Hi everyone,

 

I am not new to this site but have not posted much. I read everyday to see if I can find someone who is experiencing what I have.

 

I am still having side effects from Taxol and it will be one year on 8/30/08 that I had by last chemo.  I wake up with pain in my calfs and feet during the night and sometimes by fingers.

I still have shooting pains under my breast where my incision is from the lumpectomy and breast bone on occasion.  My surgeon says it could be permant. I am very tender in spots under the breast but at the same time numb where the nodes were taken out. I passed my mamogram with flying colors in March and I am scheduled for a MRI next month. My surgeon has put me on 6 months check up visits but my ono still has me on every three months.

 

I do not see many posts from people who are 2 or more years out with TNBC but I am guilty of this myself.  If there is anyone out there who is only reading and still ned after two or more years please it would be helpful to hear from you.

 

Joyce

 

I found my lump in Jan. 2001. That makes me almost 8 years out !

 

I had posted recently about having a massage therapist "work" the scar area. I would get scar tissue from the axillary scar to the lump scar, which would casue pulling and uncomfortable sensations. A good therapist can manually work this area, diminishing the scar tissue. You know there is real trust going on when you let them do that !

 

I had a lot of range of motion issues with my shoulder. I did massage, accupuncture, excersizing and pressure point therapy to relieve all this.

 

By now, most everything is a memory.

 

Every day that goes by without hearing a doctor say those words we fear -- "It appears your cancer has spread to......" --- is an EXCELLENT day !  

 

I've passed my 2 yr mark and sailing right along, NED.  My first year was truly a "year from hell".  After my dbl mastectomy, instead of going on into the chemo regeime as scheduled, bad luck or fate or destiny took me down a path of systemic MRSA and almost death, on to heart issues and a triple bypass.  My onc declared chemo was too risky to mix with recovery from the infection and heart surgery. 

 

I'm totally dependent on the dbl mastectomy to have been enough to rid me of the TNBC.   I'll continue to be scanned every 6 months, but honestly, I don't think it'll come back.  Famous last words maybe, but I just don't expect it.    

 

I feel good now, working full time, love my job, looking forward to retirement so I can piddle with my machine embroidery, sleep late and read those cheap novels.  

 

Just keep on keepin' on --- deal with the situation as it is today and don't waste your energy or time on the 'what ifs'.  Life's a good thing !

 

Jessie   

 

 

 

     

     Shame on you to say that you are using a machine to  embrodery.HeHe!!   You know,I used to picture myself,after retirement,as I grow older and older,sitting in my recliner doing a little hand embrodery.

    No one told me that every time I get into that recliner ,for some reason,my body thinks that it is suppose to take a nap and the hands no longer seem to work as they used to.I once made a queen size quilt ,sitting in my recliner,and all by hand.I long for those days again,but I am sure that they are not to be.For some reason,I cannot seem to stay away from my computer,connecting with our beloved foundation.

   I had an oppurtunity to get a machine to embroidery at one time ,but I was afraid that I would not be able to figure out how to use it.But I also, not to long ago ,did not know the first thing about a computer,and here I am.

  If, it is your intention to embroidery on your machine after you retire,then you are going to have to put yourself on a strict schedule.Miss Pam and I have discussed so many times how when you connect to the foundation,that a whole day will go by and you will still be in your jammies.Why take them off to get right back into them.(just joking,but I guess we could do as Nance(Nancy) does,she leaves her computer connected to the foundation while she goes to take a shower just to make sure that she does not miss anyone.)OK Jessie after you retire keep us informed about all of the beautiful things that you get completed on the embroidery machine.Maybe you could choose 1 day for the machine and then the next day for the foundation.I will be very much interested in how you are able to get this done.I used to sell on ebay,and I made pretty good money,but then my world was consumed with the big C word and I just cannot seem to stop trying to give back to a wonderful gathering of angels that allowed me to come into their world.

    Bless you Jessie,you are a wonderful inspiration to so many each time that you post.And this foundation ,I am sure, will be willing to share your time with a machine after retirement.Lots and Lots of Huggggggsssssd     Billie

 

These gals are out there.

 

They are just not on the sites, because they don't have the time....they are too busy living life to the fullest!

Nancy

 

The Peripheral Neuropathy can come on anytime, sometimes months or a year before it hits us if it's going to.

 

I was recently diagnosed with this by my family doc so they put me on the same med you have now.  I didn't find it helping so have increased what I take at night because it can make you sleepy, especially when you first start taking it.  After that I didn't get sleepy.

 

Right now the bones in my feet are hurting so bad that I hate to walk and when barefoot around the house walk flat footed half the time and slow!

My whole body is beginning to hurt in my bones on top of my joint arthitis which I know gets worse in the cooler weather.  I wonder if Peripheral Neuropathy is also affecteed by weather?

 

I did get good advice on better shoes which has helped.  Billie has helped me so much with this Neuropathy thing. 

What a jewel she is!

 

 

Recently I have been dealing with a real increase in neuropathy in feet, climbing up legs, now hands, sometimes my head feels really fuzzy.  Trying acupuncture and B vitamins as first line of treatment.  Yesterdays appointment with acupuncturists(also an MD and part of my oncology team) said we'd watch it for awhile before doing any brain scans....YIKES...never like to think about the brain going south(at least any further than it already is)

 

I still think that the "afterglow" of cancer treatment takes years to process both physically and emotionally.  I am now in touch with several docs in my area..including the founder of our new breast care center..to initiate programs for survivors of breast cancer helping us all deal with these concerns.  We'll see how that all goes...no doubt it will take time...

 

Best to all.  Hey, I seem to be able to post again!!!!

Cheryl51

 

Let us know how you are doing,

 

Hugs

 

Cheryl51

     Sadie Rose is 4 or 5 years out I think.  We need to keep in mind most women never think to ask, let alone research their pathology...we are rare breeds!  Also keep in mind the term "Triple Negative" has only been around three to four years.  There are lots of TNBC survivors out there, they just don't know it!!!  We are the mentors for future TNBC gals, so the master plan is to stay alive so we can give them hope....what do ya say??

 

Ronda

      I know what you mean, it's easy to panic when we start thinking about the possibility of death by cancer. 

      By the way, I plan on raising those TNBC numbers....they totally piss me off.  We need to get healthy, stay healthy, and be aggressive with our treatment the first time around.  Our biggest problem is the docs showing the other BC stats to the new gals and having unknown BRCA's make the mistake of keeping their breasts and radiating them to boot.  Now I'm no rocket scientist, but I know stupid when I see it.  My onc, who is on the national bc board said the oncs are being more aggressive with all triple negs, and encouraging mastectomies, you wouldn't know it by this site.  I think lumpectomies are fine for the other bc's but not triple negs, but to date no one has made me queen of the forest!  There are alot of us out there, and there will be a lot more....don't ever think it's hopeless.... we have to live just to make a point damn it!   :0)

 

Ronda

 

Everytime I see where a gal has chosen a lumpectomy and not a mastectomy, I just get a lump in my throat. Lori's onc said that he sees the "return" of those with the lumpectomy. Not just TNBC's either...bc+.

