Calling all TNs

Tookybum

txjunebug; my stats are very much like yours Grade one stage 3 TN. I am 41.  I elected to have a lumpectomy but I did not know I was TN until after the surgery.  I am almost finished my chemo I breezed through the AC part looking back on it my the Taxol is kicking my ass.  I have gotten infections have had to take more time off.  Would I have done it differently if I knew I was TN.  Not sure.  Recovery time is front ended with the surgery.  Lumpectomy was day surgery had it on Thursday and was back to work on Monday. One thing is for sure if you have a MX you will not have to have radiation (I don't think)  I still have that to look forward to.

wrsmith2x

 txjunebug

Just like me!  I could have written your post.  Mine was 1.2 CM and deep in the breast, Stage 1, Grade 3.  I did a lumpectomy, chemo (T/C), and rads.  I was 44.  I know we are all different but I wonder if I had done A/C instead of T/C that my BC might not have come back.  Too late now.  I hope you will be cancer free soon and never have to worry about this again.  Namaste'.

ksmatthews

junebug, I did 6 rounds of TAC, then lumpectomy, had clear margins, no node involvement.  Then did 25 radiation treatments.  I am NED!  I wouldn't change my choices at all.  The chemo is doable, not fun but you can do it.  Radiation was a breaze other than fatigue.

You will love this board and you will soon see we are all sisters here!  Sorry you had to be here, but hopefully you will find love and support here.

txjunebug

Thank you all for responding so quickly to my question!  I have found so much encouragement from this board.  It is nice to hear from so many others who are in the same boat.    

browerl

txjune-I am having a bmx because the breast surgeon does not think she can get clean enough margins bc I allready have implants.  

OBXK

Surgical stuff finished! If anyone is curious about a liver biopsy, it's like being stabbed in the liver by a well spoken assailant. I'm a little achy from that and the new port. Headed home to my boys tomorrow!!!!!

TifJ

Yikes Karen!! I hope you get over the achiness soon. New ports suck! I'll bet your boys are excited!!

Titan

Hey Bug...welcome...I was on another website..and am certainly no doctor..but reading on this other website..plus on here...but with tn you want the strongest treatment possible...my tumor was 1.8 no nodes effected and I had adriamycin, cytoxan and taxol...just saying..hit it hard NOW...with the strongest treatments possible...it may be worth it in the long run...tn is nothing to mess with.....but...here is my but...that is still no guarantee...just saying

WOW..KAREN..OUCH. we feel your pain..hopefully it goes away soon..

Blah..I hate breast cancer

JAN69

Karen, did that "well spoken assailant" say, "This may pinch a bit." ?  

I had my pre-op labs done today.  I'll have a prophylactic mastectomy on Monday.  I'm feeling a little strange about this as it is a totally elective surgery.  But I'll be so glad to not have to wear that heavy prosthesis any more.  As Inmate Dawn said, I'll go flat top.  Just somewhat concerned they'll find cancer in this breast, too.

Welcome June Bug!  Tie another knot in your rope and hang on tighter.  We'll be here to help you along the way.

Wishing all a good evening and a good weekend.  Jan

 

funnygirl75

Hello Ladies, I found out in April that I was TN. Later found out that I'm also brac2 , surgery next friday bmx and removing my ovaries at the same time. I haven't been sleeping to well these past nights. I'm scared but positive that this is for the best. I still hope or wish to wake up from this bad dream.



What I'm really worried about is going threw all this and then get BC again in a few years, I need to hear from survivors with no reaccurence. Somebody give me something positive, I need to know this fight is worth it. I'm 37 and got lots to live for, my son is 17 and he still needs a mom around for a long time. Plus I'm not done nagging him yet! lol

fmaclean

Funnygirl75, I'm a 3 year TN survivor.....also have strong family history but DNA testing was negative, although geneticist said was most likely cos testing wasn't specific enough and I am most likely brca. You can do this. Three years from now you'll be having the same conversation with another newbie! (((((Hugs))))) xxx

bak94

funnygirl-there are lots of stories of survivors without recurrence, and even survivor stories of those that do have a recurrence or new primary. The fight is still worth it even if you get a recurrence, at least it is to me. Sorry to say that nobody can make any guarantees, but what choice do you have? Just give up? Those of us that have had new primaries or recurrences are not failures or negative, we are just trying to get by like everyone else. Oh wait, you didn't want to hear from me because I have had a recurrence, sorry!

funnygirl75

wow! bac94 thanks for the lovely words...... What I meant was that I just need to know that its gonna be ok. I'm very positive in life, had my chemo and made it threw that with a smile(90% of the time). It's just hard for me to think that one week from right now I won't have my breast anymore. So, im looking for some positive in this cause it's hard to swallow. Giving up has never been an option, I am a single mom and I'm fighting mostly for my son.



