Cancer Relapse Scare : Dealing with Anxiety of Cancer Returning | Stephanie's Story
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- Опубликовано: 18 окт 2024
- Hey, it’s Stephanie with The Patient Story. Normally, I try to avoid talking about my own story - there hasn’t been much to say lately, which is great. That means remission has continued.
I’ve been in remission for 4.5 years from my stage 3 non-Hodgkin lymphoma (primary mediastinal b-cell lymphoma or PMBCL) but recently felt some symptoms that were unsettling, including fatigue that wasn’t improved with more sleep, a feeling in my chest that was foreign with a persistent, light cough (tested negative for covid several times), back pain. (This isn’t the first time I’ve “felt things” but the first time it felt a lot more worrisome.)
What I realized when my emotions came flooding back to me ahead of an appointment with my hematologist-oncologist: I was scared. Have been scared.
And cancer wasn’t “in my rearview mirror” as much as I’d thought. It was, and is, very present in my life.
Survivorship is hard. There are fewer, if any, official follow-up appointments. The drop-off in care can lead to a lot of unwanted thoughts. If you feel this way, know you are not alone. I hope this video sharing helps with that.
Next update: PET/CT scan in mid-November 2021.
Full story & transcript → Updated Soon at www.ThePatientStory.com
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I appreciate what you have done with this wonderful platform! I was diagnosed with ovarian cancer August, 2019, and every day I am grateful to be able to enjoy time with my loved ones. Even with the emotional support that I receive from family and friends, survivorship for me is difficult and emotionally brutal. I often tackle the fear of recurrence and the corresponding treatment for ovarian cancer. Your platform encourages me to stay strong, accepting, and positive. My prayers are with you, Stephanie.
KC, wow, your message really resonated with me. I also appreciate the support from loved ones, but it can be extremely isolating still. I am so, so glad that TPS has been helpful in some way. Working on making it better for people like you. Thank you for your prayers ❤️. I'm sending you positive vibes and prayers to you, as well. -Stephanie
Praying for you Stephanie. I recently found this site and it has been so beneficial to me. I was diagnosed with NHL large diffuse B cell in June of this year. I finished my last chemotherapy on October 27th. The midway pet scan showed no evidence of disease. I had a spinal tumor and surgery to regress it from my spinal cord so I would not become paralyzed. Seeing this post helps me to put in perspective how much everyday is a gift. Thank you for creating a place for NHL discussion.
Sondra, I am so grateful for your prayers. First of all, I am SO happy to hear about the midway scan progress!
Thank you for taking the time to share your own story with me, I really cherish the connections on here to say that we are not alone. And your message helps fuel me to do more. Sending you hugs ❤️ Stephanie
Thank you for sharing and taking us along this journey with you. I have myeloma and I draw strength from the stories of people like yourself
Hi Laura, first, thank you for sharing about yourself. I am so glad that putting this out there was helpful, it’s what motivates me to share my story and try to grow our platform ❤️. -Stephanie
Laura, I have myeloma too, I just got my numbers from a bone marrow biopsy today and they were great after a year of chemo!
Stay strong and hang in there!!
God Bless!
Thank you for being transparent and reflecting more realistic image of survivorship. I (as a current NHL fighter) always say its OK to be strong and feel scared/cry sometimes. But the most important thing I learned is to live everyday as it goes by. I don't waist the time thinking about what will happen next. Enjoy the good things in every day. If something negative happens it can be dealt with once it happens. Please don't live in anxiety while waiting to get your PET/CT scan results in mid-Nov.
I couldn't have said it better myself. It's the balance of feeling what we feel to process it, and then hopefully being able to let go and live in the moment, as you said. Thank you so much ♥️. -Stephanie
How are you now
I’ve been following The Cancer Patient for awhile now. I’m a 22-year survivor of breast cancer, btw. I just wanted to wish you all the best. Thank you so much for what you do.
Thank you for tuning into our platform. So happy to hear you are a survivor! Wishing you the best, and grateful you took the time to leave this message. -Stephanie
The Patient Story Thank you! Please let us know how you’re doing, when you feel like it.
I felt that. The fear. The uncertainty. The anxiety. The unfairness of it. The thief of contentment. This is SO hard! I send you all the healing thoughts. Thank you for the good you have done for so many of us. 💕
Misty, thank YOU for this message. What you wrote is so poetic - "the thief of contentment." I couldn't find the words but I feel comfort in the community I feel from people like you. ♥️ - Stephanie
@@ThePatientStory ❤️
Hi Stephanie,
You will be absolutely fine. It’s fine to feel slightly vulnerable at times but to only come out stronger. You are the support system for so many people following you.
