Consumed with fear of recurrence

chekmark · 04-16-2011, 08:25 AM

Hello her2 sisters. I am fairly new and just keep reading and readng and see so much positive feedback yet I am still so consumed with recurrence. I was diagnosed Sept 10 with stage 1 grade 3 er/pr+ her2+. No lymph nodes involved. My oncologist said that my her2 was dormant and had not yet begun to do its job so I take that as a good thing but still constantly worry, worry, worry. I had a mastectomy and 6 rounds of tch and will finish with herceptin in Nov. 11 and just started on femara. I read some many discrepancies with recur rates that I just do not know what to believe.Any input would be greatly appreciated. I know that you are either 0% or 100% and no one can predict our outcome. I read here that herceptin does not work for everyone. How do I know that it is working? I just had my 6 month follow up and so far so good. Thank the lord. I get stronger every day and it has gotten somewhat better. Thankful for a very loving supportive husband who encouraged me to go on when I thought that I could not put one foot in front of the other. Self esteem has been another problem for me since my oncologist does not want me to have reconstruction until I am done with herceptin and no hair. Just so much to deal with. Thank you for letting me get all of this off my chest. Blessing to you all. Darlene

AlaskaAngel · 04-16-2011, 09:39 AM

Good morning, chekmark. Fear knows no logic. I have never been worried about recurrence, but am pretty phobic about chemotherapy. I just want to answer you because the history you posted so far is the same as mine, and maybe it will help for you to see my signature information. I have had no recurrence.

AlaskaAngel

Becky · 04-16-2011, 09:49 AM

Dear Darlene

All your fears are very normal for the timeframe you are in. Way back then, having had bc was the first thing I thought of when I woke up and the last thing I thought of before I went to bed. I thought how unfair that was that this was the way my life was going to be everyday. But that changes - it really does. I think we all go through this experience and come out of it in some kind of familar pattern. Of course you think of recurrence all the time. I did too. However, you will see as time goes on, this fear also diminshes. Although I still come on this board almost everyday, I really don't think about bc and recurrence continuously. I actually don't even think about recurrence at all even though I know it can still happen, even almost 7 years out. The odds are in your favor every moment that goes by.

The biggest thing I want to tell you is that what you are feeling is 100% normal. I also want to tell you that you will feel this way for awhile and then suddenly, you will realize that everything is better. And it does get better and your hair will come back and your strength will improve and treatment will be over. And your new normal will change to just normal. I promise!

Elizabethtx · 04-16-2011, 01:15 PM

Focus on your strength and happiness. It is so easy to get caught up in the fear. Each day we must wake up and choose to live this day we have been given well. Your prognosis is excellent based on your stats and as you can see many others are doing well who started in a worse place. Thank goodness for research and the wonderful people who participate in trials! May you blessed for many years to come.

BonnieR · 04-16-2011, 01:32 PM

Dear Darlene, I can relate to feeling "consumed with fear" but Becky really spoke to that. Believe it or not, you will not always feel this way! You and I have alot of similarities (see my signature) and our outlook is good. Try to find the positive, hopeful things in life to focus on. Maybe put your fears into a journal and then close it for the day..Is there a support group you can attend? Mostly, keep the faith.

caya · 04-16-2011, 01:51 PM

Hi Darlene,

My stats are almost identical to yours - I'm triple +, stage 1, grade 2 - no lymph nodes. I had a mastectomy, chemo, the year of Herceptin, Tamoxifen , now on Femara. I understand your fears, but as the others have said, time is a great healer.

My. onc. told me that he considers me well over 90% "cured" - he used that word cured. And of course the farther out you get, the chance of recurrence lessens. Nothing is 100% for sure, but with your stats, and treatment, your chance of recurrence is probably very small. So try to focus on that, I know it's hard in the beginning (been there, done that), but you will see that the fear does diminish.

