In the mushy middle - Different Dr. opinions
Hello all ! I would like to hear from anyone that may have faced a similar dilemma. I am in a situation that appears to be an extreme case of good news/bad news. First the good news - very tiny IDC tumor (with extensive DCIS), node negative and nice clear margins post my lumpectomy. Now the bad news - while the tumor was tiny (4 mm), it was deemed "aggressive" - highly Her 2 positive (ratio of 10 confirmed by FISH), weakly ER positive and PR negative.
I have one oncologist who wants to "play it safe" given my age (evidently young - 43) and my health (good) and go for broke with chemo, radiation and a year of herceptin. I have another who thinks that chemo would be "over the top" given the small tumor, but interestingly, thinks giving herceptin for a year w/o chemo (despite this being "off label") to be the right course of action.
The only things these two seem to agree on are a) the Oncotype DX test is not warranted as it will come back high due to the ER/PR and Her2 status (something that Genomic Health has confirmed for me), b) radiation is a given, c) the genetic test is warranted, and d) herceptin would be a good thing (either with or w/o chemo), and e) my case is not "text book".
Pretty clear this will come down to my call. Anyone else out there who has faced something similar ?
Thanks !
Jill
Comments
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I also recieved conflicting opinions on the merits of chemo. My advice would be get even another opinion from a different institution if you are undecided.
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You might ask them to explain the risks and benefit of chemo for your situation.
I haven't changed my diagnosis line yet because I can't hardly believe this, but the result of my surgery pathology is that my actual cancer has a maximum dimension of 0.8 cm plus a cystic component and IDC. So I've moved from Stage II with a 3.5 cm cancer to Stage 1. That makes my diagnosis almost the same as yours except I'm ER-. Clear margins and negative nodes.
I'll be seeing the oncologist for the first time on Monday, but I've been on a couple of on line adjuvant treatment calculators. Unfortunately Herceptin hasn't been around long enough to be included in their calculations. The adjuvantonline.com calculator says that with no chemo for this cancer and my age (56) there is about a 5% chance of dying from cancer and an 18% chance of relapse during the next 10 years. Having chemo (not including the effect of Herceptin) cuts both of those in half.
The other calculator:
http://cancer.lifemath.net/breastcancer/therapy/index.php
says that without chemo my life expectancy is reduced 4.8 years and with chemo (again not taking Herceptin into account) it is reduced by 2.4 years.
So you can see why their opinions aren't clear. Is it worth the side effects of chemo when probability of cancer recurring is small and the probability that such a recurrance will kill you is even smaller? And it doesn't help that there isn't enough history with herceptin to include it in the calculations.
The decision on whether the extra benefit is worth the chemo really should be yours. They should give you the information to quantify what the benefit is so you can make the decision that is right for you.
I'll be making this "mushy middle" decison myself in the next couple of weeks too.
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I am Her2 positive and my oncologist sent for the Oncotype test back in May in spite of it. He said my results could end up anywhere on the map. My score came back at 20, 12% chance of recurrence in 10 years. He very strongly does not recommend chemo. He said I am fine to seek a second opinion, but he said he'd fall off his chair if the 2nd opinion differed from his. My largest tumor is .4 cm, which he said is the main reason for his recommendation. If it were 1 cm or over, his advice would be completely different. He thinks it is unwise for oncologists to assume high recurrence rates for HER2 positive tumors because so many other factors weigh in to the risk. And he thinks it is very unwise for Genomic Health to make predictive statements about what your outcome might be given the HER2 positive status.
I just met with my onc on Monday and asked him all these questions again to be sure I've made the right decision to not to chemo. He was very emphatic about what I just wrote.
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Hi,
I also had a 4 mm IDC although I had LCIS, not DCIS like you. I was not Her2 positive, so our situations are not exactly parallel. I would be curious if your pathology report showed any signs of vascular invasion? The two oncologists I saw indicated that my IDC was too small to warrant having the Oncotype test, and they also mentioned that the other predicting tools they use to determine whether or not there would be a recurrence did not really apply to a tumor as small as ours since there is a blanket category for one cm and smaller. Before I knew my Her2 status, we discussed taking herceptin alone without any other chemo, so my oncologists are in line with the recommendations of your second oncologist in that respect. Good luck to you.
