PINK STINKS !!!!

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Catherine's Mom, another Victim...
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Tumor Markers

March 16th
I finally have a little something to add. I guess being in remission since 2004 is something that others out there might find hope from.
I just had therapy for nerve damage. As it turned out, the nerve damage had nothing to do with the tightness in the back of my shoulder and the sharp pains in the chest. I had felt a large lump type area in my chest and was kinda freaked out by that. Come to find out, after several different therapist, it was inside scar tissue. I don’t know if this is something new, but you’re supposed to learn a way to work out the area while it heals. To avoid it healing up wrong. Mine had healed up wrong.
It’s the wildest, most wonderful thing. To have the chest release the tightness in my shoulder.

So, if you notice a problem similar to what I’ve just mentioned. See your doc, and I can’t believe I’m saying this....get therapy.

I've been wanting to say this too. Just because the Onc tells you the bad news. StageIV. Don't die on the spot. I remember one of my choices for treatment was NONE. Where would I be right now had I chose none.

Had I listened to the Lawyer, the reconstructive surgeon, one of the radiologists (all that treated me like DEAD), I don't know? Some doctors don't want to treat you like a real living person. Just doing their job and getting paid.

See This Video Report on MSN about Uninsured and Private insurance comparison. The better insured seem to have a much better chance.

From Linda B.

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Hello to you you all. I entered hospice a week and a half ago due to rapidly increasing lung mets. I am at home on continuous oxygen. I have been having a steady stream of family and wonderful friends coming to see me. I can feel the life slowly draining from me but I am at a peace that I haven't had in a long, long time. For those of you who have to be forced with the decision some day to go to hospice or not, I can tell you it's been a huge blessing. My team of nurses, doctors and everyone has been exceptional. I am not going to go into details but it's something to do sooner, than later when the time comes. I am pain free, have all the things I need brought to my door, even an x-ray machine last weekend. I am only faced with SOB at times, but they are anticipating my needs almost before I can express them myself. I have loved and appreciate you all and those of you who know what's going on with me more intimately will be hearinig from me or you know my number, I just didn't want to leave anyone out so please forgive me for the mass email. To my support group, please stay strong, loving and no matter what anyone else says, true to what you believe, even if it's not always the most popular thought with some people. I still believe that being positive, not Polly-annish but positive gets you much farther, and of course massive amounts of prayers is the key. I'll be seeing you someday, hopefully later than sooner, but I'll be partying down so don't worry about me.

"Death is nothing at all. I have only slipped away into the next room. I am I and you are you. Whoever we were to each other we still are. Call me by my old familiar name, speak to me the easy way you always did. Put no difference in your tone, l wear no forced air or solemnity or sorrow. Laugh, smile, think of me, pray for me. Let my name be forever the household word that it always was. Let it be spoken without effect, without the ghost of a shadow on it. Life means all that it ever meant. It is the same as it ever was, absolutely unbroken continuity.

What is death but a negligible accident? Why should I be out of mind because I am out of sight? I am but waiting for you, for an interval, somewhere very near, just around the corner."

by Henry Scott Holland


Linda B.
http://www3.caringbridge.org/tx/lkbounds/

"The Lord bless you and keep you;
The Lord make His face shine upon you,
And be gracious to you;
The Lord lift up His countenance upon you,
And give you peace."

Numbers 6:24-27

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(I haven't made any updates in a while, during my remission. The best place for new updates about metastatic bc, is to scroll down until you find the link for bcmets.org)

(borrowed from another web site)

Breast cancer is considered cured when there is no remaining evidence of the cancer (called a remission) for a defined period of time, and a woman is able to live out a normal life span. However, it is difficult to define the period of time that must elapse before a woman is considered cured of breast cancer, because this disease can recur many years after initial diagnosis and treatment. For women with early breast cancer, a recurrence is most likely within the first five years after treatment, but can still occur up to 30 years later.

Cure is possible, but uncommon in women with metastatic breast cancer. Although treatment occasionally leads to a complete remission, further tumor progression is prevented for prolonged periods (five to ten years) in only 2 to 5 percent of cases. These women are long-term survivors who are possibly cured of their cancer.

