Calling all TNs
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Palpable means you are able to feel it with your fingers. My tumor was also movable and not adhered to nything. My GP said that was a good sign as well.
Titan, you would get used to LA traffic, just don't buy a car with a manual transmission, your legs get worn out standing on the clutch!
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Mitymuffin - love your pic. You are beautiful!
My onco said absolutely no soy or flaxseed, even if I was triple negative. She doesn't want to take any chances. Plus she said I could get a new cancer that was er/pr+. You just never know. I will eventually be getting my ovaries removed, when I'm done with chemo and radiation.
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Mine also said no soy, no flaxseed. He took me off the Tamoxifen for now, since my tumor mutated, but is considering putting me back on after this round of treatment. I had a hysterectomy at 24, but they left one ovary. It doesn't function completely, but I guess they think it does enough to merit the tamoxifen.
I have to avoid all things that make me produce estrogen...... even though my dx is TN now. This crap mutates at the drop of a hat apparently.
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I was diagnosed Nov. 2009. I was treated according to MD Anderson's protocol, which is 12 weekly doses of Taxol, 4 doses every 3 weeks of FAC. I had a unilateral mastectomy May 2010 and there was no evidence of disease. According to research at MD Anderson, if you achieve complete pathologic remission, then your chance of relapse is 3-4%. Which means 96% survival!!! The researchers at MD Anderson believe that there are actually 2 different types of TN cells that behave differently. They can tell by the way the data tracks; however, they don't understand the actual difference in the cells.
I'll post the research that I have from MD Anderson on another thread.
PM me with questions if you like,
Brandy
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Brandy: I would be very interested in this study! Two different types of TN?? I never heard of this!
Kitty: Best of luck today and I hope that everything goes well.
Meece: My tumors were "well differentiated" and not attached to anything either. After the biopsy, however, they rapidly grew and one tried to attach itself to my chest wall and the other mutated into this bizarre barbell shape. BTW: I have a clutch and I was amazed that I actually kept mine for 5 years because they always burn out here! It's the steroids that make you so hyper.
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MBJ, I used to drive my Porche in that traffic, and my hip would be sore at the end of the day. You must have had great legs!
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My tumor was also well differentiated, but I had a lx immediately, and I only had FNBx to start out.
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I'm here too....diagnosed in 2007...lumpectomy, no nodes, DD AC/T followed by 34 rads with 5 boosts...still here and kicking 3 years down the road....this website saved me through the whole journey....
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Violet7 - I think you may be right about the TNs starting as hormone positive. My biopsy came back 50% ER+. Path after lumpectomy was TN. Both biopsy and lumpectomy were retested. I am now "officially" TN but weakly positive. Huh?? I'm going to be 48 next week and the last year of my periods have been very off - I figured that hormonally I was in pre-menopause. Who knows, maybe the out of whack hormones started all this. (Although I was a junk food junkie too - not anymore!)
My Oncotype came back high though so it's AC-T dose dense for me starting next week. Mugascan on Friday to make sure I can handle it (thats a scary thought). Then it will be radiation. And then they think I should do the Tamoxifen since I'm weakly positive. Never thought when I was first diagnosed at Stage 1 with no nodes that I'd be doing chemo!!
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I had pain prior to the appearance of the lump. It was sharp, shooting pain which was really intense for 3 days and then decreased but w/in 2 weeks I felt something but it disappeared with my cycle. It was back and obviously a lump by the time I got my mammogram w/in 3 weeks.
I didn't have any change in status. I was triple negative at time of removal (via MX). oh well.
I agree with placing something cold (ice/icepack) in your hands/on your feet during Taxotere/Taxol infusions seems to help.
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- kittycat
- no flacseed oil were you told why ? i was told it was good for the heart?
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kittycat an pam
were you told why no flaxseed oil or soy?
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I too had pain (throbbing) mainly in my left armpit but also the outside of the left breast. The really weird thing is that my cancer was in the right breast!!! The last time I remember having that throbbing pain was just before being wheeled in for my lumpectomy!
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I believe the reason for no soy or flaxseed is the estrogen in both. I asked my onc about it because I am lactose intolerate and substitute soy. He said that there isn't enough in what I'm eating and to continue doing what I'm doing.
I know there has been a lot written on this subject and in all honesty I'm not sure where I stand, but for now I am still eating soy yogurt, cheese and edamamme in moderation, but have cut back on the amount I eat.
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I don't eat soy because I don't like the taste. However, I do eat flax seeds every day in a smoothie. Here's a thread where this topic was disccused a while ago:
http://community.breastcancer.org/forum/86/topic/563976?page=1
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My onc indicated that the hormones in Soy are different than human hormones and don't pull the same stuff.
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MUGA scan went much better today. The tech had a clue which made her 10 times better than the one at the cardiologist's office. I called the onco twice today to get a chemo start date. Her nurse finally called me at the end of the day and told me they won't get the results for probably a couple more DAYS!!! WHAT??? This scan was done at the cancer center that my onco belongs to. I don't get it. The cardiologist had it overnight. Now I'm beginning to freak out!!!
What was the length of time you guys had between surgery and chemo? My surgery was May 4th, so I'm about 6 weeks out. This triple negative crap scares me!
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Hello ladies...adding myself to the list.
Diagnosed at 39 on Christmas Eve. Now 40.
I've had a lumpectomy (Jan 09) including axillary dissection, re-excision, portacath went in March 09, then chemo (3 x FEC, 3 x Taxotere...3 weeks apart), then rads x 30 (July-Aug 09) including 5 x booster. Portacath came out about 6 weeks ago now.
