Anyone have trouble believing they'll survive?
Hi,
I start neoadjuvant chemo tomorrow. I have 4 nodes showing on PET/CT scan, confirmed malignant by FNA biopsy, and a 2-3 cm palpable lump in the armpit in addition to the 3.5 cm lump in the breast. My MO said it's stage II or III. I believe I may never know exact staging and number of nodes since I'm doing neoadjuvant chemo. She said I'd have 50% maybe 60% chance of 10 year survival after chemo, surgery, radiation, and hormone therapy for 5-10 years.
Ever since I got the biopsy result, I've kinda felt like I'm dying. It's hard to describe, but it's like it takes too much energy to hope for the best. I had a little bit of hope the biopsy would be benign, and it wasn't. I had an even smaller bit of hope the 2nd biopsy would be benign, and it wasn't. I just don't want to hope anymore, but I have to, right? I have to hope that the initial treatment will extend my life enough to be worth doing, and I have to hope that life will be worth living during the treatment. I'm just having a hard time with that right now!
Did anyone get through periods of hopelessness?
Comments
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Ann- I think everyone here has felt that hopelessness. Some of us continue to feel it on and off. You are right to feel that way, breast cancer is a serious and scary diagnosis. But I will say that once you feel like you are doing something to get better, YOU will feel better. I went into surgery thinking I was stage 2 and came out stage 3, thanks to my 4 positive nodes (also palpable). Terrifying at first, but then I learned to accept it.You are right to have HOPE!
Treatments are advancing at such a rapid pace, counting your survival years just doesn't make sense anymore. And everyone's cancer is different. I still struggle with whether I will be here in five years or not, but then I once again make peace with myself and carry on.
We are here for you! We have all been through or are going through this! Do you have a good support system? Family, neighbors, church, etc.? They will carry you through the tough times. If you don't, let us help where we can.
Thinking the best for you!
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Ann,
Does your MO have a crystal ball? Unless she does, there is NO way she can predict with certainty that you have a 50/50 chance. I think it's criminal and wrong that she even said that. She's basing her claim on stats gathered from millions of others, but the problem with that is that it doesn't take into account your own genetic makeup, your lifestyle, how you eat, environmental influences, activity levels and the like.
Reading your post about what your MO told you kind of p*ssed me off. And stage II, grade III isn't a death sentence. I'm pretty sure there are plenty of women on BCO that are long-term survivors proving that right now.
Hang in there. Believe that the treatment you are getting will save you and give you a normal lifespan. it's hard, I know. I finished tx a little over a month ago, and I still get waves of fear that wash over me, but then I just get defiant and go to the gym or another bikram class or do a long hike, and I feel better knowing that I'm still, post-tx, doing everything I can to flip the big old bird at cancer.
You're still new to your dx, so understand that we've all felt that way and it doesn't mean that you WILL die from this.
XO
Claire in AZ
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MaxineO, I have my fiance and a handful of friends in town including a next door neighbor, and family that's back east. Everyone has offered to help but I don't know what to ask of them. I'm covered for practical stuff like drivers to appointments. I don't know how to get help at times I just want to spend the day in bed crying. I'm not sure whether to give into such impulses or fight them. Every time I let myself collapse it makes me feel so weak and distresses others so much I swear I won't do it again.
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Claire, I could use some of your attitude right now!
Don't be mad at my MO-- she didn't just drop that number on me, I asked for my prognosis statistics. I know some folks don't want to know but I did.
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Ditto - I have a friend with similar BC and is now 8 years out and doing VERY WELL. You are at the start of your treatments. This is the first step to getting rid of the cancer and followup treatment regimens. Hormone receptor positive gives you more treatment coverage for the future regarding Tamox or AIs. One day at a time is hard - now you are dealing with shock and stress of being dx. (You are normal to have that reaction!)
Regarding help - Maybe some grocery shopping on days you don't feel and need to rest.
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cp418, thank you, I'm gonna repeat that to myself as needed "this is the first step to getting rid of the cancer"
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Ann- You are so early in your diagnosis. It is okay to cry and cry and cry! It's terrible news you've received. You will get through the crying in time and then you will work toward getting better. And you will still cry from time to time, just not as much.
It's hard to figure out what you need people to do for you. I had a few friends who were breast cancer survivors, so they kind of knew what I would need and arranged for bringing in meals a couple of days a week during chemo and stuff like that (I have two kids). If you let people around you know what you are going through, many will come through in amazing ways (others will disappoint you), but it's up to you how much you want to share.
