Told by phone, Invasive Ductile Carcinoma-- little other info
Comments
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hi April,
I had surgery about 6 weeks after dx due to coordinating schedule of surgeon and plastic surgeon. No harm done. Seeing an mo now, before the surgical pathology report may not yield much info, but may ease your mind. Adjuvant chemo is used under specific circumstances, one example being ibc or really large tumors. Neo-adjuvant tx is more common, and yes, adjuvant tx may cause certain things i.e. Initial Size of tumor, to never be known. Please tell your sister that waiting and planning for a few weeks won't much change things. By all means, get a second opinion as this can help you feel more comfortable and confident about your situation. Thinking of you. Except for the most dire situations, things don't have to be done yesterday (my dad was like that when I was dx'ed)
Caryn
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april - sorry you have to be here, but there is great support. I think the critical piece of information for you in deciding whether to have chemo or surgery first is the conclusive result from your Her2 testing. If you are Her2+ there is a combo of drugs that is only FDA approved for use prior to surgery - this is a new drug for Her2+ patients, and is currently approved for neoadjuvent (pre-surgery) use. The name of this drug is Perjeta and it is added to Herceptin and combined with chemo for six treatments, then you move on to surgery, then continue with the Herceptin only. I think it would be valuable to speak with an oncologist to get some perspective on this. If your Her2 status is negative, then having surgery or chemo first is more of a choice. It is a common feeling to want to have surgery first just to get the cancer out but if you are Her2+ and have the option of receiving this drug regimen it can also be gratifying to see the tumor shrinking. If you have concerns about accurate staging you can have a sentinel node biopsy (SNB) done when you have a chemo port placed and that, combined with imaging, will give an accurate stage. I have a friend who did this so that she would know her nodal status prior to chemo.
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Excellent advice here April.
I had neoadjuvent chemo as well. Unfortunately, Perjeta was approved right after I started, so I didn't get the benefit of that drug. I followed that with a lumpectomy and radiation. I chose not to have the SNB because it wouldn't have changed my treatment plan. I didn't really care to know my true stage, and I had many pre-existing conditions that also influenced that decision.
Don't feel rushed. Educate yourself on all the options. It's a lot to take in at the beginning, but once your decisions are made, it will get easier.
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I'd echo that finding out your HER2 status is important before making plans for surgery and chemo, and in which order.
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exbrnxgrl -- Thanks for the info. The doctor and others have never said that time was at a minimum... I think it was sitting here with my sister who is SO anxious to "just get it out!" that is making me anxious a bit (I try and tell her to try not to make me stress! but she means well, and is just a phenomenal worry-wort!). Surgeon said the HER2 FISH thing might take a week or more until results are back, and that freaked her, too. (I'm more of a "if you can't change things, just deal" person... oh, and some ignoring-denial until I have to deal is in there, too, which probably is why she pushes harder.) Do you think I need the HER2 results before deciding treatment?
SpecialK -- Great info! Thanks! So HER2 status is important to know-- mostly for the chemo aspects? Or for everything? They said results from the FISH might not be in for a week or two. That's a while! I guess I may have to see an oncologist just to get some more info, even if they won't know all that much. If I'm going to be getting chemo, at least they can tell me about that (whether with that Perjeta is helpful to me or not). Also, thanks for telling me about the SNB/chemo port option. I was mostly just wondering if having chemo before messed with surgery (delayed schedules) or messed with accurate Staging. I guess seeing an oncologist to ask about that could be helpful...?
SlowDeepBreaths -- What were your reasons for having chemo first? The surgeon told me, in my case, it wasn't necessary to do it before or after, it was probably going to have to happen no matter what. I asked her if there was anything good/bad about doing it before. She said only that it MIGHT shrink the tumor a bit, so it was mostly a cosmetic thing. I'm not too worried about cosmetics, but I thought if all things were equal, why not shrink it? But now I'm second-guessing and not sure if chemo before/after is equal or what. Doctors tend to be so conservative in what they say... I've only seen her once so it's hard to say, although she seemed pretty up-front. But then, she doesn't know me, either. My sister was thinking that she maybe thinks I'm totally concerned with cosmetics--which I'm not--and so said chemo before might be an option when the better one would be chemo after! gah! I don't know. Guess a talk with an oncologist might be useful??? Or no???
