TRIPLE POSITIVE GROUP
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SOLTANTIO---That my point everyone of them can out talk a dr. it's hard to follow LOL They are all so smart.
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I had ALND and 1 positive node was found, I am going to request my path report next week when I have a reduction surgery appointment. I did have rads following a lumpectomy, but the axilla was not treated. Wondering why this was the case when 1 node was cancerous.
Other women who were being treated with rads at the same time had axilla rads. They had mx and one lady had a palpable lump in her armpit. Perhaps there is a cut off here in the UK for rads dependent on disease severity.
Last night a friend (age 40) rang to say that she has been fast tracked on suspicion of BC. She has a tethering on her breast and the doctor could feel a node in her armpit. Crap...
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Jackboo, thanks for the explanation of what those margins mean. Makes sense, im just worried now that I should have had rads but it wasn't presented as an option to me. Like TonLee & kayb say, what's done is done at this point. Ill just hope for the best. Sorry to hear about your friend.
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shore - if your margins after MX were good (margins after biopsy mean nothing since you had an MX), combined with you being node negative, you didn't need rads! As others have said, move away from the path report! LOL
I understand, I'm a worrier, too - but it sounds to me like the right decision was made.
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Wow, missed some great discussions yesterday, had #3 tx. I am wondering if I need to be wearing a sleeve. I just started back to Pilates 9 weeks post BMX/Free Tram. I was node negative but 7 nodes removed on right side and won't have rads. Should I be wearing a sleeve for Pilates, doing my little weights at home or when I eventually fly again to avoid LE. Not one of my doctors have ever mentioned it not BS, PS or MO!! I really hope I haven't already caused an issue with my exercise!!
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swimmom - the sleeve issue when you don't have LE but are at risk is controversial. Different therapists give different recommendations. I've seen many women on here who have had it recommended, and many others who haven't. My LE specialist (a friend of mine) told me she does not believe in sleeves for prevention, at least for me with only 3 nodes taken. I wonder, though, if that recommendation might change with more nodes taken. I don't believe they have hard science to show whether it is worth it or not. It is definitely indicated once LE develops.
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SK,
Yeah I think you'd get a rads recommend today. This study was specifically for women in your situation. For women who have positive nodes, an axilla dissection and traditionally (if only 1-3 positive nodes) wasn't always getting a rads recommend (mainly because there was no real research out on it yet.) Now the research is clear and the benefit is fairly significant, if you put faith in statistics. lol (30% reduction in recurrence/mets if I remember right...it's all in the link)....
I can't remember if you're retired AF like us or not, but if you would have been txed at a military facility, AF, there would have been no question about rads with 2 positive nodes. They were doing rads to the axilla for positive nodes years before the studies came out according to my RO. Seems it is DOD wide.
Jack,
Your tx may have been decided before the study in June 2011 was made public....
Solt,
RNI = Regional nodal irradiation. Since you didn't have positive nodes, the last two links I posted don't apply to you. So STOP WORRYING!
If LVI was present, your path report will state it. Do you have a copy?
The only reason I brought this up, and do it again and again, is not to make you worry....but because in the last two years radiation guidelines for breast cancer have changed so much. RO said it's the largest practice changing data for BC rads in decades (aside from technology advances).
Since a lot of women here were treated under the old guidelines, our tx isn't the standard anymore, and when we talk about getting a rads "pass" it confuses some of the newer women who can't understand why they have LESS positive nodes/smaller tumors and are getting it, second, even third opinions all recommending it.
It helps when we mention "this was under the old guidelines" but we often just forget or assume people are as familiar with our stats as we are...lol.
I don't generally couch my words in palatable bites. It's a character flaw. So please, research, talk to your doc, and try not to worry. Despite some views on this site about current medical care, my experience (as frustrating as it's been in some ways) is that most docs want to cure us, want us to have the best fighting chance possible.
Hope that helps.
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Dance,
That is my experience as well. I was told a sleeve "might" cause LE, especially when flying. I've flown a bunch of times since the MX, and no problem. But I only had 4 SNs removed. My arm feels weird sometimes, heavy....I think the lymph fluid drains slower now.....but I've had pretty bad cuts and right now a big burn on my MX arm, and so far....well....I don't want to jinx it!
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My cat attacked my arm the other day (she is lucky we keep her). I now have 4 or 5 scratches/bite marks, 2 that drew blood. I had a meltdown when she did this - first real cuts on my at risk arm and from a nasty cat mouth/claws to boot. Immediately washed the area with soap and water and applied antibacterial cream. Hopefully it will heal up without incidence...and that cat is getting NOWHERE near my lap EVER again. Man am I p*ssed at her, still.
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Bad cat.
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Did anyone watch GMA this morning? Robin Roberts last day before medical leave. I love her. They had Martina McBride on singing a real tear jerker.
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I'm watching it right now - central time. Expecting some tears!!!
