Told by phone, Invasive Ductile Carcinoma-- little other info
Comments
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I have not seen Perjeta given with Adriamycin either, at least with early stage people on this site. Adjuvent Perjeta is not FDA approved for early stage patients, although some oncologists have convinced insurance companies to cover it for their patients. Neoadjuvent Perjeta is given with Taxotere (docetaxel), not Adriamycin. That is confirmed on the link I previously attached. The drug regimen I spoke about in the other thread is AC-TH - that is Adriamycin/Cytoxan given (usually four infusions), then Taxol/Herceptin (for a varying number of infusions depending on dosing), then continuing with Herceptin for the balance of the year. I have not seen Perjeta added to this regimen either, but I wondered if that was where there was some confusion between the Herceptin and Perjeta, since Adriamycin and Herceptin are not given together, the Herceptin is given subsequently (with a taxane) so that the two cardiotoxic agents are not being given at the same time. So, either your oncologist is out of the loop on Perjeta, or there was some confusion about which regimen and the timing. I would address this again - maybe on the phone or by email, preferably with just you and the doctor speaking. Unless he clarifies that neoadjuvent Perjeta is given with Taxotere, or if he persists in being "anti-Perjeta", I would seek another oncologist if I were you - that is my opinion only. Chemo is a given for a Her2+ tumor that is the size of yours, it is a question of whether you have chemo and then surgery, or surgery and then chemo. Don't worry about taking too much time - it is important to get this right. I had my screening that led to diagnosis on Sept. 9, but didn't have surgery until Nov. 1 - a couple of weeks either way are not that important. If you do neoadjuvent chemo they can get that started pretty quickly - but there will be a flurry of activity in regards to port placement, potential simultaneous SNB (I would want this, because I would want definitive nodal status, but it is not commonly done - my logic is that is they are putting in the port surgically, why not do the SNB then too?) and an echocardiogram or MUGA, maybe an MRI if you haven't had one yet, so be prepared for that. If you decide on surgery first you can usually have a lumpectomy pretty quickly because there is no need to sync up a breast surgeon and a plastic surgeon schedule-wise. If you are concerned about how your breast will look if you do surgery first, consider that neoadjuvent chemo may reduce the tumor size enough that your cosmetic result would be improved. While doing neoadjuvent chemo will hopefully reduce the tumor size - MY main reason for doing neoadjuvent would be to get the Perjeta. On your question regarding BRCA testing - do you have family history of breast cancer among first degree relatives? You might want to ask again if you can do it if you decide on neoadjuvent chemo - the testing takes some time, which you would have while on chemo. The reason I say that is that if you were positive for BRCA then your surgery option would more likely be a bi-lateral mastectomy. Did you ask why they considered you to be low-risk? I am not saying that you aren't - just wondering what their rationale was.
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kayb - how come you could summarize all that so succinctly, and I took half a page? Lol!
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i guess I missed the part about your sister not allowing you to see the surgeon notes. Oh my! You do have your hands full.
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exbrnxgrl -- I'm concerned about my sister, but it's easier than fighting her, and I know I can go off on my own to clarify with the medical folks involved to answer questions and make decisions. She IS finding me extra info and the outside 2nd opinion MO... Which is helpful. I'm just going to have to try and make sure she doesn't put too much pressure on me, but still is able to feel she is doing something helpful in all this (because she needs to--and because it is helpful in some aspects, although annoying in others). I DO tend to be a bit rug-like (I grew up with her, after all--she is only one year younger!). It's a coping mechanism. But she does have my interests at heart and after throwing a ton of stuff out there, she does tend to come around to where I'm headed...
Of course, the big problem is that I'm still totally confused at this point, even though I know a lot more and have decided on some things--like neoadjuvant. That just seems like a good idea to me. To shrink tumor and start attacking the cancer that may have spread...
Now, if only MO had included Perjeta, I'd feel much better! OR give me a good reason, other than the Adriamycin bugaboo...!
No-one can overstep bounds with me. Don't worry! I never get offended by anything, to begin with, and really--these are all such crucial decisions and I'm not set on any particular course of treatment or personal behavior with my sister and others-- All comments are very welcome!!! I REALLY appreciate your time and help.