CassieCat -- Thanks for the comment. There are so many different things to think about that it's hard to know what needs to be in place in order to make which decisions! I figured the HER2 was important but the surgeon didn't say I had to wait for it... although she didn't say otherwise, either... Do you think taking a week or more for a FISH is a long time to wait? Do you know if there's a way to expedite it--or just not worry and wait until it comes? Surgeon said it might take that long. She didn't seem worried, but I have no clue... or rather, some clue that it's not a terrible thing to wait, but am just not sure about much at this point...
kayb -- Oh. OK, now that's several of you agreeing on HER2 first. Would talking to an oncologist help me figure out if chemo first or after would be better? Too many choices can be confusing, particularly if there's no strong indication either way! --Oh, thanks for the Grade/Stage clarification. I'm sure I'm getting a lot of things confused (not easy reading those reports and figuring them out!). I need to go and figure out what grade 2 means--what does that mean for treatment?
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My sister just ran in here and says that HER2 is only important for the chemo and that I should just get myself into surgery ASAP and stop mucking about (I'm staying at her house--she wanted to come along on the surgery appointment). *sigh* I have a feeling that telling her to calm down and not rush things isn't going to be heard. But, really, do I need to just get into surgery? Is surgery first, chemo after and figuring out HER2 into it later, better? OR at least SCHEDULING surgery and then having the FISH results come back in the meantime, the most obvious way to go??? I mean, I'm OK with that. Totally OK. I just get a bit anal when it comes to checking things out before making decisions. I have no clear desire aside from getting through this.
I need to call the BC Coordinator. She was supposed to call this morning, but hasn't yet. (My sister also asked, rather forcefully, why I hadn't called the BC Coordinator yet, myself! --I just told her she was stressing me out, but it just makes her more upset... I don't want to be mean to her, since she's trying to help, but she's a lot more forceful person than I am. I'm a bit wishy-washy, which aggravates her a little. Plus. she's had friends die of cancer, so it's tough for her. I think I need to feel I have a little control, so I tend to want to slow down and check everything out first...)
OK-- She's saying-- Chemo before could mess me up so that surgery is delayed. Staging is better to know before having Chemo-- so oncologist knows what the deal is. HER2 not important when doing surgery first, more important for after/chemo. True???? Is it just obvious that chemo should follow, if there's no major reason it shouldn't be afterwards?
I mean, I don't have a real reason to have chemo before. Surgeon didn't suggest it. I only asked because I was curious. So if it's better after, that's cool. aaaaaaaggggh.
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Just FYI--
58yrs. Type 2 but otherwise healthy (although who knows at this point? I may have all kinds of stuff going on that hasn't been found yet!!!).
Tumor 3cm, situated in middle depth 12:00. B-cup.
Thinking of lumpectomy in the one (R) breast so far, with Sentinel Node thing. There have been no tests done on my L breast so far.
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April25,
Your sister sounds like my dad's long lost twin! Like you sister, my dad meant well and had only my best interests at heart. However, he was neither a surgeon or onc and viewed bc too simplistically. He was annoyed with me for waiting to coordinate dates with bs and my hand picked ps. He thought it would be better to have the bmx and do recon later. I wanted it done together and would have been unhappy otherwise. I also needed the time to fully understand my situation as new pieces of info became available. I guess my point is that, although you don't want to wait too long, take the time to be very comfortable with the tx plans and your doctors (I switched one of my docs and got my second opinion during this waiting period). I have no regrets, I felt fully informed about everything and all the outcomes are as good as could be expected. If I had rushed to surgery, I might not have been so positive about the experience.
