Re: Calling all stage iv sisters
 

Stage 4 as ER-/PR-/HER2+ AND BRCA2+
Anyone else have this charming combo? I was told it's a rare mix. So far I know of two other women on another board with it. Was just wondering if there's anyone else and what you're doing for treatment (I'm too lazy to "search").

Penny

Re: Calling all stage iv sisters
 

What is BRCA2+

Re: Calling all stage iv sisters
 

Re: Calling all stage iv sisters
 

Hi Jackie, I wondered whether I should have my 'membership' updated to NED since my PET/CT results from July scans showed no active cancer at all (just evidence of previous mets, but not sure if that actually means NED)? I just thought it gives a bit of hope to see another NED.... Fingers crossed it lasts a lonnnnnggg time!

Cheers Marie

Re: Calling all stage iv sisters
 

Congratulations! I'm so happy for you!

Certainly. And I've removed the '@' by your name! :)

Re: Calling all stage iv sisters
 

All the best Bunty

Re: Calling all stage iv sisters
 

It's been a roller coaster but it hasn't slowed me down :) Primary dx and 2 lymph recurrences in two years hasn't been fun but it's not all been bad. I've had more time for my two small children, I've had time to work on my dissertation (should be finished by December!!), and I've spent a lot more time doing what I want to do. I've also developed closer relationships with family and rediscovered friends that I hadn't had time for during my chaotic corporate/commuter existence.

I hope and pray that this is it for me--that I beat the odds of the diagnosis and that I'm NED forever. But without this experience I wonder if I would have ever realized how much life I was wasting on stupid things.

Re: Calling all stage iv sisters
 

Calling all stage iv sisters
 

Hooray for you, Cristina! In fact for everyone on this board!!!!!

I tell myself every single day, Remember to say Thank You. I look at the little pewter figurine I have on bended knee, arms outstretched, palms and forehead to the floor -- then I look up, and say out loud -- THANK YOU FOR MY LIFE. I smile joyfully. My voice quivers on the word Life.

Then, I instruct my body and announce to the Universe -- HEALTHY AND WELL. NO MORE CANSER. I do these things several times a day.

That figurine sits next to my sink, on a little onyx colored marble sample as a kind of pedestal. We must all continue to be grateful for every little blessing in our lives. And, just like Carla, I began to notice them more once I was diagnosed. As I found myself with the time to ponder, hug more, receive more love...

Sure our world is turned upside down, but there's a remarkably wondrous side to that too...

Andi

Re: Calling all stage iv sisters
 

Vonny,
I agree...Our Jackie Rocks!!
Thanks again, Jackie for maintaining this wonderful list!
I re-read it every time I need a reminder that I CAN do this...I WILL be a 10, 20, maybe even 30 year survivor someday!
Denise

Calling all my stage IV Sisters
 

Oh gosh, YES. Our Jackie is beyond wonderful to us and for us!! Blessings on your head. http://cdn-cf.aol.com/se/clip_art/pe.../greatest-clip, Jackie. Truly. Genuinely. You rock all our worlds. You keep us focused. You help make and keep us strong. With your living proof list of those who have defied the stats and created new stats...

These days, Denise, I figure -- I'm going for 100. And of course the way to do that is to be a Betty White vigorous and spry. Sharp mind, full of spit and vinegar... Oh and humor. An essential to good health.

I used to give myself mini goals. At 50 when dx, I aimed big -- for Medicare age. Well, I am more than here! I envisioned myself at my first grandchild's Bat Mitzvah (which occurs at the ripe old age of 13). I lived to see her born, but I was picturing myself far, far into the future in vivid detail. And I lived that dream!!!!!!!!!!!! She will be 16 in November.

So, then I started seeing myself at grandchild #2's big day, which will happen next month, in October. And I'm going for GRADUATIONS, FROM HIGH SCHOOL -- AND COLLEGE. I'm seeing myself at WEDDINGS. Becoming a Great Grandmother (a Gigi -- GG, get it?!). Presently, I am a Mima. So, I'm planning.

Don't sell yourSelves short, Ladies. Think BIG...!!!!!!!

