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How did you find your breast cancer?

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Topic: How did you find your breast cancer?
Posted By: batgirl
Subject: How did you find your breast cancer?
Date Posted: Jul 22 2007 at 5:49pm
The reason I'm asking this is because I've spoken to so many women with Triple Negative receptors who seem to say the same thing, that their tumors just popped up from nowhere. That is what happened to me. I had mammograms, doctor's physicals, and did self exams in the six months prior to finding this, all negative. One morning I was lying in bed and my hand brushed across my chest and I FREAKED! I felt something the size of a golf ball in my breast! I showed my husband, who also said he never noticed it.Shocked

Then, three months later, my sister, who had also had mammograms, doctor's exams, etc., ALSO woke up one morning and her husband felt a lump in her breast. Out of nowhere.

So I'm curious if anyone else had this happen, or was it through the normal routes of physical exam or mammogram?

Thanks!

batgirl



Replies:
Posted By: MarilyninMiami
Date Posted: Jul 23 2007 at 12:32pm
batgirl, so far your poll is showing what your observations have been.  i have also noted that many trip negs have found their own lumps close to the chest wall...maybe outside of what most would consider "breast tissue"...mine was high on my chest. i didnt realize that breast tissue goes up to your shoulder!


-------------
MARILYN from Miami
dx:6-05, trip neg, basoloid, gr 3, stage IIB, lumpectomy,SNB w total axillary node surg 3pos/34 dose dense ACT, 33 rads, BMB (neutropenia) NED!!


Posted By: Cylb
Date Posted: Aug 09 2007 at 5:33am
I was lying in bed when my dog hit my left breast.  I rubbed the area and felt the lump.  I withdrew my hand like it was on fire.  My left breast had seemed unusually large in the past couple of months but I put it down to menopausal symptoms. I was 48, still having periods, but starting the hot flashes.  I'd had mammograms which were negative so it came as a surprise to find the lump - it was the size of my palm.
Even after the doctor felt the lump and gave me a mammogram and ultrasound, the tests indicated everything was fine.  I was told I had dense breasts. After the biopsy, it was discovered I had a dumbbell tumor - the tumor in the breast had broken into my chest wall.  The higher grade cancer was in the chest wall area.  The surgeon was stunned to find it as she thought the lump was only in the breast.


Posted By: Lisa L
Date Posted: Aug 09 2007 at 3:20pm
Ditto here!  I had a physical exam with a mammo following in the same day.  I know the lump was not there.  After the mammo it appeared, within days, maybe even that day.  Mine was about the size of a walnut.  I called the mammo tech to ask if the mammo could have caused the lump, she said no and sent me for a sonogram, the rest as they say, is history.
 
By the way, my letter from my mammo came back that the mammo was fine.  However, when comparing the recent one to the year before, you could see the difference.


-------------
Dx 8/05 age 43
mast & lat flap 10/05
Triple neg
BRCA neg
IDC 4.5cm rt br
0/1 sen node
6 A/C 5 Taxol, 25 rads 11/05-6/06
Central Illinois
Currently NED


Posted By: msm082455@aol.c
Date Posted: Aug 15 2007 at 10:17am
Hi......
 
I had my yearly physical on June 9th, 2004.  Everything was fine.  I scheduled my mammogram, but couldn't get in until late August.  However, on August 9th, I found the lump.  I then called my doctor, went to see him and was  sent directly to the hospital for the mammogram.  When the tech was doing the test, she said to me, "Oh I think you are going to have to have an ultra-sound".  I said, "Oh ok, where and when do I schedule that"?  She said, "Oh, I'm going to talk to the radiologist and I'm sure he will want that done immediately  Obviously, she saw it on the mammogram and the ultra-sound confirmed it. 
 
But, 3 years later, I am CANCER FREE!!!!!!!!!!


Posted By: trip2
Date Posted: Aug 15 2007 at 11:49am
Whoohoo msm082455, 3 years later and cancer free!Clap
 
 


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Lisa
Date Posted: Sep 12 2007 at 4:09am
Interesting stories. Mine is the oppposite....I thought I felt a lump one afternoon but then lost it and gave up, thinking I must have imagined it. About 6 months on, I found it again but this time it was bigger and easy to locate!  Once diagnosed the docs told me it could even have been there up to 2 years.


Posted By: DMB1
Date Posted: Oct 09 2007 at 8:13am
Thanks for website, very helpful.
 
