Cancer Survivors Network

PT scan on Friday .. anything have to do with mammo, testing, mri etc .. scares me. Plain and simple.

I am DCIS - high grade, invasive, Her2 positive and fight with the possiblity of cancer spreading elsewhere in my tired body. Normal thoughts, maybe .. but I refuse to give in FEAR .. time is our friend, FEAR is the enemy.

Outdoorgirl is speaking from the Bible when she states .. It's reality.

Stay strong and peaceful:

VickiSam

Thank you for this verse.I have it saved in my favorites.i want to remember it.(Pat).

but slowly as we survive each month, each year it my subside some, only to rear it's ugly head each 6 months for checkups and etc. I just try to think of other positive things and I know I will be fine for now. I love you all and wish all my sisters the sweetest dreams tonight.
Jackie

Re, how did you know you had a recurrence? I'd like to know what to look for.

Ohilly

Ohilly the first time a bump popped up overnight on my chest and of course I went nuts with fear. I had not been feeling well anyway, the second time for me it was the fact that I could not get well from small things like flu, cold, bladder infections and infections in my arm that has lymphedema. I just plain did not feel well, I felt exhausted all of the time. I knew this was not right and insisted and tests, it took awhile to convince the docs it was a prob. but eventually they listened. My body could not fight off the small colds and flu's while it was attempting to fight off cancer.

Hugs,

RE

Zahalene, same question I asked RE: How did you know you had a recurrence? I would like to know what to look for.

Ohilly

I did not have a recurrence in the true sense.
I had a new cancer in the other breast 1 1/2 years after the first one. I found them both by self exam.
The third diagnosis was a bone lesion which showed up on a chest x-ray at a regular check-up at the site of my first cancer. But it was also a separate tumor, not a recurrence of the original cancer on that side.

Question???
What was your original treatment? Lumpectomy or mastectomy?

in 1986, followed by 10 months of chemo.
Another rad mast in 1988 followed by 11 months of chemo and 5 weeks of rads. Then 7 yrs of Tamoxifen.
In 1996 oncoman decided to try to shrink bone lesion (in right rib cage) with megase (oral) and it worked! No further treatment required after 5 yrs on that med.
All stable since 2001.

Zahalene, thanks for the morning laugh!

Ohilly, to answer your question as to how did we know when it has spread. I was diagnosed in 1999, age 36, with invasive DCI, stage 1, no lymphnodes. Had chemo, rad. and on tamoxifen for 5 years. Then my back started to ache when I road a bike, thought it was the angle I was sitting, and then off and on my back ached in the upper, middle and lower areas. All random and would come and go. This went on for about 3 years. Thought it was arthritis, (my Mom has it) thought I strained it. My doctor never asked any questions directly about my health, just 'How's it going' types of questions. Never thought to tell him about my back. My doctor never had me have a bone scan, ct scan, pet scan or anything after my treatment was over. Then in February of 2008, after constant pain for 6 months, and being misdiagnosed by 2 doctors, they found it had spread to my spine. In 11 vertabrae.

So my suggestion to you is to pay attention to your body. Ask more questions. I have heard of some doctors doing bone, ct scans more often than mine. Take advantage of this. Mabey get one every year or two if you can.

But, by all means don't obsess about recurrance. Life is way to short!

Oh, and am I scared? Heck, yea. But fear doesn't run my life. Hope does.

and now......ZZZZZAAAAAHHHHH...........

I think that if we weren't scared at least a little, that we would be living in denial. And, that would be not only wrong, but, not smart. The main thing is to just not let it control or influence your continuing to live a great life. Keep it in mind inre to checking yourself and being aware of any changes, but, just don't obsess about it. Bc does change our lives forever, but, it doesn't have to be a bad thing.

Leeza

i agree. I will continue to be afraid also.