Andi

Re: Calling all stage iv sisters
 

Current stats:

Total 130 members* and 651* years 3 months 25 days (and still counting) as of Sept. 18, 2012
@ - members gleaned from other threads (You can use ‘Search’ to locate their postings)

*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...
Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

From NancyL: "Go to http://www.mbcnetwork.org/ and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

Name _____ Er Pr Her2 (Initial Diag) Stage IV Diagnosis ___ Clinical Trial __ Triumph years since StageIV ___ (NED = No Evidence of Disease)

@11yrs5xsr5r (Laurie) __ 1998 Pancreas Peritoneal Lung __ Navel/H, T-DM1, Ixempra, Eribulin __ 14 years and counting
Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung _______T-DM1 ___________ 9 years 2 months and counting
Ahoff (Ann) ________________________ IBC May 2010 __________________________________ 2 year 4 months and counting
Alex1 ___________ Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _____________ 1 year 1 month and counting
Alexandra1('s wife) ___ (stage 3 Dec 2010) Feb 2012 brain (wbr) xeloda and tykerb herceptin __ 1 year 9 months and counting
allielala _____________ Her2+ (July 2009) March 2012 Liver ______________________________ 3 years 2 months and counting
@A. L. Pendley ___________ (1999) 2004 lungs, bone, lymph, 2012 Brain _ H, Ty, X, Xgeva ___ 8 years and counting
AndiBB _____ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver _ Herceptin 10 yrs __17 years 2 months and counting (NED 1999~)
@ Angela ( - NC) ____ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) ___ 5 years 9 months and counting
Angela R _____________________________ (2009) April 2011 ____________________________ 1 year 5 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 ________ 4 years 8 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine ______________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________ 8 years 4 months and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin_______________ 3 years 3 months and counting
Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _________4 yrs 11 months and NED (7-2012)
@Calisa71 ______ Er+ Pr+ Her2+(1998) axilla nodes/bones 2000 _GKRS _ Irinotecan, Tykerb, H, Xgeva _ 12 years and counting
@Caroline96 (Maria) _______________(2003) Dec 2010 lungs, bones ___ XHZ THZ Now HFFZ ___ 9 yrs and NED
@cdbernal (Charlyn) ______________ Aug? 2006 Liver ___________________________________ 6 yrs and counting
Ceesun (Cathy) __________________ June 2006 Lung ___________________________________ 6 yrs 2 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone _________________________ 3 yrs and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _ 1 year 2 months and counting
Chrisy ______________ Er- Pr- Her2+ (June2002) Sept. 2004 Liver ______T-DM1_____________ 8 yrs and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _____________ 6 yrs 11 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________1 year 4 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) _______ 3 yrs 7 months and counting
Dawny _________Er- Pr- Her2+ (May 2011) lung nodes chest + neck Abraxane weekly - 16 weeks Herceptin every third week (Sept 26 NED) 1 year 4 months and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR 2008 and 2009 GKRS ___ 6 years 8 months (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ________________________ 7 yrs 11 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ________________________ 2 year 6 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial __1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 12 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______ 2 yrs 3 months and counting (NED March 2011)
@Dianedack______ Er+Pr+ Oct 2001 2 nodes May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs 4 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung __________ 2 years 7 months and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ______ 10 years and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _________ 2 yrs 8 months and counting (NED till 1-2012)
Emy ____________________ Er+ Her2+ (2001 DCIS) 2010 Lung 2011 Liver ________ 2 yrs and counting
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _______________ 5 yrs 7 months and counting
@fentonlady ____________________________ June 2004 Liver __ Herceptin ______ 8 years 2 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _______ 4 yrs 2 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ___UW peptide trial __ 6yrs 1 month and counting
@Flutterby ____________ Her2+ (2003) 2006 2010 2012 Lung __________________ 9 yrs and counting
@Georgia Girl (Beth) ______________________ Herceptin, Tykerb, Halaven ________ 11 years and counting
@Gracepang ________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _____________ 3 yrs and counting
Hongdo _________________ Her2+ (Sept. 2012) Liver ________________________ "Will get through the long journey"
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _________ 1 year 5 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1_ 7 yrs 1 month and counting
jamlisaann (Lisa) ________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb ___ 6 years 3 months and (NED)
Jacqueline1102 (Jackie) ____ IBC Oct 2011 Liver _____ Perjeta and Herceptin ____________11 months and counting
Jeana _______________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung ___ 1 year 5 months and counting
jkdowl ________________ Er- Pr- Her2+ (Dec 2010 III) Feb 2011 Spine ____________________ NED since Oct 2011
@jml (Jessica) ____ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years 4 months and counting
Joan M _______ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) ___________ 5 yrs 8 months and counting
Joan S. ______________________ April 2007 ________________________________ 5 yrs 5 months and counting
@KaiM ____ Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver________________ 10 months and counting
Kathy T ______ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 yrs 8 months and counting
Kavy _______________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 yrs 10 months and counting
@KayeR _______Er+ Her2+ Jan. 2000 (Stage II) July 2011 Lungs Tamoxifen, Zoladex and H _______ 1 yr 2 months and counting
KDR(Karen) ___ Er- Pr+ Her2+ June 2010 Liver _________T-DM1________________ 2 yrs 3 months and NED
KG1993 (Kim for her Mom) _Her2+ Aug 2011 Bone Liver ________________________ 1 year 1 month and counting
Kim in CA _____ Er+ Her2+ (Feb 1997) Sept 2001 Liver ___ UW Vaccine _11 yrs and counting (6 yrs NED)