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I watched it and am so impressed with her. I have mixed feelings about the whole thing, though. I hope I can find the right words. Robin is an absolutely incredible woman with a tremendous support system - yet she is the one being strong for everyone else. It seemed more of a goodbye than I would have liked to have seen. I saw so many of her team giving her that "look" that we all dread. We have our plan, we're executing it! We're marching forward with faith and as much positivity we can muster and everyone standing around crying just doesn't help. I'm sure we have all experienced this on our own worlds. It makes me want to hibernate. Almost half the people act like we're dying, the other half act like this is no big deal and everyone these days beats breast cancer. Few people truly get it...that's why we are here so much. Just my opinion, of course. Which may change in five minutes.
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Teresa, I just now saw it. I totally felt the same way - she had to be strong for everyone else. Again, I will say, I can't imagine being a public figure going through this. I honestly don't know how she held it together through that program.
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tonlee - yes, we are retired Air Force. The medical facility at MacDill is a clinic - no inpatient or even an ER available. My mammo/US, echocardiograms and bone density are done there because they have those capabilities and will not pay out for insurance if they can do the test or exam. My Tricare referrals are handled through them, but my care all comes from civilians. My BS came from the only NCI designated cancer center in FL and my MO is part of the largest private cancer treatment group in the state with numerous locations. What is interesting is that I brought this up twice with both docs and both stated that rads were not necessary. I had concerns because of what I had read here, and saw others who were receiving rads while I was still in chemo and would have had time to arrange it still. I had discussed rads with the BS previously because the original plan for me was a lumpectomy until I changed my mind and elected BMX.
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Shore there is a reason why onc/rad onc doesn't want to over treat. All of these tx have SE. Some quite serious. It's not common but you can get cancer from rads. It can also do damage to bones or any organ in it's path granted they try to avoid. To be honest I was glad it was recommended I didn't get rads and my margins, although clear were close. Remember us triple positives are aggressively treated. I think rads would have been overkill based on what you have told us and my non medical opinion
swimmonm I know a gal who had 8 nodes removed (1 positive) got rads and has no LE. She doesn't even wear one for flying on short trips. In my case I do feel heaviness at times in the unaffected 4 node arm (noticed once when I flew without the sleeeve) and we know I am susceptible since I have it in the other arm with only 10 nodes and no rads AND my mom has it in her legs. This is why I wear for flying and strength training.
My advice as a non LE specialist, is to read up on LE and do some of the prevention it suggests. If you feel heaviness at any time stop what you are doing and in the future consider getting a sleeve for that limp when working out.
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BTW I'm so excited I've raised almost $1400 for the ACS strides against breast cancer so far! My team (including me) has raised a total of $3130 and the walk isn't till October 20th! I'm tring to raise $2000 by tomorrow, my 2 year NED date.
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Nice work lago!0
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great work lago!
shore1 -second lagos comment on the damage that rads can do. There is a risk/benefit to any treatment. In your case the risk was most likely greater than then benefit. I question if I should have skipped them so we are all in the same boat on questioning treatment/decisions. I know when i first came on the boards i felt like i was the only one who had a lumpectomy with her2. I felt like the doctors were not treating me as aggressively as others here. But i did get 3 opinions at different hospitals and all said it was fine to wait until i completed treatment or if i wanted to stay with the lump it was perfectly fine to do so. We want to do everything possible to prevent a reccurance by educating ourselves on the latest treatments/protocols and its hard not to look at other experiences and relate them to ours. Sometimes i wish i was a little more in the dark about things!
sol i had my tissue tested twice - first time my path report indicated "suspicious for LVI" second time "LVI present" one was done here in canada the other in the US
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BTW rozem my BS would have recommended lump if my tumor was smaller and my other breast was clear.0
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thanks lago i really have been struggling with that for 6 months while i wait for this damn surgery! and it doesn't help when i read comments like "i wanted to be as aggressive as possible so i had a msx" makes me feel like i wasn't aggressive enough
jackaboo from discussions with my RO when they radiate the breast after a lumpectomy they also get some of the axilla aswell because it is part of the "breast" - i believe level one nodes and sometimes part of level 2 so most likely you did have a portion of your axilla radiated
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rozem - My BS was prepared for lumpectomy too and we were certainly aware that I was Her2+. It was totally my call on the BMX.
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Hi ladies,
I am days behind here, but with regards to the conversation days ago about triple positive and grade...my onc actually retested me just to be sure...but I did come back as grade 2, and very highly er, pr and her2 +. One of the initial fine needle aspirations actually showed er/pr -, grade 3. When the surgical pathology was contradictory, they retested and got the same results as the path...triple pos.
Welcome to the newly diagnosed!0 -
Geewhiz,, I too am triple positive with Grade 2, there are a couple of us..
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Lago - great work on the fundraising!
This just came into my inbox. The trial data on using Acetyl-l-carnitine to prevent neuropathy is back - and the results are not what I expected. It says ALC may actually make neuropathy worse when given for prevention...
