Calling all TNs
Comments
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Titan, I also had a lumpectomy and my definate understanding is that the statistics are just as good for lumpectomy plus radiation, as for a masectomy. That is what my MSK surgeon told me, and what I've read.
Dispite no family history of BC or other suggestive factors for a genetic link, I did have the testing done because I have two daughters, ages 20 and 23 (amazingly insurance paid). It was negative for the BRACA mutations, but my Onc, who also has a Ph.D in genetics, says my daughters are still at greater risk than the general population. He says there may be genetic links or mutations we have not yet identified.
My heart is heavy for the poor 25 year old girl, and her parents.
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Claire..since I'm a very inquistive person (maybe a little nosy)..I googled skin mets and what you have on your scar doesn't sound like that at all...but let us know what your doctor says.. I have a little blister on my arm that I freak out about now and then but it is the only one..I just wish it would go away though...
I am going to talk to the onc about the test. I think it would be alot of stress for both my daughter and I..and neither one of us needs that...right now..I'm 19 months out..I just want to live in the land of denial for awhile..it feels good...
Since I'm over 50 now..wow..when did that happen..oh yeah..year full of BC treatments..anyway...the colonoscopy issue is coming up..YUK! I'm putting that off until after Christmas..
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Thanks everyone for responding.....Sometimes though..being TN..I freak..other times and hearing from other people that are tn (coworker)...they say it is really not that bad.
I will let you all know how this 25 year old is doing..she is meeting with the onc tomorrow...
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Titan: I had bilateral mx, and am BRCA2+. From what I understand and believe, it is a very hard decision for anyone whether to do lumpectomy vs mastectomy. It's a personal choice, and I don't think there is necessarily a wrong or right decision. Also, they tell me there's no difference in prognosis between the two. However, I think being BRCA+ does have an effect on local recurrence. In my case, I am 43 at dx, which sent up red flags to my BS and he recommended testing based on that. I went ahead and did it because I didn't know much about my dad's side of the family, and I have a half sister with BC dx at 41. I was shocked I came back positive, and had already decided what I would do if I was based on what I'd researched. However, being BRCA+ doesn't mean a person will definitely get breast cancer or ovarian... it's just a marker indicating your chances are greater. Being tested is a personal choice, and I know of many who have decided against being tested... who had only lumpectomy... and refused ooph even though their doc recommended it. You have to do what you feel you need to do.
That being said, I chose to have a bilateral and am glad I did it. I didn't want to be BRCA+, but since I know I am, now I can try to encourage my daughters (who've just been tested) IF they come back positive. I was also able to contact my half sister and inform her (she's also being tested). I hope everyone comes back negative, but there are things they can consider if they are positive. And at least they'll be able to keep a really close eye on things. Me personally.. I will have the ooph. I don't relish the thought (early menopause and all that), but I'm completely comfortable with the decision.
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Titan - I so hope all goes well for the 25 year old from your town. A friend of mine was diagnosed with triple negative at 29 years old. It was 3 cm and had gone to some lymph nodes. She had a lumpectomy and radiation and that was about nine years ago. She's doing really well and has since married and had two children. She was such an inspiration and support to me after I was diagnosed.
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Titan- you are just having a moment of self-doubt. I think we all get that from time to time and the 25 year old brought it to the surface (BTW- there's a thread in here with a Stage 4 16 year old).
Stats back up the fact that a lumpectomy with chemo & rads has as good an outcome as a mastectomy. Don't second guess yourself. If Mx was the way to go in all BC scenarios we'd all be boobless wonders.
As for the BRCA, I *did* ask and was told it wasn't necessary, especially since I did not have daughters. Like mitymuffin said, there is still so much to learn about individual gene expression and how it impacts BC. They just don't have all the information needed to accurately predict who is most likely to have a recurrance.
So, it's back to the crapshoot odds.
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Titan: I understand the doubts, I have them myself sometimes too, but given all the research, I can't see how the trip neg status of our tumours means that Mx would be any more "effective" than Lx in removing the tumour as long as clear margins are obtained and it's followed by rads. Yes, the risk of recurrence for us is higher in first 3 years, but it's still, overall, a relatively small risk. And cancer can and does come back after Mx too. As you know, it becomes a personal thing of what you feel most comfortable with - which is different for everyone. The real thing I think we all fear is distant recurrence, which our surgical decisions don't have much to do with. At least that's how I (sometimes) sleep at night. LOL.