Prolonged survival — Despite the disappointing cure rate, treatment most likely prolongs survival in women with metastatic breast cancer, although no study has ever compared survival in treated versus untreated women. The average survival duration for women treated for metastatic breast cancer is 18 to 24 months, but the range of survival extends from a few months to many years. Survival tends to be slightly longer (by months rather than years) for women whose cancers respond to treatment, compared to those who do not respond (nonresponders).

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This is Karen Lenhart on the Left and Jeanne Turner on the Right. Both are gone now and will be greatly missed....

Karen Lenhart passed away on 9/13/06. Some members said they believe they even felt her presence after she left. The day of her death, I was depressed and I think I kinda knew too because the thought crossed my mind for some odd reason. Anyway it would be just like Karen to continue love and support from where she is now. She will be missed by so many. She was on the phone constantly with others. She traveled to visit friends from the support group and other ladies with breast cancer. She spear headed the BCMETS Crisis Fund which is still running and being lead by some very caring individuals. More info on that will be post shortly. Prayers go out for her Mother, Salley and son, Andrew. Karen, I hope you are still with us because we love you so much !!!!!

There is a test out now, pretty new, that checks the blood for metastatic cells in the body. If you've ever had Breast Cancer, no matter WHAT stage, talk to your doc or onc about getting this test. There is currentally NO CURE and that means yours can come back. I've talked to too many ladies who did have it return at every stage of it. If you know someone who has or had breast cancer, pass this on. I will post the name of it as soon as I find out. Spartanburg Cancer Center in SC call it the "Cell Search" test. I got the test and it shows I'm still in remission or NED (no evidence of disease)

Click Here For An Online Support Group BCMETS.ORG

(this was sent to me from Karen to use on the web site, thank you Karen for sharing!!!)

It is from a medical researcher who posted on the young survivors boards.

I'm an medical researcher specializing in breast cancer, and author of the Breast Cancer Watch site, which publishes evidence-based systematic reviews and critical appraisals of the latest breast cancer treatment research findings for use by patients, co-researchers and clinical oncologists at many leading cancer centers; as also a member of the European Association for Cancer Research (EACR) I have been undertaking a systematic review of therapies for bone metastasis of breast cancer, so perhaps I can help clarify some of your options.



Radiopharmaceuticals

There are two radiopharmaceuticals (drugs with radioactive elements) that are viable options here, both with the activity of emitting radiation to kill bone cancer cells as well as relieve a good deal of any pain associated with bone metastases:



1. Strontium-89 (Metastron)

2. Samarium-153 (Quadramet)



Radiopharmaceutical therapy is preferable to standard external beam radiation (EBRT) in cases in which cancer has spread to many bones, since EBRT would require trying to aim at each affected bone. The major side effect of radiopharmaceutical therapy is a lowering of blood cell counts but this is within manageable range. Radiopharmaceuticals provide several advantages over conventional external beam radiotherapy (EBRT):



+ they can treat multiple diffuse sites

+ they cause fewer adverse effects, such as nausea, vomiting, diarrhea, and tissue damage;



Strontium-89 (Metastron)

About 80% of patients with painful bone metastases from breast cancer experience some pain relief following strontium-89 administration, with as many as 10% or more becoming pain free. The duration of clinical response averages 3 to 6 months in many cases, with pain relief usually appearing within 1–3 weeks after treatment, and with only mild hemotoxicity. More importantly, patients treated with strontium-89 appear to develop fewer new sites of pain, and also attain improved median overall survival.



Samarium-153 (Quadramet)

Similar positive results have been obtained for samarium-153 (Quadramet). With samarium-153 pain was reduced to less than 50% of basal levels in 76% of cases typically with reduction or elimination of opiates for pain seen in all patients. Like strontium-89, there may be a "pain flare" phenomenon within the first 2 - 3 days of treatment, but this is usually mild, self-limited, and controlled with analgesics. The main adverse effect, hematotoxicity, is transitory.



Other Options

A possibly surprising and valuable finding at the 27th San Antonio Breast Cancer Symposium (SABCS) was that a high proportion of symptomatic patients with AI (aromatase inbitor)-induced joint symptoms have inadequate vitamin D levels; the good news was that in these cases simple vitamin D supplementation significantly improved these joint symptoms.