CassieCat -- Thank you so much for telling me your reasons for neoadjuvant chemo. I don't think anyone mentioned that to me, but I thought that it might be a good thing to shrink tumor --and not get into the lx and find out they had to take a HUGE chunk out plus more later if margins were unclear! So it's nice to know this is a valid consideration (and I'm not just assuming things without any medical confirmation).
SlowDeepBreaths -- I'm seeing the outside MO on Monday (I hope). Things are moving too fast now, given this no-Perjeta problem...! I want Chemo asap, but the right kind of Chemo! My KP MO is fine with TCH... I don't why he isn't for TCHP! ???
If you could have changed health providers, would you have done that to go with the outside MO? It's December and apparently I can switch... but what mess that could cause--not to mention delays! I am really dreading having to do that. But best treatment and doctors would be good... KP is just so convenient--but convenient is no good if the treatment is no good!
How easy is it to change MOs within KP? I called Terri to ask if maybe I could talk to another MO just as an inside-KP 2nd opinion. But I thought KP would be good enough since my case isn't that unusual... but, the no-Perjeta thing has me really worried about KP now!
Thank you for the extra info regarding your bc and treatment. My HER2 was initially inconclusive so they did the FISH. So who knows if my bc is all HER2? That's the tough part with neoadjuvant... although I like the idea that if certain treatments aren't working, they can try others, whereas it harder to know after surgery...
THANK YOU so much for all your help and support!
--I have made copies of my notes (cleaned up) for my sister. She hasn't volunteered her, but I haven't insisted she had them over. She said there really wasn't anything in there that I didn't know... I could put my foot down. I really need to grow a spine, I think! But so many other things on my plate at the moment. And my landline has decided to crap out today! I'm trying to contact people through cel, but I keep hearing calls on landline that I can't answer (I can make out-going calls only!). gaaaah.
SpecialK -- My MO is recommending TCH, so I don't see why he isn't going with TCHP! He didn't SAY it was because it wasn't approved for early stages... although he might have inferred that, since he mentioned something about TCH being a longer-standing, well-tested treatment...
I wrote him an email asking for clarification on his stand on Perjeta. Exactly why he wasn't recommending it and asking about the weird Adriamycin explanation.
I'm wondering if he just isn't into Perjeta and therefore won't push for it in my early stage case? Or if KP is somehow not allowing it???
I guess an outside 2nd opinion--on Monday--will be tremendously useful to me!
I'm worried that I might have to change providers if I can't find a MO inside KP to do the TCHP...
Are there any SE with Perjeta that would be any reason not to have it in my case??? I haven't heard anything. The MO I saw isn't a young guy, but the BC Coordinator said he was up on all the latest treatments and goes to all those conferences... I guess that doesn't always guarantee that they won't be super-conservative in their treatments... *sigh*
Timing is getting to me... the core Biopsy made my barely-detectable by feel lump blow up to a huge egg-size lump and even makes me feel a bit swollen under my arm! --Everyone I see palpates (sp?) me, to check, but that doesn't reassure me... Makes me just think of stupid cancer spreading all over the place...! But I'm trying to stay calm. And to make sure I'm happy with the course of treatment first. THANK you for mentioning your time between dx and start of treatment. That is reassuring!
I have a chemo appt this-coming Wednesday (Just Post-poned to week after)--but may have to postpone if I don't get a satisfactory answer about Perjeta. I liked the MO I had, but that does no good if he's recommending a course of treatment I'm seriously questioning...!
MO didn't approve MRI, just CT of abdomen/hips. I just did that yesterday. Did blood labs, too. Am arranging for MUGI appointment before any Chemo--so that is on stat.
SNB-- BS said SNB would be done at surgery if surgery is first. Mentioned it was possible to do if chemo is first. MO said he didn't think SNB is necessary--citing lymphodema SE. Said ultrasound saw normal in r. ancilla, so he wasn't worried. Does that sound right?
BRCA --low risk???-- I only know of one person related to me who had bc-- Aunt on father's side had it in her 60s. BUT... she was the only girl in her family. Other side of family--I am not sure what their medical history is. Mother and same-age sister--no BC. SO--no genetic testing recommended by doctors. Say likelihood is just too low.
Thank you so much for taking time to help me out. I appreciate it so much! I wouldn't have heard of Perjeta otherwise. And I wouldn't question the MO's no-Perjeta without your help.
kayb -- Don't worry--It's impossible to offend me or reveal too much or ask me too much! I really want to hear all opinions.
