Calling all TNs
Comments
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Seems like there are a few of us on this thread who are "weak positives" - in my case its the less than 25% PR+
I'm more than a month post MX and my Onco (who is wonderful, BTW) still isn't sure what to recommend. He's not advising any hormonal therapy with now 4 tests at 3 labs all agree that I am ER neg.
I was stage 1, sentinel nodes clear. At this point I'm not doing any chemo even unless he can come up with something that has a documened statistical chance of extending my life, which I think is reasonable. (I'm just not willing to take poison with out proof it might help.)
Any Stage 1 triple neg decide to skip chemo?
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timekpr- no chemo AND no rads? Please excuse my frankness, but IMO you are playing with fire.
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Welcome all newcomers, and I'm sorry you have to be here.
So has anyone else had an oncotype done? As I said to timekpr, my MO ordered one (and insurance agreed!). I'm interested in what it will show...
timekpr - have you had an oncotype done? I know they typically don't do it for TN, but with a weak PR, maybe your MO will get one. Even though I had plenty of nodes, my MO is having one done for me because my ER was 3% and she wants to see Tamoxifen will be of help. Not sure exactly how she gets that from the oncotype, but that's what she said. I respectfully agree with Heidi. For TN, chemo is the standard of care for tumors over 5mm (0.5 cm). The nasty thing with TN is that it doesn't seem to care if you are node negative - I read an interesting study that suggested TN through Stage IIIa had similar recurrence rates, irregardless of nodes. Chemo is the best option, and TN typically responds well. We (usually) only get one shot at this, if it comes back, it is chemo for life. However, this is a very personal decision that only you can make, just please be sure to read and be as informed as possible.
Day 3 of rads for me. My RO kindly ordered a cervical MRI for me (MO is out of the country until Thursday). I've had a stiff neck with pain for a week now, and he said while he really didn't think it was cancer (clear PET 3.5 weeks ago), there was no reason for me to worry and it was justified. I really like my RO, very understanding. So that will be Wednesday...fingers crossed that I remain the queen of false alarms!0 -
Welcome, FloreneB and timekpr
Suze35: That study sounds interesting. I have seen TNs progress even though they had negative nodes . . . I am glad you like your RO, I really like mine.
I have never had that oncotype test but I will ask my onc about it . . .timekpr, I have not seen many TN's skip chemo. There are two that I can think of and each of them had it came back very quickly, even though they were early stage and no nodes.
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Yep... it's the nodes "discrepancy" that really scares me. You'd think, being node negative, that you could breath a little easier. But TNBC doesn't seem to care if you have negative nodes.
When I first realized that recurrence occurred regardless of nodal status I was really freaked. My husband said something that really put it into perspective for me (and some of you in here have heard me say this before--- despite the fact that I am no longer as vocal as when I was first diagnosed on most topics--- because I try not to rehash stuff over and over).
Anyway, he said " think of nodes wrt a car wreck. If you got in an accident, wouldn't you rather have been wearing your seat-belt? You're still in a wreck, but your luck is better if you were wearing your seat-belt". I really liked that analogy and, more importantly, it helped to allay my fear(s).
Edited to add: yes, LVI is also a big factor to consider.
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I wonder if the people who have progression after clear nodes had LVI? Is that part of the equation?
I feel like I need to add some good news--according the the Triple Negative Breast Foundation, most TN patients do not recur. For our friends who do have recurrence, I am hoping for some targeted treatment, like Parp, very soon.
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My onc said LVI typically goes hand in hand with nodes. I had both, so I'm willing to hope it's all a crap-shoot anyway. But you're right Lynn, most TNs do not recur. Sadly, we come across them here, of course; the others have moved on and don't visit much, if at all (though some of us hang around as exceptions).
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Luah: I had both also. I guess many people do move on, I love hearing from people who are a few years out from diagnoses, though.
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Luah - I made a promise to myself that every year I go cancer-free, I will post to give hope to others in my situation. I hope I am able to do that.