Failure is in the attitude not the result........ So, no, I didn't want to hear from you, not because you had a reacurrence, the fact that you had one and didn't give up makes you a perfect example that we can do anything, that I can also do anything but your delivery sucks!



thx fmaclean, I will be just fine, even if I have a reacurrence but it's nice to hear that some TN and brac can go on cancer free after all this pain and hard time.

Cocker_Spaniel

Funnygirl welcome to our site.  There are lots of ladies on here that have not had,  and have had recurrences. I can't help there because I am only just a year from diagnosis.  When I was first diagnosed I hung on to each post that had made if through because I was so scared and still am at times but nobody knows what is in store for us.  I think you are just plain scared out of your wits as we all were. Losing a breast is horrible but in time you will come to feel that, that  is only a little part of you, the rest of you is still here and you will fight for your son and for your own life. There are plenty of positives you will find them every day and yes you can do anything.  You have made it through chemo (which is more than I thought I would) and have come out the other side of that. You are young and have the whole of your life before you. This will be ok.  I always had a fear of motor neurone disease where you choke on your own saliva so when I think of that I am glad I got breast cancer instead. Does that make sense.  Once you get your surgery over with and you start to feel stronger you will see that you are ok and you have made it.  Everyone of the ladies on here have felt the same as you so stick with us and we will hold your hand through all of it.  Love and hugs to you.  Annie 

Laurazack

Hi, triple negative over 60, white and also had gastro bi-pass, hoping in all of U.S. there would be someone like me out there.  In Canada so much smaller population and less blacks, so less of this type of breast cancer.

My treatment is FEC-D.  I did not notice anyone of you mentioning the Fluorouracil, Epirubicin Cyclophosphamide and Docetaxe;(taxotere)

I am at Princess Margret in Toronto, our leading centre, but wondered if U.S. was doing something different.

christina1961

Hi Laura and welcome to the group!

My oncologist told me they use epirubicin instead of adriamycin in Europe.  It is the "sister" drug to adriamycin and there were some reports that it is easier on the heart than adriamycin.  I had both because of a adriamycin shortage in US at the time of my chemo treatments so I had first two cycles with E.  It caused less nausea for me and while I'll never know for sure, it seemed to shrink the tumor more because once I switched over to the A, my tumor quit shrinking as much. I believe the fluorouracil may be used along with ACT at MD Anderson, one of the leading US centers. I also had taxotere, cyclophosphamide.

Luah

Laura and Funnygirl: Welcome. You ladies may also want to check out the Calling all Canadians thread under Supprt and Community Connections on these boards. Quite a lively group there too.

Funny: I'm 3 years out and doing fine. There are many, many of us out here, it's just that after treatment, many ladies move on from the boards so you don't hear as much from them. 

Laura: FEC and AC are equivalent, although as Christina said, E is known to be a little gentler on the heart.  Generally Europe and Canada follow FED-D and US does AC-T. FEC is usually given on a triweekly basis, while AC is usually biweekly. Taxotere (D) is a taxane drug just like taxol (T). Some women find one or the other harder to take. Taxol can be done on a weekly basis. There have been some reports of permanent hair loss from taxotere but it is quite rare.  There have been some reports that giving the taxane first is more effective for TNs - you may want to ask your onc about that.  Wishing you all the best for your treatment and few SEs!

OBXK

Welcome to the newbies!!!



Jan - I hope your surgery goes well. I love being a flat top! It's fun to wear sheer tops, and watch people try to find your boobs!



I am home in my own bed!

Tookybum

Laurazack; Although a little younger I am almost like you I had my by-pass surgery date for August 31 unfortunately I found my lump in May so I guess I am off that list at least for the mext five years.  I have the AC/T dose dense but I suspect they are going that direction to hit it hard.  Depending on when you had you by-pass they might be looking at options easier on you system as it has been through a lot already.

Lovelyface

Luah - Congratulations on your 3 year milestone.

Dawn - Can't wait to hear about your recent trip.

txjunebug - I am so sorry that you have to join us here.  I can imagine how angry you must be when you just got your yearly mammo 2 months ago and everything was fine and now this.  I also had a mammo 6 months prior and all was clear.  6 Months later a BC TN diagnosis, unbelievable.  Please don't panic at all - your tumor size, and the fact that nodes are clear - everything sounds very very good.  Actually, you have a good chance that you will be cured 100%.  I am 2 years out myself.  My tumor size was much larger than yours, although I also did not have any node involvement.