 

Flutist (Rae), when she was on the site kept telling the gals...do all that you can. when you are dx...get everything that you can....to assure it will not come back. If you are BRCA+ then you had better do just that. Some of those who are 20 years out had bilateral mastectomies and chemo for a year. Talk about aggressive!

 

I know there are gals on the site who are years out and have had a lumpectomy and they are doing well....no recurrence...no mets.

 

Lori has a friend who was dx and she was having the BRCA testing, before she decided anything, and I don't believe that she was TNBC. Of course we know that ...what...85% of BRCA+ are TNBC gals. My husband's sister had bc 13 years ago, had a mast. and is well. She has early stages of dementia...but no bc or mets.  

 

If the oncs are being more aggressive then why are we seeing or hearing from gals who are told that lumpectomies are the way to go? They are told that if the tumor is small, then they don't need mastectomies. Yet....we are told that the smaller tumors may be the most aggressive.

 

Nancy

 

 

     You said it!  If the goal is to survive without mets, recurrance or a new cancer.....then be aggressive as possible with treatment.  The thought of being stuck in a perpetual state of fear and loathing was just too much for me to take.  I've done all I can to get it gone and remove anything where it could possible grow again.  If at the end of the day it didn't work, I will know I did all I could to stop it!

 

Ronda

 

I really appreciate all the passion that is transimitted in your posts ~ but please be gentle to those of us who had lumpectomies on the advice of surgeons and med. onc. who were giving us the best data available at the time.

 

I have two 5 year survival stories for TNBC ~ one chose lumpectomy plus RT, the other had bilateral mastectomies and no RT....both had TAC in two different formats. They are 5 years out this fall! and knowing them both calms me down quite a bit....but

 

when I see emotional posts about the need for mastectomies it marginalizes me, and really makes me second guess decisions made 9 months ago.

 

be gentle, Kathy

     I'm sooooo sorry that I said anything that made you feel marginalized.  We all made the decisions we made based on the information that we had at the time. 

     The reason Nancy and I frame our very redundant conversations the way we do is to make sure th lurkers are getting the information they need to make informed decisions.  Unfortunately there is a huge variation of treatments being offered to triple negatives that are jeopordizing lives.  Though  there are women out there who have taken lumpectomy as an option I still feel the question needs to be raised to the women currently seeking treatment as to whether or not it is a good idea.  I know others may start second guessing their treatment as a result of these posts, but my intentions are directed toward the newbies considering treatment options.  

    We are all in this together and everyone of us have a vested interest in seeing that the information get out there on this particular brand of breast cancer.  I have copied a post that shows statistics on the bc survival with mastectomies.

     Again, I am very sorry if I offended you and will try to soften my razor sharp tongue.  I wish only the best for everyone and will work on my delivery......but I'm such a raging rebel...it will be difficult!

 

 

 

Ronda

 

  

 

We all make our decisions based on what information we have at the time and that is the best we can do.  But I imagine most of us have had a belly drop occasionally by reading a report or study result about something they had, say the type of chemo and what it might do or it might not work for tri negs.  I certainly did when I learned later on about Adriamycin after I had already had it.  I was not a happy camper but what could I do.  I'd rather know then stick my head in the sand.  That won't do me any good.

 

Information for breast cancer is constanly moving along which is what we want but I am afraid we will all run into an article or conversation talking about what might be the latest and best thing to do and it might frighten us.  It is just part of this madness and wanting to be empowered.  If you want to learn about your tri neg you have to brace yourself cuz occasionally you will not like a certain report that came out that day.

 

Ronda's link if you read it is favoring double mastectomy for younger bc patients but not older women.  Well you see this is another example of an article I can read and my first thought is well crap, I didn't have to have that mastectomy after all!  I am 62 yrs old and even though I'm older I have no plans on going anywhere and I hate reading that such a drastic surgery meant nothing for me, you certainly can't go back.  On the other hand, in 6 months they could change their minds again.

 

We want improvements, changes, new ideas on what is best for tri neg bc.  This is good, obviously we need changes badly.

 

Kathy I am so sorry if you have been offended, we try to get the newest information out there to the new ones being diagnosed and it can be scary sometimes for the rest of us who have already been thru treatment.

 

We wouldn't be a very good forum if we decided not to post anything that we thought might hurt someone's feelings, we have to go with the latest facts period.

 

I was told in 03 that lumpectomy was an excellent choice since according to my surgeon I had a 95% chance of never having cancer again.

Ahem, guess what, 4 years later it came back on the other side.  Guess what again, the same surgeon wanted to do a lumpectomy again and I had made up my mind by then I had had it and wanted a double mastectomy.  He talked and talked to me but I wouldn't budge.  I'm not happy that I had to have a mastectomy but feel I did the right thing.  He still hangs on that dang 95% it won't come back.  He is so wrong.  Also after my surgery I found out I was BRCA 1 + so that just put a stamp on my mastectomy as doing the right thing like it or not.

 

I in no way meant to offend you by anything that I said. Every day I am on this site, and every day we have a new gal or two join. This Bc is an epidemic of enormous proportion. TNBC is a very aggressive form of BC. I learned that very quickly when Lori was dx.

 

This site is unlike any other bc site that you will get on. We have new information every day. Pam posts everything that she can find to help not just the new gals, but also those who are sitting there waiting "for the other shoe to drop". This is a site to vent, to talk, to give loving support and to receive information, which just may save your life.

 

In my entire life I have always believed that the truth will prevail. We tell the truth here, and if you read Pam's post, and Ronda's post and then read CarynRose's posts, you will see that these gals want only to get the truth out there. They do not want you or any other gal to have to experience this beast more than once.

 

Lori just got her results from the BRCA testing and she is negative. Had she been positive, she would have done everything possible to ensure that she would not have a recurrence or mets. She knew what she would have to do based on all the information I have given to her from these intelligent, truthful women.

 

Connie said it best....we give evidence based cutting edge information. We are truthful. Pam has done so very well in researching for us, and no other site has this resource.

 

There are women and others who never become a member...they just lurk However, by repeating the truth over and over then perhaps we can make a difference, if in even one person's life.

 

I too am like Ronda...a raging rebel...and also like her....a loving caring raging rebel. We will change these TNBC statistics....one gal at a time!

 

Love and hugs,

Nancy

 

 

 

 

We all have our own truth and have to live with our choices. Are you saying that those that do have reccurances are not treated aggressively enough?Or were not? Didn't many of them do the best they could at that time? We are made to feel responsible enough for having breast cancer and now we have to feel even worse or guilty that we are not having mastectomy's.

 

The study cited was brought up at the 2008 conference but it was taken from 1998 thru 2003. We all know how much has changed since then. How many times I've read on this site don't use anything over 3 years.

 

Having a BRCA status does change everything. But not all of us fall into that.  I feel by your statements, I would be considered an anomaly. According to many of your standards. I have been treated medically, all wrong. I don't get scans. I didn't have a mastectomy. I didn't do dose dense. I only had 4 tx. I did only AC. I wasn't completely miserable. Zofran was acceptable.

 

At the time of my tx, that was all they had, that is what was protocol.  I think it is a crap shoot for all of us. I had hoped to give people on this site hope and to learn more about TN, which wasn't even named until 3-4 years after I had it !