Fulvestrant (Faslodex)

My view, backed by research evidence and experience, is that it is seriously underappreciated by patients, and amazingly, by most oncologists, just how effective and favorable fulvestrant (Faslodex) is in the arsenal of endrocrine breast cancer therapies: the latest research, including my own recently completed systematic review, found it to be at least as effective as both tamoxifen and all three aromatase inhibitors, and probably better, an opinion shared by the some of the world's top oncology experts like Dr. William Gradishar, Dr. Gabriel N Hortobagyi, Dr. Adam M Brufsky, Dr. Gerson Locker, Dr. Stephen E Jones, and Dr. Charles L Vogel, as they all indicated in recently conducted interviews which I summarize on my site. Here's a quick overview of the relevant facts on fulvestrant:



At least as effective as tamoxifen and aromatse inhibitors, probably better
High tolerability with minimal toxicity (and, yes, a "pain in the butt' injection)
Lower incidence of joint/bone disorders

Time from onset of response to disease progression is significantly greater than anastrozole (Arimidex)

Trend in overall survival over anastrozole
Possibly longer duration of response than AIs

Patients with visceral disease are more fulvestrant-responsive
No androgenic side-effects (like viralization, weight gain, alopecia)
Can be used for:

(1) tamoxifen-resistant breast cancer,

(2) premenopausal (including HER-2-positive) ER-positive patients, where AIs cannot be used

(3) hormone receptor-positive women with advanced / metastatic breast cancer

(4) prevention of breast cancer in high-risk patients



Switchable from, or to, tamoxifen and AIs

Considerably more affordable than AIs



Finally, let me add that Dr. Gabriel N Hortobagyi (Chair, Breast Medical Oncology at M.D. Anderson Cancer Center) feels that trials of fulvestrant underestimated its efficacy, given that the dosing schedule used was probably too low; he states his own clinical practice of administering loading doses of 500 mg of fulvestrant followed by 500 mg two weeks later and then 250 mg monthly, and believes that given such more optimal dosing, fulvestrant is likely to be proven superior to the aromatase inhibitors, an opinion I share and which my research findings attest to.



I hope I have clarified some of the questions and issues you raised, and, all told, I think you have some hopeful and quite promising options. You can consult the full discussion of this research on my site (Breast Cancer Watch), with all the confirming studies, and of course let me know if I can be of any further assistance.



Good luck to you! Constantine Kaniklidis Medical Researcher in EBM (Evidence based medicine



Breast Cancer Watch



Breast cancer prevention Watch



edge@evidencewatch.com



The radiopharmaceuticals are administered simply as a standard injection into a vein (IV), usually in the forearm and are usually uneventful.



Fulvestrant (Faslodex) on the other hand is a serious 250 ml. intramuscular injection (IM) into the buttocks (more precisely, the right or left dorsogluteal site or the upper outer quadrant of the buttock), using a SafetyGlide needle. Administration requires some skill, but field experience suggests using a special optional (but I would add, strongly advised) Z-track technique. Z-track minimizes any tissue irritation at the site, and therefore subsequent pain by sealing the drug within muscle tissues, preventing the solution from seeping into the subcutaneous tissue (this is positive, since fulvestrant is very viscous and any seapage into subcutaneous tissue is what often causes the irritation): Z-track has the patient in a side-lying position with the injection given at a 90-degree angle directly into the muscle, or an alternative is having the patient stand pigeon-toed leaning over a table during the injection. Although optional, clinical field experience shows that the Z-track technique (it's documented in a special Nurse's Slide Kit available from manufacturer, or you can web-download it yourself [as a pdf]: Fulvestrant: Information for Oncology Nurses) can dramatically reduce the likelihood and degree of any pain or irritation.



And you're rigfht that Emla cream can help further reduce any local pain or irritation, although let me float a couple of tips: vapocoolant spray (brand name: Fluori-Methane) appears to be somewhat more effective, and a lot more flexible, since it can be used immediately (and repeated) and on-demand, while Emla is dicey, requiring administration no less than 60 minutes prior to injection, and can't be for that reason repeated. Even better: Emla 60 minutes pre-injection AND then vapocoolant spray at injection time, appears to work some magic in avoding any appreciable discomfort. You may be able to pre-arrange having the Flouri-Methane on hand, possibly even arranging to go home with it.



