TRIPLE POSITIVE GROUP
Comments
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lsl327 - So happy for you - have a wonderful trip, try to relax and come back ready for treatment!
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I am hopeleswsly behind in reading posts here. Getting ready to bounce...
This article and a few others like it make me really think. Wanted to put it out there and get your feedback.
"We are on a search for truth, but will we ever find it? That summarizes how I feel after reading an article in the New England Journal of Medicine, which once again raises the question of how much screening mammography contributes to the progress we have made in reducing deaths from breast cancer in the United States, and by inference, in other parts of the world.
The research paper-written by Dr. Gilbert Welch and Dr. Archie Bleyer, two highly regarded researchers-concludes that over the past 30+ years, screening mammography has contributed modestly, at best, in the progress we have made in decreasing death rates from breast cancer. In contrast, based on their analyses, the doctors conclude that much of the gains we have seen are due to better treatment. An additional observation is that 31 percent of the women diagnosed and treated for breast cancer in 2008 – that’s more than 70,000 women – were in fact treated unnecessarily, since if left alone or not diagnosed their cancers would never have caused them a problem during their lifetime. In contrast, they say, these women have endured surgery, perhaps radiation and chemotherapy, all of which have serious consequences and in fact did not contribute to their health or their longevity.
This is not the first research that has been done on this very important-and very emotional–topic nor is this the first time that the question of “over diagnosis” and “over treatment” of breast cancer has become part of the national debate over the value of early detection of breast cancer.
As the authors acknowledge, there has been a considerable body of research that has tried to answer the question regarding the value of mammography, and assess the “harms” of screening mammograms (which, for the patient may include repeat examinations such as additional mammograms, ultrasound and MRI, and for some women, breast biopsy in order to determine whether or not a suspicious lesion is in fact cancer). There have also been a number of studies-some of which are included in an online table which accompanies the Welch and Bleyer report-which try to determine how many women were treated for their breast cancer without health benefit............."
http://www.kevinmd.com/blog/2013/01/acs-finding-truth-mammogram-screenings.html
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Bren58 - Like Tonlee I also refused the ALND based on the info coming out of the Z0011 study. I also did not quite fit the profile of the people they included in the study so have "taken a risk" by assuming the data can be extrapolated to more women. My breast surgeon was initially nervous about this but my RO was quite relaxed about my decision and felt it was reasonable.
As Tonlee and others have said, if you choose to extrapolate the info you need to be very confident in your decision. I do not have sleepless nights over that decision and am very comfortable with it. Still very aware though that even with the 2 nodes I had removed there is always a danger of LE developing. On my BS and MO's advice I do not allow BP or bloods in that arm.
At 47yrs I am also one of those women who is forever skinning my knuckles etc. Just did it the other day on my right hand and spent a couple of days panicking about it but I figure that if I had allowed the ALND I would have spent everyday worrying about it instead of just worrying when I get a bite or cut!
regards Jenn
(and Hi to anyone new, and to all the usual people, and to those going through chemo. I have been enjoying a little sanity break away from the boards over the past week or so...)0 -
Has anyone talked with someone who is her+ and did not have chemo?
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Bren,
At the time of my surgery the Zo11 Jenn cited was just coming out and my BS didn't know anything about it.
So all I had to go on was the 11 study, some logical extrapolations, and the "protocol" at my facility. At that time, my center radiated all women with 1 or more positive nodes. They'd been doing it that way for YEARS. They were WAAAAAY ahead of the game (it wasn't actually PROVEN that women with 1 + positive node benefit from rads to the axilla until over a year after I made my decision...though I was told our cancer center had a much higher survival/non-recurrence rate than the civilian counterparts in the area.) Anyway, when the 2011 study results came out, it re-enforced my good decision!
I can't tell you how hard I had to fight for something that is now "standard of care." And they still hold it against me, even though I was right to make the decision I did, and NOW the research backs it up SPECIFICALLY.
Oh well.