I had been diagnosed with calcifications in 1995 at age 41, and wasn't really told what that meant, but to monitor them.  Had two mammograms a year for three years, then went back to annual mammograms.  Everything was stable, continued to self-exam monthly.  Then moved back to East Coast in late 2004, missed one year of screening due to job/travel, but something kept nagging at me to get it done.  Finally had a mammogram in August 2006, and got a clean bill of health.  I still have the letter. One month later, I was in bed and went to itch something on my right side, when I found "it" - hard mass at the far back side of my right breast, where the bra cup and band meet.  I knew immediately, it wasn't like anything I'd ever felt before. It was so far back the mammograms never picked it up. It never could be palpated standing up, only lying down (another lesson for all of us who self-exam ourselves). Was at the radiologist the next day, biopsied, triple negative, just under an inch, no lymph nodes, late stage 1-early stage 2.  Had MRI, showed other suspicious areas, opted for mastectomy.  Did A/C chemo for four sessions, then radiation therapy for six weeks.  Coming up on my first year anniversary.  Never really knew the implications of triple negative bc, only that I woulnd't be taking Herceptin, Tamoxifin, etc.  Story in OPRAH magazine this month (Oct. ) really opened up my eyes, and not in a good way.  Everyone keeps honing in on the fact that there were no lymph nodes involved (via SNB), but doesn't the nasty tumor pathology come into play here? 


Posted By: ruth
Date Posted: Oct 11 2007 at 12:44am
Mine was found by accident. I had a lumectomy and all was well. The ten days later, the pathologists report returned and I had to have a mastectomy.  Unfortunately the results were bad and so on August 3rd Had this done with replacement at the same time.  The results fom this test told me I had triple negative cancer.  I have had one chemo and today will have the second.  I am being given cytox and taxotere.  Just hope the second will go as well as the first.  Good luck to you.
Wink


Posted By: NancyJo
Date Posted: Oct 11 2007 at 5:22pm

I had a Mammogram and breast ultrasound done in June 2003 and both came back negative.  I found a lump at the end of October 2003 and when I went to see my Doctor she told me she thought it was nothing as it was a painful lump and she said painful lumps were not cancerous.  The lump got bigger and did not go away and I went to see my family doctor  and he sent me for testing which turned out I had triple negative breast cancer.  I also went looking for more answers which lead me here when I read the Oprah Magazine October issue and realized there was a name for our type of breast cancer.    I have had A/C and taxotere plus radiation.  I joined a breast cancer dragonboat team and it was the best thing I have ever done.

Cheers Nancy



Posted By: DMB1
Date Posted: Oct 12 2007 at 2:51am
I am so amazed to hear the same story over and over: "had a mammogram and a month (or so) later I found the lump."  I also had a painful lump, but I honestly think it is because once I found it, I kept poking at it to check if it was still there, gone away (wishful thinking), etc.  I also had A/C, but my oncologist held taxotere in reserve for the (inevitable) next round. 
 
I celebrated my mastectomy surgery one year anniversary yesterday. I thought at the one year mark, I'd be super optimistic until I read the Oprah article.  It was informative but depressing, especially since I was never told the implications of it all.  It sparked all sorts of emotions similar to those I experienced when I first was diagnosed, and an Internet frenzy on my part to find more information, most of which was NOT encouraging.  One exception:  a good article on TNBC research being done at Dana Farber in Boston.  Otherwise, the Internet can be our best friend as well as our worst enemy. 
 
Nancy, what is a breast cancer dragonboat team? 
 
Best,
 
Denise


Posted By: Nancy
Date Posted: Oct 12 2007 at 7:38am
Hi Denise,
This is Nancy (Lori's Mom). I too want to know what a dragonboat team is!
 
Where did you find the article from Dana Farber? I had emailed them for info on TNBC, and couldn't find anything on TNBC in the response from them. You are so right as to the internet!
 
Nancy


Posted By: DMB1
Date Posted: Oct 12 2007 at 8:43am

Nancy,

The article mentioned Dana Farber, but I don't believe it was from Dana Farber per se.  Of course, I printed it out to show to my husband last night, and it is sitting on the bedroom floor as we speak.  I will e-mail you the link when I get home this evening.
 
Denise
 


Posted By: Nancy
Date Posted: Oct 12 2007 at 8:47am
Denise,
Thanks...greatly appreciated!
Nancy


Posted By: kitanders
Date Posted: Oct 13 2007 at 10:26am
In July 07 my hand brushed across my breast and there it was- what felt like a huge lump - large marble sized.  I had missed my mammogram a month earlier due to travel for a family emergency, and had it rescheduled for over a month in the future.  Seven weeks prior to finding this large lump my gyno. had felt nothing during my annual exam.

I immediately went to my primary Dr. who got me in for a mammogram the next day.  Turns out my triple neg. tumor was 2.5 cm, early stage 2.  I have remained mystified why my gyno did not feel anything, and how/why it just appeared out of nowhere.  My surgeon and oncologist claim it could have been there for 2 to 5 years, but I don't believe they know what they are talking about with triple negs.  I have even talked to my gyno. who does not seem particularly surprised that she could not feel it 7 weeks prior to my discovery.  I trust her, and can only wonder how it could have grown from something non-palpable (1 cm. roughly?) to 2.5 cm in just 7 weeks. 




Posted By: DMB1
Date Posted: Oct 15 2007 at 4:48am
Here is the link:
 
http://www.curetoday.com/cureXtra/currentissue/archive/jan07/index.html - http://www.curetoday.com/cureXtra/currentissue/archive/jan07/index.html .
 