"Based on these data, physicians should be telling patients not to take ALC during adjuvant chemotherapy," Dr. Hershman concluded. "You need to talk to patients. We know from the literature that overwhelmingly large number of patients take supplements during chemotherapy and afterward, many of which have not been tested. It's important to get that history from patients."
WOW. I am stunned! I took ALC. Guess I'm just lucky I didn't get neuropathy. Or maybe it was the B6 I took. Who knows. Glad they are doing studies on this, though, for future patients.
Acetyl-l-Carnitine Yields Mixed Results for Chemo-Induced Neuropathy
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SK,
Your docs likely made their decision not to do rads on something other than the latest study. Have you asked them about rads since the standard changed? If so, did they mention how they came to that decision when the literature is so clear about the benefits of receiving rads with positive nodes? (Enquiring minds want to know!
And if you've already told us here, I'm sorry....I forgot.)Ultimately though, it is their professional prerogative, and if you trust them, then it is all good.
They're called "guidelines" and not LAWS for a reason...lol. It allows docs to tx the individual's cancer, and not tx to a generic standard.
Roze, my surgeon's personal preference is almost always for lumpectomy. The only thing I can honestly say I'd do different is the MX. I elaborated on this earlier, but a lumpectomy would have served me just as well...even though they found more cancer that didn't show up on an MRI and ultrasound...I think chemo and rads woulda taken care of it...
You're right...we often equate MX as "more aggressive" in fighting cancer, but it isn't.
It's just more INVASIVE.
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Hi Dance and all my other bc friends
I have been trying to catch up on all the posts to no avail. but just read yours about the cat bite. My "pyscho" 11 yr old cat bit me on my calf about one week before my mastectomy. I wasn't even going to bring it up to my PS before the surgery, but figured I should, when he asked if I had any cuts, scrapes etc.. I showed him and he nearly had a fit!!! He had me see an Infectious Disease specialist asap. I was put on an antiobiotic and advised to take her to the nearest farm and drop her off. I am serious that is exactly what he said!! I am an animal lover so of course I couldnt do that, but let me tell you....she is very close to by by time!! She just did it again the other day... Keep an eye on it Dance and watch for redness and hot to the touch. Your bites sound superficial so what your doing sounds fine, Mine on the other hand was pretty deep "that time" and since have had at least 1/2 dozen more bites to my calf. Damn Cat!!! I am waiting for her health to decline, but she is healthy as a horse. Anyone want an 11 yr old, declawed, black, (psycho) cat? Just had another 3 month ck up. All is good,(hopefully). Had the usual ...vitals....bw....discussion....physical exam and out the door. Back in another 3 months. Still no scans...which btw congrats fluff on your normal pet scan!!
He said I could get one done if it would ease my mind, which I am thinking about, but I doubt my insurance will cover it. I will have to come up with a symptom.. I did ask him about reoccurance for me and where it would mostly appear..(if it did... of course) He said most likely the "bones"..... so I asked him how can you tell the difference between the multiple aches and pains I have each day to a "met"pain. His answer...'it will feel different, more intense and will not subside with OTC meds. So.... I guess I will go with that... but wasn't happy with that answer
Any takers on the cat? LOL!!!
Oh, and I do have ostopenia in my lumbosacral spine, showed up on my bone density. I have had low back pain for years...I used to be able to do back bends like crazy.. now ... can barely bend backwards... Time to bump up on my bone strengthening exercises.
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I am highly er /pr positive. (100%er and 97%pr) and grade 2 too.
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I'm highly er/pr positive too, 90% er and 80% PR and grade 2 also.
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tonlee - I did not specifically ask about why no rads in the face of the guideline change. At the time I asked about whether I needed rads I was knee-deep in treatment and willing to take the no answer with a grain of relief at not having to do it. My "impression" was that the no rads was because I had a more aggressive than necessary surgery, then axillary clearance. I do trust my surgeon - he is a great combination of years of experience in surgical breast oncology specifically and cutting edge technology and technique. He was one of the pioneers of SNB and also, maintains a 25 year database with information on every single patient he has ever treated - he actually has a full-time employee who maintains it. That is another reason I trust his decision - he tracks how his patients have done with differing treatment regimens. I talked less about rads with my MO, but he is who I will see next and I plan to ask about this, if nothing else - to settle the question in my mind once and for all. I don't see the BS until May. I will let you know what his take is on the whole thing - and also what they are currently recommending.
On the Acetyl L-Carnitine - they gave those patients a pretty stiff dose - maybe too much? I seem to remember tonlee posting that the nutrition person she was talking with said only a smallish amount could be taken up by the body per day. Also it seems to be a pretty small study. I took it in a cocktail of sorts with L-Glutamine and B-6, so I may have derived benefit from the other components. I had very mild neuropathy that resolved but can't say whether or not the supps helped or I would have had resolution anyway.
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