Yes, there is risk for LE with rads. The life time risk (depends on which study is cited, my RO cited two but I don't have them) is below 10%, while LE for axilla dissection is over 50% 10 years out. So far so good, though sometimes my arm gets numb, usually wake up and it is numb...and if I eat a lot of sodium it gets really tight. But exercise usually loosens it up.
I did have 4 nodes removed. All 4 positive. But I wouldn't let them take anymore because I knew I was getting rads and that was just over-kill in my opinion. Plus they only needed 4 to stage me. I'm positive there were more positive nodes in there, so is my surgeon, but alas I've never had a scan to say one way or another. Anyway, I thought it was overkill....I mean, ripping them out, and then radiating on top of that?? NOOOOOO.
If my BS would have told me that when he got in there he saw enlarged lymphs (I made him sign paperwork saying he wouldn't take more than 4 SNs) maybe I would have been ok with them taking more.....but he didn't see anything...and that is an absence of gross disease! lol
Maybe you can tell your BS that you only want a SN biopsy...but if he gets in there and can actually see other hot nodes, to go ahead and remove them?
I dunno. It really comes down to what you can live with....
Hope that helps
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Oh, and I forgot to mention that initially I did not "fit" the Z0011 study exactly since my BS only took 1 (one) node at my initial lumpectomy even though 3 showed up in the pre-surgery stuff. I was pretty miffed that she only took the 1 since it did have cancer and if she'd taken all 3 we would have had a better idea of where I stood...
I have since done chemo, a few days of rads (withdrew after 12 days which is another story) and then did a bilateral mastectomy with reconstruction at the end of September. During the MX the BS sighted a node on the cancer side that they thought was enlarged so they took it and sent it off to pathology. It came back as reactive (swollen - probably from rads) but with no sign of it ever having had any cancer cells. Since this node was pretty much the next in line after that initial sentinal node we are now pretty confident that I did fit into the study criteria with only 1 positive node (although it was a macromet).
I didn't panic when they told me about removing the swollen node because I figured it was either clear, or it would show dead cancer from the chemo and small amount of rads, OR if it was positive for active cancer we would have known that the chemo and rads didn't work and we could have thrown a different chemo or more rads at me. Just like all of the women who now do neo-adjuvant treatment!
We get so many choices during this experience. My advice is to do what YOU feel is right after you have educated yourself about the reality of the choices you are offered. Don't just make decisions based out of fear (yours or your doctors) without educating yourself.
Jenn0 -
Ashla,
Personally, I'm grateful for the new 3D mammos because I have super dense breasts and the current 2D mammos didn't catch my cancer, I did by touch. I agree that some woman are being overly treated or misdiagnosed which causes them to feel very insecure and react by "just remove it" or "get this out of my body". I began to feel that way just before surgery so I understand the logic behind it. I'm hoping where I live will get the 3D soon or it will be MRI's for me until they do.0 -
Thanks Jenn and TonLee for your input. It's comforting to know that there are others who have not gone along with everything that they were told they had to do by their docs. I did have a SNB done in 2000 when they did the BMX. It was positive for micromets, but they did not recommend any other tx at that time other than tamoxafin (which I declined and they now agree with). I do have 2 nodes that show up positive on the PET and MRI but everything else was clean. I will have to see if they still show up on the next MRI. I can live with not having the ALND, but I don't think I could live with the constant fear of getting LE from every little papercut or everytime I burn my arm getting something out of the oven. I still do have to talk to more RO's as I have only talked briefly to the one at my local hospital.
I wish all these decisions wern't so maddenly difficult, but I am so grateful for all of you who are willing to give encouragement, advise and share your wisdom and research findings!
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Hello ladies I normally only post in the september 2012 chemo thread but I have some questions about surgery and I am also triple positive so I was hoping you could help...
