BRCA 1 and TNBC - Anyone out there?

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  • jcolford
    jcolford Member Posts: 120
    edited March 2013

    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.

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2013

    Good for you JColford.  That's reassuring, are you still proceeding with a 2nd opinion?

  • jcolford
    jcolford Member Posts: 120
    edited March 2013

    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.

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2013

    That's a good point, and sounds very reasonable!  :)

  • susan1231
    susan1231 Member Posts: 6
    edited March 2013

    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?

  • Time4life
    Time4life Member Posts: 73
    edited March 2013

    Jcolford - I am BRCA1 and TNBC. I had mastectomy in one breast with 5/9 positive lymph nodes. My other breast was removed prophylactically and was clear. My tumor size was just under 4cm. I did received chemo and radiation. There was no question by my oncologist about rads. I did have the ovaries and tubes removed and thankfully, all clear. Remember, the uterus is not usually affected with BRCA1/TNBC, but the ovaries and Fallopian tubes are the ones at risks. Hysterectomies come with more issues, so just tubes/ovaries are recommended.....of course this always depends on the person's case.

    Good luck with your decision making.

    Des.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2013

    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!

  • jenjenl
    jenjenl Member Posts: 948
    edited March 2013

    MtnGirl - We have so many similarities in our dx.  I am in the same boat and I am doing radiation - I am being as agressive as I can given my age.  It was a few discussions with many doctors and in the end it was a "soft call" and my DH and I decided to move forward with it.  I had 18 weeks of TAC (Taxotere, Adriamycin, Cytoxan), my last on is coming up 4/2.  You have two opinions recommending it so that's something to consider but in the end you have to be comfortable with it.  PM if you want to chat.

  • Waitingforthenextstep
    Waitingforthenextstep Member Posts: 251
    edited March 2013

    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. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2013

    I think you should definitely go for a second opinion, jcolford.  I did.  I didn't get the results I wanted, but it was a good thing to do.  3 of 4 of my drs have now recommended radiation.  I don't want to do radiation.  I am afraid of radiation.  95% of my friends & family don't want me to get it.  I will take all of the opinions I get, and then make the decision that is right for me (I hope).  They say knowledge is power.  Then again, too many opinions can confuse a person & as you said, delay treatment.  I wish none of us had to make these decisions.  Here's to finding a preventative for cancer.  Thank you all for posting here!  It is eye-opening and so helpful!

  • jenjenl
    jenjenl Member Posts: 948
    edited March 2013

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

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited March 2013

    Waitingfor.. i was the first one in my family to have the test and was 57 and brca2+.  In my family, mother & 2 aunts (breast cancer before gene discovered), one cousin- BC two years before me and chose not to get test, we all got BC in our 50's.  I recently heard of a 70 something mother of two daughters in their 50's, one with ovarian cancer, get tested.  She did not have cancer, but was brca2+.  There is no age limit.  My health insurance required me to have cancer in order to be tested...not sure if that would be the requirement with a known brca blood relative.  No age limits.

  • anamerty
    anamerty Member Posts: 195
    edited April 2013

    @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.

  • TasiaB
    TasiaB Member Posts: 39
    edited April 2013

    Hi everyone ..

    Just found this forum

    I am 25 years old with 2 kids 7 and 4 and just to married two months after getting married found out I have triple negative stage 2a grade 3 invasive ductal carcinoma .

    Found out my tumor was 3,5 by 3 and had medullary features and had lymphocytes surrounding it .

    I am going to get genetic testing done as my moms sister my aunt was diagnosed at 37 in right breast did masectomy with chemo was good for 10 years then diagnosed at 47 in left breast did chemo and radiation. And Is now 58 and doing well but she chose not to get genetic testing done ... So then my mom was diagnosed with breast cancer at 39 and had a bilateral masectomy just knowing her sisters history and was triple neg she did Chemo and radiation and was good for 2 years and metastisized to her lung had part of lung removed and more chemo then moved to brain and then bone ...she fought hard but lost her battle two years ago at 45 and miss her like crazy just found out when I got diagnosed she was braca 1 positive which leads me to believe I probably will be too.

    I also have 3 younger sisters I worry about ...

    Just started chemo march 21 I am doing 3 rounds of FEC followed by 3 rounds of doxy not sure about rads because I had right masectomy with no lymphnode involvement ...