all the best
caya

tricia keegan · 04-16-2011, 02:21 PM

Hi Darlene,

I can't really add much to the wonderful advice you've already had, except to say this does get easier to deal with and you'll gain more confidence with time.
Recurrance is always there of course, but I'm almost six years out now (herceptin had just been approved for early stage when I was dx) and so far so good....the fear does'nt rule me anymore.
I hope you take heart from the many survivors here, some of whom were less fortunate than you are and had positive nodes and still doing okay, I think it's true that we all write the new chapter for her2+ bc and only time will tell the full story. Don't wait for recurrance, just enjoy your life now and know you're cancer free and make every day count

chekmark · 04-16-2011, 03:08 PM

Thank you everyone for the great advice. Becky I have been following alot of your responses and was real glad to hear from you. Glad to hear form each and everyone of you. I will try to stay positive and leave it in god's hands. I hope to be here years to come and to be giving someone the same advice you all gave me. Thank you again. I feel so much better.

sassy · 04-16-2011, 05:59 PM

Hey Darlene,

I'm a triple positive too, but with 5/14 positive nodes and I'm still here kicking 6 years later.

Cancer will always be a part of your life, but it will recede into the back ground more and more as time goes on.

I once described it to a friend as having a box that I keep the cancer in. Sometimes I need to open the box and take it out and look at it, sometimes I need to just open the lid and peek in, but more and more I can just leave it in the box and know that I can deal with the box just being something that was in my life.

Keep the faith.

Jean · 04-16-2011, 06:19 PM

Darlene,
There are so many levels of feelings that come with the dx. of bc. As Becky said what your are feeling at this time is so normal. Time will help you adjust to feel more comfortable again. In the meantime maybe what may be of help is remembering that you have done all that you could which is a big positive step. You removed your cancer...you had TCH which has shown in the trials to be very effective..you are taking Femara which the trials have had great results. I find by stacking all the positives it helps ward off the negative worry of recurrence. Your confidence will return but in the meantime remember all the positive approaches you have taken and plus add diet, exercise and you are on top of your health having check ups etc.

You are at the halfway mark of finishing treatment.
Sending you best wishes...and when you need to just reach out - you are never alone many here understand.

Kind Regards,
jean

Mary Jo · 04-16-2011, 07:25 PM

Hi Darlene,

I, too, will echo what some of the others have shared with you. You are NORMAL...NORMAL...NORMAL (isn't that good to know?

) I would say the first 2 years all I thought about was recurrence. As Becky said, "from the time I got up till I went to bed." I had a new cancer recurrence almost daily....somewhere else (wherever the new ache was) and told my husband of this each day when he returned from work...(oh the poor guy). Trust me....trust the others who have "spoken" to you...this most definitely will pass as time goes on. It is too bad we have to live like this for those first couple years (I believe most of us do) but unfortunately, it is part of this journey. The worst part, I might add. Fear and all that goes with it literally robs you (us) of the joy we whould be dealing with each day we are alive.

I am just about 6 years out now (June 2011) and I can honestly tell you that I never think about a recurrence anymore. Also, to be totally honest with you, I hardly can remember having had the cancer, the 2 mastectomies, the chemo, radiation, herceptin and delayed reconstruction. Honestly truly. It seems as if it all happened to someone else and I only have a vague memory of it.

You will get their, I promise. It's all too new yet. One day at a time. Try to tell yourself each day "TODAY, I do not have cancer and I will live my life cancer free today." It helps, trust me. I had to tell myself that for quite some time.

Love and peace..........

Mary Jo

BonnieR · 04-16-2011, 09:58 PM

Mary Jo, you are right! Cancer has receeded in my memory. Gradually, one day at a time. If I didn't volunteer as a Navigator for new patients at the cancer center, I would not think about it at all. It's like it happened to someone else. So, sometimes a poor memory is a GOOD thing!
Keep the faith Darlene. As Jean said, you have done all the work. Now appreciate the results.

Paty · 04-17-2011, 01:05 PM

Dear Darlene,

I can understand the fear that you are going through as this is common to many of us who fight this terrible disease. I have been NED for almost five years after chemo, radiation and Herceptin. Even with a recurrence, there is still a lot to fight with. Have faith and live fully. Sending you hugs and best wishes. You will find a new normal life again.