 

I feel badly for the newbies that haven't the experience and are fearful enough with their dx. that they have to have more fear, in the name of truth.

 

I know the intentions are the best but what is wrong with being a bit more gentle and allowing those of us that have chosen or were given different treatment options credence and that we too go to dr.s that are competant.

    Your points are well versed and taken to heart.  In fact my doctors told me the same thing regarding lumpectomy vs. mastectomy, the conclusion I came to was based on "the other" information out there.  This is why I urge women to go beyond what their doctors are saying and make a decision based on more than just one medical opinion.  The "assembly line" of treatment that exists with BC does little to separate the 15% TNBC from the rest, even less consideration is given toward gene testing. Due to the innumerable posts on this site regarding the negligence of doctors, many here, including myself, have taken it upon themselves to make a change.  Some will welcome this, some won't.  However disturbing, the more informed the patient is, the more informed the doctor has to be.  Many docs simply do not make a distinction between TNBC and "the other" BC's.   Many women aren't even told they are TNBC let alone that gene testing may be a good idea.  That is why this site was created, to create a platform of awareness.  To help women survive TNBC.

    It was my new oncologist, who is on the national breast cancer board, that mentioned as a side note that doing the double mastectomy as a BRCA 1 is now thought to be a good idea.  This had changed from just 1 year ago when the opinion was close monitoring. 

     There will never be any absolutes when it comes to cancer in general as the discoveries are morphing daily, but with these dialogs we can volley the discussion back and forth so women new in their treatment can gleen information to make their decision. 

     Eventually we will all fall on one side of the other regarding these statistics, God willing with many lumpectomy long term survivors and mastectomy long term survivors, the difference however is that once the first 3 to 5 years pass, the mastectomies get to move on, while the lumpectomies get to wonder for the rest of their lives if every pain, rash, abnormality in their breast is BC showing it's ugly face again and if they're young or have an undiscovered BRCA 1 gene the chances of it happening are pretty good.  That is the reality and many doctors simply don't mention it.  This lingering uncertainty is not caused by noisy women on a site, it's there because it's real and it's relevant. If all of this has been discussed and women choose lumpectomies, more power to 'em!  If not,  they just heard it here. 

    I welcome and applaud your descent on this issue and look forward to more spirited, healthy discussions with no hard feelings I hope.

 

All the best,

 

Ronda

 

I just read the article link about the benefits of contralateral matstectomy on younger women. What the study did not stratify for is gene mutation status...which I have not yet been tested for (but will be since my dad died of melanoma - linked with BRCA 2). So that is a negative element about the study ~ none are perfect. I am 48 so I barely meet the age requriement for "young", but I was pre-menopausal....until CT.

 

I will discuss this study with my med. onc. at my f/u on Thursday. I am not yet physically ready to consider any other treatemnts, since I am still working hard on re-conditioning my body after 7 months of treatments...but would like to hear his opinion. He is one of the BC specialists at a major east-coast university...so I'm sure he'll have one.

 

Kathy

 

Please let us know what your doctor has to say.  We are all interested in learning all that we can.

 

Kathy you, ,me and many others went thru treatments with what we were told was the best we could do.  We can't look back and say what did I do wrong, we have to move forward and it isn't always easy in this ever changing world of new information.

 

You, me and the other women who have had treatment cannot blame ourselves as we did the best we could at the time.

 

Good luck and best wishes,

 

I in no way mean to sound like I am not giving any credence to those of you that have decided on lumpectomies.  It will be 6 years this December for me although it did come back last year.  I too like so many others had a lumpectomy in 03.  We can only deal with what we are told and a newly diagnosed women is probably going to be pretty much like me the first time and not realize that there might be other options or chemo.  Of course you do the best that you can.  No one is trying to suggest that if you didn't have a mastectomy than you did the wrong thing.

 

I would bet you money your doc is much better at setting up treatments than mine, believe me.  Mine is a lost cause IMHO.  I certainly would never suggest my Onc was better than someone else's!

 

Kirby I did not have scans the first time I was through with treatment and think the Onc suggesting an upcoming PET was just to shut me up.  Otherwise I'm sure they would continue their practice of no scans.

 

It is a crap shoot for all of us.  It seems no matter what anyone does at any given time there will eventually be an article saying that might have been wrong.  We just have to gulp it down and know in our hearts we did do the best we could.  No one has done anything wrong and I would never suggest that they have.

 

In the name of truth, Kirby I thought the purpose of this forum was to support, learn, help others with the newest information we can find.

 

You have been very fortunate in your years of survival and we greatly appreciate your posting and giving the rest of us hope and knowing there are long time survivors out there!

 

Respectfully,

    I confess that last night I did have chocolate and honestly me without sugar is a handful!  So if I came across a bit too righteous, can I please just blame it on the chocolate? 

 

I'd like to end this thread on a lighter, more positive note, if that can be done at this point.

 

So here is another really bad joke.    

 

A bunch of guys were sitting around a camp fire exchanging hunting stories while Tongue Tied Joe sat quietly listening.

 

Finally one of the men looked at Joe and said "Joe, you've been awfully quiet this evening, don't you have a story you'd like to share?".

 

Joe replied with his ever so slight speech impediment "Not really.............All though there was this one time I was walking through the forest holding my gun when suddenly a bear jumped out and said ROARRRRRRRRR!"

 

Joe paused for a moment and looked embarrased.

 

One of the men said "What happened Joe?"

 

Joe replied "This is kind of embarrassing"

 

Another man said "Don't be embarrassed Joe, tell us what happend!"

 

Joe, still looking embarrassed  said  "I crapped my pants." 

 

Another man said "Joe don't be embarrassed, if anyone of us was surprised by a bear, I'm sure we'd crap our pants too!"

 

Joe still looking uncomfortable said "You don't understand, I didn't crap my pants then, I did just now when I said ROARRRRRRR!"

 

 

If someone can find a moral in this please let me know!

 

Reconciliatory hugs,

 

Ronda

 

I don't think you are in the minority.  Both times I have been diagnosed I was not told a thing.  The first time I eventually figured it out by researching online.  When I was diagnosed again I had to ask my Onc if it was TN.

 

Alot of ladies have posted saying they were never told.  Your pathology is done at the time they do the biopsy.  I don't know if surgeon's would be as aware but an Oncologist should tell his patients.  Maybe some of them think that would be overload for us since we simply wouldn't "understand" but women now are getting smarter so these docs need to realize that. 
We can handle being told we are TN.

 

Lori knew that she was TNBC when she had the screwed up lumectomy....the "cyst". She read her path report...and has not looked at it since. She saw that she had the p53 gene mutation and just lost it. That is the guardian "angel" gene.  

 

Years ago a woman could not tell you what her status was....because she never asked. my husband's sister only knew that it was "aggressive". Since Lori is BRCA- then apparently it was not TNBC. I know women sho had bc 20 years ago and they have no clue as to the status. In fact, they look at me like I have two heads when I tell them Lori is TN. A friend of mine and Lori's has TN and she didn't know it was TN until Lori was dx!!

Nancy

 

After my biospy, I knew that I had IDC and it was a grade 3.  It was after my surgery/lumpectomy, and the tumor was sent to the pathologist, that I was told it was TNBC and by my oncologist's nurse who called me.  I had contacted my oncologist and made an appointment to meet/interview him after my lumpectomy.  The pathology report was sent to him as well as my surgeon.