As Roosevelt said, "There is nothing to fear but fear itself". I think of a recurrence often, and immediately send myself to another place. I know that sounds really stupid, but the least amount of time I spend thinking about cancer, the more time I have to live my life to its fullest. I have decided that cancer is not going to be how I am defined, to the outside world, nor to myself. It took a while to master this art, but once I decided that I wasn't going to die today, I took the next day as an added blessing, and so on, and so on. Every day I wake up, I feel there is something that needs to be accomplished, or someone needs my help, or something equally as profound. However, this attitude has given me my life back. There are good days and bad days, but they are days. What more can you ask for. The fear is always lurking out there somewhere, but until it slaps me in the face, I am going to turn my back on it and dance a dance. Wishing all of you success in conquering the fear, and know that there is a little bit of it in all of us survivors. Hugs,

Judy

in a way,I feel like cancer has only made us stronger. Not everybody has to face the beast like we do. To me,it says something about us- that yes,we are scared of the unknown,but we are tough and won't back down to this awful disease!

Ofcourse we all are scared and think of a recurrence in the back of our minds. But, you can either choose to let it take over your life and live in fear, or, you can just let it pop in your mind every now and then, but, go on to live the best life you can possibly have. I choose the latter. :-) Like someone said, I have cancer, cancer does NOT have me!

Lex♥

I am still pretty scared. But, I think that is because this is all still so new and I am just starting rads. Once I finish rads and am done with my treatment, I am hoping that my fear will diminish. I am not fearful of rads, they are fine, just of a recurrence. But, I am still living my life to the fullest and I will continue until my last breath. Noone and nothing is stopping me!

Sue :)

I could not agree with you more.In a way we are lucky to find out how strong we can really be,kathy

I think being scared goes hand in hand with a diagnosis of bc. I don't think we can escape it. We just have to try and not let it ruin or run our lives.

Leeza

Ink, this is an amazing article. I wish it could be published in every magazine in every onco's office in the world, as well as a hundred and one other places where every cancer survivor and 'thriver' (LOVE that...wish I had thought of it) will see it.
I am a 23 year survivor. Had 3 dx over a span of 10 years. NED for about 7 years now. But due to the mental and emotional 'side effects' of cancer and divorce and a couple of other sucker-punches, I have had a hard time being a 'thriver' until recent years. That was primarily because, for various reasons, I did not avail myself of the help that was available for treating and dealing with these issues. Your 'self-talk' article is amazingly right on the money, but I would suggest that, for some of us, it is hard for us to believe what we say to ourselves. That is when things like counseling and well-prescribed medications can be a great help in getting us to the place where peace resides in our spirits, as you so aptly describe the fearless mind-set we all so desperately desire.
Once again, congratulations on a great contribution to our board.
God bless.

Oh, zahalene, kudos to you in your thriver-ship! You are my heroine! And I know what you mean...those sucker-punches in life can put us off keel in a hurry. When that happens, it's another time in our lives when we must get to work and get the help we need, so we can get back on track and back to thriving in our lives. You are a shining example of that, after many tough blows. You are proof that we can get through, that we can be even better than just ok...we can find perspective, let go of the pain and fears and live our lives with peace. I hope that many more here will read your story so that they may be inspired and encouraged by it, as I certainly am. I only pop in to read once in a while anymore, and sometimes, I see a post which I feel I need to respond to, in the hopes that someone may take away just one small thing, which may be helpful in some way. Keep up the GREAT work and keep on thriving!!!

Love, light & laughter,
Ink

This was very well written, Ink.

I have a long road ahead of me. I only just had my mastectomy and am going to be starting treatment very soon. I won't say that I don't have moments of fear and times when fear seems to take over me, but only for a short period of time. I have often told my children when they were younger and feared death that they can NOT 'live' life in fear of dying. There is no point to life if we live every day fearing losing it. We are put on this earth to live a good, happy & fulfilling life. I am one that truly believes that 'everything happens for a reason' and if my time has come, whether it be this time, next time or worrying about it does nothing to change it. Living life should be everyone's priority; living life in fear is not living!

Don't worry... be happy! Good song ;)

Marlene

Hi Marlene_K,

I so love your attitude. Hang onto it and trust in your belief system and continue to draw strength from it. Accept those fearful times as part of the process. It is clear that you are working to keep them in check and that is a huge accomplishment. I so agree with your statement that: "Living life in fear is not living". Fear can rob us of so much and we deserve better than that. You are way out front in your attitude and I find that so empowering. Hope you'll continue to share here often so that (particularly) our newly dx'd sisters may benefit from your words.

