Calling all TNs

Luah

Katfinn:  I was considering that option too; had a good discussion with my BS about it. Are you BRCA +? 

Regarding surgery for TNs, there is some good information from experts right on this site. http://www.breastcancer.org/symptoms/diagnosis/ask_expert/2008_07/#q20

To be honest, I have always been more concerned about distant recurrence, which TN is more prone to than local recurrence, and surgery doesn't change that risk. But that's just me.

Hope you get some good information so you can decide and feel good about it.

Lynn18

katfinn:  It's always good to get a second opinion.  One option for you if you do radiation would be to be closely monitored with mammograms and MRIs twice a year.  Your doctors may be planning to do that anyway. The link that Luah provided has really good information.  Personally, I don't think I would have a BMX for early stage TN, but it really depends on so many things, like BRCA status, family history, your personal comfort level.  Good luck!

riley702

Thanks for the link, Luah. I liked this part:

"Simply to call a cancer a triple-negative breast cancer to a certain extent points to some of the problem that we are dealing with. Imagine walking down the street, seeing a red-headed woman and turning to the person you are walking with and saying, "There is a non-blonde non-brunette who doesn't have a beard!"

bak94

Have I ever said I adore my mo? He is so wonderful, he came into the hospital today and we had a little chat. He was warning me of the after treatment blues, but said we are doing everything possible to make sure this does not come back. I know there are no gaurantees, but it is nice to know that we are trying everything! It's like he answers my concerns before I ask. He has been doing this a long time and I am sure he is well aware of how us patients feel. He lost his first wife to ovarian cancer in the eighties and I think that is why he fights so hard for his patients. Sad thing is he is going to retire soon:( After all, he is in his seventies-he deserves to go travel or do what ever his heart desires, although I think treating patients is his passion or else he would aready be retired! Sometimes I can not believe how much knowledge he has, from experience and he keeps up on all the new protocols and studies.

Suze35

bkj - I adore my MO also, it is wonderful you have someone you can really trust. he sounds like a great doctor, keeping up with new things, that is awesome.



Saw my MO today for my continuing headache. She ran me through some simple tests to rule out the really bad things, and thinks it is either a bad migraine, or side effect from Xeloda. Said the Avastin wouldnt hit this hard this quick. So she called a neurologist and got some recommendations for meds, and I am stopping Xeloda for the weekend. So far the Imitrex is working ok, I have something else to try, starts with an F... anyway, hopefully I'll continue to improve.



New worry - very sore spot over my scapula. Just inside the radiation field, so MO thinks it's related, could even be a fracture. Great. If it persists, x-ray in a week or so. Of course, I think mets. Sigh.



Have a great night everyone. I'm really fuzzy, so not great at the moment responding to all.

Titan

Kymn..lmao..picturing a moose in your freezer....and you will start feeling better soon...give it a little time...chemo stays in your body for a long time after you are done...I'm almost 2 years out from the end of chemo and it's really just now that I feel like I'm getting back to the person I was b-4...it does get better every day..you will notice the changes. I no longer leave the house in the morning and have to turn around to come back home to see if I turned off the coffee pot, hair straightner, put the garage door down..oh..and to make sure if I have the same shoes on instead of two different ones...

Hope your headache eases soon Suze...

Have I said "Cancer Sucks" lately?

On a side note...I ordered the alcohol today for my DD's wedding..I think that was the most fun of all the planning so far..

bak94

Suze53, with my last cancer I had rads on the right side and I had horrible rib pain within the field, it wasn't mets and was rads related, hope yours is rads related also. I mean it hurt! If I laughed too hard I would also get muscle spasms in that same area. Unfortunately the pain did last awhile and I constantly worried about it!

Titan, glad you are starting to feel more like yourself! It takes awhile, either we get used to our new normal or are fortunate enough to get back to our old normal!

roxessence

Hi everyone - I've been stalking silently for a few weeks now - just trying to acclimate myself to this whole TNBC thing... I've learned so much just from perusing the forums here but wow, sometimes all the shortcuts can throw a newbie for a serious loop!!