And combining the Z-track method with pre-IM Emla and injection-time (and post-injection) Fluori-Methane should make this an uneventful and routine monthly procedure.



Now let's see what you Onc says - good luck!



P.S. In case your Onc wants to speak directly with Dr. Gabriel Hortobagyi at M.D. Anderson concerning his own front-loading approach to fulvestrant and experiences,

he can be contacted at:

Tel: 713-792-2817

(or by email: ghortoba@mdanderson.org)

________________________

Constantine

Breast Cancer Watch

edge@evidencewatch.com













Let me add my voice to Jouliette's sentiment of hope, although I can't improve on her _expression of it!



There are emerging breakthroughs virtually daily in this arena that is showing tremendous research activity: so, adding something as simple as a COX-2 inhibitor like celecoxib (Celebrex, 400 mg twice-daily) appears not only to provide significant pain relief, but to also have the potential to limit the progression of osteoblastic bone metastases (leveraging the now established apoptotic and antiangiogenic - that is, antitumor - activities of COX-2 Inhibitors). (And note that optimally standardized-component over-the-counter preparations of curcumin, ginger and gingko have exhibited significant Cyclooxygenase-2 inhibition, making them "natural COX-2 inhibitors").



Also zoledronic acid (Zometa), as well as clodronate (Bonefos), and the newly released oral bisphosphonate ibandronate (Boniva) are displaying some signficant antitumor activity of their own, in addition to their beneficial effects on osteoporosis and bone pain. Similarly, melatonin has been demonstrated to exhibit significant breast cell antiproliferative activity, in addition to reducing the toxicity of radiotherapy / radiation.



And innovative research out of China is beginning to show a remarkable synergy on bone metastasis control between the bisphosphonates and radiopharmaceuticals, with many other promising developments pending in the very near future, and I have been and will continue to report on these, and the frontier edge of breast cancer research on almost a daily basis.

So - no shortage of hope. Constantine Breast Cancer Watch (web site) edge@evidencewatch.com



Now, although BMTs (bone marrow transplants) and SCTs (stem cell transplants) were widely deployed during late 80s and through much of the 90s, these therapies are rarely administered since then, in large part because, as Dr. Eric Winer, Director of the Breast Oncology Center out at the Dana-Farber Cancer Institute has correctly pointed out, more recent clinical evidence shows that comparable or superior outcomes are attainable with less radical and less toxic optimal endocrine therapies, often coupled with metastasis-slowing bisphosphonate therapy, and even highly selective chemotherapy as needed.



New and highly promising options are appearing rapidly in this aggressively researched arena. I'm following closely the impressive results of additive COX-2 inhibitors like Celebrex, which I briefly noted above, that appear to influence the slowing regression of bone metastasis and show some antitumor activity of their own.



And research coming out of Japan's advanced institutes, and elsewhere, has focused on HD (high dose) Toremifene for the treatment of advanced MBC (metastatic breast cancer). Toremifene (Fareston) is an FDA-approved antiestrogen related to Tamoxifen and shown to be at least as effective, but which appears to be deployable in high doses, is effective after both Tamoxifen and aromatase inhibitors (AIs), and may have specific activity in bone metastasis: a remarkable recent case study used second-line HD-Toremifene administration (120 mg) in a case of advanced MBC with multiple bone metastases of the spine, and after 6 months not only was the CA15-3 tumor marker normal, but bone metastais had disappeared. And monoclonal anitibodies targeted at the regulation of bone metastasis are now under several clinical trials and showing preliminary promise, including the near development of a "RANKL vaccine" that inhibits the bone destruction of the bone metastasis process.



As these and other developments are reported, I will incorporate them into my systematic review of the subject and post them to the Breast Cancer Watch site, and I'll be glad to summarize them here in parallel.



Wishing you the very best fortune on the scan results and feedback from your oncologist!