I'd like to recommend that when you have a few minutes, if you're interested in (what I think) is a truly empowering clip: go to YouTube.com and type in Cancer Crusade Survivor Movie. It's message is awesome and I hope you will enjoy it.

Warm (and gentle) hugs and I hope that you are feeling ok, post mastectomy, and that the surgery went very well. Hold on to that wonderful attitude and continue to draw strength from it in the coming months. The road can seem long, when we first begin and we feel every single bump along the way, but someone once said: "A journey of a thousand miles, begins with the first step". And you have that first step in this journey behind you already. So many of our sisters here will share and offer support whenever you need it. CSN was important for me during my treatment and I learned so very much from every single sister who shared so generously here. We laughed together, cried together, got angry together and the most important thing was that we hung in with each other...always. A good resource...and we cannot have too many good resources.

Love, light & laughter,
Ink

Wow Ink!

Sue:)

Thanks for the encouraging words and inspiration. I'm definately saving this one to my favorites so I can go back and re-read it throughout my treatment. I'm in the beginning stage with chemo to finish and then rads. I'm very optomistic and this definately puts things into perspective for me. Thanks, again!!

Hi, MyTurnNow,

Thank you for your kind comments. I am over-joyed if anything I shared of my experience was helpful.

I'm happy to know that you're feeling optimistic. That's so very important. (My path was surgery, chemo and then rads, so sounds like you have a similar tx plan) Keep the faith and remember to keep doing whatever things you enjoy that help you to relax, relieve stress and keep you focused. And in your sprare time, baby yourself. (I never really learned how to "baby myself" until I had bc)Remember to make time for smiles and, BTW, a good ole belly laugh is certainly not out of the question either. If one gets close enough, grab it! LOL

Big hugs and best wishes that tx will go very well. Soon, this will be part of your history and you can again focus on thriving. For now, try to relax into the treatments which lie ahead and put your energies into taking the absolute best care of yourself possible.

Love, light & laughter,
Ink

I cannot begin to tell you how much your words have spoken to me. I need help in being able to put them into practice, but you have no idea how much I needed to hear this ... thank you (through tears!)

May God help me live it out...
Much love,
d.h.

What Ink wrote was perfect! I am glad that it helped you Dawne!

Lex♥

You express a certain confidence and control over this disease that I am hopefull, with time I can also attain. However, all of these emotions are new and I am still processing them. I was just DX'd in July of 09, had a mastectomy a few weeks after and have chosen (in agreement with my oncologist), not to do chemo. I start Tamoxifen on Monday. I'm just so sick of all this cancer ($#@. I don't want to spend my days in a fog of worry, doubt and fear. I know I can come out of this. I am, inspite of everything, a highly hopeful person. But at the moment, the feelings are so new, so raw, that they catch me off guard and can send me into a tailspin very easily. I don't need anymore fear based feedback, I don't want to know how bad it can be. I want some hope, some clarity, some positivity, from an articulate, rational, long time survivor such as yourself. Thank you for this immensely helpful and encouraging prospective. I will keep your letter close, and on those days when the grief and doubt start to overtake me, your words will be the lifeline, the inspiration that I will reach for to pull myself out into the light.

I don't quite know what to say. I am very pleased if my words helped you in some way...But trust me, I have no control over cancer. The only thing I can have control over is myself. I can tell from your post that you are a determined lady and that is a very valuable asset. I completely understand the rawness of your emotions and that is
perfectly normal for where you currently are. That will change with time and conscious effort.

I think it is so sad to see people living in fear...expecting their cancers to return any minute and becoming panicked over every ache, pain, test or check up. I wanted to share
that we don't HAVE to deal with fears as we heal, if we give time and attention to our emotional well being. And I think that you are well on your way to effectively dealing with the issues and finding a perspective that is healthy and conducive to a wonderful life. You deserve no less. Keep that light within (yes I can sense it through your words) burning and keep pushing forward. You will be there sooner than you probably think!

Love, light & laughter,
Ink

your post until now,ink. I feel inspired and empowered-thanks!

TxLady,

I'd imagine that denial is probably a possible response to almost any situation which can arise in life. I honestly don't know. But as you said, perhaps it's just that you are different from most, regarding fears.

