Calling all TNs

greenae

Hi All, Shari, I am so glad you are ready to fight. I feel as if I had some fight knocked out of me tonight. My surgeon called at 630p to tell me she no longer thinks LX will work for me, after 6 weeks and 3 docs telling me it will be LX, chemo, rads. Now I have to see a plastic surgeon to discuss options. Still no surgery date. My MRI Core, 3 days ago shows a 7mm mass and 4cm linear extension. IDC in the mass and DCIS with lobular components, high grade, at the posterior end of the 4cm. It's at 9-10:00, so a lumpectomy will make me look very distorted, and I need a reduction of my right breast (DDDD). Everything has become more complicate, and I feel the wind knocked out of me. I have early hypertension, am 57, and smoke. What a jerk I am. Have been up most of the nite smoking my last cigs and drinking Coke. I need to draw some strength. I am a control freak, and am losing it. Just writing this and admitting the. Stupid cigs is helping. Now I have so much more to learn and don't know where to begin (of course the butts gotta go). Thanks for listening. Wish it had been MX from the start. Want this war to get going. Breast Cancer Sux.

Shari, I admire you, and need to swipe some Attitude.

Arlene

greenae

just read my own post and feel like telling myself to quit whining and get on with it!

Luvmydobies

Arlene you're entitled to whine! Don't beat yourself up over this. I still do from time to time. I always think what did I do to cause cancer but the truth is it is nothing we do to cause it! I was in good health, ate right, exercised, healthy weight, etc., yet I still got BC. I need to stop doing that but still do it . I have a bad headache this morning and the bad thoughts are creeping up. Ugh!

Lookingforward66

I second the fact that we didn't do anything to cause our cancer. My BS told me it makes no sense. I was healthy, ate right, exercised, drank only now & then & not overweight. Blood pressure, blood work was all good so as stated why? Just is.....so we deal. Keep fighting. Learn from all info you get & be your own cheerleader. Positive attitude helps. Don't let the "drunken monkeys" take over your thoughts. We all cheering for each other, and prayers daily for our "Sisters".

Best to all this day.

Marsha

anotherNYCGirl

Arlene, - I know it stinks, but hang in there! The idea of mx and reconstruction and then treatment is so overwhelming in the beginning, and I, too,felt that the wind was taken out of my sails. (My kids are now always sending me pictures of beautiful sailboats!) It CAN be done though, - and sounds like you have a strong support system. There are amazing plastic surgeons out there. Find one that has a specialty in breast reconstruction, If you were near here, I would suggest 2 in western nassau county, but I am sure there are great drs closer to you.

We have all been in your shoes and understand completely how you feel.

Sending hugs from across nyc!

eileenpg

greenae= I too am in excellent health. Have exercised 5 days a week for 30 years.Never overweight. Never smoked. I did drink 2 glass of red wine for years.  However,which is a contribuating factor for positive ER PR breast cancer. Which we do not have. Have not eaten red meat for 28 years. No processed foods. I could go on and on about what I did to keep healthy.  Cancer does not care. It does not discriminate. Anybody can get for no rhyme or reason. So, stop thinking about what caused it. Spend you energy on fighting it. Look forward not backwards. I wish you only the best. This is a club we are now members of that nobody wanted to join!!!!

greenae

Thank you, my friends. I don't think anything I have done has caused this BC. Have been a "closet" smoker, and know it's not that. But I am reading smoking causes all kinds of problems with reconstruction, and my mindset these past 6 weeks is making me want to smoke. I have not looked into MX at all, as it was never discussed with any of the docs...Anyone have strong feelings re: expanders, implants, DIEP, etc? I won't be able to get any plastic surgeon on phone this long weekend...guess I have some reading to do. Thank you for your support and encouragement.

Happy Valentine's Day

arlene

Cocker_Spaniel

Shari I am glad to hear you are gathering your army to fight this damn cancer and know that we will always be in your pocket.  I can understand how you feel about body image.  Mine never was perfect but I was happy with it and it was me.  Now of course there is some missing and in a way I am grateful for that, if you can understand that. I wanted the cancer well and truly out but because it was microcalcifications and widespread I wasn't offered a lumpectomy or reconstruction.  I'm glad you are content with your decision and hopefully your reconstruction will take and there doesn't seem any reason why it won't,  but a beautiful tattoo will look good as well.    There are heaps of chemo out there and I'm sure there is one for you.  I am so glad you are at peace with your decision. You are facing all of our fears but keep going girl it will all turn out fine. This army is ready to march and do battle with you, and I know  you will get through this.

anotherNYCGirl

Arlene, - my breast surgeon helped me line up appointments with 2 plastic surgeons that she works with and thinks highly of. Each specialized in a different type of reconstruction. I was able to see them quickly, and gather info to decide which to go with. Breast surgeon and ps then arranged the surgery date with each other.