So, relax, consider having a lumpectomy, but have a tumor board at your hospital decide yoiur case and then go from there.  Ask your doctor to present your case to the tumor board, for treatment suggestions.  If you have family history of both breast and ovarian cancer, your insurance would approve you to get genetic testing.

I know that our Luah here on this board says this the best but I am gonna try and say it - NO, TN status is not the reason for a double MX.  I have had a lumpectomy myself. TN can have the potential to come back on any other parts of your body, not always necessarily the breast, so why have your breasts removed?  It could come back in the breast again, but that wouldn't be so bad of a diagnosis.  It could be a new primary or a recurrence.  It sounds like you have caught this at a very early stage - Congratulations!

I myself had no node involvement but still was recommended to have chemo. I am not sure what the standard of care is today, regarding chemo.  But it used to be that Chemo was the best thing for TN's.  So, girl, you are at a very good point, count your blessings that you are at a very early stage.  I am wondering why you did not have a full body scan, instead are having individual organs tested.  Good Luck and have a great weekend. You have nothing to worry about.  Those reports tell much more than what we need to know.

txjunebug

Lovelyface -  Yearly mammo is how we caught this. That was 2 months ago but feels a lot longer!!   Tech got me all the way to the chestwall in the picture or I don't think I would even know I have BC.  Went  back to hospital and gave her a hug for saving my life.  We both cried. 

 I had a full body bone scan, CT scan, sonogram of kidneys, pancreas, liver, gall bladder, stomach,etc.   Next Thursday a MRI of liver as they couldn't tell exactly on the sonogram what the CT scan saw.  Surgeon thinks it's just how mine formed but wants MRI for clarification.  Wondering if I should have PET scan, too.  Feeling a little like a science experiment right now with all of the testing 

Everyone - thank you for the replys and welcomes!!!    It helps to hear from others who are in the same boat. 

Monday I have my 2nd surgery.  Only got .66 mm clear margin on the inferior edge.  Surgeon said with my age that her and Rad Onc (which I haven't met) think that a wider clear margin would be better.   Right now it looks like we were able to get it all.   I feel lucky, scared and nervous. 

Did anyone have issues with your employer about treatments and missing work?  So far, I haven't run into problem but expect that sometime in the future my boss may have difficulty with it all.  FMLA is only 12 weeks and I'm using 3 of that for the surgeries. 

borntosurvive

Just catching up after being away from my computer for a bit.  I went back to work on October 1st and although I am there every day (part time hours) I find myself SO mentally exhausted that I have been falling asleep when I tuck my son in at night. 

Welcome to all the new ladies.  Sorry you're here but yes, you will find all the love and support you need.  We're all in this together.  All the best to those of you waiting test results, surgery etc.  The waiting game is the WORST part. 

txjunebug: I had a double MX (my choice) even though my surgeon said he'd "get it all with a lumpectomy".  I knew for myself that I could not live with the fear of keeping my breasts.  I just knew that I would not be able to sleep and I'd worry with every little twinge.  So that was my choice and I don't regret it for a second.  I had no node involvement and still had dose dense AC-T chemo.  I did not have rads (radiologist said I didn't need to).  I finished chemo April 5/12.  Trust your instincts and yes you're stats look good.  It appears you caught it early and that's key. 

A little update on me:

I had a complete pelvic ultrasound (routine for me) as I have a dermoid cyst that they've been watching for 4 years now.  No change again this year and no issues found with any of my "girly" parts.  I also had a bone desity test and it was found that my density is a tad low (probably from chemo) but my lower back density has actually increased.  So good news from those tests.  Had my yearly physical and all came back fine.  So now just to have my mammo (not sure how that'll work after a BMX) on November 5th and my followup with my cancer team late November.  I am coming up on my year and it's scary.  October 15th was the day my family doctor called me at work to tell me that my lump "was not nothing" after she got my ultrasound results.  I can remember feeling SO scared and sad a year ago today.  The fear is still there but it's different now. 

Hang in there Sisters.  We're doing it together xoxoxoxo

Cocker_Spaniel

Good morning ladies.  Had my usual Saturday lie in and it was delicious. The old feller was at the cafe so I made the most of it.

Karen - you do make me laugh with your flat top. Can just imagine people trying to  find your boobs. What is the next step for you now.