I am almost done with chemo tomorrow is #14 of 16 so only two weeks to go(Im doing weekly taxol) at first I was routing for a lumpectomy which I could do since my tumor has shrunk to almost nothing (amazes me still since it was 7.9 cm to start) but since I started chemo and have had lots of time to research I am pretty sure I wanna do dbl mastectomy. I have spoken to a PS and he says I am a perfect candidate for skin sparing. Which is what I would want plus nipple sparing if my BS gives me the go ahead... My questions are about alloderm...
Has any of you used alloderm for your reconstruction, wondering if you could share your opinion of it. I am also curious about the tissue expandes... If I am doing a skin sparing why would I need them? Would it be due to rads?
I have another appt with an additional PS thought it would be best to chat with a few first..
Another thing I have been reading is that 3x positive are at a higher rate for local reaccurance... Has any of your MOs or BS told you this?0 -
amy - congrats for coming up on your finish to chemo! I had a skin sparing/nipple sparing BMX with immediate placement of tissue expanders and alloderm slings prior to chemo. I particularly needed alloderm because my pectoral muscles are genetically thin so in order to hold up a heavy implant I needed the additional support. Because the implant has to occupy the void left by the pre-existing breast tissue (in a skin/nip sparing procedure) it will be larger than you think! The purpose of the expander is less to stretch your skin, and more to stretch your pectoral muscle in preparation for the implant. There are some plastic surgeons who will do direct to implant but generally you are more limited in size and my PS felt there is more of a chance with capsular contracture with direct to implant recon. Are you definitely having rads if you do a BMX? You would need to speak to your plastic surgeon and radiation oncologist about how they would want to proceed - some docs want the TE fully expanded prior to rads, some want you to wait on recon until rads is done. Radiated skin generally does not stretch or heal as well, so this is something important to consider.
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I have alloderm and I don't notice it. I'm not sure we should. Creeps me out to think about what it is. Also had tissue expanders. You need them because even with skin sparing, you probably won't have enough for the size you want, so they use them to stretch it and gradually inject them. For example, my expander started out with 240 at bmx, and I was at 425 when I got my implants.
Triple positive does have a higher incidence of recurrence I believe, but all the new drugs are designed to help that. We are most likely to occur within the first five years, but the risk really never is zero due to the estrogen and her2.
Bren has a recurrence after twelve years, I think. I don't believe she had herceptin though.0 -
Wow, this board is fast and I was just here this morning.
SpecialK: Thanks for the Claritin advice but boy I hate to start taking something like Claritin twice a day for another 4 years....and I have no allergy problems or I might consider it. But I'll sure talk to my onc week after next when I ask about the problems with the Arimidex but I am tired of the aches and pains...
LeeA: I picked up the Curamin at our new organic market today and they even give you the book by the doctor who seems to be instrumental in the research. WOW, it has so many benefits from Cancer, Depression and dementia, Digestive Disorders, Diabetes, Heart Disease....I'll try to read the book tonight. They suggest you start with a loading dose and then taper off. I need to make sure it doesn't have any issues with the Arimidex before I start taking it.
But I guess taking this is no different than taking the Claritin since it is something you have to continue to take. Oh well!
LsL: I don't know of anyone who is HER-2 positive who didn't get chemo. I was told that if I wasn't HER-2, I wouldn't have needed chemo. Oh well, at least my onco agreed to only 4 treatments (TCH) versus 6.
Ashla: Thanks for the research information. I can only say that my BC was found at my annual mammo but I do think that treatments might be a bit extensive.
TonLee: I had the SNB (hate to even think back on that barbaric prep) and they were to only take 2 and alas somehow an extra 6 tiny ones managed to come along. Oh well, better safe than sorry I suppose. My RO and MO said LE is only in the breast from Rads but who knows. Both my onc in NV and Florida said that if you are going to get LE, you'll probably get it within the first 2 years and I'm hoping that is right!
Goodness, I've rambled tonight!
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Specialk... Thanks for the quick response! I had two nodes positive so I dont think I will be getting out of rads lol I have an appt with my BS this month and will be discussing my wanting to change my type of surgery. So I will def write down some of the things you brought up and see what she says. I didnt think about stretching the muscle... But the PS I chatted with said the longer you leave in the TE the better looking breast you will have.
