Calling all TNs

Netter

OBXK,  Thanks for the response.  No one in my family has breast cancer and very little cancer down the line.  So all of this has been a shock for me and everyone else!  And we know nothing about TN!  I thank all of you for the info.  It is very helpful and educational.

OBXK

Netter - have you gone to the triple negative breast cancer foundation website? They have lots of good info.

Are you still in chemo? I hope you can put this all behind you soon. It's normal to feel a little adrift, when treatment is over. Seeing doctors weekly and then moving on to 3 months, leaves you feeling a little unteathered. Check in here, we'll hold your bow line. Wishing you all the best!

InspiredbyDolce

Genetic testing was $3400, and insurance paid 80%.  However, I got a call from a lady at the genetic testing place, telling me that there are 2 programs I could possibly enter (one or the other) to get the remaining paid.  She said it's because they know that even with insurance, all this takes a toll on people's financial wellness.  I knew for sure we wouldn't qualify, but it turns out, thankfully due to our AGI from the tax return, that we did qualify.  I could not believe it!  So our balance was automatically reduced to 0.  She took the AGI, and then asked for the amount of our house payment and something else, can't remember, but we were able to qualify.  They sent a paper out, that I had to sign, stating I gave her correct number, and then about 4 weeks later I got a $0 balance due bill.  I was so shocked when she said we would qualify, that I took all her information down, just to make sure I could refer to this if I ever needed!

InspiredbyDolce

Netter, cograts on finishing chemo!

Who is your insurance?  I Google'd my insurance carrier, and then found an article by them, that actually says they recommend the testing.  Also, starting this year, most insurances are now approving an add-on to the BRCA test, called BART sequential testing, where they test the DNA strand to see if the codes is out of order (that's in laymans terms, obviously!).

I had the genetic testing done at 1 year after finishing chemo.    I did it to see if I should go ahead and have the prophylactic hysterectomy.

Cocker_Spaniel

Mags my friend I thought I would have a litle break from the board as I was finding that typing and reading about cancer all day long was suffocating me a little bit and I couldn't seem to come to grips that I am still here and I have a life to lead and to feel grateful for.  But after thinking that,  I thought how on earth can I not see how things are going for our dear Kath and Karen and also LUV.  I felt like I was abandoning  them and I felt selfish.  so I guess I am still here to annoy everyone and tell you about my Chloe at times.

My girl is ok, thank God.  Amidst my prayers and bargains with God we finally got the all clear.  They will keep an eye on her but they don't think there is anything to worry about.  So I thank whoever was looking over us with deep gratitude.

So now I'm worrid about my old feller.  My daughter said he was tired today and even had a little sleep in the airport lounge when it was empty and that he seemed slower today.  So my radar blinked on and I keep looking at him to make sure he is ok.  That old feller is my life and I have to reassure myself that he is okay and not overdoing things although he says he is fine but then he usually says that so I won't worry, little does he know.  

Hope everything is going well with you and you are living life to the full.  We have to aye cause we only get one chance at it.  

Talking of periods I lost mine at 32 when I had a hysterectomy and that is one thing I won't ever regret.

Hoping all our ladies on here are ahead of their treatment and not getting too many side effects. Keep happy, keep cheerful cause it does help and laugh as much as you can. 

Love to you all with huge hugs. xxx             

PeggySull

Debra,



So glad your doc was open-minded and was willing to put you on Metforim. You are a already having good results with your troubling ongoing hunger. That''s fantastic.



I have not read anything about 1000 mg vs 1700. If I do I will let you know. I haven't had any bad side effects so far and I'm up to 1250 on a brand made by SOLCO healthcare. If you hear anything negative about that brand, please let me know.



I'd like to hear how it goes with you as you continue.



Hugs,

Peggy

mags20487

Annie...thank you for posting. Hooray for the all clear. I understand theneed for a break from time to time. This bc crap really wears us down....physically mentally emotiinally. I hope the ole feller is ok...another thing you must now worry over. You are a dear soul. I am trying to get back into life....hard whike still getting pt for the le surgery. Next surgery is on the 21st. She is going to start making the girls pretty.



Love and hugs all around

Maggie

InspiredbyDolce

Peggy, I was about to ask you about those numbers and then I realized you just added the two pills.  LOL  I thought I was really behind the target on it.  )

TifJ

Netter- I did not have a family history, but my onc. insisted I get tested because I was TN and under 50, my insurance paid 100%.

