me I know they are watching two black spots in my other lung. They ordered a CT scan for next check up which frightened me even if they say it’s just routine. And when I get a little cough, or thick phlegm, or my voice disappears on me, it all makes me anxious.
The Covid threat make things harder. There’s little  or no travel In the foreseeable future. My three sons are living out of the country and it was Xmas that I last saw them. 
It didn’t help this morning when on Face Book the little Pooh Bear cartoon was of him walking with Piglett with the caption reminding us to greet everyone  with delight since you never know if it might be the last time you’ll see them.

Re: Let's Discuss..fear of cancer recurrence

Posted by Runner Girl on Aug 26, 2020 2:47 pm

I worry about cancer recurrence every day, as every day I am reminded of my cancer when I take my tamoxifen pill.  I take my pill and cross my fingers that it is doing it's job and hope that I'm avoiding as much environmental estrogen as I possibly can.  My breast cancer was ER+ and HER2+, labelled as Grade 3 - aggressive.  I have a list on my fridge from the oncology pharmacist of natural health products with known estrogenic activity so I can avoid them completely.  I also have a list of the types of foods I should be eating for my brand of cancer.  I exercise and run daily to remain healthy in body and mind.  I receive acupuncture for the body pains and hot flashes the tamoxifen brings.  I truly hope I am doing enough to keep the cancer from coming back - was told by my oncologist in February 2020 that I am cancer free.  I continue with ultrasounds every 6 months, so far they have come back clear - this surveillance, while appreciated, reminds me that I'm not entirely out of the woods yet.  

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

Re: Let's Discuss..fear of cancer recurrence

Posted by Trishfw on Aug 26, 2020 3:10 pm

Fear of cancer recurrence.  Good topic.  Brings to mind another question.  When diagnosed with breast cancer, early stage, surgery,  tumour removed with good margins, no lymph node involvement, now in Chemo to be followed by radiation.
Once tumour was removed I was told they got it all.  Now with adjuvant therapies underway I wonder what “we got it all” meant.  Am I considered to have cancer?  (weird I know)
I believe I’m still in a stage of denial/acceptance of my diagnosis.  Anyone with words of their experience with this thought would be appreciated.  I feel I’m fighting an invisible foe.  
As far as recurrence my choice will be to face it head on as I am doing now.
Each of us know our bodies, we need to hear what it is telling us and act accordingly.  Trust in our medical partners to help us through whatever is ahead.
When we get to 1 year anniversaries or 5 year anniversaries or what ever time we chose take a moment to reflect and smile.
Cancer is only part of our journey not the whole story.
Mamabear‍  I’m with you, 
 

Re: Let's Discuss..fear of cancer recurrence

Posted by Cait on Aug 26, 2020 3:19 pm

How can we NOT always have the fear of recurrence?  Especially when so many of us experience it?!!?  There's also the hope we can help others with a diagnosis, or treatment plans, even if just by listening - and then fear of being rejected by that person's survivors if the person doesn't make it.  It's all part of the journey that we are taking.   I've been incredibly lucky - still fighting... but good medical support, and terrific moral support from a few (sadly, not always who I thought would).... thankful for every day, and watching my diet to help keep healthy enough to fight again when/if it happens again.  I honestly don't think there's any way to avoid the fear.... but to minimize, for me: I think about the processes and medical advances since my first time, and hope that the system will help me again in the future.  I'm not ready to die, not yet.... just starting to live!  THAT's the only way I know of.

Re: Let's Discuss..fear of cancer recurrence

Posted by Maly on Aug 26, 2020 3:52 pm

The webinar was great because it acknowledged that we all have a fear of cancer recurrence and that is ok. I really like how she went through the warning signs of when our worries are taking over. I am almost 3 months post radiation therapy and the fear of recurrence is there. I try not to let it take over. I don't think about it every day. I practice some of the things she mentioned in the webinar like mindfulness, self care, gratitude and being outside in nature to think of other things. This has been so helpful for me.
I think the fear will come whenever there is an appointment or another scan. I feel comfortable with asking my doctors questions. It helps with the real risk and the perceived risk that she talked about. 
I appreciate everyone's comments. I find it helpful to know that we are not alone. 
Thank you! 

Re: Let's Discuss..fear of cancer recurrence

Posted by Beespecial on Aug 26, 2020 5:07 pm

Hi everyone, 
First, I'm glad to have a place to talk about this subject! And any subject, For that matter, with people who understand. We are all different but we have a common thread in our lives. 

Quick background. Jan 2017 diagnosed with 10 cm lobular stage 3 breast ca. Er/pr+, her2-, non genetic. I was 51. Four months of ac Taxol chemo. Lost all my hair. Right radical mastectomy, with 7 positive lymph nodes. 3 months of radiation. Then a 'you're cured' status. Tamoxifen after that. When discussing recurrence with my med onc, he said if the horse is out of the barn we'll deal with that later , in the meantime go enjoy your life. Which I did. The fear was there but not omnipresent.  Jan 2019, diagnosed with metastatic breast cancer in the bones. Mostly in my right femur. Changed to Letrozole daily. Plus zolendronate q3 months.  few months later, progression to spine and ribs. Changed to xeloda and ibrance. Couldn't handle the ibrance so now just xeloda and zolendronate.