You are in my prayers today and always ! More power to you ♥️
Aprajita, I agree - the vulnerability is an important part of the process. I really appreciate your message of support - and for your prayers. ♥️ - Stephanie
You summed it up well. When in doubt make that appointment. The anxiety of every procedure can feel overwhelming. It does not go away that fear but if you have a pulse your purpose continues.
Dearest Stephanie - even though you haven't been diagnosed yet I felt, while watching your fear + apprehension throughout your video, the same feelings you were having.
I have watched many interviews that you have had with fellow brave men + women, just like yourself, who possess the ability, or found the strength deep inside, to go to the Dr when those certain, what I consider very scary, symptoms arise.
I am amazed at your ability to overcome the fear that comes with the
"what if it is" thoughts that must be running wild in your mind. I am 100% sure that if I ever found such symptoms I would not have the needed inner strength to follow the path that one must pursue.
I don't check my breasts for lumps. I don't get pap tests. At the 6 week check-up I had after having my daughter I received a call informing me of "changes in the cells of your cervix" + telling me that I "need to come in for a repeat pap smear." I never got that extra pap smear + that was 16 years ago.
I very calmly forgot that call. I believe that my body might mess up every now + then and I'll notice a symptom such as a pain in a certain location. But as soon as I do I don't concentrate on it. I tell myself that my body will "deal with it when it's the right time" + it goes away.
My "crazy way" is right for me - I could never put myself in a position where I might hear "you have c▪︎ncer" - because as soon as my mind hears those words that confirm the existence of such a horrible disease I believe my natural healing will quit healing itself.
I believe in mind over matter.
I was diagnosed years ago, Stephanie, with "conversion disorder." It is when psychological trauma causes physical symptoms with no physical cause. I have chronic "pelvic pain syndrome"( constant shaarp pain), was in a deep coma for 10 days with cause unknown, once my feet turned ice cold + blue with no pulses for a few hours, get bouts of narcolepsy, anxiety attacks that cause a catatonic state, fevers with no cause, etc. I have Bipolar 1.
Stephanie - I'd like you to do a RUclips search for Dr Burzynski + watch his documentaries. I'll be praying to the greatest miracle worker + healer, JESUS, many times a day every day + ask him to heal you totally + forever from this illness.
You are such a sweetheart + advocate for those who have suffered from this disease at one time. I hope my prayers, along with yours, will cause your symptoms to fade + be replaced with a most amazing feeling of peace in your heart.
You'll know that Jesus is now your healer + you'll never have to fear this disease ever again!
Sending love + healing prayers to you dearest Stephanie!
From Juliette ❤
Juliette, words can't express how much it means to me that you took the time to write in such great detail about your own experience and story, along with such kind words. Thank you for sharing. I am so glad to understand so many different perspectives like yours, and your phrase "mind over matter" is helpful, especially in times when doubt creeps in. Again, thank you for taking time out of your own day to share all of this. My heart is full ❤️. -Stephanie
Praying that you will be fine, so that you can continue providing comfort to many of us.
Emerson, thank you for your prayers ♥️. -Stephanie
Stephanie thank for sharing this video. I am in remission from Hodgkins Lymphoma (less than 1 year)and have those exact same feelings every day. I hope and will pray for you and please keep us posted. I am glad you have a great support system like I do. I want anyone seeing this going through this dreaded disease I started my RUclips channel because of my battle with cancer and I have a cancer survivor video if anyone is feeling down and anyone can contact me via instagram if they want to talk thank you so much for sharing your story.
Thank you for being so kind. It really is so wonderful to meet (online) so many kindred spirits like you. ❤️ -Stephanie
Prayers to you. Prayers to all, caregivers, fighters and those fortunate not to understand. I thank you for sharing and starting your series. It has given me and countless others strength.
Thank you for your prayers. I really appreciate you taking the time to message me ❤️. -Stephanie
Hi! PMBCL survivor here. I finished chemotherapy 2 months ago and was just thinking about this. Thank you so much for taking the time to film these moments. Since I am still trying to figure out what I'm anxious about, your video helped me understood my worries and line of thoughts. It makes me not feel alone. Praying for your health too! Bless you ♡
First and most importantly, I am so glad you're through treatment. I hope you are able to rest and give yourself grace during this time. I remember how I had to process so much after* treatment ended and it can take up a lot of energy and emotions.