ALHusband

My wife Kathy's LAST CHEMO TREATMENT (hopefully forever!) is tomorrow! So so happy to have that necessary evil behind her. Next step is oopherectomy (because she found out last week that she's BRCA2 positive). Then either bilateral prophylactic mastectomy or rads. So, it's a mixed bag of good and not so good. Her MO says it's not a must to do mastectomy, while 2nd opinion MO says hands down that bilat mastectomy is a must given her young age (46). Both docs say oopherectomy is a given and must be done. They sure don't make this easy! Decisions, decisions. Thanks to all who chimed in with info to help her (us) make these decisions.

Mely19

Alhusband- Yeah to the last chemo. I remember how happy I was when I reached it. Just to let you know, I had the oopherectomy 6 weeks after last chemo. The gynecology oncologist suggested I would transition better to instant menopause since I was already not having my period from the chemo. I've heard from another that the sudden drop in hormone was hard to adapt to since they didnt go thru chemo but I didn't have too many serious probs other than some hot flashes which I was already getting while on chemo anyway. Still sucks to have them gone since i feel like im still too young to be in menopause but better to be safe and proactive.

Stupidboob

Hey Gang,
I hope all is well and I will try my best to get caught up soon.  When it rains it pours right.   I started the radiation and I am having some issues laying still but getting better.   I have one lady that always seems to get me on my worst days and I told her believe it or not I do behave.......:) It is just the way they have to lay me.   Just getting out is an ordeal for me but I am doing pretty good.   Sure, glad that one right over the face does not last long.    I missed last Friday because hubby and I have been sick.   Then we have had so many car issues that it is not even funny and I was really must blah.   I am starting to feel a little tired and have already had to be treated for not a burn, but a yeast infection in my arm pit.  I did not know that might happen.  

Ok, I have a question for you ladies.    Two years ago when all of this first started I was fitted (well so called fitted) for my prosthesis and I thought then (but went with what the lady said) and got a breast that is really to big.   I wore it a couple of times and then was being told that it looked to big for me (from family) and so I thought I might just buy the cutlets for the other breast to make them look even but I just think that will be to hot.    So, I wore that one a couple times (never touching my skin) and washed it still in the original box and wondering if you all knew of a place that sells the used ones?  I know I could donate it and I might but thought I would try to sell first since it is brand new.   I am getting a new one in my right size.   The lady that fitted me put me in a 9 and the new lady said WHAT that is way to big for you.......so I have been wearing one from the ACS that I picked up back then too.  It is a size 6....big difference.   The new lady is ordering this size for me since I like the one I have but she said I might really need to be in a 4.   I am going for a new fitting soon.

Cocker_Spaniel

All you ladies are!!

mags20487

back at ya baby...what a cute pup

I am getting really close to the 2 year mark.  With the great report from the doc I am feeliving quite alive again.  The only thing holding me back have been the complications of my recon road.  The perfection phase is starting soon (21st) and then another tweak in Dec with most likely one more procedure in 2014.  Everyday that passes leaves me feeling just a little bit better.  To all the ladies in tx please keep fighting and stay strong.

Maggie

Fighter_34

Read a report this morning stating that cancer researchers are now more incline to deem Stage 0 breast cancer, as non-cancer.

I feel some type of way about this! I have seen on occasions Stage 0 BC patients move on to more advanced stages of the disease.

How do you guys feel about this? I would be scared about not being treated enough, and having the fear of always having to look over my shoulders. Cancer is very complex and tricky.

http://gma.yahoo.com/5-ideas-attitudes-cancer-022144215--abc-news-topstories.html

InspiredbyDolce

Oh Fighter34, I think you are right.  There could be a few women in the minority of those numbers who might advance because they didn't receive proper initial treatment. 

In the article, they reference removing the word 'carcinoma' from ductal carcinoma in situ, so that the diagnosis isn't as frightening to patients.

I take issue with that being the catalyst behind the proposed change.  Women are probably more likely to change any part of their lifestyle to improve their survival odds with the wording the way it is.  Changing the wording might place them in a false state of security, that they don't need to do any lifestyle prevention.  I understand we don't know what causes bc (in general terms), but there is much evidence that some lifestyle changes will increase survival risk.  And these women might not look deeper into actionable items that they can do to keep this out of their future, if they aren't aware of the likelihood that this may have developed into cancer over a period of time.

aeryno

ALHusband - Congrats on the last chemo!!