Yeah--my sister's approach needs to be tailored--at least a little! I think she's just SO forceful because this is so new and she's had such bad experiences before (her best friend passed from another kind of cancer, despite having doctors in her family and access to top centers/physicians). I'm hoping she will calm down once treatment starts.
Thanks for the FDA quote! It looks like I qualify, as HER2+ and 3cm tumor! --I'm thinking MO might know this, but still not trust Perjeta due to relative new-ness. Might be just too conservative. I'm flailing around trying for 2nd Opinions at the moment...
Yes! I saw Surgeon before FISH test was back with definitive HER2+ result. Thank you for explaining that! Going through after-visit reports is very different from what was actually said during the visit, it seems! They boil it all down to a few sentences, for one thing...!
Thank you SO much for your help. Seriously, this has been so important to me in deciding what I'm going to do.
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Lined up so far:
WAITING -- to hear back from MO about why no Perjeta (aside from confusing Adriamycin explanation he gave in person).
12/8/14 -- outside 2nd op with MO on Monday (I hope).
SOON -- need to get appt for MUGU
12/17/14 -- First Chemo appt. First consult Radiologist appt.
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Sounds like your MO is also confusing a SNB with ALND - complete axillary clearance. If your MO is saying you don't need a SNB at all with a 3cm Her2+ tumor, he is incorrect. A SNB is standard of care and will be done regardless of what kind of surgery you have - I was recommending a SNB prior to neoadjuvent chemo so you are accurately staged. Once you introduce chemo prior to surgery you may never know your true nodal status afterward. I would personally want to know what my nodal status is when dealing with an aggressive form of breast cancer. Imaging is not a reliable means of determining nodal status - I had an MRI and it failed to see two positive nodes.
I does sound as though you are low risk for BRCA - but not no-risk. This is something I wanted because I was adopted, but generally if you develop breast cancer at a somewhat later point in life it is less likely to be BRCA related. I also needed to know my status because I wanted my children to have that information.
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Someone just PMd me to say with my aggressive cancer I should just get surgery first, SNB with it, bmx to reduce recurrence or new cancer. Neoadjuvent and Perjeta or not--that hasn't had all the tests/results over time that surgery first has.
Gah. Am I back to square one? That would be OK if that was the best course. Why is it so hard to know what the best course is? I think I need a computer program to plug in all the info and go over all the aspects and spit out possible answers. There are so many factors, my head is just spinning and I can't seem to keep in mind all the possible choices and all the possible results!
I feel like going to bed and getting away from it all--but I know I can't do that...
Stress level currently pretty high!
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One thing to consider with doing neoadjuvent systemic treatment is that it hopefully gives you the opportunity to feel it working. Those of us who had surgery first have to take it on faith that chemo and Herceptin worked for us - we have no measureable evidence. Also, I had surprise positive nodes and healing issues that prompted four additional surgeries so I was very delayed starting chemo and Herceptin and it was worrisome to me because I had cancer that had already spread regionally. I feel the opposite of the person who PM'ed you - if I was being treated right now I would want the Perjeta. Remember that systemic treatment is not meant to treat cancer in the breast - it is meant to treat cells that have traveled outside the breast - those are the ones that will kill you. That the tumor in your breast may shrink is a bonus, but removing it surgically prior to systemic treatment does nothing to treat any cells that may have traveled.
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Thanks, SpecialK, for all your attention (to my desperate, confused thread!).
Person was saying surgery first to keep cancer from spreading, then Herceptin.
Also said BMX, because of higher chance of reoccurrance or new cancer with bc in general and with aggressive bc in particular. And that no radiation is better for reconstruction.
I like the idea of treating with chemo first to stop any spreading cancer. And the idea making sure the different treatments actually work on my tumor. But is this course still taking a chance since it is newer, with less long-term testing? How do I weigh something like that???
And it does seem like a number of people end up with mx... the whole push towards lx and it being as good in the long term is also a newer idea...
... and swelling post core biopsy--under my arm and in my breast--is freaking me out...
I'd go for xanax although that would probably make me crawl into bed and cover my head, which would be bad!
