TRIPLE POSITIVE GROUP
Comments
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Tonlee, what specialk said!
Pbrain, I laughed out loud at your comment -- "it will be like I'm alone, in a room, with my two boobs wondering if they are trying to kill me." Hilarious!
I'm pretty much just worried that right boob is trying to kill me. Left boob really has never given me any cause for alarm.
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A few weeks ago I posted my situation and have now received a second opinion and am a bit more conflicted. When my biopsy was tested with IHC her 2 positive ...3. My tumor was tested with FISH came back Her2 negative (1.1). MO is comfortable with the findings of the fISH. Mammaprint was ordered and my MO said the results will tell us if chemo is recommended. I was Ok when I left the appt. Everything I read is FISH is the final test. I had a second opinion with MO and he told me he would not ignore the IHC result and he would of ordered the oncotype not the mammaprint/symphony because mammaprint will not tell me if it is positive for Her2. The oncotype retests for Her2. He recommended retesting with IHC to check if it was a false positive. He was not sure if he could get tumor sample to test at their facility but would check. He would also call 1st MO. If there is any chance herceptin is a benefit for me he wants to find it. Now I have no grips with skipping a treatment if not needed but I do not want to miss out on something that may benefit me in the long run. I was dx at age 43. Turned 44 a month later. They were watching something since Jan 2012 as I had mammogram and US ever 6 months til dx. No family history. I meet with 1st MO on Wednesday and should have mammaprint results.
Also found out Monday my husband's niece, 29 yrs old, was dx with breast cancer. She has a strong family history. So I think at this time I still support "early" screening. Agree we need to make some noise about research on metastatic cancer.0 -
@Eklatho--there are at least 2 of us here in same situation with conflicting HER2 results and waiting for oncotype/mammaprint results. My MO strongly recommends Herceptin even though test results contraindicate as he says it helps some women and oncologists can't yet determine which 1 woman of 20 treated will be helped. He admits this means MOs are overtreating most women. 2nd opinion MO from our major medical center contends Herception/chemo absolutely not warranted and will subject me to significant risks with no calculated benefit. I did a cancer math calculation @ www.lifemath.net ...my estimated added life span if I do chemo (in addition to the rads and hormone therapy I will do) is 3 months. Statistically insignificant. Another calculator is www.predict.nhs from the UK. Same insignificant impact on recurrence chances. Anyway, am waiting for my oncotype results to either confirm what I hope to do, or turn everything upside down for more decision-making. I am told that some insurers won't cover Herceptin if the HER2+ results aren't clearly positive. Here's hoping you get the news you want.
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navymom, geez, I took a look at that lifemath.net and it has a 32% chance of me dying of cancer in the next 15 years, and the risk keeps going up as time passes. I thought that it was most risky the first few years, but if it didn't recur within 5, it was less likely to recur at all.
Ok now THAT is alarming.
I like the nih one better!
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That's depressing. :-(
I'm not going to follow the link.
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Lee,
good idea
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I'm trying to remain positive, despite needing to have both tissue expanders replaced and then refilled to capacity before starting radiation.
Crappy statistics have no place in my current paradigm.
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Love your new picture Lee!
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cypher are you sure you are reading it correctly on lifemath.net? Also it might mean that in 10 years 30 women died, 15 years 32 women passed… but that's total for the years. It doesn't mean 32 more women died 15 years later, it means 2 more died. So although the numbers keep going up that doesn't mean in the time between 10/15 years it means in total.
I don't know your stats either but if your tumor is larger than 5cm or you had a lot of nodes there is a disclaimer on the bottom that says the tool was not tested for those cases and may not be accurate. Since my tumor was above 5cm the tool supposedly isn't accurate for me. Go by what your onc told you.
Lee I did your stats (guessed your age at 45 and that you will be on Tamoxifen). I won't tell you what they are but your stats are better than mine (I may have had no nodes but the really big tumor pushes the numbers) and I think mine are pretty damn good. We are both the same stage
If you do use lifemath.net change the graph to show survival not mortality. It's much more positive to look at.
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Lee....
Cheer up....You look beautiful and there is enormous progress in research, testing and treatment.IMHO It's our job to lobby for the enormous good will and funding toward the cause of breast cancer be directed to worthwhile areas.
You just take care of yourself and muster your strength toward finishing treatments!0 -
Good morning, ladies.
lago, I am 54 (I'm older than you are) and had a .5 micromet in one sentinel node. The other sentinel node was clear and so was a palpable node removed from my axilla. The .5 micromet did not show up in the pathology done at the time of surgery but did show up after the fact - in the H & E staining post-surgery.
Two of my pathology reports showed NO lymphvascular invasion and the one from the radiation oncologist's pathologist (a third opinion) shows "possible focal lymphvascular invasion." Go figure.
The radiation oncologist thinks that with radiation, my chances of a LRR recurrence are 3%. Without radiation, 15%.
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Lee I had a feeling you might be older. You southern CA gals all look younger. I think it's a requirement to live in CA.