I am so glad that this video was helpful. I am still feeling good :) very grateful. Sending you hugs. ❤️ Stephanie
How are you now?
Hi Stephanie, been listening to alot of your stories on this channel for professional development and self improvement in my Nursing Career, lve not left a comment before but after watching this l just wanted to reach out and say someone is thinking of you and praying for you all the way from Melbourne Australia 🇦🇺 🙏
To You in Melbourne, thank you so much for taking the time to leave such kind words! More than anything, I so appreciate you watching these videos to help you in your nursing career - thank you for dedicating yourself to a position that will undoubtedly help countless people and for going above and beyond to try and do the best you can. Sending you big hugs! -Stephanie
Thank you for sharing and making this video ❤❤❤ I'm hoping you are getting all the support you need during this journey.
I found this channel but never heard your story, ty for sharing
You are saving lives! You are a gift to the cancer world.
Always be cautious and be an advocate for your health as well. I have something in my lung that we are watching for another 3 months. My emotions are high!
I am so glad you are proactive and having this checked out. Positive energy and prayers you way. I have MM and diffuse systemic scleroderma so it is no fun dealing with all that we do.
Hello Stephanie, I’ve been watching your videos and wondering what your story was. You’re using your talent, empathy and experience to help many people. I’m praying That your Results will be good news and I’m also sending you positive healing vibes from hawaii. Aloha
Keeping you in my thoughts and prayers and thank you for sharing your journey ❤️
Sarah, thank you for those thoughts and prayers - will be needing them all as it gets closer to scan date :). ❤️ -Stephanie
Praying for you Doll💕 I enjoy your platform! NHL survivor here as well🙏🏾
Kim, so glad you are on the other side - thank you for your prayers. I appreciate you taking the time to message the support :). -Stephanie
@@ThePatientStory Thanks Beautiful❤
You’re so great. Thanks for sharing and for all you do. ❤️
Oh thank you, Sue. I really appreciate your kind message. -Stephanie
Five days ago, my oncologist confirmed that I have Diffuse Large B-Cell Lymphoma. On Tuesday, 2/14/23, I will begin six cycles of Chemotherapy. I appreciate “The Patient Story” as I weave myself back to health. I am 72, but still very active and I feel healthy at this point in my life. I hope to reach total remission. Thanks! Wilfred Wong
Wilfred, sending you all positive vibes and virtual hugs as you go into chemo this week. I am so glad you found us - please know I'm thinking of you. -Stephanie
Sending prayers 🙏❤
Thank you so much 🙏
Thank you so much for this video. Post cancer anxiety is very real, but for some reason we, as survivors, don’t talk about it as we should. Perhaps because everyone says that we should be thankful for being in remission, and not to think about the disease as if we wanted to get sick. I just explained to my husband that is not that I want to attract the disease or anything, but it’s more about this panic that I feel when I have weird symptoms, so I need to confirm that there’s nothing to worry about. I had stage 3b rectal cancer, and I spent a year going from doctor to doctor trying to explain to them that there was something wrong with me until one doctor went beyond her area of expertise, and sent me to the right specialist. I suppose that made me extra vigilant. I’ll be 3 years in remission this year and I still have to look at my stools every time I go to the restroom. I don’t know if that anxiety will ever go away, but it helps to know that I’m not crazy and that other survivors go through it too. Thank you!
Monica, you put it so well there - that feeling of anxiety and WHY we feel it in the first place. I totally understand what you mean by sharing with your husband that you don't want to "attract" the disease but we are healing from a very traumatic event of being told we have cancer. I think it would be harmful to pretend that we don't have these feelings (everyone processes them differently, of course). And that vigilance didn't come from nowhere. So GLAD to hear you are 3 years into remission and sending you big, big hugs as you continue to get further and further into that remission. Thank you so much for taking the time to share your thoughts! -Stephanie
🙏🙏🙏🙏🙏. Prayers for you sunshine ☀️
Kenny, sending you sunshine-filled prayers to you, as well. Thank you! -Stephanie
Sending only positive vibes and prayers. 🙏💛
Thank you so much! -Stephanie
Thank you so much for sharing your story. I have never responded to any type of video but when I saw yours, I knew I had to reach out. We could be twins separated at birth (except for a 20 plus year age gap). Lol. So much of what you described is what I recently went thru and what I needed to hear mentally and emotionally. Prayers and blessings.