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April, I chose chemo first because I had a history of slow healing and infections. My team was concerned that if I did surgery first, complications would delay chemo. I also had two tumors with different pathologies. I did get the added benefit of knowing whether the chemo was working, and in my case that information was very helpful. I didn't make any decisions until I knew my pathology. I also got a second opinion outside of my group.
Everyone has different circumstances that determine treatment choices. Unfortunately, it's not a one size fits all.
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My sister (who has unfortunately been through this too many times) went with me and DH to the first BS appointment. She knew to ask the doctor how urgent my situation was. The BS assured us that there was time to do things the way we wanted them done. In other words, no great urgency. My LX surgery ended up being 8 weeks after that first appointment. That was mostly due to scheduling: I wanted that BS, and a particular anesthesiologist. Getting both of them and the OR at the same time was difficult. Then it was five weeks after that when I had the BMX. Again, BS, anesthesiologist, OR, and a PS was added for that one. It was a bit of a scheduling nightmare. I'm glad I took my time though and got who I wanted.
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April, I don't think any of us are prepared for the amazing multiplicity of grades, stages, and varieties of breast cancer, and the number of potential treatment choices they throw at us. The choices are staggering and it is easy to get thrown into analysis paralysis.
I want you to know that the FISH test does take time and I don't think any of us learned our HER status right away. I know I had to wait. Until a few minutes ago, I was completely unaware of the advantages of presurgical chemo for those who are HER+. I wanted the thing out, and scheduled my lumpectomy asap. In my case, asap took almost two months. Some of that was waiting for an MRI, then another biopsy on a new lesion (turned out to be benign) visible only on the MRI. Some of the time was spent vacillating between lumpectomy and mastectomy and all the reconstruction options, and some was the Christmas holidays, when my surgeon was decidedly not going to agree to operate on me.
In my case, lumpectomy followed by radiation turned out to be clearly indicated, so I did not meet with a medical oncologist until a couple of weeks after the surgery. Remember that your surgeon is your surgical oncologist, that he consults regularly with medical and radiology oncologists, and can answer most, if not all, of the questions you have right now. He (or she) does want and need to know your concerns, so do not hesitate to call or email him, or set another appointment. He can also refer you to a medical oncologist or two. Do keep in mind that until he sees your post surgical pathology, an MO can only speak with you generally, probably simply repeating what your surgical oncologist has already indicated.
If you know what kind of surgery you want, and want to avoid the holiday scheduling mess, you can go ahead and schedule it, then just cancel if it turns out that chemo ought to be your first step.
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The importance of determining your Her2 status BEFORE surgery is that the new drug Perjeta is only available for FDA approved use PRIOR to surgery. I would definitely speak to an oncologist - since that is who administers chemo/Herceptin/Perjeta, and get their take. One week delay in finding out a test result will not change anything. Making decisions based on your sister's level of anxiety is not prudent when it comes to the best choices for you as an individual patient. Neoadjuvent chemo with Herceptin and Perjeta for those who are Her2+ is state of the art for early stage patients - it is the best currently offered right now, better than the chemo/Herceptin only that would be offered if you have surgery first. Your sister is mistaken regarding Her2 status - it is important to know this prior to surgery so that if you are positive you are able to receive this new drug. Also, as I said before, if you are Her2+, need chemo/Herceptin/Perjeta, you can have your SNB done at the time of port placement and your correct staging will be known. It is important to note that your sister's logic of chemo potentially complicating surgery can also work in reverse - surgical complications can delay chemo as well.
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Sometimes family and friends can be the best thing and the worst thing during times like these. *sigh*
I'm super-glad she's around and cares, and she really is out there gathering a lot of info (she knows a ton of doctors, surgeons, friends with husbands who are surgeons, etc.), and she's had friends who fought cancer, so her knowledge and research is good. It helps to have that.
BUT. GAH. We just had a drag out fight because she claimed I wasn't listening to her and I should just tell her if I was bothering her--but she gets all defensive anyway! I'm now crying and I haven't done that all through my diagnosis so far! I she says she can't change. I said, just try not to talk over people when I'm on the phone with my BC coordinator and she said, "Well just TELL me!" and I thought I just did. crap-crap-crap
I'm not thinking she's upsetting me more than it's worth--but I know I'll need her because I don't have anyone else. She's not bad, just a royal pain sometimes!