As for BRCA testing, I asked for it and got it as both my sister (at 54) and a maternal aunt (at 88) had BC, and as I had a higher chance of BRCA being trip neg. Thankfully I was negative, so I put off any thoughts of biMx and ovary removal. Even so, my onc said the same as mitymuffin's - there may still be something genetic going on that hasn't been discovered yet.
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Sugar77: I love that story about your friend!!!
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Titan, I too had a lumpectomy. My onc and radiologist all agreed, because of the TN status, I was going to have radiation in any case, so that wasn't helpful. I did get BRAC tested - they didn't require it but offered it as an option - and I came back negative and I had no spread. Had it come back positive, then I would've had to face the difficult decision -- I can't honestly say what I would've done, but I'm still pretty young, so I am guessing I would've opted for the bi-mx, but the ovaries removal really creeped me out (again, given my 'youngish' age). Statistically everyone agreed it was a dead heat between the lx and mx. I haven't second-guessed it. Yet. (eesh) I just finished rads yesterday, so give me time... (I'm also an obsessor)0
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Titan I just turned 45 and have already had my surgery-BMX. I am just now finding out I should have genetic testing. As far as I know-no one on my mother's side had BC (no one left to ask) and I never knew my father or his side. They are doing it mainly because I have a daughter (she is only 5!) I kind of wish they had told me this before surgery. If I am positive I might have gone with a double BMX.0
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Titan - I had the BRAC testing before any surgery. It came back negative thank god but they did it because I have no family history and if it came back positive I could have let the other girls in my family know. I had a lumpectomy without clear margins then a single mastectomy. If it had come back positive I would have had a double and the ovaries as well, am only 37 but dont want any more children (my one is quite enough
) My insurance paid 100% but I think I would have had it done even if they did not just to know. 0 -
Titan~ I had genetic testing because of my age, family history, and a second primary (DCIS) in the same breast but distal to the *big* IDC tumor. It was neg. I had a bilat and an oorph anyway.
I did this for several reasons: 1. I'm neurotic; 2. I have a family history of both breast AND ovarian cancer... in fact, my aunt died of OC while I was in chemo for my BC; 3. chemo put me in menopause; 4. I didn't want radiation (it is a personal thing I have against radiation). With all of that said, there are so many ways to go about treating TNBC. I don't think there is any single best way. FWIW~ My breast surgeon didn't want to do the uni-mx at my dx; he wanted me to have a lumpectomy + radiation. However, the 2nd primary was found on MRI. He also wouldn't do a bilat MX. He made me wait till after chemo for the prophy side so that I was absolutely sure that's what I wanted. But.... my onc was pro-bilat and pro-oorph from the get-go. Soooooo.... I think you are fine with your selected Tx. Just like I feel that MBJ and Sugar are fine with not having adria... And I'm fine without axillary radiation... {{{hugs}}}0 -
Lynn 18 Thank you. I wish you the same.
I too was horrified at the thought of losing a body part. Of course, it makes me somewhat sad, but what is a boob or hair compared to life? You will be given good meds. Make sure you have a small pillow to put under your arm, I've brought mine back into use now that I am getting radiation. My daughter took care of my drains for me. I probably could have done it myself if I had to. I showered by putting a plastic patio chair in the tub and I wore a rain poncho from the $1 store to cover up the Mx site until I could get it wet. I gave all my bras (from before) to charity and bought pretty camisole type ones from TLC.org that have pockets for the prothesis. That way when I wear a top that has a V neck or lower neck the lace shows where the cleavage would have. TLC.org has lots of pretty wigs and hats too. We are given no choice but to make the best of our situation.
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hhfheidi: Always the voice of reason with a good laugh!
Claire: It doesn't sound like cancer to me either, but I would still get it checked out for peace of mind.
lynne: go to the under construction site when you gain access to the picture forum. I am a Uni and I posted my entire process from the day before through until now. There is alot they can do with reconstruction and great support if you decide to do this, or if you decide not to, there are women who have posted what they look like without. Either way, it helped me make my surgical decisions long before I had my MX and gave me much peace of mind about what is possible.