So...history? I've been extremely healthy pretty much my entire life [I'm 57]. Had a surreal car accident on Feb 1st [T-boned - fractured pelvis] that hospitalized me for a month/laid up for 2 1/2 months. In that time, I noticed a painful lump on LB along w/bruising on left side - nurses reassured me that it was "just" trauma from the car-door caving in on me! Long story short - didn't go away. TN Grade 2 Stage 3, 4 nodes all clear. *shudder* ................yeah. Still waiting to wake up from this endless nightmare.

Glass half-full? I continue to be Very healthy/Very positive & dammit, I'm determined to Stay that way. Soaking up all this good info/wisdom like a sponge is going to go a long way in helping me hold onto that focus, I can tell already!!

I'm sure there'll be a jillion questions for you all [if i can just remember the damn things - can't even blame chemo yet as it hasn't started!] My onc says the drugs will have to wait til the lumpectomy is completely healed - it's been over a month & the seroma is still draining. [YUCK]

Anyways, this is me in a nutshell, i guess. Nice to meetcha!! Looking forward to getting to know you wonderful strong women in the coming months. Kicking cancer's Ass & taking names?? Oh Yeah!!! 

FrancesC

Hi roxessence - sorry to hear of your accident and dx.  Welcome to this wonderful forum where we can share experience and information and learn to deal with each of our very own fight better.  Hang in there! we will beat the crap out of C.

Lovelyface

Roxessence, I am just like you, my 53 years of life perfectly healthy, no falls, no fractures, no diagnoses, no high blood pressure, no nothing, and then breast cancer strikes.  I also don't have any risk factors, no one in the family had any type of cancer, touch wood, I am the first.  Nobody knows what this beast is, nobody.  When I read books about how cancer is a huge imbalance in the body, I feel so outraged, as I never felt any imbalance.  I was perfectly healthy with no medications.  If only, I had a small clue where it comes from, especially the TN, why is that so different from the other types.  There are no correct answers.  One thing I must say is that you being so healthy, is great, it will most definitely help you with your chemo.  I felt really great when my doctor told me that at least I can take in the drugs, there are some unfortunate women who have other diseases and are not able to be given chemo.  So I count my blessings that I was able to take in the treatment.

My MRI results came out today, which is not bad.  However, there are things which are disturbing such as "a greater amount of background glandular enhancement is identified".  This worries me why there is greater enhancement on the left breast where the cancer was.  I am surprised since this breast had 30 Rads, so why the enhancements just 3 months finished rads?  Does the Rads cause enhancements?  Has anyone else experienced this?

Paintingmywaythru

Katfinn...Dr. Irene Kuder @ MGH is a well known oncologist. There is also someone else on this baord who has an onc from MGH and thinks they are the best.

I ahve been in the hospital with Low WBC and fever and mouth ulcers. Rough ride. Just got discharged on antibiotics, anti-fungals, and miracle magic moiuthwash---but hven't been able to eat or swallow much of anything. It sucks when it hurts to put water in your mouth.ANd I have open studios today. My family will play me. I can't talk.

The onc says my body reacted as though it got too too much chemo and htey will reduce the dose and see how I do. Can't be sure I will be over these problems by then. Hope so.

After a day, I Got very grumpy in the hospital so I knew I was getting better.

Best to all.

kyroheal

Roxessence, welcome to the board! You will find alot of support here. In keeping with the glass half full, your accident may be a blessing in disguise, leading you to the discovery of your lump and thankfully before node involvement. Goodluck, you will be ok.



