BRCA 1 and TNBC - Anyone out there?

I received a call from my bs and they spoke to the radiation oncologist. Apparently they consulted doctors in Ontario and made the decision based on thier recommendations. She is comfortable with their decision and doesn't feel a second opinion is necessary however she will refer me if I feel strongly about it.

I haven't decided. I don't know if I want to bother. I will be going for a ooph. in the spring and I don't want to have to delay that for a treatment that the drs don't think I need.

So my dr presented to the tumor board today and the decision was inconclusive.    All agreed that they would recommend more treatment but there were varying opinions as to what drugs to give me due to risk of toxicity (specifically more Adriamycin or Cytoxin).   She wants to send me to U of A medical center for a 2nd opinion.   They have an entire team there that specializes in genetic issues.  

So my question is....has anyone had a 2nd primary bc diagnosis and if so, what treatment were you given 1st time vs. 2nd time?

Hi!  I posted this on another conversation before I found this one.  I hope that's ok!  I am BRCA1 positive & had TNC, invading 1 lymph node. 

Hello my fellow fighters!  I will try to make this short.  I am having a hard time deciding whether to get radiation or not.  I had been told all along by the surgeon & medical oncologist that it would not be recommended.  After surgery & chemo, my med oncol said I was cancer free & good to go (I was so happy!)  Then I saw a radiologist and he recommended it.  I got a second opinion at a University Hosp, in which they recommended radiation, plus more chemo!  They are suggesting Adriamycin now too.  I am discouraged.  I thought I was done with treatments.  I watched my Mom go through bad side-effects from chemo & rad and the rad eventually led to esophageal cancer & her heart failing.  I know the rad was very intense back then & is a bit different now.  I want to live, but I want to have a good quality of life too. I also have chronic fatigue syndrome, which does not help.  I don't know if the risks of the side-effects are worth the reward of rad possibly helping.  I also have 3 cousins who have had BC.  I don't know if they were triple-neg though.  It recurred in 2 of the 3. It looks like a lot of you ladies have had different types of chemo than I did.  Any suggestions or opinions?

After reading many of your posts, it seems that TNC is more aggressive than I thought.  I can't believe this is happening to so many women.  I didn't realize I had you out there until today.  Thank God for you!

May I ask a question..is BRCA1 testing not done on patients after a certain age?  Does anyone know the reason for this?  My aunt (mother's sister) died from ovarian cancer, and my 1st cousin also (my mother's neice).  I am told the testing is not done past 50.  Is this true?  Appreciate the info. 

Waitingforthenextstep - I am not aware of any age limits for the test.

@waiting:im in canada and ii had genetic testing done when I was 51.and a bc survivor of 8 years at that time . My second sister had been dx with bc that was 6 years ago the genetic councellor wanted to test me and not my sister because my first bc I was premenopausal and my sister was post menopause when she got bc although I was post menopause when I got the testing done they thought I was a better candidate because they said my sisters bc could be because of her menopause status at the time she got the bc and then that would be a different bcso anyways that might be the reason they dont like to do it at that age.

Welcome to our little group!  I wish none of us had to be here.  There is a lot of good info out there about triple negative bc.  I'm sorry about your aunt & mom.  Myself and 2 cousins tested positive for brca1.  My Mom & another cousin had to have had it too.  All 5 of us have had bc young.  The ladies on this site are quite knowledgeable about tnbc.  It's an aggressive cancer.  You can do this!  Stay strong.  You, myself & jenjenl seem to have similar cases.  You can private message me if you want.  The triple negative breast cancer foundation's site is tnbcfoundation.org. 

I have not had radiation yet and don't know if I will just based on my own research.

I had a masectomy on right side and 6 lymph nodes removed and had one round of 3 FEC then will do 3 rounds of DOX .

Hi there! I am 33 years old and was diagnosed with TNBC in Feb and also found out that I am BRCA1 positive. I was told by my grandmother that I am now the seventh generation to have gotten breast cancer. I am also the youngest. I have three children ages 14, 7, and 6. I started my first round of chemo, ACT,  on April 2nd and go in for round 2 on Wed. It's so comforting to see that there are similar situations to mine out there. I was beginning to feel alone...

MtnGirl, I will also be doing rads and after talking to my MO, who I really respect and trust, I feel much better about it and see the need. Basically she old me "the way my disease presented itself, my team agreed to go for the most agressive treatment in chemo AND radiology to give me the best chance of no recurrence" that's all I had to hear and brought a reality to my situation tht I didn't really want to hear, but had to. I will have another apt. with RO to discuss specific concerns but wll also welcome the "big guns" in July, although I'm still very afraid of SE.

Off to meet my BS for surgery date. One step closer....

well, things did not go as planned. Need chemo and radiation. Cervical cancers margins are too wide. I guess it is not a breast cancer topic, but I did not have any other support forum.

Hi Ladies, I'm TNBC & BRCA1 and I just wanted to give you some info of what I just went thru that I hope can help someone else who is going thru this journey too. After a local recurrence I went thru a series of Gemzar/Carbo with little or no response so my onc put me thru a series of Irrenotecan/Cisplatin(low dose) and I have had a wonderful response. Here's a little nugget for you: Irrenotecan is used primarily for colon cancer and is not on the 'approved breast cancer list for insurance' so your onc needs to go to bat and show that research shows positive results (its there). Apparently, my onc has had very good results with TNs in particular. You also need to go on a modified BRAT and low fiber diet as it can cause loose stools but all manageable if you don't let that horse out of the gate!

I am still here. My sister is waiting on her nrca results, she was just diagnosed with tnbc. I find it beyond coincidental that she is diagnosed wih the same cancer as I had just as I am finishing up my treatment.

Hi journey4life- still here, though not as often.  Reading more than posting.

Research has turned up a number of second cousins sharing the mutation.  I am glad they have the information! Some of the next generation have had the opportunity to be proactive.  Have any of you been involved in studies at the Abramson Centre at the University of Pennsylvania?  Any experience or thoughts regarding other opportunities to help with BRCA research and treatment?  FORCE mentions a few options, but any comments from participants? 

Sharing thoughts and experience is so important.  For those in line for prophylactic ovary removal- my mom had two primaries- ovarian and endometrial- so I had no problem pursing a complete hysterectomy (cervix too), and two years out, at 51 yrs, I am really glad it is all gone.  My diagnosis included lymphatic and vascular invasion (which I understand equates to 1-3 positive nodes), but because I had chosen a mastectomy I was told radiation wasn't necessary.  This was pre BRCA1+ results.  I haven't revisited this with the oncologist, but am curious if we would have made a different decision had we known.   At the time of my first surgery I was told if I chose a lumpectomy I would have had to have had rads.  There is no follow up here with oncologist, post chemo, but if I have any concerns my GP has me in and addresses them fast.  For my lifestyle (we ranch, live in a cold climate, and I am active - cross country skiing, horseback riding etc) I have chosen not to have reconstruction.  At this time I am happy with my decision, and find it much easier to go "with-out" most of the time, and prosthesis when I choose.  

I am 4 years out from primary diagnosis, 2 years out from prophylactic surgery, and wanting to do more so others don't have to go through what we have!