I had my first round of Taxol yesterday and it wasn't so bad. I drank so much water the day before and morning of that they the IV went in easily.  Took all my pre-meds but still had a reaction - chest tightening and then my face got so red and hot and I started sweating.  They stopped the treatment and gave me Benadryl in the IV even though I had taken it in pill form prior to the treatment.  They then started the treatment again and all was well.

I continued to have facial flushing throughout the day with some hot flashes, including three overnight with night sweats but it wasn't too bad.  Happy to wake up this mornnig and not be nauseous like with the EC so that is a bonus. I still have some facial flushing but I can deal with that.  11 more treatments to go!

FernMF

Hello all: It's been awhile since I've visited here.  ALL IS WELL with me and like others, "reading about" this tends to encourage dwelling on all the negative . . so I too have taken a break.  NOW, though, I need your collective advice.  I had a pap smear last year when diagnosed with TN BC which came back "questionable"  - repeat pap smear last fall was o.k - repeat pap smear in July was back to "questionable".  I have met with the gynecologist and surgeon and am scheduled for prophylactic hysterectomy/oophretomy later in September using the robotic laporoscopy method.  (BOY, that is a lot of words!)  Who has experienced this, tell me ALL about it, the good, the bad, the ugly.

Netter

Thank all of you for the info on genetic testing.  At least I have something intelligent to talk to my onco about.  I am pretty sure that radiation is the next step and probably right away as it has been 6 weeks since my last chemo.  Hair is growing, YEA!!!!!!

InspiredbyDolce

Fern, due to your abnormal paps was it easy to get this approved? How did you go about getting your oophorectomy?  Who did you consult with, and how did you choose your doctor? Is it your obgyn who is doing the surgery?

Today, I got my papsmear results back which were normal.  However, being age 43 at diagnosis, I am planning to move forward with an oophorectomy this insurance plan year.

Fern, also Amy might post her experience here.  When I was waiting for my results (and I had a bit of spotting) she answered some of my questions in a PM, and she had the same surgery you are getting.  She was home the same day, and had a very good experience with it.  She will give you some great information I think. 

bak94

Fern I had the robotic method hysterectomy last October. I must say I have had very little pain. With that being said my issues were extreme fatigue. I just now feel like I am pulling out of it. Chemo had sent me into chemopause and I already was having hot flashes and they continued after the surgery. It was awful and I had no energy. I worked through chemo but had to quit my job after the hysterectomy because of the fatigue and hot flashes. I was a hair colorist so it was very hard to work while sweating all over everyone. Remember that everyone handles it very different. I was quite surprised about my lack of pain and the incisions where so small and really a non issue at all. Keep us posted and check out hystersisters website, all kinds of info there.

bak94

My 3 month check up tomorrow. Very nervous! New doc. It has been 2 years and 4 months since diagnoses. Fingers crossed.

Mely19

Fern- I had the laparoscopic oopherectomy , not a total hysterectomy. Not sure how much more is involved with the hysterectomy but having it laparoscopic is so much easier to recover from. They made a small cut on each side of my hip and also went through the belly button. First couple of days you have cramps and heavy bleeding like a bad period but then it improved greatly. Moving too quickly in the beginning and sitting in certain positions was also uncomfortable but I was pretty close to normal after 1.5 weeks. You do go into instant menopause and that was not fun but tolerable. Everything dries out and you get the hot flashes. I was still bald so I cooled down pretty quickly! If you have the hysterectomy, i would think it would be a longer recovery than mine.

adagio

bak 94 - I will be in your pocket for your check up tomorrow - remember to take a few deep breaths every now and then - it helps relax and keeps you focussed. Hoping all will be well. Congrats on being past 2 years - I am not even one year yet. 

soccermomof4

Hi Ladies - I just got my path report back & found out I am triple negative, I've been a little freaked out about some things I was reading. I was reading the recurrence is higher, & you don't have as many options with chemo? Don't know much, just learning about it. I am meeting with my oncologist this fri. They said something about a trial treatment , but I don't know what it is called. Does the oncologist give you choices  or just refer you to a certain one? I really don't want to make any more choices!!!

