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New Stage IV Diagnosis

miamigrl
Posts: 4
Joined: Dec 2012

Found out my stage IIB is now stage IV after one year of herceptin. Mets to tailbone, pelvis, hip. Doc says liver and lung as well. Started 4 weeks of radiation on bone.Then chemo will start. Terribly nervous about remaining functional through treatment at stage IV. Desperately want to meet others and find out how you cope. Are you able to work? I have no family to help me and am not sure how I will manage. I am single and live alone. This is the first time fear has found me. Trying to get centered and believe I will still have a full life while in treatment.

SIROD's picture
SIROD
Posts: 2189
Joined: Jun 2010

Hi Miamigirl,

You will find many ladies on here that are stage IV. We are all in various stages with the disease.

I have been doing online discussion boards since 1997. I remember a woman who like you was diagnose with mets to bone, liver and lungs .Hers was diagnose that way. She lived 11 years with the disease and since her death, there has been some improvements with treatments. Don't despair.

Mine is a slow growing cancer, I was diagnose in 1994, recurred regionally in 99, mets in 2000 and then the new hormonal drug that just came on the market kept me NED until 2008. A ct scan showed me that NED (no evidence of disease) had left and I now had widespread pulmonary & pleural metastasis, the ribs came back too. I am ER+ so have used hormonal drugs after I had finished with chemo back in 1995.

Everyone is different. I still work and always have. I never allowed rads, chemo, surgeries to interfere with my life. I took time off with surgeries but did work thru rads & chemo. I have been divorced for many years now and am very independent. Except for my grown up sons, my family don't live anywhere near me. I have always manage to do for me and I am certain you will manage also.

Some places do offer transportation if you need it. I understand the fear. Hormonal drugs have been good in keeping me alive but when your on them forever, I have developed many side effects. I have a hard time walking now and at times I wondered how I was going to manage. My doctor suggested I wear a pain patch and they do wonders. Plus I wear lidocaine patches where I need them to help me walk. You will find ways to manage.

I am certain that others with stage IV will post and give you some advice in living with stage IV. It is all doable.

Wishing you the best,

Doris

miamigrl
Posts: 4
Joined: Dec 2012

Thank you so much for the encouraging words. I am trying not to be afraid of what I do not know and right now I do not know what the liver and lung situation is and so I will focus on the radiation of the bone and managing the pain - which is manageable. The doctors seem surprised I am walking aroun unassisted and even driving myself to radiation. I have pain but feel well enough to get around. I pray I can remain functional for most of my treatment.

My oncologist said he would not run a test to see if the cancer had spread to my brain. I think that is odd - even though I am not feeling courageous about the test either. I have decided to fly to Stanford Cancer Center on Christmas day - my gift to me - to meet with my original oncologist for a consult on the 26th. I will check in here often as I know I will need a connection to help me through this journey. I am still in shock about the events that occurred and I try every day not to land in a heap on the floor. So far so good. Thank you thank you for taking the time to reply to me. It means the world to me.

CypressCynthia's picture
CypressCynthia
Posts: 4011
Joined: Oct 2009

I am so, so sorry that you are having to deal with this. Hang in there! Like Doris said, many of us have Stage 4 and are doing well. I had mets to my ribs and probably my right lung too (lung with damage but unable to biopsy it). I have responded well to treatment and this April will be 4 years out with mets. Don't give up. BTW, I am still working fulltime, but I did quit a prn extra job, because it was too much. Whether you continue working or not will depend on how you doing and feeling. I do have family, but they mainly act like I don't have cancer...lol. I am praying for you and sending huge cyber hugs.

Lynn Smith
Posts: 1265
Joined: Mar 2011

You will learn so much on this Board.There are many with Stage IV like was said and doing fine.Living many years.My friend and classmate lived 12 years.She was Stage IV.It spread to the bones.Her Twin sister was going to donate bone marrow but she never got well enough to do that but she fought a courageous battle and lived quite sometime doing so.

I was Stage 0 with DCIS, my mom lived 60 years with BC(passed at 81),my niece is a 7 year survivor and my sister was just dx July with Stage 2.My sister only needed 4 rounds of chemo and doing fine.No radiation.My sister will be taking tamoxfin. Sister and I were dx at the same age 62.I've had benign tumors and cysts since I was 20 and my mom was dx with her BC at 21.Runs in the family with 4 of us so far.I worry about my granddaughters.

If you have any questions there are many on here who will help you.I didn't need chemo or radiation so don't have alot of knowledge about that.But I have found out there are many different chemos.If one doesn't work doctors try another.

Wishing you the best.