________________________

Constantine

Breast Cancer Watch

edge@evidencewatch.com











*********************************************************
Sub-cellular accumulation of magnetic nanoparticles in breast tumors and metastases.

Zhou J, Leuschner C, Kumar C, Hormes JF, Soboyejo WO.

Department of Mechanical and Aerospace Engineering, and Princeton Institute for the Science and Engineering of Materials, Princeton University, Princeton, NJ 08544, USA. zhou5@llnl.gov

In this study, the sub-cellular accumulation of superparamagnetic iron oxide nanoparticles (SPIONs) in breast tumors and peripheral organs were investigated. MNPs were conjugated with luteinizing hormone releasing hormone (LHRH), whose receptors are expressed by most types of breast cancer cells. After the nanoparticles were injected into female nude mice bearing MDA-MB-435S.luc tumors, the mice were sacrificed to collect tumors and peripheral organs for biological and TEM analyses. LHRH conjugated SPIONs (LHRH- SPIONs) were found to accumulate in cancer cells, mainly in the primary tumors and the metastatic lungs, where they aggregated to form clusters. In contrast, most of the unconjugated SPIONs were collected in the liver cells. The results suggest that LHRH- SPIONs can be used to target cancer cells in the primary breast tumors and the lung metastases. TEM is also shown to be a useful tool for the studies of sub-cellular distributions of SPIONs in tumors and tissues.

PMID: 16280161 [PubMed - in process]
*********************************************************

Click Here if you are a Parent with Cancer

The original Kids Konnected was formed in 1993 as Komen Kids by then ll year old Jon Wagner-Holtz after his mother was treated for breast cancer. At that time there were no programs where Jon could talk to other kids that knew what it was like to have a sick parent. So Jon decided to change things by starting his own hotline to help other kids going through similar situations. And that's how Kids Konnected got started!


Since then the Kids Konnected program has operated under the premise that when a parent gets cancer, the entire family is affected and the needs of the children must be addressed. Our program started in California and soon spread nationwide. Find a location near you!

In 1997 Kids Konnected became it's own non-profit corporation to better facilitate growth. Jon says, "The success of a program lies in the tears of a child being wiped away by a caring friend and in the quiet 'Thanks' of a sick parent that can worry less about the emotional stress their illness has on their children." Kids helping Kids is what we're all about. Because of our "Konnection" you don't have to be alone anymore.

NBCC: National Breast Cancer Coalition - Grassroots Advocacy in Action

I had an aunt (not blood relative) that was dx at age 40, 10 years later she had mets, she died at 72. I think she had the world record on chemo. I do not think I can do that, but I really do not think age matters as much as the health we are in. - Ada

Click for more info (ACS) and to fill out letter...

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Click on Photo to go to Memorial Page 2

Rita !!! We're going to miss you !!! She got to meet some of the Metsters and I'm sure they'll miss her the most after getting to spend time with her and getting to really know her on a more personal level. My Belief is that we'll all get to meet one day and I hope we don't get 'thrown out" for causing too much trouble.....

Having trouble affording those Meds? There's a link below sent in from the online support group. I know nothing about this program or if it's legit, I'm just offering it for you to visit and check it out for yourself.

Click here for Help getting Meds

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Made for Website by Rhonda, that SweetGalinTexas

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2004 BCStage4 BC Car Ribbon

The “black color” of the bars

represents all those who were lost

to Breast Cancer

and to honor them in our memory

1ST BAR : EDUCATE (share your wisdom)

2ND BAR : NO CURE (Remission is NOT a Cure)

3RD BAR : HOPE ???

4TH BAR : STAGE IV "Does Exist"

and it’s Spreading...

Susan J. Andrews

This Ribbon Has 4 Bars Representing Stage IV Breast Cancer

 I put this site together to be helpful, funny, serious, tearful, inspirational and to get the word out.  One day there will be more awareness leading to treatments or a CURE for Metastatic Disease.  There are many with BC at End Stage IV.  The clock runs out everyday for some of them...
 What Do We Do !!!

click here to play video

Click here to look and or add some photos to a MetsSister's Site (started by Susan H. from Canada)enter BCBeauties as member name, bcmets is the password to add your photos or to edit them.