Kim in DC __ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum ___ T-DM1 (2 yrs) ______ 4 yrs 7 months and counting
kk1 ____________ Er+Pr+ Her2 _ March 2004 spots on liver ____________________ 8 years 6 months and counting (NED 2009~)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones __________ 1 year 8 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _____________ 1 year 4 months and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _______________ 1 year 8 months and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver __________________ 9 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ______________ 4 years 7 months and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung __________ 3 years 5 months and counting
Lauriesh (Laurie) ______Er- Pr- Her2+ (March 2005) July 2010 2 Liver mets (RFA) _ U of W vaccine _ 2 years 2 months and counting (16 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 years 10 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ___ 5 yrs 7 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ___TDM1 _______ 4 yrs 11 months and counting (NED till mid 2012)
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 8 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 1 yr 3 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ____________ 11 yrs 2 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin ___________8 yrs 2 months and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 1 yr 9 months and counting
@Midwest Alice ____ ER- PR- Her2+ IBC April 2008 Spine ______ Enalaprial for heart ____ 4 years 5 months (NED since 2009)
@MikeF (‘s wife Barb)_____ ER- PR- Her-2 + Aug. 2010 Spine, skin _____ TDM1 ____ 2 yrs 1 month and counting
@MJsHusband (MJ) ____ Er- Pr- Her2+ Aug 3 2010 Liver 2012 Hysterectomy due to mets 2 yrs 1 month and NED
Missyw ______________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _______________ 6 yrs 1 month and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _ 1 year 2 months and counting
@MommieJamieof2 __ Er+ Pr+ Her2+ (May 2012) bone, lung ___ MO27782 (VELVET) _ 4 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ___________ 1 yr 5 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 __________________ 3 yrs 7 months and counting (NED till mid 2012)
NEDenise ___________ Er- Pr- Her2+ (Feb 3, 2011) Jul 23, 2012 Brain ____________ 1 month 10 days and counting
Ninjalyn ___________ March 2011 lungs and chest wall Navelbine/Herceptin/Arimidex 1 year 6 months and counting
No More Tears ____________________ Oct 2010 Spine Chemo Herceptin Zometa _______ 1 year 11 months and counting NED
Nsebesta ________________ (2001) May 2004 Liver ____________ 8 yrs 4 months and counting (NED since 2005)
PAFB _________________ (Jan. 1997) Jan 1998 Metastasis _ Herceptin 12 1/2 yrs till 4/2011 _ 14 yrs 7 months and counting
@Pamelamary (Pam) ___________ Er+ Her2+ (2004) Feb 2012 Spine, pelvis, ribs ___ Marianne ___ 8 yrs and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)__ 10 yrs and counting
PatE _______________________________________ Oct 2007 Liver spine _________ 4 yrs 11 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver _ 2 years and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes _ 2 yrs 7 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________ 6 years and counting
pibikay (Hema) _______ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________ 1 year 6 months and counting
pmoore (Pia) _________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ __ Herceptin ___ 2 years and counting
Radiant (Kim) _____________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes ____ 2 years and counting
@Redwolf8812 (Penny) _____ Er- Pr- Her2+ (July III) Nov 2010 Skin _Parp inhibitor ___ 1 year 10 months and counting
Ricky (‘s wife) _____________________ 2006 Liver ___________________________ 5 1/2 years and counting (3 + years NED)
Rolepaul (‘s wife) __________ (1980’s) 11/2009 Brain (Leptomeningeal), spine ______ 2 years 10 months and counting
Sandra Digilio ______________ (Dec., 2009) Sept. 2011 3 spots in bone ___________ 1 year and counting
Schoolteacher (Amelia) _____ Nov 28. 2007 L4 ____________ WBR ______________ 4 years 10 months and counting (NED 4-16-2008 ~ May 2012)
@Shaysmom (Kelly) ____________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum _______ 9 yrs and counting
Sheila _________ Er- Pr- Her2+ (Feb 2002) Sept 2003 Neck nodes _______ T-DM1(3) _______ 9 yrs and counting
Sherryg683 __________________ Dec 2005 Lungs ___________________________ 6 yrs 9 months and counting
SoCalGal (Flori) ______________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 6 months and counting
StephN _________________ (Sept 2000) Jan 2002 Liver _____________________ 10 yrs 8 months and counting (NED since 2005)
Survivor2be (Andrea) _______ triple – (Sept 2010) 9/2011 Her2+ brain ___________ 1 year and counting (4+ weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________ 5yrs and NED (1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _____________ 8 yrs and counting
teresalynn ____________________________ July 2011 Liver TCH + Femera + Afinitor ____________1 year 2 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far _________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver _______________ Halaven __ 6 years 1 month and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _______________ 22 years and counting
Turbo ________________________________ Lung 2007 ________ Herceptin only ___ 5 yrs (NED)
@Udith7 (Judith) _______________ 1998 Liver _________________ Herceptin _____ 14 years and counting
Unregistered _____________________ Jan. 2007 _____________________________ 5 yrs 8 months and counting
Unregistered (8-25-2011 #106) ____________________________________________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb ______________ 1 year 6 months and counting
Vicky ________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 6 months and counting
Vivienne [Mom of]_________________ March 2011 Liver ____________________ 1 year 6 months and counting
Waterdreamer _________ (June 2008) Nov. 2009 Lungs and bones __ T-DM1 _____ 2 yrs 10 months and counting
Waytooyoung ______ Er+ Pr+ Her2+ (Feb 2010) Nov. 2011 chest wall, Pr- T-DM1+Pertuzumab __ 2 yrs 7 months and counting
@Whonose _________________ Jan. 2007 Liver and bones ___ UW vaccine ____ 5 yrs 8 months and counting (NED since finishing chemo)
Yankeebikachic _________ (April 2006 IIIC) July 2008 Nodes in sup. clav. __________ 4 yrs 2 months and counting (NED since Dec. 2008)