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Hi Jill,
Our dx's are similar, but I was only a Grade 1 (well-differentiated). My tumor was .9 cm - and node-negative. My Oncotype DX score was 22..........and my oncologist at first said I wouldn't need chemo. But when my Fish report came back Her2+ he changed his mind. He consulted with other oncologists on some board, and they agreed with him that I'm not "textbook" either but that my risk for recurrence would be cut in half by starting on Herceptin. He said Herceptin given alone hasn't got any studies to back it up, so he put me on Navelbine for 4 months (because it wouldn't hurt my heart or cause baldness.) He said there's a study that shows Herceptin works if it's given in conjunction with ANY chemo. I was unsure about that - and got a second opinion from another oncologist who agreed with him. Then I got an opinion from a family friend who's sister is the head oncologist at a hospital in California - and she agreed - because my tumor was close to 1cm it changed everything. Then I even went online and asked for an opinion from an oncologist there and he also agreed. Here's the link to that free web site:
http://www.askanoncologistnow.com/cancer/question/
I hope this information helps you. You could also ask questions over at the Her2support web site - the women there are very knowledgeable - here's that link:
Good luck with your difficult decision!
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Hello Everyone !
Thanks for the responses, they were very helpful. Got a couple of additional clarifications before I tell you where my local oncologist appears to be coming out at this point.
First, in regard to Oncotype, the reason it is not being sent in my case is not solely due to Her2+ status but also to ER/PR status. Christianne is right in that there are many factors that go into it. However, Her2 overexpression is one that tends to send the score high, and ER/PR "positivity" are two of the factors that bring it back down. In my case, not only am I highly Her2 positive, but weakly ER positive (only 22%) and PR negative. So, the likelihood is high we know that answer already (it will be intermediate to high). This is one of the few points both oncs have been consistent on.
Anyway, based on the discussion with the second oncologist, my local oncologist (who I do trust), appears to be going where Swimangel's landed. She is very uncomfortable with giving herceptin alone based on the lack of clinical proof (her exact words were "why risk your heart for something you don't know for sure works"), but is comfortable moving to what I call "chemo light" - one drug for four rounds instead of the "works" (although she is leaning toward Taxol, also to limit heart exposure risk) and then giving Herceptin. She is also adamant that given my age, this will significantly reduce my recurrence risk down to single digits. She is quite passionate about this. You can tell I asked the % reduction question and they are similar to the stats from Adjuvant in Blue Dasher's note although relapse risk was higher due to my age. She also admitted that Her 2 status and Herceptin cannot be modeled yet.
So, here is the plan - I am STILL making them confirm the pathology for sure at a place that only looks at breast cancer (really want to make sure they tested the right portion given the size of the IDC relative to the DCIS) . You can tell I am very stubborn. IF the pathology is confirmed, I am going with my local onc.'s reco for "chemo light" followed by Herceptin. IF the pathology is not confirmed (my last great hope) and/or we can show they tested the wrong portion, then I am back to base plan of radiation and Tamoxifen.
By the way, for all us ladies that are not "text book", I told both docs that they better get used to it. In all the reading I have been doing, it appears we are both benefactors and "victims" (poor use of words), of technology. Basically, the advances is mammography are such that they can catch these types of cancer so much earlier than they used to (one of my onc's said even 5 years ago they would not have caught mine), that the detection has gotten ahead of the treatment protocols. In other words, by the time they usually would have caught a tumor like mine, it would have been "big" given the aggressiveness. So, now they are in a quandary as to what to do with "small but aggressive" tumors - do you put it in the small camp or in the aggressive camp ? This is what causes the dilemma. While this is largely philosophical discussion, the point is that with advances in detection, there will be more of us over the next several years, and I predict that one day we will be "text book". In any case, I personally owe a lot to those advances in mammography.