Paty

v-ness · 04-17-2011, 04:51 PM

hi darlene, i had the same diagnosis as you except my tumor was a grade 2 and i had a lumpectomy instead of a mastectomy. had the TCH too and finished Herceptin in october. i was like a yo-yo when it came to fear of recurrence. even though my onco told me last january that i was "cancer free" part of me thought "how do you really know?" then i figured it's a crap shoot, and you can choose to either be positive and hopeful or be negative and worry yourself to death over something out of your hands in the first place. if you're positive, you sure enjoy life a lot more in the meantime, even if cancer did recur. i also read the book "After Breast Cancer" by musa mayer and that helped me think about the chances of recurrence differently. when i got my port out in october i was jubilant. i was DONE with cancer, yahoo. and it really did go to the back of my mind. i went to a mammogram without a worry, and i am honest about this. i'm not trying to sound like i was tough, i really went there feeling confident. and i went to my MRI in march feeling the same way. when they said i had a couple spots in my opposite breast "that were probably a whole lotta nothing, but i should have a biopsy to be sure" i was thunderstruck. chances were that it really was nothing, but of course i was scared. at the same time, though, i felt that i had that first treatment under my belt. if it was cancer, i was savvy now and i'd attack it twice as hard and it wasn't going to get me. thank god it turned out to be a cluster of old inflammed cysts which did not resemble cysts on the MRI or US. so now i am back to my former confidence again. i know how lucky i was finding it so early. it feels much better to concentrate on the good things about early stage and the kind of treatment we've had and also know that there is a lot more out there to help us should something bad happen. remember that kennedy quote about nothing to fear but fear itself? fear will crush you and rob you of happiness and joy of the day you are living. someday it will recede and you can help push it back. and when you need more help, there's always this place here.

valerie

chekmark · 04-18-2011, 04:23 AM

Everyone has given me great advise and I will try to think more positively. Oddly enough 2 days after posting this thread a ex co worker of mine only 29 yrs old was diagnosised with colon cancer. She has a 2 year old son. Don't have alot of details yet since she has not had her surgery yet but I found myself at the other end. I was the one giving the support and the advise and it felt good. I did not feel scared any more. I felt strong for her most likely because I know exactly how she is feeling right now. The fear, the unknown etc. Time to stop feeling sorry for myself and start moving on. I managed to work thru all my treatment and surgeries and keep getting stronger every day. Now I am going to help her do the same. Thanks everyone for all the great advise. Sometimes I wonder if I had an unneccessary mastectomy but to late to dwell on that. Life is a precious gift. It really helped to hear from others that have been there done that and can relate. So many people tell me that they know what I am going thru but unless you have been thru it or have watched someone go thru it no one really knows.You all do. As my friends life crumbled that day she heard those words you have cancer everyone around us was going on with there lives as if there was not a care in the world. Strange how we see things so differently after have been thru something such as cancer. Thanks everyone for listening to me and for being there for me. God bless you all. Darlene

Hopeful · 04-18-2011, 06:30 AM

Hi Darlene,

In 2008, I attended a one-day seminar for cancer survivors of all kinds of cancer at the hospital where I received my radiation treatment. One of the sessions I attended was on exactly this topic, fear of recurrence, and was run by two oncology nurses. They presented information from some studies that were done, as well as their own experience. They said that the fear of recurrence reduces dramatically once the survivor has achieved 24 months of survival post-diagnosis. Apparently, this is the point where the brain stops pushing this to the forefront all the time. They said the stats were backed up by their own clinical experience with patients. So, there is even more evidence than the experiences of the community here to reassure you.

Best of luck to you,

Hopeful

sdstarfish · 04-18-2011, 07:10 AM

Hi, Darlene;
I just know that some day you will be a great person to be encouraging someone else that they, too, will get through this process. You are beautiful inside and out!
Lisa
www.pinkkitchen.info

suzan w · 04-22-2011, 04:27 PM

Hey, Darlene...great advice precedes my post so I will add my 2 cents worth! For the first 2 years post diagnosis I was consumed by fear. Every little twinge sent me to the ER. Then I would think less and less about cancer and more and more about how grateful I am. Almost 6 years out I find it has receded from a constant background thought to a passing daily thought! Time will give you more and more strength, you can count on it!!! XO Suzan