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In terms of surgery there are several schools of thought. Statistically, lumpectomy and radiation are supposed to have a slight edge over mastectomy in survival rates - at least for hormonally positive tumors. Here is some info:
http://www.breastcancer.org/research-news/lx-w-rads-better-than-mx-for-some
Having a lumpectomy and radiation can potentially complicate reconstruction if you chose to have a mastectomy later on, but you should also rely on what counsel you are receiving from your breast surgeon who has examined you, has the particulars for you as an individual patient, and will hopefully make a sound recommendation. It is vital to educate yourself, but your surgical decision isn't made in a vacuum.
The decision to have a mastectomy is very individual, and one person's reasons are not universal for all. I was a lumpectomy candidate who chose bi-lateral mastectomy because my 2cm cancer was missed on mammography, but seen on ultrasound right afterward. I did not feel comfortable placing my faith in imaging going forward. I previously mentioned the MRI that did not see the positive nodes - one of which was 6mm, the size of a stage 1 breast lump. Clearly, despite my complicated reconstruction experience, it was the correct choice for me. I also had both ADH and ALH in the non-cancer breast, so I have no regrets. Understand that there is potential for complications with reconstruction after mastectomy, and the possible necessity for additional surgeries.
There is an excellent thread by one of BCO's most articulate members, Beesie, regarding the decision between lumpectomy and mastectomy. I will link it here - It is a long post and I didn't want to hijack your thread with it, but I feel it is very much worth reading prior to making a decision. Beesie discusses the many pros and cons to both types of surgery in a very straightforward and easy to understand way - it is an excellent post for the newly diagnosed. Click on the link and scroll down to the post at 2:42 p.m.
https://community.breastcancer.org/forum/96/topic/816245?page=1#post_3835034
kayb's point that Perjeta has been extensively studied already - or it wouldn't be FDA approved and adopted for early stage Her2+ treatment is valid - BTW, I always agree with everything she posts too! For me, the delay in treating all eligible patients with Perjeta has less to do with how much it has been studied, and more to do with individual oncology practices and protocols, and reluctance to embrace change and innovation, even if it is beneficial for newly diagnosed patients.
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It's all very mind boggling, isn't it april? That feeling is so fresh in my mind.
I don't regret my decisions. KP pushed me really hard to have the SNB - It was my choice not to have it. I read that very same study kayb, which helped me to make my choice. Had I been a "healthy" person, my choices may have been different. I'm glad I did the neoadjuvant chemo - I had the benefit of knowing how my tumors responded to treatment. It also allowed me to have a less invasive surgery which was important to me considering my history. When you have unanswered questions and doubts, a second opinion can be so valuable. I had a lot of faith in my second opinion, and I feel fortunate my KP MO was willing to work with him.
I think everyone here just wants you to know ALL your options. We can steer you to the latest recommendations, and share our own experiences, but in the end, it's important to find a MO you trust, and go with a treatment plan that makes sense to you. I've found it's important to have confidence in your MO. The ladies that have responded here are well versed in HER2. Take your notes and present them at your second opinion appointment.
If you could have changed health providers, would you have done that to go with the outside MO?
I didn't have that option so I never gave it much thought. I do know I felt very comfortable with my second opinion MO - everything he said made perfect sense to me with the research I had done. I felt I had the best of both worlds having two MO's on my case. If the KP MO didn't agree with my second opinion, I would have found one that did.
Gentle hugs april. It's my hope your second opinion doctor will help to give you a clearer path. In the meantime, try to stay distracted for a few hours and take a little mental break. This will all still be here in the morning.
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kayb -- You are fantastic at pulling up those quotes! Do you have all that info saved somewhere or you just know what you're googling? I can barely figure out what I should be considering and can barely remember what my dx is and how that should affect treatment... I'm definitely on overload. I'm surprised I can even put two words together that make any sense at all...
I've got them all copied and have thrown some at my MO in emails. I've sent 3 separate emails to him so far, but he's out of the office...
I'm still trying to see another MO within KP. I have set up appt with outside MO, at least. Good thing I have credit cards!
Thanks also for info on the timing of your dx and start of treatment. KP told me they like to keep it to a month at most, and that makes sense... If only I can settle on a treatment and the BS, MO and even the healthcare provider! AGH.
But you both are making me feel a bit better about moving towards neoadjuvent chemo.
