Fear of re-occurence
Comments
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My oncologist said, when I expressed my fear of reoccurance, that this was normal, especially in the beginning, until I would find a 'strategy' to deal with it.
I really wonder if there is such a thing as a strategy. Like what? Staying super busy? Think of something else whenever I think of cancer (about a million times a day?). I almost feel that it is something the oncologists throw out there....Is there a trick better than the famous one foot in front of the other?
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Every time I think I'm getting a grip, one doctor or another seems to feel the need to remind me that I have "late stage cancer" as in "You can't use that treatment, you have late stage cancer."
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I know. Now that I am done with the chemo and radiation, there is just the hormone treatment left (and the remainder of the Herceptin). I find myself looking for reassurance. Desperately. It is hard to find in the Dr's office. Not that they are unkind. Just that they see some many cancer patients, they don't have time for handholding, I guess. Friends and family can only do so much. They say I look 'good'. Time to move on, right?
Take care.
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Hey Eval!! I understand how you feel. I'm 38 and 2 yrs pre mammogram, and never expected the words breast cancer to come out by doctor's mouth.! I had a single mastectomy, after it was expected for me to have a lumpectomy I'm a stage 3b with 5 out of 24 nodes positive. From what I've heard, the chances of it coming back in other breast is rare. A re-ocurrence tends to come back in same breast that was first affected.
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YATCOMW, I read one of your posts from back in February. It sure lifted my spirits. Thanks for sharing your stories of sucess with us. I am trying so hard to get back to a somewhat 'normal' life. It is hard.
Thank you again,
Leslie
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Leslie...
When you are in the thick of it....which I was with my cancer....I remember asking my husband..."will I ever find peace again"...when all you ever think about is your mortality, your kids losing their mom, plans you had for the future, all the effort you put in getting your 401K where it is and would you now even be here to spend it! I swear I didn't buy new clothes for the first two years----not even new shoes!!!! I hear your voices and I remember exactly how you felt.
I'll say it again.... you will find the peace...it will come no matter how difficult that sounds now. You will get there and things will be at a new normal. I still get scared on tumor marker day or scan day but once those days are over and everything comes back fine....things settle back and cancer takes a back seat.
We are strong women. We have faith that guides us. We have each other. We will beat this.
Jacqueline
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I had my # 3 A/C two weeks ago, I am due for # 4 next week.
Chemo so far is easy for me, no side effects at all besides hair loss.
I still cry every day, the fear of recurrence is so strong. The treatment is easy, and I dont feel sick at all, I dont feel any cancer, my body feels great, but my mind is hurt, my security is lost, I feel having no more trust in my body, in my future.
Even when I see pictures of my daughter, I cry, I am so afraid to hurt them. I was always the healthy one in the family, never have been a day sick,NOW, I walk on the streets with my eyes on the floor. I used to walk with my head searching to meet people,-- NOW, I avoid any contact.
I dont feel comfortable when my 14 year old daughter brings friends home , I feel that they will have pity with my daughter. Before BC our home was filled with girls, NOW ,- the only pleasure I have is working in my garden, with no one to judge me. My DH is going now to all the School events, I dont feel going anymore, with my wig I look " sick" I dont want people to have that puppy look at me, poor her, poor mother of Emily...
I was told positive thinking will help in preventing recurrence, but I dont really believe in this, though I guess I have no choice. I dont know WHY I got my BC, I do have an idea, and think that to much milk and meat products plus stress and social smoking triggert perhaps my cancer. NOW, I try all the best I can to avoid recurrance, I am still in treatment, and I watch what I eat, do a lot of exercise, I am not overweight, and have always had a lot of energy. My life is great, my girls are super, my home lovely, my part time job fun, my husband great.
What else is there to do.........
Have hope and give so much love
Carol
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Carol, don't beat up on yourself over "why" you got breast cancer (though I'm sure we all do this from time to time). I don't eat much meat; rarely drink milk; eat tons of fruit, vegetables, and fiber; take loads of supplements daily; never smoked; drink alcohol lightly; have been involved in heavy-duty athletics all of my life; am a low stress individual; had mammograms yearly; and, for goodness sake, I've been cooking out of the Doctors' Anti-Breast Cancer Diet cookbook for the past 20+ years and I still got bc! I kid you not!