Titan: I sometimes worry too that I should hae done both breasts, or should have done radiation or that I am not daily doing enought to prevent recurrence. I still feel as if the wind has been knocked out of me and I am trying to get back on my feet but I still can't stand for very long. If they cleared the margins, you should be fine. You did everything right forr you at the time just as all of us have. I thought that if one other person in your family has had BC you get the test. No one in my family has ever had BC, other cancers but not BC, and I have no children, so I didn't think a test was necessary.
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The Importance of Walking
Walking can add minutes to your life. This enables you at 85 years old to spend an additional 5 months in a nursing home at $7000 per month.
I like long walks, especially when they are taken by people who annoy me.
The only reason I would take up walking is so that I could hear heavy breathing again.
I have to walk early in the morning, before my brain figures out what I'm doing..
I joined a health club last year, spent about 400 bucks. Haven't lost a pound. Apparently you have to go there.
Every time I hear the dirty word 'exercise', I wash my mouth out with chocolate.
The advantage of exercising every day is so when you die, they'll say, 'Well, she looks good doesn't she.'
If you are going to try cross-country skiing, start with a small country.
I know I got a lot of exercise the last few years,......just getting over the hill.
We all get heavier as we get older, because there's a lot more information in our heads. That's my story and I'm sticking to it.
AND
Every time I start thinking too much about how I look, I just find a Happy Hour and by the time I leave, I look just fine.
You could run this over to your friends, but just e-mail it to them.
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Heidi - Thanks for the laughs!
Titan - I too had a lumpectomy, however I was denied chemo, so I know how you can always second guess the decisions made. I have decided to enjoy every day that I have and hopefully there will be many many days!!
Swiftbird - did you get chemo also?
I have gotten my results from my MRI and everything looks good - so I am once again clear (for BC) until the next round of appointments (March 2011). However, I did get the BRCA testing done (qualified by being the 3rd in my family- grandmother, great aunt, me - and a second cousin who died of ovarian cancer at 39), and I am negative for both genes. The geneticist, however, is stilll recommending that I go to the high risk ovarian clinic in November because of the family history, so I know that I will still be kept busy between now and March!
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lynn18; bilateral mastectomy was "the easy part" for me b/c I had done all my anticiptory grief (over the loss of my breasts) prior to surgery. I feel such relief that those troublemakers are out of my system now. No more painful mammos etc. Of course this is just about me. I am married 30 yrs; my husband just wants me around another 30. And I did get to nurse my babies. I can only speak for myself, of course.
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hhfheidi: Always giving me a great life--many thanks--I will be passing this one on!! 0
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Hi Everyone - haven't been on in a couple of days! Missed you all.
hhfheidi - oh boy I was laughing so hard I started tearing up - thanks!!
((((HUGS)))) to you all!
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Oh, Heidi:
Since reading your posts on this thread, I have had to double my use of Poise pads! You make me laugh so hard sometimes, I pee! (Excuse me please if I offended anyone).
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You guys always make me smile! ALL of you! Heidi..I do swear (and so do you ha ha)..that you are my twin...I was freaking out about the 25 year old girl..it just brought things back to me..I feel soo bad for her but...at the same time it brought back the memories of diagnosis and all that crap.....here you think you may be moving on a bit and the memories keep flooding back...ah well...
My DD came home from college today for the weekend..I'm busy doing her laundry...
Haven't seen my son since Sept 18...he is coming home next weekend..he will bring his laundry too....a friend is going to his school on Saturday and my son gave me his list.I'm sending him a big pumpkin......he will probably wonder what to do with it but what the heck.
Hey LJ..how are you doing? Being thinking about you sweetie!
