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scared

PADANAG
Posts: 20
Joined: May 2012

I posted this a day or so ago  but it seems to have disappeared so I am posting again.  If you you replied please do so again since I didn't see any replies.

 

Today is not a good day. Feeling very scared and uncertain of my future. Had One Abraxane treatment so far for mets to nodes and one small spot on my hip. Trying to deal with after effects of whole brain radiation too. This has caused a terrible ear infection among other things. I am on antibiotics and have steroid ear drops but it is not getting better. 

I am scared, I am only 43 years old. I want to be here for my kids. My youngest is only 3! 

I think i need to hear some success stories, I know there women out there who live with this for a long time...can I hear some your stories? 

I would also like to hear from anyone who has endured the WBR and Abaxane. What were your side effects and reactions?

Hugs,

Dana

sweetvickid's picture
sweetvickid
Posts: 439
Joined: Nov 2009

Myself - 2.5 year survivor - 57 years old

Mom - 10 years - now 80 years old

Great Aunt -34 years - just had her 99 year birthday Christmas day

Great Aunt 40 years - lived to be 96

Cousin - 16 - now 47 years old 

Cousin 12 years - now 62 years old

burcu123
Posts: 70
Joined: Jan 2013

Please know there is a way to prevent  breast cancer. Your current female relatives should be aware of this too.

There are 3 medications that can decrease chances of breast cancer 50 to 70%.

Tamoxiphen is the only one approved for premenapausal women. Chances are your physician is not going to tell you. It's side effects are unnecessarily exagerated. Most scared side effects of possible endometrial cancer and blood cloths are less than 1 in a thousand . After age 50 it is slightly higher.

after menapause there are two better choices raloxiphen and Arimidex. Both highly effective.

So why is not your physician does not recommend this chemoprophylaxis. That is the million dollar question. I think because no one is teaching them how much these treatments are effective. they are too scared of the side effects as it is out of their comfort zone.

Recently National England health system decided to recommend chemoprophylaxis for high risk patients with tamoxiphen. I am attaching the news:

PLEASE INQUIRE ABOUT IT. IF EVERY HIGH RISK WOMEN CAN USE THIS THERE WILL BE 30000less breast cancer patients per year.

CypressCynthia's picture
CypressCynthia
Posts: 3914
Joined: Oct 2009

To my knowledge, there is no chemoprevention available for triple negative breast cancer--one of the more common breast cancers in younger women. 

sweetvickid's picture
sweetvickid
Posts: 439
Joined: Nov 2009

I have a friend who was stage 4, found lesions on her brain.  That was about 6 years ago.

Mittensandmedwick
Posts: 85
Joined: Jul 2012

I had a lumpectomy and 3 lymph nodes removed in June 2012. I had 33 rads treatment and now I am on an anti hormone pill for 5 years. I just had my first MRI done since my surgery and thank God no cancer was found. I know it is not the same as your, but there is a lot of people who know what you are going through, and are here to support you

Josie21
Posts: 338
Joined: Nov 2012

Whenever I get upset, I think about my neighbor.  Stage 4 at 40 years old and now she is in her 60's!! She is amazing and is in better shape than me and I'm 47.   She goes to the YMCA every day and does Zumba and Pilates.  Everyone back then said she wouldn't make it.  Boy did she show them!!!

disneyfan2008
Posts: 5276
Joined: Oct 2010

Surgery and radiation 2008-surgery same side last month...for something suspiscious and HAPPY to say it was scar tissue.

Friend LIKE a mom to me survived for over 20 yrs....

Denise

Lynn Smith
Posts: 1265
Joined: Mar 2011

Stage 0 lumpectomy tumor 1/2 centimeter. Just tamoxifn for 5 years.No chemo or radiation.3 1/2 year survivor

Mother was 21 and lived to be 81

Sister was dx dx last July Double mascetomy.4 rounds of chemo and doctor said she's cured.

Niece is a 7 year survivor.Double masectomy 

Friend is a 18 year survivor Stage 3

As we read everyday people are living many years after dx of Breast Cancer.Every year something else is found to help beat it. Every year we're survivors is another year something else will be found to conquer this beast.  

Wishing you the best through your treatment.

Lynn Smith

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SIROD
Posts: 2119
Joined: Jun 2010

Dear Lynn,

Your sister's doctor who told her she was cured after a double mastectomy is a fool.  There is not cure for breast cancer at the moment.  He should never have made such a stupid statement.  Doesn't matter what stage one is, no one including a doctor can predict if the cancer will or will not come back.  For 70% of women it doesn't and they life a normal life.  For 30% of these women who are not diagnose at the get go as stage IV, the cancer returns and since there is no cure, ....  The statement that came out of the following book states it better than I, 

The book:  "Her2" by Robert Bazell -  Page 19,  Chapter 2

...With it’s return the disease assumes a new status, becoming what doctors euphemistically term “treatable but not curable”.  The battle may drag on for years, but the cancer always wins....

