Posted by lizj on Aug 27, 2020 2:13 am
I started my cancer journey with a routine mammogram. The doctors saw a suspicious area and after biopsy nothing showed up so as a preventative measure I was given the choice to remove the area. When it was done I knew something wasn't right because the surgeon had a look on his face...can't explain it. I get called in to the surgeons office for a follow up and I got to admit after cancer (which in his previous meeting said he would be surpised if it was). I couldn't hear anything its like i went numb and stayed that way through sentinel node surgery. The surgeon called right away to say no lymph node involvement.
I went through Radiation and felt, after I heal I'm good as gold, I mean chances of recurrence for this type of cancer are very slim. I left it behind but sadly the fear of cancer would come to the surface. I ended up with cellulitis on the breast that just got done radiation. It was so red and if you saw a picture of what inflammatory breast cancer looks like...I thought I had that because that is what my breasts looked like. I went through daily iv antibiotic treatments, lots of antibiotics and took almost a good 6 weeks for it to settle. It was during this time, I ended up with a huge lump. I went to the surgeon and had a biopsy done, no cancer. I'm relieved but still 3 years later, there is still a lump and it worries me.
I am now scared because I am coughing all the time, I had covid type symptoms so the assumption was covid, so I was put on self isolation for 3 weeks at the beginning before tests. I felt better, but cough didn't go away. Its now August, the cough has remained, I only now got told I have inflammation in my lungs, tests for pulmonary function are waiting because of covid everything is slowed down. I am convinced cancer is my lungs..I am not convinced I am cured at all. I live in fear, especially now being so sick, sleeping all the time because I am so exhausted, coughing non stop so I can't go out in public. Having heart palpatations and wondering how long til I have a medical emergency.
Perhaps in the end it will be simple, at least that is what everyone tells you. I'm a mom with a daughter with disabilities her world will spiral if I should get sick...I am so scared for her more than me.
Everytime I get sick, every time I feel a lump, I wonder, "is this the start of the recurrance" Thanks for letting me share these feelings, I can't say them to anyone because all anyone ever says to me, now now it will be ok, shouldn't think that way. I feel like I have to put on a show to spare everyone else's feelings and i can't be honest and frank with my friends or family.
Posted by Boby1511 on Aug 27, 2020 10:40 am
new aches and pain scare me. I wonder if this is the beginning of the end. If the pain is just progressive from here on. I wonder how much I can endure. I wonder if I will make it to maid.
Posted by Kims1961 on Aug 27, 2020 11:39 am
First - somewhat like you, when first diagnosed with IDC - the news kept getting “worse”...from its a very small lump, simple lumpectomy and I’m back to work in 6 wks, to being off for almost 2 years. I was also left with a bump which i was sure was cancer. My oncologist said it wasn’t but that we would continue to “watch” this area. Ahhhhh...watching an area, or waiting for the “shoe to drop” can be stressful because a recurrence means so much more than the first initial diagnosis.
I appreciate your honesty and glad you are sharing. Sometimes just getting it off our chest is enough and this forum has been my life line. Sometimes it is hard to share with loved ones because we can read the non-verbal/facial expressions so well. Everyone wants us to be “cured” but sometimes that is not the case.
In my journey i started having heart palpitations, racing heart, fatigue. I wondered if it was tied in to this “spot” we are watching. I started yoga, gratitude, distraction but although this helped, I still had these issues. I went to my family GP and started on some medications. They really helped to just give my body a break from the worry, while i tried to incorporate more good health strategies.
The other thing I did, which may seem ironic, was took a course of death and dying. It really helped me to understand death but more importantly I was able to prepare myself for what I would need to do for my loved ones, in case i did die, or in actuality when i die ( as we are going to die someday!) Somehow feeling in better control of the “worst case scenario” , helped me to live life.
You mentioned your daughter and that is a very big worry. Are there any services in place with her that you can talk to about what supports there would be for her, after you are gone? Family? Friends?
Thank you for your honesty . Please feel free to continue to vent/share here anytime. As well , please feel free to message me.
Posted by Kims1961 on Aug 27, 2020 11:58 am
Just by the number of responses , the honesty, candor, people are sharing Is so powerful. I know life could end for all of us at any point in time, it may not be cancer that “gets” us but certainly having cancer moves the idea of death/dying to the fore front.
What has helped me is hearing from others, who have had a recurrence, be able to share here and describe how they are still “living”. Cancer treatments have come a long way and although there may not be a cure, there does seem to be some options , in some cases, to be treated like a long term chronic disease....for however that “long term” may be.
