HAPPY! Dr. Lagios and liver
So, for those of you who don't know, I had DCIS-MI and on top af that a suspicious liver lesion. Spoke with the premiere liver doc at my HMO today. He viewed my MRI and CT films of the liver, and strongly suspects it is benign. His reasoning is that my chances of metastesis with a micro are VERY remote, and I have no risk factors for primary liver cancer. Yes; I will need a check-back in 3 mo., and a couple liver blood tests, but he said he would be shocked if it was anything but another harmless hemangioma (blood cluster), as I and my mother have a history of them. Yah! Separetely, I spoke with Dr. Lagios. He concurs that my micro is the lowest grade, lowest stage, least aggressive it can be. Did say he thought my narrowest margin was less than the 2 mm my HMO said; still clean, though. Because of the micro, he advises the rads, but NOT the Arimidex. He could not have concurred more strongly that I do not need the SNB. Said he would not recommend it if it were his daughter. Agrees it is "standard", right now, but as my RO says, may not be for long, as it will invariably be negative. Puts my chance of nodal involvement at one third of one percent., not 5% like my HMO. The only thing I'm scared about now is the pre-rads mammo, because of narrow margins. If they see a calc outside the lumpectomy area, that would mean re-excision. I have no more breast left to give, and as that margin is by the skin, my BS said it would be mutilating. Still; have to do it in a couple weeks when my breast is less tender; then rads (short protocol). Almost home! Please send good thoughts for a clean pre-rads mammo! - P.
Comments
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Fantastic news and very deserving after all you have been through! Some of these tests we now have to endure put us through so much more due to false positives. My best vipes are sent to you for your mammogram. Let us know when it is scheduled so that we can "be there" with you. What is a short protocol for rads? That too is great news!! Have a wonderful evening after receiving so much good news today.
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Hi Percy, good to hear from you, and so glad that you got reassuring news from both the liver specialist and Dr. Lagios. About the pre-rads mammo--remember--if they see calcs outside of the lumpectomy area, they will biopsy again. They won't just do re-excision. Not all calcs are DCIS or cancer. And, you actually probably do have more breast to spare, if it comes to pass that you need re-excision. I thought that I had nothing left after three previous excisional biopsies prior to my diagnosis, and then I had three more surgeries. I don't have large breasts either. You've probably got more to spare, the question is, whether it'll be as cosmetically pleasing to you as before. I am troubled that your surgeon used the word "mutilating". Is that so? That sounds so harsh. We're still here for ya.
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Thanks, ballet. Yes; she used that word right after first results from lumpectomy, when I thought my narrowest margin was 2 mm, and thought I just had DCIS, before that was amended to a micro. I was asking her about a re-excision to get bigger margins, so I could think of not doing rads. It seems my narrowest margin is by the skin, and now Dr. Lagios sees that as less than 1 mm; still clean, but very small. She said taking more there would involve taking skin, which would twist my breast, nipple, etc. I'm hoping calcs and DCIS can't even be in the skin. The skin is, after all, not ducts, for ductal anything. Maybe Beesie knows about DCIS or DCIS-MI getting into the skin, or so close they would take skin.
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Yes, Beesie knows about this. it wouldn't be actually in the skin if DCIS, it would be in the breast tissue right by the skin, as you surmised. The breast tissue goes to the skin, and they sometimes "scrape" the chest wall with mastectomies to be sure to get as much as possible, but with mastectomies, a small amount of breast tissue can remain. Sorry to be so graphic. With lumpectomy (and even mastectomy for DCIS) they can do a radiation boost to the targeted area, if there is a narrow margin at the chest wall, and that can even be added onto the short rads protocol you are doing. Personally, I'd do whatever could to remove any areas, but I knew I'd have a not so great result, and I'm not single like you, etc. etc. But, as I said before, just wait for the mammo. It sounds like you might need the boost to the narrow margin, even if you don't need re-excision for (hopefully NOT FOUND) additional DCIS. Hopefully there will be no more surprises.
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percy, I'm glad that you got good news about the liver lesion!
As for the 1mm margin by the skin, that was the same position I was in after my MX. I discussed rads with my surgeon; he said it wasn't necessary. I really didn't want to have rads because of the negative impact to my reconstruction - and in any case in those days it was really unusual to have rads after a MX for DCIS, no matter how close the margins. My decision was to ask my PS to remove a bit of skin on both sides of the incision - from the pathology report, that's where my closest margin was. It meant that my final reconstruction incision is not as smooth as it would otherwise be, but doing that gave me peace of mind (and it turned out that the pathology showed that the skin was clean with no cancer cells).
I think in your case since you've had a lumpectomy and will be having rads regardless, the rads should do the trick.