SpecialK -- When I talked to my BS, my HER2 was not confirmed... so I've just emailed her to ask if that changes things. Also to say that I really wasn't set on lx. and therefore going with neoadjuvent because of the size of my turmor. I could totally consider mx or bmx if that had the best prognosis... I'll see what she says.
I'm also sort of getting locked into neoadjuvent because switching to surgery first will delay treatment more... But will still consider it if that gives a better prognosis.
If lx and radiation gives me a slightly better edge, I don't mind taking a risk on reconstruction problems (although--I'd really prefer to avoid that, but wouldn't we all?).
Playing the numbers game is probably also messing me up, since everything can point statistically one way and what actually happens can be totally different! It's difficult to know how much weight to put on a few percentages here or there. I'm guessing that's why the BS and MO say the patient's desires are important. But I don't have any strong preferences. Just the most sensible treatment, with hopes of the best outcome!
Mammography missed my tumor! I found it months after the mammo, with a very casual self-exam! So I'm not terribly optimistic about mammograms catching future cancers, either! --They have looked back at my March mammo. and say there isn't anything there, which means a super-growing tumor--or stuff that just isn't easily seen on a mammo. OR BOTH...! So-- 0 to 3cm from March to November...! Or not detectible in dense breast tissue??? They seem to be saying the former...
Anyway... so does this point more towards bmx? Or should I just take my chances?
I have already seen Beesie's excellent write-up on lx vs mx. I'm not sure it helps me that much, since I just want whatever makes sense and I have some preferences, but they are trumped by whatever works the best. and it's figuring out what is best purely as far as best results for getting rid of the cancer and lowering recurrence and new cancers... Doctors were saying new cancers and re-ocurrance can happen even with mx.. but I just want to know the better odds! And if all is about the same, then, the course that will be less pain and trouble, because why go for that? I don't NEED to be certain and I don't worry too much about stuff that MAY happen, so doing something just to make me feel better about it, but doesn't actually affect my chances of more cancer or more or greater surgeries... that's not a big factor with me. I'd like to be as normal as I can, but I'd rather be around to worry about 'normal' than not!
Perjeta-- FDA... I figure it's had to have a lot of testing... although I've already had prescribed drugs that were later found to have nasty enough side effects that they have been pulled from the market (and I see them mentioned in those lawyer ads on tv!). So... it does make me feel safer than a clinical trial, I still worry. The thing is, if the risk is worth it? Is there a conservative way to achieve the same results? Is the neoadjuvent TCH/P treatment achieving better results to make the risk worth it?
I'm definitely leaning towards it, since the doctors aren't saying that it's crazy-thinking to do this. Still... doctors have their own biases and feelings about things... *sigh*
Thanks so much for the links!
And the reassurance that neoadjuvent chemo isn't taking unusual risks, and may be the better way to go... So far I'm heading along that course. I just need my MO to put Perjeta in there!
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I don't know if you have seen this link regarding the effectiveness of the addition of Perjeta to Taxotere and Herceptin, but it illustrates why it is potentially so important - it doubled the number of patients who had a pathological complete response - meaning they could find no active cancer cells by the time they had surgery.
http://www.breastcancer.org/research-news/20131004-2
One thing to consider when making surgery decisions is that nobody can tell you which approach is most beneficial or least risky. Recurrence or complications are unknowns and not predictable. Maybe make a list of the pros and cons of each and then give it some quiet consideration.
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April,
It was easy for me to switch mo's within Kaiser. I had seen my original mo about 2x and didn't feel we meshed. I loved my RO, and somehow we got to talking about good doctor/patient fits. I felt comfortable telling him that although Dr. X was very knowledgable, the fit wasn't good. He said he thought that I would like Dr.Z and even made the appointment for me. It turned out to a great match. Take care.
Caryn
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exbrnxgrl -- I contacted the KP BC Coordinator and she said she couldn't get me any time with another MO within the next few weeks. I'm really feeling pressured by time (I swear, I think I'm getting pains in my breast now, and getting paranoid about funny feeling under my arm... It's so easy to be totally paranoid!)
Maybe I should have just gone right to surgery? But then, no Perjeta. But it's not on the plan my MO has outlined. This is just so stressful!