From my own experience and from what other ladies on this board have shared, chemo seems to be the worst time for looking on the dark side. I don't know if it's the chemicals, the steroids, the side effects, or just that it falls X number of weeks after diagnosis, but it seems to be the time when the Specter of Reoccurence rears its nasty head and gives us the devil. That sure happened to me. My best friend had to pry me off the ceiling nearly every morning for four months. But here's the good news...it does get better. You come to grips with it. Sure, I think about reoccurences from time to time, but I don't dwell on it, just like I don't dwell on the possibility of a serious car wreck, having a brain aneurism, getting bit by a rattlesnake, etc. Keep your chin up...you'll get there!
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Thanks Celtric_Spirit,
I know I will get there, but for how long is my question.
How long ????
I need to make plans again, need to have hope that I will see my grand-children grow-up, need to see a future where I can live just without thinking about BC.
I am tiried of people saying you have to take a day by day, NO, I will take my life day by day, I always did, but I need to see myself here on earth with my girls happy and laughing untill they will get me into a nursing home.
Carol
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Carol....
I think it will be interesting to hear what others say..how long? I think it took me 2 1/2 years...before I didn't think of cancer every second. I knew there was a high risk of reoccurence in the first 2-3 years so I think I was terrified. Every month I could erase my dry erase calendar on the frig and put up another month of school and work activities was a notch in my belt.
It is just hard. It is scary. I looked for every success story I could find a put them where I could see them every day. I told my kids that laughing made cancer cells die and they needed to help me kill them. I tried to keep myself very busy with work and with kid's activities.
I think mostly I wanted my children to see that everything was the same it always was....that although I had no hair...that everything else was as it always was. I did this for them. I did not want them to think about cancer or worry. I had enough of that for everyone!
You will get there with more time on your side. In the meantime....try not to let cancer win. These are the best times with your girls. Easier said...but don't let cancer take a single moment of that time with them away from you.
We're here for you every step of the way.
Jacqueline
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Wow, these are some great inspiring stories, and as you say, we really need to concentrate on all the success stories out there, not on those that aren't so lucky. It is hard, I get really scared so often, and then other days I absolutely know in my heart that things will work out. My Onc keeps telling me that we are doing everything we can, I intend to do everything I can beyond what we am doing medically (exercise, diet, positive thinking) and then you just have to hope it is enough.
My Onc also really stresses how it is very important to be positive, I think it helps. I was quite down a few weeks ago and got a referral to a Oncology Psyciatrist - Carol, you might want to ask if there is someone you can talk too. I think we need all the help we can get.
I also was telling my Onc I couldn't stop thinking about dying - she sort of laughed a bit and said "well, you aren't dying" and it gave me a bit of a wake up call - right now, I aren't. We don't know what the future holds for us (nobody does, BC or not) and I am throwing away today worrying about what may or may not be in my future. This is not an easy road to walk, and not one any of us have chosen, yet all we can do is make the best of the situation we have found ourselves in.
To you amazing women approaching your 5 year mark, thank you for still coming back to show us that there is a future, and a happy one at that.
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I think the fear lives strong is all of us - especially the ladies that are presently going through treatment or just finished. That is what we have lived since d/x, doctors appts., chemo, rads, scans, follow ups, loosing our hair, loosing our breast(s). Nothing of this is easy - for any of us. I live in fear everyday, but I am staying positive that I will not have a reoccurance. I have a 13 year old son - I stay strong for him. We were close before, but this experience has brought us and my husband even closer. I have to believe that I am doing what I can to prevent a reoccurance. I am eating a lot healthier than I was prior to my d/x. I am now walking 7K a day! Something that I haven't done since my teens! I can sometimes cry at the drop of a hat. I think we all should have someone to talk to, someone who either can help us through our dark moments, someone who has been through it all and understands what we are going through. This isn't easy, but it is something that we all have to do to live! And believe me, I have a lot of living to do!!
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So Sherri, are you planning anything special for the 11th? It is quite the milestone!
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Well said.............
My onc is sooooooo rational, good scientist but a poor human.
I wish he would have a smart thing to tell me........
Carol
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Today is the 2 year anniversary of the dreaded "it is cancer" statement for me. I have been NED since Aug. 4 '07 (as far as I know). Because I had a mediastinal node that lit up on the PET scan I was given a very poor prognosis. The first onc I went to was a big hospital Dr. where I thought I would get the most advanced care. He looked at me like I was already a dead woman! I left him after 2 visits and went to my local onc.