I did it again with the correct age and you are still doing 2 points higher statistically than me. I did mine at age of diagnosis which was 49. I also didn't do radiation. Granted I would think by now with my super fast growing tumor, if I was going to have local recurrence it would have happened by now. This August 31st makes 3 years NED!
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Thanks for the Congrats everyone. I am enjoying the job
Lee,
Great pic!
I was in a "similar" situation after chemo. I busted open mx incision at the beginning of chemo, so had an open wound the whole time. It wouldn't heal on chemo.
So after chemo I had to have a revision, wait for THAT to heal, and then start expansions.
I want to warn you ahead of time, there isn't much data on the length of time you should wait between chemo and rads. I wanted 12 weeks, just 3 months to heal and be filled. Got 2nd and 3rd opinions who told me it could be "risky."
I had to really fight, downright say, look, this is how I'm doing it. Take it or leave it. So my RO said, ok, how about we give you 8 weeks, and the last 3 fills, I will just redo your intital session (when some women get tatts, I got stickers)...so that's what we did...I was being filled the first few weeks of rads, and the RO was re-doing that original analysis...very time consuming for him, but he was really worried about my lymphs. (I had more than you.)
My concern for you is that they can't start expansion until you heal from the swap, and they can't start rads until you're done with expansion (ideally). Your looking at a pretty significant time suck there. So be prepared for them to suggest:
1. Since it was minor lymph involvement, waiting is no big deal (YEAH!)
2. Removal with no reconstruction and rads, or leave them as is inflate, or not, and rads.
Of course you can do whatever you want. They're not the boss of you. And frankly, two years ago women in your situation weren't generally getting rads (until the latest study results).
And just so you know, my RO called back women who were LESS THAN a year out for rads once the data on the benefit of rads to axilla came out last year. He had to have some sort of benchmark to determine it would not benefit women who were more than a year out. (Though it doesn't necessarily have to be medical, ie, too traumatic).
Anyway, good luck and please let us know what happens because there will be another triple pos. lady come here in the exact same situation, may even be a lurker in that situation now.
Good luck.
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Hi everyone
I haven't been here in a while
Best of luck to everyone. Just had my 4th treatment last Monday and I'm the usual no appetite for 3 days till next week. The only thing keeping me going is knowing I have 2 more chemos. I finish in June then rads.
This was easier, but definitely more facial lines.
Hope all is well0 -
I haven't chimed in to this thread in a while either, but I do lurk
. I do like your new picture, LeeA. Very grateful for all of the great information you ladies share on here. But I don't think I want to look at that lifemath thingy right now, either. One step at a time! Take care of yourselves!0 -
Lee, I didn’t realize I was going to get crappy stats when I put my info in! I don’t think that calculator fully takes herceptin into effect anyway. You decided on radiation? Oh I see your post there. I’m sorry you have to deal with the tissue expanders etc. : ( I was hoping you were done!
Ok ladies I just redid the thing per Lago’s instructions – I think it was a computer glitch before because this time it gave me different options, and the risk of my dying of cancer within 15 years is about 13%, which is higher than I’d like (I’d like 0% chance) but about what I thought it was. Sorry about the false alarms there!
Lago, I look forward to congratulating you at the end of August!
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cypher glad you redid it. I know in my case they wouldn't guarantee the results because of my tumor size but it was close to what my onc said. Also you are right about the herceptin. Unless they have adjusted the stats I don't believe they have included 10 years stats for early stagers that are using Herceptin. Remember Herceptin was just approved in 2006 for early stage. I believe this calculator was created before that.
I know the stats my onc gave me back in fall of 2010 did not include stats with or without Herceptin.
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I'm avoiding the stat calculator too! Happy Sunday everyone!
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I've been following the very active twitter feed from the #ASBrS conference in Chicago thx to the dedication of Drs Attai and Radford . Twitter certainly has real limitations but it appears that lots of new info is emerging. Seems that vaccines may be most useful at this time in preventing recurrence.
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Hi ladies...FYI.....changed my screen name to ChickaD......affectionately given to me on other boards......♥ Same photo for now!
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OMG help. I'm having such a hard time remembering everyone's screen name, real name and for those that I have met in person, last name. I'm so bad with names and telephone numbers
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Lago.......I was kind of worried about using my real name and I've heard many people suggest using something different .....so I thought that was a good idea but ide like to keep my photo for now until I find a cute little chickadee on the Internet as my avatar
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lago, re: my photo - it's the wig. Without it, I see the face of my grandfather staring back at me from the mirror.
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Tonlee, first off, congratulations on the new career. It sounds very exciting!
Re: the radiation/expanders - the plan right now is to remove both expanders and have them refilled (the left one has developed a leak - the right one is expanded quite a bit but the new plastic surgeon is a perfectionist and he's not happy overall with the other plastic surgeon's efforts to date. I've seen photos of my new plastic surgeon's reconstructions and I'm very impressed. Even his tissue expander work look beautiful.
