TRIPLE POSITIVE GROUP
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Lago I did want to ask about staging and only the parts invasive...for staging ...Clinical stage is not based on that...Anyone got site on how they get staging based just on invasive part?
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goutlaw You need to focus on that 70% NED (no evidence of disease) in 10 years instead of the 30%. There are 70 women out of 100 your age in that category why wouldn't be you. The chemo you are getting is a little more aggressive than what I got (didn't do Adrymicin and only 6tx). There is no reason to think you are going to be that 30%. Don't assume something bad will happen when there is a 70% chance it won't.
The MRI showed my tumor as being 7cm. It was only 6.5cm and only 5.5cm was invasive. They base it on the invasive part only. So for all you know your tumor might be smaller. That's the only problem with the clinical path is you don't know for sure but really doesn't matter. You'd get the same treatment if you were stage II with HER2+.
Are you near Philidelphia? U of Penn is a top cancer treatment center. You could get a 2nd opinion there.
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Goutlaw...
Here is just one of many, many hopeful scientific articles that we have discussed in this forum.
http://www.sciencedaily.com/releases/2012/09/120914135327.htm0 -
Goutlaw, tell your doc to F off! I'm 33 with a big tumor (4.5 cm) and I am getting the works (A/C *4 Taxol *12, rads, 10 years of Tamoxifen, I'm even in the trial of Herceptin for Her2 "low" patients) but no one has ever told me my prognosis is bad! I had micromets to my sentinel node and since I was hormone positive her2 negative we did the oncotype just for curiosities sake even though I knew I was going to do the works. Came back 23 which is not so bad for my fast growing aggressive young tumor. That's a 15% recurrence rate if I only did surgery and tamoxifen for 5 years. I am praying that choosing chemo, this Herceptin trial, rads, 10 years of tamoxifen instead of 5 will put me nicely under 10% chance of recurrence, which I will take! Btw, I know a girl diagnosed at stage 3 at 32, she is 39 now and doing great, pregnant with first baby!!
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Goutlaw Also note that HER2+ tumors tend to be Grade 3, bigger and in the nodes because they grow so fast. My BS was really surprised I didn't have it in the nodes with such a big tumor. So I'm one of the anomalies.
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Jenna, you go girl!
lago, the more I know, the more I think we are all anomalies. I had a 4.5 mm macromet in my node that didn't show up on any of the scans, including the MRI. My tumor was 'only' 1.7 cm. My BS has told me repeatedly that nothing about my case has been normal.
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About 1 hour and 30 minutes from Philly. Live in Lehighton
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Jenna...Yea I thought you only can get tamoifan for 5? How is yours aggressive if you her negative
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Lago thxs for info. Gonna look into it
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OK guess I got to wait until surgery and see what is up. My doctor said chemo also knocks it out from lymph nodes. Wish I had a node biospy done. But maybe better not to know before I end up with a heart attack besides lol
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Goutlaw, I live over an hour outside of philly, but went to Penn for my surgery. They have some excellent docs there. Dr Czerniecki at Penn is heading up a phase 3 vaccine trial. I would definitely get a second opinion, if not there, somewhere. It doesn't sound you will ever be confident in your current doc.
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Big news..
"Recommendations In women at increased risk of BC age ≥ 35 years, tamoxifen (20 mg per day for 5 years) should be discussed as an option to reduce the risk of estrogen receptor (ER) –positive BC. In postmenopausal women, raloxifene (60 mg per day for 5 years) and exemestane (25 mg per day for 5 years) should also be discussed as options for BC risk reduction. Those at increased BC risk are defined as individuals with a 5-year projected absolute risk of BC ≥ 1.66% (based on the National Cancer Institute BC Risk Assessment Tool or an equivalent measure) or women diagnosed with lobular carcinoma in situ. Use of other selective ER modulators or other aromatase inhibitors to lower BC risk is not recommended outside of a clinical trial. Health care providers are encouraged to discuss the option of chemoprevention among women at increased BC risk. The discussion should include the specific risks and benefits associated with each chemopreventive agent."
http://jco.ascopubs.org/content/early/2013/07/03/JCO.2013.49.3122.abstract0 -
I repeatedly see that many neo adjuvant patients don't know the status of their nodes. If anyone who is awaiting neo treatment is lurking please read this. I had neoadjuvant chemo but my breast surgeon did a sentinel node biopsy PRIOR to chemo. He did it within two weeks of my dx. I had the sentinel node biopsy, he put a clip on the tumor so in case it melted away he would know precisely where to cut and he placed my port at the same time. I could have started chemo even sooner than the 3 weeks I waited.
I knew the status of my biopsy within 2 hours of my mammo. There are choices out there for all our treatments. The first few weeks are the hardest time to clearly research our choices and I consider myself fortunate that my gyno sent me the relatively long 50 miles his way. Worth every minute of the many trips I made.
