Very Scared & Upset

kbryan · July 2004

Less than two weeks ago on a Wednesday, I went for my yearly mammeogram - a shadow was seen on the film so I had ultrasound as well. On Friday, I went to see a breast surgeon who was able to feel the lump by pressing hard on my breast, he suggested that it be removed immediately and so it was the following Monday. This Wednesday, he called and told me I had invasive ductal cancer. I went to see him yesterday and he said I could either have a mastectomy or remove more breast tissue (I have implants so that has to go too - I'll be lopsided) and do a sentinal lymph node biopsy (the one where dye is used) and implant a Vortex Reservoir for chemotherapy. He said I'd have to have radiation therapy as well. I chose the second option because I didn't want to totally lose my breast. I am just devasted by this news and don't know how I'm going to get through it. From what I've read, chemo is hellacious, and the thought of losing my hair just freaks me out. I know that I'm at greater risk of getting cancer in the other breast. I just know that the cancer has already spread - I keep reading how it is good to have a positive attitude. I can't dredge one up. I'm terrified and immensely dreading the treatment and its effects. I'm worried about my family, scared that I'll miss too much work and will be replaced there. And then there is the financial strain. Everything I read tells me what an awful experience this is going to be. And then how can you not worry and worry and worry afterwards that it will return. My surgery is this coming Monday - it is all happening so quickly. I'm in Houston - everyone tells me how lucky I am to have cancer here rather than somewhere else. How much will this cancer shorten my life? I feel like I'm never going to be the same again, never happy or silly or have any energy. I feel like things are just going to get worse and worse and then I'll die. I don't want to talk to a counselor, what good would it do? It won't make the cancer go away. I feel like I'm starring in my own personal horror movie. . .

lindatn · July 2004

Welcome to a club you never wanted to join. You will hear from many of us, all of us will be surporting you and answering questions. There are many wonderful old messages to read. We all had your fears when we started, we all have fear when finished that it will come back. We nearly all lost our hair and we all cried at first. We do laugh as we go on this journey. We still love the people we always loved and hope they love us back if they don't they weren't worth our time to begin with. Ask questions on everything that you don't understand. At first fighting cancer will take up all your time if you let it. Treatments do take up a day but it isn't everyday. You will feel terrible at times but not all the time. I'm two years out of treatments and many a day goes by that I no longer think about cancer if I do I give myself ten minutes to think about it and worry and then I have a life to live the rest of the time. God will be with you if you ask him even in the darkest hour. Calling on God is faster then dialing 911. Many ladies will write wonderful letters and I have copied and carried some of them to treatment with me. You will find you are stronger then you thought possible. This to will pass. Prayers are sent you way. Linda

tlmac · July 2004

I found my 2.5cm lump in January 2003. Mammograms, ultrasounds and core biopsies confirmed it was invasive ductal carcinoma. My surgery was on February 6 and I started 4 cycles of AC chemo on March 6. My family have all passed on and I live alone. Every fear you expressed I felt. I was certain it had spread, that I couldn't get through chemo and that losing my hair would be the worst. What I found was that chemo, though no walk in the park, wasn't as bad as some of the hangovers I'd experienced in my youth and that losing my hair, eyelashes and eyebrows allowed me to be dressed and out of the house in under 10 minutes. Once I was faced with the reality of cancer, I realized what frightened me most was the possibility of dying at the relatively young age of 54. I was blessed with a wonderful medical team and friends I hadn't spoken to in years somehow heard and kept in touch. It's natural to feel overwhelmed at first. We've all been where you are and in a year from now, maybe sooner, you'll be writing a comforting reassurance to someone newly diagnosed. Try taking it a day at a time and remember we're all here for you, keeping you in our prayers.
terri