I'm with Claire, your MO has no business giving your chances of survival. I will repeat: treatments are advancing rapidly such that the statistics you see just don't apply. You have some good markers and will be a good candidate for hormone treatment. What type of chemo are you having?
Hang in there. You will get through the hopelessness. It's terrible and awful and depressing and sickening. And you are reacting as all of us have. When you get going on treatment, you will get your fighting spirit back up. And we will be here to help you fight!
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Maxine, I am having the AC-T, so it's AC every 3 weeks 4 times, then 12 weekly Taxol.
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Hi, Ann. I know exactly how you are feeling. I was sure I had only months to live when I was diagnosed and I was scared to death. I cried alot too and didn't start feeling better until I met with the surgeon. His first words to me were "your're going to be fine, Hon. You have a garden variety breast cancer". I am sure he wasn't minimizing my situation; he just wanted to give me hope. After that, each step was a little easier. I had never been sick and never ad surgery of any kind so I was really a basket case!
I only wish I had found these boards at the beginning of my journey. These ladies are so smart and helpful. Anytime you have a question or need reassurance we will be here for you. I am sending hugs and well wishes.
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Lee64, I've never been sick much either, just some nagging annoyances. Figured I'd be long-lived like so many in my family. Seems the serious health problems in the family are related to smoking or obesity and I don't have those issues.
Thanks for the hugs & well wishes
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Feeling 100% better today. My mental stuff seems to cycle. If I have bad morning, I'll have a good afternoon and vice versa. First chemo infusion went well, and I finally told people in my wider circle about my dx. The support from that has been uplifting. Thanks for listening to me on my dark day!
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I have been there. my doc said the same thing to me.
Statistics group everyone in same group . Say someone in our group gets reoccurrance and they smoked and didnt exercise.I read somewhere that exercise can cut reaccurance rate a lot . -
Ann, you will cycle mentally a lot, with each new stage of treatment, each doctor's visit, or sometimes the smallest thing. I now can go weeks without crying but something totally unexpected will set me off. My MO has been so positive and just wants to get me better. That has helped me fight the feelings of "what if I don't beat this", although they still creep into my head a lot.
I am glad to hear your first chemo infusion went well. In looking at your profile, it looks like you and are are very similar in our DX and method of treatments; I'm just a little bit ahead of you.
I had a hard time making my DX public but when I did I found out that people were amazing in so many ways. You need the support and I find that people need to find ways to help to so I have learned to let them help.
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I remember well that feeling of keeping my hopes up that each biopsy would turn out okay and the devastating feeling when it did not. I had the core needle biopsy of the tumor and then the FNA like you. I'm glad that I was a person who had high hopes rather than one who did not, but I think if I'd had more experience with the process or any inkling or info on bc whatsoever, I would have known more of what to expect. I try not to beat myself up over that. For me, I think my trust in the place I was being treated and how I felt that I was getting high quality and compassionate treatment helped me to keep going on with hope more than anything. I hope it will be the same for you. IMO, the place of treatment can make all of the difference in the world.
My MO didn't and actually will never address my questions about stats and probability of living XX number of years. I get an answer, but realize that it's not really a direct answer which sometimes upsets me, but it seems from what the other women say above, that is more common than not. I was not prepared by my then-MO (she left and I got moved to the head of the dept) for a change from Stage II to Stage III after surgery. I also had neo-adjuvant chemo like you are going to.
My experience with people in my life during this challenge is that I would advise to be as strong as you can about what you do and don't want in terms of support. Some people will come into your life only because of the cancer and some will leave unfortunately. Some people want to do things out of their own needs related to fears and past experiences around cancer, rather than your needs. In hindsight, I should have set more boundaries, but it was all okay in the end. Also I could have been much better prepared and set better boundaries about how to respond to the never-ending questions. I'm often ill-prepared for types of questions that I would never ask someone myself, but believe me, people will ask about prognosis and things like that as if it was their business.
When I have a hard time keeping up my hope, I usually focus on the people in my life that I want to stay alive for. Believe me, I have my days where I believe my time is limited. I also think about how well I'm coming through treatment, just as you are having handled your first treatment so well. Sometimes, it's just hard, but as you are finding, there will be some easier times so just know that they are coming.