It is from Curextra, a quarterly online publication, published in January 07.  This is the most comprehensive discussion (so far) that I have found on tnbc research.
 
Denise


Posted By: Jackie
Date Posted: Oct 23 2007 at 9:55am
Hi,
I had my mammogram November 28, 05. I have had tenderness/pain at 12 oclock on my left breast and at the area where the breast joins the underarm for quite some time...maybe over a year. I can remember rubbing those areas since last year. Finally the pain became so urgent that I went to the gynocologist to seek early mammography. She felt nothing! (I have fibrocsytic breasts). When I told her again how bad the pain was, she wrote a prescription for a diagnositic mamm and untra sound. The cancer was obvious (this time the mammogram was digital and it was not last December). After ultrasound a radiologist came and told me to get a biopsy. I got one the next day and the results came back in 3 days. Unfortunately, I was away for work and didn't know about the triple neg grade 3 until I returned a week later. Then I began to research and was overwhelmed. I am beginning to work through the fog a little and will begin treatment after mastectomy. I think I will have TC as I have been offered TAC and TC and have 2 different heart murmurs already.


Posted By: kitanders
Date Posted: Oct 23 2007 at 11:28am
What did the Oprah article say?  Is it available online?



Posted By: MeganG
Date Posted: Oct 26 2007 at 6:09pm
I found the lump while nursing my then 1 year old.   I was lying down on my right side and reached over to check out an area of pain on my left breast.  I felt a very hard ball at the 3 o'clock position.  I had been having some pain in that  breast during nursing and I thought it was a blocked duct.  I had an ultrasound and they told me it was a complex cyst and that there was nothing to worry about.  6 months later I had weaned my daughter and went back in because the 'cyst' was painful and growing.  It looked the same as the 1st ultrasound, but bigger.  A different Radiologist looked at it and the rest is history.  Diagnosed at 33 with stage 2, grade 3 triple neg invasive ductal carcinoma.  Had lumpectomy, 6 A/C and 6 Tax treatments (over 24 weeks) followed up by 7 weeks of radiation.  Painful (and thankfully non-cancerous) lumps grew back in the same area after treatment so I had bi-lateral skin-sparing mastectomy followed 5 months later by tram-free recon at Virginia Mason in Seattle.  I am happy to say that I am living a wonderful life with my husband and kids who are now 5 and 9!  It is great to start getting information on the trip neg cancer - I have been searching for 3 1/2 years for anything other than a technical medical study on this type of cancer.


Posted By: kitanders
Date Posted: Oct 26 2007 at 6:44pm
Megan
Welcome and great to hear your story.  So you have been cancer free for about 5 years?!  That is great.   Did anyone have any explanation for the benign painful lumps that came back after your lumpectomy?  HOw big was your original tumor? How about your lymph nodes, did you have sentinal node biopsy and were they clear?  Did you get tested for genetic causes?  I am considering that now, that is why I am asking so many questions.  It certainly is good to hear of your success in beating this cancer, and I admire your strength in all that you went through.  I was also interested in why you received 6 ACs and 6 Taxols as it seems current recommendation is often 4 of each.  Did you have neulasta after each chemo too?  Sorry for so many questions, just I find your story interesting.

I am not far away- in Oregon.  Were you treated at a cancer center there?  Do you have recommendations for good centers and specialists in your area?  I am mid-treatment, so am not interested in a new oncologist,  but was contemplating a consultation with someone in our region who may know a lot more specifically about triple negatives.
Thanks
Kathy



Posted By: MeganG
Date Posted: Oct 27 2007 at 10:21am

Hi Kathy-

Thank you for the welcome - it is great to have found an area to connect with women who have faced the same struggle and to get more information on this type of cancer.  I am happy to answer your questions and would like to hear your story as well - do you mind answering the same questions later on?  Here we go:
 
- I count myself as cancer free for 3 1/2 years (from the 1st surgery when they removed the tumor in May 2004.)  Technically, I am supposed to count from when treatment ended (just under 3 years, Feb 05.)
- The Dr.'s said that the benign lumps were a rare reaction to all of the trauma inflicted to that area.  They weren't able to give me a better answer than that.  It was very weird to have experienced that regrowth and it was almost as scary as being diagnosed the first time because we were praying that the cancer hadn't come back.
- The original tumor was 3 cm, I had sentinel node biopsy with 2 clear nodes and no known node involvement
-I was tested for BRCA1/2 and was negative
-I had 6 of each treatment because I chose to be a part of a medical study that randomly assigned you to one of four arms - 6 months of chemo was very interesting!  The study is on-going and I hope that they can use the results to help in the future.
-I started getting the neulasta injection after my 2nd or 3rd treatment and continued through my last treatment - while it caused immense pain in my bones (especially my pelvic and thigh bones), I think it was worth it because my counts only got down to zero a few times and I only had to have IV antibiotics a few times.
-I live in Poulsbo and I had the option to go to Seattle or to receive treatment in Kitsap County.  I consulted with several oncologists who pretty much presented similar options and chose Dr. Willerford who works with a group in Kitsap.  Based on what I could find out about the trip neg cancer at that time, I really didn't know what to do.  My "Oncky" as I refer to him was amazing - very calm and caring but direct and never

condescending.  I was going for check-ups and blood work every three months until this past year when we started stretching to 4 month intervals and now I'm up to 6 months in between visits.  In one way this is good because my right arm has been so poked up that it is almost impossible to get a blood draw!  In another way, it is a little scary because I don't have the reassurance of the regular exams and blood work.