(currently feeling like family is more bad than good right now. Can I just deal with surgery, chemo, radiation on my own, thank you??? People are so difficult sometimes... I know she's just like this when she's scared, but geesh! You'd think she'd at least try and not say anything and withdraw until cooler--- but NO.
Maybe I can scare up some friends to help me out, but that'll just hurt her, and unlike her, I worry about trying not to bother/worry/antagonize others!
aaaaggghhh! I'm dealing with enough. Why not just be supportive????? It's not like we're really arguing about anything at all, either. She's just stressed. bleh...
OK, maybe I'm going to ban her from future appointments and phone calls??? Sounds harsh, but really--I can kind of handle this, and in my own way.
We are super-close, but that means when she is mean she really knows how to hurt. And she isn't mean in a personal way---she just gets all riled up over nothing. She used to ALWAYS have to be RIGHT. Now she's a tad mellower, but wow, I had to always watch what I was saying because she'd grab onto the stupidest thing--that I didn't even CARE about--and flog it to death. I'd even try to walk away, since it wasn't even important and saying that didn't get anywhere, but it wouldn't help. (And of course she'd never admit she has a problem at all with that. I guess it's insecurity. She's a year younger than me and I'm kind of mellow but she's always thought the world was against her.)
Hmmm... is there a thread for dealing with family and friends??? I need to go find that, if so!!!!
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NEW INFO:
BC Coordinator set up appt. with oncologist in 2 days. She said it's good just to talk with him to get more info. If I want to go right to lumpectomy, then I can call right after to schedule that.
She said she THINKS the HER2 might be in today. She's not 100% sure if this was the FISH or not though, but it looks like HER2+ --I've been too busy dealing with stuff to even look that up and know what that means!
So I'm basically where I was before, but with things a bit clearer. Just have my sister to deal with...!
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Dear April,
Every relationship has its limits and conditions. In a way, it is simple. Either you can be unhappy or your sister can be unhappy. It's your choice. She'll get over it one way or the other.
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April I have 3 sisters.....I'm about to turn 60 in a couple of weeks! Yikes!!! When they found out I had BC my youngest one (49)was scared to death...so I didn't talk about it too much. The next youngest (56) cried...I told her not to call me unless she could keep it together. My oldest (61)...told me I was going to be okay. So I talked openly with her the most. I also told all 3 of them I would initiate the conversation if I felt like talking about and would give them information as I got it...so they would stop asking questions.
As it turned out my oldest sister was right....I'm fine and you will be too!!!
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exbrnxgrl -- Everyone seems to think they know something...! Which is fine, as long as they don't also insist they know better. Ah, well! They mean well, at least...
I'm kind of easy-going. Maybe too much. But I do know how to make up my own mind. It's just easier if I can go through the process myself. My sister has a hard time not taking control! I love her, but I'm glad we live in different houses.
SlowDeepBreaths -- Thanks for telling me about your reasons for doing chemo first! That's interesting to know that there are other reasons than just trying to shrink the tumor.
Janett2014 -- I'd definitely want to take enough time to line up the right team! I'm glad you were able to! ... It's weird because things are moving as fast as possible, but sister is still unhappy. She like drama, I think (she married drama! I don't know how they do it, but it's constantly something or other with them! My nephew is the level-headed one-- I secretly think that's because he's had to grow up coping!) Heh. My sister would kill me (and be super-hurt and super-angry) if she read that.