If you should be in denial, then those closest to you, who know you best, such as loved one's, family, close friends or your doctor's...they will likely become aware of it, and likely attempt to address it with you. If you disagree, then tell them so because you are certainly entitled to NOT be afraid. Your not being afraid at all...well, I think it's just the next best thing to sliced bread and you're in a phenomenal place. I wish no one ever had to cope with the kind of fears that most of us experience when we get a dx of cancer. Just because most of us do have fears, particularly at the outset, doesn't indicate that all of us "should" have them or necessarily will have them, in my humble opinion. Just take it one day at a time. The emotional side of cancer is something each of us must address in our own way, on our own terms. Nothing helps many of us do that, like talking about it with others who understand. As long as you feel that you're moving forward and taking good care of yourself, then you're doing ok!

This is a very good place for sharing and helping us to figure things out as we go because someone here has always been there and can share tips, ideas and suggestions. Your sharing your lack of fear is special and likely in the minority, so I'm happy that you put it out there. I think it can help others in knowing that if
they happen to also not be afraid, they know that someone else here understands it.
Feeling understood is important, particularly here at CSN. As an analogy: Just because 99% of us did not turn neon purple from treatment, doesn't mean that the majority doesn't want to hear about it from the 10% who did. We value our sisters here...neon purple, bald, sick as dogs, depressed, or just the hilarious clowns of the group. Doesn't matter.

Warm hugs and all good wishes! I know you will get back to those plans for '09, which you had to postpone. I hope all is going (or did go) well with treatment and that you're getting back to your life in the best of spirits.

Love, light & laughter,
Ink

I hope I did not make it sound like I'm mad at the world - I'm not. I generally tend to be a problem solver.....so cancer was just another "problem" that needed analysis and action. Hence, my comparison to appendicitis.

I realize the only thing I can control about this whole ordeal is how I handle living with cancer. And hopefully, I will do it with kindness and compassion for others, focusing on the wonderful people and things in my life, and remembering that, in spite of the disease, I've been pretty blessed in life.

Late night is the time of all boogiemen, isn't it? I have dealt with night fears since my diagnosis in Feb/09. My solution is to have guided imagery cds which fill my mind and ward off these useless fears. I am soon asleep and filled with hope. I can't feel the fear unless I focus on it so these tapes have been a real help. Book stores and Amazon have many to choose from. I use headsets so my hubby's sleep is undisturbed.

Roseann

I've heard this saying: "Every day is a gift; that's why we call it the PRESENT." xoxoxoxo Lynn

I will soon be a 4-year survivor, from the time of my dx, on Dec 13th.

It's a strange thing, but up until my husband and I went away at the end of the summer, the fear of cancer was everpresent in my mind. Even when the fear was latent, I knew it was there because it rose quickly to the forefront every time I felt something that I didn't think should be there.

I know my drs are watching carefully for anything that may concern them, but I'm keeping a watchful eye on my own body as well (just in case they overlook something). Yet, what I sense now is that, if cancer should raise its ugly head again, I will know that I can and I will deal with it. I did it once and I survived. I can do it again. If I survive it a second time, I will know that I still have something yet to accomplish here. If I don't, well, I know that something beautiful awaits me.

I had a spiritual awakening at the end of the summer (though prior to this, as many of you know, it was a summer of many challenges). I honestly don't know if it is this spiritual awakening, or whether it is my own internal resolve, but I do know that I have come to accept that cancer is a part of life. Perhaps, it is a combination of both.

Regardless, I do not fear what may never come to pass. For if I fear now, it is, for me, fear only for the sake of fear itself. If it returns, fear will not conquer it. Faith will not conquer, either. The only thing that will conquer it is the reality that it is still not my time. I will fight, if I can. I will survive, if it is meant to be. I will succumb to it, if that is my decision or cards that am dealt (cards that I choose to play or discard).

I no longer fear death, anymore than I fear the commute to my job on a cold icy winter morning on unplowed backroads. I do not welcome the trip, but I know that it will be there waiting for me regardless of what I want, or fear. I survived a near fatal car accident nearly 14 years ago, I have made this commute for nearly 12 years during some of the worse winters in Michigan's recent history, and I've survived cancer for nearly four.