Lynn Smith

New Flower
Posts: 4065
Joined: Aug 2009

Sorry it is very hard to face Stage IV diagnosis.i know it from my own situation. After 4 years being with NED it has happened to me 6 months ago
My oncologist suggested to start with systemic therapy Chemo without any delays. It has been a right approach for me as Chemo took care of bone pain. Please come back and tell us about your progress
Hugs

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1654
Joined: Jan 2011

I am sorry about your recent diagnosis. I am not stage IV but many here are going through it, unfortunately. They will be able to help you answer some of the questions and concerns you have.

I will add you to my prayers. Please remember to stay positive, have faith, no matter what you see or hear.

You're not alone.

Sending you a big hug.

Lighthouse_7's picture
Lighthouse_7
Posts: 1566
Joined: Jan 2010

So sorry for the stage 1V dx but there are a lot of ladies here with it as you will see who have done very well. I'm curious, how long was it from your 2B to where you are now?
I will say some prayers for you and fight like a girl!
Hugs,
Wanda

miamigrl
Posts: 4
Joined: Dec 2012

Hi - Thank you for your encouraging words. I was diagnosed in June 2011. I had numerous tests and interviewed a handful of doctors before I settled on an oncologist, Mark Pegram at University of Miami, who was fabulous. Unfortunately he moved to Stanford 1 month after I started my chemo in November 2011. I had 6 rounds of taxotere, carboplatin, herceptin. Then herceptin for one year - last one was November 9. I became in very ill on November 11 - went to ER where I had a collapsed lung and congestive heart failure. While there they discovered the cancer had spread and to say the doctors were shocked is an understatement. In April - no sign of bc in my scans. Some red herring in pet showing a nodule in my lung that was later determined inconclusive. I had back and bone pain most of the summer and my oncologist told me it was "common" with the chemo and recovery and I should work out and work through it. He told me this three times. I listened. This was a mistake. I should have pushed for a test. He has now said the cancer mutated and became resistant to the herceptin and the herceptin was ineffective. I am trying not to be angry since there is nothing I can do.
I am off the fentynal patch after two weeks of radiation. I consider that a success. Had a few withdrawals coming off of it that was not so good but manageable.
I was able to enjoy a day trip to key west yesterday with a friend driving. That was an accomplishment. I also enjoyed my first full night of sleep last night - 8 hours straight. I feel wonderful this morning. I have very little pain - will work most of the day today and then go to radiation. I can now walk my darling english bulldog, Romeo- it is hard but I can do it. I am trying to find my moments of success and focus on the positive things I can do rather then what I cannot do. I thank you all for the support,as I am someone who finds it hard to ask for help. I will check in often. I feel your prayers and love. God Bless You

aysemari's picture
aysemari
Posts: 1590
Joined: Dec 2009

welcome and so sorry you have to be here. But let me
tell you that you will find some of the most inspiring
and wonderful women on this board. And I know they will
respond to you and guide you through your journey.

One thing I personally can relate to, is the being alone
part. I was also single and lived alone, and must say it
was hard. My advice to you, please reach out. To support
groups in your area, there are some amazing people out there
who will help you when you least expect it. If I was in Miami
I would offer my services to you in a hearbeat. I was driven
to the hospital to get my mastectomy from a wonderful woman
on this board, if you can believe that. MissRenee was this
wonderful woman. I was so naive, after reading a post about
a woman who made a little pillow for her seat belt, I thought
I can drive myself there, it never occured to me that maybe
she wasn't in the driver's seat...lol. I never had a surgery
you see, never was sick before... so clueless was I. Then I
found this site and it was my lifeline, literally.

So I hope you will find the guidance and comfort I found on
this site. And while I a no longer in treatment and can't help
you with your questions, feel free to send me a message if you
just need to chat.

Hang tough,
Ayse

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Hi Miamigrl,

I'm stage IV as well, triple neg inflammatory BC. I got through my initial dx by taking a leave of absence from work. Treatment for the initial dx took about 10 months. I had about 4 months with NED. Then I had a local recurrence, additional testing at the time found mets to the lymph nodes between my lungs. My time with NED was so short, I never really got used to it. I've been dealing with BC for over 2 years now.

So, what gets me through? First, my kids and husband are big reasons to keep going. Second, the people here have been amazing...unconditional support with great advice.

I worked for the first 9 months after I was dx'd stage IV. And I definitely pushed myself too hard...I worked about 50 hours a week plus chemo. It got to the point where I wasn't doing a good job at work because I was too fatigued, I became depressed, I couldn't meet the needs of my family...so back on LOA. So I have both worked and not...not working seems to be better for me and my family.

I know in my area, ACS has lots of services to help...rides, people to talk with, etc. Click on 'community resources' in the blue box on the left, or call their 800 number. Also, some cancer centers have 'peer navigators' or social workers who can help you find the right resources. Finally, when you do have friends or coworkers offer to help, accept it. I got better at that with the stage IV.

Please keep coming back here. We want to help, and we care.

Hugs,

Linda

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