Lumpectomy Lounge....let's talk!
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Allison, if you haven't grabbed a copy of Dr Susan Love's Breast Book, please do so. While some of the information is dated, it is an excellent resource for learning about BC. It is honest. I read it in one weekend (and it is HUGE). When the updated version comes out (this year maybe), I will get it too.
Oncotype testing often done. Read this: Oncotype Test It can help determine the need for and efficacy of chemo. There's a huge gray area where you and your MO have to decide what is best in your particular case. But it can be reassuring to know that it wouldn't help you or that it would be a huge help. Interesting enough, my MO thought my 13 score was borderline. My BS and RO wholeheartedly disagreed. So no chemo. Just Arimidex.
There are so many great articles here on breastcancer.org to help you understand your diagnosis, treatment options. Search for your particular diagnosis and read away. You can never have enough information and you can rely on the information you get here. If you haven't joined up, consider joining Dr Love's groups: Army of Women and the study of breast cancer (for those with AND without BC) Health of Women study. it's one way ALL of us can help other women.
If you have questions, ask. We're all glad to tell you of our own experiences and what we have learned. We aren't experts but perhaps we can help you. HUGS!
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Thanks for all the information everyone!
Nash, Did they give you the choice between external and internal? Did you have to take precautions with family, pets, etc.? I know that you don't have to with external, but not sure about internal.
Allison, So sorry that you were diagnosed while dealing with so much else. I hope you are doing well since your move. I was really lucky to get the path report back so quickly this time, it wasn't like that the other two times. It took 16 stress filled days to actually get the diagnosis. If you haven't heard today, I would give them a call. I hope that you get the all clear! The hospital I am with has a patient portal which posts when results are ready. I saw that the pathology report was going to be posted in a week so I called doctor (both times) and asked if she could get the results that day, which her office did. The reason I waited so long for the first lx was because the surgeon who did the biopsy turned out not to be the one for me. When we discussed my diagnosis and I started asking questions, she asked me if I went to med school and have I been doing surgery for 20 years. After going back and forth, I asked how much she would need to remove she told me as much as she needed. And, that if she didn't get clear margins she would just go in again. I left her office, went home and started searching for a different surgeon. The best move I made! I chose a surgeon from Dana Farber who was recommended to me by several people. I am extremely happy with my choice. She is kind, caring and most of all listens to all my concerns. Prior to my last lx I asked her to be extremely aggressive and she agreed. In the beginning, she cleared 2 of the 6 margins, this last time she cleared 3 of the remaining 4. I really hope that she doesn't recommend mx, and that if she goes in again Tuesday she gets the rest.
Peggy, thank you and I am glad to hear you did so well with your rads. I like hearing when someone has a good experience. It helps to ease my mind of what I may experience. My doctor didn't recommend the oncotype test, but I did have the BRCA 1 & BRCA 2, due to my sister having breast cancer at 34. Happy to say both came back negative. Yikes, about the wind chill!! I can handle all of the snow if it means higher temperatures. Stay warm!!
Kay, I was dx with grade 3, comedo necrosis and unfortunately that didn't change with the second opinion. The biopsy had showed that 2 areas had clear margins, but when the new pathology dept. reviewed all of the slides they disagreed. I guess clear margins is another area where surgeons disagree. My original surgeon said she goes for 1mm, but the surgeon I have now believes that it shouldn't be less than 2mm. I don't know if that would have made a difference on how many lx's I have already had, but I know that the clearer the margin the more comfortable I will feel. I hope you do as well as Peggy did with her rads.
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Rekidal, makes sense that you didn't have an oncotype test. Smart of you to get tested for the BRCA1 and BRCA2 genes. You must have breathed a huge sigh of relief to come back negative for them. I'm glad I'm able to ease your concerns about radiation. I suspect that most of the women who have few, if any, problems don't post that often on the rads forum since they don't need help coping with problems. I was advised to use Aquaphor (which I wasn't allergic to - a big concern). You're usually advised to not use deodorant with aluminum in it, which means Tom's of Maine. I turned up allergic to it so went stinky for weeks.
I'm so glad you found the right surgeon. I wouldn't have been happy with your first one either. Mine came highly recommended and with good reason. She listens! And takes her time. Doesn't pull the often found "I am God" attitude many surgeons have. HUGS!!!
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Peggy, You are right about doctors and the God complex. Several years ago, my son was being prepped for surgery and he mentioned to the nurses that he was considering becoming a heart surgeon. They asked him if he thought he was God, or if he is just arrogant. Lol.
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Oh my. That's terrible. Cardiologists do have that God-complex. Not just heart surgeons.