Hugs to you. -
Ann, I was one who thought that my diagnosis was a death sentence. I started trying to "put my affairs" in order. I started giving my clothes away. My husband insisted that I needed a new car and I didn't want to "waste" the money. At some point, I became more a little more positive and decided that if i had 5 years or 10 years, I was going to make them good ones. I'm now feel that it's possible that I'll live longer. I still ride the roller coaster between periods of positivity and negativity. However, I will say that I no longer fall asleep at night thinking about cancer and it isn't my first thought each morning. In fact, I can go for hours at a time not thinking about it. I too did neoadjuvant chemo and so am so glad that I did, for numerous reasons. During chemo, there are the distractions of researching the best diet and trying to stay active. (As one of the previous posters mentioned, diet, specifically eating a plant-based diet, and also exercise, are supposed to greatly increase survival rates.) Toward the end of chemo, I was 100% distracted while researching and deciding reconstruction options. So now I've completed my major surgery and am very satisfied with the results and have begun Tamoxifen. There's a bit of a let down, like what else can I be doing... In a few weeks, I'll be healed enough from surgery to start running and working out again. You might want to find a support group in your area. I'm not a support group kind of person, but instead I found great support on these boards. Be sure to go on the chemo thread for others starting this month. You might find other threads that are helpful to you where you become a regular. Be sure to read the survivor threads; they REALLY help me. There are many uplifting stories here and elsewhere... Long term survivors with positive nodes, Biographies and Inspiring stories, Stories of Hope on the main community board here. Sending you big hugs and healing thoughts!
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Hello Ann
Im pretty sure those stats are wrong. Here in the UK there is a breast cancer predictor tool called Predict. It was developed through Cambridge university and the NHS and is based on meta analysis (large numbers I believe). punched your stats in (didnt know your age though) and it said 65%.
This programme takes the latest chemo regimens into account and in my case the benefit of Herceptin (as I am Her 2 +) Whilst I do not advocate relying on stats, this just goes to show that new data is emerging all the time and we should proceed with caution.
Try not to see the negative side of things. I know its very hard but you have every reason to be hopeful.
Liz
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Hi Liz, we are all here for you, sending you cyber HUGSxxxx
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I, truly believe that once you have a Diagnosis of Cancer...any type you hear things differently...and it is like you are on the outside of Life watching...you are forever changed....but in saying this WE have to find our own inner peace and that may be just having the people you want around you....and not people making a soap opera....out of us....Liz
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Ann,
Have you thought of any cancer support groups that you could attend? I've heard many are very good, but it's best to get into one that fits your stage, age group, needs, ect. When I received my Dx, I was given a folder will all kinds of useful information, including support group listings. I haven't done so yet, but I am thinking about it.
Right now I go to one on one therapy and it's a good place to vent as well. I was seeing her a little prior to Dx, so we just continued with the big cancer stressor. It has helped to be able to vent, say what I want to say, in a safe place where I don't feel I'm worrying anyone by saying what I am really feeling. The only thing is it's just me and her talking. So I am going to continue to come here (it's been wonderful help), along with probably going to a physical support group. Do what works best for you and of course, we are all here for you.
Hugs to you,
Butterflylady (Sharon)
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Ann everyone has given u such wonderful words and it's not so bad when u get on with everything--u just do it and anxiety lessens cuz u'r busy with treatments and tests so they keep u busy and if u like u'r Dr. that's a plus. Everyone here will give u wonderful support and whoever u have close by and they want to help when u know u need it let them--they'll feel good about helping u too.
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If someone doesn;t hear thier name and breast cancer in the same sentence, I doubt they truly understand. Some do try to understand, and I am grateful. Offers of help, I am uncomfortable asking for much, still working on that one. People on these sites have been consistently kind.
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Ductal, that is because we really do get it because we are there with you.
Love n hugs. Chrissy
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Ann, I understand totally what you and the other ladies here have expressed. I have two words to add: counselling and antidepressant. Talk with your doctor and try these. You will be amazed at the positive difference they can make.
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I have learned to ask for help, when someone says call if you need anything, well I give them a project!
last summer (unrelated but) I had foot surgery and since I live alone, I was nervous about not being able to walk.
so when my guy who does facials said call me, I said, can you get me fresh veggies & bottle water? of course he said yes!
so ask and do not feel guilty
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Hi Ann,
I am a 2 timer... once at 33 in 1995 and at 44 in 2006.
In 2006 found a lump in LB (11 years before had lumpectomy), had biopsy and came back negative but they also found lymph-nodes swollen on right side by ribcage??? They didn't know what to do so they decided to send me for rads. In the mean time some blisters appeared on my LB which I thought was from the bandages so now they are in a panic and biopsy the blisters which turned out to be cancer... because they never saw it surface like this before they wanted me to go to see a panel of experts and then they would decide what to do if anything.