Stage 0, Stage II, Stage III and Stage IV, Has your Onc told you about Recurrence?

You Found this Web Site. You either have BC, had BC or know someone that does or did. This site is devoted to Stage IV Breast Cancer. The Cancer was either Diagnosed at Stage IV or from Stage0 to Stage III, it came back as Stage IV. If you think Stage IV isn't a concern for you, think again. An estimated 40,000 women and men will die this year from it. Some of those started at earlier staged Breast Cancer too. Some of them didn't know it'd come back. Yes, it definitely can come back after 5 yrs. You don't have to believe me, just go to BCMets.Org and find out for yourself. This is a support group of men and women from around the world. Jump on in and ask a question. You really do need to at least find out what the signs are for recurrence. How often you should still be getting checked. There is no cure, just remission. If there was a cure, I wouldn't have to write this and you wouldn't be reading it......Susan Andrews

{Comments Sent to the Web Site}

I'm stunned to see the high % of Stage IV primary diagnosie's.( is that a real word?) I had a simple dry cough till that xray attacked me! Dawn

I went from Stage I to Stage IV in 4 years; do most people going from I then II then III until they get to IV?

normal mammo three months prior to finding a lump, dx stage IV 2 months later

Recent mammogram. No problems! Itchy rib, x-ray, CT, no diagnosis on lung, PET, lung OK, but you have BC! Surgery, chemo, radiation. Forgot all about that itchy rib.

By the time I found my lump, the cancer had spread to my liver and bones. I'd been on HRT for three years and my gyn said it would be "a fountain of youth." Some fountain.

I had a mastectomy with adjuctive chemo CMF. There were no nodes involved but I still developed Stage IV.

I could have been saved but gp told me I that my cough was seasonal allergies, and gave me claritan and cough medicine for 1 year.

I could have been a 2 but got blown off by the doctor, but less than a year later I had mets to chest wall.

This bear that Julie is squeezing, I had sent to Karen L. Karen called me and told me that she passed it on to Julie so that maybe it would give her some comfort, that she really needed more than she did. Maybe Julie will Get All Better, and be able to pass the bear to somebody she knows might can use his fuzzy comfort too. Susan A.

Julie getting Radiation with her new friend.
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I thought this picture was bitter sweet. We Love Ya Julie !!!!

Having lost my daughter Amy to breast cancer< I felt a need for a place that mothers who have lost their daughters to breast cancer, can come and share their unique needs. http://www.bcmoms.com If you know of anyone who might be interested I hope you will let them know. Thanks, Jean

(I Wanted to post this on the web site because it sums up the way many of us feel that are at stage IV, and it's the way any other person with BC should know and feel too.) My Amy was diagnosed at 27, breast fed, ate well, had her kids in her 20's, no family history.....when I speak to groups, as a breast health educator, I certainly speak of all the young women I have known of with B.C. Md's also need to be educated and I don't 
worry if I scare anyone about the fact you are always looking over your shoulder, when you have had B.C. You NEVER know when it will come back. There is NO CURE. Why doctors continue to let women think that 5 years NED =Cure, or that you are too young to get it, is beyond me. I have a friend whose daughter was diagnosed at 21 and died at 24, I know of several diagnosed in their teens. Women SHOULD BE SCARED, as scared as they are of aids, maybe then we'd be more vocal and there would be that cure! The last 
article that I did for the local paper was a risk for the reporter , not pink and cute, but telling the truth in Amy's journey....... Well that's my rant for the day, we need to shake the rafters, that's why I belong to Hurricane Voices, not pink, not cute! Jean

What is Metastatic Breast Cancer:

For five years regular tests came back clean. Then, the day before Thanksgiving last year, she learned of the recurrence."Five years had passed, and I had put ;it out of my mind." The cancer had spread to her bones, primarily in the spine and pelvis. - Pick

Many of us with advanced breast cancer dread October, with its perky pink ribbons, discussions of 'beating' breast cancer and doing so by being positive, ending treatment and getting on with life, as though even for those who never have a recurrence it is simply a temporary inconvenience. Those of us who face a shortened life span and continuous treatment for all of the time that remains find it incredibly frustrating that eagerness to get people in for testing and early diagnosis causes us to overlook the 'other' side of breast cancer. -Myra

I don't want to scare people to death, but our reality is certainly a large part of the BC picture and few of us expected to end up with stage IV. I thought if I ever got bc I would just have it lopped off! I think the stories of all the wonderful sisters who have been on this list and died need to have their stories told. Without the pink pompom rah rah girls bouncing about.