    So I guess once chemos done will have to do genetic testing and figure out what to do.,.,.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2013

    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. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2013

    If you got radiation after mastectomy, where did they radiate you?  I had 1 dr recommend the chest wall, axillary area & clavicular nodes.  The other recommended the chest wall, clavicular nodes & boost to the scars (she said since i had a dissection, there were fewer axillary nodes & they didn't want to damage the area further & make lymphedema more likely).  I'm worried about the scar boost for my reconstruction.  Thanks! 

  • TasiaB
    TasiaB Member Posts: 39
    edited April 2013

    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 .

  • slv58
    slv58 Member Posts: 1,216
    edited April 2013

    MtnGirl, I am in the same situation trying to decide on rads. It's so hard to know what to do. My RO wants to be very aggressive, chest wall, axillary and supraclavicle, and clavical. I did not have any scans done as they wanted to get me I to chemo ASAP. I did have a "cloudy" node aspirated when I had my biopsy and it came back negative. My tumour, has responded really well with chemo-I have two treatments left. Then lumpectomy. I am really scared of the negative SE with having this much rads. Now I've read about damage to the heart. Mine is on right side, but it is still scary. I'm just not sure why he wants to be so aggressive, I guess either another opinion or another visit to ask why. I'm also scared of LE and how that will affect quality of life. I love to golf and swim and would hate to have to give that to cancer as well. I find this the most scary for some reason.

  • jo92879
    jo92879 Member Posts: 12
    edited April 2013

    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...

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2013

    Welcome Jo92879! You are definitely not alone.  I have found comfort in reading other women's comments & having support here.  slv58, I have decided to do radiation.  In my heart, I don't want to, but my brain says to do it.  So, I'm calling this week to get that started.  I think it's the best choice for me based on all the info i've gathered here, online, & from doctors.  Somehow we will all get through this!  Take care!

  • slv58
    slv58 Member Posts: 1,216
    edited April 2013

    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....

  • Time4life
    Time4life Member Posts: 73
    edited November 2013


    hi, been away for a bit. I had the ovaries and tubes out and despite thinking I should have full hysterectomy, I let hem persuade me for the 'gentler less invasive' surgery. Well, here I am 18 months later with a new diagnosis of cervical cancer.


    So in the end, I will now be getting a radical hysterectomy anyhow.


    As a bonus, I had bonescan as a follow up, and there are increased areas on my sternum lighting up. I started dragon boating this year...so I sure hope it is changes in relation to all the hard paddling. Tomorrow I have my chest/and/pelvic CT scan.


    On a sarcastic humorous note, I have a 3rd ribbon now ;o

  • Time4life
    Time4life Member Posts: 73
    edited November 2013


    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.

  • journey4life
    journey4life Member Posts: 517
    edited November 2013


    Hi everyone - it has been way too long since I posted! I hate to see our numbers increasing...when are they going to find a cure for us TNs with BRCA1 & 2??


    Time4life - I'm dismayed by your recent diagnosis and the additional surgery you're facing. With my second dx (ovarian), I also thought it wasn't really a breast cancer related topic but I stayed here anyway. I hope you'll do the same. We all need support, no matter what our diagnoses are. Will you be having surgery before chemo and rads?


    I've had 2 PET scans and on both, my thyroid has "lit up." Had a biopsy and it was negative for cancer. I hope your lit areas test negative!


    November is my Cancerversary month - in '11 dx with BC, in '12 dx with OvC. I'm holding my breath until December! Only a few more days to go...


    Wishing everyone a happy, healthy Thanksgiving. Stay Strong - we can (and will) do this! Lisa

  • LovieLovie
    LovieLovie Member Posts: 68
    edited December 2013


    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!

  • journey4life
    journey4life Member Posts: 517
    edited January 2014

    I didn't realize how long it's been since I was here last. Are any of you ladies still posting? 

  • sweetpickle
    sweetpickle Member Posts: 749
    edited January 2014

    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.

  • journey4life
    journey4life Member Posts: 517
    edited January 2014

    Heather - congrats on NED! I'm sorry about your sister's dx. I can't imagine what your family is going through. 

    After finishing carbo/taxol the end of June, I've been monitored by MO & gyn onc with normal labs etc. until December. My CA-125 went from the teens to 52; had it rechecked last week and it's up to 125. I had a CT scan before the January labs that didn't show anything remarkable. Because of rising CA125, I'm having a PET on Tuesday. I'm worried the OvCa is back...having major scanxiety here. I hate FC!

  • JJ62
    JJ62 Member Posts: 65
    edited January 2014

    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!

  • JJ62
    JJ62 Member Posts: 65
    edited January 2014

    Hugs journey4life!  May Tuesdays PET bring good news!

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