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It was so funny. He just laughed. Btw he decided not to go into medicine, even though he is arrogant. Lol0 -
HAHAHA!!! Love it!
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Just called the nurse navigator and my BS's nurse, both are out of the office until Tuesday. I called general number and left a message for someone to call me and it turns out it was an acquaintance. She said that my report is not back and that sometimes it can take TWO WEEKS for the pathology report to come back depending on what is ordered.
She suggested I call back Tuesday if I don't hear anything.
Sigh....
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Peggy, surgeons have the God complex, in general
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Allison, that's terrible that you have to wait so long for results! That just seems inexcusable to me, not that I have any right to have an opinion. But really, that's just not fair, and I can't think why it should take that long. I hope the results, when they finally come, are good!
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Kay, that is generally true. Luckily my BS and DH's kidney surgeon missed that gene!
I have to agree with Kay, Allison. I'm very surprised that it is taking that long. That's a hard wait.
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rekidal, that first surgeon you had sounds terrible! I'm so glad you got rid of her. My friend's DIL was treated for a very aggressive bc at age 32 at Dana Farber, and they have nothing but glowing praise for the care there.
See, this is what I was griping about last night, about the lack of consensus on treatments for DCIS. It drives me little bit crazy. Also yes, apparently pathology can be a rather subjective thing, and pathologists do disagree. Also on the clear margins: surgeons have their own standards, of course, because they're surgeons
But the current accepted standard of care, at least for DCIS, is that any clear margin is a good margin, no matter how narrow. As long as there's no "ink" on the border, it's considered clear, and that's been borne out by a lot of studies on outcomes. I've also read that some surgeons insist on a minimum of 1 mm, which doesn't seem too extreme, but some prefer a much wider margin. If you have wide margins, low grade DCIS and a smallish tumor (along with a few other factors, like age at Dx), SOME surgeons and pathologists think you can safely forego rads after surgery. (With our higher grade + comedo-necrosis, that doesn't include us). But like everything else, not all BSs agree with that, either. Same with rads: standard of care is the 3-week protocol, about 15 or 16 treatments, but only a minority of women are given this option in this country, even though it's been recommended for at least 10 years! Outcomes shown to be identical to the longer protocol. I don't really get it, except I guess change is hard to accept, even when totally backed up by science. The important thing is to be cured of cancer, don't get me wrong. But this still drives me a little bit nuts.
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I think my BS missed it too, but we're lucky!
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Hi all! I just got home from Chemo #3 and I wanted to chime in.
Allicat, there is a definite learning curve with BC. It can be overwhelming. But I have learned so much here at BCO from the discussions and (very importantly) the "Jump to a Forum" information from the experts on all things BC. The best advice that I read is "Don't go there 'til you get there." So I learned as I was going through each step to keep the stress and overload of info to something manageable.
Everyone is different, but my path was surgery, final pathology report, then release from Surgeon to Oncologist, (I requested Oncotype Score from her) where I am now. I know radiation and hormone therapy are in my future, but I don't go looking for that info yet. I am learning a lot about that here in the Lounge, but that is secondary to just wanting to keep up with everyone's journey here.
Keep asking questions, lurk around other threads that pertain to you...and be sure to check out "Warm and Fuzzy...." when you need to turn down the BC radio station in your head.
XOXO to all, Becky
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Becky, how ARE you doing? Managing the chemo okay? HUGS!!!!
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I just got a copy of my path report. I had mentioned before that my surgeon was originally going to take 1cm but I asked her to be more aggressive. According to my report, she was absolutely aggressive. Which I am happy because she did clear 3 margins. I hope know one minds, but I just wanted to share the tissue sizes with you, and get your opinions. Original biopsy was 3cm x 3cm x 2cm
First lx: 6cm x 5cm x .5cm (approx. I don't have the report in front of me)
Last weeks lx: 2.8cm x 2.5cm x 1.2cm 2.1cm x 2cm x 1cm x 1.5cm 4cm x 3.5cm x 1.4cm (still not clear)
4.5cm x 3.5cm x 1.5cm
Does that seem like a real lot, or have you all had larger areas removed? Or, am I overacting and that is not much at all? I am fortunate to have large breasts, but getting a little nervous about what it is going to look like once the swelling goes down. Unfortunately, with another surgery coming, it looks like I will be swollen until mid March.
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Hi, Peggy. I'm thinking about you so much up there in that blasted cold. It was 27 here last night. I bundled up for Chemo at 8 a.m. And by the time I got there I had perspired in my cap and went bald for a few hours til it dried. So I wore my best smile as the newbies stared. I know I won't be able to tolerate anything on my head once the 90 degree with 90% humidity days hit (sometimes April sometimes May).