     I'm glad you are all here, it helps not to feel so alone

ALHusband

OK. My stunningly beautiful, truly amazing, incredibly awesome wife Kathleen has decided to have a bilateral mastectomy instead of radiation. This is due to us finding out last week that she is positive for the BRCA-2 mutation. She will also be having a prophylactic bilateral oophorectomy (maybe hysterectomy depending on what doctor says). Can anyone offer any advice on bilateral mastectomy? Words of wisdom? Tips? Things we should know? Also, can anyone chime in about recovery time? Also, don't know whether to go ahead and have both mastectomy AND oophorectomy at the same time. Anybody have any thoughts on that?

ALHusband

Soccermom... I am sad that you had to come here. But you picked a great place. These people here are all "warriors" in the same battle as you and are a great source of inspiration, information, and genuine caring. You are NEVER alone. It can be VERY intimidating to read about triple negative. No doubt about that. Sometimes it can appear to be a very grimm diagnosis. While I'm not trying to downplay the seriousness of TNBC at all, because it's a very worthy foe, there are positives that we tend to miss when we begin sorting through the "noise" that's out there. Those articles tend to focus on the negatives and sort of ignore the positives. Yes, there are less treatment options due to the lack of hormone receptors. BUT, triple negative tends to respond VERY WELL to chemo options that ARE available! Yes there is a higher chance of recurrence. BUT when you get to the 5 year milestone your chances of recurrence are actually lower than those with the receptor positive breast cancers. Also, if you read the following article: http://www.cancernetwork.com/conference-reports/mbcc2012/content/article/10165/2045206 you'll read that early stage, node negative, triple negative breast cancer now has about an 85% cure rate! As a man, I stand at risk of downplaying this and having you say, "Sure, that's easy to say when you don't have it." I get that. As someone who can only be a chearleader from the sidelines for not only my wife, but anyone else with this diagnosis, I simply want to say that there are strong, and abundant, arguments for hope as well!  http://www.barnesandnoble.com/w/surviving-triple-negative-breast-cancer-patricia-prijatel/1110858513?cm_mmc=googlepla-_-book_25to44-_-q000000633-_-9780195387629&cm_mmca2=pla&ean=9780195387629&isbn=9780195387629&r=1

  

soccermomof4

Alhusband - Thank you for your words of encouragement, I really need them today. All the info. just through me for a loop.

     i just got a bilaterial mastectomy 2 weeks ago, so I can help you with any questions. Monday was 2 weeks for me, I am still sore but stopped taking the pain med as it causes very bad constipation. I am getting better each day, able to take short walks, fold some wash, etc. The recovery time is 4 to 6 weeks. I am not driving yet.

       They will tell you to take stool softneres, make sure she takes them, as the pain meds really constipate. My husband even had to talk with the pharmacy & they gave me a stool softner with a laxative & that helped much better. You can get them over the counter.  It has been hard for me to sleep lying down, I had lots of pillows & propped myself up, but last night I ended up back out on the couch so I had more back support.

      Let me know what other questions you have, I'd be glad to help if I can.Blessings!!!

sweetpickle

I did a bilat bmx but in two stages. They did the cancer breast first and tested my nodes which came back clear then two weeks later took the right breast and did immeciate diep reconstruction. Recovery was much easier from the msx only but Im very happy that I did the recon. Im almost nine weeks post surgery and still taking it easy but I went straight from chemo to surgeryso it makes sense that my body would take longer to heal.

InspiredbyDolce

Hi AlHusband,

I'll put together a great checklist to help you all get ready for the BMX. That will come later.  When is her surgery scheduled for?

The biggest advice I can give you is this:  Get a hand held showerhead.  This will really help your wife be able to care for herself and do the quick hit and miss thing while recovering.

Also, get a bunch of oversized handtowels (or smaller size towels) so that at each shower she is using a brand new clean towel. This is important, to keep bacteria down.

Get some little house jackets or shirts that button in the front.

I slept on couch sitting up for a solid 60 days maybe a bit longer.  Made for a quick recovery with little swelling.  I bought a bunch of $3 bed pillows from Target, and formed a big tower of 4 pillows, and then leaned against that.  It wasn't so bad, I was able to sleep.

surgery and recovery