In regards to the BMX discussion, I am considering this avenue as I am only 27 years old. My thought is if I can reduce breast tissue (I realize there must be some left) I can reduce my chance of a new primary. I realize that I would be closely monitored with MRI ultrasounds etc. But I don't want to find anything!!! If I get something else, that means more surgery (BMX for sure at that point) and possibly more chemo which would be a nightmare. I just feel the downside to a recurrence is alot worse than the downside to a BMX with reconstruction. I don't know I'm still thinking about it and it's a very hard decision. I also wanna do rads-basically want to pull out all the weapons.

Teka

Worrywart Lovelyface,

You need to take a time out from all the BC crap.   OOPS!!!!   You'll still be OK after pet scan.   I need a time out!

Suze35

Okay...Imitrex really helped, thank the flying spaghetting monster above!!!  Feeling much better today, just a lingering headache.  Of course, I stopped Xeloda yesterday, so that could also be helping.  If it is the Xeloda, my doctor said we'd find a way to deal/control it.

katfin - I think you really have to assess your level of comfort.  Mammogram proved useless for me due to dense breasts, and I had so much disease so soon after a clear mammo, I just couldn't fathom worrying about it down the road.  I chose the BMX.  I also wanted to be "even."  I haven't had reconstruction - I will do that in a year or so if I stay clear of cancer - and I'm very comfortable with my choice.  BUT, lumpectomy is a perfectly valid option, and just as effective.  So you really have to reach within and decide what you are comfortable with.  If you want a second opinion on surgery, I had mine done at MGH with Dr. Michelle Gadd - she isn't very touchy feely, but she is one of the top breast surgeons in the country, and specializes in node removal.  In fact, she helped pioneer the SNB.  Everyone who sees my scars comments how wonderful they are, I had great ROM very soon after my surgery, and my LE is very mild.  Skill of your surgeon is important for these things!

Kymn - moose!!  I live across from the NH border, so hunting moose is pretty common.  I've seen one or two, but not many.  I love fresh game - elk and deer when cooked right is just so yummy.  My friend's DH has a game dressing business, so I always get some each year.  YUM!  I know what you mean about hitting one - I hit a small deer on the highway, about the size of a large dog.  I just plowed into it at 70mph.  Obliterated the poor thing.  But man, the damage to my car!!

roxessence - welcome to the club NO ONE wants to join!!  I agree with Lovelyeface, your health will come in handy.  I was extremely healthy prior to this (younger than you at 41), and had very little in the way of compliations from chemo, surgery and rads.  I healed well and quickly.  I also think it can help our immune system fight the cancer, as it doesn't have to focus on other things.

Lovelyface - I'm not sure about rads causing what was found - but I would think YES!  Rads changes the tissue in your breast from what I can gather, toughens it up a bit.  Which is why some people notice their radiated side is "perkier" than the other side, more leathery.  I also know that changes from rads can show up in imaging for months after you are done.  Has your doctor told you it is anything to worry about?  I am VERY happy to hear the MRI is clean, now go get your clean PET scan and BREATH!!!

Painting - I may be the one you are thinking of when you said Boston and loves MO, but I actually have my MO in southern NH.  I consulted at MGH and would have been fine with the MO I met there, but I just adore mine.  She is so responsive and caring, and open to complementary methods.  She really works hard to help me feel my best, and is willing to consult with other doctors - i.e. she called and talked with a neurologist about my migraine to make sure I got the best medicine.  I'm so sorry you were in the hospital, but I am very glad you went.  It can be scary when our WBCs get so low...reducing chemo dose seems to be very common, I hope all goes well with you next round.

