Calling all TNs

jenjenl

Mumtobe - CONGRATS!!! 

JodiRocksthePink

InspiredbyDolce- I looked on John Hopkins site to post a question....could you point me in the correct direction? Thank You! Jodi

slv58

Hi everyone, newly diagnosed TN. I'm still trying to wrap my brain around all this. My surgeon decided that I would do chemo first and had my first one 2 weeks ago. Tolerated it very well, with minimal side effects. I'm trying to decide which surgery to have after chemo. For some reason my surgeon seems to feel I would have as good an outcome with a lumpectomy as mastectomy-her explanation was that she would have a cleaner access because of location (10:30). I'm really scared about making this decision and wonder if maybe I am holding onto an older mindset in thinking I should have a mastectomy. The other thing I have been thinking about -if I get a double mastectomy, and there are some cancer cells left, would they go to harder to detect areas such as ovaries or uterus? In other words, is there any merit to leaving a "bait breast"? Sorry if this is way off in thinking, I have a friend who's doctor had mentioned that she tries to dissuade her patients from double mastectomies based on where recurrence would occur. There seems to be such a high trend for mastectomy vs. lumpectomy and radiation (is this based on research?) so I'm having a hard time why I'm being told there is only at most a 2% difference in survival rates. I just want to make the right decision and unfortunately I don't feel "right" about either-my biggest fear is that I will regret one over the other and don't want to decide based on fear.

SherylB

slv58,

You don't have the info on your signature regarding any node involvement or clear margins, so I am assuming that there has not been any surgery yet. Is that correct? You need that information to determine which surgical route to take IMHO.

In my case the nodes were negative 0/3 and they were able to get good clean margins, so it is assumed (guessed) that all the tumor was removed by my lumpectomy. Since I have no family history the docs felt that aggressive chemo followed by radiation would give me as good a chance an as mastectomy with a whole lot less surgery. IMHO you need more information regarding pathology, aggressiveness, nodes, margins etc before you can make a well informed opinion.

Take care and hang tough, you can do this, it is the unknown that is so hard for all of us. Be sure you trust your doctors too or you will continue to wonder if you are making the correct decision for yourself.

Sheryl

Hopex3

Hi Slv...I just had a BMX two almost two weeks,ago. I chose that as I'm BRCA positive and both my mom and sisters both had BC. I had chemo before surgery. I had great results with the chemo. They couldn't find any residue of the tumor in my breast tissue nor were my three nodes positive. I feel for me, I made the right decision. It's a decision you really need to think about and talk with your doctors.



Best of luck to you. It's a long road, most of it not fun but you can do it! All these ladies on this website are wonderful. I've been to other sites and they scared me so I just go here. TN is a hot topic right now and researchers are really finding out what works and what doesn't in getting rid of it. I know personally many ladies with TN that are at least 7'years out from diagnosis and are doing fine!

Babs37

slv58- Did you get tested for yhe BRCA-1 and 2 gene?  In my case, the test came back negative so my onc didn't feel I should get a double mastectomy based on that fact. Did you know that breast cancer doesn't metastasise to the other breast? If one day you should get cancer in the other breast it would be considered a new primary. Breast cancer is knowned to metastasise to other organs like liver, lungs, brain and nodes... but not the other breast. So keeping your other breast would not change anything or make you more succeptible to have another breast cancer or being your "bait breast" unless you had the gene mutation (BRCA). Then, your doctors would probably mention double mx and having your ovaries removed too. But I do know and understand what you are going through trying to figure out witch surgery to have. I think it was the hardest decision I had to make in all of this crazy adventure! Do what feels right for you... Good luck. Hugs.

Titan

Sheryl..and all..the thing i like about this thread is how we are so very honest with each other...we know too much to tell each other that everything is going to be fine...we all know that treatment sucks and cancer sucks but we just hang out together to get each other through the bad times. and hey I was a cheerleader in 7th grade but I sucked at it...never could do a freaking split....my mom was a cheerleader and my daughter and 2 nieces..must run in the family!

slyv...big decision for you re mx vs lx...an lx was an easy decision for me..the tumor was so very close to the surface of my breast...I could see it...recovery time was quick....and I wonder about the cancer "having no place else to go" also....not sure if there any studies on this at all but I know I have read about a few women on here saying the same thing..