I'm now on the other side of treatment, have got 4 inch long wild and curly hair (my pic here is old), and looking forward to getting on with life without recurrence (cross fingers!). Considering having some work done to get more symmetry between my breasts as the sick one is now much smaller and sadder post all that treatment.
Any newbies here have any questions I'm happy to help R xo
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hi Ricki13
Was your one positive node micromet ? How big was your tumor and did you have any DCIS components?
Thanks.
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Hi from New Zealand.
I've been in and out of these forums for the past 18 months (albeit shyly) since finding my lump and I'm part of this club too.
Dx Dec 23 2008 (funny how the date sticks) 40years old x2 boys 10yrs, 5yrs - WLE Jan 09 then chemo (x3 FEC x3 taxotere) then 25 RADS. TN 1.5cm Grade 3 0/7 nodes
Like you Ricki13 I have wild curly hair resembling a sheep...BAAA......I did have relatively curly LONG hair before but never like this. I should be shorn and knitted into a jersey! I am having probs with my surgery side as have major lymphodema in my L breast from radiation damage-it's huge.
On Beatrice trial but doing the contol so no avistan for me just regular and thorough checks. I'm starting not to think about it all the time but it is always in the back of my mind-all it takes is seeing a 'scarfy' at the supermarket and then I remember the past 18 months.
Yuck xxx PS Anyone heard of rugby and the ALL Blacks?
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Hello all...interesting to read all your experiences...thanks so much for sharing.
I am married (18 happy years) with two boys 9 and 11.
I was diagnosed Oct 2009 at age 41. I was undergoing a physical - mammos and ultrasounds had come back clear. Blood work showed elevated h-scrp which doc suspected heart disease. He did a heart scan - which came back clear - but showed enlarged node in right axilla. Turns out that blood marker is also a cancer marker. No palpable breast mass, and more mammo, us, and mri still showed nothing in breasts. Biopsy of axilla showed adenocarcinoma, likely of breast origin.
Axillary node dissection Dec 09 - 9/29 nodes positive .
CTs showed several enlarged nodes throughout - including both right and left clavicle, liver and groin. Biopsy showed lymphovascular invasion, extranodal extension. Staged at 3c. Still no evidence of primary - called "occult primary". Therefore can't diagnose as IDC or ILC nor can they officially grade it. Has gone to tumor board to determine treatment plan as am told this is "very rare"..."grey area"..."highly unusual"...bla bla bla...if I've got those odds...hello...lottery?
BRCA negative, no known family history.
Began chemo Jan 2010 - 3 FEC and 3 Taxotere was original plan - but severe GI side effects from FEC landed me in hospital after 2nd - so switched to EC only for third. Then 12 weekly taxol which has been easier on my GI tract (I have previous Ulcerative Colitis - and have no bowel - but have a JPouch so chemo did a number on me). I am almost done taxol - 2 more go go and hasn't been too too bad - neuropathy biggest issue - doc just lowered dose to 80% last week which has helped.
Struggled with mast decision - current plan (although I change my mind almost daily!) is unimast in August , followed by 35 rads.
Then...hopefully diep reconstruction next spring!
I have lurked on these boards since m diagnosis and has been very helpful...just starting to post in the last few weeks...
oh...and my hair is growing back - yucky grey, black baby hair...but at least its growing back!
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Kittykat, I was diagnosed in March, had surgery in April and didn't start my chemo until June 2. The waiting def sucks. I was a nervous wreck and just wanted to get it started.
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Welcome Pamdo, sorry to hear about all you are going through. I hope it all works out for you. Stay connected on these boards, they are a lifesaver!!
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Welcome, Pamdo and chicknz.
Kittycat, I had surgery and started chemo withing 3-4 weeks. I don't remember exactly. They wanted me to be healed from the surgery since chemo can make healing difficult. During the wait, I had all sorts of test and scans. That sort of helped the time pass.
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Pamdo - so glad to see you on this thread! These ladies are wonderful and you'll get a lot of support here.
Kittycat - my surgery was on Sept. 25th and I started chemo on Dec 7th so don't worry, you're still well within the "window" for chemo to be effective. There was such a lag because I had an addtional surgery to my lymph nodes in between and couldn't move on to treatment until the results of that surgery became known.
Sherri
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Kittycat - my lump found August, surgery December, and chemo January....because was occult they needed to do extensive testing....I too was worried was too long, so I understand how you're feeling!
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Kittycat: I had Lx Oct. 15, ALND Nov. 14, then chemo started Dec. 8. Studies have shown that beginning chemo after a 12-week window can have adverse consequences; as I recall there was no significant differences in outcomes in the 3, 6 or 9-week windows (I was obsessed about this for a while.)0
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Pamdo - I just realized we were diagnosed the same day!
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dx June
bmx July
chemo September
recon March
recurrence March
chemo May
Just hang in there Kittycat...... try not to worry too much and laugh often. Onc said no soy due to it mimicking estrogen and possibly making me produce MORE estrogen. He believes TN grows from hormones as well.....
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Okay I got my MUGA scan results today. I am above normal, so I start chemo tomorrow - one day prior to my cancerversary from last year! I am just glad to get this show on the road. No more waiting!!!
pamdo - if you have any questions about reconstruction, feel free to pm me. I went through it last year. I had a bilateral and tissue expanders. It wasn't "fun" but I am happy with the results. I will have to wait until this treatment crap is done and I might ask my PS for a fat graft or something to fix where they took more tissue and capsule area this year. I look okay in bras, so that's all that matters!!!
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