I don't know that this is unusal not to know what type, ie. negative/positive cancer we have until after it is removed-even though, a patient would want to know what type of breast cancer they have if they are receiving chemo first and then surgery.

 

     This is my point exactly!  When I was diagnosed, I assummed it was estrogen receptor positive....after all most bc's are.  I did all this research on ER+ and was avoiding soy and everything! When I went to see my surgeon she said no, that I had no receptors.  She mentioned that sometimes this type of bc is genetic, BUT she didn't say what that meant either!!  The ONLY reason she brought up my pathology was because I BROUGHT IT UP FIRST! I was actually relieved that I had no receptors because then I didn't have to take all that crap they want to give you after treatment!  Ignorance is bliss!  She went on to tell me the statistics regarding mastectomy vs. lumectomy, the same stuff they tell all their bc patients.  I started doing more research and finally came across the term "Triple Negative".  I opted for the mastectomy by luck because I didn't want to risk local recurrance and I didn't want radiation near my heart  (and I do believe women are not fully told the long term and even permanent side effects of radiation).  After my first mastectomy I mosied on over to the genetic counselor because THIS SITE recommended it.  And though the genetic counselor thought my chances of being BRCA 1 were practically nonexisitant, she agreed to test.  I had all ready deciced to remove the other boob to have semitry for reconstruction, the day after I made that decision I found out I was a BRCA 1.  Given the circumstances I accidentally made good choices, thats "F"d up.  AND as it turns out survival is increased for ALL young TNBC by doing this, regardless of BRCA status!

 

     So the question I pose is why are some of the doctors handling this so poorly, and I believe the answer is becasue there are sooo many different types of BC, that they pretty much handle them all the same.  I also pose  the gals who end up with new cancer, recurrance and death could very well be the TNBC's in there cute little pool of lumpectomy statistics. 

 

If I were queen of the forest I would handle it like this:

 

Once they have a pathology here's the next appointment: 

 

Ms. Collins I have some bad news, You have breast cancer.

The type of cancer you have has no receptors, we see this type of cancer in young women and it is aggressive.  You can have gene testing, which will help your family members and perhaps help you avoid ovarian cancer,  however we have other statistics that show mastectomy increases survival with this type even in non-BRCA women.  You need to understand that a lumpectomy is also an option you can explore, but it does have it's risks. Take sometime to think about it and perhaps do a little research before we decide about the type of surgery and treatment you'll be having.  I hear there are a bunch of gals at this web site who are full of opinions!"   It's that simple (o.k, it's not, but it's better than what most of us were told!). 

 

     Right now many women are being given lumpectomies and radiation and are being told that one is as good as the other with TNBC.  Then they come on to this site and say "Why wasn't I told this stuff!"  Many of us weren't, we learned by the school of hard knocks. 

 

     I pose that this is one of the reasons our statistics are worse than other BC's, we are simply NOT being educated about this type of cancer until after our treatment is over! How ridiculous is that?

 

     Is it really ok for all of us to learn the hard way like Pam did by being blind-sided by another cancer, or wouldn't it be better to make informed decisions that increase survival from the get go? 

     It's an important topic and it stirs up a lot of feelings.

 

 

All the best!

 

Ronda

 

 

 

Mine and Lori's friend was 5 years out from dx when Lori told her what her path report meant. She is my age and never questioned the docs. I...on the other hand....question everyone and everything. Maybe it was 20 years as an Army wife which makes me who I am.

Nancy

 

In hindsight, I wish I had met with the Oncologist first, THEN the surgeon. 

 

The hospital that I am going to has a "team approach", with the surgeon, oncologist, radiation oncologist and a breast cancer coordinator (RN) making the appointments and giving out test results.  These teams meet with other teams for cancer board discussion.

 

My diagnosis was given to me over the phone by my internist after the core needle biopsy by a radiologist.  Internist referred me to a local oncologist associated with a small hospital.  I decided to go to a larger center in Seattle and connected with the BC Coordinator.  In that haze-after-diagnosis, I was at a loss on what to do and next steps, so I followed the plan that the Coordinator gave me . . .meet with the surgeon first.

 

So what we've learned, hopefully a newbie will read this and decide to meet with their oncologist first.  I so wanted chemo first, but couldn't get the surgeon to agree with me. 

 

 

Boy has this thread made me think about the way information is presented to those with any form of cancer or major illness...

 

thinking back on my experience, my surgeon who performed the core biopsy called to inform me that I had IDC and to set up an appt. for the full pathology. He told me in person, that I had Grade 3, TNBC and then described the lumpectomy vs. mastectomy choice....I did not go out and research other views b/c I was totally in shock! and despair! and I guess many others feel the same way. I was told I could have a mastectomy for psychologic reasons (couldn't live with the breast still intact) but had seen my friend survive 5 years with TNBC after lumpectomy and had no strong feelings toward mastectomy. My surgeon suggested the lumpectomy plus RT had the same outcomes as mastectomy - but no differentiation with TNBC.

 

I saw the med. onc. 2 weeks after the lumpectomy, so I wasn't offered the chemo first ~ tumor size may have played a part since it was < 2 cm....

 

Anyway, the point of my post is that somehow the message must get out, this site being one way, that there are differences in TNBC that should make the surgeons and med. onc. take pause and consider this sub-type and all it's differences. Women need to be informed to do the research before major decisions are made....but in the shock stage you must be told to do this! or else you just trust your doctors. I felt very well cared for, and always recieved answers for my questions....but didn't have the mental energy to look for more info....so that is why now I am worried!

 

Should I have more surgery, I wish I could have had Avastin during chemo....the trial started recruiting in the middle of my CT...it's hard not to look back and second guess. I just want to survive this beast!

 

Kathy

    

        Now you're starting to get it...most of us were handled this way.  The major reason my little sister got her treatment right the first time, was her older sister is a nag!

 

     It's not that the information isn't out there, it's that mainstream medical practices have our statistics lumped in with "the other" BC's.  Even when pressed, they still stick with their Lumpectomy vs. Mastectomy charts and it's because THEY DON'T KNOW!   When you pull our stats out of these procedures we do not do as well as the other gals.  WELL HULLO DOCTORS....THATS A CLUE!

 

      It's kind of a cluster F%#K when it comes to TNBC because the BRCA genes have a solid data base and most BRCA 1's with bc are TNBC.  When you're a BRCA you do "this and this and this".  I think testing negative for the BRCA's gives women a false sense of security because there is ample evidence that other TNBC's are also genetic but we just haven't found the gene yet.  So we know undoubtably it's a good idea for BRCAs to do the double, but this study showed the rest of the young TNBC's would also survive better with it.

 

     The argument I make is not to talk women out of lumpectomies and I really don't want to make them feel bad if they've had one, it is to make sure they are given the right information BEFORE they decide on treatment.  I would love to see a poll on this site that poses that question.....Were you told lumpectomies were as good as mastectomies? The next question would be: Do you think your doctor would have told you that if they knew your cancer could be gentetic? More and more the answer to that last question would be "no"!  Having a defective gene means you don't have the means to fix a cancer mutation.  This is why many women get TNBC when they are young, because of some kind of defect.  "The other" BC's that are not genetic require longer exposures to toxins/hormones etc to create the 2 breaks needed for cancer.  People with genetic cancer have one break to begin with.   