Humour, honestly, heartfelt - what a great discussion. Kim
Posted by BeamBlossom on Aug 27, 2020 2:40 pm
Now that I have completed treatment, I am at this time cancer free, I have the chance to resume living my life just the way I did before my diagnosis. I choose to do that. Thanks to God and modern medicine this is a joyous time. If I invest one day or even one hour of this new lease on life time, to worrying about a recurrence, I rob myself of this joy, I might as well have not even been cured. I feel that cancer took so much from me already, I'm determined not to let it spoil this wonderful cancer free time.
Should I encounter a recurrence in the future, I will tackle it and overcome it again, but that day might never come so I don't want to ruin the joy and celebration of living a cancer free life with the anxiety of wondering how long it will last. To do that, is like taking good, healthy, hours of life and handing them back to cancer.
Posted by Pinto on Aug 28, 2020 1:03 pm
Posted by Muggy on Aug 29, 2020 11:15 am
i just went through treatment for stage three triple negative aggressive breast cancer. I had chemo for 5 months, then two surgeries back to back, then 30 rounds of radiation and then another 7 months of chemo. During this time I had terrible side effects because I’m allergic to chemo, I burned terrible from radiation, then I developed and abscess on the lymph nod incision, then I developed fluid in the tumour site and it was drained 2 times, now I have lymphodema in my left arm. I finished my last chemo in June 2020 and then I had to call my replacement oncologist and ask what’s next. That when he told me he was finished with me. My oncologist went on maternity leave in March and I’ve been tossed between oncologists since. The second oncologist said my cancer normally returns in a year so why am I not being monitored!!!!! I have two young daughters that need me, I can’t leave them. I want to be a grandma someday and the fear I’m dealing with right now is crippling me. How do I cope with the fear of reoccurrence, I am terrified and I feel like I’ve just been thrown to the wolves. What am I suppose to do!
Posted by Pinky on Aug 29, 2020 1:38 pm
I am a two time survivor and as most of you the thought of a recurrence is always in the back of your mind not matter how long you have been cancer free.
I know that after the first time I was diagnosed and finished my treatment I would just about drive myself crazy whenever I felt a bump, had pain somewhere or even a headache.
I talked to my oncologist (a great guy) and he helped me by telling me that if I have a pain or a bump that I should wait for two weeks before calling him and if it was still there after two weeks I should make an appointment. This really saved me from going over the edge a few times. You know when you wake up and have a sore back and you think what is that pain?
The second time that I went through treatment it really was different. I know what was coming and I also knew that I had made through the last time so I knew I could do it again.
I went in for a mammogram yesterday and I am sure any of you that had breast cancer no that this appointment is one that makes you worry but if it was not for a mammogram the first time I had one I would not be typing this note.
Just remember that you have a lot of people on this forum that would be there for you if you do have a recurrence and will help in any way they can.
Stay Safe Everyone.
Posted by dmarie on Aug 29, 2020 4:30 pm
I have not been checking in on this site as often lately. Much as I appreciate all of you (I’m not sure I could have gotten through 2019 without you) I was just trying to not think about the big “C” as frequently.
My Leukaemia has been in remission for 3 years now thanks to a daily dose of Imatinib and I am 14 months past treatment (mastectomy, chemo & radiation) for my breast cancer.
People always tell me what a wonderful positive attitude they think I have. It’s a good thing they can’t get inside of my head at four AM when I wake up with an odd pain in my side or think there is a new weird lump in my armpit haha. My thoughts go right away to it being cancer taking another run at me.
I don’t dwell on it too much and generally just get on with enjoying daily life but it is always there hovering in the background.
Posted by Elsie13 on Aug 29, 2020 6:10 pm
So at home, 6 or so days later, I googled and I thought I had stage 4 cancer and I though my 5 year survival was only 12%. (Bad idea to do random computer searches.)
A year or so later, my family doctor found that my cholesterol was getting a bit high. So I saw an endocrinologist at the Cancer Centre, who prescribes Metformin and Simvastatin for me. These two drugs are supposed to help keep cancer away, in my situation. (The first drug is usually for diabetes, and the second drug is usually for cholesterol).
I have lymphedema, resulting from the hysterectomy and so I wear compression stockings. So with the prescriptions and stockings, I'm not going to forget that I had cancer. At the same time, I don't want to dwell on it. I have great respect for science, for doctors and researchers. So I go for blood tests, and CT scans as prescribed, and hope for the best.