Goutlaw..there are many choices out there. Ask around. And don't be afraid to change.0 -
Goutlaw, I had a grade 3 tumor, it got a 9/9 for aggressiveness. Not Her2 positive but very fast growing! I'm in PA too... Hershey area.
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I'm happy to report that my EF fears were unfounded. The reading was 55%; previously had been 55% - 60%, but the narrative said no changes since last echocardiogram in April. My MO was very happy with the results, and said I won't have any more echos. I have 3 Herceptins left after today, and he doesn't request echos after treatment finishes. In fact, he said that most people who have ill effects from Herceptin have a problem within the first 3 months. Happy day.
Now I just have to get nervous about my first mammogram since diagnosis, coming up on Monday! My MO said he felt nothing to be concerned about, and he said it's easy to tell surgical and radiation changes from more ominous things on today's digital mammograms.
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vballmom - 1.7 mm or 1.7 cm tumor? Would be very unusual to have a macromet in the node with a 1.7 mm primary tumor - just curious!
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Patin, glad that EF came up. Mine recovered AFTER I was off herceptin for four months. I only got half of the herceptin so I wish i could have finished. Whoo hoo! Finish up only three more. Good luck on your mammo!
Gout, jenna, my daughter now lives in Lebanon. She was in Hershey for a while,but she is now moving back here, after 8 years while her DH went to med school/ PHD program. It's a lovely area.0 -
Moonflwr that's cool! I am getting all of my cancer treatment at Penn State Hershey Medical Center...is that where her hubby did his schooling?
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Yep, first he started med school, then did his PHD, and then finished his MD at Penn, he graduated in May. He's going to be doing his residency here in WI, he just started. He's, are you ready for this? He's doing pathology. LOL. I can always get a second opinion now! LOL.
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Gout, I'm a clinical pathologist and the one thing I do know after years of hanging out with anatomical and surgical pathologists (and listening to their arugments) is that the grading of cancer is subjective. I was grade 3 on my biopsy and grade 2 on my surgical pathology report. That shows you it is the opinion of two different people and I chose to go with grade 2.
So dont despair. I also had a nurse give me the thumbs up sign when I told her I was her2+ I was surprised so I asked her why and she said that makes the disease all the more treatable.Try to hang in there during this rough time. You'll get through.
Here is a link to the study my company is doing. I think it is the phase III one to the trial Fluff and Special K were in.
http://www.clinicaltrials.gov/ct2/show/NCT01570036?term=her2+vaccine&rank=1
Check out ClinicalTrials.gov. It looks like there are a lot of trials going on with the vaccine, even in other cancers. Don't worry if the prinicipal site is far away. They might have a recruiting site close to you.
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Moon, nice credentials! I got an interview at Penn SOM, but didn't get in. They only take the very best so you should be proud!
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Very proud. And not only was it a scholarship, so NO loans, but, he's also a very NICE person. LOL
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Dance - I corrected it. My tumor was 1.7 cm. Thanks for the catch.
Moonflower, I was off Herceptin for three months but they allowed me to go back on. I had to get the loading dose again, though. There are no studies for those of us that have been pulled. My MO says as long as I am tolerating it, I can get the full year worth of doses. He seemed open to do whatever I choose. That used to scare me, but now it's kind of cool.
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OMG I swear all u gals can run a hospital with u'r accumlative (sp) knowledge.I read everything, but I don't say much cuz well u know by now. LOL
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goutlaw The great thing about getting chemo first is you can see if it's working. If it isn't your onc can try a different chemo. In my case I won't know if I had the right chemo… but if I get a recurrance it might be because the chemo I was on wasn't the right one. Granted my guts says I'm cured but they won't say that till I'm about 20-25 years NED.
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Lago....Can you give me the calculator website you use? Is this the same one your doctor used?
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Gout, my thinking is you should concentrate on the fight and worry about the staging/survival later. Breast cancer is almost curable, so calm youself and don't go to the scary places.
You know, it wasn't until after chemo that I remembered that my breast center had called me back for imaging on my left breast for years...I had just forgotten, hunkered down and fought like a girl.
And Cami, you bring a very special gift to the board. I know many people who have great book-learning and don't come near your personality!
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Your right just got to wait and see...Nothing I can do about it but take treatments and surgery.
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goutlaw that site isn't accurate for us big tumor gals. Anything over 5cm has a disclaimer. Granted for me it was similar to what my onc told me but it is not the same calculator. Also it doesn't take herceptin into account. It factors in HER2- but not herceptin. Also you onc is doing it based on all she knows about your health history.
If you still want it I will post it but now that I know your tumor is big like mine its really not worth checking out. I did try it with your stats of 6.5cm with 25 nodes and it gave me 74% for 10 years. I think your oncs 70% is probably more accurate but does a 4% difference really matter? 70% isn't bad
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Yea you can post it. My doctor didn't give me 70% she didn't give me numbers she just said BC of my age and tumor size its bad prognosis. Now if its not the full 6.5 cm invasive they will stage differently I guess who knows. This seems like a guessing game to me since I got chemo first not sure they gonna know how much is invasive.
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