Re: Calling all stage iv sisters
 

I am not stage 4 yet, but am realistic about my prognosis. My question to you... Did you suspect mets because you had symptoms? What kind of symptoms? Or was it found in routine tests? I feel selfish asking this of you, but I wonder about every ache, and am unsure if it is getting older, or my exercise program, or stress, or past chemo effexts or mets, etc. Etc.

Re: Calling all stage iv sisters
 

Hi evergreen
When my daughter was diagnosed with Breast cancer and secondary to the spine all in the same week, she had no symptoms at all. She found a lump in her breast, that was it!! Secondary only showed up on the mri scan, she still doesn't have any symptoms i.e. pain etc. Before she started her treatment she looked and felt a picture of health.....very strange!

Calling all stage iv sisters
 

Hi Ever! Hi Vonny!!

As patients we're part of a team. And what we choose is the result of our gathered expert opinions and our understanding of studies.

I had bld work done ev 3 mnths back in '96. I would compare ea # w/the last time I was time I was tested and w/the normal ranges. In '98 my liver enzymes were "slightly elevated". Docs said, I wouldn't worry about it. 3 mnths later -- same scenario. What could be causing that?, I asked. Lots of things. The statin you take for example. I wouldn't worry about it.

3 mnths later -- same deal. I proclaimed that I was officially worried and asked for a sonogram.

That was approved as something that could be substantiated (to the ever-loving insur co) and that led to the CT scan which led to the biopsy. There were multiple tumors, too many to count, throughout my liver.

I felt great! No symptoms. Healthy and well.


When I was initially dx (in '95) I felt a general hardness in my breast. I could fit this hardness in the palm of my hand. And it seemed to move when I manipulated it. I assumed it was a cyst or the like and would probably require surgery to be removed. It was NOT a lump, a little hard pea or marble as others had described what I should look for in my mnthly self-exams...

I called my gyn who couldn't see me for over a wk. Even though I was concerned! I should have known to push his assistant harder. I learned that after the fact. Sometimes we must speak up. Not yell, but human to human appeal a bit enthusiastically and emphastically. It's okay to do that. It's our responsibility to do that!

I called her back and suggested I move my mammo up a few mnths. She said that sounded like a good idea. She was dispassionate and disinterested I noted.

When I called my Imaging Center they couldn't see me for 2 wks! (I wanted the doc to have as much information as I could gather.) I was increasingly feeling alarmed. My Inner Voice was pushing me. I still felt healthy and well...

My friend suggested I call her Imaging Center. I did, and they said, That's amazing! We JUST had a cancellation! It's for Friday at 4 o'clock. I'll take it!, I yelped.

Turned out to be a 9 cm tumor. The Radiologist was obviously shaken. She did a sono after she read the mammo. She did it twice. Then, she told me to get dressed and meet her in her office.