If you dont mind my asking did you have fat graphing too? And are you pleased with the outcome?0 -
Fluffqueen... Right! Alloderm is a lil creepy but is amazing at the same time.....
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camillegal, ashla, steiner, Arlene: You know, this thread wouldn't move so quickly if this collection of women weren't so AWESOME!
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Ls, there is someone named AlaskaAngel, something like that, whom I believe just did the herceptin and no chemo. I think bcbarbie also. I looked into it – a number of us did – and concluded that it was too risky to forgo it.
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Arlene, that is good info. I like only 4 and not 6. I would like none, but I am good girl and will take my meds.
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Lsl: I did a bunch of research and there were a lot of studies out there showing that 4 was more beneficial than 6 and I presented this to my onco. Now, I was having problems with the Herceptin and my EF and her comment was "is we can get you back on the Herceptin" then I agree that 4 is ok even though protocol is 6. Well, I was able to resume the Herceptin and she stopped my chemo after 4....NOW having said that, then after H#10, I had to stop! Oh well, my new FL onco doesn't think that is a problem and I can only hope!
We do what we have to do to get through this and in the whole scheme of things there probably isn't a big difference between 4 or 6 treatments on our bodies!
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okay, after reading about ALND and SNB I am confused. I had a sentinel node biopsy with my bmx. 4 nodes removed (not too many). So does that put me at greater/lesser risk for potentially developing LE than if I'd had ALND or some other procedure?
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There are two women I met in our Reach to Recovery Training that had BC 20+ years ago and just developed LE, it can happen any time. There's another lady on these forums that (mostly the LE ones) that is Stage 1, had lumpectomy, only 2 nodes and has LE. So, like BC, I think it's kind of luck of the draw. We do have to be careful about cuts, burns, bug bites, but my experience is that those things don't trigger my LE (and I've cut myself pretty badly a couple of times, plus had carpal tunnel surgery on the LE side), but I had 2 punch biopsies on my MX scar right next to my sternum, and that had my arm, hand and fingers swelling within 1 hour. Never sure what can trigger it or when, remember though only 1/3 or so of us get LE, and the more extensive the treatment the more likely we are to get it. Just use caution, but don't over worry about it. There is even a women that has it on her PMX side on these boards. BC & LE are crazy, unpredictable diseases!
I do think that you all should be assessed by a certified LE therapist though, so you at least have a baseline, know what to do and what to watch out for. Very important thought the the OT/PT... is certified through something like NLN or LANA. You can go to http://www.stepup-speakout.org/ , http://www.lymphedemablog.com/ , or http://www.lymphnet.org/ for more information on LE and help finding a therapist.
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Arlene, I think your right about 4 vs. 6 and what it does to the body. Seems so destructive that I would like to think 4 is better but none is the best but not the cards I was delt. Did you have a reaction or side effects to the Herpcetin? Just curious. Thanks again!
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cypher - Alaska Angel did chemo and no Herceptin - at the time she was treated Herceptin was not given to early stage women. There was a member named evebarry who did Herceptin alone but I don't think she continued with it and she left this site.
steiner - SNB causes a degree of risk, but so does any surgery on the breast. ALND carries a greater LE risk because so many more nodes are removed, more nodes = more risk. The effects of ALND are what prompted the innovation of SNB.
amy - I just had fat grafting on Dec. 14th to fill hollows above my implants and to soften the step-off - so far, it looks good. I also had two positive nodes but had a complete ALND and did not do rads.
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Specialk... Interesting about alnd and no rads, now I am really anxious to chat with my BS and see how my change in choice of surgery might change my treatment plan. I have a long history of cancer in my family BC especially plus me being 3x positive and being only 34.... A lumpectomy seems to be a scary choice for me. I do not want to travel this road again!