Robin, I am so glad that you did respond this time - thank you for taking the time. I hope you are well in every way - physically, mentally, and emotionally. Prayers and blessings right back to you ❤️ . -Stephanie
@@ThePatientStory Aww....TY. Your reply definitely made my day. Wishing you happy and healthy prayers and blessings. And please tell your mother she did a great job!
I have been think about you since you posted this video. Please update us on what happened with you. My prayers are with you Stephanie :)
Hey thank you, I should have uploaded a video update! I will soon just so people see the process...
There was some activity but I am technically still in remission so that's good and the most important part :). I will probably opt for another scan in 6 months. I am grateful for your support. 🙏 Stephanie
@@ThePatientStory my toughts and prayers with you Stephanie. I hope the repeated images indicate that everything is under control.. Remember that the most important thing is to take care of your mental health as well as your physical health 👍👍👍👍👍👍👍👍👍👍👍
@@ThePatientStory Good to know!
Wishing you all the very best.
Sending hugs and best wishes to you . ❤
I check this video nearly everyday waiting on an update . Hope you are ok .
I am so sorry, yes, I am still in remission. I had a tough time trying to translate results on my PET CT scan and then got buried in other projects. I should have released a quick update (I will soon) - thank you so, so much for your concern. ❤️ Stephanie
@@ThePatientStory YAY !!!!!!!!
@@ThePatientStory so glad to hear that Stephanie! I’m anxiously airing for an update because I’m currently dealing with something similar. I’m a Hodgkin’s lymphoma survivor and am in remission for a couple of months now. Recently I realized and small lump on my neck again, I went to my doctor he did a physical and told me he’s not worried about it at all. But I can’t stop thinking about it! It’s a relief to see that it’s possible to have a lump and it not always be a relapse. Hope your doing well Stephanie!
Wishing you well, and that it's nothing, for your November scans. I have some idea what you're going through...pCa survivor here.
Vic, so glad that you're through treatment for pCa and appreciate that you shared about yourself, as well. If you ever want to share your story, please let me know. stephanie@thepatientstory.com. Thank you for your well wishes. -Stephanie
I hope you are ok, I have the same felling every 3 months. I am 1,5year afrer kimo. Life is not the same after cancer.
I really appreciate your message, thank you. It is definitely not the same and just knowing we have a community together of support makes a great difference. -Stephanie
I had Pmbcl myself(been in remission since January 2020). I have a follow up with my onc in February and if I’m im all clear, follow ups will only be done 1 a year instead of two. I was under the impression pmbcl very rarely comes back after 2 years.
Hey Mitch, you are right, I heard the same thing - 2 years. I will say that I had something called "double expressors" so not sure if that messes with the statistics... but I will be getting more follow-up with my oncologist this week after some activity showed up on my latest scan. Fingers crossed. -Stephanie
I just started on my cancer journey thanky so much 4 sharing life is so different now I can't stop shaking and crying soo scared I have my first scan on Monday 4 lung cancer I can't think of anything else can't get that c out of my head any tips 2 help
I’ve had lymthomia for many years in and out hospitals been told I’m in complete remission over two years now don’t know if it will relapse
God bless! 😎💓
Thank you, you too! ❤️
Is there an update?
I hope and pray that she is okay..
God Bless
🙏🏾🙏🏾🙏🏾
♥️
🙏🏽🙏🏽🙏🏽 TGBTG🙌🏽😇🥰💕
I rationalized my symptoms, cancer was never on my mind. Even after they told me it took a couple weeks for me to believe them. At first I was tired and felt sick off and on for a couple of month (Nov/Dec 2021). Each time I tested for Covid. My family thought I was a hypochondriac even though that was never part of my personality before. Then I got chest pain, it felt muscular/skeletal, eventually I settled on believing it was costochondritis because I did get sick for a while and coughed a lot. I did see a doctor because of the pain and they did an EKG and chest X-Ray to rule out heart issues. Then the Dr thought it could just be heart burn. I changed my diet and lost weight over a few months. I was happy about the weight loss, I needed to loose 20lbs anyway and thought it was just the change in diet. I should have known it was too easy to lose weight without trying very hard. I saw my doctor 3 times and it wasn't until I had a growth on my chest that he ordered a CT. I ended up having a high grade aggressive lymphoma, 9x6 cm in the chest that had destroyed part of my sternum, a rib and a vertebrae. Stage 4 PMBCL. I finished chemo 6 months ago and my scan then was good. Now I feel like I'm just waiting to see if it comes back while learning to get back to life. I still can't walk for very long because my joints (ankles, knees and hips) all hurt. The DA R-EPOCH chemo for this was brutal.