As for the use of the word "mutilated", I think that's a relative and subjective term, and an unfortunate term. Too often I see women choose to have a MX because they are concerned that their breasts might appear "mutilated" after a lumpectomy, without considering that reconstructed breasts often don't look much like natural breasts either (and certainly don't feel like natural breasts) and that they may end up with much bigger scars from a MX than a lumpectomy. And with DIEP and TRAM and GAP reconstruction, you also end up with scars on other parts of your body. So which procedure has a bigger physical impact on the body and changes the appearance of the body more? To me, there's no question it's a MX vs. a lumpectomy, whatever the lumpectomy results might be.
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Thanks. Actually, he said the margin by the skin is 0.5 mm, so I am a bit worried about the pre-rads mammo. I can't believe I forgot to mention it, but Dr. Lagios said he saw 30 mm (3 cm) of low-grade DCIS in the lumpectomy slides, basically the whole lumpectomy, miraculouly with what he considers clean margins, though the one by the skin could possibly (not probably) have a "skip", with more outside it. He doubts that, but feels it doesn't need a re-excision at this point, and that rads would address that if it were the case. The HMO path had said 4 mm of DCIS at the greatest extent. A huge difference I'm going to need to point out to my MO, bringing her his path report next Tuesday when we formalize my breast treatment plan. I can't even see how that could have happened. I know pathologists differ, but THAT much? He's the DCIS expert, even my surgeon agrees, so I don't even know what to think about that. Thankfully, there is no disagreement that the micro had 4-6 mm margins. They both said that.
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Wow! 3 cm of DCIS plus microinvasion. You were originally going to consult Dr. Lagios to see if you could avoid radiation, with a very small amount of low grade DCIS. Then, microinvasion, then relatively extensive DCIS (albeit low grade). At least, you will hopefully be able to avoid mx (pending the pre-rads mammo). I guess with more extensive DCIS, the idea of the microinvasion is more plausible, than with the tiny amount.
Sorry that there are just so many inconsistencies in your case, between path findings and clinical recommendations. You seem to be holding it together pretty well.
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I guess I am doing pretty well. He still feels it was all gotten, my prognosis is among the best, etc. But isn't that something of a miracle, to have the whole lump sample ( but for 05. mm, 2 sides about 1.5 mm, the last at 4 mm) be DCIS, and I guess by chance to have gotten clean margins? As I said, unless something else is found, he does not, with the rads, advise re-excision at all, says I'm going to be just fine. What on earth am I to think about the 2-3 pathologists at my HMO? And Kaiser is a great HMO. I am glad I consulted with him.
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I can tell you, I am not going to take another as-yet unplanned step without consulting him. If my pre-rads mammo has anything they are worried about, I'm going straight back to him before doing anything. Not even sure now if I can trust the HMO interpretation of my pre-rads mammo, even if it's fine. Maybe, for a bit more of a fee, I can have that mammo disc sent to him so he can look at it, if they say it's clear. Would you?
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Lagios sounds amazing, but isn't he a pathologist, not a radiologist? That would be my only hesitation in doing a mini consult with him regarding a mammo. When I had a second opinion at a cancer facility (where I ended up being treated), the mammos and MRI's were read by radiologists and the path slides were read by pathologists.
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Yes; you make a point. However, even though he is technically a pathologist, he is viewed as the expert on DCIS and DCIS-MI. He does review the mammos and MRIs as part of his consultation. Even my RO told me he himself would be giving me the pre-mammo results, not the radiologist, though of course he will be getting the results from the radiologist. I know everyone here says trust your docs, and they have been great, mostly. Still; it's clear that, in my case, if I had not overseen every step, there would have been mistakes left unnoticed. Not forever unnoticed, perhaps, but not noticed in a timely manner. I insisted on the breast MRI. I insisted on more than one set of eyes on my pathology. I investigated the SNB to the fullest. I'm thinking of becoming a medical advocate. Several docs have told me I ask great questions, and have the ability to be incisive and direct without being confrontational, and suggested I look into medical advocacy. A lot of older or very non-assertive people just can't do that for themselves. I can't be a waitress forever, at this age. An honor student, I only did not get my degree because I had children so young and was divorced at 22. Maybe, after all this, a new career. Silver lining?
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Great silver lining!
You trust Lagios; and of course, he can interpret all kinds of diagnostic data. I just hope that this goes smoothly, for once, and you can just move on to the next step. I know you trust the RO, and that's good, because you do have some tricky issues there.
And, P.S. I can tell you were an honors student, because you do write in a very articulate manner, and catch onto all of the crazy complexity of this stuff at lightening speed. That means you can probably help others do the same.