The steroids give you a good energy buzz for the first few hours...but their purpose is to curb the initial shock chemo gives your body, and they work great for me. Plus I got 1 anti-nausea push for today and another in a drip to keep nausea away next week. Then the two chemo drips, one at a time. SE's have appeared Day 3 to 5 for me, usually just constipation, which I am trying to keep ahead of, and the need for lots of sleep, my favorite activity.
Keep warm. I'll be lurking for a few days. XOXO, Becky
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Rekidal, I just looked over my path report and my lump removed was 5cm x 3cm x 2.5cm. I believe one margin was very tiny but I can't determine that. Maybe 1mm or less. My notes say that the BS was still considering a mastectomy as I went into surgery since the MRI was inconclusive - I had a huge hematoma STILL after 6 weeks from my core biopsy. I couldn't quite make sense of all your numbers. But the important thing is to have clear margins that make the surgeon happy (and thus you). I'm very small-breasted - barely an A cup. And while I have a dent under my breast (my tumor was at 6 o'clock), it's not bad. I believe someone said that perhaps down the road you might want to have surgery to make both girls about the same - something to think about someday. HUGS!!
Becky, you can go bald and have the hair come back with your cold cap? Really? That is strange. Glad for you! Sounds like you are coping fairly well. Glad to hear it. I'm sure it's not quite that easy but doable. HUGS!!!
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Hi Rekidal and All -
I had my surgery on September 30 th, and radiation started on November 3rd. The very first appointment, which is called the simulation is one of the longer appointment because they are mapping everything out, making the mold for your head. Also, it is generally at that time that the tattooing is done. The rest of the appointments, in terms of the time of the actual treatments, probably about 10 minutes, This could include the time for changing. My treatments were only affected by Thanksgiving. For that week, we had treatment on that Sunday. We had Thanksgiving and then the next day off.
The treatment itself isn't painful, but your skin can appear either tanned and/or red, but comes toward the end of the treatment. You will have a radiation nurse, who will monitor who will help monitor your skin as well as other things. That would still be a tough call about a third lumpectomy vs a mastectomy.
I know some about Carver - home of the Edaville Railroad
MarieBernice6234
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Hi Peggy, thanks for sharing. I know, this report was somewhat confusing as a whole. Report classifies each area: inferior, posterior, medial and superior. The only margin not clear is the medial. I guess that is the one closest to the breast bone. I am looking forward to this part being over.
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Rekidal, I think that that breast bone margin is the hardest to get a big, clear margin. That's the one that was tiny for me. Oh hell yes you want it over. Isn't that a DUH???? HUGS!!!
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Sorry for the confusion Peggy. I do not cold cap. I was wearing a terry cloth cap under a crocheted cap just to keep my head warm. Both got wet and cold.
I use to have dull grey straight hair that was thinning but a nice crown of snowy white around the face. So being bald just gives me an opportunity for a different color and texture. Like I posted before, I'm asking the Hair Fairy for curly white this time around. XOXO
P.S. A lot of the conversations about radiation are way over my head right now. But I appreciate them so much and know they will be invaluable when I get to that step and reread all your great info.
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Becky, I did mis-understand. Good luck with the hair fairy. I think she totally ignores what you want, draws a hair type out of her pocket and that's what you get stuck with
Curly would be great!For the radiation, just know you'll breeze right through it. I think most women find them easy after chemo. I found them easy. Few SEs. HUGS!!!
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rekidal...I was told I was a good candidate for the the internal rads (not sure exactly why....maybe the size of my breast, the location of the tumor and my age) I'm a B cup, tumor was close to the the side of my breast and I was 59. It was weird having the contraption in me for 8 days but was glad to get it over quickly. Larger hospitals and surgeons who have experience with the devices were also contributing factors. I had the Savi.
Doesn't seem to be too common on these threads.
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Marie, we are known for the King Richard's Faire as well. If we didn't get a free Carver day every year, I probably would never go. Lol.
Nash, did you have to keep your distance from people, or were you okay to be around others? I had a friend who had to take radiation meds, it has probably been 30 years, and she couldn't be around anyone for a while. I'm sure that the medication has come a long way since then, but just curious.
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Hi I also had internal rads so did my sister who was dx 2 months after me. I was told you had to be 45 and the location of the turmor is a factor. I was 44 so close enough I guess. My sister is small busted but since her tumor like mine was at 12 oclock she was also able to have it.