BrooksideVT -- It's a week or so since my Core-Biopsy, and I think they sent for the FISH right away. The surgeon was being conservative in estimating the FISH report. My BC Coordinator said she thinks the test just came in and it looks HER+. I've got an oncology appt. day after tomorrow--so I can check with him about chemo before/after and stuff like Perjeta. I'm happy now that I'm seeing him before just running straight to surgery--since it's likely I'm going to have chemo at some point. This way I can make sure it's not a mistake to do it before or after. My BC Coordinator said she could set up the surgery whenever I give her a call... so that's good. She said the surgeon isn't accepting anyone over the next day or two anyway, so there's no way to hurry that before the onco appt anyway. Happily, it looks like things are happening and not getting held up in any detrimental way. Yay!
SpecialK -- Wow. So I really do need to talk with the oncologist about if Perjeta would be good for me or not (since I'm now looking HER2+). So I've got that appointment instead of just running right to surgery. Thanks for the input! I'd never heard of perjeta or if it might work in my case. You are a total life-saver (and on this board, that's no joke!). I'm glad that I'm not just being stupid in seeing an onco first to see if having chemo before or after is best!
WinningSoFar -- I know. It's just tough when others are so stressed that they just get more stressed when it looks like I'm not exactly following the treatment that they (and all their doctor/surgeon friends) seem to think is correct! You're totally right, though! She will get over it. She seem to not mind 'heated discussions' that go nowhere. She even had the nerve to wonder why I was getting upset. *sigh* I just have to keep saying that she means well... and maybe get tough and not let her go to ALL my appointments!!!!
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Big THANKS! to everyone. I'm learning so much here, and I really like knowing as much as possible before making decisions, so this is fantastic! I feel SO much better after checking in here. You all are the voice of reason, knowledge and kind support!
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kayb -- LOVE your information so much! I'm definitely looking forward to seeing the oncologist day after tomorrow. I want to make sure all aspects of this thing are known by me and taken into consideration by those who are advising me. I'm totally open to doing whatever works best and doesn't look like it's going to be a ton of trouble, but I guess most everyone wants that.
I was looking about here and it seems my ultrasound finding of a 3cm mass is kind of large-ish. The surgeon didn't seem to think a lumpectomy would be a bad idea. But I know that the area with cancer could very well be found to be a lot larger after they get in there and then do the pathology... So maybe shrinking the thing a bit isn't just good for cosmetic reasons? I hope the oncologist will be able to help me on that. I'm glad to be able to talk to him about Perjeta and if that would be right for me. I would HOPE that he would know about it and suggest it if it looked right, but it's always better to know to ask, just in case. --Many heart-felt thanks!
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I still haven't decided to let my sister come with me, although we are now speaking like normal humans again! Maybe. I know it would make her feel better. But if she gets all intent on surgery first, no matter what, I might get annoyed again! The doctors need to figure out what's best for me, and what I feel best doing, and not be confused by my sister supposedly speaking for me and muddying the water. Oh, well. Relatives! What can ya do? Hopefully, she'll behave!
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Hi April, I just wanted to let you know that I have been following your complicated progress, and I hope you get the answers you seek from your oncologist and make a huge leap forward so you sister can give you a break and so you have clarity.
My friend is going through rads right now after surgery. She is III negative, but she also had a 3cm mass, and she had 3 weeks of chemo before surgery. It shrank down to almost nothing! So, neoadjuvant therapy sounds like it could be an option for you, esp. with Her2+.
I am having a mastectomy tomorrow and am so nervous! I will check back in a few days to see how you are doing. Big hugs!
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April, your onc could be a tremendous help in assisting your sister in understanding the steps that are necessary before surgery. If you bring her with you, also, the two of you will be discussing the same information afterwards. Both of these aspects could go a long way toward bringing your sister onto your team, rather than leaving her standing on the sidelines, so to speak, endlessly cheering for a touchdown.
The downside of bringing her, of course, is that a good part of your appointment will (and must) be devoted to helping her understand the complexities of designing a treatment strategy.
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April, just don't go by yourself. It's all very overwhelming and it will help to have someone there with you. Maybe you can set some guidelines with your sister before going.
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katcar0001 -- OH, surgery so soon! Wow. I feel so SLOW with my treatment. No wonder my sister is freaking out!