For me, there is nothing gained by fear---except more fear.
dmc

I think I will always have the fear of it returning. It seems like it has for so many on here and with me being young, there is a lot of time for it to come back.

But, I am living my life to the fullest and will continue. I love my life, I love living it!

Angie

Thanks everyone!

I hope that you are feeling somewhat better now Kylez about your future and that by reading all of these comments, you know that you are not alone. We all get scared at times. Just don't let it run or ruin your life and future!

♥ Noel

Pat, I am so sorry. I wish I could write something to make you feel better. Just know that we are all in this together! I am praying for you!

Angie

I'm sorry-I know that it's not easy and especially the unknown. Before your next treatment you will have a better idea of what to expect. I know that that doesn't help you now,and I'm sorry,but there is a light at the end of the tunnel-it's just that you are just starting to go through the tunnel.
We love you and are here for you even if it's only cyber space!

Hi Susie! Yes, I am feeling better. I am sure that it will just take some time for me to really get away from the fear. I just finished rads and am considering tamoxifen. I kind of doubt that I will take it though. Too afraid of the side effects.

So many on here have been so kind to me in PM and in this thread that I hope you all know how very special and wonderful that you are!

Kylez ♥

Kylez, I am happy to read that you feel somewhat better. The fear is in all of us, we just have to not let it take over our lives. Live your life to the fullest!

Kristin ♥

My husband gets upset with me when I talk about my cancer. He popped off at me yesterday because I brought up to my Medical Oncologist what some of you gals have been going through in here, he said "You have to stop this, I'm tired of hearing these things" Just listen to your Dr, not those other woman. I was really internally pi&&ed at him for a bit, then i know he's been complaining about his knee, he probably has arthritis in it, and I'm sure it hurts, men aren't good with pain. Plus, he's had to take off time from work to take me to appointments, and now my surgery in 2 weeks. I told him, just get me settled in if it's a morning surgery and go to work for Pete's sake! I'll be too groggy to talk to him anyway when I come to, afterwards. ARRGH.

I told him hopefully, I can handle going to my RADs by myself.

my husband gets upset when I talk about cancer related things as well sometimes-I think sometimes he feels like I let it consume me. But he is as concerned about recurrence as I am,maybe more so! Every once in a while he will hear about something cancer related where he works-and if it's legit,he tells me about it when he gets home.Maybe your husband is afraid as well-so doesn't want to talk about it,I don't know...If I were you,I would have been pissed too!Yes,you need to listen to your doctor,but we have all been there or are doing that and perhaps your doctor has not!
And I know it takes a lot out of our hubbies to take us to appointments and such(mine took me to my chemo treatments and had to do half days at work to do so),but you would think that would be something that your husband would want to do!

I found that once my loved ones saw that I was getting better, physically, they were very anxious to move on and not talk about cancer related topics anymore. Meanwhile I am still scouring the internet researching, looking for signs of hope and dealing with the various issues that we all discuss on this site. Maybe its like OutdoorGirl said - they are afraid to bring it up anymore. Or maybe they just want to move on and get back to a normal life again. Meanwhile, we are still facing months and/or years of treatment and perhaps delayed emotional response to the trauma that we just went through, or about to go through (surgery, chemo, etc). Long after everyone else has gone back to their lives, we're still left holding the bag of emotions, responsibility for our health/treatment, as well as the process of moving forward in a hopeful, mostly fearless manner. Thank goodness for this site and the ability to read, share and encourage one another.

I found that once my loved ones saw that I was getting better, physically, they were very anxious to move on and not talk about cancer related topics anymore. Meanwhile I am still scouring the internet researching, looking for signs of hope and dealing with the various issues that we all discuss on this site. Maybe its like OutdoorGirl said - they are afraid to bring it up anymore. Or maybe they just want to move on and get back to a normal life again. Meanwhile, we are still facing months and/or years of treatment and perhaps delayed emotional response to the trauma that we just went through, or about to go through (surgery, chemo, etc). Long after everyone else has gone back to their lives, we're still left holding the bag of emotions, responsibility for our health/treatment, as well as the process of moving forward in a hopeful, mostly fearless manner. Thank goodness for this site and the ability to read, share and encourage one another.