mjzerb · July 2004

I was diagnosed with invasive lobular carcinoma in Feb. It felt like someone ran over me with a truck. How could I have cancer! You will survive and grow old. Breast cancer can be beat. I know how you feel about it spreading, I thought that I could feel it spreading into my chest wall. Of course it didn't and the surgery erradicated the entire tumor and my lypmph nodes were negative. I chose to have bilateral mastectomy with reconstruction. I don't ever want to go through this again. Whatever decision you make will be the right one for you. Chemo sucks, but you will make it through it. Hats are very stylish and people tell me that I look very chic! You are stronger than you think. I am praying for you. If you put your faith in the Lord he will be there to comfort you in this terrible time in your life. There is hope and you will be cured. It is going to be your first priority for the next 9 months to a year, but you will make it through this. The best thing I can recommend is a book called "Just Get Me Through This...The Practical Guide to Breast Cancer" written by Deborah A Cohen. It really helped me alot. I know that you are scared, we all were. The best thing you can do is pull yourself together fight. I KNOW that you will beat this. God Bless, Janet

bettygee · July 2004

You have come to a great place to find support in your ordeal. We have all had to face the intial horror of diagnosis that every woman fears. It is true that treatment is very difficult, it varies a lot from person to person but no one can look forward to it. You too will get through it and your hair will grow back.
somedays you will feel relatively well. It is difficult to keep a positive outlook, just do the best you can a day at a time. I will be thinking of you and praying for you, as, I am sure will others who read your message. God bless you and keep you.
Betty

Unknown · July 2004

I'm a 11 year cancer survivor, and in 11 years you'll be saying that too! I was 57 when I had bc, had a modified radical mastectomy with immediate reconstruction, was a widow and lived alone (my kids live all over the country), also worked full time. I have since remarried and moved to Texas (NW of Huntsville)where we bought land and are in the process of building ourselves a house.
You are on an emotional roller coaster, some days you'll feel like you could beat the world and other days you'll want to just give up - but hang on, it DOES get better. When I had bc I figured I was entitled to 15 minutes a day of whining, and I used it when I had to brush my hair and clean the drainage tube under my arm (you already know how that feels)!
Hang in there girl, there are a whole lot of us rooting and praying for you, and we'll answer any questions we can and/or do whatever we can to help you through this. Just remember - IT WILL GET BETTER!
Clara

kbryan · July 2004

Everything I read is negative to me. I just can't seem to pull in any optimistic thoughts. I still feel positive that it has gone past my lymph nodes, why else would my surgeon have been so insistant on putting in the reservoir for chemotherapy? I truly feel that this is the beginning of the end. I have a lump of fear angst in my throat that I just can't choke down. Thank you for your kind thoughts and prayers. I feel so shattered, nothing will ever be the same again. I am losing part of myself and the thought of living with the constant threat of reoccurance devastes me. Me, me, me - I am selfish. I am lost.

bunnie · July 2004

Hi i had a mastecomy Jan 03 went through chemo lost my hair and have for the most part staye positive you cant let this get you down you just need to be happy that your a live and take one day at a time Dont get me wrong i do have my days but being depressed isnt going to change the fact that i have cancer.Iam still fighiting it in fact it has moved too the lungs i just got done with chemo week beforoe last and i go in on the 22 of this month too see where iam at.I did loose my hair again and it wasnt quite as hard this time around.I have been deling with this for a year i was only off chemo 7 months in the last year.You will find lost of friends on this site and we will help you as much as we can.It is natural to wonder if it is going to come back i keep thinking are we going to get this under control or iam i going to dye before iam even 40.My doc wants to put me on permant chemo if this is in remission to keep it that way it would be treatments every 8 weeks but not sure if i want to go that route.Please keep us posted on how things are going and like i said we are here for you the chat room is wonderful.Bunnie