I wish you all the best! Many positive thoughts and prayers. I hope it will be easy and smooth as possible and your recovery will be quick! And that your path gives you the best of results!!!
BrooksideVT -- Well, I'm hoping treatment course is at least resolved enough to start scheduling stuff after seeing my oncologist tomorrow! Since I think I'm HER2+, it seems that I am absolutely crawling at the speed of a snail! I have a friend who was diagnosed a week after me and she's also going into surgery tomorrow! She's just got a .4 cm, just Ductile and HER2- , though, so the course is a bit more obvious, maybe?
Well, my sister is coming along. Hopefully she will be good. She probably won't need a lot of explanation--she is pretty sure she knows it all! (Well--she's consulted all the friends she knows who are doctors or know doctors or who had bc or know people with bc!!!) I do appreciate the enthusiasm, but I just like to make sure I know what the doctors who are treating me recommend!
Nash54 -- Thanks. I wrote her a message (face-to-face seems to be a little tense these days!). Hopefully she'll not be offended and try and behave (since she's insisting on coming). I am glad she's so concerned, of course.
kayb -- My sister took notes during my surgical consult appointment. I definitely was too frazzled to take notes, so this was good. Bad was that she hasn't shared said notes with me! Ah, well.
I definitely need to make a list. My head is still spinning a bit so it's hard to concentrate. I mostly need to know what treatment he recommends. If he's all on board with going to surgery asap, I'm all on board, but I want to run the Perjeta thought by him. And I do worry a bit about shrinking my tumor a bit, because it might very well be bigger once they get in surgery--and once they look at the pathology!
I'm having a bit of a hard time focusing beyond the immediate next step...!
But yes, I need to ask about dangers of having chemo before.
I fear my sister is thinking I'm going to be totally wrecked by chemo... which is not helping me stay positive. She's had one too many friends have some very poor outcomes (some bc some not). Ah, well.
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Thank you all for your continued help and support!!!
... if there's another 2 weeks or so to wait for surgery... is that going way too slow??? Not sure I have a choice...
Might not matter if chemo first is recommended, of course...
yikes...!
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April, your sister sounds amazing--what a ball of energy! Sounds as though she probably has a huge pile of info to sort through. Maybe she needs that onc appointment more than you do? Boy, will he have his work cut out for him! As Kayb suggested, please do be certain you bring a list of your questions, so you can sneak one in every so often. And do not leave until you and your sister are both satisfied that you have all the information you need. Then a nice lunch!
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Good luck today April. I am praying that you and your sister will leave this appointment knowing exactly what to do and why, as well as, how long the processes can take place safely.
I agree with Brookside, go enjoy a nice lunch or dinner and be sisters. I never had a sister and I always felt that would have been nice during my journey.
Keep us updated. HUGS!!!
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I hope you got all your questions answered today April.
Keeping you in my thoughts.
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BrooksideVT -- My sister is too much of a dynamo. No wonder I tend to sit back and let her do the leading (and I'm a year older than she is, too). She sat right by the oncologist and he was pretty much talking to her more than me through the whole hour or more! *sigh*
She has also already set up a 2nd opinion with an outside-KP onco up at St. John's (in Santa Monica--where she lives--about an hour from me). *sigh*
And she's asking me to think about switching insurance, since it's December, so that I maybe can go to a bigger center than KP or to specific doctors...!
I actually had a long list of questions and told her to wait until I got them covered... but that lasted about 2 seconds once we got into the examination room. *sigh*
I think I'm just go to give up and get walked over... and then make my own decisions. I really haven't see any reason to change everything around. I don't think my case is all that uncommon, or tricky, requiring the best of the best. And getting all that doesn't necessarily help (I've seen it back-fire, too.)
jbdayton -- Heh. Well. I was being pretty much a rug. But I got my questions answered, I think, even if my sister started running the show again. I had a CT scan afterward, since the onco put a stat on it, I just walked in for that. But after THAT, I met up with my sister for dinner. It was nice. Although she continued to call up people and arrange for that 2nd opinion. *sigh*
SlowDeepBreaths -- Thanks!!! So far, so good. The onco was very up-beat, which is reassuring, even though I'm sure he's like that with every one.