They decided to give me chemo and if it managed to shrink the tumors (the ones we could see) then they would operate, I decided to take pics every month to show my ONC because I didn't want him to make the wrong assumption.
Long story short... ONC happy I took pics, had both girls remove and rads, tamox and now starting Femara.. Still in reconstruction mode and going strong.
If I had of let them tell me odds (didn't ask) or percentages (didn't ask) I would have lost hope for sure.
I plugged along like a good Little Soldier and I am having a great life and look forward to the next 17 years!
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Jill, your post was encouraging. In the midst of trying to encourage Ann, everyone that reads these posts gets some encouragement too. My greatest fear is beating this and then having it come back but you beat it not once, but twice. Jill, you are truly a survivor and an inspiration to me!!! Thank you!
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Hi Tina,
It warms my heart that my journey has benefited others and that there has been something positive that has come out of all of this.
I feel that being positive and having hope is paramount in getting thru this journey with all your marbles intact!
One of the things that I do is to listen to my EMDR cd's when I am feeling stressed, although I should listen to them daily as they are helping my mind heal. What is EMDR you ask : This is a form of hypnosis that was first used to help Vietnam Vets with PTSD, it helps you to stop the negative self talk in your head and move past the trauma of the fear.
I found a great Psyc Doc 17 years ago that practices in this and it truly saved my life. He learn't it from a Doc in the USA so I know that there are Doc's out there that know how to do this and I would highly recommend it to anyone.
If anyone is thinking of doing this I would first check them out with the Psychological Association in your area to make sure they are legit!
It may not be something for everyone but it sure helped me get my life back. I knew I needed help when my DH would say "next year we will go to Mexico for vacation" my thoughts were " yes if I'm still hear" so I stopped that thinking and 17 years later still going on great vacations to Mexico! Thank you Doctor Wilensky!
I also play a lot of racquetball and take it out on the little blue ball, even when I was going thru chemo I played and used to beat all they guys so they started calling me "Cheroid" because of the chemo/steroids I was on and wanted to test my urine before each game... sore losers ;P
The reason I mention this is that I didn't put my life on hold and managed... come hell or high water to get out and do the things that I loved and be around all my friends as "it was something I was going thru and not who I was" and I was accepted by all of them and before long all they saw was Jill in a bad hat... which I was allowed an equipment time out for if it flew off during a match ;p
Now get out and live your lives ladies.... there's no do overs.....
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When I was diagnosed last year, it was a complet shock. No family history, I was very healthy, exercised, young, ate healthy.... The doctor and I thought it was nothing and when the biopsy came back positive we were both in shock. Especially since I had just had a check up by my ob 2 months before and no lump was felt. The first thing my breast surgeon said to me was, "I can fix this. You are not going to die." I said ok. Let's fix it. From that point on things just got worse. Everytime I went in, it was more bad news. After the surgery we found out it was a stage 3 instead of the 2 we originally thought. I have two children. One was going through his senior yr of highschool and my daughter was 4 yrs old. So keeping a smile on my face was very important. I am not going to say that it didn't get to me and I never cried, because I did! I have tried to have as much fun with it as I can. I have had a mohawk on several occasions, enjoyed saving money on hair products, had bad scarf days and laughed laughed laughed. All that being said, I am scared to death of not living the long and healthy life I thought I was going to live. I pray that I still do and that I will never have to go through this again and that my daughter will not have to go through it either. But the fact of the matter is, I am one step closer to death than I want to be. It is always in the back of my mind. So I try to live my life to the fullest now. More so than before. Because I never know when or if it might come back and if it does, I do not want to have any regrets. My bucket list is full effect! Well minus a few things I am saving for the end. lol
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Hi everyone, I can't believe I forgot I even posted this (can I blame chemo-brain?), now I come back and find all these wonderful stories and support. Thank you all.
I'm still struggling with the prognosis a bit but overall I am not feeling hopeless any more. The initial panic I was feeling since dx has passed. I think most of the time I actually feel calmer and more peaceful than I did before the dx. And would you believe I got married 5 days after I posted this? The fiance and I had been talking about that for a few weeks, then we went off and did it. It felt pretty life-affirming to me to go ahead with that. It was something just to believe I was still worth marrying, you know?
I still haven't settled on whether to try to believe in best case outcome, or try to somehow live well in the face of the uncertainty, but it's getting easier. I guess acceptance is a process.
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Congratulations on your marriage! What a beautiful thing for you in the midst of a very difficult time!
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