One Year after

 

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

 

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

 

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.

 

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! 

 

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 

 

 

     

 

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

    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