-I will add that my reconstruction was done at Virginia Mason by a brilliant surgeon (Dr. Paige) who is not only kind and sincere but he is truly gifted at what he does.  Unfortunately, I was part of the hospital statistic that gets an infection during or after surgery and I had some major complications.  10 days after my recon, I ended up going in to septic shock and had to have emergency surgery to re-open and flush the infection out of my donor site - they really saved my life and I have been slowly healing and able to heal up over the past year. (Mentally not so healed - I'm working on that!)
-I wish I could recommend someone in our region who is a specialist on this type of cancer.  My Oncky gives me updates when I go in and that is pretty much it.  I will look around and see if I can get more information.
 
I would really like to hear about you and what is going on.  Since you are mid-treatment, you must have so many things running through your head.  How are you handling the treatments (physically and mentally?)  Have you been able to express your emotions to anyone?  One thing I found was that no matter how much people cared and how close you were with them, there was just no way for them to understand.  I remember feeling lonely and isolated on the inside - not always, but during the rough times.  Do you have family or a good support group of friends around?  If you do, let them help because they need to feel needed.  I was horrible at this and pretended to be really strong and didn't accept as much help as I could.  I continued working part-time as a Project Manager and ran my household as well as I could to ensure that my 2 and 6 year old kiddos still had a pretty normal (whatever that is) existence.  I don't live next door to you but I would like you to know that I am here for you if you need to ask any questions (nothing is off limits) or if you just need some encouragement.   It may seem hard to believe right now but before you know it, a year will pass by and your hair will be growing in nicely, your body will re-adjust to it's new normal, and your mind and soul will be on their way to healing.  Well, I didn't mean to write so much but I think this is kind of like therapy.
 
I look forward to hearing back from you and to sharing the information we find about triple negatives.
 
Take care,
Megan LOL
 
 
 
 
 
 


Posted By: Galina2
Date Posted: Nov 09 2007 at 5:31pm
DMB1, yes, you are absolutely right! They are telling us, not to worry, the nodes are neg. BUT, considering they do only one(!) pathology slide of each node and they can make a mistake, and the probality the cancer spreads through the blood, especially with Triple Neg. How to test for this, some king of Triple Neg blood test?


Posted By: Galina2
Date Posted: Nov 09 2007 at 5:54pm
DMB1, can you post the ling, I would like to read it, too. Galina


Posted By: gayns
Date Posted: Nov 17 2007 at 11:07pm

I first noticed my lump whilst I was in the shower and my blood went cold, but the next day I couldn't really feel it and like Lisa thought may be I had imagined it.  A friend had been dx earlier that year and I thought I was being paranoid after all I am only 37 I thought.  However I kept checking everytime I showered but most of the time it just felt like any of my other normal fatty lumps/bumps, I just thought to myself next time I'm at the doctors I'll mention it.  Then I noticed it definatley did feel "different" than normal and made an appointment to see the doctor.  Unfortunately it was a doctor I do not get on well with and all the way there I kept checking my breast to convince myself there was a lump there and he wasn't going to tell me I was wasting his time.  When I saw him he said as it was painful it was highly unlikely it was anything nasty and gave me some antibiotics for an infection as it looked abit red (all that prodding on the way there I expect) I returned 2 weeks later and he said it all seemed fine, luckily although I wanted to believe him I knew it felt the same so booked to see another doctor 2-4 weeks later, as soon as she felt the lump she refered me straight away for a scan and biopsy.  I have had 8 sessions of chemo, a lumpectomy +  10 lymph nodes removed (all clear) and am halfway through my 6 weeks of radiotherapy.

Sorry this is abit long I do tend to waffle!
 