 

    My goal when I was diagnosed with Triple Negative Breast Cancer was to get it gone for good the first time.  The trama of losing my breasts can't even come close to the trama of livng in the shadow of this disease.  All of my doctors would have given me a lumpectomy without a second thought and as it turned out I'm a BRCA 1.  The site FORCE was set up to intervene in this practice for BRCA's so they could save womens lives because doctors were not being aggressive enough in treatment.  I pose this approach should be done for ALL TNBC's if we want to improve survival.

    

     Many women end up doing the double mast. years down the road when if they had had the right information the first time they could have avoided all that trama and potentially new cancers, they could have also significantly dropped the rate of local recurrance and avoided radiation if they were node negative.  

 

     This is a huge problem and if this site could do anything to bring change and survival to TNBC it would be to shout this from the roof tops!

 

Thank you for helping us shed light on this issue.

 

As altruistic as it might seem, we really do want to improve our stats one gal at a time!

 

Ronda

 

Sweetie, I'm the case to prove your point.   I'm charging you with continuing to speak out about this, not just here on this board, but to anyone for whom this will make a difference. 

 

BTW, for what it's worth, my Vit. D3 went from 36 to 52 after the course in D that my endocrinologist put me on.  In my case, maybe too little too later, but I think for those who are working to prevent a recurrence after first time, there is great value.

 

Love,

Caryn

 

One way I think we as a group can help is to educate (if we can) the surgeons and oncologists that we see.  I have found one nurse in my little clinic that is becoming very aware because I am pounding her with info.

 

If there was even a way to put out pamphlets in doctor's offices women might pick them up and learn something before they begin their journey.

Posters, something to get their attention.

 

Since the medical field for the most part is lagging in TNBC and genetics we must continue to pester them to please tell their patients ahead of time when they discuss their pathology.

 

My Onc is a lost cause and doesn't want to hear or read what I bring in but his nurse is listening and I think they spend much more time with the patient's than the docs.  If they too would advise with info it would help so much.

 

Ronda I also have pinned a medical degree on you and I want you to be my Oncologist if my c comes back.  You are definitely much much smarter than mine.

 

 

 

CarynRose it is lovely to see you back and posting, we've missed you dear.

 

I so agree with you that doctors need to give all of the information and options after the biopsy . . . .and before surgery for TNBC.  Hindsight is always wonderful.  Knowledge is power.  Combine the two together - I would have had a mastectomy.  And I was over 50 when diagnosed.

 

I have completed 2 of 4 chemo treatments and have the fear and  thoughts that the cancer will return.   I am already railing against radiation and it's not because of the side effects.

 

http://breastreconstruction.org/ReconstructionOverview/RadiationandReconstruction.html - http://breastreconstruction.org/ReconstructionOverview/RadiationandReconstruction.html

I struggled with the lumpectomy vs. mastectomy for over a month - and think I wrote about it here or on NoSurrender.  I wasn't rushed into surgery, per se, as my husband was having his cancer surgery before me.   But I also wasn't receiving all the information when I was talking to the surgeon. 

 

If I was dealing with the decision now - with my current knowledge and strength - I would have held my ground and asked several radiologists and oncologists so many questions until they got sick of me.  Instead, I was patted on the head - by a woman surgeon no less.

 

I love this discussion . . . it has validated my feelings about the medical community.  It will also factor into what I write on the  survey I just received from the medical center, i.e, Surgeons like to cut AND shouldn't be the one directing the treatment/decision plan for cancers of any kind! 

 

I've thought I was very fortunate because my cancer center follows a protocal that provides a "cancer - yes or no" answer immediately after (5 minutes literally) the biopsy.  Repeat mammogram, ultrasound, biopsy, yes or no ---, initial surgeon visit --- all in the same place, same day.  You leave with options and a schedule of addl scans, etc., somewhat with a plan of attack.  It's fantastic that there's no waiting by the phone or nervously waiting for an appt the next week to learn if the biopsy is malignant, but reading your post I realize it comes with a price. 

 

This speedy initial biopsy pathology isn't complete enough to include vital data to make an informed decision regarding the treatment options. 

 

My surgeon did tell me the stats were even between lump/chemo/rads and mast/chemo.  I went with a dbl mast simply because I thought it would solve the problem once and for all --- how simplistic THAT was.  

 

And Caryn Rose, you've been on my mind so much this weekend.  Glad you're home and posting again.  Hugs and prayers are going your way --- and give your hubby a huge hug for us.

 

Jessie   

 

       

 

Caryn, 

     If there is anything you need or you just want to blow off steam, I'm gonna PM you my phone number.  I have unlimited long distance so I can call you back.  I don't want ANYONE on this site to be the example of what not to do, unfortunately we all have the potential to be just that to one extent or another.  The real beauty of this ordeal is in this collective consciousness created by the death of one woman, and as a result  we will hopefully be effecting long lasting change for future generations.  You Caryn have been a very great source of this achievement.  Every single one of us who takes a moment to effect change is saying to the planet "This Matters".  You've taken more than a minute and everyone on this site benefits from your wise words.  Crap Caryn, lets face it....you're a Godess! 

Keep fighting the good fight!

 

So Gals, we need to create a questionaire that compiles data on us that will help The National Bc Council and perhaps give a recommendation.  Who's good at that??  I'm mouthy, but we could use a good writer on this one....speak now or forever hold your pee!

 

Ronda

O.K. so I guess I'll do something.

 

 

      I'm going to take this stuff to my onc (he's on the National BC Council) and see if he agrees, if he does then I'm going to find out what this site can do, and us too, to get this info into the hands of all onc and surgeons.  It may be through the National BC Council.

 

     If Force can increase survival, then we can too. 

 

 

        Anyone disagree????    It's o.k. if you do....so speak up now!

 

Ronda 

 

 

     

Been trying to reply to your PM, but I guess your inbox is full. My message didn't go thru. Let me know when you clean out your inbox and I'll reply back! Thanx!

-sicknurse

 

Survival is done....one gal at a time...and if anybody can find a way...I know that you can. What do you need from us? Perhaps if Hayley took a look at all these posts, she could help? This foundation? That is why this foundation was started, to help TNBC gals.

Nancy

 

Another great idea. Of course all this creative genius just happened along after you became a buxom beauty. I think I will sign up for a boob job - although I was rejected when I wanted to recycle the little paunch I had left over from my pregnancies. The surgeon laughed and told me I would need much more than that....but not to gain 40 pounds just to have something to recycle into a new breast.

 

I think it would be a great starting point for one of our doctors to TELL US WE HAVE TRIPLE NEGATIVE BREAST CANCER.

 

The more attention we get - the quicker they will find a cure for us.