JodiLynn · July 2004

Hey sweetie,fear of the unknown can be terrifying. i was in your shoes just 8 months ago. i was pregnant and found a lump after getting an email from a friend on self checks. i found a lump that i couldn't believe i hadn't noticed. i could see it from my reflection in the mirror. my ob/gyn was sure it was a clogged milked duct since i had problems with my breast with my other 2 children. I had just turned 24 that september and he told me I was too young to have cancer, and I had no risk factors. He sent me in to get it drained but they told me it wasn't fluid filled and wanted to do a biopsy for precaution. November 11th I got bitter sweet news. I went to my OB and found that I was very close to going into labor with my 3 child our first son. Later that day I went in for the results of my biopsy and I too was diagnosed with IDC. I had taken my sister and children with me because I was an hour away from home (we moved and i didn't want to change ob)so i had to keep a brave face for their sake. I was numb, and honestly i don't remember anything they said after the word cancer. i had my son 6 days later and the day after he was born i had surgens and ono's in my room discussing my options. I didn't like anything they had to say. They had me on my death bed before i got started. I live in Ohio, near columbus, and family and friends told me to go there. I went to the James Care Cancer Center and was treated like royalty. Not surviving was never an option for me, and it never will be. Being bald rocks sweetie! It takes 10 minutes in the shower, unless you are like me and hate shaving your legs... then it's 15 minutes. ha! when you wash your head you make this really cool squeaking noise like when washing tupperware. you can have differnt hair everyday of the week if you wish. a lot of insurance companies cover wigs and you can try all sorts of new things. I never lost my eyelashes or eyebrows but they did thin out. There was none of that horrid eye brow plucking for months.. i had no periods, and got lots of good cooking from family and friends. so there is an upside even to cancer. Chemo isn't fun, but I bet it won't be as bad as what you have in your head. I did chemo first to try and shrink the lump, and then i had a lumpectomy. just like you i knew it had to have just spread like wild fire. but my lymph nodes where fine and so was the tissue surrounding the tumor. Will it ever come back? Only God knows. But I do know he carried me the whole way, and He will you too. He is the Great Physitian, and he has the power to heal you totally if you put faith in him and pray without ceasing. If you need to talk more on this let me know. We are all hear for you and understand completely what you are going through. More on my story is Hope for the Hopeless on here.... or any of you can reach me at JodiLRiggsby99@aol.com
God Bless, and Take care... Even when you feel like crying(which you will do from time to time) make sure you smile... it can strangly be a blessing if you let it and learn from it.

hummingbyrd · July 2004

kbryan said:
Everything I read is negative to me. I just can't seem to pull in any optimistic thoughts. I still feel positive that it has gone past my lymph nodes, why else would my surgeon have been so insistant on putting in the reservoir for chemotherapy? I truly feel that this is the beginning of the end. I have a lump of fear angst in my throat that I just can't choke down. Thank you for your kind thoughts and prayers. I feel so shattered, nothing will ever be the same again. I am losing part of myself and the thought of living with the constant threat of reoccurance devastes me. Me, me, me - I am selfish. I am lost.

You've taken the first important step girl and that was coming to this site. As you can see there are lots of loving, caring women here ready to comfort and share their stories. Might I suggest you also visit a website called
Conquering Cancer Through Christ at
www.urcctc.com
That's what came out of my diagnosis june 2000 at the age of 38. Maybe you can find hope and encouragement there, cause a positive attitude IS a great deal of the battle.
God bless and (((HUGS))) to you.
hummingbyrd