Thanks for telling me it worked out OK for you, exbrnxgrl, as far as changing MOs... I'll see what happens in my case. The BC Coordinator said she'd try and consult the... I forget what she called it, but group of people who oversee things??? And see if they have any way to get things to work out with the lack of Perjeta and lack of SNB and worries about whether I should just go right to surgery... and the time constraints, since this needs to be settled within a month of the dx...
SpecialK -- Thanks for the link. I'm checking it out now.
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april- you are getting some great info here.
Just wanted to say that a bmx or mx doesn't mean escaping radiation necessarily. The latest meta analysis released March 2014 shows clear survival benefits for radiation in those who have had mx IF you have even one positive node (which I hope you don't). So if you do have a positive node lx or mx won't matter, you will very likely get radiation either way. Another reason to have the SNB prior to chemo maybe?
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clarrn -- I think I'm getting the whole thing: surgery/chemo/radiation/estrogen-related treatments, at this point. And I don't mind. Whatever works!
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There seems to be a number of different courses open to me--
1. Lumpectomy with Chemo first to shrink tumor, then the rest -- I'm thinking my MO might be concerned about SE with Perjeta... since he doesn't seem to be suggesting it, just TCH. No SNB because of possible lymphodema. Surgery LX. then Radiation, Herceptin 2 years, Femara 5 years.
2. MX (with SNB?), then Chem, Radiation, long-term treatment, plus reconstruction.
3. BMX (with SNB?), then Chem, Radiation, long-term treatment,, then everything plus reconstruction.
I still haven't got a clear idea from the MO and BS and soon to be consulted 2nd Opinion MO as to which is the best course for me. I'm open to whatever will yield the best results... But doctors don't like to really steer decisions, so they are guessing at what I want and then running with it, but I need to check with them because they know more than I do about this stuff. So right now, I have be presented with lots of options, but am not clear on what is best in my case.
The doctors seem to be saying that all courses are good. OK, so yes, none of them are anything out of the ordinary, but there should be a way to know if one is better than the other for me. I guess I just need to go over that point by point... I just don't feel that I know enough...
SNB... ultrasound days no r.ancilla involvement, but that's not definitive. I think the MO doesn't have it scheduled because he doesn't like the risks of lymphodema and thinks the risk of not having it is better... At least, that's what I THINK he thinks!
Perjeta... I need to know exactly why MO doesn't think this is a good idea.
MX... I need to revisit the idea of mx to see if anyone thinks that would be better, before OR after chemo!!!
Neoadjuvent -- or not? is one better than another? Surgery first will include a SNB and accurate path. Would have mx not lx in that case.
---I will apply all the info I've picked up here to my decision, but it would be NICE if the doctors could give me more of a clue as to the best option with no preconditions from me flavoring their suggestions. I've tried to get these answers, but most are "it's up to you, it's all about the same!" which isn't good for ME. I like some actual "this is good for this/that is bad for that" kind of info. They supposedly can see all my info and should be better at telling me what is up. Hopefully I'll be able to get questions answered by the docs that are treating me, to make this decision easier for me...!!!
(seriously... I'm thnking my under-arm is swollen, now! gah.)
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Sentinel Node Biopsy (SNB) is standard of care whether or not you have a lumpectomy of mastectomy. It is not in your oncologist's wheelhouse to recommend whether or not you have it - it is your surgeon that governs that decision. I am wondering if there is some confusion between SNB and ALND - Axillary Lymph Node Dissection - the complete clearance of the axilla, which does have a greater risk of lymphedema. The purpose of the development of SNB is to do less of the ALND surgery, but I would not dream of not having a SNB with invasive cancer, let alone Her2+ disease, it is too important a diagnostic tool. The only folks who sometimes get to skip a SNB are those who have pure DCIS and no invasive component to their cancer. Have you seen a radiation oncologist? Why are you assuming that you will have radiation if you have a mastectomy? It is necessary with a lumpectomy, but not a given with mastectomy. Have you been told by either your surgeon or oncologist that they recommend radiation?
It is unlikely that you are going to find doctors who will lay out the exact path you should follow because they are trying to let you make some choices amongst things they consider to be equivalent options. Neoadjuvent chemo/Herceptin offers the addition of Perjeta, if you pursue that, and possibly shrinks your mass so that lumpectomy is possibly easier - but you can also have a mastectomy if you prefer that. A mastectomy with adjuvant chemo may preclude the need for radiation, and offers a definitive SNB for staging info, if you elect not to do one in advance of neo-chemo. A lumpectomy with adjuvant chemo will still require radiation after chemo is complete, but while still on Herceptin only.
