Newbee and Scared

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bigbach0205
bigbach0205 Member Posts: 1

Just recently I was DX with Triple Neg BC.  I am a 38 year old mother of 2 beautiful little girls, and I will fight like hell to be here to dance at thier weddings.   But I have to admit that I am scared.  My Mother had BC est+, when she was 43.  I was tested for the BRCA Gene and I don't have it (counting my blessings).  My tumor was less than 1.5 cm and they took out my sentonal node and it was neg.   Mine is a grade 3 though.   I have just underwent a dbl mastectomy with imediate reconstruction.  I start chemo hopefully April 8, it was put off a bit becouse of a slight infection.  They are not doing radiation becouse there is no breast tissue to radiate.   I guess I am looking to reach out to anyone with triple neg.   it is so hard to talk to others who have E+ or "tamer versions of B/C"   Ours is a horse of a different color.  Look foward to hearing from you.

Comments

  • lmcclure4477
    lmcclure4477 Member Posts: 180
    edited March 2013

    I am sorry to hear that you were diagnosed Triple Negative. I was diagnosed in January Stage 1A with a tumor 1.1 cm. they removed five lymph nodes all were negative. I also had a mastectomy and I am currently halfway through chemo. I also will not have radiation. I am 35 years old and also a mother to 2 little kids. I am here for you if u ever need to talk!

  • lostinmo
    lostinmo Member Posts: 922
    edited March 2013

    bigbach-sorry you are joining us, but wanted to say welcome.

  • yellowdoglady
    yellowdoglady Member Posts: 349
    edited March 2013

    This isn't a club we want anyone to join, but there is so much reason for hope.  TN is always grade 3, so don't let that frighten you more than the TNBC diagnosis has.  The bad news is that TNBC is not to be trifled with; it is a mean beast, and it must be treated, and soon.  The good news is that it tends to take to treatment better than the hormone positive varieties. 

    It is possible to be just fine afterwards.  Just be your own advocate.  No one can speak for you as well as you can.  Good luck to you.  

  • angelsaboveus
    angelsaboveus Member Posts: 298
    edited April 2013

    Hi bigbach....just a few words of encouragement...

    I too had Triple neg....now 5 years out of dx and treatment ..mx, chemo and rads!   There is lots of hope for us triple negs...It responds well to chemo.  I had 5 positive nodes and tested positive for BRCA1 and as far as I know I am clear of cancer right now.   I have been having regular mamos every 6 months but right now they would like for me to have an mri and mamo yearly because of the risk factor with the brca1 or until I have another mastectomy.

    It is scary at times especially in the beginning...but lots of positive outcomes even with being negative !

    Good luck with your treatment.

  • downinnc
    downinnc Member Posts: 3
    edited April 2013

    I was dx the day b/4 my 38th bday.  April 8th will be two years out of chemo and Sept 13 is 3 yrs out from surgery.  I had dble mas. 

    I am sorry that you have to join the TN club.  All i can say is go day by day, procedure by procedure.  Everything happens so fast it sometimes feels like everyone is making the decisions for you.  If you have questions or concerns ask for a time out and explanation.  I wish I could say that it is easy, but it is the hardest things I have ever done.  Choosing to remove my breast, go through chemo, the reconstruction.  I got MRSA after my first surgery, so I had some delays in reconstruction.  But it is working out.  I didnt do nipple replacement and I got tattoos that I am currently having redone by a cosmetic tattoo artist. 

    Keep your head-up, take it one day at a time and always know that there are people out there that are there for you. 

    Best of luck.

  • placid44
    placid44 Member Posts: 497
    edited April 2013

    Bigbach,



    The fact that your sentinel node was negative and you have a small tumor are very good. Great job on finding it early...that can be hard to do with triple negative.



    I would recommend starting chemo very soon, as you are planning. Also just FYI you could still have radiation after a bilateral mastectomy (I am now....there can be stray csncer cells in the skin or the mastectomy scar), but with negative node and small tumor they may not think it is necessary.

  • Awaywego
    Awaywego Member Posts: 16
    edited April 2013

    I was diagnosed in March 2009 at the age of 41 with a small tumor, grade 3 with clear lymph nodes. I too had two small girls at the time and a mom who had ER+ breast cancer in her late 50s. I tested negative for the BRCA gene. I wanted to reach out to you as I felt such a similarity in our stories. I am sorry you have to go through this but want to encourage you that you caught it early and chemo is very effective for most triple negative cancers. While chemo isn't a joy ride, I was highly surprised that it was more doable than I thought it would be. With the exception of a couple days here and there, I was able to maintain most of my normal routine which was important to me in terms of providing some sense of normalcy for the kids and husband. As for getting through chemo, your oncologist and nurses are there to help manage any side effects that come along during treatment. I tend to be the more stoic type but this was one time I really took all the help I could get!



    It's completely normal to feel scared. I hope this feeling will diminish a bit as you actively receive treatment. Waiting and dealing with the unknown is tough. There is no way around it but through it. On the other side though, when treatment is complete and little by little you begin to feel like your old self, I believe you'll find that fear will not be part of you every waking moment.



    Good luck with your treatment. Remember that you have an early stage cancer and as a result, a good prognosis.

