No we didn't have to stay away from people. The pellets were dropped into chambers in the balloon that was inside our breasts. They were removed after just a few min. The whole procedure took about 11 min a day a time 2 x a day. I also had a ct scan each am to make sure the balloon was still in place. It did feel odd having that balloon inside me with those lines hanging out for those 8 days. I also notice it is not the norm to have.
I was reading earlier about people being on Tamoxifen. I have been on Tamoxifen since after radiation about a year and half now. I was told after I have my ovaries out on March 3rd I will be switched to an Al. Not sure I want to be switched as the side effects of Tami have been minimal and tolerable. It just drives me crazy how doctors can disagree on treatments. My OBGYN told me I could stay on Tami for surgery, I forgot to ask the general surgeon who will fix my hernia same time as my ovaries are removed( he was also my breast surgeon) and my MO told me to stop taking Tami one week before surgery and stay off it for a month. He will then put me on the AI.
I have been very down. not sure if it is from weaning myself off Tami or if I am just bummed about two more surgeries and not knowing for sure if my ovaries are a cancer. UFFFFF!!
Its also been very cold. 28 below this am without factoring in the windchill and more cold to come. We have quite a bit of snow in this part of the state. Seems we get hit each time it snows. Sometimes I wish they would call things off when it gets this cold but they seldom do. I can not wait til spring so I can get out and walk.
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rekidal ..like ndgrrl explained the pellets only stayed in a short time and then removed so it was safe to be around others.
Ndgrrl....I thought it was cold here but nothing compared to you. Sorry for your upcoming surgeries. Hoping your ovaries will be cancer free. I'm on Fermara and have had no side effects so far. I guess after your ovaries are removed you are in menopause. The AI's are very effective for post menopausal women. Wishing you the best
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*General Side Effects - Cancer Treatments*
http://breastcancer.about.com/od/generalsideeffects/ - general side effects - 24 Articles in: General Side Effects - Chemotherapy and Radiation Side Effects - Treatments
http://breastcancer.about.com/od/Oral-Side-Effects/ - Oral Side Effects of Chemotherapy
http://breastcancer.about.com/od/Neuropathy-And-Nail-Care/ - Neuropathy and Nail Care
http://breastcancer.about.com/od/newlydiagnosed/ - Newly Diagnosed - What You Need to Know Before Starting Treatment
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Rekidal, without reading through my long pathology report to find all the measurements of all sides of what was removed in my Lx, I can say that the entire "mass" that was removed measured 2.4 cm. It would have been smaller, only a bit over 1 cm, except a second area of DCIS was identified in my second diagnostic mammogram prior to surgery. This fainter area of suspicious calcifications was close to or adjacent to the first, which was why I had to have 2 wires to "bracket" the entire area prior to lx. Out of 10 slides that were examined from the 2.4 cm piece of tissue submitted to the lab, only 3 slides contained any DCIS, the rest all just normal breast tissue, so my interpretation of that is that a fair amount of normal tissue had to be removed to make sure they got all of both clusters of calcifications. The margins were all greater than 3 mm (the path report doesn't say how much greater, so I guess 3 mm is some kind of threshold for the pathologists), except for one, the anterior margin, which is listed as less than 1 mm (but still clear). Before I talked with my BS at my post-op appt 2 weeks after surgery (he'd been out of town so didn't call me with results as expected), I was concerned that I might have to have a second excision for that anterior margin, but here it gets a little confusing. When I asked about that, I was told that no, Dr. Euhus (my BS) always takes a wider margin than what was in that report, so it was all good. I'm still not sure about the explanation, but I'm glad that the margins were all clear and no repeat excision was needed. As I said in an earlier post, even if that margin were less than 1 mm, but still "clean," the accepted standard is now that any clean margin is a good margin. But it's still up to the individual surgeon to make that call.
Compared to me, you have had a lot more tissue removed. But it sounds as if you had a lot more tissue to start with, and that does make a big difference. One of the considerations for whether to do lx or mx is how large the tumor compared to the breast volume. If the amount of tissue you've had excised were taken out of my small breast, I think I would have had a mastectomy, in effect, only in 3 stages, which would have been kind of awful, and in that case, would have been better to just do the mastectomy in the first place! Luckily, I didn't have that, but the point is, there's no one-size-fits-all.
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kayfry - Regarding margins, I believe some surgeons routinely take extra "cavity shavings" to help ensure clean margins. I wonder if your pathology report only includes the main lumpectomy specimen. My surgeon took six additional margins and they were listed after the (large) main specimen in my pathology report. Maybe that would explain why your margins are wider than reported. At any rate, it's great that your margins are good!
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