Anyway, thanks for all useful information. I will let you know where it nets out !
Jill
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I really appreciated your previous post with your explanation of what you are finding out as you go along. I have to agree with you that we are indeed in this early detection era where there is no established protocol as of yet. You put it well--are we in the "small camp or the aggressive camp". Thank God what we have was found early.
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Hello again. The scientist in me could not resist checking the "ask the oncologist" link my question. Here is the answer below. It is about as clear as mud, but between the lines, I get the impression that he would follow the NCCN guidelines - however, as I read them, there is a still and out for small, aggressive tumors. This is an definitely an "art".
Anyway, here is the answer I got from them.
Hi. This only goes to show that the field of oncology is indeed still an inexact science and this difference in opinion among oncologists is common. Though their opinions differ, they both have valid points and presently there is no right or wrong answer. Given the overall situation, your young age, and of the tumor being small (less than 0.5cm) but is positive for a Her2 (which is a marker for aggressive behavior) chemotherapy plus herceptin may indeed be of benefit in reducing recurrence or spread. However, this benefit may be small, and can be equalized or negated by the side effects of chemotherapy. This approach by your first oncologist may not reflect international guidelines but has a good theory behind her recommendation. Your second onclogist may be adhering more to the guidelines (NCCN) in which tumors less than 5mm, regardless of Her2 or ER/PR status, would not derive significant benefit from chemotherapy. IN your situation of 20% staining for ER, you may derive benefit from hormonal treatment such as tamoxifen. I have enclosed the NCCN breast cancer pdf file for your reference. Regards. -
Jill that's a similar response to my question - that oncology is part art as well as science. No matter what we do - it's a game of chance in many ways............so for me, I wanted to err on the side of gaining as many "points" in my favor as I could. Have you decided yet what to do?
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A concise paraphrase of the ask the oncologist answer "Welcom to the mushy middle."
The other thing that puzzles me - I guess it is part of the art of oncology: there are loads of guidelines with neat little decision trees about breast cancer treatment - but they all seem to get to the point where they say chemotherapy is needed with trastuzuma but there are lots of chemo versions and they don't give any guidance on which one.
I'll see what the onc says on Monday.
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Hi all,
I can only give you my own experience: I was diagnosed with a highly aggressive, huge, node-positive triple negative tumor at the end of February this year. After five months of chemotherapy, the tumor had shrunk to .5 mm, and the nodes were sterile.
My medical team gave me the choice of radiation, double-mastectomy with immediate reconstruction or ... nothing. They tell me that although radiation will most likely kill off any micromets that could still be lurking in the chest area, the bilateral mastectomy won't improve my survival chances from THIS particular cancer.
However, I've chosen to do radiation, have the bilateral, and go with the Avastin as well. I figure I'll do anything and everything to prevent not only a recurrence, but also a new primary. The hell with cancer, sez I, let's fire the big cannons!
Love,
Annie
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Annie, did you mean to post on another thread? I don't see how your answer is relevant to the question here - whether to do chemo, just Herceptin or nothing with a small Stage I HER2+ cancer.
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Hi Ladies !
Now... for even more confusion into the matter, I met again with my oncologist on Friday over the phone. To her office's credit they are nagging at the folks who are revisiting the pathology such that we can move on. That is the last key of the puzzle for me. If I am going to put my body through all of this, I am going to make DARN sure the pathology was right since that was what is driving the "aggressive" camp stuff. Swimangel - I will post when I finally get this wrapped up, and I thank you for asking. My DREAM is that I come back and say "Ladies, they made a mistake !". We can dream, can't we ?