Posted By: DMB1
Date Posted: Nov 19 2007 at 9:12am
It is http://www.curetoday.com/cureXtra/currentissue/archive/jan07/index.html - http://www.curetoday.com/cureXtra/currentissue/archive/jan07/index.html


Posted By: Barb-42
Date Posted: Nov 09 2008 at 4:46pm
I noticed my lump in the shower 2 month's after a normal mammogram. I knew that it was not there the day before as I wash the same way every day. It just appeared out of no where. I sobbed uncontrollably as I was scared. I had just been dx. with type 1 diabetes about 1 1/2 yrs. earlier and I was just starting to get my life back to some what of a normalcy. I take 4-7 shots a day. I went to work till I was able to get into the doctor's that morning. He seemed to think that it was just a cyst and wanted to watch it for 2 weeks and if it was still there then we would do a ultrasound. This was right before christmas Dec. 14th. Well it was still there after 9 days and I made up my mind that if it was still there the day after christmas then I was calling for an apt. to have a ultrasound done. That is what ended up happening. My apt. was set for like 3 week's. I called the hospital and changed it. They got me in within 2 working day's New Year's eve. I had the ultrasound and as the radiologist was checking the lump he called another tech in. I said it is not just a cyst and he said no it is some type of mass which will have to be biopsied to know for sure if it is cancerous. I of course starting crying. By the time I got home my doctor was on the phone telling me to go back to the hospital for a biopsy. I got my phone call on Jan. 2 telling me that I had cancer.

-------------
dx-1/2/08 @ 42 yrs.old
lumpectomy w/close margins/ 1/14/08- no nodes/stage 1/gr.3
1.5 CM IDC
chemo-AC-3 Dose Dense
Taxol wkly 12- 2/21/08-7/17/08
Rads-33 w/8 boosts
8/6/08-9/22/08
BRCA 1/2 Neg.


Posted By: traceym
Date Posted: Nov 26 2008 at 4:11am
Ditto here.  Had reg. checkups and started mammograms earlier than most due to family history. I self examined 2x monthly. First part of June 2008 it was not there. No change at all in breast feel or appearence. Mid June huge lump. I was actually out of town taking care of my father in law who was dying of lung cancer. Having lost my sister from breast cancer very young (she was dx at 27 and died at 30) my first thought was "is it my turn?"  I kept an eye on it myself to see if it would change in any way. When it didn't,  I got advice from friends and family members who had had cysts and they said there's just showed up" Even talking to my doctor "confirmed", cancer does not just show up cysts do. So I waited until I got back home after my father in laws death in late Aug. and made an appt. with my doc. She was "sure it was a cyst", but because of family history she had me go to our breast center for a diagnostic mammogram. Everyone was so unconcerned that I went to the appointment alone telling my husband there was no reason for him to take more time off work. After the mammogram I met with a surgeon who assured me even after getting family history, and doing an exam herself that this was a cyst and they would drain it under ultrasound. The ultrasound showed a solid mass. They sent in a radiologist who biopsied it on the spot. Even then they gave me pamphlets on fibroids. You can imagine how I felt to get the phone call 2 days later from the radiologist that I had IDC,  grade 3 cells. So much for the theory that "cancer doesn't happen that way".
I know this post was started over a year ago, but this information is SO important. Doctors and other women need to know that it DOES happen this way, and why wait 3 weeks or the typical 6 months to run tests to be sure of what it is. My tumor was over 5cm when they removed it, Stage 3 TNBC. Could we have caught it at stage 1 or 2 if I or my doctors had this information just a few months ago?
I am ok! :-)  but could we help other women find it sooner...I pray we can!


-------------
Age: 40; DX IDC TNBC 10/02/2008
Stage 3 grade 3
Bilateral mastectomy 10/27/2008
5.3cm 0/5 nodes BRCA 1+
chemo ACT by-weekly 12/08 - 4/7/09 (plus Avastin)
Radation to start in April


Posted By: krisa
Date Posted: Nov 26 2008 at 6:23am
Tracy,
I tell everyone to do breast exams and to be proactive.  When I found the lump, everyone assured me that it was probably a benign lump, since 80% of lumps found, are.  Gave me a false sense of security.
 
when I got the cancer diagnosis, once again I was told that I should have surgery within 3 months-there was no need to rush-that the cancer had been there for years.  This was last December-doctors all seemed to be taking time off-my surgeon wasn't going to be able to perform surgery until the middle of January.
 
A little voice inside said you have to have surgery soon!  I was going to change surgeons and as I went to schedule a surgery with my surgeon (as a back up, in case I couldn't find a doctor to do surgery sooner) the gal said that there was a cancellation and so I had surgery 10 days later.
I found the lump on December 2 and had surgery December 28th--the lump grew!
Protocol needs to change---grade 3 cancer cannot wait-


Posted By: ziggy0
Date Posted: Dec 22 2008 at 4:36pm
Hi all.  I am struck by how often tnbc lumps (a) come out of nowhere (grow fast) and (b) are often located far away from the nipple, seemingly out of breast tissue.  Mine was as well, with my primary-care doctor first hypothesizing that it was a lymph node enraged from wasp stings I had received (another story) but that if it didn't resolve in two weeks to see a doctor she knew who had an ultrasound machine.  And so it went ... 