tlmac · July 2004

No one here believes you're selfish for being overwhelmed. Many of us have personal experience with that same mindset. I'm not even sure that any of us can say anything at this point that will make your fears disappear. That will take time. Regarding the Vortex "Clear-Flow" Reservoir Port, let me just say that many in the medical community consider it far superior to other ports. Having a port is not a sign that the cancer has spread. It's designed to make chemotherapy injections easier on you and your veins. The sentinal node biopsy is an approach that saves you the invasiveness of a level 1 axilary node dissection where the surgeon goes deeper into the armpit area and you are left with loss of sensation, a greater threat of lymphedema and a longer recovery time till you can use your arm as before. If your surgeon believed your lymph nodes were involved, it's unlikely he'd suggest the sentinal node approach. If found to be positive, the removal of a sentinal node would have to be followed by axilary node removal. I find it hard to believe any surgeon would intentionally put you through an additional procedure if he thought it was obvious your nodes were involved. The term "invasive" is scary and it brings up images of the cancer spreading all throught your body. The truth is, breast cancer that involves even a few cells of the breast, beyond its own encapsulated beginnings is considered to be invasive. Once the affected breast tissue is removed, the loose cancer cells go with it. Chemo and radiation make certain nothing is missed. If we could snap our fingers or say a prayer that would bring you instant peace of mind, we'd do it in a heartbeat. I remember feeling the way you do now and it was horrid. When you feel panicked or just need someone to listen while you vent, come back to us. You WILL get through this, even if it doesn't feel like it today. Thoughts & prayers.
terri

dtrofgrace · July 2004

I felt just like you when I was diagnosed 3 years ago at age 44. I thought my whole world had ended. I almost refused chemo because I was so terrified of it. But after researching it, I was scared not to. I also was horribly upset about losing my hair. Losing it was hard, but after it was gone I was surprised that it didn't really bother me. I got a gorgeous wig, and I got more attention from strangers than I've ever had in my life! Men jumped out of nowhere to open doors for me, and one girl even asked me what kind of shampoo I used! Nobody knew it was a wig! Now I miss the wig!
Of course, I feared the worst when I was diagnosed. I was sure I would die of this disease. And it is possible. But a year after I was diagnosed, my young healthy neighbor suddenly dropped dead of a brain aneurysm. She had mowed my grass for me while I was on chemo--I never dreamed I would still be alive and she would be gone. Nobody knows the future. We may live to be ninety.
It's hard to feel positive when you're so overwhelmed. Don't feel pressured to be a Pollyana. But you will survive, and you will come out stronger.

SusanAnne · July 2004

I'm thinking of you today, since I know you are in surgery. When you read this at least that part of things will be over. I think that sounds like the best way for you to approach this, one day at a time, one phase at a time. Please know that having chemo doesn't mean that the doctors think your cancer has spread. The best way they know to beat the cancer and cure you is to give you everything in their arsenal from the getgo. I had one positive node and it didn't go beyond that. You will most likely have a Cat scan after your surgery which should put your mind to rest and tell you it has not spread. Best of luck and remember we are here.
Susan

inkblot · July 2004

Hi kbryan:

By the time you're reading some of these responses, your surgery will be over! That's one phase of it done and you'll be ready to move on to the next step of treatment.

I wouldn't surmise that your doctor thinks it's spread at all, just because of the talk about chemo, etc.. Why are you thinking it has spread?

First, candidates for the sentinel node procedure, have clinically negative nodes. Meaning the doctor cannot feel any swellings, lumps, etc. in the axillary lymph nodes. So, that's actually a good sign. And as some other's have explained here, it's a much less invasive procedure than the standard prodecure of taking out far more nodes.

Re the port: That's totally your decision...not your doctor's. Read up on ports and after a consult to determine how good your veins are, etc., THEN decide if you want a port. Of course if the doc plans to place a port when you have surgery, it'll likely be a moot point by the time you read this. Many women prefer the ports and have no problems with them.

Before having chemo or radiation, I'd advise researching everything involved. Get a copy of your post surgical pathology report and discuss it with your doctor in detail. Also, I'd get at least one second oncology opinion before having chemo.

Re being lopsided: You can have a new implant placed later on.

Radiation is standard follow up for lumpectomies, so your doc saying that you will need it, is just following protocol for lumpectomy. It doesn't mean your cancer is really bad or advanced or spread.

You may want to visit: www.nci.nih.gov This website has details of Staging of breast cancer, treatments, etc. which can be really helpful in making decisions and better understanding your pathology report. There are also many very good books specifically about breast cancer which offer a wealth of info for the newly diagnosed.

