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All TopicsForum: Stage IV and Metastatic Breast Cancer ONLY → Topic: How long from diagnosis to start of treatment?

Topic: How long from diagnosis to start of treatment?

Forum: Stage IV and Metastatic Breast Cancer ONLY — A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only or those posting on behalf of a Stage IV patient. There is a separate forum for Stage IV Caregivers/Family in "Support and Community Connections".

Posted on: Jan 6, 2012 06:38PM

Anko66 wrote:

I have just been diagnosed with stage IV breast cancer with mets to my liver.  I first saw my consultant on 15th December 2011, and the cancer was confirmed the next day.  Since then, I've had biopsies, bone scans, MRIs, etc. but my full results have been delayed due to the holiday period.  I have finally got a date to start chemotherapy (17th January), and I am panicking because this will be almost 5 weeks after the initial diagnosis.  Since my cancer is particularly agressive I am really worried that I've lost time.  Worst of all, the tumours in my breast have started to hurt, and I'm experiencing all kinds of aches and pains (although I should point out that I had liver biopsy yesterday).  If anybody could share their stories from diagnosis to start of treatment I would be very grateful.

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Posts 1 - 22 (22 total)

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Jan 6, 2012 07:09PM, edited Jan 6, 2012 07:10PM by Chickadee

It is nerve wracking for sure but your schedule doesnt sound particularly unusual. I had to wait a couple weeks before I even got an appt at my first major cancer center and then a couple weeks of gathering scans, data, etc. Your cancer has been evolving for years actually.

Pamper yourself this week. You deserve it.

I'm in such bad shape, I'm wearing prescription underwear." Phyllis Diller 1917-2012

Dx 9/1/2009, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Jan 6, 2012 07:11PM, edited Jan 6, 2012 07:12PM by alesta29

Hi Anko

Sorry you have found yourself here, but welcome.

I had a routine breast scan in May last year and was confirmed with DCIS and a small invasive tumour with lymph node involvement in June. Staging 2 weeks later confirmed liver lung and spinal mets and I started chemo on 26th July so from stage 4 diagnosis to chemo it was around 4-5 weeks.  

I understand the shock and the fact that you just want to get going on chemo. Personally I don't think this seems like a long time but that's just my experience. Do you know what chemo you are going to start with? I had FEC x3 first but had some progression and then Docetaxel x3 and I'm due to have my first scan since finishing in November next Monday.  

There are lots of positive stories out there. Keep hold of hope.

Laurie x 

Stay in the present and live each day as it comes. Stage IV from the get go June 2011. ER/PR+ HER 2- Liver, lung, bone, lymph, brain, peritoneal and pelvic mets - Man this list keeps getting longer...

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Jan 6, 2012 07:46PM china wrote:

So sorry you are here but we would like to offer you advice, hugs, a place to vent, rant and what ever else you feel up to it. I was diagnosed stage 4 at the get go and it took about 3 weeks before I got tmt.I was hospitalized for 10 days and had to have lots of tests, scans ect to determine my primary cancer because they thought I had bone cancer since my tests were negative for a breast tumor. It was too small, less then 1 cm and a spinal biopsy confirmed it was breast. I am 4+ years out and am stable today. There are alot of tmt options. Good luck sending you warm cycberhugs. Dawn

Dx 4/6/2007, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Jan 7, 2012 04:12AM cheryl1946 wrote:

Hi,

Sorry you have to be here,but this site is a wonderful place for info,support,ranting,whatever you need.

I had a suspicious area on mammo,saw surgeon,had stereotactic bx,then 2 core needle bx. Followed those with 2 mri's,an ultrasound of other breast for "lump" that was gone when US was done (it was a cyst that burst).

Then had a PET/cat scan,and finally a cat scan guided bx of my shoulder that showed mets

I have dcis and 2 idc's.

Started in mid April,ended with stage IV dx on July 6. No surgery,radiation or chemo.

On letrozole daily and monthly zometa infusion.

The surgeon I saw said my tumors had been there at least 10 years. But,I am 65 and my cancers are slow growing.

I wish you good luck with your treatment.

 Cheryl

DX 7/6/11 with stage IV at the start;mets to several bones No surgery,rads,or chemo letrozole failed after 17 mos. 2 other hormonals failed; now on to xeloda

Dx 7/6/2011, IDC, 6cm+, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Jan 7, 2012 05:06AM, edited Sep 11, 2012 04:19PM by katie31

This Post was deleted by katie31.

IDC, 3cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+

Dx IDC, 3cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Jan 7, 2012 07:14AM TheDivineMrsM wrote:

I found a lump on December 22. Had a biopsy December 28.

 Learned it was malignant on January 3.  During the month of January, I saw the breast surgeon then the oncologist.  The oncologist scheduled a PET scan as a routine procedure. The scan revealed bone mets.  

I began chemo on February 16th.