 

Love,

 

Connie

 

 

    My sister has had her back surgery last Thurs. and I am happy to report that she is just doing great.Every day is a better day.She has completed her Chemo ,radiation, and is now completed surgery for lumbar laminectomy for spinal stenosis(trapped sciatic nerves in the lower back)I need to add that this was not due to chemo.This problem started for her in 1991.The surgeon even commented that her bones were really stronger than what he had antiscipated.Needless to say this has been a year from hell for her and I have suggested to her that I will always put my life on hold for her anytime ,but that I will actually give her until the middle of December and I want to see her back on the road again.In 2007 she was constantly calling me as she was going through Houston, traveling down the road to go to see her Kids in Dallas.So if we can just keep that damn beast at bay we are on the road to a complete recovery.

   Also Connie,both of us are actually starting the tumeric today.She was told to get off of it until she had the surgery,but she was only taking 400mg daily.We are both sooting for the anti-inflamatory ,but also for the cancer benefits that have recently been discovered.There was an article in the paper about the study that was recently done at MD Anderson in regards to curcuma(tumeric) and its benefits.

   Now ,I would like to chime in about the wonderful discussion that has been going on while I was with my sister.

   When we were waiting to go to see the surgeon for her results ,my sister said ,if it is cancer I would prefer to have the breast removed,but of course that never took place because we were given the wrong information from the radiation oncologist that we went to see .We were trying to find information as to what to do and what we needed to do.This onc had not taken the time to read all of her path report and began telling us that a lumpectomy was sufficent,no chemo,only radiation..I have written this more than once and am about to write it again and again until some how some one out there listens to us. There should be some kind of ethical law passed that all surgeon's should be forced to have to send their breast cancer patients to special councelors before they are ever given the go to do the surgury for the removal of the tumor.Yes, all of us can say hind site is 20 20.And what we should have done.But until we are given the right information as to what our options are,I am afraid that our limited amount of information is going to lean more toward the mercy of what the surgeon suggests at that time.I can remember that the surgeon was also very busy tooting his horn about his knowledge of the sentinal node procedure.Which I might also add that the 2 of us are very greatful for,but even that almost did not take place.We actually had to wait 3 hours more for the surgery to begin all because the nurses in the hospital did not read all that was to be done to inject the dye into her breast.If I had not been there and questioning and telling them what was suppose to take place she would have been in surgery and I am sure that he would have had to remove several more lympth nodes than was necessarry,in order to complete the surgery.First of all when we heard the word CANCER,we actually heard nothing past that. I have to give my sisters surgeon credit ,because he tried to take the time to point out the receptors to the 2 of us,but we could not get past the word cancer and actually the words he was saying meant very little to the 2 of us simply because we had not had time to process the words that we did hear.We were from a family that has never had to deal with any type of cancer and that just really did not apply to us..And as we learned about trip. neg. and breast cancer, as we think back we can remember a little of what he had told us and it all started coming together.Especially after I was at the computer with my sisters path report in front of me and watching Robin Roberts and her interview with Chris Rocks wife and putting 2 and 2 together.

      What  really upsets me is that my sister would maybe have liked to have the tumor examined futher to determine if the chemo that was chosen for her was indeed the right choice since especially at that time all scientist were scrambling to find the right choice to give their patients.So again we were not given all information as to what was available for her.

     So Rhonda and all of us ladies out there.We are going to have to as Rhonda said,somehow get this information out there.You know what ladies, I would like to suggest to my sister to go right now and get the breast removed while we so stongly believe that she is cancer free.But there is no way that I at this time would even suggest another surgery to her.As I mentioned ,my sister is on the road to recovery now and if this beast comes back in her breast,I am going to be sooooooo sooooooo   Pissed.My sister takes things a little calmer than I.

     So what ever you need Rhonda, we will all be out here to tell our stories and to help in any way that we can.Not only would a hospital appointed counselor for newly diagnosed Breast Cancer Patients be a wonderful way to inform ladies as to all the many choices that they should be given prior to their surgery,(has to be prior to surgery,after is too late for some of the procedures)but this would also create many many new jobs.    Lots and Lots of Hugggggssss   Billie

    

 

I've been thinking to simplify this maybe we should pose that Young pre-menopausal triple negative women should be informed the mastectomy gives a beter chance of survival.  We have a study on that.  Then if gals want to further explore the BRCA gene for proph oophs they can.  If this is standard education  for this type of bc, it could cause the patients to become more informed.

 

I really want to toss this back and forth with all of you, because I think we're on to something great, please speak up and add your 2 cents to the opinion.  We really want to get this right.

 

Knowing what you know now, what do you wish you were told and in what order?  How would that have changed your treatment choice and or outcome. 

 

Ronda

 

When I was collecting suggestions/recommendations for the "Questions for the surgeon, med and rad oncs", the one thing that really stood out, and was CalGal's first concern, was that if there was a family history of cancer, then the BRCA testing should be done before anything else. Of course, some have no family history, and/or their family members are not cooperative.

 

The younger the woman, it seems that there is the possibility that they are BRCA 1-2 +? Is that correct? Or is it just TNBC?

 

I still have not added that question at the very beginning of the document, but have been encouraging new gals to ask for the test. In Lori's case, misdiagnosis was the culprit, and I have seen quite a few gals posting the same scenario.

 

Being postive for the BRCA genetic mutation changes everything. If you are not aware of this, then there is a possibility that you will have to go back for the mastectomy/ooporectomy......if that is what you feel you need to increase your survival/chances for recurrence/mets.

Nancy

 

     There are several  reasons why gene testing before surgery descisions aren't a good idea.    I believe it is this confusion that is leading to the lack of optimal treatment.

 

1.  Gene testing is typically not paid for by insurance so many women simply won't get it.... AND

 

2.  It takes several weeks to get results which could result in treatment delays BUT THE BIGGEST REASON IS...

 

3. Because we know that there are other undiscovered TNBC genes out there, we just don't know what they are, but the data suggests that TNBC in pre-menopausle women benefit from mastectomies as well as BRCA's so that most likely could mean that pre-menopausale TNBC's are genetic which would also include many BRCA's in that catagory.

 

By going this route young pre-menopausal women would have a mastectomy strongly recommended.  If it were me I'd probably recommend it for all TNBC's to be safe, but the doc's don't have any studies to support it and may think it's too extreme.

 

I think BRCA testing is wise for all, but many don't have the option so you could look to the pre-menopausal TNBC instead....much easier.  Then if down the road they want to check BRCA status great.  It won't catch everyone, but it will catch a hellavalot more genetic BC than we're getting now.   I think the big question is to ask the BRCA's on this site if they were pre-menopusal at the time of their dx, if most say yes, they would have also been covered by this theory.

 

I am BRCA 1 and was pre-menopausal at the time of dx.

 

How is my thinking on this???

 

Ronda

 

 

 

My insurance did pick up 90% though.

 

So, I set up a poll asking just the BRCA + women if they were pre-menopausal or post-menopausal at the time of dx? What about all the very young gals ....34-42  and under, who are on the site who can't possibly be pre-menopausal?

 

Problem is that hardly anyone goes to these polls, which I feel could be very important for the medical professionals on this site...if they actually look at them.

 

Lori had her BRCA results in 2 weeks. She waited one month between the first botched surgery and the mastectomy. Caryn had said that is she had known her BRCA status that her decisions would have been much different.

 

I will set up a poll. How I wish that we could invite every woman who has been dx TN to join this site and actually participate in the polls, and that the medical profession were actually using these numbers for a study.