Lynn - my MO said the same as Luah's - LVI goes hand in hand with nodes. I had both, obviously. But you can have LVI with no nodes, so I do think that is part of the equation. All of my doctors are pretty much amazed I'm still Stage III. I've had this very aggressive cancer (even by TN standards!) in my body for 8+ months, and it is still localized. Is it because the initial round of chemo did have a response until the end, or as my RO says, does it just like where it is? I am obviously still very high risk, and am under no illusions, but there is so much we just don't know about the impact of biology, diet, exercise, immune system response, etc... Which sucks, ugh.
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timekpr,
I always thought I would never do chemo. I wasn't going to put that poison in my system. If I had cancer I would just let it take its course. Boy was I wrong. I love my oncologist and I think she is brilliant. I swear her knowlege saved my life. I had surgery after chemo and was declared no evidence of disease on 10-21-09. Radiation after. It can be a very hard but I know you will make the right decision for you.
Heidi, first time I heard the seatbelt/car wreck story. Thanks.
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Because cancer can spread through the blood, even node negatives, TN or not, can turn in a stage IV. I read alot on the other threads and I saw some ER+, PR+, HER+, node negative, start their journey at stage IV. That is why we do chemo, to kill whatever escapes through the blood vessels too.
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Can I ask what 'LVI' means? Is that something you find out from your post-surgery pathology report? or would that have been in the path report from my core-needle biopsy? Just curious what it means.
dlcw
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timekpr..what was the actual size of your tumor? I think that chemo is recommended for most tumors over 1 cm...Of the two years I have been on this board I have heard of only one (1)..just one tn not having chemo...her tumor was very very tiny (under 1 cm)..there are few ladies on here that still had chemo even if their tumors were tiny...this thread is not a chemo vs. not chemo thread..there are enough of those on this board..but I would research very very carefully about your decision to not have chemo.....
Whatever you choose we will be there to support you..just please make a informed decision by talking to your oncs...ok......?
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Oh..and I still haven't got my path report yet. 2 years out..still too chicken...I don't know if I had LVI or not..do I want to know...maybe..maybe not...
Cancer sucks
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Welcome Florene!...You can learn alot here! If you don't know how to swear we will teach you..(right Heidi..) ha ha
Good for you sclst12! Let's us know about that hair..do you have some? Put that aloe on your head and massage it...and you can probably start taking Biotin now also...if your onc says its ok...don't be surprised though if you have hair showing up in some weird places that it wasn't b-4..very weird
I also lost my eyelashes and brows AFTER chemo...but they came back quickly
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morning all, don't know if this will help but nine years ago i would not touch any drug. Then i had a major breakdown - Bipolar - now take daily meds to keep my head together. Had first A/C ten days ago. My point is you cannot see my bipolar but the decision to take the drugs far outweighed the alternatives. Now using the same approch to the chemo.
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hi ladies havent posted here for a bit, but read your post im now down to my 8 rads to go hope your all doing well
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Titan- damn right we'll teach her!
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Thank you Teka! I will definitely be looking back at my path report from biopsy, and will have the MX path report on the 19th of May.
dlcw
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Hi ladies, I got some spam, too. Not too impressed that someone is so determined to spam us individually via private messages.
timekpr - I'm one of the women with a very small tumour (under .5cm) who did chemo. My onc recommended it so I did it and I have no regrets whatsoever! It's wasn't nearly as bad a I envisioned it would be. I finished in Feb. '10 and my hair grew back, I feel good and I've moved on with my life knowing I did what I could.
Welcome new people to the thread and I hope everyone has a terrific weekend.
I'm still a little tired after getting up at [dare I say...] 4:50 a.m. to see the Royal Wedding yesterday! I dragged my *ss into work yesterday and then had an awards gala to attend last night. Wow...I was so zonked when I finally got to bed early this morning. I'm too old for all getting up early and staying up late stuff.
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Welcome to all of the newbies! So sorry you have to be here but you have come to a great place to find support from others.