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Thank you, my Dear. xx
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Although, of course, it's Beesie who should be the medical advisor. I am only JUST learning. Though, really, dispensing information (and love), as Beesie does do amazingly, is not the same as being a medical advocate. I cannot speak for you, Beesie, but I could guess that your enormous contributions here (about which you should write a book, as I'm sure you have been advised to do) may just be what you want to do, or you would have done something else. You may not be in my position; an intelligent woman who has had to do menial work so far to support her kids. Don' t need to stick to that anymore, and, anyway, they want younger restaurant personnel (though I still have energy and look OK). I wonder if there is a certificate course in medical advocacy; cannot imagine anyone would hire me just because of my abilities, without that. I always feel a glass wall between my abilities and what is possible for me. I intend to let this near messed-up experience give me the perspective I was needing in my life. That may not sound like being about DCIS/BC, but it is.
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Percy, we have been cheering one of my high school friends on for the last several years. At 53 she just completed her internship & graduated with her bachelors degree in Social Work. We are so proud of her. It iis never too late!
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Question about Dr. Lagios. I was looking for a email, as I have questions regarding how to get pathology slides and how are they sent? I am done with treatment, but would like to see his opinion. Do you know if he also looks at Rad reports?
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Percy, here's a start to thinking about patient advocacy. You may need to get some experience in the medical world before doing this (other than being a patient--lol), according to my readings on it. Food for thought. Very interesting idea.
http://www.patientadvocatetraining.com/?page=certificate_program
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TB90 - The short protocol for rads is 3 weeks + 1 wk boost, as opposed to 6 wks + boost. Can be done in certain situations. Shorter time; higher rads, then. It works for me. I need to have this done with. xx
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I am hoping to do the same. ONCE I finally get my appointment. I find it so hard to sit in limbo waiting for appts. Has anyone seen any studies that support the shorter protocol? I want to be very prepared before going in and asking or it. I am having a difficult time finding any thing definitive. Melissa, congrats for your friend achieving her BSW at my age! I have been practicing for 31 years now but realize that life experience combined with the education is what makes a very effective worker. She will be far ahead of the younger graduates in her abilities.
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Hi TB90, the short protocol is called the "Canadian protocol" based on a study in Canada. It is now the standard protocol at Memorial Sloan Kettering for DCIS and early stage bc (Stage 1 and Stage 11a). They don't routinely do the "boost", only under certain circumstances, such as the close margin by the chest wall (sound familiar Percy?). I didn't have to do the boost, so the entire thing was done in no time. You still may experience side effects (because the shorter protocol has a higher dosage), but the inconvenience and disruption to work life, etc. is reduced substantially.
I imagine that more sites would do it routinely, but for the fact that they collect $$$ for more days of treatment . I asked my RO why these other places have the 6 and 7 week protocols and the extra boosts for everyone, and that was her response, and she's been in this field for many, many years.
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Will probably bite the bullet about pain and have the pre-rads mammo this week. I have to say, I am very anxious; really frightened. This is my last stop before doing rads and completing treatment. After finding from Dr. Lagios that basically my whole lump sample was DCIS, with narrow margins, I'm really worried. It's been a difficult road for me, with path changes and liver findings, and I think I've tolerated it really well. However, the idea of another biopsy, and possibly disfiguring (in my case) re-excision is torturous to me. I simply don't feel I can begin it all over again, and have the added burden of not being able to live through it, in practical terms, as well. I have to get back to taking care of the other parts of my life. I see so many women here who had 2-3 surguries, and also recurrences soon after the start. I am presuming they are the ones Posting here more than those who just had a lumpectomy, rads, no more problems, and moved on. Still; I'm scared.
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Percy, you've had a lot of unusual stuff thrown at you through this process. So look at it this way:
First, you've handled everything really well, so if anything else happens to you, you will figure out how to handle it too. You'll be okay, whatever happens.
Second, and more importantly, you are certainly due for something going well and right the first time, aren't you? So shouldn't this be it?
Of course you are nervous. Of course you are scared. How could you not be, given all that has happened? But bad things happening is not correlated to how scared you are. You are scared because of the bad luck that you've already had through this process, and the fact that you are facing a huge unknown. That doesn't mean that this won't work out okay and that your pre-rads mammo won't turn out to be perfectly clear.
Sending lots of cyber (((HUGS))) your way!
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Hi Percy,
I'm sending hugs also!
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Percy and others,I had a short protocol of rads at Yale, a total of 37.5 Gy over a 5 day period, twice a day. They did an MRI daily to make sure to pinpoint it as it was not whole breast rads but a Partial breast radiation protocol. It was a trial and I fit the criteria. The preliminary studies show high effectiveness but not as good in the cosmetic dept (more shrinkage) so I went with it! It has been almost a year and so far so good. My first mammo went well.
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