Also, you do not have Herceptin infusions for two years, only one.
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I've got an appointment with a radiologist in 1.5 weeks...
I think I was going to get a lumpectomy with the neoadjuvent treatment... But I was thinking I could go with a mx if it was better for some reason-=-or if I skipped the neoadjuvent and went old-school and had chemo and whatever after... no Perjeta.
If i'm doing the chemo first that would start in a week or two--no surgery scheduled! So when would the SNB happen?
Radiation because both surgeon and oncologist were thinking lumpectomy after chemo. Would a mx be better??? Surgeon and Onc said both LX and MX would yield same long-term results. --but someone told me LX looks better statistically because it's mostly done by super-early stage or 0 stage people! agh!
I am still confused over all the different variables...!
Should I do lx or mx with my grade/size/HER2? (it's lx for now, but only because doctors said it was all the same and lx is an easier surgery).
Chemo before or after???
Insist on Perjeta if doing chemo before?
Are there reconstructions done on lx? Can I just do that first and get SNB and then do chemo after--or just mx it or both? and reconstruct?
I really am so mixed up that I have no idea now. I thought I did. Was thinking neoadjuvent then lumpectomy then radiation and etc., as oncologist outlined==but have to ask him about perjeta and SNB
. I'm still pretty sure he mentioned Adriamycin as a reason not to do Perjeta--which is not right. And Lymphodema reason for not doing SNB...!!! If so--I might need a now Onco--but BC coord says there's no availability within weeks! Should I try and get another onco at another KP center??? I sometimes am directed to go to another center farther away--for the MUGU, for instance.
... Sorry I'm being so indecisive!!! I just feel that I really don't know enough on my own... I try reading up but my eyes are crossing and I'm still confused about what is best.
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http://www.lbbc.org/Understanding-Breast-Cancer/Br...
Above is the link to the most recent info regarding lumpectomy vs mastectomy and survival. The groups were matched by very selective criteria. Who ever gave you the info that the groups were not equal is incorrect. The data is based on 20 years of follow up. The most recent data, given from meta analysis tells us that lumpectomy and radiation shows improved survival.
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I wish to clarify one point. I mention the study above simply because what you, April, were previously told by someone else is INCORRECT. The reason why the study was conducted was simply to understand whether or not having a lumpectomy with radiation still proves to be reasonable choice when considering mastectomy or lumpectomy. That said, for some women, there is NO choice. What this study confirms is that for those patients who have a choice, having a lumpectomy and radiation is a reasonable option based on 20 years of data.
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Read the fine print of this study! It's flawed/ skewed.
It was probably paid by the insurance companies.
"A higher percentage of patients who had mastectomy alone or with radiation had larger tumor sizes and positive lymph nodes compared with those who had lumpectomy with radiation. Yet, even when controlling for positive lymph nodes and tumor size, those who had lumpectomy plus radiation continued to show improved survival. Further study is needed to confirm the survival benefit of lumpectomy plus radiation."
They used mastectomy patients that had larger tumors and positive lymph nodes to compare!!!! It's not a fair comparison.
In addition, they said once it was adjusted to the same stage and size, lumpectomy showed improved survival. What does that mean? It doesn't mean that it shows that they live longer still. It just says they are alive... but at what stage are they comparing at this point? Stage 1 with no lymph node invovlement?
Insurance does not pay for reconstruction after lumpectomy in many states.
Not all surgeons specialize in oncology surgery so they would rather do a lumpectomy because it is easier for them.
Radiation makes any future reconstruction much more complicated and increases risk of infection.
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Sunny...you are missing the point of the context of doing the meta analysis. The study wished to address the topic of the CHOICE for lumpectomy with radiation, acknowledging that it was actually begun being offered 40 years ago. They looked at outcomes over the last TWENTY years because they were able to look at treatments that included the use of endocrine therapy...which wasn't avaliable 40 years ago. What the study was trying to determine was if offering lumpectomy with radiation confirmed its own benefit since it became offered. The analysis CONFIRMED that it is as beneficial as mastectomy and perhaps even better and that future observation might confirm. But make no mistake...there was a CONTROLLED observation of the two groups...which speaks to April's concern.
