Afraid to Die / Physical Pain

Unknown

I'm in so much physical and emotional pain. I had my CT scans [abdomen, chest, pelvis] on Saturday. Onc. is pretty sure I have mets. Results not in yet. I have severe pain in my right abdomen. Pain meds don't help. I was dx in 10/03 w/ stage 1 hormone negative BC. I'm also HER2/neu negative. I was told that my prognosis was poor.

I'm 41, and my daughter is 9. I'm so afraid; the fear is overwhelming. Will I always be in such tremendous pain? Can this cancer pain be controlled somehow after is metastasizes? I've always admired the tremendous knowledge of the people on this board. Help me, please. I am so devastated.

mssue

Dear Jaded,
It is early morning here-maybe I'm not reading this right,I can't make sense of what I've read. I too was diagnosed at stage 1,that is catching it early the prognosis is very good,I too was neg. for hormone receptors but her2nu pos..I understand that cancer can mestastize(sp)but please wait for the results to be interpreted by Your Doctor.I think we all know what it feels like to have to wait,we can worry ourselves to death-but hang on there.Addressing this pain-I am a big baby when it comes to pain so I can understand that-if the pain meds aren't touching it then You need to let the Doctor know pronto.The pain reminds me of my husbands symptoms of a kidney stone,he had a few big ones to passand the pain would almost make him pass out it was so bad.Thank God I haven't had to deal with that myself I would surely die,if no where else but in my own mind-can't stand pain.

What did they rule out as far as a diagnosis?Who told You that Your prognosis was poor? I just don't feel like You need to be put in such a bad position and made to worry with out concrete information.I am 45 my youngest child is 14. I know what it feels like to feel so out of control that You feel defeated by the tragedies this life has to offer-but-hold on to that string of hope and give Yourself a chance.I'm probably not making alot of sense right now-did I mention it is early.

I hope You find relief and good results , my thoughts and prayers are with You and Your Baby Girl.
You are not alone!
(((hugs)))
Sue

epgnyc

I agree with Sue on this. I know it's almost impossible, but try not to write the ending before you even know what the story is. The waiting is always the hardest - we've all been there and can appreciate what you are going through. I had the same diagnosis as you - Stage I (which means no nodes) and what is called triple negative (ER, PR and Her2/neu negative) and I was told my prognosis is very good - and this was at one of the countries leading cancer centers. Granted it would have been better to have been ER/PR positive, but I was so happy that it was just Stage I. I can only imagine your fear, given the extreme pain you're having. Definitely speak to the doctor ASAP about getting more and better pain meds and hang on. I'm saying a prayer that the news from your test results will be good. Then you can concentrate on finding out what is causing your such pain in your abdomen. Good luck.

inkblot

Hi Jaded:

I'm sorry you're having so much pain to deal with.

I agree with the other ladies here. Wait until you get your definite results. Try not to let your oncologists remarks make you nuts in the meantime.
To my knowledge, anything showing up on a CT is just considered "suspicious" until proven what it may be, one way or the other. While an Oncologist
may have a sharper eye than you or I, he/she doesn't have a crystal ball. Like us, they have to wait for the expert interpretation and advice.
Typically, in such instances, more tests are needed before anything definitive can be diagnosed.

In the meantime, try to calm down some. I know it's not easy but please try.

Another thing which may help to bring you some emotional comfort and hope is that if you go through the posts here, you will find many, many women who have experienced metastasis 1,2,3 and even more years ago and are still here. I think that's so inspirational!!!

I was Stage I, hormone neg and Her2/neu positive
(3+). My son was 13 when I went through surgery, chemo and rads. I understand how you can begin to think of all the things you may never see your daughter do or experience. But don't EVEN go there.

As most of us are aware, that nasty little Her2/neu can negatively effect our prognosis, at least according to the statistics. I don't worry about it. Why? Simple...I don't want the remainder of my life spent worrying about something before it even happens. Again though, it's just statistics. I'm an indiviual and no one can predict where I may or may not fall on that scale of stats. Truth is that none of us are the same, biologically, chemically, environmentally, lifestyle habits, spiritually, our response to drugs, etc.. Who can say why some fair better than others, even with the same treamtment and very similar dx's? No one has an answer, rhyme or reason.

As epgncy said, "Don't try to write the ending before you even know what the story is".