Anyway, I told my oncologist that this on-line guy said she was not following the NCCN guidelines, and did she feel comfortable with that. Well, she insisted she WAS following the NCCN guidelines - and follows them regiously. I almost cracked up - and NO, I am not doing this just to stir things up as I really wanted an answer to this. So, even the interpretation of the guideline is up for debate. To be honest, I had the same question as to whether my doc was really not following the guideline because the decision tree for small tumors says that chemotheraphy could be appropriate for :
- 0.6-1.0 cm OR
- moderately/poorly differentiated (I interpret that to be grades 2-3) OR
- has "unfavorable characteristics" (could this be high Her2++ or Oncotype DX high ?)
Did you notice the "OR" between these statements ? This is why I think my doc thinks she is following them. AND, I could not resist following up with the on line doc to ask if my interpretation of these guidelines was correct or not. So far, he has conveniently not answered, and I am not sure he will. If he does, I will let you all know. (If we have to do this, might as well get a little amusement out of watching the oncologists battle it out). Kidding on that. But, on a serious note, at the end of the conversation she told me that she saw a patient that day who had had a small (a little larger than my) tumor but not quite as aggressive as mine that she treated a couple of years ago and decided not to treat "assertively" at that point in time and it had unfortunately reoccurred. While I recognize this could be luck of the draw and I don't think her objective was to scare me, I got to give her credit for knowing what button to push with me.
Bluedasher - I would LOVE to hear what your onc. says on Monday. While it might not change anything for either of us, it is always interesting to compare notes. Everyone on this board has done a lot in terms of calibrating. It has helped me ask the docs the right questions. And you are right in regard to the darn decision trees on types of chemo. I wish there was more information as to what drives their decision where in terms of what to use (other than Her2 status).
Jill
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I was puzzled by where you were seeing the "OR"s but figured it out - you are looking at the hormone positive HER postitive decision tree while I've been looking at hormone negative HER positive. My chart just says no adjuvant therapy for tumors less than 0.5 and node negative. For my tumor of between 0.5 and 1.0 cm it says consider chemotherapy (but doesn't say anything about what to consider).
For you chart with the ORs, it says Adjuvant therapy +_ chemotherapy so maybe the on line onc interprets that as the minus chemotherapy when the cancer is less than 0.5 cm (which would match my chart) and the other feels it gives leeway. That NCC guideline also doesn't say anything about age other than for those older than 70, but the risk goes up the younger you are.
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Hi Bluedasher -
I can tell that you are as "thorough" as I am on this stuff. Nice to find a kindred spirit.
Where I found this was actually in the Patient and not the Doctor guide. Specifically it is in the NCCN Breast Cancer Treatment Guidelines for Patients, Version IX/July 2007. I tried to attach the link but for some reason, it is off the NCCN web page right now (figures - the one time I actually needed it). However, if you have a hard copy, I am specifically referring to the decision trees found on pages 56-57. You will find the "or"'s there. I found the patient guide to be a bit more pragmatic.
However, bottom line is that I have finally relented on there not being a pat answer to this. This was a very hard admission for me given that I am a scientist by training. We scientists are trained to believe that there is always a correct answer if there is enough data !
So, this is going to come down to a very personal call. There are potential consequences on both sides of the question. Some women are of the mind that recurrence is the highest consequence and will do what it takes to prevent that even if the benefit is only 1%. Other women question the benefit chemo will give them in the grand scheme and are more concerned about the longer term risks of exposing their bodies to this treatment.
Given the mushy middle of my situation (and apparently yours), I have done what I can to gather enough data to bring things to "center" as much as possible. I don't care to be extreme either way. So, where I am netting out is that if the pathology is confirmed, there is enough data for me to warrant a "lighter" chemo regimen (mainly such that I can get the herceptin in a proven clinical setting) to significantly affect recurrence risk. I am not willing to risk my heart and/or other long term side effects for the "works" in terms of heavy up chemo. Nor am I willing to risk the recurrence risk from doing "nothing". I don't like it, but I found my middle ground.
That said, my onc. keeps telling me that the thing pushing her in this direction is my ER/PR status in conjunction with the Her2 status. While I am ER positive, it is weak (22%). Given you are ER negative, you are likely to hear something similar.
Anyway, let me know if you find that resource. If not, I will continue to look for it on the web site. Hopefully it will come back up.