She told me breathlessly, as I sat across from her, her eyes locked on mine -- YOU NEED A BREAST SURGEON. Ok. Is it a cyst? WHAT YOU HAVE IS A SOLID MASS!!! I wasn't sure what that meant. No mention was made of cancer. But she did offer to call an excellent breast surgeon for me. His name was the same as the one I'd already gathered from friends who'd had need of such of a person.

I never had a lump. Ever. "This" wasn't a lump, a marble or a pea! A solid mass sounded ominious though I had no understanding at the time!

It was then 5 o'clock of 4th of July weekend, 1995. She called and found his office was closed. She turned to me, very anxious, till Tuesday! Suddenly she remembered, I have his home phone number. I nodded. Do you want me to call him? I managed to say, YES. She did and I heard what she said and I was shivering in my boots/heels when I overheard her descriptive words. She turned to me and said, His office is closed till Tuesday -- but -- he will meet you at his office tomorrow (Saturday) if you'd like. Yes!

He opened his darkened empty office just for me at 10 in the morning. I knew I was in big trouble.

I never had any pain. I felt healthy and well, joyful and excited. We'd just seen our 2nd dghtr graduate from Law School, sold our 26 yr old house and found a new home closer to the city where my husband worked. Life was grand... The contracts were signed on Wed and Thurs. And then, our lives turned upside down...

You've all been there. You know...

Somehow we keep putting one foot in front of the other and move onward, forward and upward... as clear-headed as we can possible manage, cause we understand our lives depend on it. God bless you all!

Love and Light,

Re: Calling all stage iv sisters
 

Wow, Andi! That is one impressive story! Thanks for sharing!

Calling all stage iv sisters
 

Ever,

You are not selfish! You are concerned. And rightly so. And we are all here because we want to share our experience, in the hopes of helping others see what we didn't see ourselves before we were far along in this journey. We were newbies, naive in ways medical.

Once dx we must learn a whole new vocabulary. Educate ourselves about things we never had any need or desire to learn about. And now it has become of vital importance for us to grasp so much, beyond the lingo, into the whys, the what ifs, the unimaginable.

It is our honor to serve to reach out to you. Others did so for us. It is now our turn to give back.

Yes, every ache and pain causes clutching worries. What does it mean? Is this something I should report to my doc? Probably yes. Cause she can't read your mind. He shouldn't have to anticipate what may or may not occur.

My friend w/pancreatic ca collapsed in the streets of Manhattan, where she lived, on a weekend. She didn't tell her docs till Monday. She didn't want to bother them. They were upset -- because that's what they do. They are there to help when things turn sour. They are open on the weekends so that when situations arise, they can help.

Collapsing, especially after such an adverse reaction to so many mnths of intense chemotherapies, is serious. You aren't bothering docs with your ailments. That is their job. And they would be the first the tell you this.

I would call and ask, I just want to know if this or that is a normal reaction, cause it is what I am experiencing. I feel doubled over with pain in my abdomen. I feel spacey and out of it. I feel confused and shaky. I feel as if my knees are going to give way any moment. And my docs would advise me accordingly.

Once I said, I know it sounds crazy but even though it's been yrs since I had Taxotere, I sometimes feel that same deep muscle pain in my arms and legs that aches so fiercely I can't find a place for myself. He answered, No, that isn't crazy. A number of my patients report the same thing.

And then the pain didn't bother me as much. It was normal. Others were experiencing the same thing. It was an indication of some good awful problem. A lingering side effects, even yrs later, than eventually did disappear btw.

Never feel guilty asking questions, Ever or anyone on this board. Please. No question is stupid. Or crazy. And you deserve answers!

And Red, I think we could all benefit for sharing our experiences... Don't you?

Andi

Re: Calling all stage iv sisters
 

As Andi said - it can't hurt to ask. I had no symptoms to speak of apart from a change on my skin during chemotherapy (I had stage 2b and w being treated with fec) - thought it was chemo related, it didn't go away and started to change when I had taxotere - I again showed my onc who ordered a biopsy straight away - results more cancer, PET scan following day revealed innumerable small spots in my lungs. I still have spots in my lungs but I have no symptoms - I look and feel (mostly apart from drug side effects) perfectly healthy!
I not believe you can live your life in fear though - information is good but I try to only look at today.

Sharing is wonderful.

Re: Calling all stage iv sisters
 

Hello,
I am new here, looks like I am a stage iv sister are have a 9cm tumour in my left breast, with lymphs involved (don't know how many) and liver met.
I am 42 with 3 children aged 14, 12 & 8 who I am bringing up on my own.
I know I have a long journey ahead but will get through it. I have been very encouraged by all the stories I have read on here.

Re: Calling all stage iv sisters
 

Dx 12/10 stage4 to spine Er/Pr neg her2pos Ned since 10/11