On my first visit with him I remember sitting on the exam table (husband holding one hand, nurse holding the other) and just bawling my eyes out as he went through all my stats and gave me all the "this is unfavorable for you, this is unfavorable as well". Through all my crying he never broke stride in giving me my diagnosis. But when he was done, he took one of my hands, looked me in the eye and in his broken English (he is Indian), he said "Three things for you to remember right now. First, you keep your faith in your family, second you keep your faith in God, and Third - most important - you keep your faith in yourself." I still get the goosebumps remembering that day and how special those words were to me. I have never looked back and I feel like I have a truly special Dr. in my corner!
BTW.... I am having a PET in 3 weeks and if all is still clear I will be looking to have a double mastectomy. Not recommended for a Stage IV patient but I've decided for myself (and my special Onc. is backing me all the way) that I want to have more control over my health. It may still come back but at least I won't have to say "what if" or "why didn't I do everything I could".
My advice is to always believe in yourself and have confidence in your strength!
Anita
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Anita - that is really inspiring! What a compassionate doctor. So often it is important to remember it is not just all science.
I really think you are right when you say you have to do everything you can, so you can't look back with regret. I would hate to look back and think "if only..." Good luck with your Surgery, and heres to remaining NED!
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Jacqueline, thanks again for the inspiring words. It means the world to us 'newer' gals to hear from women who are further out and getting on with their lives. It seems I get a day of not obsessing and then something throws me right back in. I'll be a year out in May. I will say I am looking forward to this summer more than any other. Last year at this time I was heading towards the biggest scare of my life. I had my first chemo June 2 and my daughter's grad party was June 6th. It was all so overwhelming. It does seem though, when I look back, that while being treated there was a sense of security from all the meds, and medical staff. Once treatment wa over and I was left alone............. that's when my fear really started.
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I'll share what my oncologist and Bs told me as I think it's pretty reassuring. I asked them about getting a prophylactic mastectomy on the other side because I NEVER want to go through chemo again. They both told me that with chemo, radiation and estrogen blockers, the chances of recurrence are so small that they would never bring up a prophylactic with a patient anymore. This is EVEN THOUGH I was diagnosed with ILC which is notorious for showing up in the other breast.
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I'm at 3 1/2 years and most of the time I'm OK . I find myself worrying more the closer I get to 5 years. I can remember asking my onc about my prognosis and the face he made before he changed the subject. It's been good to read through these posts and be reminded that we aren't statistics.
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bbmom - and aren't you thrilled to be showing him how wrong he was! Well done, and thanks for sharing your great story
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you spoke about your radiologist saying prognosis would not be good and then another post mentioned her negative oncologist.......I don't believe a doctor should give a patient false hope and I like it when my oncologist is up front with me and tells me what it going on without sugar coating it, BUT whatever happened to bedside manner and positive attitude. I like to think there is always hope and people tell me the reason I have done so well is that I have not let my diagnosis get me down.......which I am not bragging about I just figured there were two ways to do this, I could go sit in a corner and cry and feel sorry for myself or I could carry on and try to live as normal of a life as possible. When my cancer recurred 8 yrs after my initial diagnosis and I was told I was Stage lV, I went to the library and stayed for several hours reading just to find out what it meant....the statistics were so depressing that I immediately went from there to Walgreens where I purchased a very large box of milkduds and ate them alll so I not only felt depressed, I felt sick. That was 11 years ago and I am still here, still working and for the most part doing things as I always did (can't do everything I used to do, but aging has more to do with that than cancer). You can't dwell on what might happen.....just because the possibility of the cancer reoccuring is there, does not necessarily mean it will happen. Oh, I know the fear of it is always there......like every time I have a scan or a new ache, I find myself thinking, Is it the cancer? Has it moved somewhere else?, is it getting larger? It's normal to think that way, but just because it could happen, does not mean it will. Think positive, live each day to its fullest and don't worry about what if. Easier said than done, I know, but as time passes you will find you think about it less and less and when and if it does happen, you will deal with it then. They come out with new treatments every year and some of the ones they used on me, were not even in existence when I was first diagnosed. Hope springs eternal. RIght now I am doing avastin/ abraxane and we won't know if it is working until I have my scans in a few weeks, but I am not yet ready to throw in the towel.
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I agree that the "think positive" credo does not have any effect on the cancer, but it does have an effect on your life. How you live the rest of your life is the most important thing, as we will all die eventually. We've been given a slap in the face...the wake-up call that many people never get. We should be turning our lives into more meaningful experiences, not shutting down and tuning out.