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Oncologist's Recommended Course of Treatment (and so far, what I'm going to do unless I get further strong-armed by my sister!!!)--
Neoadjuvant Chemo to shrink tumor and make surgery easier (lumpectomy).
TCH in 6 cycles with Neupogen prophylactic.
Surgery (lx) 3-4 weeks after chemo.
Then Herceptin every 3 weeks for a year with Radiation.
Femara for 5 years.
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It sounds pretty typical. Is it???
I asked about Perjeta, but onco said it's usually used with Adriamycin and he said he doesn't like the risk of serious SE (cardiotoxicity and rare risk of leukemogenesis).
Does that seem right?
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It sounds like your oncologist is not familiar with the current recently approved protocol for Perjeta - it is not used with Adriamycin. I am linking the information from Perjeta's website - it is given neoadjuvently with Taxotere and Herceptin actually, which is the regimen he is recommending. If this is really what he said that is a bit troubling. Many oncologists do not like to give Adriamycin concurrently with Herceptin due to the potential for cardiac issues from both Adriamycin and Herceptin, so they use a regimen called AC-TH (Adriamycin/Cytoxan, then once that is finished Herceptin and Taxol are given), is there any possibility this was what he was referring to and not the Perjeta?
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Hi April, wow, I know this is all very overwhelming. I urge you to seriously consider SpecialK's post. I am on that protocol and am HEr+. My onco is one of the best, they did FISH test & we knew right away about Perjeta/Herceptin. I just completed my chemo and it shrunk my tumors to nothing. Powerful medicine!!! My surgery is on 12/17.
I know this is hard and you want it over, but a second opinion with another onco is a good idea. Take the time now, I just do not want you regretting it later. Kellogg knows her stuff and you can trust her to be looking out for your best interests.
BTW, my first impulse was the same, get it out of my body!!! Best wishes and hugs
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I did TCH plus Perjeta - do follow up with your onc about the Perjeta. Like Bippy, after one round of chemo I could feel my tumors shrinking and after 3 rounds they were undetectable via ultrasound.
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SpecialK -- I'm pretty sure he said Perjeta was used with Adriamycin AFTER (looked at notes, not sure what after he meant, but thought he meant after surgery!) and therefore no Perjeta, just TCH. I asked specifically about Perjeta and that's how he answered...!
Now I'm confused. I guess it's a good thing I'm getting another onco consult/ 2nd opinion on Monday!
I'm at KP so I can't go to just any onco... but I could change providers, although that would mean more work. Should I try to find a different oncologist within KP if the current one is anti-Perjeta in my case? (and you wouldn't be unduly influencing me in any way--I'm just getting input, which is SO important!)
bippy625 -- We have similar cancers, at least as far as the ER+/PR-, HER2+ goes. My tumor is bigger, though... Is there a reason you're doing a mx and not a lx? Will you be skipping radiation that way? Did you do a SNB before chemo? *sigh* So many questions STILL! I was hoping to settle on a particular course...!
The HER2+ makes me worry that I'm taking too much time... It's been a few weeks since diagnosis, and it still takes time to start things rolling even AFTER I figure out what that will be and ... if I have to run around looking at new insurance or new doctors... that will delay things. AAAAGGGGH.
I didn't THINK I was so concerned about the timing, but as time passes, it worries me more and more...
CassieCat -- Perjeta, too. And no sign of Adriamycin...! I wonder why my oncologist was anti-Perjeta... and said it was because of the Adriamycin??? Geesh. Why did you go with neoadjuvent? For the Perjeta? or other reasons?
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MORE CONCERNS ---->>>
Tumor size and lx vs mx ---Apparently my lump is big for a b-cup and might end up looking pretty deformed if I got a lx. My SISTER was pretty emphatic when talking to the surgeon saying "we don't care about how it looks afterwards!!!" Which was pretty annoying. I tried to tell surgeon that I was concerned about prognosis first and cosmetics second, but cosmetics was still in the picture. So now I'm wondering if this cut me out of any meaningful discussion about mx and reconstruction being a better option cosmetically??? I kind of DON'T worry too much about deformity... but, really, who wants it if it can be avoided?