Bottom line..if your breast surgeon thinks an lx works for you maybe you should trust him/her...or check with another breast surgeon...I listened to mine and chose the lx...but you do need to do what you are comfortable with and can live with.

slv58

Thank you for supportive kind replies! When I had my core biopsy done, there was one node that looked cloudy-they took a sample of that and luckily it came back negative. My surgeon will do sentinel node biopsy with whatever surgey I decide. She feels that my nodes are clear, but of course will not know for sure. I am stage 2 based on size grade 3. I appreciate the support, and have been somewhat apprehensive about researching too much-as I have found a lot of depressing facts. For me, there is some comfort in a bit of ignorance. I refuse to be defined by %, and yet I need to know some statistics to make the right decision for me. I am awaiting geneticsc to contact me regarding testing as I am adopted and have no medical inheritance knowledge. Babs37, thank you for the correct information. I did not know that about bc metastisise. CherylB, it's great to hear of someone else having just a lumpectomy and doing well. Again thank you everyone, I will talk with my surgeon again, although she really feels a lumpectomy/radiation is what she recommends. Wed. Is my second chemo, I had a friend shave my hair, but it is still holding on. Someone told me I should have waited in case I am one who wouldn't loose their hair- I had to laugh at the insensitive timing of that comment! You really do find out who your friends are. On a side note that I don't see written in these forums, does anyone else have an awakening appreciation for life? It just seems going through this, that I am laughing, smiling,seeing things in a more appreciative way. my glass is always half full, but now I look at how beautiful the liquid is!

mags20487

slv58--please also check out www.tnbcfoundation.org as there is some fabulous and recent links to help you make that decision about mx vs lx.  It must ultimately be YOUR decision whatever makes YOU comfortable.  You have some time to really search the options so take your time and in the meantime...welcome

Saw my Mo today.  I have had some issues with the side and base of my neck.  The last two weeks felt some pain when moving the head in some directions.  Yesterday it felt like there was something pushing on my throat just ever so slightly.  She said that there were no palpable masses which was good but sent me for an US and Ct which I had done today and hope to get the results soon.  My follow up is next week...ugh...hate the wait.  She said it could be a blood clot or cancer in the lymphs or option 3 could be nothing at all....let's choose that option shall we???

Maggie

Hopex3

Mags, I'm hoping for option 3 as well. I hope you don't have to wait too long.

Let us kow...take care

Cocker_Spaniel

Hi Ladies

Adagio - My neuropathy is almost gone now.  Just a little bit of  numbness in my little fingers.  I had no other problems when I had my next Taxol and side effects were much better than AC.  I'm glad I had more but still only managed 7/12 which upset me a bit as I wasn't sure what would be a good number to have. Still too late now.  I would say keep at it if you can and try to throw as much chemo at the cancer as you can.  I know its hard but you can do this.

Hope - yep you are right we laughed all the way through the port removal.  There really was nothing to it and the surgeon and staff were wonderful.  I always have to make a mountain out of a mole hill. Is that the right way around.

Russell - the 2nd chemo just like you was the worse one for me but you can do this.  Just hang in there girl you will make it. I nearly gave up so many times but the girls on here held my hand and I made it. Today I am so glad I did.

Titan - you get just as many stat holidays as us maybe even more so my time will come when I envy you again.  I would just love to see those pics of you as a cheer leader, bet you won't show us them!!  You promised you would find me your daughters wedding pics cause I couldn't find them but you never did.  I've been waiting and waiting. By the way I could always do the splits, got my tongue out at you here lol.

Titan - is right. Chemo is a crap shoot but heck we have each other don't we and we will and do get through it somehow.  When you are down just feel all those hands holding yours and you will be ok.

Hope - I have pain in my neck when I turn my head side to side. I have wondered what it is but put it down to stress from typing.  Yep lets choose option 3.  

OBXK - how is your chemo going.  Hope you are ok. 

Slv58 - lumpectomy was not an option for me. They recommended mastectomy and I went for it.  My BRAC came back as inconclusive, whatever that means, but I do wish I had, had a bilateral mastectomy as the prosthesis is hot in the summer, I personally think one breast looks ugly now just hanging there without its sister and the specially made bras are frecken expensive.  I get my prosthesis free but only two bras are free.  Where the heck does two bras go, its just not enough so I have to buy more.  You could always ask for a second opinion but in the end its the decision you make that will be the best and you will make it eventually.  Good luck and know that we are here for you.

Don't forget all you ladies having chemo that water melon is a god send, yogurt is nourishing and light,  ice lollies (don't know what you are call them but ice lollies on a stick,  frozen) are another god send.  If you don't fancy icecream have a fruit ice lolly and drink plenty of water. You will be surprised what a couple of litres of water's difference will make per day.