I have another bit of information for you and your doctors that I think may be important for tnbc patients.  In my case they did not remove the lump as it was too close to the pectoral muscle.  I had neoadjuvant therapy, meaning chemotherapy before lumpectomy.  My first course was A-C and it went well--during those eight weeks the 2-cm lump softened and was only barely palpable.  My oncologist still wanted to do another course of chemo, however, to wipe it off the wall of my chest.  I was in my third of 12 weekly infusions of Taxol (paclitaxel) when I felt a hard, ball-bearing-sized lump that seemed to be where the original lump had been.  We were coming up on the holidays (2008) and one more Taxol infusion and a couple more weeks slipped by before another ultrasound confirmed a 1.2-cm lump (it had grown) exactly where the first mass had been.  Somehow, the tumor was resistant to Taxol. 

I am now undergoing my first of six courses of gemcitabine and carboplatin, and visually the tumor seems smaller (I have not been feeling of it until enough time passes that I will know with certainty whether or not it is responding).  The plan is to do the lumpectomy after the second cycle of G/C and then, assuming the tumor will have responded, mop up with the remaining four cycles of G/C. 

The two points that I want to get across to people is that my tumor was somehow resistant to a chemical that it had never been exposed to before, and, had I already had the lumpectomy, I would never have known that it was resistant.  And chances are it would have metastasized within a few years, as triple-negative tumors are wont to do. 

I wonder why neoadjuvant chemotherapy is not more the rule than the exception.  




-------------
Dx IDC 8/08/2008
TNBC stg 2 grd 3
T1c N1 M0, Ki67 97%
Neoadjuvant A-C, Taxol (failed), gemzar/carboplatin
Lumpectomy 1/09, completed G/C 4/24/09
0/6 nodes positive
Radiation 5 wks


Posted By: krisa
Date Posted: Dec 22 2008 at 5:09pm
protocol for tnbc needs to change. thank you for sharing your experience.


Posted By: Nancy
Date Posted: Dec 22 2008 at 5:11pm
Evening ziggyO,
 
Welcome to the site and I would say that you have a really good primary care doc, in that she did not tell you to "watch it" for 6 months. There have been so many gals tell us that story, and they were then dx with a 5cm malignant tumor. Kudos to your doc Clap
 
My daughter Lori did not have a choice as to neoadjuvant chemo, as they screwed up as to the reading on an ultrasound, and said that it was a fibrodenoma cyst. She just wanted it out as it "hurt". (They said cancer does not hurt) It was a 5cm malignant tumor, and after a MRI, another one was found behind the nipple, so thusly she ended up having a mastectomy after the lumpectomy.
 
Many of the gals are having neoadjuvant, and they are seeing the tumors shrink. You are so right that you would not have known that it was resistant to the Taxol. May I ask what information has led you to decide on a lumpectomy and not a mastectomy?
 
Is there a history of cancer of any type in your family? Lori had the BRCA gene testing and is negative, and in hindsight, she should have had the test before surgery or chemo. We did not know at that time of the importance of the test. Lori's maternal great-grandmother died of ovarian cancer, but the closest relative was my husband's sister who was dx with bc 13 years ago.
 
May I ask your age? Lori is 46 and her stats are at the bottom of my post.
We live in Altoona, PA, but she had surgery at Magee Women's in Pittsburgh and her chemo and rads here.
 
We have chemo and rad tips here on the site and they are almost always on the last page of the TNBC News, Resources & Tips forum. Perhaps they may still be useful, and they are from all the gals here on the site.
 
Please post with any suggestions that you may have and if they are not in the tips, I will add them.
 
Hugs,
Nancy
 
 
 
 
 
 


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: ziggy0
Date Posted: Dec 23 2008 at 9:10am
Hi, Nancy.  Thank you for the pointer about the chemo-and-rads information; hadn't explored the site much yet.  I am so happy to find a group with this issue in common, and also to answer your questions. 

At the time of my diagnosis last August I was postmenopausal and 57-going-on-58; have now turned that birthday corner.  There is no history of breast cancer (as my mother keeps reminding me) in my family, and no other cancer save lung cancer in a grandmother who smoked.  My oncologist said that I was 'not a candidate' for genetic testing, probably because of that lack of history. 

I never really considered having a mastectomy, although at the time of the second ultrasound after the Taxol failed and the tumor returned the radiologist, pointing out the myriad calcifications in both breasts, seemed to hope I would decide in favor of one (or two).  (What percentage of tnbc women have dense, cyst-prone breasts?)  The reason I haven't considered mastectomy at this point is that, contrary to what a lot of women believe, it would not guarantee that tumor could not return to the scar tissue.  In your daughter's case, of course, with tumor behind the nipple she did not have an option. 

We live in Boulder, Colorado, and a brand new center of the Rocky Mountain Cancer Clinics is within two blocks of our house.  There is a downside to choosing convenience over a research hospital, however, and that is of course that lack of a researcher's natural curiosity, and the tendency of a non-academic clinic to treat by the book.  In any case the general lack of data collection for apparently obvious points of commonality in tnbc--what percentage are grade 3?; what percentage are at the outer breast margins?; what percentage do not respond to taxanes?, what percentage are very tender or hurt?--is frustrating. 