Peace, Pam



From: senga

Date: Wed Oct 06 2004 (Last Oct)

  The other dark side well apparently people don't like hearing bad news stories apparently they don't sell papers or magazines so we are left to struggle on making life and death decisions searching the internet for anything that we can find with the grim reaper hanging over up all the time Having good days when we see our kids/grandkids having bad days in our dark holes. Going for more treatment more hope getting treatment and saying yes it's working or sometimes no it did not work that time picking ourselves up and starting the whole dam thing again or dying and having people send us their prayers and wishes and hopes and maybe they work for a little while and maybe they don.t. Always knowing someone that is fighting for their life or in hospice dying always hoping it won't be you that gets posted to the list with Sad News as the headline by some grieving relative That's enough just to reiterate it is about time those out there realize that there is b.c. and their is B.C. Senga . .

I gradually came to realize that five-year survival doesnt mean walking off into the sunset cancer free. Five-year survival includes women like me still here fighting metastases for two years. -Debbie

I just found out last week that I have some metasasis in my left pelvic bone and right lower lung. It was discovered because I was experiencing back pain so a PET scan was ordered along with a bone scan. When I was first diagnosed, I was told it was stage II and that I found it early enough.I used to belong to a young survivors group which had about 15 or so at every meeting. My first diagnosis was Stage II and welcomed with loving support in the group. When I announced the Stage IV dx, suddenly the numbers in the group dropped. One of the members said it was too sad to be around people with recurrences or stage IV so she quit coming. I felt like I had the plague or leprosy, so I quit going. Even the director of our Breast Resource Center resigned because she wanted to get away from cancer. I wish I could do the same!

-Karen in California



Wed Jul 26 2000

I was originally diagnosed as a stage II, but I might have been a stage IV. I had requested a CT scan to see if I had mets and I was refused. "your ;lymph nodes are clear and we're 98% sure we got it all....besides, a CT is ;really expensive and the insurance company won't authorize it".....yadda, ;yadda, yadda... -Charon

****There are women that have reported no lymph node involvement yet the cancer spread anyway. SA

It is a very lonely place to be. Besides having to come to terms with our own mortality, others have to come to terms with a changed perception of you and their future as well. I was dx'd stage IIb which I know was wrong. Eventually, my dr. changed the stage to stage III. However, now that I understand what bc is all about I am quite sure that I was at least in the early stages of stage IV- I feel like I am lost in the wilderness-helicopter circles over me--but it doesn't see me. What is happening to me--"living hell." I am at a point where I am amused at whatever else comes along--and am waiting for 'what's next.' It can't be any worse than what I have already experienced- vascular invasion--which means that the b.c. can metastasize to just about anywhere. So when something is going on--do you think they (dr's) look for bc mets like they should be doing--NOPE--send me to rule out everything else first--which they never do. I was also I am so angry and tired of the mis-truths and all that they (now radiologists) are allowed to get away with. Why??? Because metastatic b.c. is expensive to treat and I am with an HMO, albeit a non-profit one. Oh, and the scans--they ARE doing the scans--on the same machine at the same facility --BUTTT they cannot be compared. WHY??? Because each is done on a different setting. When asked why, they can't give a reason-turned slightly This is 'The Game of Breast Cancer.' anyone with aids can get the drug, if not for free than at a nominal price--i.e. 53 cents per dosage. Is that happening with breast cancer. Nope--one injection of Neulasta costs anywhere from 4 thousand to 6 thousand dollars--that is just one shot! Then there is Zofran--where some are not even allowed to have that as an anti-nausea medication because it is too expensive. Then there is the fact that my dr's have suggested that I have chest wall recurrence-Local recurrence is still curable if one gets the 'right' treatment. I was told I couldn't get more radiation since I already had it??? So, here I sit--writing about all these frustrations...since nobody will take on anyone for an honest 2nd opinion with the type of insurance I have. It doesn't even matter that we have paid out-of-pocket for these evaluations and would pay cash for the treatments. -(?someone from BCMets.org support group)