Gilly is right soup is excellent too and you will get all the nutrients you need from chicken, vegetable or some other flavoured soup without it being heavy on your tum.

Have a good day ladies, relax if you can cause you can think better that way. Hugs Annie.        

SherylB

slv58,

I too found a new appreciation for life. I have found breast cancer to be a blessing as I found myself before my diagnosis asking myself is this all there is? The answer was no. I have reconnected with family and friends and feel so much love and support from people that have touched my life. I look at the sunshine in a different way and am happy in a weird way, more than I have been in many years. Now I am not some susy sunshine, cancer sucks, and the SEs of treatment are really horrible to me. I am a bit of a drama queen and seem to feel everything with a sense of awfulization and grandiosity. A paper cut can annoy the hell out of me. But in answer to your question I have found on these boards that many of us have found a new appreciation of life, love, and family.

Enjoy the blissful moments they will help you get through the really fuc....ed up ones.

Sheryl

5thSib

Hello all. Hope everyone is having a great day. I'm off to Taxol #3 in a few minutes.

Mumtobe -- I had lumpectomy -- Stage 2, grade 3. 1 node positive. I was told results were the same as long as radiation is done. Good luck with your decision.

Luah

Mags: Hugs to you sweetie. I understand the worry you're going through.... fingers crossed all is fine, and I really think it will be!

Sylv: Loads of women have Lx and are doing fine. Twenty years of evidence shows equivalency in outcomes. (Lx is much more commen in some regions than others). This is another good site to check out:http://hormonenegative.blogspot.ca/

There are certainly some medical reasons for choosing Mx over Lx (BRCA+, multi-focal, very large tumour etc.) but being TN isn't one of them. 

Good luck with your decision. Ask your docs lots of questions and be at peace with your decision, whatever you decide. 

Fighter_34

Hi ladies! Dropping by to check on everyone.

Yes, Chemo is no walk in the park, but you can get through it, and this board is heaven sent. Whenever I needed a pick me up I could just log on and see that I am not alone. To me loosing my hair was the hardest part, but after my hair started to regrowing my confidence and sense of well-being slowly came back.

And like so many others have mention, facing cancer has really made me face life issues that I put off or would have put up with. Life is too short to be anything but happy and at peace.

I wish every well and bye until we chat again. (Group Hug)

minxie

Chemo is wretched. I don't know if I'd do it again. There, I've said it. But for you all in the first go round, I'm afraid with TN it's a necessity since it the only thing that works. I so wanted to give up after my 5 or 6th week of taxol, the misery didn't seem worth it. But I finished it out - because I had to.



Well back to the surgeon today for yet another ultrasound/needle aspiration. Breast was size of small watermelon. They agree with my theory that having so many lymph nodes removed is keeping this from draining properly. I am sure getting tired of this ! Had to take another week off work, have to keep my right arm in a sling so I don't use it. Good news is that the expander is doing what it needs to and if this stupid fluid ever goes away and this heals properly, we can do exchange in about 8 weeks!

gillyone

((((minxie))))

onvacation

Late to post - but Annie - so sorry for your loss - sending HUGS and Prayers.

Luv - have a wonderful time in Hawaii.

InspiredbyDolce

Hi Jodi,

Here is the link, you can click the drop down and choose what your topic is and then submit your question.  They will e-mail you when your question has been answered.  Please PM me and let me know if you got through (I sometimes miss notes on the forum).

http://www.hopkinsbreastcenter.org/services/ask_ex...

Wishing you the best!

Breast Cancer Questions:  Ask An Expert - John Hopkins Breast Center

shadytrake

I'm here just Dx with TN last Friday.  I finally got over the shock and I've had a good cry.  I met with my surgeon on Tuesday for my post-op consultation.  He absolutely does not recommend a Mx.  He said I should prepare to have chemo and radiation even though the tumor size is 8mm.  He said I am right on the border of chemo vs no chemo.  They automatically recommend it at 1cm tumor size.  I have accepted the fact that I will be having both.

I am working on giving up processed foods (day 2) so that my diet is filled with healthy foods.  I figure I'll throw everything at it.  I started taking calcium viactive chews and drinking a ton of water. 

I'm sure I'm just having a good day and there will be many more crappy days to follow but I'll take it.  Monday is the big day, the visit to the oncologist.  Then Thursday the visit with the Radiation oncologist.

OBXK

Minxie - Lawd, that's a large pocket of fluid. Hope tying down the wing helps, so that you can get on with life!



Mumtobe - kudos on finishing chemo!