There are people out there that will be dying years before us...some will die in the next few hours...and they're not aware of what life has to offer, or what they should have done with theirs. Death will come to them suddenly through accidents or crimes. And in the last few seconds, they will probably have a fleeting thought of regret for something they wish they had done.
Well, ladies, we have faced the same thoughts, but WE HAVE THE TIME TO DO SOMETHING ABOUT IT. We have time to take those regrets and eliminate them through our own actions. We can act on those wishes. Make plans now to do something you have always wanted to do. It doesn't have to be an expensive trip or purchase...it can be as simple as getting a pet or joining a club or learning a new language.
That's how we make the rest of our lives meaningful.
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Celtic Spirit mentioned that it seemed that chemo was the darkest time for most. My chemo was sooooo hard on me that I thought I was going to die at times! But emotionally, it was the radiation that pushed me over the edge. I don't know why, as I surely felt better physically. I had horrible burns, etc., but not that "sick" feeling that I had during chemo. I think I cried for the first time during radiation, and now I feel like I'm not coming out of that dark hole at all. It's been two weeks since radiation ended and I'm still down on the bottom!!!! Don't know why, can't put a finger on it, no specific fears, etc. Maybe it's all still the effects of radiation, I don't know!
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I was just told that my son is being deployed to Iraq. One of my first thoughts was, "what if I "progress and die while he is there. Will they let him come home for the funeral?" What a sick thought is that? I should probably hide all the calendars. My onc told me I had a 68% chance of reoccurrence within 2 years. Every time I flip the calendar, I think to myself, "15 months left," etc. Most days I'm positive and plan years down the road, but it's always in the back of my mind. Hopeully as years pass, I'll think about it less and less. Although he doesn't say it, I'm sure my husband is thinking that he's glad this treatment phase is over because now maybe we can talk about something other than cancer all the time.
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Hi! What an uplifting thread! This is my second go around. I had a Stage 1 last summer with reconstruction, when I had my healthy breast reduced to match my reconstructed breast Stage 3c was found. Nothing on mamos. MRI, or physical exam. I am a RN, who was diligent with care and fell thru the cracks! I am now half way thruTAC and will have rads this summer. Thanks for the positives tories! I have A 14yo DD that I want to see grow up! I am very positive, work exercise and have few SE. My onc and surgeon are very positive ! So that helps! Thanks, Dawn
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I think trying to look forward and keep positive helps. I remember words at the beginning of this last summer: My surgeon saying I would eventually die of something but not breast cancer (lets hope that's true!!), the oncology nurse saying this is a bump in the road but keep making plans, a fellow BC survivor a few years out saying if this was the worst illness she has to deal with she knows she handled it well. It is normal to worry when active treatments end but I've decided to take the attitude that I'll handle things that happen down the road if I need to. I don't want to waste the next years worrying about 'what if". I've also been amazed by the stage IV ladies on these boards that keep positive- they are an inspiration to me. For those who are finishing chemo or rads.....it takes time to start getting energy back. I'm amazed each month how much better I am than the month before. I finished bilat rads mid Feb. I'm thrilled the better weather is starting to come- I feel like I lost last summer with dx and surgery. I'm planning on enjoying things this year!
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I'm living with these fears, too! In fact, I've been having some pain on my right side, just below the ribcage, and wondering if it's my liver. Also have these headaches. . .????? How long do you wait before contacting the oncologist? I hate to be a whiner and complainer and run in there with ever little ache and pain! How do you know????
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Nelia,
I saw the thread topic and saw your post. I also had issues on my right side and was worried about my liver. I think we all worry about recurrance (hell, I know I do!) I think the standard is - wait 2 weeks and if it still bothers/hurts - call the doc.
By the way, my problem was my gallblader. Had it out 2 wks ago and am doing ok.
Gentle Hugs,
Trish
PS - I have no idea how the font got so huge!
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neilia could be gallbladder problems too...I had awful pain on the right just under my ribs and it turned out to be a diseased gallbladder...No stones it just quit working.....It wouldn't drain but 12% of its contents......Good luck to you....
And YES I still have the fear of recuurence even though mine was so small and it was caught early.... I worry also for my sister who was stage 2b or 3.......She is very small and hardly weighs anything anyway so I feel very protective of her....Even though we are 400 miles apart......
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Jane-M: Have faith that your son will be fine in Iraq and that God will lead both of you through this challenge. I'm grateful for his service and know that he is in good hands.
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