--I guess if I'm dong chemo first, I can sort out the surgery later...???
Anyway--that was the main reason for neoadjuvent... to shrink the tumor for better lx result.
But I'm thinking neoadjuvent has some other things to recommend it. More, if I actually get the Perjeta! Are there reasons for NOT giving Perjeta? I'm not mets (as far as I know!). But there is the problem with definitive staging and the SNB...
I got mixed messages on Chemo, too. Oncologist seemed that it was a given. Surgeon said it would depend on the path after surgery! But then she said I'd probably have chemo no matter what!???? Huh? Is chemo because of the HER2+ ???
I asked oncologist (I'm at KP, SoCal, Sand Canyon) about SNB with neo-adjuvent. He said my ultrasound had r. axcilla as normal. But that won't pick up microscopic, right? Surgeon said SNB could be done with Chemo, but Oncologist said he didn't think it was necessary... Does that sound right???
I seem to be low risk for BRCA... so they aren't giving me any genetics test... but BRCA can show up in people without obvious indications. Should I just go with the NO on genetics test?
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THANK YOU, everyone!!! I couldn't do this without you! There's just so much to know, research and consider. I'm trying to read up, but it never seems to be sufficient... You all are wonderful and invaluable!
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Hi April,
I may be overstepping boundaries here so feel free to say so if I have. You seem to have concerns about your sister's role in all of this. She is doing this out of love, no doubt about it, but at the same time you seem ambivalent about her steam rolling right over you and running the show. Yes, this can be overwhelming and it can be tempting to sit back and have someone else drive the bus, but ultimately it's you that is going through this and IMHO, you need to be the bus driver. Forgive me again as I know there are people who are comfortable letting others drive the bus and if that's ok if you want it that way. I don't know much about HER2+ , so no comment there, but second opinions are always a good thing.
Caryn
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I did chemo first in part to help ensure clean margins when it was time for surgery. My surgeon didn't want to do surgery and then have to have me wait to recover before starting chemo. I also had one node involved, so I think the idea was to try and stop everything in its tracks as soon as possible with chemo. Other than that one node we didn't see any spreading.
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April, SpecialK is always up on the latest with Her2 and has been so helpful to many of us on these boards. She gives excellent advice. I'm really surprised that Perjeta wasn't recommended.
As I've mentioned before, I was in the middle of treatment when Perjeta was approved, so I didn't get the benefit of the drug. I'm not sure that KP is always up on the latest treatment. To get around this, I got a second opinion before I even consulted with my KP MO. The first KP MO I met with didn't even want to hear the second opinion. He refused to speak to him, or hear about what was suggested. My second opinion MO recommended the KP MO I ended up using. They had worked together before, and the KP MO was more open to collaboration with my second opinion. Honestly, I really wanted to go with the second opinion MO, but I had KP and that wasn't an option. So I did what I could to work within the system.
I had an unusual case due to the fact I had two tumors with different pathology. One was Triple Negative and the other was Her2+++. My tn tumor responded VERY WELL to TCH, but my Her2 tumor DIDN'T. Unfortunately, I was only able to have four treatments due to pre-existing conditions, so we have no way of knowing if six would have made any difference. I was also left to wonder if the addition of Perjeta would have made a difference.
Your sister is looking out for you and that's not always such a bad thing. With all the info coming at us in the beginning, it's good to have a second pair of ears. If it were me, I would take the advice given above and get a second opinion with a treatment center that is dedicated to BC treatment, and if you have to work within the KP system, find someone that will be open to working with your second opinion. Take advantage of your sister's "energy" and maybe let her do all the leg work - then take control when you have all the info.
Hang in there....the beginning is the hardest part. Once you have a treatment plan in place, it gets easier.
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