I know it sounds overwhelming and you're very frightened right now but one of the best things you can do for yourself is to begin to get educated. Things can move very quickly and you don't want to jump in here or there and later, wish you'd known more, after the fact. Once you begin to better understand it, the terminology, etc., you'll be better armed with information to help you make better informed decisions and you'll feel better prepared in asking questions and talking with your doctors about choices, etc..
Chemo doesn't need to begin immediately (the ideal window, particularly in early breast cancer, is said to be 4-6 weeks) so you'll have some time to learn more and recover some from the emotional trauma and move forward in a more focused manner.

Chemo isn't a nightmare for everyone. Some women even continue to work while having it. Visit here often and talk with other's who've had similar experiences and you'll see for yourself.

None of it is easy and the choices are not easy but you will be ok. The first few weeks, following diagnosis, were the craziest for me...up and down, all around, trying to learn more and find out all my options, making appointments for additional opinions, etc.. Granted, it's a tough go, but you will calm some and you will not feel this way forever.

Hoping your surgery went very well and hoping to hear updates from you soon!

Love, light and laughter,
Ink

hounddog · July 2004

Hello
It is normal to be scared what you are going through is a storm in your life .The important thing is to take one day at a time and put your trust in God .John 6:14-21 talks about the storm . I went through a mastectomy last year in February and one in Nov.1989 it is not that bad you do not want to have implants because they can be dangerous a friend of mine went to Washington over implants . You are in our prayers .
Marilyn

lynne40 · July 2004

It is so normal to feel like you are feeling. Terrified and pissed off and why me. They are all phases that come and go like the stages of grief. You are grieving for the old you and your old peace of mind! I was diagnosed a year ago. I was overwhelmed at first by everything too. So much info to forge through in a a short time. I asked all of the questions of every doc I saw. "what will happen if I do nothing? Are there people walking around for 20 years with what I have and they don't know it?" I got a resounding "NO" and the docd freaked out a little bit, however the choices offered to me were as different as the docs. I too have implants and the first 2 offers were remove them. one doc suggested removing both breasts while we're at it(how many penis removals are there for cancer?) thought I'd ask! Long story short, I had a core needle biopsy, a lumpectomy,sentinel node biopsy, no lymph nodes involved, chemo, lost my hair eyelashes and eyebrows 3 times (it was traumatic for me) but I got a great wig before hairloss and my chemo nurses finally asked me one day if I was experiencing ANY hair loss because they couldn't tell when I moved on with the wig, I opted not to have radiation. Now a year later I still have my implants no sign of recurrence and my hair is about 6 inches long and very very curly. Just wanted you to know there are more than one opinion on every issue. Do what makes you comfortable and keep looking forward. I think about it less every day and I used to be consumed by cancer thoughts! Keep praying. I prayed for guidance to make choices that were good for me, and peace with these choices and strength for my kids,husband and friends. Hope surgery went OK. I'm praying for you! Email me anytime Hugs,
Lynne

tlmac · July 2004

Have had you in my thoughts today and wondered if they discharged you. I stayed in the hospital for 2 days but have several friends from my support group who went home the next day. I pray your surgery went well. Let us know how you're doing when you feel up to it. Remember we're here if you need us.
terri

marbleslab · July 2004

Wanted to let you know I was thinking and praying for you today. Please let us hear from you ASAP so we know how the surgery turned out. If you need to talk ANYTIME, you can contact me at ms@csbrand.com or stimson.dds@juno.com. If you want to talk on the phone, email me and maybe we can get together. Please know that we have all been where you are. I know that's hard to imagine, but YOU WILL MAKE IT.
Marla

kbryan · July 2004

On Monday, the surgery went well and a sentinel node biopsy was done. I was released from the hospitial the next day. Very sore and difficult to sleep. Went to work Thursday morning and was more sore than yesterday. It hurts also when I straighten out my left arm (the cancer side), it feels as though something is pulling from my armpit to my wrist. My lymph node report came back negative and my margins are clear - good news! Why don't I feel relieved or happier? I took the bandage off today and my breast is so sadly shrunk and saggy - it's hard to look at. Hope I feel less sore tomorrow. I feel awfully ugly these days, I just can't see that changing. And yet I know there are millions of people in much worse situations than I am - how spoiled and selfish I am.