comment: Susan, your site is incredible.  The memorials are a testament to the courage these women have shown.  My sister, Karen, was diagnosed with ibc two years ago.  She has been great considering all she has gone through.  Our younger sister, Susan, had so many high risk factors, she is on a five year Tamoxifen routing.  Without this site and the ibc support and bcmets, I would be lost.  The information has been
invaluable to me and I share it with her often.  Finally, I've even gotten her to search the archives!!  Bless you.

Big Sis,
Stella, Long Island, NY
 
Thank You Stella for the compliment. Pete and Musa on BCMETS.org are the ones that really deserve that credit. I'm glad you found information that is useful. When I was first diagnosed with BC Stage 4, my biggest gripe was searching the internet and not getting the answers to my questions. Every web site almost seemed to repeat the same vague info.  Nobody wanted to touch some of the topics that we discuss on the support group or posted here on the web site. I guess this web site is becomming what I've always wanted it to become.  Informative, directive, hard truth, non of that sugar pink coating, a place to vent, be pissed, laugh and find comfort in support. - web slave, Susan Andrews

My Niece Toni
tonic.jpg
holding my Car Magnet, more Magnets will be ordered soon...

Click on this link: Metastatic Breast Cancer as a Chronic Condition

Just Because You Have Stage IV Breast Cancer Doesn't Mean "Give In !!!"
There are finally some real good treatments to choose from.
All you have to do is Ride Your Onc's Ass and get the RIGHT ONE for you and Raise Hell with the Insurance Companies!!!
 If He or She Doesn't Give a Rat's Ass about you, Find One That Does. Ask other Women who they have and how they get treated. How are they doing with thier Onc's Plan of treatment?  Don't Fall Victim to Insurance Companies !!!
It May not be the Cancer that Kills us, but the BS...
 

 

"I think it might help if you let your doctors know that you want the BEST treatment and timely scans regardless of insurance company guidelines - even if it means paying yourself (which you could possibly contest). And, in the US, in almost all medical care, you can pay off huge bills in small monthly installments."- Beth S.

From the American Cancer Society's figures for 2005:
This year 570,280 Americans will die of cancer.
 40,870 Men and Women will die with Breast Cancer

This site is put together with the help of my online support group friends. Without them and their "real" accounts and stories, this site would be like a lot of other generic sites. This Site holds many of the TRUTHs about Breast Cancer.
-Susan Andrews

Me, Susan A. with Scooby and Shaggy
mescooby.jpg
at Universal Studios in Florida

Click For Clinical Trial Info Site

Click to Go to Lance Armstrong Web Site to Order the Live Strong Wristband $1.00ea

Breast Cancer Incidence Rates Over the Years

1940

 

1 in 20

1969

 

1 in 14

1975

 

1 in 11

1994

 

1 in 8

2004

 

1 in 7

  Risk from Hurricane Voices

:: The single largest risk factor for breast cancer is simply being a woman. All women, therefore, face these realities:

  • There is no known cure for breast cancer.
  • There is nothing a woman can do to ensure that she will not get breast cancer.

:: An overwhelming majority of breast cancer cases, approximately 90% to 95%, are not caused by genetics. More information on genetics and family history.

:: The lifetime risk for breast cancer diagnosis has steadily increased over the years.

:: There was a 40% rise in breast cancer incidence rates from 1973 to 1998. The cause of this increase is still unknown.

 

                                                

htmlGEAR.com Poll
What Stage Was Your First Diagnosis?
 
Stage O 1 (1%)
Stage I 3 (5%)
Stage II 17 (29%)
Stage III 13 (22%)
Stage IV 23 (40%)
57 Total votes
(These are some of the results)

htmlGEAR.com Poll
What Stage Was Your First Diagnosis?
 
Stage O 2 (2%)
Stage I 7 (8%)
Stage II 21 (26%)
Stage III 17 (21%)
Stage IV 31 (39%)
78 Total votes
(Looks Like Stage II and Stage IV are most popular)

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