kyroheal - OMG, you are way too young for this S&*^%!!!  So not fair, my heart breaks .  Your rationale for BMX was similar to mine, I'm glad you were able to make a decision you are comfortable with.

~~~

Hot as hades here in the NE again!  My water bill is going to suck!  I'm only watering my front yard, who cares about the back, lol, and I have to water every stinking day.  Plus my garden, which isn't liking this heat too much except for the 'maters.  And the june bugs - ugh!!  My poor roses!!  I don't use chemicals, and have those bags hanging all around my yard, lol.  Hope everyone stays cool and has a great day.  If you can't tell, I feel much better .

MBJ

Kyroheal:  IMO:  If the dr's aren't suggesting a high chance of recurrence in your other breast, then to me it's kind of like cutting off a good arm when it isn't diseased.  My mamo on my right breast has always been good and since I have changed my diet and added certain supplements I also no longer have very dense breasts.  My recent mamo was crystal clear and NED.  This is a huge improvement from my mamo in 2009 when TNBC was discovered in my left breast.  Although I am older then you, for me I wanted to hold on to as much of myself as I could.  Also, I had zero node involvement and since I did an MX I didn't need rads.  Doing rads unnecessarily can hurt your reconstruction options and you should really consider this, too.  I got 3 opinions from 3 different hospitals/dr's and was better able to make my decisions based on this.  Know that even if they remove both breasts BC can return elsewhere, especially with TN's.  So removing a healthy breast is no guarantee. 

Suze35

Quick vent...my in-laws are in town helping out this week...generally well-meaning people, but drive me a bit batty.

If I have to hear, one more time, that "something good" will come out of my cancer diagnosis, I will frickin scream!!  There is NOTHING good about what I am going through, I did NOT need a reminder about how much my family means to me, and I have NOT found a sense of faith that I was missing (I always have had one, just not the SAME one as my in-laws)!!!

Ugh, okay.  Back to regular programming.

MBJ

Suze:  Big hugs coming your way!

Lynn18

Suze35:  I've been told that also . . .I think that must be one of the worst things to tell a cancer patient.  I met with a support group facilitator, and when she suggested that, I decided not to go to that group.  I agree with you!  

Suze35

Thanks guys. I don't mean to step on toes - I know some people truly can find the good in this. Wish I was one! But I know you all understand . Sometimes I want to pull my best Seth Meyers with them - "Really? I mean...reallly?". Lol.



Lynn - man I would have run from that group too! I think I need a good, snarky, sarcastic group myself.

Anonymous

OK guys... here's another one of "Heidi's Diversions"... might need to warn some that is has a bug in it... a big one. But you guys wouldn't expect my postings to be normal or routine anyway...right?

http://albums.phanfare.com/isolated/Z438SkkY/1/5203096

blondelawyer

My brain MRI was clean and my breast MRI was okay--it looks like that while the tumor is still large, there is quite a bit of necrosis in the middle, so my oncologist thinks that the chemo is working.  The plan is to have one more round of chemo (AC) and then go on for surgery. I met with the surgeon on Thursday and have my last chemo on 7/25.  We won't know for sure if I will need additional chemo or radation post-surgery until after the pathology comes back from surgery.  

roxessence

Heidi, I've only been around a little while here but already I smile as soon as your name comes up in a post! I Love your style, woman!!

Suz, I Totally hear you about the club NO ONE wants to join - whew, ain't that the truth! You have my sympathy re: your in-laws too. Damn, ppl just don't get it sometimes. I've already told friends/family/work associates that I won't stand for platitudes/"poorYou" crap. The "everything happens for a reason" BS has been going around here like a plague lately - I'm sorry, some reasons are Just Plain Sucky!! Really!!!

Painting, you were dx right before I was...already you're having such aggravation w/chemo? GAH - that's pretty scary s**t! I'm really sorry you're going thru so much pain right from the get-go - it's gotta be horribly discouraging for you, hon. Sure hope they figure out exactly what's giving you hell like this & make it Stop!

Kyro - 27??? Seriously?? *shakes fist at cancer* You have Such a fantastic attitude, girl - I just Know you're going to whip this thing w/an ugly stick!