As for tips, ladies, I believe it is very important to remain as active as you can.  There were some days during the A-C that I had to practically whip myself out the door to walk as briskly as I could for at least a half an hour but I did so, and overall I seem to be tolerating the chemical abuse to my body fairly well. 

Maybe I should be visualizing 'liquid gold' flowing through my veins, but I'm afraid my imagination is not that obedient.  I am a medical writer and way before this happened to me I would rail against the brutality of chemotherapy.  Now my general stance hasn't changed, although of course I'm grateful that there is the chemo option rather than no chemical mop-up plan. 

Also, we need to accrue all the knowledge we can about this disease, and apply it critically to what our health practitioners are doing for us.  They're busy and they can make mistakes or poor judgments, and it is up to us to evaluate what they do to our bodies. 




-------------
Dx IDC 8/08/2008
TNBC stg 2 grd 3
T1c N1 M0, Ki67 97%
Neoadjuvant A-C, Taxol (failed), gemzar/carboplatin
Lumpectomy 1/09, completed G/C 4/24/09
0/6 nodes positive
Radiation 5 wks


Posted By: Nancy
Date Posted: Dec 23 2008 at 10:41am
ziggyo,
 
I added your tip and I hope you don't mind, I just copied and pasted it in the chemo and rad tips. Thank you.
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: ziggy0
Date Posted: Dec 23 2008 at 3:46pm
I do not mind at all  that you posted that tip, Nancy.  And although I have seen this on another thread (Discussion forum:TNBC Forums;TNBC Talk--Questions from a newbie), I want to emphasize to everyone undergoing this disease to stock up on knowledge and question authority--well, to put it more mildly, take an active interest in your treatment; do not leave it entirely up to the professionals because they are human and quite capable of making misjudgments and errors.  It is your body and ultimately your decision as to how you will be treated. 

Nancy, you are a true power on this site--Thank you for all your effort and support and warm assistance. 

--jackie



-------------
Dx IDC 8/08/2008
TNBC stg 2 grd 3
T1c N1 M0, Ki67 97%
Neoadjuvant A-C, Taxol (failed), gemzar/carboplatin
Lumpectomy 1/09, completed G/C 4/24/09
0/6 nodes positive
Radiation 5 wks


Posted By: Nancy
Date Posted: Dec 23 2008 at 5:33pm
Jackie,
 
Thank you for your kind words. You are so right as to knowledge. Each person must be their own advocate, and we know that those in the medical profession (as well as all other professions) do make mistakes. The ultimate decisions are up to each indidvidual.
 
I can remember when everyone thought that the docs were gods, and never questioned their authority....as if they really ever did have authority! With the internet only a key stoke from our reach, we can now question them. (Actually I always have questioned everything and everybodyWink)
 
Just the other night on the ABC nightly news, a woman actually diagnosed her own medical condition. She had Lymphoma and the docs never dx it as that. She could have died. She found the information on the internet, and that is what saved her life. Many false claims on the internet, but also much useful information also.
Hugs,
Nancy
 
 
 
 
 


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: trip2
Date Posted: Dec 23 2008 at 6:46pm
Jackie I absolutely agree with you that we are our best advocates.
That is why one of the things I suggest to new ones being diagnosed is to get a copy of her pathology report, all scans and tests.
 
Sometimes these Docs overlook things that they aren't trained for but could be important for you.  Also it gives you a copy to go in with if you might have questions.  They don't usually show you the report just say oh it was ok or whatever.
 
I caught a terrible mistake last year that way so learned the hard way.
 
Merry Christmas


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: jlmp11
Date Posted: Jun 25 2009 at 3:11pm
My lump also seemed to have come out of nowhere.I had just been to the gyno for my yearly exam, 2 months prior.Nothing. I do self exams usually weekly in the shower.But I was laying on my side in bed one night, and scratched my chest.Surprise- it was deep center on the pectoral muscle.Did not show on mammogram, due to dense breasts.You could see it on the ultrasound, but the mri was by far the best image.

-------------
marcie
dx 1/09 triple neg.
stage 2 grade 3
idc 2.7 cm
mastectomy 2/09
chemo 3/09 4 ac biweekly, 12 taxol weekly dose dense
brca neg.
0/3 nodes


Posted By: ziggy0
Date Posted: Jun 25 2009 at 3:56pm
My lump never would have shown on a normal mammogram as it was so far out toward the shoulder--on the verge of the axilla.  My primary-care doctor, when I showed it to her, said it wasn't even in breast tissue and thus must have been only a lymph node upset by the wasp stings I had accrued as I ran from the nest I had inadvertently jostled.  However, she also said that if after two weeks it remained to go to a colleague who had an ultrasound machine, and so I did. 

But that aside, Marcie, a lot of us seem to have dense breasts. 