I'm sure I have told you that my youngest daughter Mandy and myself belong to the Cake Club. Last year the day after I was told of my cancer we flew to the South Island for our yearly cake conference.  It was a really good distraction for me at the time as I didn't have so much time to think.  We are going again next weekend and we are driving to the bottom of the North Island,  and I am going to put off having my mammo, scan and port removal until I come back because I just don't want any results to spoil the time we are there. It should be a lot of fun and there are heaps of beautiful cakes and sugar flowers that the ladies have made to drool over. We have competitions and the cake shops all over NZ bring their shops with them so we can buy all the latest ribbons, colors, moulds and heaps of other things. So it will be a really good four day long weekend to look forward to.   

Titan - just thought I would let you know that we have a long weekend this weekend so have Monday off as a public holiday.  Yay.  

Do you put your clocks forward or back depending on winter or summer in the US?. A lot of the farmers here don't like that because it upsets their cows but I love it when the clocks go forward cause it means summer is on its way even it we do lose an hours sleep.

Born - very shortly coming up a year also for me from diagnosis.  What a year we have been through. I wonder how they are going to do your mammo with you having a BMX they will have nothing to (pinch).  That I think is the only thing I regret. I wish I had, had a BMX not only because of the fear of having it in that breast also but because I hate wearing the prosthesis but at the time I didn't even think of it I was so shell shocked.    

Well ladies I am off to do some Christmas shopping.  I know, I know, its early but I like to do mine early so I can buy more for my grandkids.    

Thinking of everyone who is having treatment, getting over treatment, or is just having a sad or bad day.  Huge warm hugs to you all. Annie     

OBXK

Annie - so glad you were able to have a lazy morning. Your cake adventure sounds amazing. I miss doing things with my mom, I'm glad you and Mandy can make some more memories.

Yes, we fall back an hour. I dislike it, because it gets dark so early.

I see my onco Wed. I guess we'll schedule my chemo. I'm having gemzar/carboplatin. I think it said my hair will thin. I'll go get it cut short, to be on the safe side.



The stress and pain pills were causing me strong cigarette cravings, so I bought an electronic one. Have you ever tried one?



Love to all...

LuvRVing

Hi everyone, I've been gone for a while.  We left for our trip to CA and Hawaii on 10/7.  We were supposed to be gone until the 20th, but my mom had an aneurysm on Wednesday morning so we had to fly home immediately.  She is, unfortunately, not going to make it and we moved her to hospice today.  It's sad, but she also has Alzheimer's and well, this is going to be an easier final journey for her than the lengthy decline of dementia.  At least she has been able to maintain her dignity to the end.  She looks very peaceful, like she's sleeping calmly.  It's the best I could hope for under the circumstances.

I've tried to read as much as I can to get caught up with all of you, including the newcomers.  Wishing everyone a beautiful weekend.

NavyMom

Oh Luv.  I am so sorry.  Please know that I care about what is happening in your life right now.  Wishing your mother a peaceful journey.  And even though I don't "know" you, I do know that you have been a wonderful daughter.  And Your Mom would be so proud of you, simply for the kind of person you are.  Prayers to you and your family.  I hope you can feel the warm hug  I am sending as you sit by your mother.  May sweet memories  bring you peace.

PinkyWI

Luv, I am so sorry to hear aboutyur mom.  I hope that she remains comfortable and pain free.  Hugs to you...

Sugar77

LuvRVing - so sorry to hear about your mother's aneurysm. Hope you're holding up well under the circumstances.

Cocker_Spaniel

Well we came home with heaps of pressies for the kids including a trampoline for my little Caitlin and Ben but they had to deliver that cause the boxes for it were so big and heavy.

Kare -have you ever smoked? Let me know how those cigarette thingy goes and I will try it because for the life of me I just cannot give it up and working from home I smoke more. I know I shouldn't especially now but its so flaming hard. I do hope your chemo goes well and you don't  lose that lovely hair of yours.  Mine is only just growing back and is very very short with no sign of my own red hair. 

Luv - I am so sorry to hear about your poorly mum.  Hopefully she will pass peacefully and in no pain.  It's a shame your holiday was cut short but you would have wanted to be there with her I'm sure.   

I'm getting pretty worried about Kathy and her mum.  Kath hasn't been on here for ages and I knew she was worried about losing weight even though she was eating all those Dove bars.

Oh well the day goes on so better go and get something done.  Catch you later ladies. Annie

JAN69

Luv - I'm so sorry you have to face losing your mom while fighting your recurrance.  I'm sending warm hugs as you help your mom in her final journey.  Jan