Jill
P.S. On Medscape there was a very interesting update at the last NCCN conference about Her2 status and Oncotype. The conclusion presented was that Her2 positive cancers would not likely benefit from Oncotype given the recurrence score was likely to be high.
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Jill, I have seen the NCCN patient guide. I looked at it a couple of times and then the link stopped working for me too. I guess they have taken it down or the link got broken.
I'm an electrical engineer - maybe that is a slight advantage as we are taught that there are always trade-offs and there isn't always a "right" answer. I like to analyze as much as possible and then balance the trade-offs.
There are a couple of slide sets on the adjuvanonline site summarizing the results to date of studies in progress (in 2005) on herceptin. Here is a link - the slide sets are the second and third links down on this page, you may need to be logged in to get there.
https://www.adjuvantonline.com/resources.jsp
One thing I'm pretty sure of at this point is avoiding chemo with anthracyclines like Adriamycin (doxorubicin) because of the cardiac effect. Herceptin can have cardiac effects too but what I've read says that those are reversable once one is off Herceptin. I don't want to take Andriamycin then not be able to take Herceptin because Andriamycin has damaged my heart. And I don't think the mushy middle justifies treatment with something that might do long term damage to the heart.
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Jill I am very interested in learning what "light chemo" means to you and your oncologist. My oncologist spoke to a few colleagues before he decided to give me Navelbine. I was nervous about this until I got a few separate opinions - because the Herceptin manufacturer's web site doesn't talk about this "light chemo" treatment at all. Still the oncologists all told me the same thing - that there is one study (Hera?) that shows Herceptin given with ANY chemo is equally effective. I wish I could find that study. Anyway - I hope they are studying the use of Herceptin alone in Er+/Pr+ Her2+ early stage bc patients............I really hope that they'll discover it works just as well alone as with other drugs - but maybe you have already researched that?
Edited to Add: Bluedasher, looks like we posted at the same time. I'm going to look at the link you just posted. I just wanted to say - the number one reason my onc chose Navelbine for me (every two weeks for 4 months given with Herceptin) is because it wouldn't hurt my heart. He has a huge practice - is very highly respected - and has YEARS of experience, so I really trusted his opinion. It also helped me so much that the head oncologist at a California hospital (friend of the family) also agreed with his choice of Navelbine for me. Still - I suppose no matter WHAT our treatments - the worry will always be in the back of our minds that we will get a recurrence. I think my worry is driven by the fact that I was at such a LOW risk of getting bc in the beginning - and I've been "falling" into all the low risk categories since then (including the Her2+ risk) - that I worry that all my treatments will be for naught.
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I met with my oncologist today. She confirmed my mushy middle status. The choice between doing chemo and not doing it isn't clear. To get Herceptin, I need to do some form of chemo. I also learned that my pathology results said I was 100% HER2+++.
She suggested the same chemo that was thinking of: TCH (taxotere, carboplatin, herceptin). six courses of three weeks and then herceptin for the rest of a year. I'll be taking the herceptin at a once every three weeks dose. And the reason was the same as what I was thinking - for a Stage I cancer, the benefit of chemo isn't worth the cardio risk of AC-T or FEC chemo. At least cardio problems from Herceptin are reversible.
She did also tell me that I was eligible for a clinical trial where they add Avastin, but I didn't think it made sense in my case - again the risk vs benefit wasn't worth it and she agreed, so I'm not doing that. (Of course they only add Avastin for half the study group but to join the study you have to be willing to be in the Avastin half.)
I decided to do TCH. Part of what decided me is that the therapy doesn't have much in the way of long term side effect risk. And I wouldn't want to not do the therapy and then have breast cancer come back and wonder if it was because I decided not to do chemo. Lowering the recurrence rate is worth 5 or so months of discomfort to me. I was also influenced by the possibility that the cancer size was reduced by the VAD biopsy and may have been over 1 cm before VAD.