I can well remember the anxiety I felt during all the testing, scanning and doctor appointments.  When I was finally given a date for treatment, it was somewhat of a relief. There are very informative threads on chemo on this site.  I learned so much through them.  While you're waiting to begin treatment, you could check out the one that has tips on chemo.  I think it will help you prepare. 

I went through chemo, a lumpectomy, and radiation. I now take Arimidex.  Had a scan in December and am stable. 

Good luck with your chemo.  Keeping you in my prayers. 

found lump 12/22/10~er+/pr+/her2- stage iv bone mets~chemo~lumpectomy~ radiation~arimidex~~Enjoy life more because of the uncertainty not less.

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Jan 7, 2012 08:34AM reesie wrote:

I was Dx on 10/29 and was scheduled for port but pre-admin testing revealed low HBG which required transfusion first. Also had to get rads to humerous and tibia first because of pain. Didn't start cemo until 12/23 so almost two months.

I had extensive mets including liver and lung and showed major regression with scans in May.

Sorry you need to join us here but you'll find a wealth of information from everyone here or just some sympathetic ears when you need to vent.

Marie - It's A Great Day To Be Alive. Dx 10/29/2010 ER+/PR+, HER2- Stage IV mets to bones, liver, lungs, skin, pleural effusions

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Jan 7, 2012 08:39AM sueopp wrote:

Hello Anko,  Sorry to have to welcome you to this club, but what a wonderful group it is - you will find support and hope and laughter here, as well as some really tough fighters.  Thinking of you, and good luck with your treatment - SUE

Dx 12/2010, IDC, Stage IV, 26/35 nodes, mets, ER-/PR-, HER2+
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Jan 7, 2012 08:45AM EnglishMajor wrote:

Hi Anko

I presented with small volume of bone mets, was probably 8 weeks b/4 starting antihormonal tx

Definitely takes some time to get your head around this dx--hang in there 

Dx 7/6/2009, IDC, 3cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Jan 7, 2012 08:48AM Canchaser wrote:

I was diagnosed with stage IV at the beginning of August and did not start chemo until the end of September. With all the scans and tests it just takes awile and in my opinion, is the worst time. I wanted second opinions and so that set my treatment back some too.

Best of luck and hugs, Amy.

Dx 8/8/2011, Stage IV, Grade 3, mets, ER+/PR-, HER2-
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Jan 7, 2012 10:05AM rkt wrote:

Dear Anko,

I was diagnosed June 2, 2008, started first treatment July 4, 2008. I remember being very nervous about the cancer spreading to organs during that interval (I was diagnosed with extensive bone mets at first diagnosis).  Most recently, I had to allow tamoxifen to be eliminated from my system before I started chemotherapy because of liver mets - last tamoxifen was Oct 4, started chemo Nov 4, so almost month there.  Yesterday at first appointment since starting chemo, I told doctor that it really unnerved me being without treatment for a month.  She reassurred me that she was very comfortable with her patients having intervals like that  - she even told me that if I needed to miss or postpone a chemo treatment so that I could go on a trip, that was ok. 

Hang in there - will keep you in my prayers.

Becky

Becky, Stage IV, bone mets, ER+/PR+, HER2-, diagnosed June 2008, right mastectomy May 2009, 0/13 nodes, pleural effusion May 2011, mets to liver October 2011

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Jan 7, 2012 08:39PM KSkier wrote:

Ditto.  The scan that showed stage IV suspicion was July 1.  I think the biopsy wasn't until Aug 12, and I think first treatment was Aug 25 or so.  The waiting is the hardest part.  Taking a week off (from treatment) in February to enjoy the school vacation week.  Stay strong.  KS

Dx 8/15/2008, IBC, 6cm+, Stage IV, mets, ER-/PR-, HER2-
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Jan 7, 2012 08:48PM Glenna_E wrote:

Anko,
Sorry to hear of your bc diagnosis ... Especially just before Christmas. I understand your panic but considering the holidays, sounds like things are moving along pretty well. I was 6 weeks from diagnosis to first chemo. Reading through the responses on the thread, sounds pretty normal. I was also just given a 3 month chemo holiday. I did get a little nervous towards the end and was glad to get back on treatment. You will find lots of love and support on this site. Hugs and best wishes! Glenna

When people asked how old she was, she would say 1009365 more or less because she was so glad to be alive that she counted every day a birthday! (Brian Andreas, Storypeople)

Dx 5/2008, IDC, Stage IV, 11/27 nodes, ER+/PR+, HER2-Chemotherapy 04/11/2011 TaxotereChemotherapy 08/14/2011 GemzarChemotherapy 06/13/2012 DoxilChemotherapy 12/12/2012 TaxolChemotherapy 09/11/2013 Cytoxan, fluorouracil, methotrexateChemotherapy 04/16/2014 carboplatin
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Jan 7, 2012 09:11PM exbrnxgrl wrote:

Long story about skipping quickly from stage IIB to stage IV but except for a bmx, in early September, no treatment until end of November. I was formally diagnosed in July! Had rads to bone met and started Arimidex in late November. Started monthly Aredia infusions in December. It was awful to have to wait so long and feel like I was doing nothing. But, I know now that it didn't change my situation and gave me time for second opinions and a chance to educate myself about bc. Best wishes.
Caryn

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur

Dx 7/8/2011, IDC, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2-Surgery 09/07/2011 Mastectomy (Both); Lymph Node Removal (Left); Reconstruction: Breast implants (permanent) (Both)Radiation Therapy 11/15/2011 ExternalHormonal Therapy 11/21/2011 Arimidex
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Jan 7, 2012 09:30PM janicemarie3 wrote:

I was diagnosed on December 30 2009 and had a Pet scan done on January 6th.  I was scheduled for a mastectomy on January 7th 2010 and was told I was Stage IV I started chemo that day instead. Best wishes.

janicemarie3

Dx 1/7/2010, 6cm+, Stage IV, mets, ER+, HER2+
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Jan 8, 2012 07:20PM Anko66 wrote:

Thank you to everybody for all the replies and such a warm welcome.  You have really put my mind at rest.  I'll update my profile once I have all my test rests (still waiting for HER2 results).  Thank you again and love to all.

Dx 12/16/2011, IDC, 2cm, Stage IV, Grade 3, mets, PR+, HER2+
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Jan 9, 2012 03:30PM anonymice wrote:

Two days from dx to port placement and chemo start (started chemo the same day as port placed, but they gave me the option of waiting a week).  This is just because of the type of cancer with which I was diagnosed, though.  I heard many times that day (to help me manage my expectations re: shock and anxiety) that many people have about a month before treatment started.  So, I believe you are on a good track and can be confident in your medical team's decision.

Dx 9/22/2010, IBC, ER-/PR-, HER2+
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Jan 9, 2012 03:41PM Terry71 wrote:

found my lump myself, had mammo, ultrasound, dx on June 9th, saw surgeon June 16th, had lumpectomy June 22nd with node removal, started chemo August 4th finished Nov 17th, HER 2+ sarted herceptin Oct 7th need for 1 year... Had Left MX Dec 14th and start rads in 2 weeks..... CT scan and bone scan CLEAR, chest xrays clear..... Just had my mapping and tattoo's done the 4th of Jan...... All is good.... Cyber hugs to you and stay positive, stay focused, and SMILE xx

Dx 6/9/2011, IDC, 2cm, Stage IIb, Grade 3, 4/16 nodes, ER-/PR-, HER2+
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Jan 9, 2012 08:33PM scuttlers wrote:

Another IBCer here, six days of scans, labs, and port right into chemo. Realized later what a lucky girl I was to have a doctor/surgeon who was VERY knowledgable in IBC!

My favorite side effect of treatments is BEING ALIVE!

Dx 2/4/2009, IBC, 6cm+, Stage IV, Grade 3, 11/17 nodes, mets, ER+/PR-, HER2+
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Jan 10, 2012 09:07AM bhd1 wrote:

hi anko.  welcome to the boards.  i am new also and have found these boards very helpful.   it is not unusual to wait this long to begin treatment.   your docs can do nothing without full pathology.  this includes results about her 2 status.  i know it is hard,  but try to keep busy before treatment starts.   maybe go out for a nice dinner,  show,  or movie.    all the best.    barb

barb

Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Jan 10, 2012 10:12AM Cafelovr wrote:

I have walked in your shoes! I have a very aggressive BC, Her @+++, ER+, PR-, and I was diagnosed Stage IV with liver mets. My breast tumor was 11 cm, and I was diagnosed 10 months after a clear mammo. Currently, I am NED.

I was diagnosed October 19, 2009 and started chemo November 24, 2009. Once it starts, hold on, because it is a fast ride. You won't stop for quite a while. PM me, and let me know your game plan. Let me know if you have any questions!

Good luck. You have just inherited thousands of sisters!!!

Linda J

Dx 10/19/2009, IDC, 6cm+, Stage IV, Grade 3, 0/2 nodes, mets, ER+/PR-, HER2+Targeted Therapy 01/23/2010 HerceptinHormonal Therapy 07/11/2010 TamoxifenSurgery 05/29/2013 Prophylactic Ovary Removal (Both); Reconstruction: Tissue expander placement, Breast implants (permanent), Latissimus Dorsi flap, Nipple reconstruction (Both)
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Jan 28, 2012 05:13PM Kathy39 wrote:

I was diagnosed February 2010 and started chemo March 2010

Dx 2/2010, IDC, 4cm, Stage IV, Grade 2, 3/10 nodes, mets, ER+/PR-, HER2+