Right now I am so busy with rads that I am not thinking that much about a recurrence or anything. This is keeping my mind occupied with the fact that I am fighting bc. And, that is good!

Sue :)

gmg86,
I am in a support group with Dr. Bernie Seigel who wrote, "Love, Medicine and Miracles" as well as many other books on living with cancer. He would say that you were exhibiting true survivor behavior. Good for you! All any of us have is today and it sounds like you are making the most of it.

Roseann

This has been such an interesting thread. I have read over and over what so many of you have posted. Believe it or not, it truly has helped me. So, I want to thank all of you for your sincere and honest words. I am still scared, but, you all have made me feel less scared.

And, a really big thanks to Patty ( outdoor girl)!

Thank you!

Kylez ♥

It was good to hear about the fear, and how you cope. I get my first chemo treatment tomorrow oct 6. My port is in place, and I'm going to take my faith in God with me as I start this next step in my treatment. I'm going to fix my hair tomorrow morning before I leave, knowing that I wont have to worry about fixing it in the very near future. I already purchased a wig and scarfs. I of course wonder how my body will react to these chemicals, but must do what I must do. Hope I have the energy to check in with CSN from time to time. No one understands as one who has or is going thru the process. I've also been told that no one's cancer is the same. How unique can we get. I welcome any prayers for strength to face this next challenge. :)

Wishing you good luck natly! This place is always open for you. Post as often as you need or want to. We all help each other thru this!

HUGS

I guess we will be about a week apart in our treatment as my chemo will be starting this week. I would love to stay in touch. I'm not great at operating this site, but I will add you as a friend. I will be on TAC; every 21 days for 6 cycles, and then radiation. You? Hopefully you'll find this post and we can become friends.

We can do it!! Marlene

Wishing you good luck Marlene with your chemo! We will all support and help you thru it!

♠♣ Susie ♠♣

I get a big thanks,huh!! Is that because I've always got something to say-or maybe I don't and I just think I do....? I don't know!Anyways,that's part of the reason that we're here,girlfriend,and you're welcome!!
Natly,I will be thinking of you and hoping that all goes well-and hopefully you will see that it's not as scary as you thought!

You got a great big thanks because of how you helped me Patty. Not only did you post on here, but, thru your pm's. I really appreciated them! What you said was very encouraging and reassuring. Thanks again Patty and everyone! And, good luck Natly.

Kylez ♥

Bc is so scary anymore. I read post after post of newbies on here and it is just so sad. And then, you read about all of the ones with the recurrences or another new cancer. I know I live everyday as if it is my last, but, the scary thoughts do still creep in. Why can't they cure this crap?

I'm scared because there is so much cancer we live with. I live everyday with my Bc, surgery, Tamoxifen and now more surgery. When will all the sickness end for everyone.

Please don't be scared. You are a true warrior for doing all that you can to fight bc. Don't let bc rob you of living your life. It is like someone wrote on here...

You have cancer...cancer does not have you!

Hope you feel more positive with each day!

Sue :)

I am much better. Reading what everyone posted made me feel less afraid and like, maybe, someday, I can put bc behind me and not think of it constantly. I am living my life, but, a bc recurrence still keeps sneaking in my mind too much. It seems like I have read of so many on here that it is hard to not think of it.

♥ Kylez ♥

especially when you read sites like this. But remember, people usually only post when they are in treatment or have had a recurrence. There are exceptions, but people who haven't had a recurrence do not generally come on after 20 years and say "hi, I am not going through a recurrence." Glad you're feeling better.

Mimi

for lizzie17

you're not alone!

Thanks Dawne for bumping this. It is good for all of us to know that we aren't alone.

HUGS

Maybe that'w what we should all request - a confirmation on this site for each year of nonrecurrence. That way, those of us in current treatment can see the number of survivors, which I would bet is a lot larger than those that have to "go to war" again.

Hi Vicki! Just saying welcome and good luck. I bounce from still being scared to maybe for a second forgetting about bc. But, it is hard to not be scared. I think that maybe when we are years out of treatment, it will get easier. It seems to for the ones on here that have been done for years. Good luck!

♥ Kylez ♥