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Blue Dasher and Swim Angel -
I find it comforting that a couple other "mushy middle" ladies ended up in the same place as I did. (I should find out my final pathology today, but my onc. has already ordered the port placement).
Bluedasher - As usual, your course of treatment and rationale was well thought out - and mirrors much of my own reasoning . The only read difference I see is your hedging on the biopsy reducing the tumor size. Makes a lot of sense to hedge your bet on this. Good luck with your regimen, and thanks for sharing where you came out !
Swim Angel - My onc. mentioned the same thing about clinicals showing herceptin working with any chemo. Appears bluedasher's came out the same place. I have not found that study, but will keep poking at it.
Jill
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Jill,
Two years ago, I was where you were, except older than you. And here's a little different spin. As you can see from my signature, I'm also one of those in the middle. I really hope I didn't fall through the cracks, but both oncologists that I saw (and am still seeing one of them) said the same thing....that the effects of chemo didn't balance out to the good side of progress for me. With Femara only, I stand a < 10% chance of reoccurance in ten years...........at least that's what the stats say. So far, I'm cancer free.
Just so you know, I did argue for chemo and Herceptin, but at the time, it was for much larger tumors than mine. I am also one of the "lucky" ones whose tumors were extremely tiny. I just hope that "they" know what they're talking about, and things continue as they are................for all of us "mushy middle" ladies.
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Jennifer -
Welcome to the mushy middle ladies ! Thanks for your perspective. This was similar to what I got from one of my oncologists but not the other. Also, for perspective, I have actually been arguing AGAINST having to take chemo, but my one oncologist keeps bringing me back to it. Honestly, while I can be very stubborn, she has been very clear on her rationale which has has a lot to do with my age and my ER/PR status as well (she told me she is "essentially" treating me as ER negative given it is relatively weak). Even the second more conservative oncologist has leaned in a little on this as well when given my local oncologist's point of view.
In all, I am grateful I have thse folks trying to look out for my benefit, even if I don't like what they are saying all the time.
Jill
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I get it now. I do know an acquaintance that was diagnosed last year, and her onc. wanted to give her chemo. She argued against it, and she won. She did have rads (had lump.) I don't know what her pr/er or Her2 status was though, as she and I don't get to talk to much anymore (I've moved, then quit working in the town where she lives). I do know that she did have to have a PET and MRI to make sure that no cancer was found anywhere else. Evidently, those came back clear, because her daughter told me that she didn't have to have chemo.
Maybe your onc. will back off a little if you ask for those scans? I don't know....things are changing so fast in the cancer world, yet I can see that they STILL don't have a clue as to what to do with us "mml's"
!Here's to your continued good health.
Jennifer
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Hello all !
Well.. I never suspected that when I started this post, I created our own category - the MML's ! Got its own acronym and everything. Maybe breastcancer.org will give us our own grouping (kidding).
Anyway, I STILL don't know the outcome of my pathology - no idea what is taking so long. My oncologist here is getting really exasperated. But, to keep things moving we are moving forward with port placement. I am REALLY tired of waiting on stuff. I think that is the worst part of this. (Bluedasher - Think we will be in Chemo at the same time ?).
Jennifer - Thanks again for your advice on this. In fact, I have had so many scans I practically glow by now. My doctor did ALL the baseline tests. I had a CT scan (nothing quite like a barium smoothie in the morning, but the CT was clear !), a bone scan (a little early arthritis - bummer), the MUGA test (60% - aced it !), a PET scan (no results yet), and the genetic test (again, more waiting). With all the radioactive junk coursing through my veins, I think that if you turned off the lights, I could be the human night light. Practically running out of veins for them to stick at this point (given I am limited to my left side only). But, with all the complaining I am doing (have you figured out yet that I am not a good patient ?), I do understand getting a baseline is important. For every argument I throw out about chemo, my doctor starts in on my recurrence risk stats, which is why I finally relented. However, I do take some solace in that I moved BOTH docs toward the center in terms of treatment. The fact that I got the aggressive doctor down to "chemo light" is a bit of a victory (and I backed it up with clinical arguments). To be clear, this is my call. I CAN beg out if I wanted to. But, not sure I want to live with the gnawing fear in the back of my head about recurrence given the stats in this case. If I were highly ER positive, I would go to radiation and then take Tamoxifen in a heart beat and never look back. So, I found a regimen that in my mind will give me the right benefit for the "risk" I am taking. (Down to single digits in recurrence risk !). BTW, I am partial to your name. I have a daughter named Jennifer, though she prefers "Jenny" !