We're enjoying real summer for a change hereabouts - after the nasty wet spring we had, I don't have a problem w/a little heat! Trying to maintain positive vibes is pretty tiring - we're heading to bed early! Have a sweet night, all. No SE's!!!

riley702

roxessence, that's the spirit! Kicking ass and taking names. Feisty is good, I'm convinced.

kyroheal, my thought process was very similar to yours, and my BS, onc, and RO were all on board with whatever I felt comfortable with. It truly is your decision, so research your options, run the pros and cons, and then go with your gut. The more I found out about BC, the more I realized I already knew what I wanted to do. So, I did.

Heidi, neat! Even if they are ugly suckers, that photographer managed to capture beauty.

ETA: How does something bigger come out of something smaller?

Titan

Cicada's FREAK ME out!  Especially when they drop out of trees on your head..Yikes!

katfinn

Thanks with the help of names of hospitals and oncs in Philly (to help me decide if I want to have a BMX as preventative measure for peace of mind).  It looks like I may go to Boston instead.  I called my onc's office and he suggested Dana-Farber's Dr. Eric Winer (guess they know each other) since he has studied Triple Negative.  I had just spoken with a women from the Boston area who sees Dr. Winer and highly recommended him.  She is 6 years out but had a recurrence (same breast and tumor and then in more lymph nodes) and while her cancer has metastasized, she is living with it and has been clean for 2 years.  She didn't come out and tell me what to do but I could tell that she thought I should have my breast removed.  It will be interesting to see if the fact that my tumor was small and that my sentinel node was negative and that there is no BC in my family will have him conclude that I should or shouldn't have the BMX.  I think he's dealt with a lot of TNBC.  I just want to make sure I'm doing all I can to prevent having to go through this again. 

Luah - Thanks for posting that link that explains that a lumpectomy with chemo and rads really is equal to a mastectomy.  I have read that before but needed to see it again.  I do prefer this path (the one I was on before this little panic set in) and kind of hope that the 2nd opinion doc agrees with this in my case. 

I'm sorry for those of you that feel yucky in this heat.  I just got my taste buds back and the nausea has stopped so other than feeling tired and having a few hot flashes, I'm pretty happy.  Those first two weeks after each chemo are not fun but I love week 3!  Hang in there...

Lynn18

katfinn:  Eric Winer is a member of the advisory board for this site; I have seen his name a lot.  That would be great to see him, especially since he studies Triple Negative.

Heidi:  Those are great pictures.  I have never seen a cicada that was green like that.  The ones I see are brown.  I thought he was quite pretty. 

Paintingmywaythru

Blonde Lawyer- great news!

Suze 35...I am getting annoyed at someof my friends who think homeopathy will cure me. Geez...enough on the advice...OK if one has read up on Triple Negative....want to call it NNN...but when I was in the hospital one friend called and was sending spicy ginger chews to cure my mouth ulcers...OUCH!

I think well intentioned is great but needs to come withcareful thought. And I'm probably sticking my foot in my mouth.

I knew I was getting better when I got grumpy in the hospital yesterday when it took them 3 hours to get me a vanilla ensure shake and, first came nothing, then came chocolate ( no desire for chocolate) then my annoyance..then came the nutritionist with a cooler bag of 6.

Beautiful day today.

Anonymous

To all- the Cicada WAS pretty, though I agree that the ones I see around the farm typically are not as bright and colorful. It was beautiful iridescent/dayglow green with gold flecks. I started taking pics with my digital SLR but quickly switched to my little point and shoot. And, just for you guys (Warning, violent image approaching)... I was bear-assed naked while I took them. Talk about bad timing. I had just showered in the cabana and was headed back to the house (yes, our place is private... wouldn't do that to my neighbor's eyes, as they'd need acid to erase the image) when hubby spotted it. He ran and got the camera and I put my clean butt in the grass and started snapping photos. Gross, right?

You heard it here...

MBJ

Lol, Heidi, as always you have brightened my day a little! 

Blondlawyer:  Congratulations!!!!  That's the best news ever.

bak94

That is too funny Heidi! Good for you, never miss a moment!