Thanks again for your input0 -
amy - with skin sparing MX and implants you still need the expanders because the implant does not sit between the skin and the muscle because skin will not support an implant. The implant is fitted into a pocket sliced into your pectoral muscle and that is the reason you need an expander first - to stretch the front of the pectoral muscle pocket.
Just one question to ask your PS... What sort of look will you get with nipple sparing and will you have any feeling left in them anyway?
I had skin sparing BMX with immediate free TRAM recon. My PS offered me nipple sparing but was very clear that he could not then guarantee the best looking outcome because the nipples could "fail" or come out pointing in different directions. Since I would have still lost all feeling in the nipples due to cutting of nerves etc I chose to sacrifice my nipples and go for reconstructed nipples that the PS can put in just the right place. I also figure that all breast ducts lead to the nipple so I would have worried about local recurrance in the nipple anyway...
You might also find that with only 2 positive nodes you may not need radiotherapy if you have a BMX and if you and your doctors follow the Z0011 study that we were talking about on the previous page.
steiner - SNB takes only a few nodes so not all channels for lymph are cut off. ALND aims to remove ALL level 1 and sometimes all level 2 nodes and leaves little or no avenue for lymphatic fluid drainage from the arm. It is for this reason that ALND can cause LE in up to 50% of women who have those nodes removed.
SNB does carry a much smaller risk of causing LE and radiotherapy, particularly if it is to the axilla carries adds an additional 7-10% risk of causing LE.
Jenn0 -
ThNks Jenn!
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Bren just to let you know I had 8 nodes removed on the left and no rads (because no invasion). I do have minor LE. I have had minor cuts etc on the left but so far no issues. If I do notice it I clean it and put antibiotic ointment/band-aid on it right away but many times I don't realise till days later. Back then it was standard treatment to remove at least the first level of nodes if your tumor was larger than 5cm.
I've also heard great things about curcumin. When I went to the Illinois Ladies (thread on this forum) holiday party my party gift I gave was spices from The Spice House that included all spices that were good for preventing cancer and a few recipes. Curcumin was on of them.
Lsl327 There are some women that had to stop chemo because of toxicity but very few. Remember if chemo is really giving you trouble you can always stop and many times your onc will reduce your dose if it's that bad or change to a different chemo that isn't as toxic for you. Thing is most women do just fine or they wouldn't be doing this to us. Herceptin really does work better with chemo according to all the studies. Remember most women post about issues. Those who don't have issues don't post about them much. I was so scared of endocrine therapy. OMG 5 years! But I'm about to finish up year 2 and doing fine on it with minimal SE that are actually getting better. I know for a fact that AlaskaAngel is anti-chemo. Do keep that in mind when talking to her.
Amy you're almost there. Yay!
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Steiner - you and I have very similar dx (but different tx I think). I had SNB too, with 4 nodes taken out. My BS said LE is not likely, but always possible. Aside from not using that arm for blood pressure or needles, I haven't taken any other precautions except when getting manicure - I won't let them cut cuticles. I also haven't taken any long plane rides - on the 2 hour flight I did take, my BS said no sleeve necessary, but I will ask about this again before a longer flight.
I'm sorry if I missed this - regarding the 4 vs 6, that is for TCH tx, right?
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LsL: I had to stop Herceptin because it impacted my EF. There are a few of us here who had EF drop and had to stop Herceptin. Mine is back to normal now although not back to where it was when I started. They will track you closely. You'll have a MUGA (or Echo) prior to beginning and usually every 3 months and follow up for several years after.
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Lsl--Lago is correct. If you don't do well with one treatment, your oncologist will take care of you. I ended up in the hospital with neutropenia, a fever and dehydration after my 1st round of taxotere, carboplatin and herceptin. My MO decided that he was "bringing an army to kill a bunch of muskrats" so he toned it down to taxol and herceptin. I'm doing fine, just dealing with the big D and hoping my next 8 treatments go fast. But in the scheme of things, it is no big deal...
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