Nancy

 

Nancy, I guess the point is, the study shows that non BRCA pre-menopausl women benefit too, so if they get a negative BRCA test and are pre-menopausal then they would still benefit from a mast.  If we can show that BRCA gals mostly get first dx before menopause then we can say all pre-menopausal TNBC benefit from the mast. period... and then move them to BRCA testing if they show a history, for more proph. recommendations.  The point is all pre-menapausal women would be covered with a mast.  even the BRCA's.  

 

Whatdoyathink?

 

whatdoIthink?

 

I think I have to copy and paste your posts for me to read and decide how to set up the poll.

Hugs,

Nancy

 

Lori was expecting to have to wait for 4 weeks for her test results. They were back in 2 weeks....2 long agonizing...thats's all she could think of....weeks. Lori's tumor grew very fast also.

 

I think that is the problem...the Tn women are not being advised to consider  a mastectomy. They are told that if the tumor is small, then they should consider a lumectomy.  From some of the articles that Pam has posted, they are saying that the smaller tumors are more aggressive than the larger ones.

 

Lets just hope that they soon do studies of all the TN's, at all  stages. Then perhaps women would be better able to make informed decisions.

 

Have you read any of CarynRose's posts? Just search and she has made some arguable points. She is BRCA1+, but didn't know until after...hindsight is always 20/20.

 

Loved your recommendations for the males

Hugs,

Nancy

 

http://www.breastcancer.org/risk/new_research/20080908b.jsp - http://www.breastcancer.org/risk/new_research/20080908b.jsp

 

 

Ronda

 

Not only all that you have written...but very few go to the polls and fill them out....and then there is no follow-up by anyone of any importance....like the scientists....medical profession.  

 

Nancy

 

You know that Pam had said that she couldn't vote in one of the polls either. If you are posting, then you are logged in. Maybe a glitch somewhere?

Nancy

Hi Gals,

 

     When I went to my onc the last time I always ask "What is new and exciting in the wonderful world of triple negative breast cancer?"  I mentioned to him about the Lumpectomy vs. Mastectomy and I believe he said they were now recommending mast. for TNBC's.  I THINK?  and I think it was because of this study.  I'm going to verify that. 

 

    What I'm trying to get at is what can the foundation do to provide a clear path for treatment and support for all informed choices made.  I'd like to see every lumpectomy being shown correct stats while decidng treatment.  This study suggests a 30% benefit (not that lumpectomies are the same as mastectomies for TNBC's), hell we do chemo for a lot less benefit than that!  Also if they are give information on this site, it puts the risks into perspective, recurrance, mets, and new cancers have a person behind the statistic with valuable hindsight for guidance. Infact I'll gone one further, I think it's malpractice to give TNBC's uninformed lumpectomies because this study does exist.  When you think about all the studies we gals have read, this takes a pretty good sampling and explains why are stats suck compared to the other bc''s.

 

     Many women who've had lumpectomies go on to have mastectomies, and when it is done in that order, reconstruction can be a nightmare because of the radiation, women who are node negative can completely avoid radiation.  Radiation can be extemely disabling and make recovery way tougher, if you don't need it, the double mastectomy is so much easier on the body and get you out from under the beast in 3 to 5 years.   Reconstruction these days can yield some pretty good results, I went from a "36 D long" to some pretty choice mounds!  But hell I'd of stayed flat chested if it meant I could be done with TNBC in 3 to 5 years.

 

     Doing the double doesnt't do much for mets, BUT it significantly reduces recurrance to like 3% along with new bc.  You're mostly out from under TNBC with a mast once you get past your 3 to 5 year NED.  Everyone else is still at risk for recurrance and new cancer.  They are finding these 2nd new cancers can be quite challenging because they don't catch them in time.  This type of BC can become a nightmare you can't wake up from.  It doesn't have to be that way.

 

Someone please argue with me!

 

argue: to present reasons for or against.      

 

It's a good thing!

 

 

Ronda

So, with the above coming from a doctor- you betcha I made the decision I did.

 

Laurie

 

If we all had Laurie's surgeon we would be right on track.  Sadly we don't.

He was on top of current studies and info and advised Laurie at the time she needed this valuable advice.  By the time you get to the Onc you've probably already had your surgery unless you are doing neo-adjuvant chemotherapy. 
As an  added plus her surgeon also explained to her about BRCA counseling and test.  That is fabulous, that is where it starts.

 

So surgeons need to know what they are seeing when they read a path report and understand that if it is TN then that is different. lets look at some different options and make a decision.

 

I have never been told by my surgeon nor my Onc I was TN.  I've noticed there are others in this forum that experienced the same thing.

 

I was post menopausal when first diagnosed at 56 and didn't get my brca 1 results until diagnosed again last year at the age of 61.

 

I have noticed we have quite a handful of women here over 50 with TN.  I understand it is more frequent in younger women but find it interesting that we have the ones that we do so it isn't all just young women.

 

The average age for a woman to get breast cancer is around 55 to 58 yrs of age.  I  understand TN tends to strike the younger women of course.

 

 

 

I'm with Pam on this one. We want his name We want him to start calling all the other surgeons. It has to be the consulting that they do with other surgeons/oncs that makes the difference. You really want your surgeon to be up-to-date on every new peice of data. They are the ones removing the tumors, clearing the margins.

 

If they are like Pam's onc, they don't have a clue. She presents to him the articles she has researched, and I believe that he is so arrogant that he just pooh poohs them. These people need to get a job on an assembly line.

 

Darla is right as to the BRCA in limbo. Those BRCA's with a variance would have a difficult time making an informed decision also. Lori was so happy that she was negative and that there was not even a variance.

 

This guy is a keeper Laurie

Hugs,

Nancy

Nancy

    I have decided that I would like to post this even though it throws me out there for some harsh criticisom.As I have said many many times that my sisters first choice would have been to have the breast removed with no reconstruction ,but while we were just trying to gather information ,we were advised by an oncologist to stick with the lumpectomy.Heck we were so green that we did not even know that there was an oncologist to do chemo and an oncologist to do the radiation. 

   But the more research that I was able to do ,proved to me real fast that our surgeons's and oncologists are not GOD(even though some think that they are)and they are searching for answers as well as we are in this very very aggressive sub type of Breast Cancer.And I will say to you ladies that if my sisters breast cancer should return,I am going to be highly pissed for the simple fact is that if the breast had been removed ,as she wanted in the first place, it would certainly cut her chances for this beast  to return.It seemed that every time we thought that we were being given our best options and that we were doing the right thing ,it would soon be found out by us that we had the right to have chosen and gone with our first instints but because these were professional people we thought that we were in good hands that surly to God knew exactally what was right for us to do..Wrong!!!!!

     So now I would like to talk with you ladies that feel as if we are saying to you that the choice that you made to go with a lumpectomy was a bad decision and that all of us will now have to live every day just waiting on the beast to return.As far as I can tell there is no one on this foundation that is in any way pointing fingers,we are trying to learn.And if we can figure out just one thing that will perhaps keep our new members from going down the wrong journey that we took then I am upset for you.