  • geminisonia
    geminisonia Member Posts: 11
    edited April 2013

    Hello. I am new also. My identical twin sis had a single mascectomy March 20, 2013. They first diagnosed herwith invasive ductal carcinoma...no stage then. Her tumor went from the size of a quarter to a baseball(8.5cm) in6wks theyremoved6 lymph nodes from under her arm. March 29 we found out all 6 lymph nodes were positive for cancer...so the Oncologist ordered her to get a BRAC test, PET and Bone Scan. On April 11 we will get all those results and she also starts chemo that day. 6 months of chemo and 3 months of radiation. She is now diagnosed with Stage 3 Triple Negative Cancer. He told her she will lose her hair after her 2nd treatment of chemo. ) ':

    I'm so scared and don't know what to feel. I'm in denial, a stage of grief. This all seems like a nightmare and I'm ready to wake up and see Tonia smiling and healthy as ever. We are 39 years old. She also is a single mother of 2 girls, one is 20 and lives in NC and the other is almost 15 and lives at home. I will make whatever sacrifice to help my sis stay strong. I am starting counseling Monday before her chemo b/c I'm having difficulty coping with all this myself. I have to be strong to keep her strong...

  • Ericaalaine
    Ericaalaine Member Posts: 11
    edited April 2013

    Hello

    I know exactly how you feel! I was 32 with a ten month little girl diagnosed weeks before her first Christmas. Very scared as no one in my family had cancer. All my doctors said it is great thy the nodes were not cancerous! I agree that chemo totally sucks but better than I thought it would be. Losing you hair is the worst part but everyone always commented on my wigs:) I am a teacher and worked the whole time. It can be done with a positive attitude.... Don't let it bring you down! Yes it's always scary and tomorrow I have to get my yearly Check up and I still need the Xanax to sleep so I don't panic. Best of luck and let us know!

  • jo92879
    jo92879 Member Posts: 12
    edited April 2013

    I am 33 years old and was diagnosed on Feb 15th. I was 12 weeks away from graduating with my RN and had to withdraw from classes. I was devastated, still am. I had a double mastectomy on March 13th port placed on April 1st and started chemo on April 2nd (my dad's birthday). I am happily married and have three children ages 14, 7, and 6. My closest relative is my mom and dad who live six hours away. My mom was diagnosed with breast cancer at the end of June. I tested positive for the BRCA1 gene as well. My head is still spinning from all of this and I am so scared. I feel like I am in mourning at times. I just want my life back to the way it was. I have yet to lose my hair and I think that I am in denial about it. Chemo was horrible for me but I am hoping with some tweaking of the meds the next round will be better. I have had four good days in a row this week but and dreading my next round...

  • AmyLI
    AmyLI Member Posts: 1
    edited April 2013

    I remember feeling very much the same, when I was diagnosed almost NINE YEARS AGO. I was 31 years old, my children were 2 and 4 at the time, and I can really relate to your post. My cancer was triple negative and grade three, 1.3 cm with negative nodes. I had a lumpectomy followed by 8 rounds of chemo + 33 days of rads. I currently have no evidence of disease and I am busy living life and watching my kids grow up!!! I actually rarely visit this website and felt an urge to do so tonight. I am writing to send a message of hope. There is life after BC and triple negatives can survive!

  • jo92879
    jo92879 Member Posts: 12
    edited April 2013

    AmyLl: Thank you so much for sharing that with me. It's so nice to hear that I am not alone in the abundant amount of feelings I am having. I can't wait to be nine years past this too.

  • jenjenl
    jenjenl Member Posts: 948
    edited April 2013

    It's like de javu reading your post.  I was 33 when dx kids were 5 and 2, I was originally ER+ but further testing yielded TN.  I had a UMX and just finished chemo (six rounds of TAC) - I am getting stronger everyday.   I will be starting radiation the end of april.  My tumor was .7 mm, I had one positive intramammary node positive but no positive axillary nodes.  I found out I was BRCA1+ 3 days after my surgery.  I am having a hysterectomy next week.  I have done pretty good through this journey but when someone asks me "how are your kids handling this" I lose it.  I have become a complete hypochondriac though :)

    I love the posts of then and now.  I can't wait to put this nightmare behind us.

  • jo92879
    jo92879 Member Posts: 12
    edited April 2013

    I'm so happy to hear you are done with chemo! That must be such a relief. My next anxiety driven event is losing my hair. I haven't had any loss yet and am so nervous about it. I did cut a few inches off the day before my surgery and I bought some scarves. I found a couple of wigs online that I ordered too. I still don't feel prepared though. It's one more loss to go through and I've already had to withdraw from my last semester of nursing school, I've lost both breasts, and now my hair? It makes me so angry! I just want my life back to the way it was and now nothing will ever be the same. My second round is Wed and if it goes anything like the first I'm going to be out of commission for a week. How did you feel? I had a horrible headache, off feeling, nausea, fatigue, and like I wanted to crawl out of my skin. My dr said that the off feeling comes and goes throughout treatment and called it "chemo brain". Around day seven post chemo I felt like nothing had ever happened. I have 13 weeks left of this and just can't wait to be done....

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