Posted by scaredysquirrel on Sep 2, 2020 12:58 am
Posted by Cynthia Mac on Sep 2, 2020 12:27 pm
Who convinced you of this? Is it possible to that that person is wrong?
I am convinced cancer is my lungs..I am not convinced I am cured at all.
In the line before, you wrote that you’ve been told you have inflammation of the lungs. Could the person who told you that be right?
Having said all this, I, too, have moments when my thoughts run away to the “dark places.” It takes a Herculean effort at times to pull ourselves back to the “light side.” I wish you well in that!
Posted by AdventuringSoul on Sep 7, 2020 12:41 am
Muggy, your story speaks to me because I feel like my oncologist is shoving me out the door too, a scant few months after I finished treatment. I’m feeling abandoned, and it was comforting to hear that someone else was feeling the same way too.
Being shoved out the door has caused me to examine my motives and to decide what I feel that I need. Do I need the follow-up and do I really want to continue with Oncology (because I DESPISE Oncology), or am I afraid to move beyond my cancer? These are questions that I needed to answer for myself.
Muggy, do you know what you need? Is it a doctor who will be able to spot a recurrence? If so, have you considered expressing your concern to your GP that the cancer may come back in a year? The reason why I suggest this is because it helps to open the dialogue with your doctors. They may be unaware of the risk of recurrence, and it may cause them to choose a different course of action. It also gives them a chance to explain their reasoning to you and for you to ask for clarification or to suggest an alternative, if you feel it’s necessary.
I also decided that I needed medical support, since I am struggling with mood swings and have potential heart damage from chemo. For these reasons, I was able to get into my hospital’s Cancer Survivorship Program. Muggy, does your hospital have something similar that you could get into?
You also mentioned that you’re worried that you won’t be able to watch your daughters grow up or meet your grandchildren. I admire that you have shared your concern so openly and candidly. I don’t have children, so I can’t imagine how difficult it is to worry over your daughters’ care. Someone else had wonderful suggestions about planning for children’s future in the case of a parent’s passing. By any chance, did you see the post?
Muggy, do you feel that you need emotional support? If so, have you ever considered joining a support group or a Wellspring program?
Thank you for sharing your experiences, Muggy. I identify with your feeling of abandonment, and I hope that you find some solutions so that you no longer feel that way. Please feel free to reach out if ever you feel alone.
Posted by AdventuringSoul on Sep 7, 2020 9:38 am
Over the past year, I have run to the surgeon or walk-in clinic in a panic a few times. They understand why I’m scared, so they check me out and reassure me that I’m OK. I feel silly for panicking, since all of the issues have turned out to be nothing, thank heavens!
The last time that I panicked was in July. I was lying in bed at 1:30 a.m. and I felt a hard ridge along the incision under my arm. In a panic, I called the surgeon’s office and left a message. Yet again, the secretary was great and called me back the next morning, and I got in to see the surgeon the following day. He checked me out and reassured me that it’s scar tissue from the surgery.
I’ve been trying to “get in touch with my emotions” recently, accept them and learn how to get them out in a nondestructive way. What I learned during this last panic is that it’s a manifestation of my fear of recurrence. More importantly, I told myself that it’s perfectly understandable to panic, that it’s OK to run to a doctor when I do, that no one is going to take me to task and that the episodes will likely decrease in time. Oddly enough, I have a feeling that just telling myself that panicking is OK will help to decrease the frequency of the episodes.
However, now I have another worry. At my appointment with the surgeon in July, I got the results of my latest mammogram. The surgeon said that it had found “scar.” That made me think of a woman I had met at my chemotherapy information session who had breast cancer 13 years ago. She had a lumpectomy at the time, after which her yearly mammograms kept finding “scarring.” The doctors only decided to investigate the “scarring” several years later, and they found that it was cancer. So now I’m worried that my “scar” is a recurrence, but I tell myself that the surgeon knows what he’s doing, because he does. I have faith in my surgeon’s abilities and judgement. I remind myself that he ordered a mammogram 6 months after my surgery and before I had radiation that came back clear. I also tell myself that I can voice my concern to him at any time and ask if a biopsy is appropriate, if I feel that it’s necessary.
And for now, I will concentrate on living my life and pursuing my goals because, if I spend my time worrying and not living and my cancer does come back or spread, I will have wasted all this time that I’ve had.
Posted by ashcon on Sep 8, 2020 10:21 am
Like you, once I finished my treatments in spring 2018 for locally advanced TNBC, I too started to become more aware of how much my fear of recurrence/mets was influencing my behaviour and my choices.