Jill
P.S. Bluedasher - a confession - I am also an engineer - although Chemical. However, I consider myself more of a scientist these days as I spent the last twenty years in Product Development. However, I knew there was something similar in our backgrounds. My onc. told me engineers make the WORST patients ! (I am not sorry for that).
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Hello, everyone !
As promised.. here is the outcome. Unfortunately, my dream did not come true. The re-read on the pathology made it clear they evaluated the IDC portion and the markers were almost identical to the original read (so, no more denial for me). In what may be a weird turn of events, however, it appears that my tumor size may also be larger than originally thought, although there is really no way to find out. There is some indication that during the biopsy that the radiologist kind of "tore" apart the main IDC part, leaving everyone kind of puzzled as to how big it was altogether (how is that for mushy middle ?). The best they can do is add up the pieces, which is also not real definitive. To make matters even more confusing, the pathology does not state how many cores were evaluated (which really upset my onc. a lot). This could be also one reason why my doc was relatively aggressive. She had to be to account for "worst case".
Anyway, while not the news I hoped for, I am relieved to finally have a plan in place. I am getting the port put in Oct. 20 and see my onc. again on Oct. 22. From there, we are into "chemo light" (likely four rounds of taxol - once every two weeks), followed by 6 weeks of radiation, followed by 1 year of herceptin. The only monkey wrench that could be thrown into the plan at this point is the outcome of the genetic test. I think I am due for some good news !
Anyway, I thank all the mushy middle ladies for their thoughts and advice through this. The calibration all of you gave me through this has been invaluable. Maybe I will see some of you on the chemo threads.
Jill
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My oncologist at the Mayo Clinic in Rochester, MN recommended chemo because he could gurantee that some cells hadn't gotten into the bloodstream. They are an hour and a half away and have a satellite clinic near my home. They made me an appointment with the oncologist there and I had to see his nurse-practioner first. The N/P was rude and arrogent, complaining because he had been overbooked with two new patients. He asked why I was there and I said to start chemo. He said "I haven't said you are having chemo yet." He punched in my numbers and told me chemo would be a waste of my time and that I must have misunderstood my oncologist. I asked who he had wanted me to to the Onco Dx test if I wasn't having chemo. His reply was that the oncologist must have misread the charts and been confused. Needless to say, I left and went back to Rochester for chemo. I couldn't believe a N/P would talk about an oncologist in that manner. I filed a complaint against him and then to make matters worse, when I got neutropenic fever, I called the same hospital I because it was so close to home) and when I asked to speak to a nurse or Dr., they gave me to this clown. I told him I was 5 days out of my first chemo and had a temp of 101.5 with tylenol. He told me to come in in the morning. Said I'd be fine. I didn't take his advice and went in anyway. All of my counts were zero. All I can say is advocate for yourselves.
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iowagirl -
Wow. What a terrible story ! I am sorry you had to go through all of that. But, I totally agree in what you are saying. I am finding that adovcating for yourself is not only appropriate but necessary. What I did not get into with all of these postings is my experience with the second more conservative doc. Her attitude was almost "cavalier" and the first time I met her, she was obviously reading my pathology for the first time in front of me. Because I knew my case so well, I actually pointed out things in the pathology to her that she overlooked. Needless to say, she lost a little of the attitude when she realized I knew more than she had given me credit for. That said, I still think her perspective was useful as it helped to calibrate my more "aggressive" doc. But, I would not see the "cavalier" doc again as I did not get the feeling she was really looking out for my best interest.