They do not find new drugs every year for breast cancer.  Last year was the first time since the early part of this century that a drug was added to the hormonal therapies drug with Afinitor.  They also added a new drug Perjeta for Her2 and that is the first since Herceptin came out in the late nineties.  I haven't kepted up with chemotherapies since my own cancer is slow growing and hormonal therapy drugs are the only ones I use.  However, I do know that new chemotherapy drugs for breast cancer are not added every year.

 

I don't believe in painting a "rosy" picture about breast cancer, it is a very deadly disease.  If a cure is ever to be found we need to look at the facts and state the reality of the disease.

Doris

 

burcu123
Posts: 70
Joined: Jan 2013

I do not know how much my cancer has spread yet but met several women with advanced disease that are alive after 5 years

burcu123
Posts: 70
Joined: Jan 2013

I do not know how much my cancer has spread yet but met several women with advanced disease that are alive after 5 years

SIROD's picture
SIROD
Posts: 2119
Joined: Jun 2010

Dear Burcu123,

Many people with stage IV (not stage 3) can live many, many years but they are the people with slow growing cancers and who are for the most part ER+.  Many women and men do live long lives but they are not the majority

You can read on MBCN site women who have loved 10+ years or more:   http://mbcn.org/get-involved/category/10-years/P0/

Here is one lady who did live 30 years.  She responded very well with Tamoxifen (since your pushing this drug, so very hard) for 17 years after her 2nd recurrence.  Her first recurrence was treated by having her ovaries out.  When she was diagnose, she had a mastectomy and radiation only.  

http://mbcn.org/get-involved/details/my-story-rita-arditti/

 

Doris

CypressCynthia's picture
CypressCynthia
Posts: 3914
Joined: Oct 2009

Hi Dana, I know exactly how you feel as I was only 33 when I was diagnosed with Stage 3.  My baby was just 4.  I only wanted to hear happy stories then and people kept sharing horror stories.  Here I am now 26 years later and, while still fighting cancer, I am in remission again and living with this disease as a chronic condition.  I am still working and doing well and my "baby" is 30...lol!  Hang in there and never give up hope!

P.S. I had symtpms of Stage 4 eight years ago, but was officially diagnosed with metastasis four years ago this April.

SIROD's picture
SIROD
Posts: 2119
Joined: Jun 2010

I was hoping Linda would reply to your post.  She is the only one that I can think of here that has brain involvement.  There may be a few others who are or have taken Abraxane.

There are other places on the internet that deal with only stage IV that you might have a better chance of finding some stories.

They are http://www.bcmets.org  or     http://www.inspire.com/groups/advanced-breast-cancer/new/active/

I do wish you luck and so sorry for what you have endured.

Doris

cinnamonsmile
Posts: 1049
Joined: Dec 2010

My aunt had breast cancer I'd say between 13-15 years ago. She had a lumpectomy, rads, and chemo. I don't know if she was her2 positive or exactly what type of cancer. She is still alive and going strong.

Lynn Smith
Posts: 1265
Joined: Mar 2011

Yes I did think for a doctor saying that she was cured was a bit fast.And besides it had only been maybe 4 months since she found out(her dx). I'm in remission is how I feel.Although I do know and can't forget I have the cancer gene.It's been with me all my life since a strong family history.It just came out when I was 62. Feel the same way about my niece and sister.And of course my mom who was dx over 70 some years ago. She was the first.  She been gone almost 12 years. 60 year survivor. i'm so proud to say my mom lived that long.Just before she passed and was dx with Alzhiemers(sp)  we were able to talk about her long life with the disease and what a miracle she was. I had enough time to let her know how long she survived before she got to the point where she would never know. She was also proud of herself.  

Doctors and not even we can predict how long we will live or if and when it will ever come back. Just today I got my annual(first annural since dx in 2009).I am in remission. Quite  a few pics taken but it was detailed. I was worried why all those pics and what  were they trying to find.Took more pics this time than any of my mammos but what matters I'm in remission.

Lynn Smith  

SIROD's picture
SIROD
Posts: 2119
Joined: Jun 2010

Have you and your family been tested for the genetic BRCA1 & BRCA2?

http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

 

sea60's picture
sea60
Posts: 2601
Joined: May 2010

Going on 8 years this year NED.

Despite statistics, there have been MANY who seem to be cured, healed or experience very long-term remission. Joel Osteen's mom was a miracle story.

Keep the faith and hope Dana!

 

Hugs,

 

Sylvia

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1650
Joined: Jan 2011

Hi Dana - I was dx at 32 in 2011. Took chemo, rads, and now on tamoxifen. Harvested eggs too, right after surgery! So far I am doing well, thank God.

I know a story that I often like to share. My friend's mom was dx with bc back in 1995. She got it back in her liver 6 years ago. Doctors told her she only had 3% chance of survival, very low. She went ahead with chemo anyway, for one year. She has been cancer free for 6 years now and going strong!

Also, another friend of my boyfriend's family was DX in the 1970's. She is still going strong!

There are a lot of good stories out there. Please BELIEVE and have faith that yours will be one of those stories. You are NOT alone. Please stay strong and positive, no matter how dark the path may seem to be.

 

Sending you all my love and hugs.

 

P.S. I am planning on having my first child one day!!! Smile

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