   I would like for you ladies to go to the top of this foundation and read again why the close friends of Nancy Block-Zenna wanted to start this foundation.This is what their words read,It  is our mission and our goal to ignite interest in triple negative amoung researchers,physicians,educators,and scientists,to identify the cause and discover new and EFFECTIVE treatment options.It is our inspiration that all of you join us to find a better treatment options and eventually a cure.They did not ask us if we believed that chemo was the best choice of treatment for triple negative.They started this foundation in honor of their dear friend trying to find answers for this deadly breast cancer.

    If you are feeling that this foundation will loose its way and not be here to greet all new members and to be a place to come to be an inspiration to each other you are so so wrong.These women have worked too hard to all of a sudden not be here for everyone just because they chose the lumpectomy over the masectomy.The first thing that we all realize is this.We are all different.It may or may not come back .But how long do you think that it took for the scientist to realize that old fashioned chemo was the best choice of treatment for triple negs. The biggest problem that I had with this foundation is that when I joined there was so many wonderful ,different ,informative things to learn and discuss with these ladies that I wished so much that I had been given all of the information prior to my sisters diagnosis. I wanted every new member to also be given this information at the time of there diagnosis. And guess what .That is happening now on this foundation ,if we are able to get to them right after thir biopsy descovery.So many of the ladies find this foundation immediatly after their diagnosis.This foundation has grown in leaps and bounds just since I have become a member at the start of this year. And for us to have to worry about stepping on someones toes is just ludicrous. WE are trying with everything that is inside of us to help   the decisions for our newly diagnosed sister's to be able to get it right the first time.

      There are new members joining everyday.Is it going to get to where there are going to be so many members that every time that I choose to us the word pissed that I have to worry that I may be offending someone out there and get reppremended for saying that?.Because ladies ,I am pissed.I am pissed that this Breast Cancer has been out there for over 20 some odd years and it is just now that they are trying to discover exactally how to treat or deal with it.I am pissed that any of you have to put that god awful poisen that was invented years and years ago in your body because that happens to be  all of the amunition that they have to fight this horrible beast. I am not going to apologise to you ladies out there,because to be honest,no one at any time said to you that because you chose to have a lumpectomy that it was the wrong choice to make.Our options are put out there,but to be quite honest,our information is only the top of the iceberg.They do not even bother to tell you all of the side effects that the poisen being put into the body can leave you with.They leave the choice up to us ,and I suppect that they do not explain everything to us because that is how they live with themselves.They can say that it was our decision to make and we chose that one.I'll just bet also that if it was their mother,sister,or wife that got this deadly subtype that the removal of the breast would be their only option.This sub type of breast cancer is russion roulette.No one and I repeat ,no one really knows if it is going to return,but if my sister had been given the right choices at the right time to give her a better % that it would not for a fact return then we would have taken it without any question.So if you ladies are going to get upset with any one,let your anger be directed towards the medical professionals  that are out there every day gambling with our bodies and how much we can endure before we succumb to the hidious treatment that we have to endure just to try to LIVE. And for this I will not apologise to anyone for.I want my sister to live and I want every woman diagnosed after her to live. And somehow we have got to go down that pathway and not leave any brick unturned.The answer just may be under the one brick that we chose to not turn over because someone wanted to be able to step on that one.This foundation is not going to change. All of us out here are going to be right there for any lady that finds us,to help her to get through this journey that we nor her chose to take.But thank goodness our sisters were here to take our hands and to help to guide us as best they can and now we are ready to take the hands of our next sister and PAY IT FORWARD.Lots of Huggggssss    Billie

 

1/ Massages and reflexology. This HURTS, but it is great and helped. I am now shooting pain free and have only "out of the space feeling with my feet.

2/ Vitamins supplementation.  Somebody on this forum suggested start with B6 100/day for week 1, then 2x 100/day for week 2 and so on until you do not feel improvement and than go back to the lower dosage and that is your level required. I am on B6 at 300/day now and the feeling healthy I did not have my ENTIRE LIFE!!!!!!!!!! Thank you, thank you, thank you, whever that was!!!!

3/ My GP suggested B12 test for neuropathy/carpal tunnel syndrome, so I added B12/B6/folic combination (there is very little of B6 in there).

4/ I am taking VitD3 and just starting the 50,000/week regime (You are SECOND person on this forum who was suggested this treatment, so go to hell with canadian doctors and I am doing this!!!!) for 6 weeks and then every other week for next 5 months or until somebody will test me and tell me I am OK!

5/ I have just read about clinical trials with Omega3s. See at:

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=605670&version=patient&protocolsearchid=5411635 - http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=605670&version=patient&protocolsearchid=5411635

So I will start with recommended 3x 1000 Omega3 with VitD3 (D3 absorbes better than D2, check that out) combination for added absorption (VitD has to dissolve in fat!).

6/ Also, low fat diet (less than 25g/day) is suppossed decrease reoccurance in TNBC by 25%. See at:

http://www.nih.gov/news/pr/dec2006/nci-19.htm - http://www.nih.gov/news/pr/dec2006/nci-19.htm

I hope this help someone! Galina

Your ONC is wrong, you will get relieve by talking to us, knowing what to expect and knowing what clinical trials you can join, knowing you are not alone, we will fight this evel together, we will feel pain and despair together, we will get educated together and WE WILL ASK QUESTION AND DEMAND ANSWERS AND GO TO SYMPOSIUMS TO DEMAND CURE!!!!!!!!!!!!!!

 

 

I went for my f/u Thursday and was told, almost the exact wording of the study "It is prudent for a young woman - (under 50, I'm 48) - to consider bilateral mastectomy." I gave him a highlighted copy of the study, and he felt he would not have changed the order of the procedures I had...and that the bilateral mastectomy is more of a long-term decision than a short-term one. His argument for mastectomy included the emotional stress of false positive scans and ensuing biopsies. I will see the "go to" guy in Baltimore this winter.

 

K  

 

Thanks for keeping us posted.

 

Ronda

 

P.S.  You probably should see a plastic surgeon and talk to them about rads. recontruct. etc.  They may have some important guidance you'll need before starting treatment to get the best recon results.

I was presented with statistics that put a lumpectomy no more risky than a mastectomy for my case.  I was ready to accept a mast but don't feel any regret doing the lumpectomy at this point.  I was 55 yrs old at diagnosis, and officially was menopausal in Dec 07 at end of treatment (ie, no periods for 12 months).  No other cancer in my family.

I feel that if I have a recurrence I will be PLENTY p--d off but won't regret having the lumpectomy vs. mastectomy... it's not a matter of vanity or self-image... I simply think my onc MD and surgeon gave me the facts as they knew them here in Minneapolis and I made the best decision for me...

that said, I do believe there is HUGE room for improvement in how we are being treated from the moment that cancer is diagnosed.   This site does a wonderful service to all of us out there...   so it's 20 months of survivorship for me and I am doing everything I can to stay healthy ie, more Vitamin D, Fish Oil tablets every day, working on my BMI, etc...    Dixie

 

Congratulations on your remaining cancer free!

   What treatment women get is up to them, I just want the doctors to get their stats right.  TN is high risk BC and needs to be dicussed that way.  Too many docs are discussing treatment before pathology reports are even back....not good.  If you're TN, you need someone who understands that it's serious and guides you accordingly.

 

Keep fightin' the good fight!

 

Ronda