Perhaps your dr can direct you, as mine did.

Cocker_Spaniel

Arlene I too am a smoker.  I have been ever since I was 17 and my mum was dying with ovarian cancer.  I didn't smoke then but it was the doctor who said give that child a cigarette as I was distressed and have smoked ever since. Everybody did it way back then of course.  I was a happy smoker for years in as much as I enjoyed a smoke occasionally but when I was diagnosed there was no chance of me giving it up as I was too nervous and worried and I smoked more at that awful time .  I have never drunk alcohol and for some people that is a stress release too, a relaxant.  None of this causes cancer  but I think if it helps you to get through,  then do it.  There are always people who will feel they have the right to tell you what to do, whether you know them or not, but they have no control over your life only you can do that.  Do what you need to get through the hard times such as what you are going through now.  I feel you have the strength to get through this battle just like Shari and once your plan is in place you will feel better.  We are with you all the way.  Sending big hugs.

slv58

Arlene, you are doing great, you have a lot of information changes that your trying to deal with. None of this is easy and we all have down days. This is natural so come here often and open up to these great women, we all understand these things the way only another TNer can!

I had my breast MRI today and will have my left mammo on tues. March 9 is my information class, then formal apt. with my BS and PS. Hopefully surgery won't be far off. I want this done- I'm afraid it's spreading daily! I'm afraid to do yoga for fear the increased blood circulation will stimulate growth- am I crazy ?

I have talked about this before, but thought those newbies struggling with dark thoughts may benefit. My husbands aunt had bc about 20 years ago and when she found out about mine she gave me a great piece of advice. Start a grateful journal. Everyday write one thing that brings you joy, makes you smile or gives you peace. It doesn't have to be a long drawn out short story- maybe just one word. Or a picture. But do it every day. I did this with my first journey. I was afraid depressed and in shock but I figured that it would be worth a try- my aunt seems very happy now! Well at first it was hard, but as I became aware of my mission to find something to write about, I started looking at the world a different way. I was for the first time living for today. As soon as the pressure of living for all the things I want to do tomorrow was gone- I became much happier. I no longer worried about if I would be around in a year to do this or that but can I top the singing birds this morning? Maybe the smile of a child or the beautiful sunset? Anyway, I urge anyone willing to give it a try and see if this helps bring you up!

There is a good app called Maxjournal that allows you to post pics in your journal. I did this when my hair started growing in!

Arlene there is so much information to digest with MX.. I know it's hard, but maybe go through some threads and see if you get a feeling from one over another. I guess I'm lucky in a way because I can only have diep due to the amount of RX I had.

Keep smiling

Shari

greenae

Thank you, All! Trying to keep my chin up. Figured I would just freak out a bit this weekend, til I can get the PS appt, hopefully they're in on Monday. My surgeon is having me call another NyU doc. Read about him, seems like a good one. So, I will try to see him ASAp, and get this show rolling. Shari, I think the same! I don't ride my bike as hard because I envision cells escaping and invadind the rest of my body! Crazy, I know!

I will have to see what the PS recommends, and take it from there. Not looking forward to these multiple surgeries, chemo, and not knowing if I need rads. But it is what it is. I understand implants are "easier,?" Is that true? That was the first thing my breast surgeon mentioned. Expanders and implants. Hmmm. Maybe I can have some nice "Cs" when this is done? Oh boy.

I do keep a journal, and Shari, going to try your advice. It's just I haven't been too happy with these changes and the waiting. But I will try to look for the good in every day.

Slapped on a nicotine patch today. It's helping.

Thank you all so much!

Arlene

PeggySull

To all who are facing a mastectomy. After the initial shock and grief comes a period of calm acceptance. To mitigate the loss I promised myself I would have better looking breasts after than before. Got a great surgeon and plastic surgeon. 6 months out from surgery I went to Vinnie for nipple tattoos. My breasts now do look better than before! Scarring is almost invisible two years out and you can only see them if you get below my breasts. The loss of sensation is a kicker for sure.

If you have time to do some gentle yoga targeting range of motion before the surgery, it will pay off in recovery.