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Heidi, I have to admit, I totally glossed by your post thinking it was some self-righteous, pat-myself-on-the-back post, then I thought..hey, it's Heidi, I ought to read it and then laughed my fat butt off. j/k Fortunately, for whatever reason, absolutely NOT planned... I didn't gain any weight through chemo, but am planning to start exercising once my stupid rad-ravaged skin heals... but in the meantime, I LOVE your posts. We have enuf to worry about for goodness sakes!! Thanks!!
fmakj, I SOOOOOOO had chemo. I was fortunate to get in at the Mayo, after having some hacks trying to immediately rush me into surgery for a double MX fist. My onc put me on chemo first.... carboplatin and taxotere. I went from a 9.5+cm lump to a less than .5mm lump during my chemo treatment -- what they told me was a "A+++" response and "best case scenario" situation. I LOVE the Mayo. Love Love Love ! Just finished radiation. My skin is a mess (I'm so SENSITIVE...but who cares) but it's done and I'm cancer free! YES!!
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Wow!!! I stayed away for a day or so and see it's been busy.
Monika/Lynn - I know facing surgery is hard and I wanted to send (((hugs))). I had a Bi-lat MX without immediate recon. I had planned on doing it later this year or early next year, but have decided to wait. I am just starting to feel better and quite honestly, not ready to be "down" again. I will have DIEP, but am just not ready and my onc made me feel better by saying, don't do the surgery until I'm really ready for it. And.....a hint - I used a body pillow to help keep me propped up and from rolling on my sides when I slept. It became my best friend.
Heidi - thanks for the walking tips, just what I needed to end the day.
LJ - wanted to let you know you're on my mind and hope to hear from you soon.
Hope everyone is doing well.....
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I think it's time for me to jump in here, I hope that's okay!
I was diagnosed with TN a little over a month ago, and I'm still dealing with the physical and psychological effects of it all. I'm 41 with 3 young kids (9, 6, 3), and have no family history of BC. It was a complete shock when I found the tumor. I actually have two tumors, about the same size, and 4 known lymph nodes. My oncologist insists I am Stage IIb, which I guess I'll accept since it has better statistics, lol. I just finished my second neo-adjuvant AC treatment, which hit me harder than I expected, and have 2 more plus 4 Taxol.
Has anyone not had a response to AC? I don't feel like much is happening with my tumor, and I know response to chemo is so very important for TN. I'm going to talk about it with my Oncologist in a week (next chemo), but was just wondering if anyone had any experience with switching chemo?
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Suze35: Hello and welcome to our group. I know that there are some here, Laurajane for instance, who didn't respond to AC--Most dr's at the major cancer hospitals here prefer to use Taxotere/Cytoxan but every Onc has there own viewpoint. I asked mine about the AC before I started because there seems to be a 50/50 split on those who do it, and he felt it wasn't necessary and too harsh. I think that it's an individual case by case thing and it does work for some. I felt immediate results from mine after only 4 x small doses every 3 weeks but I had 6 x only on the insistance of my former BS and my Onc felt even this was too much. Not alot changed between 4 x and 6 x. I hope that this helps and I am sure others will chime in here soon.
Laurajane: Thinking about you and I hope you are doing well. Gentle hugs!
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Suze35: My onc told me I should be able to tell a difference at the end of my second cycle of AC. And that is when I did feel a difference. I wonder if you could get a MRI or ultrasound to check also, sometimes it is hard to tell just by feel. Good luck!
Thank you to everyone who shared their experience about surgery with me. It sounds like most of you are saying it wasn't too bad. One of my friends said it was much easier than chemo. So I am feeling more positive and ready to do it. I hope you are also Monika!
The Importance of Walking is very funny, I started reading thinking we were getting advice about how important exercise is and then I read further and started laughing . . .thank you H.
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I cried tears of happiness today.
I cried because it felt good to be back in a classroom for a full day, growing minds.
I cried because everyone squeezed my boob when they hugged me and it hurt so good. (Anyone else have trouble with this?)
I cried because the kids all waved like crazy when they saw me driving my red hot sportscar convertible.
I cried because the music I was listening to on the CD was so beautiful.
I cried because it was such a gorgeous day and the wind felt glorious zipping through my hair.
I cried because I was so happy to be alive.
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hhfheidi: Yup - the only silver lining to cancer... I have had days like that too. So happy for you!
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hhfheidi - Love those days!! Glad to hear you had a good one.
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yay heidi! yay teka!
hope everyone has a great Saturday!!
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