Just started my 5th round of carbo/gemzar. Stayed in the bed all day reading. Only got up to make myself some matzo ball

soup



Anyone in line for the nor'easter blizzard this weekend? Warm wishes.

Hopex3

Minxie, Sorry your having a rough time. I hope you get your exchange soon and be done with it all. I just had my expanders put in two weeks ago and hate them. They hurt. I'm thinking I should be wearing some sort of a bra. Seeing PS tomorrow and will ask him.



Shady..sounds like you are right on track. I did the same as you and gave up processed foods. Drinking lots of water during chemo really helps. I would have to drink about 16'glasses of water during that time cause I would get so dehydrated! My onc put me on Vitamin D as my levels were low and that has been shown to be a factor in BC! Best of luck to you!

SherylB

shadytrake,

Welcome to the place no one wants to be but I promise it will be the most informative, supportive, encouraging place you ever visit. You will find more compassion, empathy, and support from this group than you can imagine. The worst part is waiting to know the plan and getting started. It sucks but as so many others will tell you it is doable. Hang tough and stay tight with these boards.

Hugs,

Sheryl

By the way I lived in Mississippi for 10 years and absolutely love Memphis, it is a great city.

Babs37

Young people have theirs,

now Seniors have their own texting codes:

 

*ATD- At the Doctor'                                                                                                                                                                                                

*BFF- Best Friends Funeral                                                                                                                                                                                   *BTW- Bring the Wheelchair                                                                                                                                                                                 *BYOT-Bring Your Own Teeth                                                                                                                                                                                                                             *CBM- Covered by Medicare                                                                                                                                                                          *CUATSC- See You at the Senior Citizens                                                                                                                                                                                                                   *DWI- Driving While Incontinent                                                                                                                                                                                                               *FWIW-Forgot Where I Was

*GGLKI-Gotta Go, Laxative Kicking in

*GGPBL- Gotta Go, Pacemaker Battery Low                                                                                                                                                                                                                          *GHA- Got Heartburn Again                                                                                                                                                                                                                   *LMDO- Laughing My Dentures Out                                                                                                                                                                                                                           *LOL- Living on Lipitor                                                                                                                                                                                            *TOT-Texting on Toilet

shadytrake

Thanks all. I'm hanging in there. I was pleasantly surprised that the new Kroger expansion has a whole wing of organic food choices and very reasonably priced compared to "Whole Paycheck" Whole Foods LOL. I got some cage free grain fed eggs, almond milk, and a new gluten free cereal. The rest of my basket was filled with fresh fruits and veggies. My hubby, who is the best cook, made stuffed yellow bell peppers for dinner. Tasted better than anything on the Taco Bell menu.



I know I can do this. Today's goal - walk 20 mins during lunch break. Monday can't come soon enough.



Anyone obsess about self testing? I'm constantly thinking any pain is more cancer (I discovered mine because it was extremely painful - apparently not the norm).

tisthyme

shadytrake- I found my cancer because it was painful too.  And I think most of us 'go there' with any ache or pain.  Perhaps less often the further we get out from treatment, but I know that I still obsess 1 year out from chemo.  Good luck at your appointments next week.

adagio

shadytrake, tisthyme - my cancer was also extremely painful and the pain was present long before any lump was felt! Perhaps pain is not so uncommon! I vaguely recall reading somewhere that many women with triple negative experienced pain.

shadytrake

adagio, tisthyme - all I can say is that it hurt like h$ll.  I about wanted to kill the resident who did my biopsy.  After that, I requested only trained Drs and Nurses to stick me.  Maybe this is one of the symptoms of TNBC.  I'm surprised that an 8mm tumor could cause that much pain.  It felt like a hot poker.

adagio

Shadytrake - Agree with you regarding the pain - brought me to tears many times. The biopsy was a killer even with the most experienced radiologist doing it!! Will never forget that pain. Thank God since surgery - no more pain.

5thSib

shadytrake -- I don't think the tumor size matters when you are TN -- chemo is the recommended treatment. Sorry you are having to go through this, but you will find a lot of support here.  This board has been so helpful to me. Everyone is so supportive, but honest too.

I had my 3rd Taxol treatment yesterday. A few SE's but nothing like AC. I am so thankful to be through with AC. I feel so much better than I did.

You know it may be strange but I really haven't missed my hair. I think losing it was a blessing in disguise because there were mornings during AC that it was all I could do to get in the shower, and I sure didn't feel like having to wash and fix my hair or shave. Putting on a hat or scarf is so much quicker.