In any case, how are you doing today ? I did not see a signature line for you so I am not sure what you had. How are you withstanding your treatment ? Take care.
Jill
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iowagirl - I also had a bad experience with a nurse practitioner in my old onc's office; she was arrogant and insulting on several occasions and disagreed with my oncologist's orders to have my liver enzymes checked. That coupled with having to wait 2 hours in the waiting room just to be seen made me realize that, as kind and compassionate as my onc was, I wasn't really "working" with him, so I switched to another office closer to my house - the new onc kept the same drug protocol for me, and his nurses are wonderful. That said, I'm so sorry for the distance you need to travel!
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OH - and Jill - the size of my tumor was in the "mushy-middle" too. After my mastectomy, the pathology report said the tumor area was .9cm but it "might" be smaller because they couldn't be sure after the vacuum assisted biopsy. I imagine this discrepancy is more common than discussed. With a tumor under 1cm, I imagine it is possible that the biopsy would "suck" the entire thing out leaving a hole to be filled with scar tissue. So this radiologist recommended going back to the original mammo and mri scans to determine the size, which didn't give me much confidence at all. Still - both my onc's ignored that recommendation and zero'd in on the .9cm measurements found in the final pathology after the mastectomy. As said before, this is not an exact science, which makes our situation even more worrisome at times!
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Swimangel -
I hear you on that one ! I had a sterotactic biopsy and the "size" they have been talking about was from the "largest" singular piece recovered. As I do recall that guy taking several cores (although the pathologist neglected to say how many in his report - he just said "several"), this means it was a bit larger than what the "largest single piece" recovered. I now see why my onc. got so upset when she realized we don't know the number of cores. She even asked me at one point if I remembered how many he took. I told her it was around 10, but did not have an exact number. In doing the math after looking at the 15 slides, this thing could have been anywhere from 4 mm (largest segment recovered) up to about 1 cm. As you know that makes a big difference in oncology circles.
The more I have gotten into this the greater my respect for my local oncologist has grown. I have been impressed by her thorough but cautious approach and what appears to be genuine caring and a willingness to work with me to design the "right" treatment approach. Given all the horror stories I am reading about our medical establishment, it appears I am a bit spoiled!
In any case, I am glad you also found a doc that works for you. It really is so important.
Jill
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Someone suggested this thread to me in another forum and I am so happy to have gotten here. I too think I am in the mushy middle!
I just had a bi-lateral mastectomy after being dx with DCIS in the left breast. The size was too extensive for a lumpectomy so then I opted for a bi-later to be "safe". My nodes thankfully came back clear and I thought I was in the clear and just needed to focus on recovery from losing my breasts. Then WHAM! I went to my Onc to review my pathology report. They found IDC (very small .4cm) in my left breast along with the DCIS. I also found out I am ER+, PR+ and HER2+. I am also 37 years old which they keep tell me is young. Now, my Onc is recommending Chemo. I heard that word and have been so down ever since. My mom died at 38 from breast cancer. Also, I am not married and was hoping to at least have the opportunity (while still hard getting older) to have a baby. So, I went back to my Onc after I absorbed this information and he is suggesting: Taxol and Herceptin weekly for 12 weeks then Herceptin once every 3 weeks for a year. Then, Lupron for 2 years to suppress the estrogen production and then maybe I can have kids. From what I understand he is hoping this will not hit my ovaries as hard. Anyway, I don't know what to do or think.
I am in Houston and have a wonderful Onc and his office is wonderful (Baylor). However, I feel like here with MD Anderson in my backyard I should get a 2nd opinion there as well. BUT when I call them it sounds like it could be 2-3 weeks before I get in for an appt there. The way I understand it is that I need to start treatment as quick as possible. This Tuesday will be 4 weeks since my BLM.
Anyway, any thoguhts, suggestions, advice would be so appreciated. I am so scared about Chemo and the side effects and scared about making the right decisions on treatment.
Thanks, Cristl
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