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Voracious, All I can say is why don't you go look at all the people in stage IV with recurrences that started out at stage 1 or 2. Many had lumpectomy. Or go to the blog Accidental Amazon and see her feelings about lumpectomy/ radiation. Or how many people start off with lumpectomy only to later get mastectomy. I figured I'd spare her the agony.
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I don't believe in a 'controlled' study that compares 70% lumpectomy to 30% mastectomy. And of the 30% mastectomy patients they use ones with larger tumors and more lymph node involvement. What are they trying to prove? Lymph node involvement directly corresponds with survival and they know it so that is why the intentionally used mastectomy patients with more lymph nodes. But the headline is all people read so they think oh! it's the same when it is not at all
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sunny...I beg to differ with you. Again you are taking the fine points out of context...IN THE CONTROLLED GROUP...THEY COMPARED APPLES TO APPLES. Believe what ever it is you like. However the fact remains that in this meta analysis lumpectomy and radiation, when given a CHOICE is a viable option to mastectomy based on twenty years of observation. This examination lends credence to the patients and their physicians who were courageous enough and willing to participate in clinical trials 40 years ago examining the potential benefit of lumpectomy and radiation.
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They said they didn't compare apples to apples in the 'controlled' group so how do you theorize that they compared it like that? From what I see if you are really comparing apples to apples then after mastectomy you end up with an orange and then with a lumpectomy you end up with grape or avocado with radiation
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FYI,
that story was written by Marcia Frellick who seems to be cozy with the radiologists.
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Sunny....the article states, "Yet, even when controlling for positive lymph nodes and tumor size, those who had lumpectomy plus radiation continued to show improved survival."I understand your OPINION. However, let's not mistake facts.
And Kay....I too, have problems with the studies. I'm looking forward to the day when we can look at clinical trials based on genomics and hopefully then get better data so we can all make informed decisions.
Sunny....I think you are speaking from an emotional level and that's fine. However, all of us need to make a decision based on the best available evidence. And with respect to the writer of the article....she is quoting from a study that was published in JAMA. That study was published last year and the results appear in many journals, newspapers and even here at breastcancer.org's website.
Just want to add, at this year's San Antonio Breast Cancer Symposium, which begins this week, we should be hearing the announcement of MANY important studies. So stay tuned......
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I am not being emotional. I am far too logical and can read through all the BS fine print and skewed statistics.
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I love you all discussing this! It really helps me to know all the different aspects, and how to better view studies and the wording and the influences...!
Please do continue!
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OK--my MO called me up to try and clarify--
He said==
He thought neoadjuvent is good with my type. Herceptin asap is better than waiting until after surgery.
He likes TCH chemo.
He says he will do Perjeta, but still doesn't like that it isn't as test long-term--and still insists that the FDA protocol for AFTER surgery with Perjeta is
etirudicina (sorry--notes taken over phone!!), herbicin and cytoxan-- which is basically anthracyclene/adriamycin -- and he dislikes SE to heart and possible leukemia for that.
Can anyone point me to the FDA protocol for post-surgery treatment using Perjeta??? I looked on Perjeta pages, but couldn't find...!
He as me down for "radiation, Herceptin--then femara for 5 years, after the surgery.
He still says he'd rather not risk lymphodema and not do the SNB or the whatever-it-is-called-surgically-installed-things for getting Chemo... He really thinks SNB isn't as important as the risks. DOesn't think I need the whatever the chemo-giving-implanted thing is.
(seriously--I have SO many papers and terms--I can't find everything easily adn my brain has shut down so I can hardly recall any of the terms at the moment!)
He also mentioned that he had a slight preference for MX over LX in my case-- after neoadjuvent chemo. So much for the MX/LX being all the same! I'm glad he spoke up, though! He said LX was good for preserving breast tissue only. Inferring, I guess, that in my case, there might be an edge to be had with an MX.
And he said I should maybe get 2nd BS opinion and 2nd MO opinion--and will try and arrange it.
--------------------
I'm already getting one 2nd MO opinion, outside of KP. But I REALLY worry about going outside my carrier at this point. I'm more worried about not getting spread to lymph nodes than perfect surgery/reconstruction--although I DO want that, of course!
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