Re: Chemo vs No Chemo. When I was first diagnosed I was very ignorant regarding all things BC--Never thought I would do chemo, only wanted a lumpectomy, didn't want radiation--boy, I could go on and on about what I wanted. Well, what I wanted and what I needed to continue living were two completely separate things! I don't think I had LVI, because I also didn't need to have radiation. My advice: go get three opinions and listen respectfully to what these experts have to say. Titan is right, this is our only shot at it and if you have even a hint of LVI and don't do chemo now, you could end up having much worse consequences and then you're looking at chemo for life.
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That's a good definition of LVI, Teka. dclw, my path report from my biopsy said "no vascular invasion present", however, my path report after surgery said "vascular space invasion present". This was even though there was just a small amount of tumor. Sounds pretty scary to me, but like others have said, it often goes with having positive nodes. I wonder if it is more common with triple negative BC.
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Teka,
That was a great blurb on LVI you found, put into laymen's terms. It really helps the newbies understand the importance of getting, reading and understanding their path reports. Like you said: "cover your own butt".
This has been a *long* day. Up at the crack of dawn to man the wildlife booth for a local festival and then off to participate with my sons at a Relay for Life. I didn't do the survivor lap or hang around for the luminaries to be lit. Been there, done that. Time to move on....*way* too much "pink".
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Thanks to all of you for all of your kind words. Now that it is all ( I hope) behind me I realize what an ordeal I have been through. Try not to spend too much time thinking about the past and more energy spent thinking about the future. Although my case may not sound too promising in respect to PARP inhibitors, I still do think it is the closest thing we have to a cure. Because it initial worked for me, I am very hopeful. It has worked for over 60 women in the study so far. TN is a nasty and persistent one. Sending my positive thoughts and optimistic attitude to all you newbies out there. Stay strong!!!!!!
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Thanks Teka for the LVI info...as Heidi said it was written in language we can understand..I will get that dang path report this month...I will, I will, I will...
I swear I still have chemo brain..took the car in for an oil change on Friday am (the only reason I remembered to do that was because I put a note in my car)...and then when I left work I walked out in the parking lot..couldn't find my car ANYWHERE...started to freak..thought it was stolen or something...then i finally remembered...I said "f" it..and just walked to the dealership in my high heels...I was too embarassed to go back to work and ask for a ride.(short walk..must about a mile or less)....F it..I just went stomping down that dang street...
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What I don't get is: Do they exam the LVI in the tumor they took? I don't have LVI in the tumor as stated in the path report, but I have micro met (less than 1mm) in the first sentinal node. Anyone knows why?
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I'm pretty sure my path report didn't mention LVI. Is it because I did neoadjuvant chemo? I'm going to have to go drag that thing out and read it again, if I can remember where I put it!
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Speaking of Path Reports...Something to think about....I have 2 daughters (10 & 12) - so I made copies of my Path Reports and put other information together and put the copies in 2 different envelopes and labeled them for my daughters and put them in our safe. I hope they NEVER need the information, but if something should happen to me, then my daughters will have all of my breast cancer information.
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Titan - my path report was so terrible, I had my DH file it away someplace I can't find it, so that I don't obsess. Ugh.
Kelley - I am actually keeping a copy of my entire medical file for my kids, including all films and discs of scans. My stepfather's first wife died of ovarian cancer, and he really struggled to get information 15 years later for my stepsister. I agree that our daughters need quick access to this information, and hopefully they will never need it.
Beets - I seem to be following a long-term path such as you. It is really taking a toll on me mentally, so I am very happy to hear you are at the other end. I will keep you in my thoughts that you remain cancer-free! I agree about the PARPs, they seem to really help some TN.
So I don't know if I should be happy or not, but my supraclavicular node has reduced in size after 3 radiation treatments. That is great in one way - but it means that it is likely cancer, and not surgical changes, which isn't the best news. So I'll take the good - it is shrinking!
Hope everyone has a great Sunday! We are planting some rose bushes - my oldest son wants to grow roses - and am getting some broccoli and brussel sprouts down today too. Slowly starting to get our yard ready for summer.
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I, too, have a complete file container with all my medical reports.
As for LVI, they examine the surrounding tumor tissue submitted to pathology and test for it's presence.
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