Hugs to all,

Peggy

slv58

Peggy thank you! What type of ROM, I'm assuming shoulder? I see you had nipple reconstruction, are you happy with it? I have to ask my surgeon but maybe someone can tell me, why is it that sometimes some women can't keep their nipples? I'm going to miss mine :-(

I'm finding it difficult to accept the thought of loosing a body part. I'm happy I have some time to get use to it and appreciate knowing that I'm probably in the shock/grief stage. I look forward to the calm acceptance. I have to stop being so emotional about this- put on my big girl pants and fight! I guess today is just a blip in my normal spirit. Tomorrow will be better

MomMom

I've been on a road trip for almost two weeks with my hubby to celebrate one year since my diagnosis and have been playing catch up on this thread, but there is SO much I want to say.

Shari, You are in my thoughts and prayers.  I can tell from your postings that you are strong, spiritual, and you have the positive attitude that will serve you well.  There are other chemos out there that have been proven effective for TNs - carboplatin for one, is being used very successfully on many TNs.  Stay strong and know that everyone here is in your corner and willing you with all we have to get through this and be victorious on the other side.  Having a recurrence is a bummer, no sugar coating that.  However, it has not spread!!!  What a huge blessing that it is.  You will do well.  I just know it.

Greenae, Ditto for you sister!  You. Will. Do. Well.  I can tell that you are a spitfire too and have a great deal of resilience.  Yes, it's a curveball to have to adjust now to the idea of a MX when all along you were certain it would be the LX, but it is all doable.  One step at a time.  Don't beat yourself up about causing your cancer.  I had the world's healthiest lifestyle and I got it anyway at the ripe old age of nearly 67.  I'm here to tell you that even at my advanced age, I did well on chemo, rads, the whole ball of wax.  I realize that others had more troublesome side effects, but many, like myself, were able to tolerate well and exercise daily during the whole mess. 

I don't know how many of you follow the Triple Negative Breast Cancer Foundation website - www.tnbcfoundation.org - but there is a new thread now on a promising new clinical trial at the Mayo Clinic in Jacksonville, FL, for a vaccine to prevent the recurrence of triple neg bc!!!!  http://www.usatoday.com/story/news/nation/2015/02/03/mayo-clinic-triple-negative-breast-cancer-drug-trial/22785941/

My daughter also saw a short piece on the Today show while we were away on this trial.  I think there have been other articles as well. The article implies that the trial may start soon, as in this year, but there was some scuttlebutt on the TN website that it may not start until 2016.  I've just sent an email to my MO to ask if she knows anything more about it. 

Paula

slv58

Thank you so much Paula! It seems most trails are not offered in Canada and every time I ask my MO she says there is nothing that I would benefit from. She is not even encouraged by the metformin results. She did mention that she will discuss with the others the possibility of one of the platinum chemos. I'm not getting my hopes up but will try and stay positive that my MX will get rid of everything this time but it's hard knowing that even with the high dose chemo and radiation- some micro cell survived and was able to proliferate. I hate this! Sorry I guess I'm having a down day.

MomMom

Dear Shari, You have a right to have a down day. But I can tell that you have already evolved from initial shock, and you have gone into fighter mode.  

I hope everyone here will join me in following this promising new trial (whenever it starts) and perhaps talk to our MOs about it.  Knowledge is always power.  Wouldn't it be wonderful if a vaccine against recurrence is within the realm of possibility!!  May we all live in nothing but an attitude of hope.

 

greenae

Peggy and Paula

Thank you so much for the info, support and advice. Shari, it sounds like you are having today, what I had friday nite and all day yesterday. Funny, I just told my mom and other sisters, and I feel Much Calmer. I think I am so worried about telling friends and families, will be more upset by their reactions...that I make myself crazy til I tell them. I think I have to accept the changes first, then I am able to talk about it with others. Thank God for the 2 close friends that got me thru fri nite. DH doesn't know what to say or do, but he is improving...lol.

So, let's rent a Winnebago and pick everyone up, and Road trip to Jacksonville...I want in on that trial!

In the meantime, I know I will be having ups and downs in the months to come...and reading all of your posts HELPS me so much!

Thank you,

arlene

And the nipple business seems to do with how close the Ca is to your areola. Mine is 5cm away and my BS already warned me that she doesn't think I will keep it. My theory is that evolution should make these damn breasts fall off after breast-feeding. Who needs 'em? They are trying to kill me...and I won't have that!

speechmom22

shari.....I love that suggestion about the gratitude journal. I really want to do that! You are in my thoughts and prayers as you continue this battle.

arlene....hang in there. I know waiting for some action was the hardest part for me. I felt a sense of relief once a plan was established and I had dates in my calendar.