Like was I choosing to retire because I really wanted to? Or was it because I was convinced that my cancer was going to return and I didn't want to spend the latter part of my life at a desk?
Turns out it seems to be a little bit of both!
I love what you said:
"If I spend my time worrying and not living and my cancer does come back or spread, I will have wasted all this time that I’ve had."
A stupendous resource that helps me, and gets a lot of mention on this site, is the book, Picking Up The Pieces by Sherri Magee. Have you heard of it?
Almost every page had me saying," yeah, me too!"
I am tagging Muggy in this thread as I've seen you given her some great ideas.
Tip:To tag someone, simply type "@" before the first few letters of their site name and a list of matches will appear from which you can select the person you are intending your response.
Posted by AdventuringSoul on Sep 9, 2020 10:11 pm
Thanks for telling me about the book and for the tip on how to tag someone. I tried tagging you, and I hope that it worked. I had never heard of the book, but it sounds interesting and like it might be good for me, so I’ll see if I can find it somewhere.
You mentioned that you retired. How are you enjoying that?
Posted by ashcon on Sep 10, 2020 5:12 pm
Yes, the tag worked!
I'm actually semi-retired. Just picked up a part-time job at a local shop.
I'm really enjoying this no-stress life. I know that many get so much joy and purpose from their work, some even choosing to continue to work through treatment as a way to hang onto some semblance of normalcy, or to provide distraction to keep the seeping, haunting fears of recurrence at bay.
Not me. There's a little bit of me that wonders how much of my cancer was brought on by the stress I was experiencing at work, so I am very glad to be not working full time at this time.
Are you retired?
Posted by Muggy on Sep 11, 2020 12:26 am
Posted by AdventuringSoul on Sep 14, 2020 5:41 am
A stress-free semi-retired life sounds wonderful, and I applaud you for embracing the lifestyle. It sounds like things are going well for me. That’s fantastic!
You asked if I’m retired. I’m only 40 years old, so I’m not retired, and I have a number of full-time working years ahead of me.
Like you, I have a lot of stress in my personal and professional life, and I wonder that’s what caused my cancer. (I also wonder if it was partially caused by the fact that my mother smoked while she was pregnant with me.) These days, I’m conscious of my stress levels, and I’m trying to make choices that lower them. For example, I recently changed jobs, and I’ve been setting boundaries in my new job to avoid being overloaded with work, like I was in my last job. I’m also trying to change my pattern of behaviour and set boundaries with my family so that they change theirs towards me and treat me with more respect.
Someone told me that cancer is a gift wrapped in barbed wire. While I don’t believe that, I do believe that we can turn a bad experience into a learning and growth opportunity, and it sounds like you’re doing that. Kudos to you!
By the way, in case you’re wondering, I didn’t have TNBC; mine was triple positive. My cancer was multi-focal, so my oncologist and radiation oncologist wanted me to have a mastectomy. My radiation oncologist even went so far as to try to manipulate me into having a mastectomy by telling me that she only sees a case like mine 4 times a year. I chose not to have one because the surgeon didn’t think it was necessary, and he had done a good job on my case, so I had faith in his judgment. But this caused me to believe for a long time that I was at a high risk of a recurrence. I only found out my actual risk of recurrence recently, and it’s not that high, even though I’m young.
Posted by AdventuringSoul on Sep 14, 2020 6:21 am
I’m so glad to hear that you spoke with your healthcare team and that they’ve set you up with follow-up care. It sounds like you have a lot of support!
I hear you when you say that don’t feel like yourself. The chemo and Herceptin caused heart damage in me, to the point where I couldn’t walk far without getting winded. I love to walk, so it was heartbreaking for me to constantly pause during my walks. When I finished chemo, I told myself that it was time to start working on getting my stamina back. Every day, I would push myself to go a little farther before pausing, and eventually, I got my stamina and energy back. I also had neuropathy from the chemo, that faded over the course of a year, although my fingers and toes still get cold fast.
It sounds like you have a lot of people who will support you and help you in your recovery. Please know too that you can reach out anytime.
Out of curiosity, do you have any hobbies?
Posted by Lacey_Moderator on Sep 15, 2020 11:20 am
I love how you mentioned your actual risk this was important information shared in our recent webinar: Fear of Cancer Recurrence During COVID-19. Did you by chance watch the webinar? In it the speaker talks about knowing your 'actual' risk versus your perceived risk and how this can often help.
I encourage anyone struggling with fear of recurrence to watch the webinar: 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
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