I'm 55 now and see my med onc every 3 weeks for blood work and follow up. I get bone scans and CT's every 3 months. Right now I have stable disease, still just in my bones. 

So, I ask you : how can fear not be present every day? The stable disease news is great but wears off quickly. I'm not in major anxiety everyday but honestly I have my moments every month. Including thoughts of my death, etc. 

Here's my dirty little secret : I don't like to tell people the absolute truth. I don't look like I have cancer . My hair is glorious again after 3.5 years. I feel really good. I live my best life. 99% of people in my life have no idea, and sometimes I bold face lie to people, particularly by omission. I hate the cancer label. I really do. I already went thru that. People are so nice, but treated me differently. They say 'you're so brave' and sh*t like that. I just want to be me. 

Everyone has a risk of dying. People walk around with heart disease and no one says 'you're so brave, I don't know how you do it'. I'm not a warrior or winning or losing a fight. I have cancer. And I'm doing my best to live in the present. I take my drugs and take care of myself. I hope for the best, and I hope that more options are there for me when I have further progression. 

Sorry, now I feel like I'm ranting. 

The fear is real. The stigma is real too. 

​​​​​And the wine helps. :) 

I think it's super helpful to talk about this. I know that it's impossible to know what it's like to have metastatic disease or recurrence until it happens. It feels like a death sentence, but that's not really true. You can live with cancer. The only question is how well and for how long. Not easy. 

Thanks for listening and sharing. 
Belinda 

 
Belinda

Re: Let's Discuss..fear of cancer recurrence

Posted by Whitelilies on Aug 26, 2020 8:25 pm

Beespecial‍ Hello Belinda
I wish you ONLY the best!
I too, "lie"......I feel I have to.....I basically do NOT tell many people.....select few.
I do NOT want the "fluffy words" from their lips to my ears...."you are this/that/whatnot".....I am NOT strong.....I am just following doctors' orders etc....
I do NOT want their pity.....save it.....I do NOT want to be treated "differently"......you got it: we are STILL ourselves.
I do NOT want to be "ignored" for THEIR fears on the Big C.....

Less Info Is best.

Less Is More.

Stay Strong Belinda!  Keep Posting, ranting, venting, sharing, laughing, crying, whatever is needed....

Warmly
Whitelilies

Lillian

(I struggled even telling the "few", where "it" was......not a lovely location to discuss over High Tea....it was "downtown"......where there is NO parking !!)

Re: Let's Discuss..fear of cancer recurrence

Posted by WBCumm on Aug 26, 2020 8:42 pm

My cancer treatment was in April-May-June 2018.  The next month I was told the cancer was gone.  I've had regular examinations since then and everything still looks good.  In 3 more years I can declare I'm cancer-free.

Since then I've been preoccupied with my recovery from the treatments (simultaneous chemo and radiation).  It's been brutally long journey.  In fact I'm still on meds for depression and anxiety.  I haven't let myself think about future cancers as I'm still dealing with repercussions of the first.

My fear is that I'm now on the Cancer Train.  I've met many people who are on their 3rd, 4th, 5th bouts of cancer.  Is it just a matter of time for me?  In November I'll be going for a biopsy for skin cancer.  Is this the beginning?  Cancer #2?  What's next?

But I'm not letting my circumstances get me down.  Call me naïve but I'm currently living as closely as I can to how I was living pre-cancer (Covid-19 notwithstanding). I'll save my worrying for when I really do have something to worry about.

Brock C.





 

Re: Let's Discuss..fear of cancer recurrence

Posted by Wendy Tea on Aug 26, 2020 8:59 pm

WBCumm‍  Hi Brock. You have had a tough time and that leaves all kinds of scars. I was lucky. In spring 2019 I had a mastectomy. Because I took this drastic action I did not need chemo nor radiation.  This means I didn't have any of the debilitating side effects from chemo. I am not going to waste time thinking about a recurrence. Especially worrying about something that may never happen. Today I am healthier than I have ever been. Today I walked 6 miles. I am busy living life as best I can during covid-19.  I hope you are able to build yourself back up so you can live a life free of fear too.
Healing takes time and opportunity. Wendy Tea

Re: Let's Discuss..fear of cancer recurrence

Posted by Tilly59 on Aug 26, 2020 9:49 pm

I almost fear the opposite, as crazy as that sounds.  I was diagnosed with stage 4b uterine cancer.  I had a full hysterectomy followed by chemo and radiation treatment that ended about 2 years ago.  I was told by the oncologists that I was very ill, and had 2 to 5 years to live.  I am no longer working, and am receiving disability payments.  In December of this year, I will turn 60 years old.  I'm terrified that my money will run out before I pass away.  I live with my older sister and her husband, who are both in their early 70s, and not too healthy themselves.  I have always been very independent, and don't know what I'll do if I end up living for a much longer period of time than predicted.  This is a horrible situation to be in, and it probably explains why I can never relax.

I also have other illnesses, including type 2 diabetes, asthma, and psoriasis on the back of my neck and face.

Boy, it sounds very depressing when I write this out.  But it does help.  Take care everybody.