-------------
Dx IDC 8/08/2008
TNBC stg 2 grd 3
T1c N1 M0, Ki67 97%
Neoadjuvant A-C, Taxol (failed), gemzar/carboplatin
Lumpectomy 1/09, completed G/C 4/24/09
0/6 nodes positive
Radiation 5 wks


Posted By: musette green
Date Posted: Jun 25 2009 at 9:27pm
I  had annual physical. My doctor did what seemed to be a very complete breast exam and did not detect any lumps or swelling, neither did I in my own weekly breast exams. 3 weeks later I began having pain in the left breast and left axilla,but no lumps or fever.  I saw my MD and was prescribed  a 10 day course of antibiotics for what was thought to be a case of mastitis. The pain faded slightly over the following 10 days.  2 weeks later at my yearly mammogram a large lump was found. I was surprised because I still couldn't feel a lump in my breast, only a golf ball under my left axilla. I was told that this was possibly an abcess from the mastitis or simply a fibrocystic issue that I have dealt with before. A week later the mammogram was repeated on the left breast with an ultrasound done on the same day.  I was told after the ultrasound that I needed to have a  biopsy done to rule out an abcess in the breast. The biopsy was done on a Friday morning and Monday afternoon My doctor confirmed a diagnosis of invasive ductal carcinoma.
Mammogram revealed that the lump was deep in the left outer portion of the breast against the chest wall. The oncologist thinks that is why it was not found by palpation.
Lisa


-------------
DX 10/08. IIB,gr 3, 2.5cm. TNBC, BRAC1&2-, nodes+(left axillary, supraclavicular, ant. mediastinal & IM). Neoadjuv. chemo 4x C/T. Left mast.3/09,completed 40 rads 9/09. Reconstruction pending.


Posted By: Lillie
Date Posted: Aug 18 2009 at 4:11pm
My lump was found at my annual mammogram in late May of 2006. I sat while the radiologist read the mammo, the nurse returned and said they found something suspicious on the mammo and took me into another room and did an ultrasound on the spot. She said the hospital would send a copy of my ultrsound report to my MD and he would contact me. Three days later I was contacted by my MD's nurse to let me know that the lump was indeed a mass, not a cyst, and that an appointment had been arranged with a surgeon for a biopsy. I really was not scared because I'd had fibrocystic disease for years in both breasts. I'd had at least 10 cysts aspirated in my late 40 and early 50's. I also had 1 lumpectomy when I was 46. It turned out to be nothing. I also read a newspaper article stating that women who were taking "Evista" (which I was to protect my bones) were almost as protected as women taking "tamoxofin" from having any significant cancer risk.   

I had the biopsy on Wednesday, June 7, 2006 and on Friday afternoon, June 9, 2006 the surgeon revealed to me that I had ductal carcinoma. He said it was approx 2 cm and he could do a lumpectomy and I might not even need treatments. I said, "no way, I want a mastectomy; I want it all off". The surgeons colleague tried to persuade me to have a lumpectomy, but I refused. Anyway, on Thursday, June 15, 2006 I had a left mastectomy with sentinel node (took 3 nodes). I was initially told that everything looked good, no node involvement, good margins, etc. Upon more extensive testing by an out-of-state lab it was revealed that I had "triple negative" breast cancer with involvement in 1 lymph node. At that point the surgeon said the standard of care was to do more surgery and take out more nodes. "I had a total melt-down that Monday, June 19, 2006 in the surgeons examination room". I saw an oncologist on Wednesday to see if he though I would need chemo, but also to see if I needed a port put in. He said, "Yes, you need chemo and Yes you need a port". On Thursday June 22, I had a port put in and 9 more nodes removed, all of which were negative, Thank God!.

I thank God every day that the oncologist who treated me was very informed about "triple negative". He even had the lab run a set of test called "FISH". Not sure what that all stands for, but I have found out that it was very important in getting a complete diagnosis of my situation. My oncologist explained to me how the "Evista" probably would have been my friend if it had been hormone related, but with "good ole' triple negative" it wasn't worth a hoot.

Love in Christ




-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED


Posted By: Tedaii
Date Posted: Aug 20 2009 at 5:19pm
Dragon boat team of Breast Cancer survivors:
http://www.wasabiusa.org/dragonz.shtml#soar - http://www.wasabiusa.org/dragonz.shtml#soar

http://www.pinkphoenix.org/ - http://www.pinkphoenix.org/

I'm sure there are more.  These are just ones in the area where I live.  My mom heard that the paddling for dragon boats seems to relieve lymph edema.

My mom found her lump 'totally out of the blue' one day while she was getting her swim suit on.  It wasn't high up though more along the side sort of close the to the nipple.  She said it was the size of her thumb.  By the time the did her mastectomy it was over 5cm in size.  She said her self exam the month prior, it was not there nor was it in her mammogram six months prior.









-------------
Teresa,
DM Patricia dx 6/09 IL TNBC, bilat mastecomy 8/09,nodes +, Stage IIIc. PET scan neg! Chemo AC dose dense for 4 cycles, on 3rd cycle



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