Please know that we all feel your pain and we're here for you to try to help you through this latest turn of events. Please keep us posted and
remember that you must KEEP THE FAITH, GIRL! If you need to just vent your fears, then log in here!

My fingers and toes are crossed that your news may be less frightening than you're thinking at the moment.

Something which always gave me great pleasure when I felt my worst, was spending time with my son, doing anything at all. It always lifted my spirits and one would have thought, to look at me,
that I had a care in the world at that moment. Find whatever takes you away from the emotional torture and upset and put yourself neck deep into it, unashamedly. Let everything else sit on the back burner for a bit. Your spirit is hurting and that's always a priority.

Hope to hear from you soon.

Love, light and laughter,
Ink

Future

If you are having uncontrolled pain, you need to talk to your doctor. If the meds you are taking aren't helping they need to make adjustments to your current meds or try a different med. For chronic pain there are pain management specialists.

No matter what the cause of the pain you should not be miserable -- call the doctor. Be persistent. Understandably you're stressed right now and it may take a combo of meds to help.

Please let us know the final results of your tests. We're here to support you.

Kathern

Dear Jaded,
I'm so sorry you are in so much pain. Tell your doctor if your pain meds don't work. You don't have to be in pain. There are so many meds that can be used to treat your pain. I know that it's hard for some people to take meds. Your body will build against it, so talk to your doctor.
When I was diagnosed with breast cancer, I put myself in Gods hands.Positive thinking is really a good thing.At times positive is so hard.When I would feel sorry for myself I had avery hard time.I am so very lucky to have a very loving and supportive husband. He is my rock.
Your daughter is young and you have alot to live for. You want to watch her grow to be a mother herself,right? So fight!!! You may even try yoga. Wonderful for pain control.
I will keep you in my prayers!!!!!
Kat

babs49242

Hi Jaded, When i was in alot of pain I used guided imageray. I really think that helped me thru the healing part and gave me a peace of mind that I was helping myself heal in some way or another.you may want to try this site...www.healthjourneys.com. Belleruth Naparstek has some good information. stay positive!

nancys

Hello Jaded, I agree with every other posts here. Your prognosis should be very good with no her-2/neu and stage one. Please question your Oncologist as to why he told you such a destructive thing in the very beginning. I think he/she set you up for this panic you are going through right now. I had a slight scare with serious pain in my right side and it turned out to be colitis and antibiotics cleared it right up. Insist on something to handle the pain!!!! There are pain meds available. I have found unless your doctor understands completely what you are going through, they do not take your complaints seriously. They have so many patients and they never get to really know any of them. Unlike years ago when we knew our doctor for most of our life and he took a personal interest in our health. Ink gave you such good advice as she always does. I know everyone here is saying a prayer for you and your own prayers will give you peace of mind. Big hug, Nan

Unknown

I cannot thank all of you enough for your kind words and taking the time to respond... The oncologist just called, and they saw spots on my liver...Now I have to have an MRI of my liver and a PET scan. I will post again when I feel up to it. This is all so scary...

24242

I too am sorry for all your pain. Even though I was dx'd with stage 3 IDC breast cancer with 11 out of 21 positive nodes and Her2 negative I have never been told my prognosis is poor. As a matter of fact though the chances of survival were 50/50 I never once or was told prognosis is bad. Almost nine years later and I am working harder than I have worked since a teenager, mudding and taping drywall. I am also in better shape than I have been since then as well and live my life one day at a time. Lots has had to change since realizing my worth after fighting for my life. I tend to tell people who complain about the aging affects like pain that this thing called living is hard work and that is something we must do, work at it.
I hope knowing that there are woman surviving for many years will help you change your coarse and start working hard at getting back a life you once knew.
Be good to yourself always,
Tara

krkath

HI Jaded,
Im new at this but I totally understand your fear. I'm 51 and am only at 7 months recovery with a lot of leg pain. And believe me when your in pain, your mind isn't in the most optomistic of thoughts.
I still take Percoset every day (1/2 a pill every few hours...trying to get off it) and take a Xanax every night to sleep. I don't think about dying as much these days but when the pain gets bad, I can't help thinking I'm not gonna make it.
The Percoset was the only thing that helped my pain. In the beginning I was taking 6!
You first have to get your pain under control and make sure you get enough rest.
REMEMBER: You're in all our Prayers. Try to get some pain management help. And I feel so bad for you but try and hang in there. Kathy