I am looking forward to my appointment next week with my MO to discuss the clinical trial that has been in the news.

Had a minor setback on Sat night when I spiked a fever and ended up in the ER. Thought I was cruising along relatively well since my first CT treatment and then 11 days later, BAM! Fever, chills, headache. Blood work showed low neutrophils so I got the neutropen shot and an antibiotic. Now I will need the neulasta shot after my second CT next week. Not looking forward to those side effects.

Meadow

feel better speechmom

greenae

Thanks, speechmom I hope you feel better real soon. I crave relief from this anxiety. Yesterday I felt ok about the changes, but today I am pretty upset, again.

arlene

slv58

Speechmom, I hope your feeling better. I tried taking Claritin for the neulasta SE but it didn't work for me-but does for a lot of women. Worth a try! Don't forget to drink lots of water and rest!

eileenpg

speechmom. I took claritin  and an aleve the day of chemo and for the next 4 days. Nuelasta shot the day after chemo. I had no bone pain. The first round of chemo I did not know to do that and I thought I would die from the bone pain.

Ask about the Aleve. They were not crazy that I was taking that. Said I could mask a fever if I had one. I told them I did not care. It made me feel better. Then I said" I am a hospice nurse I am hospicing myself". They left me alone after that.

Good luck!!!

Greenae= Hope you can relax. It is so hard to do. I made sure I worked out everyday to get rid of some of the stress.

Curlyq1974

Wow!  Just read all the posts from January thru today... so much is going on!  I have been trying to get on with life and back to normal - whatever that means.  Lost my right tissue expander to an infection in October - still haven't called the PS to discuss what we are going to do.  If I had my way, I would never call a surgeon or doctor again for the rest of my life!!! Anyways, I  probably look silly walking around with one boob, but I am just so thankful to be walking around and getting back to life.  I started running a little again and it is AWESOME!!! 

Greenae and Slv58, UGH!!!  I think that sums it up... ugh!  I'll be praying for you both and sending loving, warm thoughts.  When things get overwhelming, just remember to breathe... 

Greenae, as for going from 1 cm to 6 cm... I have a loooong story.  I found a lump that was pretty big.  We did a excisional biopsy to remove it... it was benign.  3 months later, at a follow up, I told my surgeon I had another lump.  She said it wasn't possible, and then she felt it.  Yep.. it was possible.  In 3 months!!!  Went from nothing to 7cm!!!  TN is a bitch... Sneaky and agressive.  But, I am tougher and meaner!!!  So are you - you will get thru it.  Just breathe...

Ladies, I think of you all often and I really wish this was an exclusive club that wasn't taking any more members...  Hugs and prayers for all!!

 

anotherNYCGirl

Speechmom, - i hope you are feeling better! hate those set backs! i had a few, too, and it stinks, but we get through them! I had neulasta with chemo and the claritan did the trick. I took the day of, and about 10 days after.

Shari and Arlene, - I hope that this is a GOOD day, and that you will soon be less stressed!!

Hugs to all from freezing, snowy NY!

greenae

Thank you, all

Got an appt with PS for tomorrow. Hope he thinks he can put me back together at some point. I fluctuate between wanting things to start happening and wanting to just run away. ugh. Thank you for your thoughts and prayers. Gonna go ride my exercise bike and get some endorphins going!

arlene

simplelife4real

greenae, this is really the toughest time. Once you get your answers, get your treatment plan in place and actually start treatment, your anxiety will decrease. It won't go away completely, but it will get better.

Speaking of anxiety, here is an excellent article for all of us with TNBC and anxiety.

Study Showes Extra Emotional Effects of Being Diagnosed with TNBC

greenae

Thank you, simplelife...I am banking on that. Can't take much more waiting, and the LX to MX really threw me. I am trying to be strong, but keep falling apart.

Msmath

hello all I just returned from my BS. He went over my pathology report and said that it shows I am triple negative. My original biopsy showed ER+ but less then 2%. Now I'm looking for information before heading to see my MO on Monday. I have an appointment tomorrow with my PS my goal is to get her to fill my TE's. I just want some good news. On a side note my daughter (16) is having a fibroid adenoma taken out off her right breast sat tomorrow and I want to focus on her.

Meadow

Msmath, welcome to the forum, and I know you will find tons of info here and on other threads on BCO. I know you are concerned for your daughter, so sorry you are going through this. Hopefully you are healing well after your surgery. Are you having chemo or any other treatments?