People at work have been very nice, but I still don't really want to talk about all this to anyone. I don't feel as though I can be happy looking like I do now and in the near future - how very vain. Blah, wish I could escape my body for awhile. Can't seem to escape my depression over the whole situation. Thanks to all for writing and all the encouragement.

hummingbyrd · July 2004

kbryan said:
On Monday, the surgery went well and a sentinel node biopsy was done. I was released from the hospitial the next day. Very sore and difficult to sleep. Went to work Thursday morning and was more sore than yesterday. It hurts also when I straighten out my left arm (the cancer side), it feels as though something is pulling from my armpit to my wrist. My lymph node report came back negative and my margins are clear - good news! Why don't I feel relieved or happier? I took the bandage off today and my breast is so sadly shrunk and saggy - it's hard to look at. Hope I feel less sore tomorrow. I feel awfully ugly these days, I just can't see that changing. And yet I know there are millions of people in much worse situations than I am - how spoiled and selfish I am.

People at work have been very nice, but I still don't really want to talk about all this to anyone. I don't feel as though I can be happy looking like I do now and in the near future - how very vain. Blah, wish I could escape my body for awhile. Can't seem to escape my depression over the whole situation. Thanks to all for writing and all the encouragement.

Don't know about everyone else, but initially my breast was the same way. A 4 cm lump had been cut out and I was pretty sunk in and saggy, but it filled on back out...and radiation even firmed the tissue like I've had an implant! Had a smaller lump taken out of opposite breast; told them when they radiated it I expected same results! LOL
They said that was the first time they had heard of that request. Didn't work on that side.
Oh well, so I got one firm, one saggy...that's why they make the 'miracle bra'!
That was June 2000 and August 2001. Far as I'm concerned, it's just a miracle I'm still here.
Don't worry about being vain, that's rather natural, I think. I know I was more worried about my hair loss than anything else. This crazy disease makes us a little crazy, depressed, stressed and cranky...but when it's all over I think we are better people. Just my humble opinion. Hang in there you'll make it just fine.
God bless and (((HUGS)))
hummingbyrd

dtrofgrace · July 2004

kbryan said:
On Monday, the surgery went well and a sentinel node biopsy was done. I was released from the hospitial the next day. Very sore and difficult to sleep. Went to work Thursday morning and was more sore than yesterday. It hurts also when I straighten out my left arm (the cancer side), it feels as though something is pulling from my armpit to my wrist. My lymph node report came back negative and my margins are clear - good news! Why don't I feel relieved or happier? I took the bandage off today and my breast is so sadly shrunk and saggy - it's hard to look at. Hope I feel less sore tomorrow. I feel awfully ugly these days, I just can't see that changing. And yet I know there are millions of people in much worse situations than I am - how spoiled and selfish I am.

People at work have been very nice, but I still don't really want to talk about all this to anyone. I don't feel as though I can be happy looking like I do now and in the near future - how very vain. Blah, wish I could escape my body for awhile. Can't seem to escape my depression over the whole situation. Thanks to all for writing and all the encouragement.

I'm so glad to hear your nodes and margins were clear! Don't worry about feeling vain. You're normal. This disease strikes at our feelings of femininity, no doubt about it. But while it may make us feel less feminine for a while, those are just feelings. Breast cancer cannot change your true femininity. There are many very beautiful breast cancer survivors--even some celebrities--and they all went through the same feelings.
You're going through a lot right now. It does get better.

Very Scared & Upset

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