He and the radiation oncologist have worked together before and they've already been in contact regarding my situation. She is very patient and seems to think that being on Herceptin is key here. Plus, as two radiation oncologists have told me - I'm in a gray area so she doesn't feel the urgency as much in my case. Her own mother had a triple negative tumor 20+ years ago and then recurred in the scar bed with a hormone receptor negative, Her2/neu positive tumor since then. She is very confident in Herceptin and feels like that provides a good BandAid(tm) during the wait time. The plastic surgeon thinks he can get me filled back up to maximum pretty quickly.
I had one .5 micromet in one sentinel node (one clear sentinel node and a clear node from the axilla) but the radiation oncologist's pathology report shows "possible focal lymphovascular invasion." It's amazing how these pathologist's reports can differ so much. The report from the Disney Cancer Center/Providence Hospital (Burbank) shows NO evidence of lymphovascular invasion. That pathologist was part of the group of doctors that developed the Oncotype testing program so I have quite a bit of confidence in him. The pathology report from the hospital where the mastectomy was performed also shows "no evidence of lymphovascular invasion" but the radiation oncologist also has a report from somewhere (i.e. from the time of the mastectomy) in her binder that ALSO shows evidence of lymphovascular invasion. I think I'm going to email her assistant and ask for a copy of that report because the fact that there's some report floating around out there that I haven't seen is weighing on my OCD mind
. I was really hoping that I could go straight to implants prior to the radiation but the new plastic surgeon thinks the left side isn't expanded enough so more surgery it will (presumably) be.
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I agree with not using your real name. I made sure mine wasn't searcheable. Actually it is searcheable but brings you to restaurants, places etc. Not this site. Took me a while to post real photos in my avatar but at this point I'm out. I mean I've been on the local news, radio and spoke at the Chicago Strides Walk for the ACS.
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Lee,
Could one report be from surgery (they usually look at it right at that time) and the other from the lab after it was sent off?
I dunno, but it sounds like you got it worked out! Hang in there....
Lago,
I know right? I watched you on tv! Little late for keeping on the down low...lol
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Lee....you are GORGEOUS my friend!
Any other advice on privacy...I kinda like the photos...I feel I know each of you better....some ladies have posted that our public info sometime gets out on social media???0 -
ChickaD, thanks but if I posted a photo without my wig and no makeup - well, you wouldn't believe the difference. At this point I look more like an alien than a human and no, I'm not joking. I never realized that it was the eyebrows that separate us from the extraterrestrials.
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TonLee - I'm not sure about that report but I'm going to find out. It's trapped in her binder but they're going to have to release it from bondage and send me a .pdf of it or something.
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Re: online privacy - I'm so paranoid about it that it's kind of ridiculous but now, since being diagnosed with breast cancer, I've taken on a bit more of a what the heck attitude; however, I joined a January chemotherapy group on Facebook and I use a psuedonym because my creepy college boyfriend tracked me down on my real name account and I deleted it. Note: at 54 years old I was hoping I'd be exempt from his searches (this is the second time he's tracked me down - the first time was over ten years ago on classmates.com).
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Tonlee...congrats on the job. I spent the first ten years of my career at a bank in community affairs, giving money away, and sponsorships. Then changed it up a little when I had kids and did marketing for a local builder/developer, then hit the non profit side, in development. Ran the membership program, did some pr and marketing. Sold sponsorships.
I was part of the team that worked to bring the NCAA to Indianapolis, and virtually all my career was helping to grow our city using amateur sports as the catalyst. All my jobs were great. While not as noble a cause as yours, it is always good when you feel passion for what you do.
I chuckled just a little when you said you went to strip clubs. I immediately thought that perhaps you went in with your new girls on display. Lol
Pbrain, the single reason I go to my oncologists yoga class twice a week is to keep the connection. Like you, I wake up wondering what is going on onside that I don't know about. I hate that. There is some study out there about moving on. You don't have to go anywhere. It is all done online. I am thinking about doing it.
Ashla, keep us up to date! The vaccine trial that SpecialK and I are in is moving into phase 3 according to my coordinator. She said they will begin to give the vaccine to people who are just starting herceptin in the next phase, instead of waiting until they are finished with treatment. I'm hoping that is because they have such great results they think this will be better, and not that post treatment vaccination isn't as effective.
On the lifemath test, I just typed in the numbers. I don't have flash player on the iPad, so I only got a small box that said I have a 7% chance of recurrence, and that my lifespan is shortened by 1.5 years, from 26.5 to 25. Since I want to live to 100, if my mental faculties are good, that will leave me a little short. Hope that vaccine works!0 -
Hey Fluff...may I ask what trial you are in? I will being starting treatment most likely at end of May.....just healing from BMX
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Fluff,
I'm reluctant to pass on the snippets of info these wonderful MDs were kind enough to pass on to their followers for fear of misrepresenting. The words I used re the vaccine were almost verbatim from tweet.
If any of you are on twitter if you follow Dr Deanna Attai you can see all her tweets. Tonight she will be a participant in a weekly twitter forum so she may have more to relate about the conference.
One thing I can say that came across clearly.....exercise, exercise, exercise. Nothing was tweeted about exercise DURING active treatment but the benefits of regular exercise both aerobic and weight bearing seem clear. The benefits appear to be both psychological and with regard to recurrence. 150 minutes per week! That's the MINIMUM!0
